18 March, 2018

Ongoing post, Update day to day life V, January 2017 - October 29th 2017

UPDATE: I have just changed the blog-theme, lay-out and background colours of this blog, as the old format turned out difficult to read on smartphones, but I'll need a few weeks to adapt each of the 71 blog posts here to match the new colours. So apologies for the blog STILL being difficult to read due to light pinks and greys in the text (which are now unreadable with the new light background). Am changing it all in the next weeks.  

I try to give an insight in my own life and dealings with rosacea. I also try to gather information that might be useful for everyone with rosacea, especially subtype 1 with burning, flushing and skin redness. I happen to be a bit unfortunate in that I have this condition for a long time already, and unlike many others, I haven't been able to get it into remission. I know it is more uplifting to read about someone who has beaten rosacea, but I like to write about the struggles that come for those who haven't achieved this. If this depresses you or scares you, it is probably best to skip my day to day life update posts here (which are only a fraction of all posts), and maybe stick to the rest of the posts, which gather information.  

October 29th 2017

October was a month of ups and downs. As usual. 😊 Downs were my skin playing up at times, with constant burning and flushing and need for cold packs and fans, but then other weeks all that went down a few notches again and I could do a lot more things outside the peripheries of the house. Apart from some social activities I was very happy to be able to pick up my long walks again. Summer had been quite brutal with high temperatures and so my outside walks had suffered, but now I am picking up with my walks in the countryside, ideally 2 hours or so a day.

I had also planned to be in New York by now, but had to delay it as the weather was still 20 degrees there and my skin was just too sore and reactive to survive nine hours in a plane and it then being 20 degrees outside (I had hoped for 15 degrees or below, given I'd be walking around all day and heating up enough as it is from that to deal with 20+ degrees Celsius on top..). I mean, if you're going to spend the money once you might as well pick a perfect (or close to) timing? Hot weather could have made me housebound all week in the apartment I had my eye on in Brooklyn! Uh uh.. Better off just booking last minute, when it is certain that the conditions are right. That's the luxury you buy I suppose, with a bit of extra costs for plane tickets and room reservations, but there is just no point going now with such a flushy and painful face.  Luckily the friend I was planning to visit was completely understanding and empathetic and wrote the sweetest message back, praising me even for stating clearly what I need and listening to my skin. She said I could come any time I want and to put to my skin and health first. That was a relief to hear, as I had delayed things at quite a short notice. She has pretty bad rosacea herself, she is my ice fortress friend so to speak, and I was so much looking forward to meeting her in person and testing out her newly built INDOOR salt water pool with a wave machine, very comfortably warm water (given how our bodies are normally always cold from fans/cold indoor air, while our faces are hot) and .. <drums> .. a big ventilator and air conditioning all around the walls of the pool to keep our faces cool 😆. See small video below. Here it is, what a dream. I hope to be able to come over in the spring perhaps, when temperatures are a bit lower outside.

I am done with the montelukast for now too. I feel it made matters a little bit worse perhaps. Maybe will retry another time when my skin is (hopefully) really calm. That is usually the best time to try something out for me.

I also had an appointment in hospital to check the earlier detected ovarian cysts. I have some strange  chemical sensitivity/ immune response hyper-reactivity to perfumes and some other substances including propylene glycol. Even washing my hands with perfumed propylene glycol makes my skin burst in red flames near instantly. It is maddening and crazy and I wouldn't have believed that something on your hands can flare your face if I hadn't suffered from it myself. But the gynecologists needed to use a ultrasound gel and despite me purchasing my own hypoallergenic one online (which she was happy to use luckily), it still contained preservatives and propylene glycol. Just no perfume. Both doctors first said "Oh how inconvenient for you, such hypersensitivity must be difficult to live with", but a minute after starting the procedure and applying the gel, they both said that they could already see what I meant, as I was beet red and flushed right away. I completely hate my life at such moments, it's so frustrating. The good news was however that they couldn't find a single cyst. They couldn't find anything out of the ordinary. It took ten minutes to find my ovaries who were hiding apparently, but even that was good news because with endometriosis or cysts, you would definitely see them on ultrasound. I asked them how in god's name the other ultrasound doctor could have found these cysts and even thought I had endometriosis ánd was pregnant (she gave me a fright there, it was just a cyst though), and I had brought the scans along for the doctors to see. They said the cysts were pretty small on that scan, despite them being zoomed in pretty sharply on the prints, and that this doctor most likely mistook normal mid-cycle follicles for cysts lol. Oh my... A whole lot of worrying over nothing again then. 😊 Glad I had this second opinion before doing MRI research, now there is no need for that.

Hormone levels were normal too. I thought my estrogen was a bit low but she said that it was high enough as I have normal ovulation, which the right height of progesterone in my blood told them. I expected the lower estrogen to perhaps be a possible reason for my worsened rosacea and flushing the past year. But it seems estrogen is in the normal range and I am not near menopause yet either. Doctors had predicted that a decade ago already, due to certain AMH hormone levels and follicle count, but no sign of that yet.

Now over to the fun things. I had a wonderful time out and about, visiting some Dutch cities with a great friend who also has rosacea. It was a rare spring-like week in October, usually rainy and dreary in the Netherlands, but now it was around or above 20 degrees daily, clear skies and most importantly, no rain. Because the sun is quite low now in autumn and there was lots of shade everywhere in the cities visited, I didn't flare too much. Just now and then. Went to Amsterdam, visited a Dutch castle, went to a theme park and did a lot of mandatory bicycle riding. Holland is a bicycle country and there are more bikes than cars. It is very busy on the roads usually with bikes going all over the place, but it's second nature here as the country is compact and small and entirely flat. For anyone who isn't used to this, it might seem chaotic, but it really is the best way to go about in a country as condensed and flat as mine. 

I had a bit of an issue renting a car. I had booked one online and after a long bike ride all the way to an industrial area outside town (that's what you get when you go for the cheaper car rentals in town), they gave me a car that was decent enough, but that had the ventilation ducts hidden behind the steering wheel! I rely on airco and fans in the car, especially during a warm and sunny week. When I drove in the car I hardly felt the fan blowing, and it only had 3 settings: very low (you didn't feel a thing), middle (very faint) and 3rd which blew you away. Also not too much options to set the temperature, but worst for me was that the brunt of the wind was caught by the steering wheel. I drove off (secretly putting my bike in the back a street further, protected with a cloth) and then returned because I just felt this was not good for long driving. I asked if they by any chance had another car and he said unfortunately he had not. The rest was rented out and he didn't have a lot of cars to choose from. I explained the air flow thing and of course he looked at me as if I was crazy but still he said he understood. I asked if I could hand it in earlier if I found another car elsewhere and that was no problem. I felt pretty bad for being such a neurotic about it, but while driving back home with it I either felt hot in the face from no air flow, or pink from too hard an air (jet)stream. Never seen a car where they installed the fans right behind the steering wheel either, and it was a big bulky steering wheel too. So, this one didn't sit well with me as it would cost me a good bit of money. I decided after coming red out of the hospital, to have one single look at the cars in the Europcar shop, close to my home. First I was told that they had nothing available, but after some typing the man behind the counter said that they expected a Ford to come in at the end of the day, he showed me what it looked like in the parking lot, where a similar car was waiting to be picked up by someone else. Fans looked fine, it even had dual temperature and fan settings and the car looked more modern too than the one I had. They even gave me a better financial deal. So I spent the rest of the afternoon racing back through rush hour traffic, to hand the first car in at their shop before they closed at 5 PM, sneakily bringing my bike in the back of the car again, then biking back through storm and rain for a good 30 minutes to the Europcar to pick up the new car. Which looked fantastic, a modern black Ford with all sorts of nice gadgets and great fan options.

But now a new problem surfaced: this car smelled terrible. And by terrible I mean: chemical. Very  strong cleaning smells. As if they sprayed it with an air freshener with the scent "Brand New Car". And of course that made me flush, dmnit. I thought that keeping the windows open while driving would deal with this problem, but the smell stayed for as long as I used the car. It could give you a headache, that strong. I found out the next day that the steering wheel gave off a very strong perfume smell, and the safety belt and gear stick too. The seating and dashboard was also smelling of it but not as strong. Discussed it with my friend who also got dizzy from the smell and said it did hit you like a brick when you opened the car doors, and we decided (after multiple washing attempts did not solve the problem whatsoever) to go all SciFi crazy, and try to wrap the steering wheel up with transparent cling film. It looked ridiiiiiiculous, haha, but it did help a lot. The steering wheel smell was taped in successfully. I then tried to wash off the rest with some neutral soft washdisher soap, but it didn't help much. I called the Europcar man about it even the next day and he said that yes, they did clean and spray it right before I picked it up. And what a shame they didn't know in advance that I am sensitive to that. I was more flushed for sure in the car, but just dealt with it because I really had enough rental car changing done for a while now. Airing the car before take off helped a bit too and at some point you get used to the smell and don't even notice it so much. It was more my crazy skin and nervous system flaring from it. Lesson learned for a next time..
But it was good to have a car because it makes going to cities further in the west a lot easier. Two hours drive to get there (and by then you crossed over half of the Netherlands, it is thát small), but very comfortable and with your choice of music on and a fan of course. Although my own hometown Groningen up north is a great city too and probably my friends favourite, with its coziness and quaint old buildings and young student atmosphere.

In Groningen we looked for a bike rental. I only have my one bike, after all. Showed the cute Folkingestraat with its many shops and food places, we went inside the big Synagogue there, which was lovely and we were allowed to look around without paying an entrance fee. Showed the big market with its food stalls and great atmosphere three times a week, ate some real Flemish thick fries with the inevitable mayonnaise. Then got the bike and the bike riding was a total blast with someone who isn't used to it, given how many people bike and what mayhem it is due to bike riders here more or less making their own traffic rules. I suppose it is unique and typical Dutch; bikes everywhere, swerving in and out of traffic. I have a nice big park behind my home and it has an English landscape style, with several ponds. They house a group of geese and they are huge bulky pushy ones, who I love. I make it a habit to feed them when I'm home and they now eat bread from my hand. But because of their sharp beaks, wearing gloves prevents bruises or even small cuts, although some geese are very gentle and careful when taking the bread out of your hand. There is one clownesque goose who is so funny and smart and always stands behind or beside you and when he doesn't get a new piece of bread soon enough, he picks your legs or back to usher you on. Resulting generally in him getting even more bread, it's hard not to reward such sneaky cleverness. It's the big brown boy in the left picture here, center of the photo, before he took his position.

There was a theme park visited as well. Called the Efteling. I went there some years ago with my family and also posted about it here on the blog. It was a good 2,5 hours drive to get there, and we reckoned it would not be too busy, as this was the last day of regular schools being open; from Saturday it would be autumn school holiday for a week. Maybe some kids were taken out of school a day earlier, but surely not too many? We managed to arrive short before 1 PM while the park closed at 6. It was packed!! The parking lot was pretty much to our surprise. It was nice weather though, mild sun, 19 degrees. When in the park we went straight to the outer corner called Ruigrijk, with roller coasters. We first went in the roller coaster ride I love best, called Joris and the Dragon; it's made of wood and goes extremely fast. No looping, but it has a very high speed. We also went into another ride that partly went through the water. We were the only ones shielding our faces when it splashed some water around, like a bunch of weasels. In a jolly mood however. We also went in something called Villa Volta, a turning house, which doesn't really turn but uses some trickery. The outer walls of the house rotate and the benches on which you sit swing a little bit up and down, enough to make your brain think that you are really making full loopings. We came out as completely dizzy, despite technically not having moved very much. Every attraction took some waiting time, usually 15-20 minutes, and by the time we headed back to the Joris and the Dragon ride (the best one we thought), we only had one hour left before the park closed. We went in it again and ran like a bunch of kids around for the last ride of the day, before things closed at the Calvinist Chrrristian time of 6 PM. Only in the Netherlands most likely 😆 It was an all in all childishly fun day and we even got giddy enough to start feeding chips to the seagulls roaming the park. The chips were not the best, a bit too fat and soggy, so we threw small pieces in the air, and waiting seagulls would pinch them mid air. One even took one piece straight out of your hand. Some other people nearby seemed to enjoy our antics too. 

I made a visit to the castle De Haar, near Utrecht. 

I will also add some pictures from it. De Haar Castle is the biggest and most luxurious castle in The Netherlands. It has medieval fortresses with towers and ramparts, moats, gates and drawbridges. It also has old gardens (covering over 135 acres of land) and ponds, as one would expect for such a humble abode. It dates from the 13th century. Over the course of the 18th and 19th centuries it fell into disrepair. When baron Etienne van Zuylen van Nijevelt van de Haar inherited it, he called in the help of a well known Dutch architect called Pierre Cuypers (famous for his designs of the Rijksmuseum and the Central Station in Amsterdam), who restored and rebuilt the castle from 1892 till 1912 and who was inspired by a French style castle.

Of course, this was a very costly project and the baron didn't have lots of money, so he made a favourable marriage match. He married Hélène de Rothschild, and through her rich and extremely powerful and influential family he had unlimited funds to rebuild the ruins he had inherited. Money coming partly from financing war and lending credit. I think quite a few European aristocratic families are intermingled with the banker barons somewhere along the line. It seems almost counter intuitive that someone could marry a Rothschild and have unfettered access to her fortune, unless it was a dowry. If anyone could fork over a dowry that could restore a castle, it would be the Rothschild's. It’s secret ingredient… is crime. So with all this money available, the baron not only made the castle ruin into a fancy retro castle, but he also bought up nearby cottages (ones he could overlook from his castle windows) and rebuild an entire new village a few miles behind his forest, so that he could destroy any houses in the vicinity. This forest was also planted by his orders, but the baron was too impatient to wait and see small trees grow into big ones, so he uprooted entire adult trees to his liking. To be fair to the Baron, I would have done the same thing with constructing a new village and tearing down the old one. Not sure I’d have gone so far as to uprooting mature trees and relocating them. That seems a bit impatient, if not insane. They invited the Hollywood elite and threw posh parties, showing off their riches. For over a century it was tradition for the Van Zuylen van Nijevelt van de Haar family to reside in the castle for one month a year only, in September. That is when they hosted masked balls and such for people like Coco Chanel, Maria Callas, Gregory Peck, Roger Moore, Yves Saint Laurent, Joan Collins and Brigitte Bardot. The place was already very modern in the late 1800's and had hot and cold running water in each room, electricity, a Turkish bath, a hyper-modern kitchen and an elevator.

By the time we came out of that place, I was fairly flushed and my face felt hot and painful too. We went quickly back to the car and drove on to Schevening, which has a nice beach and pier and boardwalk. I reckoned we were only half an hours drive away so best to continue. The car airco was blasting too so that cooled me down. Unfortunately the car still smelled of the toxic spray they used before I picked it up. We had a little talk in the car about the evils of rosacea and about what more I can do to control this rosacea, laser treatments especially, and my worries about them.
Scheveningen was bliss. A nice breeze, still fairly warm weather for the time of year but no more flushing, probably because of the sea breeze. It was busy with locals eating ice cream or chips, the beach bars were still open, it was a holiday feeling. Strolled around, made pictures posing with parrots, fed the seagulls some of the chips we bought. Went onto the pier and just took it easy. Happy times. I love the sea and such seaside resorts. My skin had calmed down too. Bounty Ice cream to celebrate in the car.

In Amsterdam I later saw a nice photography exposition of the work of André Kertèsz, in a place called Foam, right at one of the canals. I loved it. Classical and mostly shot in the 1920's-60's, but he had an eye for every day scenes with almost abstract shapes, through composition and light and shadow. I sometimes wonder what makes a good picture potentially a great picture. Suppose that is very subjective, but there has to be something more than a clear shot and pretty composition, to make photos memorable. Apart from technical quality, lighting is probably the overriding factor in mood and intent. It dictates the settings for everything else. I don't think there is a formula as to what makes a picture 'great' ... usually it's when the essence of something is told through movement or clever observation - writing a story or caption without words.

Kertèsz was the master of street photography and I always love street-stuff. Things readily there, for all available, but not seen in the same light by all ('everyone can look but not everyone can see'). Ordinary objects like forks he could also photograph in a way that would highlight shapes through light and shadow and composition. So looking for beauty in mundane stuff, basically. He would just carry his camera with him wherever her went, even if that meant the front line of WW1. And he would shoot whatever was going on around him, instead of waiting for that one iconic shot to come to him. He also looked for specific geometric shapes and patterns, often from a higher point gleaming down. You simply see different things from a high perspective (often more abstractions) than you do on eye height. But he would also go for emotional events, things that touched his mood, and that got translated in the image.

Kertèsz wanted to be an avantgardist I suppose, he hung out with the painters and artists of those days, back in Paris. They all influenced each other. But I think I will remember some of his photos because at least he had a style and one that he stuck with throughout his career. It is nice to be inspired by beauty and by the eye of a master, who sees stuff around him (or her) that others walk past. Beauty is all around, yet we often fail to notice it. Becoming a bit complacent and stuck in our tiny little realities, so that we don’t always take the time to see all that is around us, even if it is sitting right across from us. I think about this sometimes. A friend mentioned about this that he was watching a movie about Time, and that one lady in it said that if she had more time, she would read lots of books, see movies, and generally do lots of things. But he asked aloud; would she really do that? Does having unlimited time give us the incentive to do more or do less? 
It's not uncommon to be actually more productive and inventive with time efficiency when we have limited time at hand. Think about the 15 minute lunch break during school or work, when you would do all sorts of things that needed done, as well as really soaking it all in, enjoying every minute of sitting down. Now, today, I can sit for hours if I want to, but I am not relishing sitting. I think being busy can help us have more time, if we use the time wisely. Or maybe it means for some people that it functions as a diesel motor coming on steam; the more we do, the more time we find to get some more things done. This might of course not apply to everyone. What my friend meant however, is that unless we really have a purpose, say you have all this time so you will read these 100 books in the next 6 months, then having tons of time won’t always do us a lot of good. Although this is probably a matter of perspective too. 😊 Some photos from the work from André Kertèsz:

Amsterdam visit was nice too. Again, great weather. Maybe a bit too warm even for me, 22 degrees and sunny. It took quite a lot of extra driving to reach the city center, as there was a marathon held, blocking the roads we were supposed to take. After some behind the steer ranting and asking the road workers where to go, we found still found the parking, just in time before our reservation expired. Amsterdam is usually extremely expensive to park but some parking lots are more affordable. We took the tram (only a few stops) to the city center. We took off at the central station, as I wanted to show Amsterdam from that starting point. The Damrak is a very touristy and busy street ahead of the station and it brings you to the main shopping area, the market square and then the canals. It shows you all sorts of highlights from the city, as well as the characteristic masses of people and tourists and the smell of marijuana everywhere.
We walked towards the canals and there are 4 big canals that run in a ring, a circle, around the inner city, so there are lots of bridges and cute side streets and canal photo moments, Many cafes and terraces and shops along the canals too. It's a nice area. We bought some food in a supermarket and strolled along the many canals. It was busy with tourists and locals, sitting along the water side or walking the streets. We walked towards the Anne Frank House. I never visited it myself, which might sound odd for a Dutch person, but there is always a huge waiting line. And every time I tried to visit, the waiting time was a few hours and I simply didn't have the patience. This time around, we saw a similar huge line, one that would take hours again to clear. Sorry, we have to come back another time... We had drinks in a cafe and made a canal boat trip instead. My skin had been fairly pale up until then but during the canal trip I got pretty badly flushed unfortunately.  

It started around 4 pm and was nice but we sat in a part of the boat that was covered and the little side windows were locked in such a way that you could open them just a tiny bit. Every other tour boat we saw passing allowed you to open those side windows entirely, not only for a better breeze but it also enables you to make clear pictures. But we had to do with what we had and it was actually really nice to realize just how long and extensive these canals are. From the water, Amsterdam seems like little Venice suddenly. The audiotour we were given told some anecdotes about the houses, its owners throughout history and some this and that's. Not a very cohesive information tour, but it had enough details to keep us entertained. I try to remember the stories told but they were mainly about the buildings along the canals being for storage of the many trades products that made the Netherlands and Amsterdam in particular so rich in the 1600's. We ate our earlier bought foods and I got pretty flushed and red from the sun shining on the roof and the lack of fresh wind. It was a lot cooler back on the streets. By then we were an hour further and took a long stroll back to the central station area. Couldn't miss the Red Light District there of course. We joked about the local symbol of Amsterdam, the three X signs below each other in black against a red background, and how they surely must reflect the triple X rated status of the city; sex, drugs and rock 'n roll. We were walking through the red light area around 6 PM and there really was not that much to see yet. Too early!

I thought about my friend who passed away a few times and how sad it is that I could never take him out like this. But it is what it is.. I will admit that I'm not easily burned to get out of my steady life habits, but these day trips were so  enjoyable. Glad and grateful for these sort of experiences with someone who never makes the slightest problem about need for walking in the shade, having fan or airco on, Spanish Inquisitions on the menu cards, requests not to spray perfume or deodorant before heading out, and the list goes on. And for understanding my grumps when on fire and when having a hot burning face. Luckily my skin behaved 80% of the time. 😆 A true Indian Summer!

October 28th 2017

On happiness

I read something about positive psychology and how applying it can affects us. There was this study where researchers took a group of 75 year old men to a cabin in the woods (not the start of some horror movie by M Night Shamala). They had the men bring only clothes that they wore 20 years ago. They had the cabins set up like it was 20 years ago, when the men were 55 (furniture and electronics from that time were in the cabins).The men had to talk to each other and helpers about aspects of life like they were back 20 years ago (so they would discuss current events that happened 20 years ago, acted like they did the job they had 20 years ago). Even the magazines and books in the cabins and clubhouse were from that time, and their name badges had their picture from 20 years ago on it. Basically it was like the movie Back to the Future. After a week they tested the men and discovered that they had 10 percent better vision, looked younger (even people that didn't know about the study who were shown pictures of the men before the week and after the week said the men looked on average 3 years younger), the men also showed improvement in strength, memory, intelligence. The mind can apparently be a powerful thing. 

The past always does seem a better place, even when in reality it probably wasn't in many ways. I find myself reminiscing from time to time. Missing the uncomplicated 80's as it seemed. Cooler stuff, the films, the freedom - but there were also a lot of problems then too. It's relative I suppose. It's not necessarily about what's real though is it - it's your perception of something that affects your mood and physical body. It's all in the mind. The past often seems a better place. We have a tendency to remember the good things and forget the bad. It goes as far as people actually enjoying the things they did more in retrospect, than when they were actually undergoing the experience. It's like children; they are often not aware that they are happy, when in the moment. They feel good, but they are not consciously realizing that they are making happy memories as we speak. They just are having a nice day and feel elated perhaps, but looking back, they might realize that they were happy at that moment. That happiness is a construction, in retrospect, however. Relief can also be translated into happiness in our minds. Maybe happiness is a mere memory in itself.
And you can also create happiness after the fact. We sublimize the good parts of a memory. Maybe happiness is nothing more than specific moments, for instance when you see a group of birds flying beautifully through the sky; you stand still and through a series of coincidences you are temporarily part of something bigger. Something that also brings beauty.

Often happiness is only visible anyway once it has passed. I do think being entirely immersed into something is often coming closest to happiness. For me at least.  Happiness should also be a passer by, although many people think that happiness should be a permanent house friend. I think people would find it hard to define what happiness is really and it does sneak up on you sometimes without  you realizing that's what it is. It's one of life's little mysterious pleasures. Looking back the 80's were fantastic. At the time however there was depression and financial hardship and a great divide as well. But at least we had a cool subculture then and awesome dress code and hair style and no social media everywhere. Maybe some things were really better in the past?

I can understand how some people see deeper meanings and connections there and contribute it to a higher being with a higher plan. I think its more about bad luck or the patterns we create for ourselves and the risks we take in life, but some things are just coincidence. Accidents, leaving home a minute later than normal and being crushed to death by a swerving truck for instance. Besides, this half full / half empty approach of some people seems a bit binary. What about the anxious nihilist social realists amongst us? (Read: neurotics). My glass is at 70% capacity probably on most ordinary days, and I'm sometimes worried what is in the glass, is it a good thing or a bad thing, is it emptying or filling over time, how ethical is the whole thing, should I be guilty that it is mine, can someone stop me from thinking all the time, and at the end of the day does anything matter? And if there were no suffering, how could the desire to be happy arise?

It's strange anyway, to me, this Western ideal of cheerful, happy, or extroverted as the preferred state of mind. How can one experience true happiness if one is supposed to be "happy" all the time? What about people who put on a facade as the gregarious life of the party when in fact they're only adhering to societal dictates and not really "happy"? Western societies tend to think the loudest and most extroverted person as being the most interesting person in the proverbial room. In East Asian culture however, that just means you're a loud, obnoxious, attention-seeking person who's really not that interesting.

A friend wrote me about all this:
"I’m thinking that your occasional bouts of nostalgia are due to your lamenting the loss of a particular state of mind. Are we truly yearning for a time before Wi-Fi? A time when HIV was a pandemic, Ronald Reagan was President, and the Berlin Wall had yet to come crashing down? Probably not. Maybe former members of the Stasi do, but certainly not normal people such as ourselves. No one misses school, for instance. We do miss the stability of having a schedule that is beyond our control, however. Knowing where to be, when to be there, and when you can leave. We were institutionalized!

Back then, it was our parents that were the ultimate authority. If something fucked up, they’d fix it. If we had a problem, we had the option to mention it or not. If we chose to do so, then we knew they’d take charge and see that it was sorted. Did the 80s have better music? Probably. Better movies? Doubtful, but possible. We’re not missing Duran Duran and Arnold Schwarzenegger movies. We’re missing the time when we could enjoy Run DMC and Steve Martin without worries.

It is for the best. Imagine the soul-crushing nature of being aware that you’re happy in the moment, and then have it end!

Success being a choice or controlling one’s own destiny is not so much imposing your will upon the universe and having it respond favorably. It is learning to appreciate the small thrills and triumphs. If it were a matter of deciding that you want to be a millionaire and then making it happen through force of will, it would be a much simpler achievement in life. It can be as simple as an abusive parent that also makes breakfast on Saturday mornings. A time of normalcy in a week of hardship. Maybe it was saving your pocket money to buy a comic book after school each day, or something similar. The small moments and things within them that helped you to maintain your sanity. Maybe you’re busting your ass to make rent and keep the lights on as an adult, worried that you’re not moving ahead with your life as you had once hoped. Yet you take the time to do something which makes you happy. Baking muffins, or talking to your cats. Everyone has their moments that make the day go by a little faster with a little less hassle. Some are aware of them, some may not be.

Being successful is learning to do what you must in order to do what you like. Mel Gibson may be a millionaire, he may be famous, but he has to be one right miserable bastard. Being a wealthy celebrity is likely far more hassle than it is worth when you think about it, and I’ve no doubt a lot of them are envious of us. Being able to go grocery shopping without being mobbed. Being able to visit a sex shop without it being on TMZ. I don’t doubt for an instant that a lot of Hollywood celebrities would much rather work at a Taco Bell if it means they can tuck their children into bed each night.
If you have those things, then you can control your own happiness. You can’t measure your wheat by others’ bushels. Perhaps some would deride that as thinking small, but we’re small people. Our lives mean nothing more than we decide.

People that attribute cause-and-effect to a divine plan seems to not understand how causality works. If anything is going to prove the existence of a demiurge, it is the trillions of trillions of dominoes falling at any given moment. It is impressive. You want to look at it as a forest, not individual trees. One can only image the patterns we could see if we had an overall view of the dominoes as they fall, irrespective of distance and time. Yet they’re interlocked, bringing about happenstance.

I’m going to go so far as to say that the Western ideal of being cheerful is our patriarchal bent. You’d be surprised at the level of emotional repression that we’re expected to undertake. Man up! Act like a man! When you bury anything that could be construed as emotion, all that is left is the cheerful Stepford Wife attitude. Women are caught up in this because the opinion-makers of the past were prone to seeing women as emotional and that is just distasteful. Women aren’t necessarily looked down upon due to this, but it certainly contributed to the concept of a weaker sex."

I have read Nietzsche in the past, as he has a very strong opinion on pretty much any topic given and was pretty verbal about them too, and he used to say about happiness that it is good to withhold yourself something at times. Radically and for a certain time, because when you find back the thing you renounced, it will feel almost as if you discovered it yourself. And people feel pretty happy when they feel discoverer of something. He warns us to not lay like snakes too long in the same sun. Maybe this explains why after a bad health period, I can feel so bursting with energy and happiness when I have some good days again? It's like you appreciate things much more, cliched as it may sound.

Nietzsche thinks that the road to happiness is to admire yourself. And that we do not really love most people, but that we love the expectations that we ourselves have of this person. A single joyless person is enough to make an entire household miserable, whereas happiness is by far not as contagious. How strange. Maybe that one is like the strange phenomenon that 9 compliments can be overshadowed or simply erased in the mind by one criticism. We are made to long for things, less so to actualize the thing we long for. A kid can look forward all day to staying up late that evening, and it will give shine to his entire waking day, but once it actually IS late in the evening, it only fights to keep his eyes open. 

About seeming deep, or appearing deep, he had strong opinions too, ones I agree with as I hated this phenomenon at university. Those who know that they are deep, will strive for clarity. Those who want to appear deep for the outside world, will strive for darkness. Because the mob holds everything for deep (waters) of which they cannot see the bottom. In university, some people dress up simple theories with the most outrageous academic terms, making it seem ten times more impenetrable than it really has to be. While others use simple words and explanations to give insight in complex matters. Maybe this is why Neil deGrasse Tyson has become a popular celebrity in the past few years, as he makes astronomy and astrophysics simple. That is not to say that everything should be dumbed down, but writing for an academic journal is not generally intended for public consumption. A person that will deliberately attempt to confuse the reader is looking to cultivate a personage. Last thing on Nietzsche, I remember him writing something profound about the human spirit and its desire to suffer. He would rant and rave towards all those millions of people who are longing for something to do, so that they no longer have to bear the boredom of being themselves. They cannot find an inner motivation to do good, and are constantly awaiting outside impulses and triggers to come into action; for instance the screaming politicians and the artificial ' emergency states'  that are declared by them. The masses need those to feel longing to act. These young people need motivation coming from the outside in, and their fantasy is ready to turn any bad news into a monster, which must be combated with another monster. Think about the news about Trump or Islam fanatics in our modern times. Nietzsche finds these type of people needy and would rather see these people finding their own inner motivations to do good or come to action. Most do not know what to do with themselves though, and thus they require other peoples unhappiness to feel something themselves. Always needy of others. Well, that is what he thought back in the 1800's.. He’s not wrong about this. Lacking the moral character to be compelled to do good by instinct, some people wish for an outside influence in order to appropriate a purpose.

My friend wrote about this: "Maybe we want happiness all the time because happiness used to be a real thing. Modern society is missing so much that our parents and grandparents took for granted. When being a high school graduate was enough to have a career, then job satisfaction was possible. It may have been hard work, but it was adequately rewarded with a wage that could reasonably be expected to sate the material expectations. You had job security, whether it was due to union membership or the simple fact that off-shoring wasn’t a routine occurrence. You could buy a house. You could own a car, and even see yourself buying a larger home in the future, a better car every fifth year. You could afford a college education for yourself or for your children. You bought a television. You bought a comfortable sofa. You went on holiday some years. If you wanted a camera, you saved up and bought a camera. Maybe a pool, if that was your thing. The difference between then and now is that you simply had to work for what you wanted in the past. Maybe a new car wasn’t in the cards this year. You had to replace the roof on the house, or your kid needed braces. You put it off until next year, or the year after.

Now, you could work 36 hours out of every 24 and it still wouldn’t add up. Denied outright home ownership, we borrow money to create an approximation. We don’t have the fixed-rate mortgages of the past. Denied an affordable education, we borrow to create an approximation. We’re saddled with a lifetime of debt at usurious interest for an education which is no longer guaranteed to create upward economic mobility. In a gig economy, too much education is a definite anchor."

Maybe for a lot of people, life is suffering. At least at some point in time. Even desire has suffering contained within it, for we might not get what we desire, we can never keep what we desire, and anything kept for too long we grow tired of (imagine eating the best pizza, but then imagine having nothing but the best pizza everyday, eventually you would want something else, even if that something was a bad pizza). Without suffering, happiness would be unidentifiable and probably non existent. But modern times has pretty much messed up our expectations of happiness in life. We want it all the time now. And social media shows us only the happy highlights of our friends lives, so we are further reinforced in the notion that happiness is a lifestyle and a choice now. Only 'losers' do not have that. Hence all the young divorcees and all the restlessness and narcissism under today's generations. Happiness has to be felt every single day now. Very warped take on life, if you ask me.
When we work or focus on others we do lose ourselves for a bit, and all our own obsessions and such. It is good to get distractions. And concentrating on work you find interesting, or letters to write, can be equally rewarding. Something to feel productive. 

Alain de Botton says that we are more likely to envy people who we consider equals. And it just 
happens to be the case that in the past century, the old caste system, the hierarchy where people used to live in, was broken down. The modern world is based around the idea that we're all essentially equal, in terms of rights and opportunities. Unfortunately, in the old world you didn't have to feel humiliated by all the riches and success that those in a higher caste system had. If you were a laborer, and came from a family of laborers, you did not expect to become as wealthy as the aristocratics in another part of town. It didn't make you anxious or insecure. It might have made you angry with the social and economical injustice and inequality, but it was not a personal failure of you to not belong to that level of riches. But nowadays, everyone is supposed to be equal, while there is still so much inequality around, and it becomes much more difficult to not feel bad about yourself when you see the successes of others around you. You are supposed to have the same opportunities and rights as them, yet somehow you failed... This is making the modern man statistically more unhappy than in the past. Now there are no limits to what we legitimately can expect from life.

Equality and envy are linked to each other. In a society of equals, it's natural for people to want what others have. 3% of Americans in 1970 thought that a second TV was a necessity. Nowadays it's 75%. A 2nd TV went from luxury to decency to psychological necessity. It might explain why greater wealth might not lead to greater happiness. When all the boundaries of expectancy are removed (the boundaries people used to have because they belonged to a lower class, or a middle class, or a higher class), you can see a phenomenon where the poorer people will look with envy at the riches of the rich. A betrayal of their expectations. That is not a conditioning for happiness. Maybe it is an American thing for poor people to believe that they one day can follow in the footsteps of the rich. That American Dream promise. They might, but there is a lot more chance that they won't. But it's happening over in Europe now too. 

October 7th 2017

September 29th 2017

I have felt some deep sadness and melancholia this week, after one of my friends took his own life. He had rosacea. We'd developed a friendship over it for years. Shared tips, ideas, fears, dreams and mostly we met up regularly online to watch tv series and movies we loved together. Then dissect things with our analyses. Let it stream over in our own thoughts about life. It is surprising how attached you can become to another this way. After last years death of my friend David, this death now is haunting me even more, because of the nature of our contact and the nature of his death. I also feel that I have nobody to share my grief with. Because male friends aren't interested in talking about another man for more than 2 minutes, and the women in my life didn't know him, and assume he was just like the many highly talented but over-sensitive artist types who simply had enough of the strains of life. I don't think he was typical like that, and I find the abrupt tearing away of him very hard. This has hit me like an earthquake. There is a sense of shock, disbelief, deep sadness but also betrayal. That he could leave me with a normal sounding message; it even had a smiley. Business as usual. I feel guilt also; why did I check in half an hour before he sent it, but not half an hour afterwards? Why wasn't I online to talk? Asleep, while on the other side of the world he..  There is something fundamentally different I find about mourning someone who died through illness, accident or through own doing.. 
I'm also experiencing the child-like pain from sending off more chat massages, but no longer receiving a notification that he saw it. I am still sending some messages now and then... As if through some magic realism, a miniature picture of him will light up, telling me he read it. Despite it all. I just cannot yet get used to not catching up like that. 

There is something very obsessive about death in general I found.  For me at least. I had it happen before, in 2004 when my sister died, and last year when my friend David died. Everything these people wrote me, sent me, gave me, becomes heavy with meaning and emotion suddenly. I am reading things back and come short to slapping myself while reading over some parts, because only now I see how many pressing things he brought up, between the lines, which got buried under an avalanche of chats, ideas, links. How my cheerful mood and attempts at banter might have been enjoyable, but how they also overshadowed the serious notes that were added by him. I see them now, much more clearly. Because of the time difference -if we talked it was usually well after midnight for me, when our movie or series had finished - it was sometimes hard to be 100% sharp and awake for me, given my own packed week during the day. It was clearly worth the lack of sleep, or I'd not have persisted with it. But still. I am in heavy guilt mode at the moment.

I have to think of some Hemingway books I've been reading. In his Banal Story he talks about all the romance that is going on, right now. So many people at this very moment somewhere in the world are meeting for the first time, having their first pizza, maybe enjoying the last meal of their life. Knowing sometimes that it is their last, and thus savoring every bite. People are seeing new cities for the first time, enjoying conversations with friends, riding bikes, climbing mountains, laying on the beach. So much is happening that is wonderful at this very moment. Hemingway took a moment to be aware of this. It's almost Stoic in a way; relishing your daily experiences like they are the last time you will have them. Something that will also create a sense of appreciation. 
I am not spiritual, nor religious, but still think it is a huge theme, especially in today's society; to be mindful, to have concentration, to give things the attention they deserve. Yet, I failed here. I am feeling it deeply now, while reading back the many convo's with my friend and I can literally see where I was distracted, where I was fast forwarding, where I was multitasking and where I jumped over attempts to bring up certain personal subjects. Not out of disinterest, far from it, but by being just too tired, having a racing mind because of all those other pressing things, wearing me down and tired. Since having chronic health issues, my battery is low fairly quickly in general. But sometimes, you cannot undo things. You cannot do them over, as I always assume. I can always make up for things if I want to. Unless time passes you by..

I think it is actually better to have a limited amount of friends who you can forge a deeper connection with, than the multitude of shallow friends we build up. But even with them, modern time makes most people jittery, on edge, "triggered" (ohh what a terrible Millennial's word) by the ongoing pings and pongs from their smartphones. We're all so damn important, in our own bubbles. We can learn a thing or two from how things used to be, in that respect.

I will keep my friends name private, so that I can write some things about him. The pictures of him were sent to me by him, and aren't 'googleable', from what I have found. I cannot handle disappearance well. Things need to be documented, in my life and world. he has his academic writings out there, but they are cold and clinical. Interesting, sure, but I got to know him personally. I want to write something about him here. He is Romanian but had studied on a scholarship in the USA and just finished his promotion writing, PhD., successfully.
He had worked so hard for it. Was given a good teaching job at a university. We had to screw the tv series watchings back the past months, he was drilled to work 16 hours a day. I had no issues with this, sometimes working life takes over for a bit, but surely things would get easier soon and he'd have more free time again. Surely? I still received updates and pictures, but he seemed more strained. Less boisterous. I tried to not take it personal and do my usual thing, taking distance. For some reason I am good and prone to do that, probably out of a deep fear of being rejected or something like that. Or just wanting to be one of the guys, no-drama, easy coming easy going. Now I seriously worry that I gave off the wrong vibe. That he took it as disinterest. The whole thing is making me tearful.
Reading back, the moments I actually expressed anything close to actual affection are few and far between. They were there, I am just such a rational being that I cannot even imagine that anyone would want to hear them. Yet I received them from him, signs of appreciation. I regret not shouting out NO you are not a loser. No, you're not insignificant, and not unattractive either, and not high maintenance, and not doomed for failure, and not irrevocably damaged. When you talk like a bunch of academics as we tended to do, with some political incorrect digs here and there, the switch to vulnerable is a very big one I suppose. Now I regret things and I break my mind over what happened and what he must have struggled with, unbeknownst to me. What sort of a friend does not pick up on that?? Especially since he said he didn't open up to most people. 

It reminded me of a movie by I think Almodovar, Julieta it's called, and this woman sits in the train one day, and a man tries to start a conversation with her. And she isn't interested. She brushes him off a bit. Then a little bit later, the train makes an emergency break and the conductor says that someone jumped in front of the train. Turned out to be that man. And she gets emotionally hit by it, starts to imagine that this man just wanted a friendly word, a human touch and that she denied him that and was directly responsible... I think these emotions are very natural, albeit warped. I like to dwell on things to this point too. What makes matters worse is that he and I were deep into analyses of stories. We'd dissect plot lines, motives, symbolism. About Fargo (we watched all three series the past half year and absolutely loved them, 4 or 5 episodes a week often, he said he liked this deal, that it kept something regular in his life while finishing his dissertation) he'd say for instance: "I like the series because instead of gathering all threads together at the same time and unleashing hell, somehow it develops stories sequentially and leaves space for each character to do their best. Separately, unhindered." he'd make brilliant connections, reducing series 3 of Fargo into being one big Reagan metaphor. Money is now to be made in economics, no longer in crime; the consolidation of businesses and human spirit. Mergers and takeovers are hard, bloody work. Regular people will pay the price, butcher shops will close. But the rewards, for a few anyway, will be too many to count. For the rest of us, including Mike Milligan, the "warm champagne of corporate praise" is nothing more than a mid-level desk job and a 401k.

He also liked 80's movies, with their naive inspirational films such as Top Gun, or Cocktail or even some 80's romantic movies ("I love melodrama!"). Movies without irony but full of optimism and vitality. Films in which effort is rewarded in full. No wounds, no antiheroes. He would sell them to me with the promise: "If we soon discover we can't stomach it, and that we're too far away from childhood, and that we're too corrupted by life / enriched by culture, then we give up. But what I'm saying is to just give it a try."

He would say about America: "It's interesting; in the US it's actually the rich who don't care about style, unless they are very rich or in some art industry. Yes, it was confusing at first, all those guys have gigantic annual incomes and some of them serious studies. I used to bring American professors in Buhcarest for summer schools; with a good sponsorship I was able to bring the very big names. They only wore loose worn out blue jeans and one dollar fifty ridiculous caps. I think one root is the class system. In Europe clothes used to have a signaling function. They signaled status; for centuries each social group was bound by law to dress in a certain way. Americans never cared about this, plus there is Protestantism. Quite frankly, since I am in the US I mostly only wear training trousers, but in Romania if I don't dress nicely, and walk the streets after dark, I get stopped by the police mostly."
[..] "XX Univ. has 40,000 students, roughly half girls and it's been a while since I have seen one in a dress :)) Only training trousers, shorts, or jeans. However, compared to Europe, they actually smile at you - they are not afraid. It's a safe place, America. They are also super vocal and friendly, very expressive and extrovert and they speak loud as hell. Obedient to the system... not so much the husband. And robotically hard working. That's confusing with them. Exuberance which last 5 seconds and then they look away and leave."

His rosacea was the last year mainly revolving around his nose flushing. His face had become fairly pale after IPL treatments and also after using roaccutane, although he felt it would still swell, when triggered. But his nose would turn very red and burn and swell due to a lot of triggers. His teaching also caused nose flushing (indoor temperatures, the act of standing in front of a class), and this was a problem for him, understandably. He would take several herbal and vitamin supplements, but after asking me about it he brought things back to a more simple approach: "If I were to draw a line below what you said and write a one sentence summary, I would formulate it as "more caution, and less supplements" or something like that. I use to gobble up turmeric like crazy. I'll stop for a while and see how it goes."
He was actively searching for better treatments. He wanted to have laser treatments on his nose but also experimented with (fairly limiting) diets. Raw vegetables, fish, seeds, fruits. "Dedication is part of the explanation but I think I do this also because I stopped caring. If can't have the food I want, whatever foods are left for me taste the same, raw or cooked. And then, why bother cooking."
He had inherited the rosacea from his father. His father had always been red, but back in Romania, where he came from, nobody cared. At least, nobody cared enough to call that a condition that needs treatment. He regretted not knowing sooner about rosacea, because then he could he prevented it from deteriorating. he wouldn't have spent that much time in the sun, or chosen to build a life on adrenaline (which read "stress"), he would say. He had always been slightly more red than other people, but he never cared until a year or two ago, when on top of the redness he started noticing rashes on his cheeks, felt his skin burning, and was told he had rosacea. The disease progressed fast, and he said he didn't adjust accordingly. Continued to have his usual 'one meal per day, all I can eat', which lasted 2 hours, in front of the computer. Eating histamine-rich or niacine-high foods like nuts and seeds. Not knowing that in his personal case, they made his flushing worse.
The rashes were never a problem he said. Soolantra got rid of those for him. But by wintertime his facial skin started to show edema, and his nose started to play up. Rhinophyma kicked off. He tried oral antibiotics, but they weren't able to do much. IPL treatments later did help, but treating the nose with IPL is very difficult. It stayed red. Nothing seemed to control the swelling. By this time he started to discover that his eating habits plus what he called a life built on adrenaline, were probably the main culprits. He found these triggers extremely hard to control. He found support in his Christian beliefs. Isotretinoin (roaccutane) also helped control the redness and edema further. However, the rhinophyma continued to be a problem. Both the flushing and burning of his nose, but also the overall shape of his nose had changed, he said. It was triggered daily by usual rosacea triggers we mostly all encounter. But with a big intensity. Even small variation in mood could flare his nose to be red and painful.

He had some lost loves and he considered America another lost love:

"I fell in love with America on two channels. Firstly because of its freedom. I grew up in a post-communist country where totalitarianism was grafted on a thick historical layer of patriarchal, primitive traditionalism. The anti-communist revolution occurred when I was 10. Things moved fast. My father brought a video tape player. A cheap video tape rental place was around the corner to my block. Video recorders showed America. At 21 I became a libertarian studying political philosophy and some economic theory with a celebrated and regretted professor in Bucharest. I made this into a profession and realized that America and its freedom are fragile like a puny flower in the way of the political steamroller. Glorious and fragile. Something worthy to live for, and live in, like you said, "be in America with America". Migration to America was extremely difficult. Coming to the US was possible only with studies. By the time I finishing undergrad I had been already for many years in a relationship and in love with a girl who wasn't quite motivated to leave to the US. That kept me back. I also had to work, so I couldn't study properly for a GRE that required a level of math of which I could not even dream. I literally was stumbling on the multiplication table. So my attempt at coming here failed. I made a compromise between leaving and staying - moved to Budapest for PhD. Far enough to be gone, close enough to continue being with the girl. By the time I finished that program and went back to Bucharest, everything was crumbling." 

"Once I got here, I was alone, with a PhD program so tough for me that i had no time to undress when going to sleep, and in the "city" of XX, so rural that I was looking at foxes and deer out my back window. And I was also getting old. In short, the dream had broke in pieces. By my second year I reverted to Christianity. And recognized "America" as my idol. Denounced it, renounced it etc. I will finish the program soon, but what is now left of America from that broken piece is taken by - boom - rosacea, now a year old affliction that keeps me indoors and does to us the many things you know it does. Besides, I feel too old and defeated for dreams, too old for being anywhere, and that includes America. I think I lost the last pieces of America to rosacea. Superficially, yes, I'll finish this program and stay here. This year I'll be on what they call the job market. When I got here I bought a thick book called America. Put it off until I'm free to read it and LIVE it. I feel that book is useless now. But the story of Frank's America is greater than my story of America."

Rosacea played a huge role in his life. I think it's only people like us who have this condition, who can understand how it can ruin even the best seeming lives. Especially when your face burns and flares at the slightest trigger.

"Rosacea, yes, it is a nail in the coffin. Otherwise the rest of my body is fine, craving to exercise like it used to etc. Memphis, Yosemite... sure, I've dreamed about all of these. Even with rosacea, I guess a hands-off, few hours guarded trip in early autumn is still feasible. And worth the price, especially if I won't have a family of my own. You seem to be travelling a lot. How does your rosacea cope with that? (I visited my parents in Romania last year and it was a nightmare, all I remember I did was to confuse and frustrate all around me by constantly refusing their propositions to go out and to try out foods.)

Teaching was his dream job. It's what he came there for. But rosacea took away his stamina he said,  his intensity and motivation he thought he would... radiate. Rosacea emptied the teacher's role of its vitality, he said
I wanted to live Americas all at once. And I think it is possible, if you're healthy. And if you have sufficiently diverse friends and acquaintances. But these can be acquired easily if you're healthy. What is likely to happen though is that I get a job in a small American township, and do round trips to school and back three times a week as a college professor. But that's not the America I wanted, simply because, as you observed, it is not the whole America."

To me it seemed that his rosacea and perhaps also his doom (or let's say; all or nothing) approach was keeping him from properly emerging into that 'American culture'. Which seems to me a mix-match of immigrants, extremes, rich versus poor, cities versus nature, rednecks versus vast suburbans and then some intellectuals (like in any country more or less). I got the feeling from him that he came to America with high hopes, but turned demoralized. Relationships ended, health deteriorated. He felt a passive observer, being tied down by rosacea as so many of us are; triggered by the heat, the sun, by alcohol, by passionate everythings. Whereas he wanted to experience America first hand.
To me the sense of freedom that is attached to the USA seemed to be more about the vastness of the land and the amount of nature, and not so much about the actual life there. The American people I know look at their own country very differently from me with my European pair of glasses on. More darkly, more critical, lamenting the streams of commercialism and consumerism, the cheap media, the 1% owning most, the corruption and manipulation, the flashiness. But I'm sure it totally depends on our surroundings; living in some quaint part of New York or San Francisco will be entirely different from living in the Detroit ghetto suburbs. I'm not buying the American dream much personally, it has no flashing effect on me. To me, America seems a highly conflicted and struggling country, but of course I would love to make a road-trip and see Tennessee and Texas and Yosemite park and all those wonderful stops along the way. And I come from a wealthy, super highly organized country, not from a former communist country, and I understand that Romania is still pretty poor to EU standards, it must be a different sensation of freedom than for someone from the Netherlands. Where it's all about progressiveness and freedom, just packed into a tiny bit of land with 17 mln inhabitants and no natural wonders whatsoever. My father wants nothing more than to make a road trip through the States before he dies. I like to join him of course, I know I loved New York with its endless energy and aesthetic appeal, and I am sure that the Midwest, the deserts, the plains of Wyoming, the Minnesotan winters, are all fantastic to experience some time. But living there, I have zero idealization that it is intrinsically any different from living in the Netherlands. Or France. Life can be deducted on a daily basis to very basal stuff.  But he was afraid that things would fall apart if he was not extra-careful and continued to work with great discipline after getting into the US. And that apocalyptic fear became a reality too for him, in some respect, as the person he came to the States with, had to go back to Romania. In that sense history and the dream ended.

"The second reason why I fell in love with America is because of its rawness, massiveness of civilization but also its desert and landscapes. This is what Robert Frank seems to capture [we had discussed his pictures of America, made during his road trip in the 50's, after I worked on a text on Frank for work], and probably what the Beat generation covered too, although I did not allow myself to read them yet. Why not? For the same reason: Why allow myself to go in so much depth when that depth is forbidden to me? I definitely don't want to be an admirer - an external observer. I wanted to be in the heart of things. And if not - put it off. Put love and interest off until SHE, America is interested in me."

The tragic bit is that America wás interested in him. He had a solid job, after years of studying and writing. He had achieved his dream, in a way. But his health condition was lifting along too. Uninvitedly. And a month after achieving it, and enrolling in the daily grittiness of this American life, he signed off.

"But mostly, it's my personality. When I start something I find it hard to stop. But life forces you to stop. And then, the half unfinished project persists in your soul. As time passes the mind becomes populated mostly by such resilient ruins. Since they are so many, solid and diverse, that their matter cannot be recouped, converted, reshaped or reborn into a new integrative project as they would in a more lively ecology. Then, you either freeze life and become a ruin haunting your ghosts, or you run the whole area with a giant bulldozer like religion to level it and cleanse the soul. Or is it that I lack the imagination to find a place for them into a new earthly puzzle? Perhaps. But for now the bulldozer satisfies me, gives me sleep at night... But... i think you are right that at some point life might creep back. When I go to Baltimore for a concert , and I see young colorful people and blocks of flats rather than suburbs and townhouses, I feel alive."

So now I am sad. I got to know this man and his fears and dreams, we had some serious talks as represented here, but most of the time we simply has banter and fun, reviewings things we watched, bashing things that happened in our lives. He was mostly lighthearted, maybe because of my approach, maybe not, I do not know. The only change came the past month or two. He had trips, he had his teaching job now, he was severely pushed. He sent me messages of staff, the way he was pushed to perform and I accepted that our days of night series watchings were over for now. And I'd not been responding as much the past months either, as I was busy with work, health flares and things as usual and respected his space.

I missed some rare movie watching dates; it was summer, I was travelling myself, we had lost our strict habits. I apologized, he apologized when he couldn't make it yet another time. He started to sound very tired. And to make matters worse, I missed his last messages. I also missed some social media comments from him about not doing well.. Only read them later. Made me feel very sad afterwards. Like I failed. And now it is a full stop. It's really haunting me. I read things back and see hints and double messages everywhere suddenly. Selfies he sent that now look macabre suddenly instead of goofy. Photo's from a blue sky seen from his roof window. A Dead End road sign he pictured. And I keep wondering; what if I just had been online that night and responded. I realize that some people are hard wired for depression, that some things cannot be prevented. That I cannot make my own importance any bigger than it should be, which is probably very small in this whole story.

It's the same sort of guilt I had over my sisters death, all over again. I missed signs there too and let her talk me out of bringing her to hospital with her suspected "heavy flu" (was appendicitis). He also knew about Davids death last year, a person fairly similar to him in many respects. How could he do this. When I talked with a female friend about it, as well as with my mother, they both were quick to shake me out of my self-centeredness; people do not take their life because you (me) were online half an hour too late. They don't do such a thing because you failed to emphasize how much you appreciated him being in your life. It's fascinating why we even take on blame in such situations... I had to read about this. This triggers my obsessive side big time. I've been reading about it most nights of the week actually. As if reading about suicide, the technicalities, somehow brings you closer to the person. I'm starting to feel like some pathologist now. Reading accounts from people who tried and failed and how they experienced the act and also the leading up to such a thing. It's graphic but I like to really go deep in, and somehow I feel better at the end of the tunnel. Like piecing back a puzzle. My own interpretation of that puzzle, of course. And of course I don't know this person from living day to day together either. I only know what this person chose to tell me.  

Yet, his death reminds me of another death, and another, and I was wondering the other day if this is what adulthood is like. Deaths and deaths reminding us of other deaths and other people that left their marks. Years being tied now to 'The Year that X Died'. It is like a single wave that impacts so many lives, in his case across continents. Yet another person joined the club of brilliant people who will never age, who will always stay thirty-something, forever.

A friend comforted me by saying that most humans go through a challenging despair in their lives, and must decide how to cope with it. If we begin with the premise that we don't deserve " this", whatever this is; or we deserve happiness; or that suffering is intolerable and we should not be
included in that world; or worse, that we deserve to be a part of the world of life that is Happy, then we suffer great delusion and we are bound for death spiritually or physically or both. God or no God. Life isn't fair because it was not designed to be fair. It was not designed to be happy. It was designed for life. Life to be lived, on life's terms. She thinks that life is about suffering and challenges and pain and hardship, and that the choices you make with that will give you great joy or unbearable sorrow. Life does not guarantee you a damn thing. "What a wealth of humanity you have encountered. Virtual as it may be!"

I'll finish with a few Bukowski quotes: 

“Some people never go crazy. What truly horrible lives they must lead.”

“I've never been lonely. I've been in a room -- I've felt suicidal. I've been depressed. I've felt awful -- awful beyond all -- but I never felt that one other person could enter that room and cure what was bothering me...or that any number of people could enter that room. In other words, loneliness is something I've never been bothered with because I've always had this terrible itch for solitude. It's being at a party, or at a stadium full of people cheering for something, that I might feel loneliness. I'll quote Ibsen, "The strongest men are the most alone." I've never thought, "Well, some beautiful blonde will come in here and give me a fuck-job, rub my balls, and I'll feel good." No, that won't help. You know the typical crowd, "Wow, it's Friday night, what are you going to do? Just sit there?" Well, yeah. Because there's nothing out there. It's stupidity. Stupid people mingling with stupid people. Let them stupidify themselves. I've never been bothered with the need to rush out into the night. I hid in bars, because I didn't want to hide in factories. That's all. Sorry for all the millions, but I've never been lonely. I like myself. I'm the best form of entertainment I have. Let's drink more wine!” 

“For those who believe in God, most of the big questions are answered. But for those of us who can't readily accept the God formula, the big answers don't remain stone-written. We adjust to new conditions and discoveries. We are pliable. Love need not be a command nor faith a dictum. I am my own god. We are here to unlearn the teachings of the church, state, and our educational system. We are here to drink beer. We are here to kill war. We are here to laugh at the odds and live our lives so well that Death will tremble to take us.”

My skin is burning of course and irritated;

September 9th 2017

My skin burning and flaring have calmed down a few notches, but not a whole lot yet. It's raining and cold here though, so I have been out and about, catching up with some friends and doing things in town. Back to a more normal lifestyle therefore, and less huddled up behind a ventilator all day. I need to see a gynecologist soon for the endometriosis testing. The MRI I was supposed to have next, they told me I would need to use a dye for it called gadolinium. They inject it in your vein and it circles round your vascular system and into your organs, and helps make the MRI imaging more detailed and clear. I read up a bit on it, and found some new research that showed that gadolinium has been found to remain in the body after MRIs, even after a prolonged period of time. It was found back in brain tissue, bone and skin tissue. 

"It is unknown whether these deposits can lead to adverse health effects. The FDA has asked doctors to limit the use of Gadolinium contrast agents to times when necessary information is made available through its use."

It's too soon to tell if these deposits have any effect on health, but they are metal elements and I really do not want metal stored in my brain and skin cells. Have such an overactive auto immune system, and so many allergies. Even dental fillings cause my face to balloon and turn magenta. Imagine actually reacting to this substance, and then having a percentage of it stored in your head afterwards? I would worry about it triggering more allergic reactions or auto immune activity. And given that this has just been discovered by a bunch of Japanese scientists, and considering that the implications of this substance sticking around in the body for a small part has not been investigated either, I don't want to use it. I have so many metal allergies, it seems simply silly. I called radiology at my hospital about it and finally spoke to the doctor working these machines, and he also said that I shouldn't take that gamble then, that it sounds unwise to use it, and that there are actually a few alternative dyes they can use. Not mainstream knowledge but there are alternatives possible. Phew! I feel like a walking hypochondriac at times, but I had it happen so many times now that foreign bodied substances had to be removed again due to an allergic reaction (solvable fillings or gelatin sponges for instance, fillings) that I'm trying to prevent these things, instead of having to treat the consequences later on. 

I read a review for a filling product called Juvederm online. This girl in her early 30's had Juvederm injected into her cheeks, because she had lost a good deal of weight and wanted her drawn facial features plumbed up a little bit. Safe procedure, often performed, Juvederm is a chemically made product, but contains hyaluronic acid, which is a naturally occurring component of skin. So this girl had a bad reaction. I will copy her ordeal, described by herself, here, because she describes the hell and agony she goes through ever since, dealing with nerve pain in her face and even skin redness and burning (it looks like the affected cheek is developing rosacea too).

November 13th 2015  

"I am a 34 year old woman, working in the media industry in London. As a reward for losing over 2 stone in weight, I decided to get .5 Juvederm Voluma in each cheek only, as I felt I lost a lot of weight from my face, which I thought made me look older. The doctor used a cannula, so only one incision on each cheek. My main goal was to see how it looked for my wedding in 2016. It has been the biggest regret of my life. A top Harley street nerve specialist diagnosed me with facial neuralgia (nerve damage) and I can't begin to explain the pain I feel on a constant daily basis. I pushed back my wedding until 2017 as I physically and emotionally cannot organize a wedding right now. I wasn't naive in getting this procedure done, I researched for a year and got recommendations of a former ENT surgeon who was very experienced in facial aesthetics. I knew someone who went to her and her face looked so natural and the clinic was reputable. The procedure did not go according to plan, the doctor really struggled on my left cheek to get the product in and she got frustrated and pushed through. I knew instantly I was in trouble. My cheek stayed red and inflamed for about 4-5 weeks and then the pain started to kick in. I now have physical scaring such as broken veins and redness on my once clear skin. It was the scariest time of my life. I had intense burning, stabbing, stinging and tingling from my cheek to my eye bag right up to my eye brow. The pain was so bad around my eye I thought I might lose my sight as I did not now what was happening to me. I had visions of a huge abscess forming under my skin and I thought I might lose my cheek. The anxiety and panic attacks were horrendous. My doctor was useless and actually told me I had somatization disorder (it's all in my head) and referred me to a psychologist. 

My GP said it looked like nerve damage & said it was typical of someone in the aesthetics industry to blame my pain on a psychological problem. I went to eye surgeon to examine my eye who by chance was also an aesthetics doctor with 20 years experience and she said she could help me. I cried with relief. She said my eyesight was fine and that I needed to get rid of the product with hyalase as it was probably sitting on a nerve. I was nervous as I read good and bad reviews about hyaluronidase so I got a patch test first in my face and it was fine. I got the filler removed but it did not help the pain and I spent £600. When I told the eye doctor it did not help and my face still gets intense pain and still gets red all she said was it must be rosacea in an email and said "all the best". 

I am now on Gabapentin 3 times a day since September but it only recently started to work. I still have constant pain but it is not as debilitating. 
My advice if you want to get this done:
- Only go to a board certified dermatologist with years of injecting experience. (They are more expensive for a reason and you can't put a price on your health)
- If you are saving up money to get this procedure done then I strongly suggest you do not follow through. I have spent over £1000 trying to get medical help as private health care does not cover issues arising from cosmetic procedures and the NHS takes too long. I was on the waiting list to see a nerve specialist for months.
- Ask about there after care service if something does go wrong.
- Really think about the impact a wrong procedure can have on your life. The pain has affected my work and my relationships with my partner, friends, family and I stay in bed when I can. Luckily I don't have children that rely on me. 
- DO NOT DO ANY INJECTABLES less that 6 months before a big event such as your wedding. It could ruin your special day if the procedure goes badly.
- If the procedure goes wrong the injecting doctor won't be the one that helps you. They don't want a law suit. I have seen the medical professionals that see the horror stories. Eyesight loss, nose cartilage loss, cheek absences and nerve damage. It's not as uncommon as we are led to believe. 
- Silence is the cosmetics industry biggest weapon. No one wants to shout about the damage suffered by a procedure done by choice out of personal vanity. 

I will never touch an injectable again. I learned the hard way. I have been to over 20 medical appointments and I am seeing a psychologist to help me cope with the pain and the intense guilt that I feel having chosen to do this procedure. I have never felt so alone."

End of year update.
24 Dec 2015 

"I wish this post was letting everyone know that things are improving and I am feeling much better but instead I am in debilitating pain. My eye feels like it will fall out of my head, it's like lots of tiny needles being pricked into the back of my eyeball, all day, everyday. There is no break, no downtime, no medication to take the edge off, nothing. I haven been like this for weeks now, I was hoping it would die down for Christmas but no such luck. As I write this I am in bed, while all my family are downstairs laughing and enjoying the Christmas spirit. Meanwhile, I am in despair, thinking how I can face 2016 with this pain and how can I get the strength to carry on. I still can't believe I have nerve damage from a procedure where nerve damage wasn't listed as a side effect on the consent form, Allergan even told me nerve damage isn't listed side effect on there literature. It will be 7 months of pain on 9th January, it's a long time. I just hope and pray I recover 100%. I will never trust a doctor again. To anyone experiencing this type of pain, my thoughts are with you this Christmas. It's so difficult to stay positive but we must try. Merry Christmas X"

Pain Management Specialist
14 Jan 2016  

"I went to see a Pain Management Specialist this week. He agrees with my Neurologist that I have Post Traumatic Trigeminal Neuropathy. I asked him what my chances of recovery are and he said he really can't give me an answer. He said only time will tell if it's permanent or not. He is changing my medication from Gabapentin to Pregabalin which has more scary side effects. So afraid what these types of medications are doing to my body but I am desperate for some pain relief. I have no choice, I deal with constant daily pain. He warned me that these might not work either. I just want to scream from the top of my voice "what has this doctor done to my face?!!!" My heart and spirit are broken :( If I had one wish in the whole world it would be to turn back time. I used to donate blood on a regular basis as I have a universal blood type but I don't think I could ever face a needle coming near me again. I have lost all faith in the medical profession, especially with how I was treated. I can only dream of being pain free again, as reality is the complete opposite right now."

26 Feb 2016 

"I'm still suffering from redness and swelling caused by the nerve damage :( I have begun a new medication called Pregabalin and I think it's made a slight improvement. Still constant pain but not making me feel suicidal with pain, which is good!!!! Fingers crossed this is a small sign of healing and not just the new medication."

9 mths post procedure
8 Mar 2016 

"I spoke too soon! ???? I have been in constant agonizing pain since Feb 28th. I can't sleep with the pain, I can't eat & I can't think! I spend most my day crying in the toilets at work in pain, nothing I take works, nothing! I feel like my eye is going to explode with the pain, my cheek is all red, swollen and hot from the autonomic changes caused by this nerve damage. The Pregablin isn't working at all. I am going to see my Pain Mgt Specialist tomorrow, I hope and pray he has a solution. Please don't anyone get this procedure done, you could end up in agony like me."

10 months post procedure
25 Mar 2016  

"In terrible pain, all day everyday, for the past few weeks now, I have been in bed all day this Good Friday. (So much for a happy Easter!) My cheek and eyelid have been swollen for the past few weeks (you can see from my pic I can't open my eye fully) and my cheek is red and hot. I went to see my pain management specialist and the first thing he said when he saw me was "holy s**t look at your face!!" ... which was comforting! Lol! People in work are asking me what has happened to my face, it's so hard as no one knows what has happened to me. Only my boss knows I have nerve damage, however she does not know how I got it! I am too ashamed to tell anyone the truth. :( I emailed my doctor asking for an apology for all the pain and suffering I am enduring from this treatment and for telling me my pain was pychological but she has chosen to ignore me. It's disgraceful and upsetting. I can barely touch the left side of my face without causing intense pain. I can't even wear my sunglasses as they trigger pain! I still can't go to the gym or exercise, which makes me so depressed, I used to go 3 times a week! I can't lie on my left side. Takes me ages to wash my face, not to mention applying makeup takes me forever as I have to be so careful. The medication I am on makes me so tired and jumpy but I have no option but to keep trying Pregabalin. 

The one thing I am proud of is that I haven't taken sick time off work, if it's bad I can work from home and when in work I just leave my desk and just cry in the toilets with pain, it's all I can do but I am trying to stay strong and not lose my job because of this! (My company is going through redundancies so too afraid to take sick time). I feel under so much pressure and stress, it's been 10 months now and I feel like this nightmare is no where near the end! I constantly ask the question "Why me?" but doesn't everyone when things don't go as planned!! I am still trying to remain positive that I will recover and I will get my old face back! I continue to see my therapist who helps me manage the pain and I continue to write here as it helps me and if it stops one person from getting this (evil) procedure done then I feel I would have achieved something! Hope is all I have now that someday I will be pan free x"

Diagnosed with permanent nerve damage
21 May 2016  11 months post

"Well, that's it for me, nearly 12 months since the injury and I found out my quality of life is forever ruined. I saw a facial pain expert and he diagnosed me with permanent nerve damage a few days ago and he informed me that absolutely nothing can be done to reverse the damage. Surgical and non-surgical procedures are too risky and carry a high risk of making my pain even more unbearable. This means that every time I even blink, it will cause me pain on the left side of my face, every minute of every day, for the rest of my life. The strong medication I am on helps with the severe pain but not all the time and it does not get rid of the constant pain. I explained to the doctor that I wanted to start a family after my wedding next year and he just shook his head and said it would be very challenging as I can't get pregnant on the pain medication and I may not be able to cope off it. This injury could rob me of becoming a mother. I feel like someone has died and my heart is truly broken. I have no more tears left to cry :("

I can really relate to her... My rosacea and skin was so much better before I saw this practitioner in England back in 2005 for my first IPL treatment. He ruined things in one sitting, I since flush and burn all over my face, everywhere he zapped, including my chin. Went from grade two flushing to grade nine, basically and given how my whole world and life resolves now about keeping my face cool and not too heavily burning, it has negatively affected my entire life. No kids, no energy for the type of job I would have liked to have (and was offered). So often you think back to that fateful day and wished you could go back and reverse the choices you made. Like this woman, my dr (Mervyn Patterson, a smooth sleek talker), also blamed the obvious on psychological factors, out of his responsibility. Coming in with a pale face and a problem with very specifically triggered flushing, then seeing me back after his IPL with a swollen, red/purple gob, and he blames it on my psychological state and sent me on my way. That's the kind of service you receive after you paid for the procedure and have become nothing but an annoyance. I hope this woman can somehow control her facial burning. Nerve pain is very difficult to treat unfortunately.. I felt her despair while reading her accounts.

I still use a humidifier by the way, when my skin is particularly dry. Moisturizers and topicals burn and make me more red, so the best way to moisturize my skin from the inside out, has so far been to make sure the indoor air is not too dry. I've tried quite a few along the way, and the cheaper models do work, but also leak a lot of water damp and dew on the ground and ceiling. They also create a visible mist, which is not great in your house. Best so far, and the one I've been using for over a year now, it the Honeywell cool mist humidifier. It's quiet, it breaks the water down in super small molecules and doesn't create a visible mist, and it does not leak on your floor or create damp on your wall or ceiling. It measurably makes the indoor air more humid (I use a hygrometer to check), and also has a special light that kills a good part of the germs in the water. Only downside is that it comes with a filter that needs replacement once in a month or two.

Other than this, I have used the past weeks in which I was a recluse with a face on fire behind a fan, to catch up with the tv series game of Thrones. I have written about it before on here, and I was really a big fan of the first four seasons. As a historian I loved the realistic course of events (minus the dragons and such, but even they are part of old European folklore and mythology, so not thát much of a stretch). The show is loosely base don the English war of the Roses, and many historic events have served as inspiration for the epic tale of Game of Thrones. But they are based on books, by George R. R. Martin, who is a very good writer. He hasn't finished his book series yet however, and is still in the process of (hopefully) finishing them, so the TV makers had to start writing their own dialogues and plots later on. It didn't start to show until after season 5 I think, but this last season 7 was really not to my liking.. I am not charmed with this season 😞 I like that they have picked up the pace and the action, but it has really severely come with a prize, for both character development and quality of dialogue. I hate the writing from D&D. It showed pretty much since season 6 for me, and this season is even worse. No interesting sharp dialogues anymore, Tyrion has not said anything of wit or intelligence for a few seasons now (I think they just cannot write as well as Martin and therefore just let him hang in the background now, or give poor advise). I've heard so many cheap dick jokes and "We are fucked" all round this past season, it's just painful to my ears really, compared to the really interesting and eloquent lines characters used to have in seasons 1-4. 

I understand that people hate Littlefinger and are happy with him being gone, but the way in which was just sad. I felt for Littlefinger; once the mastermind of this series, now reduced to a pleading puddle of patheticness, outsmarted in the simplest way by two badly acting girls. He was being completely useless in Winterfell which is an absolute shame to his character, (like Varys). It is like the show writers completely forgot that such men used to have great significance, with their networks, information and strategic thinking. Instead, we saw a dumbed down Littlefinger. who knew that Bran can see past and present, yet he messes with the Stark girls instead of running far away to the Vale or Essos on the pretext of getting more men to fight WW. Instead Sansa couldn't even kill LF herself, as a true Stark judge + executioner is supposed to do, and neither did she think of at least imprisoning him for a little while, to tap his intellect, knowledge, and wealth to protect the North.

He was also short changed there. The old Lord Baelish wouldn't have become a pleading puddle, I think.. He could have instead said to save himself if he was still being written in character:
1. Where is my trial?
2. I demand a trial by combat, I name ? as my champion. ? = someone in The Vale, they contact ? in the Vale who tells Sweetrobin that 'Uncle Petyr' is being betrayed by nasty old cousin Sansa, whom he saved at the BOTB = Sweetrobin ORDERS the Knights of The Vale to escort Baelish back to The Eyrie.
3. I did NOT kill your aunt, as YOU have already testified when I was first questioned about her death - were you lying then or are you lying now? why should we trust anything you say? 
4. Where is this letter? how convenient there is no copy and everyone who read it is dead
5. Your creepy crippled brother spouting non-nonsensical stories about things he could NOT have POSSIBLY witnessed is NOT proof
6. Prove that dagger is mine, do you have a receipt?? 
7. Jon Arryn died of natural causes, you have NO PROOF I had any part in it. 
In short: These proceedings have no due legal process and You have ZERO EVIDENCE.

None of this however. Completely out of original character and I blame the whole shebang on the

writers wanting to speed the story up, skipping over too many details and not having the powerful writing talent that Martin has to make anything more of it than they are doing now. Which is mediocre. You can tell that they no longer have novels to pull clever dialogue from. 

The sisters do have the ultimate witness with Bran. Shame he wasn't used, therefore! 
I mean, imagine this scenario:

Littlefinger is charged and shouts "I deny it". Just when he is about to prove them to be idiots, with his excellent manipulative improvised speech, just then, Bran comes in the room/hall/whatever it is called they were at. 
Bran: "You told Ned Stark.............................."
Littlefinger: "What proof do you have?? Mumblings of a half sane boy?"
The crowd mutters and seems to agree with Littlefinger and the Starks are pushed into the corner (ok ok, not in their own Winterfell most likely, but there could be mumbling and muttering!). But then Bran starts to explain extreme details about the lives of everyone in the room. Things he could not have know --> people in awe and fear at the same time.
Bran: "You see, nothing goes unnoticed gentlemen, and this man...." blabla etc.

That would have made for a more exciting trial if you ask me. Overall Littlefinger's death was far from satisfactory. I wasn't expecting him to be the king on the throne in the end, but his fate should have been more elegantly handled. And with regards to Bran; as it stands now, virtually nobody listens to Bran, who now sees and knows pretty much everything with his paranormal visions. I would have sat beside him for 8 hours by shift and make him explain everything in order to gain advantage. Even regarding the technologies of making Valerian steel etc. The guy is a walking oracle! Yet he is treated like a brain-dead spastic.

Another complaint I have (and I know this is just a tv series lol, but after so many seasons, once can get attached and invested in even a tv series) is that Littlefinger and Varys were true political players and flawed human beings, unlike the superhero 'super beings' that some others have been turned into now. The show has become the story of good vs evil, with 'good men coming together' which doesn't excite anymore. It has lost its original perk since season 5: showing realism, and the real world which was dark and shady. After season 4, D&D started making it more of an entertaining heroism tale than a logic and realistic one. Especially in the last season they let go of one of the most defining elements of the series: actions have consequences. Main characters can actually die, if they make a mistake. Not anymore, we now get death teasers, and heroes being saved at the last minute. In that sense things have turned into your average, predictable Hollywood storytelling. I liked the old style with long winding story telling and real anticipation much more than this more predictable Transformers version. I am rooting for the Nights King to win this whole thing now, that's it! 😝

I also can't look past how bizarrely things have gone after cutting characters and storylines only to merge some characters with others. You can't possibly justify the need to have Davos explain in season 7 that Dragons breath fire. And then there are the plot holes so big they could sink the Titanic. Most people don't care that everything is faster now, and that a raven flying from north to south no longer takes 5 episodes, but 5 hours. But episode 6 was so lame in some ways that it interfered with my enjoyment..
- Why did Danaerys find it necessary to help all of sudden, after clearly being skeptical in previous episodes?
- How long were they on that rock? They should've died from hypothermia long before Dany arrived. I think I would have preferred that.
- Why did the army of the dead not use arrows? 
- Why do all of this anyway? Just to show Cersei? The old Tyrion would have known that it would have made no difference.
- Why did the army of the dead just happen to have huge chains with them?
- Why didn't Jon just get on the goddamn dragon?
- And why didn't Dany order her Dragon to just kill the ice king right there?
- And why didn't the Nights King just throw another spear? There were what, 5 walkers? Why not have everyone of them throw one? I know that it is fantasy and entertainment, But Martins book based seasons made so much more sense, all the way down to the details. 
- If the army can't swim, how did they even get the chains around the dragon in the first place?
- How did uncle Benjin know where to find Jon? 
- And why did he not get on the horse with Jon? There was room for Benjen on the horse. It's titanic all over again!
- Dany couldn't just do a fly-over from the very beginning to show her the evidence? 
- Why did Jon offer to bend a knee after she already agreed to fight with him? 
- How did 7 dudes fend off that many wights when we all remember what happened at Hardhome? - How did Jon's muscles not paralyze when he fell into the water? 
- Why is Bran not being used to see what is coming up and guide characters a bit?
- Why did Jon never write to Winterfell? Ravens can teleport these days, it would have been as fast as twittering. 
- Why have Gendry send a raven and not instead have Daenarys worried about Jon and Jorah and deciding to go find them herself? 
- Why did Bran take no part in a mission beyond the wall? 
- How did only one person die after all of that? 
- Also: why didn't they bring any horses? Or at least 1 to get away with the wight quickly?
-Why, in the middle of winter in the North beyond the Wall, was that lake not frozen 10 feet deep already? Even Arctic sea-ice in summer is usually much more stable than what we saw.
-Can't Bran warg into a raven and tell them where to find a small group of wights as they ran into just by accident? 
- Apparently no one ever drowns in Westeros-- not Jaime, not Bronn, not Jon-- despite wearing heavy armor and being one-handed, or being dressed in heavy furs.

It feels that the writers just haven't put much thought into it, and don't care anymore frankly.
But the worst bit was the clear setting up of the final boss battle. Take out the King & you win. How devastating given ASOIAF's message. No way the books end with everyone being saved by the right guys winning a war (or so I hope). The writers of the show have a main problem, which is that they focus too much on the big picture and mess up all the details. The author of the books main 'problem' (I love this however) is that he makes all the details perfect, but leaves too much in and makes everything needlessly complicated with like twenty super interwoven threads. We've gone from a story that dared to behead Ned Stark, depict the Red Wedding, murder Jon Snow, and kill Hodor, to a show that's playing out like any other hackneyed, formulaic Hollywood blockbuster. Game of Thrones has completely lost its identity and everything that set it apart from other shows with it. It's fan service after fan service now. 

This season sacrifices a lot of logic to the endgame plot; it is very clear that everyone is driven by D&D's plot. The Nights King needed that dragon, so they made up the lamest shit to bring the group beyond the wall with 3 dragons. Even the dialogues are now driven by the plot behind it. I am fine with more speed and pace, but it is just too obvious and convenient sometimes, and with the characters and dialogues being so shitty now, I am no longer as surprised or emotionally invested in whatever happens. We all can see that the reason why the Night King didn't freeze the lake and simply march forward, is due to the plot, where Dany needed to rescue them, not because 'the ice is going to break'. Tormund should have died, not once but twice. It annoys that none of the Suicide Squad died except a minor character nobody cares about. Tormund surviving that attack from all these monsters? The ones everyone fears and are only stoppable with fire and dragonglass? Tormund has half a dozen on top of the, and makes it out with not even half a scratch. Bulshit, GoT was never like that. Not to mention Gendry running all that way back to the wall (which took them days to walk away from, and Gendry doesn't even take a break). The guy most of them met only a week ago and who has never seen snow before.

But despite all this autistic nitpicking and grumping, I still will watch the last season, and am curious how it will end.

I'm a bit surprised on how the Walking Dead managed to stay afloat for so long. The comics are quite normal and they don't stray from what's been made in the zombie section. Yet it's still going. I think it never reached that level of fabulousness that GoT reached in its best episodes. It was good, but never epic, so even when some seasons had slower parts and lesser episodes, the fall from grace wasn't too steep and deep. They could get away with it. GoT not, or at least not in the eyes of a couple of nerds and autistics haha. I really like the Walking Dead though. Just like I loved Lost (minus the last season); nice escapism tv. Sure, it has zombies and illogical moments at time, but it's a nice series. I think it's not the fantasy element in Game of Thrones that gets me going. It is about continuity and setting up your own boundaries of reality and then bloody sticking to it. 

I probably need more important things in life to focus on hahaha.

September 1st 2017

Skin burns terribly and flushes all the time too. It feels much worse than it looks, although it's pretty red I think. My normal good camera is out of use for another week and until then I used a shitty cellphone camera, not great in colour depth.

These pictures don't show well what the flares are like, because they aren't very sharp nor super in colour, but if you double the redness, it comes close to reality.. I'm just cooling with fans and airco for weeks now. I mean, I always do (airco only in summer) but normally I have maybe one flare a day and otherwise can keep skin calm this way. Now with this big flare I cannot and am hot faced and with nerve pain and very red flushing even with fans/airco. Or sometimes it goes down for a few hours, but of course as soon as I have to go somewhere and cannot keep the turbine arctic wind going, the rebound flare is bad too. I always liked keeping temperature differences minimal and keeping the fan at as much of a distance as possible yet still effective. But my rosacea just laughs at that strategy now.

I started montelukast when I had already a bad skin period and was just fighting flushing all the time (it's normally not this bad), so it is very hard to see what is doing what now.. Normally i'll always start a new medication during a good spell, so it is easy to track its effect, but not this time.. so i'm none the wiser now. I think it requires 2 month trying at least. Someone wrote me that methotraxate helps bring rosacea down. Which I find very interesting. I have asked for methotrexate a few times already in the past, it looks so promising for lowering auto-immune related inflammation, and my dr. mentioned in the past how it helps some of his worst rosacea patients. I've got underlying auto immune illnesses too, but dr. didn't want to prescribe it so far for me (yet, I hope), as the side effects are too serious, potentially. I think he meant increased infection risks. It's not like this med isn't prescribed for other auto immune patents, it can't be thát bad therefore surely. Maybe if another health condition requires using it in the future, my rosacea can lift along with it..

At the moment I'm told doubling my dose of propranolol, and take clonidine every 7 instead of every 8 hours for now, as flaring so bad. (This morning I overslept and missed the 8 hour clonidine window by 2 hours and have a lovely deep rebound flare to deal with first thing in the morning, just wonderful). I think that perhaps hormonal changes are firing mine up, am getting it all checked out next weeks and also an MRI for endometriosis, so I hope that test isn't going to make me flare even more. At least it's not X-rays. Doctor at the ultrasound scannings said I've got big cysts with blood and also signs of premature menopause starting, so hopefully some blood tests with confirm that (or hopefully refute that!) in the next month. Menopause sounds like a bloody minefield for rosacea, from the female friends with rosacea that I know who are going through that.

Feeling just low and tired ad demotivated in general. Someone wrote on the Rosacea Forum a few weeks ago:

"You've said: "I don’t know if I can live like this any longer even though I know this shouldn’t been that important…" It is important. I don't know why most folks treat skin issues as lesser medical situations. They're not. Skin health is an indicator of overall body/mind health. Skin health is tied into gut health, as well as other aspects. The skin is an organ, and that organ is inflamed. That is a serious issue. This is a serious health issue, and you are correct to feel the way you do. It is painful, itchy, upsetting, and crippling to your daily life. You health situation should be treated urgently and kindly, as you are suffering. Please, do not add more suffering to your situation, mentally/emotionally, by thinking that you are just being vain or shallow. You aren't. You are genuinely hurting, and I hope and pray with all that is within me that you find healing and total relief soon."

"In severe cases, it can make life completely unbearable. I agree with the op's sentiment, that I often think death would be a relief from this misery. Other than being in constant physical pain with the unsightly disfigurement that comes with this disease, my life is wonderful. Like the op stated, now I just can't enjoy any of it."

Helps to know that some others are struggling all the same. 

I think I'm having a monster flare or something.. I've had them before in the past. Nothing works, not fan not airco, not cold pack; just a constant hot burning face. In the past there often was something to pinpoint it to; hormones, extreme cold or hot weather, having eaten comfort foods for a while, stress. But sometimes there also was no clear reason for it and it was just a flare.. I hope this is just a flare too. Nothing underlying firing it up. I'm petrified of changing hormone levels. Will have mine tested soon, so fingers crossed all is stable still in that department. These are pictures of a similar sort of flare back in 2010; this was a cold January winter flare, exacerbated by seb derm. Miserable too. I am literally so sick and tired of all this. Getting tempted to try laser out once more. Anything to stop this life ruining painful red face syndrome. Looking like a goddamn clown. 

Wished my skin was back to this!!! 

I do not know why but these flares sometimes just happen out of nowhere. Boooh, thumbs down for my life currently. 

August 31st 2017

Oh what a shitty summer this has been. My face has been so flush-prone and the weather so warm that I've been a real Rapsunzel, locked up in the tower. An ice fortress in my case. Long walks in the great wide beyond were mostly out of the question too as it was simply too warm. Luckily there were my treadmill and audio books instead. Latest book was Kafka on the Shore, from Haruki Murakami. Oh I have so much to write about it, but unless someone has read it, the appeals of talking cats and the Concept of Colonel Sanders will not ring true. 

I also managed to speak to my dermatologist (Dr. Anthony Chu). My skin is not good, very easily flushed, red and it pretty much burns all the time, even when not very red looking. I asked him if he knew of some new things perhaps for subtype 1 rosacea, the red dragon beast of skin conditions. He has me up my beta blocker (double the dose, from 40 mg twice daily as I did for years, to 80 mg 3 times a day; he said I could as well have taken sugar pills as the initial dose is so low, in relation to my flushing problem). Also prescribed me an asthma/allergy med called Singulair (Montelukast). I was given it last year already by GP for my bronchitis, but never took it very long. Doctor says it helps some of his rosacea patients, especially flushers, as it lowers inflammation and interferes with mast cell issues, which play a role in allergies and flushing. I am glad to try it out and have already taken it for a week, but too soon to tell if it improves matters. Some days I think it does, others I am not so sure. Hopefully better effects in weeks to come. 

Here is some info on the link of mast cells and rosacea:
"A team led by Dr. Anna DiNardo, associate professor of medicine of the University of California-San Diego, found that mast cells play a direct role in the activation of certain types of cathelicidins, an enzyme involved in the innate immune response that is over-produced in people with rosacea. Studying the process in mice, Dr. DiNardo's team determined that when exposed to a neuropeptide called PACAP, mast cells produce enzymes that trigger the production of cathelicidins. In mice bred to lack mast cells, this chain reaction did not occur."

He also told about a cream that really seems promising for rosacea skin. Some patients reported very good success with a mix of 0,5% ketamine with 1% amitriptyline in a cream base.. You use it topically and it apparently pales the skin. It also helps (more officially) with erythromelalgia, a health condition that also involves a deep red flushing and burned red skin of the legs, arms, chest etc. The cream has to be made by a compounding pharmacist. My doctor is looking for one right now, willing to make it, as it's not a commercial cream yet.

Here is some more information on this cream:

I also asked again about lasers for rosacea. They can help, but doctor also said that laser damage is unfortunately also quite common. Confirming again my Russian Roulette feeling about them. Hit or miss, and I am extremely envious of anyone who hit the rosacea jackpot with lasers or IPL. I just can't stop thinking about how much better my rosacea was before that fateful IPL in 2005. Maybe I should have kept going and going, with other practitioners and machines. I just didn't want to make matters even worse than they were, though. Never sure what is wisdom in these things, as none of us are clairvoyants. 

Another topic I have already covered, is botox for rosacea. But I was sent this little article about the successful treatment of rosacea redness and flushing (and even skin outbreaks) with botox. They inject it superficially in the skin, to stop the skin signalling for blood vessels to dilate. It is a temporary effect and not everyone with rosacea has the same good success with botox (and it is expensive on top), but it is a treatment option :)  A friend with the same doctor and rosacea type as mine had botox treatments for some years for rosacea, but found the procedure itself painful, then flushed for days on end, before things settled and actually improved. Until the next dose was required. In theory the injections should not reach your facial muscles, and only be applied very superficially (for the blood vessels high up in the skin), but one friend who had the treatments, once did have trouble smiling for a while.. Not as bad as this, but you don't want to end up looking like a stroke victim (thanks Melissa for finding this image). I know of some people who had good success with it and really had their bad flushing calmed down. But for others it gave first flushing for days and then not really impressive results.. It is one of those things you unfortunately need to try to know how you react. I would love to try it myself but am a bit afraid tbh because if my skin reacts badly to botulinum toxin, then it will stay in my face for months and months on end....

I had an ultrasound today, after a year of stomach pains, and things are not looking too great. Dr. was fairly sure I was pregnant! I said no way, not possible.. Well, she wanted me to take a pregnancy test nevertheless. That was not the worst news btw (she was wrong on that one anyway), because I also have about 3 huge masses in my uterus, cysts with blood by the look of it, but massive. Look like endometriosis. Two aunts have it, one bad enough that she never had kids and also had the whole birdcage as she calls it removed at my age, so late 30's. Just grand..  I don't hope that's my destiny as well. 

I now need an MRI scan soon. I'm a bit worried.. They treat endo with the pill/hormones (mainly progesterone, to stop estrogens from forming) and hormone pills have proven in the past to cause a guaranteed inferno face for me. But with that condition, uterine lining grows like wildfire, on places where it should not be, like other organs. It bleeds at clockwork too and that blood is like glue for more organ damage. Adhesion in bladder and bowels and all sorts of messy things could come from it. Ugly... Not to speak of the inflammation element. If my inflammatory bowel condition already spikes up my rosacea flares, what must a whole intestine of inflammation then do to my inflamed face (I believe inflammation in one part of the body can flare up skin inflammation too, over time).

Hormones prevent endo from bleeding and growing. Other than that there is also surgery apparently, to remove the extra tissue in your abdominal cavity and such. Not my thing either, surgeries. Anyway, hopefully its not too bad. The doctor had also the uplifting message that I seem to be close to menopause, or heading towards an early start of it at least. Of course, full blown menopause could then still be another 8 or 10 years from now ( I hope), but gynecologists already warned me about this 8 years ago, when I have been turned inside out due to recurrent pregnancy loss. So that one got me flustered and even more red than I already was, because I actually HAVE been so flushy during this summer, and much more red and struggling with my rosacea than some previous summers... I even thought I was having hot flashes lately, with all body heat/sweating now and then (even when being behind a fan). I Sure hope its not menopause starting. 

I hear you thinking; And is there also some good news perhaps??? Well there is :) I have a little
kitten. Long story short; it was sleeping and staying days on end in the bistro slash wine shop where I help a couple of evenings a week with glass polishing and drink pouring and such. Poor little thing looked about 3 months, very pretty with long fur on chest and paws. In fact, he looked like a small Maine Coon cat. Very affectionate too. But mostly he solemnly hid behind boxes and looked for some safety, I felt. I heard from people around that the owners left for weeks and just left a single window open for the kitten. Nobody knew when they'd return. It was curled up and hiding out of sight and well, I just can't stand the sight or thought of animals being sad or suffering, so decided to have it stay over at our place for a little while, until the owners came back. It  looked healthy and all, not disease ridden, so when it was there again the next day I thought; enough, he can sleep a few nights in one of my spare rooms.

I expected my cat Tsar Piotr to go ballistic, or otherwise his brother (hunter and alpha male top cat), but they were both chill as could be. But the omega of the group, a ginger cat who is incredibly soft natured normally, wanted to more or less slaughter this kitten. Yodeling, growling, hitting, chasing it in a corner, even bullying it inside the cat litter box and refusing to let it out for hours. My beloved Ginger is smart too, because when I crouch nearby, he lays flat on the floor, imposing in front of the kitten, but licking his paws all leisurely, pretending to ignore the small cat. But once I go back to work, I hear blood curling cries from the hallway... So that took me quite a bit of energy this week. They are improving... tolerating the other at a certain distance. Its owners have come back eventually and I spoke them and they said they would pick the kitten up 4 days later, over the weekend. I didn't quite understand why they didn't go pick their pet up right away instead. By the time it was weekend, I spoke him again while at the workplace, and he asked if I didn't want to keep it. I said that wasn't the plan really. Instead of picking kitty up, they went away again, yet to be returning, and the cat (named Bor the Woolf by now by the other cats) made himself very much at home... 


July 25th 2017

I so hate travelling in the morning rush hour! And somehow found out that the reason why (not the obvious hoarding of passengers due to high demand) is shared by others. This article on the 13 worst underground transportation offenses ranks my complaint on numero uno!

"1. The woman who douses herself in perfume right before getting off
We get it, you have a hot date tonight, but can you please just wait until you step out of the train? I am festering in a flowery gas bomb and I haven’t had access to oxygen in about two minutes"

I got in the train early and had seats to pick left right and center. It was not busy. I chose one and within ten minutes, a young woman steps in the nearly empty train and goes sit right behind me. Literally oozing perfume from every pore and in a great aura cloud. Guaranteed flush for me, and my skin was burning already anyway, so I packed up all my stuff and quietly moved to another carriage. Not much use however, because as more passengers stepped in, every place available reeked of fresh perfume.  

Within this category of non-lethal annoyances it is also worth mentioning that I had food poisoning a few days ago, and a bad headache ever since. Maybe food poisoning is too strong a term, but some fish dish in a restaurant got me properly sick. A friend asked me "How can you get food poisoning?My list of foods is so short I can write it in my palm." It reminded him to not deviate from his food list haha. I guess those are the risks when stepping away from the safe rosacea foods.. I mainly eat organic meat these days, a variety of vegetables, lettuce, goats cheeses, all sorts of fruits and rice flour pasta's and porridge. Oh and fish now and then, but mainly fully baked salmon and tuna. 

The headaches are bad when I get them; usually they are linked to me typing too much and too long on a computer, while having bad (slumped) posture. Wearing high heels gives a guaranteed headache in the evening too. I used to visit a physiotherapist for it previous years, who would massage the sore points in neck, shoulders and lower back. Some disks in my spine are not perfectly straight in line he used to say, and high heels would put extra tension on them "so flat shoes for you young lady!". Of course.. I lost my normal looking skin colour already, I lost the ability to put make-up (or perfume) on, I can't drink alcohol or sit in the sun without looking like a heart attack victim, eyelashes and half my eyebrows have disappeared over time, my rosacea medication made me gain weight and I lost my waif-like figure and now high heels are off the menu too. Bring it on.. Curious what will be next. A bulbous swollen nose perhaps, or ocular rosacea that makes my eyes close up with red eye rims perhaps?

But, honestly, you only realize how bad a headache can be when you have one. And then when it is gone I think: face flushing is the worst thing on the planet!! Until I have a bad headache again; then I think I rather have a face flush, because at least then I can cool it down. Isn't that true of anything though? Pain pain pain.. More days where I feel sick than good days. I'm sick of pain. It's fine to pretend it's all nothing really, to the outside world, but to wake up in pain, or have a day of pain to look forward to, week in week out; I'll admit that I am not in the greatest of moods half the time. 

Pretty much everyone with rosacea I know deeply suffers under it however, including bouts of depression and anxiety. Rosacea probably seems like a cosmetic issue for most people who do not have it, but it's a terrible condition really. It's on your face. It burns. It flares from a hundred things from everyday life, unlike most other skin conditions (eczema is fairly stable; it also comes and goes but has a delayed reaction, whereas with rosacea, you drink a glass of alcohol and you look like a Christmas tree set alight within half an hour). It's a right nightmare. I am simply exhausted under the constant burn and low level pain, to be honest. And when you are in a low mood, the pain threshold lowers too probably; it becomes more difficult to bear. Our buckets are already nearly fill, and when something occurs ON TOP of that, the water tips over and you have a flooding problem. I literally cannot handle much going wrong these days. I really cannot handle a whole lot more than I am dealing with now, on most days. So small things that happen, i can blow them right out of proportion. My stress resistance level is very very low. That results in unreasonable outbursts now and then to loved ones or even my darling cats. 

I read in the past how chronic disease can make you clinically depressed, as does inflammation. Some researchers even write that depression has to do with inflammation in the body. I'm not so sure if that is always the case, but it seems clear as day that having auto immune or chronic inflammatory diseases, does not particularly make for happy brains. And when you are in physical pain, this makes you experience more pain even worse than it technically has to feel. And highs, like boosts of energy and happiness from achievements.. they only last a short while for me. Then the basic state of feeling shit and not in good health takes over again. Despite having all sorts of good things in my life, I feel like a prisoner. I'm literally always in a meh mood. Always feeling not very great, bit empty, bit melancholic, and then the day just started!

When there are all these restrictions, it takes away your sense of freedom and control. After 18 years of this bulshit, it feels by now that this is just my fate. I do not participate like the rest. I control my life and environment, and sometimes step out of it to participate with some friends or people I feel comfortable with. The rest is a jungle. If someone invites me to dance, and I accept, within 2 minutes I am bright red. Made so vulnerable to such cheap weapons. Even though I couldn't care less about the guy. Luckily I have friends in the same boat, and there are rosacea forums and facebook groups, where people all just the same flock to. It feels less alone when you connect with a couple of people who are the same. I'm probably happiest when I'm completely buried in work and fully distracted. In a zone. Nevertheless, there seems to be no real sense of unbound future anymore. I remember when there was a sense of anticipation, and desire to develop plans and experiences. You get that early in life, nothing is set in stone yet, no paths are cut out, you can literally decide to go to Paris that same day, why not? Now we are stuck in paths, and stuck in the rut with our health. A lot of possibilities and paths are closed off. That sucks. And this is technically the same for everyone at a certain age; you cannot go back in time and make different decisions and carve out a different life. You have to do with what you chose at the time. But people of age can still create a future as they wish. When you are chronically ill, the paths still open are fairly limited. It's all circles now, there is no vertical path any longer. You can almost just see where everything will end. And when you believe this is the only life you will ever lead, that is a miserable concept. 

It reminds me of a passage in a book I'm reading, Kafka on the Shore: Sometimes fate is like a small sandstorm that keeps changing directions. You change direction but the sandstorm chases you. You turn again, but the storm adjusts. Over and over you play this out, like some ominous dance with death just before dawn. Why? Because this storm isn't something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn't get in, and walk through it, step by step. There's no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That's the kind of sandstorm you need to imagine.

An you really will have to make it through that violent, metaphysical, symbolic storm. No matter how metaphysical or symbolic it might be, make no mistake about it: it will cut through flesh like a thousand razor blades. People will bleed there, and you will bleed too. Hot, red blood. You'll catch that blood in your hands, your own blood and the blood of others. And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about.”

Ok, something more cheery then. A Forum member called laser_cat is having some success with botox treatments for her rosacea. I posted a long time ago about botox for rosacea, but here is a recent success story to add; I felt like sharing this, so others might know that there is another possibility to treat rosacea flushing, redness and burning. 

laser_cat wrote on The Rosacea Forum on July 24th 2017: "Hi Nat! Yes, my botox is being done specifically for rosacea. Not totally sure if there is technique specific for rosacea or not but I think perhaps there is. I've had 5 treatments so far I believe. I didn't see any results until maybe 4 weeks after the 5th treatment. The last 2 injections, my derm consulted with a derm in NYC who has had success using botox for rosacea. Treatments are $$ but I am very fortunate that insurance covers mine. Without insurance they would be ~1000$ / tx I believe. My last 2 injection rounds were 100-110 units each, a lot of little injections covering full face and ears. The NYC doctor told me that patients should generally see ~60% improvement 3-5 weeks after injections, but sometimes a few treatments are needed to get the ball rolling. The NYC doctor also said most people don't know that very high doses work best and are afraid of them. One injection round should last 3 months, so they say.

My post here 

I had been diagnosed as "severe, uncontrolled neurogenic rosacea" and believe botox has made a decent dent into it. The biggest improvement being I can lie down at night. Hoping I will see more results over time. Best, L."

These real (!) music album covers from the old days made me smile too (no offense to religion or God, just great album covers):

There are a couple of rascals in my street, you can see from their little snouts that they are mischievous. So the other day I walked past their house, and they had this collection of rocks put on a table. With PRICE TAGS attached to them. So I had a look, one rock with the slightest of glimmer was prized 15 euro, another 10. They said it were diamonds. I knew as they had put hand written (virtually unreadable) notes in everyone's post box the day before, announcing their diamond sale the next day :) I thought that was funny and inventive. The smallest rock was given away for free, awwww. But the rest of those prices! I gave them five euro without much of a second thought, but ten or fifteen? Now I’m curious as to how many diamonds they have managed to sell eventually. Then again, I perhaps should have shelled out the fifteen simply because I admired their advertising campaign. I could have also done the Moss test on one of the rocks of course. 'Hi kids... mind if I hammer your quartz... uhm I mean diamond to oblivion? I mean, mind if I see if there's a diamond in there? WHAM!" Most likely not hard as a diamond, but that would have been one piece less of merchandise, I'm not that mean of course.

Back in the days we were eager for some pocket money too. I remember we would target the old peoples homes in the village and knock on every door, offering our services. Most oldies had no clue what work to give us, so we helped them along and suggested we could hoover, or wash a car, or swipe their doorway. The few gilders earned would then be taken straight to the community slash sports barrack, where they sold sweets in big boxes. The kind of sweets that remind me of the 80's now; fluorescent sour and sweet gummies, chalky sweet pink blocks of sugar foam, long sour and red sugary strings, radioactive green frogs from jelly candy. Sweet candy bananas and strawberries. The inevitable licorice. I preferred chocolate over candies though. Bounty bars or Snickers..
I have no clue about other cultures and kid traditions, other than Holland and perhaps America (from imported movies and tv series). When I think of America I think of lemonade stands in the street (those suburban ones with Mommmms of the Year mothers who do everything right), where families perhaps also sell old things, but where they in any case sell their home made lemonade. Suburbia basking in the sun, hysterically upbeat mothers, hyperactive kids fighting over lemonade tapping and super sweet drinks with too much sugar. You set up your stall, you made a sign, and hoped people stopped by. Using plastic cups because they were cheap. Providing a pretext for people to give you small amounts of coins rather than an actual child-sized business. 

I have also watched a couple Bollywood movies the past couple of weeks. They were full of the typical Bollywood dancing, colorful outfits and singing in high pitched melodies. The inner message was about the success culture in India. Apparently India is going the way of other third world countries and trying to be just like the U.S from the 80's. Importance put on status, how much money you make, what you own. If I can go by these movies, then the parent's of kids over there are putting enormous pressure on them to have good grades, get into the right schools, have a high status job and all that comes with it. Apparently kids over there are under so much pressure that if they don't get the best grades, they are more inclined to go as far as to commit suicide. They are choosing to kill themselves rather than disappointing their parents. The message of the movie was that happiness isn't about what we have, but what we do and who we are. There are some funny youtube videos where they have put English subtitles under some of the Bollywood songs, where they write out phonetically what the Indian actors appear to sing. Bit goofy (childish) perhaps, but that never fails to make me smile. Benny Lava is one of my favourites: 

And they have a Michael Jackson impersonator too :)

In the mean time, a much more friendly and enlightened person than me is trying to teach me about generosity.

He wrote:
"I will tell you about a book I just finished reading, a collection of tales of the samurai warriors of Japan. The samurai were very fascinating. They lived by a code of perfection..always trying to master their swordsmanship, archery, poetry, mind. They valued discipline, constantly practiced mindfulness, and were very scholarly. They honored those they served, even above their own lives. They would rather commit seppuku (ritual suicide) before bestowing dishonor on the themselves, their lord (ruler), or their family (maintaining the honor of their family line was very important). Tesshu was one of the most famous of the samurai, and his tale was told towards the end of the book. I was particularly moved by the following story of his compassion in his daily life and wanted to share it with you.

Yamaoka Tesshu was appointed imperial chamberlain and became on of the emperor’s closest advisers. He remained in the emperor’s service for another ten years. Then he retired from the imperial administration to devote the short time he still had left to live the art of the sword, to Zen, to calligraphy and to charity. Yamaoka always wore the same threadbare clothes. One day the emperor said to him, “It is not fitting for one of the members of my retinue to be so ill attired. Take this money and go by yourself some new clothes.”

Three days later, the chamberlain was still wearing the same worn-out clothes.
“What did you do with my money?” The ruler asked him.
“I used it to clothe some of Your Majesty’s poor children.”

The emperor sighed and smiled. He concluded that his chamberlain was completely incorrigible. His reputation was that of a bodhisattva who never kept anything for himself. Not only did he distribute his salary to the needy people who knocked on his door, by he also executed calligraphies that he sold to give money to charitable causes and for the reconstruction of temples. It is said that he executed a million such calligraphies, and it may be supposed that he spent part of his nights doing them, because he produce them while continuing with this official duties as well as his practice of swordsmanship and Zen!

We must take care of others and not be concerned with our own welfare. Doing away with our egoistic desires, courageously facing all adversity, and keeping a pure heart - that is bushido.
Yamaoka Tesshu"

I also read an article from 2004, where an author in the New York Times states that "Sometimes Rosy Cheeks Are Just Rosy Cheeks" 

Jane E. Brody wrote: 
"In recent months, three women I know said their doctors had told them they had rosacea, a facial disorder that mainly afflicts fair-skinned adults. Rosacea is commonly characterized by frequent and intense flushing or blotchy redness, the appearance of broken blood vessels on the cheeks and nose and, in some cases, acne-like pimples or pustules. Yet the faces of these women do not seem abnormal. True, they have ruddy cheeks, but so do I. And true, they tend to flush when drinking wine or exercising vigorously, but again, so do I.

I don't have rosacea. I simply have rosy cheeks. I've had them all my life, and I, like a male friend of mine, often get flushed in hot rooms or when I drink alcohol or eat spicy foods, all of them with potential to aggravate the symptoms of rosacea. In a report in the journal Women's Health in Primary Care titled ''Is It Rosacea, or Just Rosy Cheeks?'' Dr. Herbert P. Goodheart, a dermatologist in private practice in New York, suggests that rosacea may be over diagnosed, possibly resulting in unnecessary or inappropriate treatment. In any given month, Dr. Goodheart says he sees about 10 new patients to confirm diagnoses of rosacea or to treat it. ''Some of these patients,'' he said, ''have typical findings of rosacea -- central facial inflammatory acnelike lesions, often accompanied by a history of blushing or flushing as well as persistent facial redness and 'broken' blood vessels.''

But he added, ''Others may prove to have other diagnoses, such as adult acne or acnelike conditions, and a subset, perhaps 20 percent of these patients, have what I consider to be simply rosy cheeks. Generally, such patients are fair-skinned, and many are of Celtic ancestry.'' The fact that the National Rosacea Society has designated this Rosacea Awareness Month is likely to send even more people to their doctors. The society estimates that 14 million Americans, including former President Bill Clinton, ''suffer from rosacea, most of whom don't know it.''
But instead of leaping to treatment (there is no known cure for rosacea, only therapies to reduce the symptoms), Dr. Goodheart suggests it is wiser for patients who do not have clear-cut, bothersome symptoms simply to observe them for a period of perhaps one to two years to see if rosacea actually does develop. In an interview, Dr. Goodheart said, ''I think people are seeing doctors unnecessarily and using creams and taking antibiotics unnecessarily to treat something they don't have.'' He added, ''If you went to Ireland or Australia or observed the faces of many fair-skinned sailors and farmers, you'd think there was an epidemic of rosacea because they all have rosy cheeks.''

New Criteria
The Rosacea Society sees a different problem: missed diagnoses or misdiagnosis of people who do have rosacea. As Dr. Jonathan Wilkin, who heads the society's medical advisory board, said, ''Some physicians may not be aware of or recognize rosacea and may treat patients with rosacea inappropriately as if they had adult acne.'' Such treatment, he said, can make the redness worse.
Dr. Wilkin, a dermatologist with the Food and Drug Administration, led a 17-member expert panel that recently issued new diagnostic guidelines that the society says may improve the accuracy of diagnosis. ''Many patients with undiagnosed rosacea that is sufficiently troublesome to warrant therapy may already be self-treating or have been prescribed products for acne, which may be irritating and ineffective,'' Dr. Wilkin said. ''An accurate diagnosis for them could mean avoiding inappropriate therapy.''

A committee member, Dr. Mark Dahl, a dermatologist at the Mayo Clinic in Scottsdale, Ariz., said, ''This is a syndrome with lots of different elements that is easy to diagnose when all the elements are present,'' but not as easy when only one or two of the characteristics appear. The main symptoms of rosacea, experts agree, affect the central face: flushing, persistent redness, bumps and pimples and visible blood vessels. Other possible signs and symptoms include eyes that are irritated, watery or bloodshot; burning or stinging sensations on the face; roughness of the central facial skin; raised red skin patches on the face; thickening of facial skin, especially on the nose (mostly in men); facial swelling; and sometimes symptoms like those of facial rosacea on the neck, chest, scalp or ears.

But the expert committee identified two main subtypes of rosacea: one characterized by flushing and persistent redness in the center of the face, perhaps accompanied by visible blood vessels and possibly facial swelling or stinging, and the second resembling acne, with pimples and pustules often accompanied by persistent redness but, unlike acne, without blocked pores. Two other subtypes were noted. One involves thickened skin, which gave one famous rosacea patient, W. C. Fields, his bulbous nose. The other involves eye irritation that can become so severe it damages the cornea and threatens sight.

Myths and Tips
Contrary to widespread belief, the red-faced form of rosacea, if untreated, does not necessarily progress to more severe forms. Although many people with rosacea experience intense flushing when consuming even small amounts of alcoholic beverages, particularly red wine, drinking alcohol does not cause rosacea, and people who exhibit symptoms of this disorder should not be assumed to be alcoholics. One man with a face red from rosacea who had witnessed an accident was rebuffed by police when he offered to provide an account.''Who would believe you?'' said an officer, assuming the man was drunk. Other substances and situations that can set off symptoms are exposure to sunlight; emotional stress; hot or cold weather or wind; intense exercise; hot baths; spicy foods; hot drinks (but not caffeine per se); hot rooms; high humidity; and various skin care products, cosmetics or medications, including beta blockers, niacin and topical steroids. Certain foods can also cause flare-ups. Keeping a diary correlating symptoms with recent exposures can help uncover the causes of flare-ups. It is critical for people with rosacea to stay out of the sun and to use a sunscreen with an S.P.F. of 15 or higher year-round. Those who enjoy outdoor exercise do best if they limit workouts to the early morning or evening hours and to shaded areas. It may also help to reduce exercise intensity and instead work out more often or for longer sessions. Water-based activities, which keep the body cool, are other good options. In cold weather, cover the cheeks and nose with a scarf or ski mask and use a moisturizer daily.

For people with facial redness, the use of a green-tinted cosmetic can neutralize the skin tone. Topical medications to reduce redness and oral antibiotics may be prescribed for more severe cases. Some dermatologists use laser therapy to ablate the tiny blood vessels in the face that are cosmetically disturbing. Ocular symptoms are commonly treated with warm compresses and daily lid cleansing to unplug lubricating glands; more severe cases may require oral antibiotics and medicated eye drops.
In a survey of more than 400 rosacea patients who were treated medically by physicians, 70 percent reported improvements in emotional well-being, 60 percent said their professional interactions had improved and 57 percent noted improvements in their social lives."

July 17th 2017

My skin has been fairly good the past weeks, despite having had an infection in my body and despite tropical temperatures. Airconditioning helped there however :) I did make sure to sunbathe every early afternoon for about 20 minutes a day, sometimes for half an hour. Legs and upper body are exposed (bikini on of course) and pretty much as much skin as possible, while having my face in the shade and with a hat on. Got a nice tan and never really get sunburn anywhere else but my rosacea face. I have been tested on my Vitamin D3 blood levels in the past, and always was very very low...  Back in 2011 my levels were 11,7 ng/ml, which is pretty far under the low normal level of 20, and ideally that number should actually be higher than 40. It depends a bit which website you read about normal values, or which doctor you ask about it. A few years later my levels were around 12 again. So now I had been sunbathing and sunbathing and was hopeful levels were in the normal range finally because hey! why else did I have that good tan?

The current levels are disappointing too however: 16,8 ng/ml. Still seriously deficient. It's not a life or death situation of course, it's just a vitamin level. But my immunologist wants me to have much better D values, as auto immune conditions (and normal immune function) do better with normal vitamin D levels he says. I was given supplements for years, but they make me so flushed that I put them aside pretty much from the get-go, and hoped I could instead up-dose things with gradual, natural vitamin D production by my own body through sunlight. It's mid July now, and I have sunbathed for months; I just can't seem to make enough vitamin D levels.. :( I saw this awesome invention; a cover for your face when sunbathing, and it has a cold pack in the pillow that comes with it, a small portable fan and is sun powered! It's called The Shader, click on the name for a sales info link.

My skin the past weeks:

Despite the warm weather I managed to go out at strategic times (avoid midday heat and sun). The other night I was with friends at an outdoors food place, and it was warm, but the first half hour my skin held up and didn't burn too much. Despite the culture of giving several kisses to acquaintances, so when you know multiple people at the venue, that is stressful, as the women tend to wear make-up and perfume, which all rubs off on my cheeks if I don't kiss very strategically; have hair loose at all times and covering both cheeks, and make sure to kiss as much with the side of my cheek that borders on the ear as possible. Awkward, but getting fresh eau de cologne on my face is pretty much a nightmare :( But we managed to avoid that and had ordered nice foods. Then slowly a huge inferno crept up. Worse than normal. I realized I had forgotten to bring my clonidine along, and that it had been 10 hours since my last dose. After 8 hours I get rebound flushing.. The trick is to divide your daily dose evenly over the day, to keep drug levels in the blood stable instead of spikey. But then I had to rush home, leaving everyone else there with the food, and rush back with the meds. By that time the flush was already really deeply red, but I brought a cold gelpack and once the clonidine kicked in things calmed down a bit in my cheeks.

I had my colitis playing up too lately, which means cramps and a swollen belly, and the lady at the cash in the supermarket congratulated me on my pregnancy   😡             I got a red face and said No, not pregnant. She got red as well and I said something about having a medical condition that makes me look pregnant some days. I do not know if she then went on because she felt stressed, or from pure curiosity (read; nosiness), but she asked if I didn't want any children then? I said I wasn't sure yet and that was more or less the end of it. Felt such a mug.

Overall, weather has been tolerable for me and allowed me to bike all through town most days and even go out shopping with some friends. But over in the south of Europe, it is an oven again. Portugal and Spain have been having insane temperatures. Southern Europe has quite a few problems too with the lack of territorial organization and the lack of money to solve those problems, leading to big fires. The problem with the many wild fires we have there every summer is not just dry heat and arsonists, but also that the forests are pretty much disorganized and abandoned. Governments can be lax when it comes to getting everything organized. A friend of mine has so many properties (of which he doesn't even know half the location, only where they're supposed to be on paper - forest areas etc) that if one day a Marxist Leninist revolution starts he'll be singled out and shot first thing in the morning for being a filthy fat cat landlord. Pow! Even though he hardly knows where half of it lies. You don't get that problem in Holland; there the country is so small and every square meter of land is so high in value, that everyone knows exactly what he owns, and where. But the south is different. Just a month or two ago, 64 people died like trapped rats in their cars surrounded by fire in Portugal. In the newspaper pictures it looks like they were hit by a napalm convoy or something out of a war movies. Some villages just got swept off the map and entire families died. Nobody sticks to the rules of keeping the houses clean of greens and trees and everything for at least 2 metres. Maybe it is a good idea for the owners to renaturalize their plots of land... Remove all non native plant species and replace them with the more naturally growing stuff there, like oaks, chestnut trees, walnut trees. As this picture shows, those trees do not burn as viciously as everything else.

The picture is showing the benefit of having native plants next to your home. Nature knows best. Oak trees and chestnut trees did the trick while the eucalyptus and pine went to hell. They are a lot prettier to the eye anyway. And they don't dry up the soil like the eucalyptus. These trees not only act as a natural barrier to fires, but they are also much more efficient in dealing with climate stresses and heat waves. Even their soil is greener... unlike the sand/brownish soil in pine forest/ eucalyptus forests.. If anything, if the whole forest would have had its natural trees still standing, people would have had perhaps some more precious time to get away from the fires.

Apparently though, there are SO many plots of land in the wild nature of Portugal where either the officials have no clue who they belong to, or the owners themselves have never fully got message where their land is located (yet they annually pay their taxes for it nonetheless). And if someone cannot locate his own ground, then he also cannot replant oaks and chestnut trees. Seriously, there should be a massive effort by the government to get their ducks in a row. Demand the records from each local government entity for properties. If they do not have the records, then give those responsible a chance to get it in order, or hire more efficient people. If no one claims the land, seize it and redistribute. If it is claimed without proper documentation, then be reasonable and do everything possible to sort it out. Sort out disputes as they arise, etc. In the end, every inch of that country should be accounted for in an easily searchable government database. This is the Dutch way of handling things, at least. One could even wonder if it might be a German way in fact. For all the unclaimed land: make it home to a diverse ecosystem of flora and fauna, then perhaps it is best used as a conservation preserve. And why not make part of it a scouting terrain? Nature spots where kids can learn to become accustomed to nature again, and how to stay the night out in the wild. Learn to respect animals and plants, hopefully instill some aversion to destroying the planet.

If you’d live in Alaska for one calendar year and intend to stay there indefinitely, you are given a Permanent Fund Dividend. Once oil was discovered and exploited, the state constitution was amended to allocate a certain percentage of oil revenue to a permanent fund to benefit future generations of Alaskans that would not be able to depend on oil to be a financial resource. Each year, they’re given a check. Some years, it is a few hundred dollars. Other years, it has risen to two or three thousand dollars. It is asset-based egalitarianism, and it has been proven to work. Imagine if a percentage of all revenues from natural resources were allocated to a permanent fund which pays dividends. Never having to worry about the rent. Never having to decide whether to purchase food or keep the lights on. Having time to dedicate to bettering yourself and the world around you without the distractions of struggling to merely survive. We should divide the income from the oils and gasses and other valuables in our ground among all the inhabitants. Why is the Moon nobodies property (despite some peoples claims at it) and has the universe been declared the property of us all and of none of us, yet the profits of natural resources are not of us all.

In 1902, Willis Carrier was a 25-year-old engineer at Buffalo Forge, a manufacturer of heaters and blowers. A company salesman asked Carrier if he could help a printer whose paper expanded and contracted as the temperature changed, causing colors to overlap. Carrier discovered he could regulate heat and humidity by circulating cold water through a heating coil. He called his invention the “Buffalo Air Washer and Humidifier,” after the city that ended up losing half its population to the Sun Belt.

I was linked this article on airconditioning in the USA, and it was very interesting. A quote:
"Here’s a little history. In 1924, when my grandmother was born in the small town of St. Petersburg, Fla., the state had 1 million people — and six electoral votes. It was the least populous Southern state, a marginally habitable peninsula of humid swamps, hard-packed beaches, alligators, rum smugglers and Seminoles. As a girl, my grandmother kept cool by swimming and propping open her windows. As an 84-year-old woman, she lives in the Panhandle and keeps cool with an air conditioner.

“When I was young, I never had air conditioning, so I don’t think I missed it,” she says. “I went to the beach a lot. I even went on Christmas Day. Now, I couldn’t live here without air conditioning. A lot of people tell me they wouldn’t live here without air conditioning.”

By “a lot of people,” she means 15 million. That’s how big the state has grown in my grandmother’s lifetime. Florida now wields 27 electoral votes. Do some math. A state with six electoral votes is far less likely to screw up a presidential election.

Do a little more math, and you’ll see that before air conditioning redistributed the country’s population, the Florida recount wouldn’t even have been necessary. In the 1940s — the last decade before the air conditioner became a must-have home appliance — Al Gore’s states contained a decisive 291 electoral votes. As Hofstra professor James Wiley pointed out back in 2004, air conditioning “induced a major population shift within the country that eventually led to the Electoral College defeats of the Democratic presidential candidates in 2000 and 2004.” In 2006, an AlterNet story tracked the migration as well.

Without air conditioning, Bush might not even have become a Texan. Right after World War II, his forward-looking father transplanted the Bush family from Connecticut to Texas, a move akin to the Corleones going to Vegas. (I’ll bet he bought a window unit for the house in Midland, too.) If Poppy anticipated that air conditioning would swell his adopted state’s population and move it into the Republican column, he was right. No state embraced A/C more avidly than Texas. As an official history of the invention put it, “a place like Houston could only be tolerable with air conditioning.”

In 1966, Texas became the first state in which half the homes were air-conditioned. That same year, George H.W. Bush was elected to Congress — from Houston. Coincidence? Or does air conditioning make people vote Republican? After all, the GOP’s rise in the South coincides with the region’s adoption of air conditioning."

Before the advent of air conditioning, the North was the most climatically desirable part of the country. In his 1915 book “Civilization and Climate,” Yale geographer Ellsworth Huntington — a man who believed in the invigorating power of cold air — determined that the weather in the mid-Atlantic and the lower Great Lakes was most conducive to hard work and good health.
“We are frequently told that the Riviera or southern California has an ideal climate,” Huntington wrote. But then he noted, “For most people the really essential thing in life is the ordinary work of every day … Hence they are the ones which people will eventually choose in the largest numbers.”
The area we now call the Rust Belt was once the industrial, financial and political capital of the United States. Between the Civil War and World War II, almost every president came from somewhere between Chicago and Boston. Then, the air conditioner made it possible to export the cool, refreshing breezes of the Northern climate, without the clouds and the snow. The race to the Sun Belt was on.

On The Rosacea Forum, a couple of members brainstormed about what could possibly be done in the near future to cure rosacea.

Mostly everyone who has rosacea will hit a wall sooner or later; there are limited treatment options, and truly new treatments are hardly developed. We have been waiting for Mirvaso for over a decade (work title 'Sansrosa' for a long time), and it was a bit of a disappointing product that caused a lot of rebound issues and even rosacea worsening for a group of users. Rhofade is out now and works more or less along the same lines, although it uses oxymetazoline hydrochloride instead of brimonidine: both are used to constrict blood vessels. The first mentioned of the nose mucus and the second mentioned of the eye. And both have the problem of rebound widening of the blood vessels once it works out. Rhofade seems to work less well (read; will not make you ghostly white first), but it also does not seem to have as bad a rebound effect as Mirvaso/brimonidine have. The verdict is still out there on Rhofade, and there have been positive reviews, but also quite a few negative ones on the forums, and mentioning of the exact same rebound problem..

Anyway, all this makes you wonder why and how there will finally be a real breakthrough. In this Rosacea Forum Post, forum member ephemerality wonders out loud if there will be a possible future cure / solution?
"I think the only (future) solution to "cure" our faces is by cloning the face with our healthy stem cells, to build / grow a redness/rosacea/whatever-free and normal face layer (our pre-illness faces), and do a face transplant. Of course, it will also require much more advanced scar elimination techniques / devices once the transplant is done. 
However, so far there has not been any funding / progress on this front at all at truly and ultimately "curing" us. Only if all of us sufferers can get together and each of us make a certain amount of donations and find a good reputable clinical research facility to work on this solely for us, not like those pure profit-driven immoral pharmaceuticals which only want to make money by delaying in making any real progress or solution and only giving us the useless ultra short-term symptom masking stuff and possible harm inflicting medicines like mirvaso.
[..] Our problems (rosacea, kprf, etc) will not kill us physically, there is zero incentive for health care industry to cure us once for all, but to keep dragging us on wile they can "milk" as much money as possible from us... We need to have a reputable clinical facility with medically trained professionals to figure out how to do the stem-cell face clone for transplant, and also build the much advanced post-operation scar elimination device. However, we need them to work for us, not for profit-driven healthcare companies; otherwise, this will never end up with satisfying result for us.
Any thoughts, everyone?"

RaymondS replied that he has done a procedure called recell just on 3 months ago. (they use a little bit of healthy skin from your arm or back for instance, to have it transformed in a special device into a spray. They then spray your own skin cells in the spray form on skin burns or wound, and new healthy skin will form. It is not designed for scars as they are much deeper tissue than cannot simply be 'spray painted' over. It also does not solve the underlying issue of rosacea). I do wonder if it could help us create a thicker epidermis by the way!  RaymondS wrote about recell:
"As for myself it was for thickening of skin (dermabrasion) and scars so I needed the recell to help populate my skin back after they sand away your face as you can tell any type of dermabrasion for someone with rosacea is risky and dangerous as your skin already inflamed or weakened. The recell helped heal faster and maybe with time might help repigmentate my skin better. It take a very long time for it to help skin discoloration I have been told. It's Extremely expensive! and there's plenty of downtime. You get the skin taken from behind your ear and they spray it on your face however the problem is they then need to needle or sand away the skin to get the cells into your skin. Even then it may take several times to get a good result as anything. It's new! It sounds great but it's still so long away from being amazing. I'm recovering from lingering redness but the texture is maybe 15-20 % better - to me it was well worth it but I had damage from lasers so I will have to try again in a year or so. I never posted my recell experience on here because it's more for some laser damage / thickened skin which derms couldn't figure out which one it was. if anything my skin is redder than before so it didn't help that aspect at all but give it time and it should heal."

EIegantsquatIobster replied that he once also started thinking about this transplanting idea and had asked his father, who is a doctor, why skin transplantation wasn't already a tried and tested treatment option. And he answered that transplanting skin wouldn't change the nervous system which actively participates in creating the disease. He thinks this is especially true for type 1 rosacea. Even if we successfully transplanted the skin on our face, you would still blush from emotions, spicy foods and alcohol, most likely. "I feel like for this type at least the solution hides in understanding how to stop the autonomic nervous hyperactivity. The skin itself is fine, but the nerves in it screw it up and make it do weird things."

Ephemerality chimed back in and acknowledged that there is indeed a nerve component at play, but that there is also this impaired vascular (blood vessel) system within our faces. A face transplant would have to be much more than just a skin transplant (epidermis and dermis) therefore. He was talking about a transplant of virtually everything within the face (skin, flesh, bloodvessels, nerves and so on), all except our bones. He said that this idea came to him after seeing things about people who went through extra face reshaping (all the way to the bone level) plastic surgeries. Apparently, he added, surgeons can separate flesh from bone in order to even change the bone structure, and then reattach the flesh and skin back to the bone..."

EIegantsquatIobster came back on and stated that the impaired vascularity in rosacea skin is impaired "Also what exactly do you mean with "flesh"? There is epidermis, dermis where small nerves and capillaries reside and then hypodermis (fat tissue). Beneath that I believe are muscles (but I just realized I'm actually not sure about that xD) and then should come bones. I don't know how well developed plastic surgery is these days so perhaps you're right and they can now remove all the layers down to bone. But you're not getting one thing - the small nerves in the skin (which, let's assume, we change to healthy ones) aren't the only problem. As I already said, it's the nervous system overall involved and it goes deep inside you. Brain and spine and such. This sympathetic nervous system can make you blush and flush from "within", for example when you're exercising or emotionally stressed. So even with all your new little nerves and capillaries that have been somehow successfully transplanted you can still go red because your spinal cord or brain told you to! And, I mean, you can't dig in there and change everything, that's just wildly unrealistic.
because of the nerves. Capillaries themselves, he believes are quite passive, they dilate and constrict because the nerves tell them to. So his guess is that the vascular system in itself is not really impaired, but instead the nerves are. P.S. All this is my speculative "science", no one take me too seriously."

Laser_cat told about her rosacea success with botox. She suggested that we can best try to stop the release of neurotransmitters from nerve cells that cause blood vessel dilation. With the help of botox. She linked to a scientific paper explaining why botox is a therapeutic option for rosacea. "Botox has helped me a lot (way more than gabapentin, antidepressants, benadryl, etc). This would only help with subtype 1 I believe. Interestingly, there is also evidence that botox may help with depression, by controlling facial expressions, and therefore negative emotions."

I love the brainstorming. I don't believe that rosacea doe sno harm to the skin, the blood vessels or anything else, and that all flares are strictly down to nerve impulses. Rosacea seems a complex multi factual disease, where many different things can be the matter. Some people have demodex mite infections on their faces, other actual bacterial infections. Some flare and flush because there is an auto immune response within the body that creates inflammation and attacks the own body (skin/blood vessels and such in our case). Some people with rosacea have sun damage and have poorly functioning blood vessels, that do not dilate and constrict the way they are supposed to do. Some people have underlying allergies or inflammatory diseases (in the digestive tract for instance), that reflect in the skin with inflammation. It will be very difficult I think to figure out exactly what causes rosacea and how to cure it, because rosacea seems an umbrella term for a lot of different hings, that on the outside all share the red face symptom.

I asked two reputable professors in dermatology the same question; can a skin transplant cure me from this awful burning and flushing? Skin on the arms or back is not red, has normal vascularity and never flares. They both said something along the same lines as your father; it will be a matter of time before the newly transplanted skin will start to develop rosacea too, most likely. Because the underlying issues (especially for subtype 1 indeed) are still there. Auto immune activity, inflammation in the body because of that, the main big arteries in the face that lead to the brain will still be there (facial skin is much more densely vascularized than -say- the skin of your back; we need more blood vessels for the face as the brain needs more blood than the back) and they are probably somehow faulty too in our cases. The central nervous system is still there and firing the wrong signals. It might bring us back to very mild rosacea in some time but it is not a given that we wouldn't end up with the same problem further down the line then... I think that the only real promise there is, is the complete genetic mapping of every disease out there. And getting these faulty genes removed and corrected. So that would mean auto immune diseases and auto immune reactions in the body (which can probably add to the skin inflammation and abnormal vessel reactivity) are eliminated. It would mean that our blood vessels would start to function normally again, and not be weak and fluttering and prone to angiogenesis. We'd not have an overactive nervous system, no histamine sensitivity, normal functioning nerves in the skin, no allergies that stir things up. A thick and healthy skin instead of a frail one with insufficient skin barrier. I don't see this happening in our lifetime to be frank. We might also lift along on future discoveries in neighboring health fields. For instance, when a break through takes place in the treatment of eczema or psoriasis, we might also benefit from that.

I was linked by the way to a very interesting article on rosacea, dating from 2013. It's titled "Rosacea, inflammation, and aging: The inefficiency of stress". 

It is written by biologist Ray Peat and it's a long and technically written article, but in summary, Ray Peat suggests in this article that rosacea might be essentially a problem of the way in which we process the energy we get from food in our metabolism. He links problems in the way in which small cells in our body convert food into energy for our cells, with rosacea. That our bodies need to be more efficient again in energy distribution, and not waste parts of its energy in the form of heat in our rosacea skin. The writer explains that rosacea is difficult to understand disease, with many possible triggers that can make it worse or better. Unfortunately the treatment of rosacea is still about controlling the symptoms, not about offering a cure.

Ray Peat writes that he is surprised about this. Because the thing that is at the heart of rosacea, is the way in which it creates abnormal amounts of blood vessels in the skin and can also cause excess fibrous connective tissue (think of the thickening of the nose or the skin on the cheeks). Yet practically all the medical professionals focus on until now, is how to suppress the symptoms and make rosacea skin visibly more pleasing. Whereas in other medical health conditions, where excess and badly functioning blood vessels also play a role, the medical world does focus on this problem itself, and on ways to regulate this blood vessel growth. Not in rosacea however... He laments that rosacea is still seen and treated as a cosmetic issue. Which I think is spot on, and very true.. How often dermatologists or general doctors misunderstand the severity of rosacea, underestimate the pain it gives us both physically and mentally, how depressed people can become from the ongoing cycle and the progressive nature of rosacea. It is a hugely undervalued condition to have.

*On a side note, a blogger with rosacea called Talontedlex wrote a good blog entry this week             about the emotional impact of rosacea. She writes: 

"We are constantly told that we should be positive, that it could always be worse. I know that     people are trying to be kind when they say this, but it does not help. It fact it has been found that there is little correlation between the severity of a skin condition and the emotional effect it has on people. Everyone is different. Someone might have quite severe rosacea but have absolutely rock solid self confidence, while someone might have very mild rosacea and really struggle for whatever reason – maybe they work in a customer facing role, maybe they live in a climate that means wearing make up is difficult. [..] the medical community needs to understand that just because a skin condition isn’t life threatening, it doesn’t mean it can’t kill you."

She refers to a study which showed that test panels judge the same people with either flawless       skin or with rosacea skin very differently. When asked to pick associative words, people with             rosacea were considered more unhealthy, stressed, and tired. The depicted women with rosacea           were thought to be less trustworthy, successful, reliable, less fun and less intelligent. I have                 often read research outcomes where beautiful people are considered all the positive things you           can imagine. And this outcome is no different there, especially if you conclude that having                 rosacea skin must make you look less beautiful, in the eyes of other people. Ouch...  These two           research articles underline just how much psychological impact having rosacea has on patients.                

Back to Ray Peat. He writes:
"When blood flow in skin affected by rosacea was measured, circulation was 3 or 4 times higher than normal (Sibenge & Gawkrodger, 1992), and oxygen tension may be increased. An inability to extract oxygen from the blood, or to use it to produce energy, will produce the same hyperemia that would be produced by a lack of oxygen. These measurements suggest that mitochondrial defects would be the best place to look for a general cause of rosacea."

When mitochondria are damaged, active cells produce increased amounts of lactic acid, even in the presence of adequate oxygen. Lactic acid produces vasodilation (the dilation of blood vessels, that is so often seen in rosacea). Lactic acid also promotes the development of fibrosis, and it has been called a "phlogogen,"; a substance capable of inducing an inflammatory response. When energy is used in the body, the excess of the energy can produce nitric oxide and lactic acid. They in return can lower the energy production of vascular cells, possibly enough to lower their ability to constrict (Geng, et al., 1992), causing vasodilation. He goes on to explain how consuming caffeine can actually help the blood vessels constrict.

"Simple nervous blushing or flushing is usually considered harmless, and when a person is overheated, the reddening of the skin has the function of facilitating heat loss, to restore a normal temperature. But even nerve-regulated flushing can involve a distinct interference with mitochondrial respiration, and can stimulate the overgrowth of blood vessels. 

He does not believe that the fact that women develop rosacea much more often than men can be linked to too much sun exposure. Instead he suggests and links this phenomenon to hormonal differences:
"The relatively high incidence of rosacea among women (some studies indicate that it may be 3 times as common in women as in men) isn't likely to be the result of greater sun exposure, so it's reasonable to look for hormonal causes. The antiestrogens, especially progesterone, begin declining in the 30s, so that the rising estrogen has more effect on the tissues during those years. These are the years in which the incidence of rosacea rises suddenly. Rosacea develops later on average in men, whose estrogen levels rise significantly at later ages.

He goes on to link higher estrogen levels to increased rosacea risk:
"Veins and capillaries are highly sensitive to estrogen, and women are more likely than men to have varicose veins, spider veins, leaky capillaries, and other vascular problems besides rosacea.  Estrogen can promote angioneogenesis by a variety of mechanisms, including nitric oxide (Johnson, et al., 2006). "Estrogens potentiate corticosteroid effects on the skin such as striae, telangiectasiae, and rosacea dermatitis" (Zaun, 1981). Early forms of oral contraceptives, high in estrogen, were found to increase acne rosacea more than three-fold (Prenen & Ledoux-Corbusier, 1971).  Estrogen stimulates collagen synthesis, and it has been associated with a variety of inflammatory and fibrotic conditions."

He write then when you have a simple blush, this is coming from the parasympathetic nervous system. And as a result, mitochondrial inhibition takes place; a blockage in the cellular organelles in our body that can convert food into energy that our body cells can use. He describes the case of a 37 year old man, "slightly alcoholic with a bright red nose and cheeks, an amateur fiction writer".  When he was given riboflavin (B2 vitamin) and daily injections of general B vitamins for a week, the colour of his nose and cheeks turned to normal. "But on the weekend, after not having the shots for two days, his nose and cheeks were again maraschino cherry red". This author links this patients rosacea skin to problems resulting from damaged mitochondria and suggests B vitamins for a treatment.
He states:

"It's clear that any particular problem is likely to have many causes and many factors that could contribute to a cure. Lactate, glutamate, ammonium, nitric oxide, quinolinate, estrogen, histamine, aminolevulinate, porphyrin, ultraviolet light, polyunsaturated fatty acids and endotoxin contribute to excitatory and excitotoxic processes (*the pathological process by which nerve cells are damaged or killed by excessive stimulation by neurotransmitters)vasodilation, angioneogenesis (formation of new blood vessels), and fibrosis. [..] Riboflavin, coenzyme Q10, vitamin K, niacinamide, thiamine, and selenium are the nutrients that most directly relate to mitochondrial energy production. 
Coffee is often avoided by people with rosacea, but it is a very good source of niacin and magnesium, and caffeine has some of the same cell-protective functions as niacinamide."

He says that people with rosacea are more likely than average to have suffered from styes in childhood, to have varicose veins and spider veins, and to suffer from migraines and depression.  He goes on to say that
hypothyroidism has been identified as a factor in all of those (and therefore being a risk factor for eveloping rosacea). Good thyroid function is necessary for resistance to bacterial infection, for regulation of blood sugar, neurotransmitters, and hormones related to mood, and for the formation of progesterone. Progesterone regulates smooth muscle tone, including the walls of veins, so that a deficiency allows veins to enlarge. It also may inhibit angioneogenesis.

The amino acid GABA (Gamma-Amino Butyric acid) works as a neurotransmitter in the central
nervous system. It can raise our body temperature by controlling the blood vessel dilation in the body. Progesterone also produces heat in the body, by protecting mitochondrial energy production. Flushing, both by directly causing heat loss in the skin and by reducing mitochondrial energy production, tends to lower body temperature. Maybe this explains why not just me but virtually all people with facial flushing that I know tend to wrap themselves in warm clothes or little blankets during a hot face flush, and get body chills..

At the end of his article, Ray Peat gives advise about topical treatment options for sun-damaged areas in rosacea skin. he mentions topical niacinamide, progesterone, vitamin K, and coenzyme Q10. Riboflavin (B2) can probably be useful when applied topically, "but because of its extreme sensitivity to light, it should usually be used only internally, unless the treated skin is covered to prevent exposure to light. Topically applied caffeine, even after sun exposure, can reduce local tissue damage (Koo, et al., 2007). Aspirin and saturated fats can also be protective when applied topically."

He acknowledges that oral antibiotics can help and work, but that they probably work because they
reduce endotoxin stress (the stress inside a bacteria to release a toxin) when their numbers are brought back in the body. "However, antibiotics can kill the intestinal bacteria that produce vitamin K, so it's important to include that in the diet when antibiotics are used." He advises to eat regularly carrots, because they have natural antibiotic qualities. He also advises the occasional supplementation with vitamin K, or eating liver or broccoli.

June 22nd 2017

It's been hot and my skin hasn't liked it. Luckily I have air-conditioning in the house :) Evenings are not too bad either. Glad to have plenty of things to do in the house too, and have no need to be out there in the sun and warmth. Oh and my sinus infection resolved on its own. I have been rinsing my nose with salt water and xylitol and all is as good as clear now, no antibiotics or penicillin used :) My skin is fairly clear again too. The ridiculous skin outbreaks from the pictures in my last update are luckily gone. Maybe a couple of small red dots here and there, but I can hide them under some zinc cream, which also dries them out and makes them go away really fast. It's called a zinc oil, but it is a really thickish white paste and I tend to put a small bit on the back of my hand, then put a round dot on my fingertip, tap it once on my arm or some skin on the hand, so that the thickest layer is gone, then tip the remaining zinc on my red pimple. This covers just the red dot usually, and I can fade it out a bit once it's dried up a bit.

*Pimple is not the correct term by the way. Rosacea spots rarely are like a pimple, which have a big pussy head typically.. With a rosacea bumps, they tend to be much smaller, much less deep, and although there can be some white on the top, this is usually minor. Often they are basically small red dots, whereas acne tends to be bigger, deeper with more clogged pores and big whiteheads. Even people with subtype 1 rosacea (general redness, flushing, even burning, but not many skin outbreaks) can get these p&p's as they are often called. I think that abbreviation stands for papula's and Pustula's. 

I saw some interesting clips on youtube. There is a Dutch man called Wim Hof, who is pretty well known here and called "The Iceman". He has figured out a way to influence his immune system through breathing methods, concentration and challenging his body to go to extremes. He developed a breathing method which - when combined with cold water exposure - is said to help build body defenses and even help with depression and (immune related) illness. 

He first caught the attention of scientists when he proved scientifically that he was able to use meditation to stay submerged in ice for 1 hour and 53 minutes without his core body temperature changing (through breathing techniques, concentration and endurance). Since then, he’s climbed Mount Everest in his shorts, completed a marathon in the Namib Desert with no water and proven under a laboratory setting that he’s able to influence his autonomic nervous system and immune system at will. He was injected with an endotoxin infection by doctors, which normally always makes the body go into fever to fight the infection. But in Wims case, he could controls his own immune response by making his own adrenaline levels go up. The test was later repeated on 12 test persons who used Wims technique and also succeeded in this.* 

Wim has proven that "You can modulate your adrenaline levels by will. Stress hormones are able to modulate your immune response. There are many diseases that are influenced by your immune system. And you can imagine that it would be of interest if you could modulate that immune response and suppress it, like Wim has proven he can do, and that it might be of benefit for patients with such auto immune diseases.

I will add an interesting short docu on him, and his technique:

"Almost everything Wim has done was previously thought to be impossible - but he’s not a freak of nature. To demonstrate that any human can learn his methods, Wim offered to teach Matt Shea and Daisy-May Hudson to climb a freezing cold mountain in their shorts without getting cold. But when Matt and Daisy signed up for the training, they had no idea that the so-called Iceman was planning to lead them on a psychedelic journey across Europe that circled the chasm between science, spirituality and mystery." 

His breathing method is quickly explained here:

Wim also says that the environment has become too comfort oriented, that our bodies have become weak and that's one reason people seem to get sick more than they did years ago. There aren't the natural stressors from the environment affecting us. He works with well known sportsmen, sometimes takes them to Siberia to swim in icy water after making holes in deep ice. He said it has to do with concentration, breathing exercises and training. We all want comfort, like Freud said, but really according to this guy, we need some discomfort. That it's through suffering that we can even find meaning and balance for our lives.

*In 2011, Wim Hof was injected with a bacterial endotoxin in an experiment that challenged our understanding of the nervous system. In normal humans, the injection should cause a strong immune response leading to fever, chills and headaches. But not for Wim. It appeared that he was somehow able to suppress his immune response by making his body secrete adrenaline, suggesting that his method can allow us to influence our immune response at will. Scientists thought that he might just be a freak of nature. So to further prove this theory, they performed the same experiment on 12 subjects Wim had trained in Poland, and the same thing happened. If we learn to influence our immune system at will, he thinks that we could potentially use that to treat inflammatory disorders where the immune system is overactive, including Crohn's disease and Rheumatoid Arthritis. Of course, Rosacea would also fit into that category then.

The good thing about Wim Hof is that he has science and doctors involved, measuring his outcomes and verifying that he isn't just subjectively 'feeling' things. I seriously doubt that these techniques will help beating cancer. The cancer patient who features in the documentary I linked to, René Gude, was a well known Dutch philosophy teacher who developed terminal cancer, and despite his high hopes upon starting to work with Wim Hof, he still died from the illness soon after. I even doubt he can cure auto immune diseases to be honest, but he has proven that he can control his immune response in the case of an administered infectious diseases. And pushing your body to its limits, or better; stretching your bodies limits, I quite like that concept as well. I am super restricted in my lifestyle often, but feel so much better when I can work out and exercise and just be active. I do think we can challenge our bodies more to improve health in general, and perhaps even regulate immune function. 

I mean, its also thought now that the steep rise in auto immune disease onset over the past 4 decades, can be linked to the increased hygiene we have the past several decades. Bodies are built to withstand infections and when everything is pristine clean, it can make the immune system turn on itself. Or at least, that is what my immunologists and dermatologist say. Wim has figured out a way to influence this immune system through breathing methods, concentration and challenging his body to go to extremes. He has proven that "you can modulate your adrenaline levels by will. Stress hormones are able to modulate your immune response. There are many diseases that are influenced by your immune system. And you can imagine that it would be of interest if you could modulate that immune response and suppress it, like Wim has proven he can do, and that it might be of benefit for patients with such auto immune diseases.

Whether it can be used to cure actual diseases and inflammatory disorders remains to be proven, but this is at the frontier of science, so it might take many more years before we will understand the full science of how it exactly works. Of course, it's always easier talking when someone is healthy and can 'ward off' illnesses, through whatever technique they developed, than for chronically ill people to be cured from it. So Id be most interested in seeing him cure chronic auto immune diseases through his techniques, more so than seeing him ward them off in healthy people. But the way he controls his own immune response by making his own adrenaline levels go up (in case of that endotoxin infection hospital test), is super interesting. Would be great to find out more about controlling the immune system and auto immune responses, and also controlling the vascular system. It is a bad feeling to deal with all these health issues that seem to have a life of their own, we all want control back then.

The man holds 26 world records according to Wikipedia, so he must have something right. I think that at the very very least, he is great and fascinating for having such endurance. Controlling your own body temperature in a perfect static level while sitting in an ice bath for 2 hours? That's interesting at the very least. I love extreme sports and extreme performers (admittingly, mainly reading about them - K2 expeditions!- or watching them on tv). I would love to go with Wim to Siberia for a real bootcamp. 

June 9th 2017

My skin was really calm the past months.. Think it might be from sunbathing (head covered!) and getting some more vitamin D perhaps, and also the milder temperatures outside do my rosacea good (winters are the worst for me). A month ago I got a bad cold and some pollen allergy issues, however and it turned into full blown sinus infections on both sides of the face. Pain, pressure, sore upper teeth even from the pressure, nose blocked with green smudge (sorry for tmi). I have rinsed with salt water and xylitol and eventually things have improved without antibiotics. BUT... I had this full blown rosacea flare for weeks :( I usually don't get breakouts, or not that many, and now I was covered in them. The white dots on the pics are zinc cream I put on the red pimples.. Luckily it's all calming down now and I keep rinsing my nose with salt/xylitol water to hopefully get rid of all the bacteria, but I started reading up if there might be a link with sinus infections and rosacea break outs. One woman wrote that her rosacea 'disappeared' after she had her sinus issues treated. Now I don't think these are 'cures' for rosacea but maybe some people with regular sinus problems could see a link too in their skin flares? First picture before the trouble started, then during and last one is on a good day today (but I still get p&p's much more than normal most days). :/




The possible link between sinus infections and rosacea is also discussed on the rosacea forum btw, in this link

Someone wrote me a about the way in which Buddhists and Stoics deal with adversity, or more precisely, with suffering. I'm not religious or very spiritual, (am hoping that reincarnation in some way or form is in the reals of possibilities though), so all that was new to me, but it was quite a nice read I thought.. and perhaps also of use for everyone in general who deals with illness or suffering of some sort. I'm going to quote: 

"Yes faith... Even without faith there are some tips on bearing suffering. I just finished Victor Frankl's book Man's Search for Meaning where he describes his life in the Concentration Camps and what he observed in the behaviors of fellow captives, but also the psychological repercussions.

He attributed his and some of the other people in the camps survival to finding a meaning for their sufferings. It was a deeper way to perceive the daily tortures and brutality they faced than the standard way of thinking, "everything has a meaning" or "I am living so I can see my family when I get out". For example, he wrote about a man, whom upon arriving at the camp prayed to god that he may endure all the suffering of the members of his family that were also taken, so that they would be free of pain...knowing that he as asking to have more pain than he would have so they could be relieved. This changed his whole outlook on the pains he faced at the camp. If he was beaten, he wasn't necessarily happy about it, but he wasn't sad, because he knew that because he was getting beat, his family was spared. Now, yes, this most likely wasn't the reality...god didn't step in and let this guy suffer more, so his family could suffer less. Yet, he thought it was the case, and this perception allowed him to handle much more suffering than others could face. I heard that it was also Frankl who would, when the Nazis made them stand still for hours, just wiggle his big toe in his boot as that gave him some sense of control.

The Stoics would also say something similar. They would say that there is no suffering that the gods created that we were not given the capacity to endure. That the gods gave us the power of reason so that we can make use of our sufferings instead of just enduring them for no reason as animals do. The Buddhist use suffering as a way to create more compassion. The great Tibetan yogi Milarepa used to sing a song that went something like this.."I am happy, this is great, may I give all my happiness to all beings so that they may be happy"...."I am suffering, that is great, may I take on all the sufferings of all beings as well so that they may be free from suffering". He is already suffering, so why not take on everyone else's too...even if it is immeasurable painful..its still better if one person suffers and in exchange countless others are free of their suffering. If he is joyful it makes sense to share that joy so everyone is also joyful since he is just one and the others are countless. This can go deeper if we believe in countless lives. If we have lived countless times, and say everyone at one time was our best friend or mom, then wouldn't we want them to be happy too...why should our "amnesia" about our past relationship to them make us not want the best for them?

Dr. Frankl wasn't just trying to convey the importance of having an overarching meaning to life, but also to finding a meaning to each moment we live. We can again can correlate this with certain Buddhist practices. Just like with the aspiration in the last paragraph by Milarepa...whenever we feel joy or have a great experience (see a nice sunset, enjoy times with friends, eat something enjoyable) we wish all beings can all experience this kind of joy (may all beings enjoy beautiful things or have happy times ect...). An conversely with suffering. In one of the Dalai Lama books he writes this aspiration to say when suffering..."May this illness or misfortune serve as a substitute for the suffering of all sentient beings". He also has another one I like..."May the suffering I am now undergoing function as the ripening, manifestations, and conclusion of the many bad karmas that I have accumulated." This one doesn't have the same altruism as the other, but still gives meaning to the suffering we are facing by making it a kind of purification of all past bad karmas (bad things we have done to others).”

I like tales and stories, and also think that we have to find ways in our mind to find meaning in even suffering. Life might not have turned out the way we wanted to but a lot of our psychological suffering is about perception, and how we interpret the things happening to us. How we link it to our expectations. And having low expectations can help in that respect. 
I am so limited in life, on the one hand; not being able to get in the sun with my face, not being able to tolerate warm temperatures, needing a cool breeze so often, it is like being frozen in time in a way. But it is up to me how I value this way of living. I can compare it with everybody around me who cán sunbathe without a worry, who has skin that functions as it should be and without an extra thought. But I can also compare myself to people worse off, or focus on all the things that still function fine in my life and body. Then I suffer far less, and feel more grateful for what ís possible still. 

I found the first years of having rosacea completely overwhelming and depressing. I was frantic about getting it sorted and the attempts to avoid flare ups paralyzed me. I think many people who recently developed rosacea feel this to some extend. On the forums you can read many upset stories. I think you should go through the sadness and the worries and the anxieties, and give yourself that space and that room, because having a malfunctioning body (or skin in this case) sucks, all round. And the uncertainty about how to treat it is frightening too. But with time, most people find treatments, and they find out their triggers and how to get control back over their health and skin. We also get used to the new situation. And learn to deal with the ups and downs, the flares and the remission periods (for those who are lucky to have remission periods). 

I am watching this fantastic Einstein series on tv by the way. "Genius", from National Geographic. I think it is Happy days' Ron Howard who created it.  I am a big Einstein fan. (I know about the controversy who invested exactly what, and whoms ideas were used, but from what I read about it, the verdict is out that Einstein was the one who came with the biggest insights and rounded up what was a mere theory before for thinkers, who all thought about space and time and gravity). I was talking to my dad the other day how magnificent life and the planet and universe really are and how small the chances are on paper to even be born at all. 'Genius' just brings all this magic about for me. The way Einstein came up with these universal laws and truths by simple thought experiments and logic, it is fascinating. Here are some of his most famous thought experiments described. 

Watching it and remembering again what was discovered back in those early 1900-days already, I also got a bit shitty with my old teachers in retrospect, because literally, a hundred years ago it was already known and proven that the planets are not kept in their track around the sun because of the direct gravitational pull of the sun (as if the sun functions like a magnet, pulling the rest close). Just like we aren't kept firmly with our feet on the planets surface because of the magnetic force of the earth pulling us in. It is gravitation, but it works a bit different than what I was taught at school. Why couldn't they explain what Einstein discovered? That it is the mass of the sun, or the earth, or the mass from every object in space, that bends space. And that it is this bent and curved space around the object that is pressuring and pushing us down, and that is keeping the planets in their orbit. The bent space creates invisible space waves around the object, which push, and create gravity as such. The moon has less mass, and as such can bend space less strongly, and therefore makes you able to jump higher from the moons surface than the bigger earth allows. It is so much more magical than simply presenting gravity like a big magnet pulling away.

He also had this wonderful thought experiment, one depicted in the first youtube clip I added below, where he thought of a man standing in a box (or a lift in that case) and it was floating in space, so there was no gravity, and the man was floating freely inside the box. Then suddenly he gets pulled towards the bottom of the box and he cannot see what is happening outside. Einstein thought out that in that case, you only have two possible explanations; either the box has come close to a planet, and its gravity is pulling the man to the bottom of the box, or there could theoretically be some big rope attached to the box, pulling it upwards with high speed, meaning that the man is forced to the bottom of the box as well. And he said: acceleration and gravity are the exact same thing. To come to that conclusion through a simple thought experiment (instead of endless mathematical equations), wow.. 

And according to Einstein's special theory of relativity, time moves slower the closer you get to the speed of light. So theoretically if you have a twin which is born at the same time as you, and you are placed on a spaceship, whereas your twin stays on Earth, then IF that spaceship travels at nearly the speed of light, then you'll both age at different rates. (And even if you travel through space at a slower pace, time still slows down). If the spaceship lands back on earth after say 70 years, you might be going through puberty while your twin is already planning for retirement. In the movie 'Interstellar' there is a good example of this used. If we moved at the speed of light for enough time, going on a space trip, we could come back to earth and meet our great grand kids, if we had any kids.

Here it is explained even more elaborate:

Because we know now that mass can bend space, scientist also understood that it were black holes which they saw on their telescopes, because Einsteins theory had predicted that they would exist. Even though he never knew that they were actually found; he thought it was only theoretically possible, but highly unlikely in reality.. Black holes also bend space visibly; when you watch with a scope you can see how the huge mass of a black hole distorts space around it and sucks everything around it. You can't see a black hole. It emits no light. But you can see its effect on objects around it. And because we can distort space we can also distort time, which is so amazing if you try to imagine that I think.. Even when a clock is further away from the ground, it slows time already (only in fractions of a second, but the principle is the same). They did a nano meter trick to prove it. It measures time very exactly and they put on such clock on the ground at sea level, and another identical one high up the mountain. Let them run for exactly the same time frame. The one that had stood on the mountain for those 4 days, came back with a lower calculated time number as the exact same clock that they had ticking for the exact same duration on the ground. I still can't visualize how exactly that can happen. ... The same happens with these nano clocks if you put one on a plane that travels around the earth, and you keep the other firmly at the ground. The clock on board the plane will come back with a slightly earlier time. 

Here are a few short clips from Genius showing these thought experiments he did:

I have also been made acquainted with haiku poetry. They do seem to work a little bit different from the classic westernized poems, as they only use a couple of lines, and they do not need to rhyme either. Coming to think about it, I think they hardly ever rhyme at all. I'm not even sure what makes them poems therefore, instead of pretty lines, but they do throw up a bigger image and concept in those few lines, so that is very interesting. Here are a couple of examples. This one is from a Chinese hermit called Stonehouse.

A clean patch of ground after the rain
An ancient pine half-covered with moss
Such things appear before our eyes
But what we do with them isn't the same

Blowing from the west
Fallen leaves gather
In the east.

Don’t weep, insects –
Lovers, stars themselves,
Must part.

There is an Indian Buddhist called Chandrakriti who wrote something like this... every meeting is followed by a parting, so we shouldn't be sad when we part because we knew going into it that it would happen. If we don't meet we can't part, if we didn't part we couldn't have met. Kind of like what came first, the chicken or the egg. It doesn't really matter, we couldn't have one without the other.

Last thing, I saw this picture which seems surely staged. But it is not :O Here is an article detailing the background story.

"In 1948, Mr. and Mrs. Ray Chalifoux experienced money trouble and were evicted from their Chicago home. All four children were eventually separated from their parents. RaeAnn and her brother Milton were both sold for $2. The photo reached local newspapers and spread throughout the country. The children were adopted and some lived in abusive homes. The siblings later reunited in 2013. One of the kids did an interview about their plight. This lady went on to have 4 more kids which she kept. "

May 28th 2017

Feeling quite a bit better again lately. Had busy weeks with catching ups of seeing friends and family, which always cheers me up. Unfortunately, an unfortunate mix of the cold and pollen allergy has struck and my nose is blocked and sinuses full for a week now. I'm sure it will pass soon. It's been tropically hot here, 30 degrees C. and humidity of 80%, so I'm struggling to get out. Yesterday I bicycled to the shops in town, but had to zigzag over pavements and side walks, to stay as much in the shade as possible. I still ended up flushed and red, you never avoid being in the sun altogether (if only because biking on side walks is illegal and impossible at some stretches of road). Big hat helped me shield from the sun above, but not from the bright sun reflection coming from below, reflecting from the street and walls. And the heat does the rest. I had most fun on a social media group I'm in, sharing vintage photos. One of my alltime favourite vintage photo's, of  the Brighton Swimming Club, wasn't know there yet, so I posted it and people had a bit of banter about it in the comment section. For those here who need a bit of fun, I'll copy part of the post. I've made the other peoples profiles anonymous.

Natalja Oo Nat.
22 uur ·

The lads from the Brighton Swimming Club, 1853

 John X: top hats r us

Alessandro X: Gotta love those top hats

Traca X: Looks like a fun bunch...

Martha X: Because a fellow always needs a proper hat on his head.

Wilma X: La elegancia en pantalones de baño

Meg X: Other then the bathing suites and hats anyone else notice not one guy is overweight?

Harry X: If I wasn't feeling so bad today, I'd be out there with them.

Patty X: You give me a reason to live
Sweet darling
You can leave your hat on...

X: Love the hats an the fella posing in middle funny to sexy for his trucks and the landing strip

John X: By god i have no problem being photographed in my swim suit, but there is NO WAY you'll get me outta my top hat !! True Gentlemen

Dar X: Holy shit, look how tall those two stove pipes are in the back row!

Noe X: Everything is better with a hat on!

Deb X: studly!

H. X.: How about the guy standing like a flamingo front-left who seems to be pinching his nips?! 😂

Ty X: Was about to comment that too! 😄😄

Leslie X: he is stretching out his (imaginary) suspenders

Kristin X: and top hats no less! Lol

Paula X: I don't understand the hats.

Billie X: They're gentlemen...

Michaela X: The bathing suits for men seem to be very modern!

A. X: Not a single overweight person in the pic.

Karen X: Those British...always so veddy veddy classy☺

Sean X: Pretty sure just hipsters 😋

Ruth X: Top class toe pointing from the second chap on the left.

Nancy X: Top hat and all...lol

Shelley X: Top hats love it

Mary X: They make their 'point' indeed!

Barbara X: But WOMEN weren't allowed to be 'that undressed' ... wow...Gotta love the times.

S. X: I wouldn't want to be that undressed in public but that's just personal preference 🤣😂

B. X: The original speedo's?

L. X: Don't the hats float away in the water?

W. X: Why such a tall hat to go swimming? !!!.:-)

Dar X: A note on placing Maris Piper potatoes in ones swimming shorts prior to taking a photograph. For a more flattering profile, always, and I mean always, place the potatoes down the front and not the back of your shorts.

Ann X: Bahahah good one

N. X: 'Ok fellas, you know the drill, on the count of three, all look stoic and creepy!'

C. X: As long as you were wearing your hat, you weren't naked. In 1853.

Mick X: That's 1 fantastic photo 😀

H. X: This dude in the middle....that's my man.

K. X: at a glance looks like a young Dan Aykroyd.

K. X: ^^^^^YES! I was just thinking that!!! The first thought in my head was isn't that the guy from ghostbusters? lol

T. X: When I see photos like this I have a harder time understanding the why of the Civil War.

Nat: The civil war in the USA? These lads were from England :)

T. X:  Nat. still 1853

Diane X: love the hats

Tony X: By 1920's they couldn't show bare breasts.

T. X:  Oh my!

An X: Oh lawdy. . Looks like a diaper party ... hehehe

Jason X: Reminds me of this...

Nick X: So much win!

Bill X: Hot DAMN! Lol..

Bradly X: What happened to those good ole days? So classy

Ava X: The guy to the right of middle looks like he's wearing a diaper. Must be a swim diaper 😄

Shelley X: I thought that pmsl

Tony X: They are all probably in their undies. Don't think suits were invented yet. Most are probably used to swimming in the buff.

Anna X: Be still, my heart!

C. X: Oh. My. God.

M. X: Oh. Wow. Looks to me like they might get wet and come off. Lol. Wonder if ???

P. X: Love it - Top Hats 'n' Speedos could be the new swimming look of the hipster 😉

M. X; It looks like it's a much older photo.

Nat.: Good 'ole Victorian era!

C. X:  Well, the date given is 1853, so it can't be much earlier...?

M. X: That is not "pretty"!

Gay X: Whaaat

L. X: Love the hats

M. X: Is it just me? Or do some of these guys look a little too "happy"? 😂

Ann X: Yep that about sums it up. I can never unsee this

Mike X: Everyone is so lean.

C. X: Giving "Thunder front Down Under" a run for their money!

Anna X: That's just nasty 😂😂😂

C. X: Why? Cuz they're barefooted? C'mon! It's just a lot easier to swim without shoes!😜

C. X: I love that guy's long....stovepipe hat.

Mike X: Is the fourth guy over touching his nipples? Lol

Nat.:  Yeh that, and maybe an early yoga hipster? :)

S. X:  I'm at a lo se for words!

Jen X: crikey...

Crys X: Some of them look like they're wearing diapers

Sue X: Can't forget the hats...😂

M. X: Omg and thought that speedos were bad.

R.X.:  unusaual want it in the roaring 20s the men had to wear the one piece suits and cover everything or was that an earlier time

Chris X: I think that was the victorian era. They definitely were more modest then.

Jane X: They look like starving swimmers.

Crystal X: Their junk is so fake!

L.: Keep in mind that was before grooming. They all suffered from Don King bush.

Bradly X: You're just hating!

D. X: Maybe they were just happy to see each other.

C. X: How could I hate that junk?
I've just never had the pleasure of meeting a guy like that I guess 😂

Tracey X: I think it is just the the fall of those shockingly made briefs!!

Missy X: Strange..wonder why they're wearing hats??

Steve X: You know they say, "Large hats, large . . . ."

Claude X: So true. (I wear a tiny little beanie).

Tracey X: Bad .....hair!!!

M.: Ooh baby!

Claude X: Thanks! Enlightening...

Vicki X: You can tell that they certainly didn't know anything about the Snickers Bar!

Claude X: Those stovepipe hats appear to be translucent-- as if made out of horsehair-- like Korean hats?

Tracey X: I am glad they kept their hats on.

Crystal X: #8 looks like Billy the kid, and the 3rd from the left was actually handsome.

Marie X: adult diapers??

Sue X: OMG make them put their clothes back on real quick.

C.: Those togs 😂😂

A.: "I'm too sexy for my shirt."

 L: please dress yourselves

Jan X: Awkward

Sam X: quite handsome and i see one or two i'd be enamored with.

Leah X: Those are some hotties right there !!! Lol


M.: Why didn't I think of that!

Jim X: It's still going

John X: Nappies

Jodie X: Bahahahahaha tophats
Mark X: There's always a jokester in the crowd. 

Ann X: Rooster man

Deb. X: oh dear...

Mag. X: unsure what to think of that. cept in those days women were to cover their whole bodys lol

Mark X: I was sort of surprised too. But weren't there also full body swim suits for men?

May 16th 2017

Even though I'd look like a special anti riot police force officer probably, I am still contemplating this UV blocking face shield cap :)

Or this :D

May 14th 2017

My rosacea has been fairly calm lately. Some flare days, usually triggered by me eating too much chocolate, but overall it's been behaving fairly well. I think me having developed a nice tan on my legs and belly is helping, like it seems to help most spring/summers. I still sunbathe whenever I can around noon for around 30-60 minutes. I am lucky in a sense because I don't get a sunburn. or at least not anywhere but on my face. So I can sun without sunscreen. I wouldn't advise this randomly to just anyone reading this, because when you do have a knack for sun burn, it's absolutely not advised to do this. I discuss it with my immunologist who knows me and my skin type and advises me to do this routine because my vitamin D levels are low, very low in winter and spring, and they seem to negatively affect my rosacea and a couple of auto immune diseases I have (colitis, arthritis, Raynauds, allergies).  Rosacea seems an umbrella term for a lot of skin problems that give a red face, but from what I understand and learned now, not every case of rosacea is the same. Or stems from the same cause. For instance, when someone has red skin with break outs and bumps, more often there is a bacterial skin issue or an overload of demodex mites. You can try a new cream called Soolantra then, or low dose doxycycline (Oracea or just low dose doxy, around 40 to 50 mg/day). Or creams like Finacea or metronidazole cream. But with the rosacea subtype that comes only with skin redness, flushing and burning, demodex is far less often a factor. And the flushing and redness are typically hard to treat. I happen to have some success with anti flushing medication, but for 6 years prior I tried every natural treatment option out there. Nothing helped me enough unfortunately. I think that it has been clear by now that not all people with this subtype 1 vascular rosacea have underlying auto immune diseases, but many do. For instance, thyroid disease, allergies, bowel conditions, lupus, erythromelalgia and so on. It's all theory for now, but I feel that here rosacea can be fired up by auto immune activity in the
body, and perhaps even be directly related to it. Not everyone has this. Sometimes red flushed cheeks are the result of too much sun exposure or sun burns in the past. or it is a genetic thing. I only recently heard from my family that gran had red cheeks later in life too. I don't recall any of that myself but she died in my early teens so it's been a long time ago already that I last saw her. There is also a history of blood vessel and heart disorders in my mums side of the family, and a history of eczema in my dads side of the family. So I expect there to be some genetic predisposition at play for me personally too. As I understand it from my derms, some people have a rosacea predisposition: often they have more pale skin, fair features, they blush sometimes more easily (I got pink cheeks from alcohol in my teens). They don't have rosacea, but they are more likely to develop it. All these people sometimes need is a trigger. Which can be steroid cream use (moi), stress, pregnancy, menopause, trauma and for some even something as simple as a vaccination course or a bad infection. But this is all theory still, as no certainty has been given yet on what causes rosacea, let alone how to cure us from it :(

Anyway, so I've been sunbathing and walking in the countryside and seeing friends and their kids, and also for a lot of time been sitting behind my ventilator (never too close by, fans can give rebound flaring then), writing, working, watching movies and series. Same as usual.. 
I have these mood phases, on and off. I find it hard at times to not join the big masses in things like marriage and starting a family. Some periods I'm fine with what I do have, others I feel low about it. The past month I've also had a rather adolescent type of world hate, resulting from the belief that I seem to be an excellent friend for people who need advise, or friendship but then as soon as they find their soulmate or have kids, they move on. Sure, I have friends who stem from childhood/teenage years and who stayed friends, but it is difficult to feel completely part of their world as I am not in the same position. I don't have kids, I don't join in most of their party evenings. I don't even darn drink alcohol! 
I also get tons of questions and 'friends requests' over time from people with my same health problems. Great. There is comfort and recognition in having other people around you who have struggles of their own. But very often they only want to talk about themselves and bombard me with stuff until they figure things out and no longer need the instant connection. I understand this mechanism and am fine with it most of the time, but there does come a point where it becomes obvious that it feels like a one way street. Which bugs me mainly when I am actually pissed off about something entirely different. I basically feel like throwing everything on the ground at the moment :D

I don't want to make this into a whining, self sorry fest, but to be honest, I have periods now and then where I just feel really down about my life. it doesn't matter that others tell me; BUT YOU HAVE SUCH A GREAT LIFE!?!! It doesn't feel like that to me at times. And other times I feel fine. I think comparing ourselves to others is particularly toxic, but also particularly impossible to avoid.. I really wished I had great health and a bunch of kids. I really love kids, as they don't judge usually -if you raise them right-, are playful and they give you a sense of purpose too I think. Luckily I am surrounded by little kids from my friends and sister, if I want to, and all of them seem to love their aunty Nalja (me) and have this wonderful way of stating that Nalja has a red face but then they shrug their shoulders and give you a hug and just want to play with you and have a good time. One even loves it when I bring a fan along and have it on and another walks around for days after I came by with a cloth against one cheek, mimicking my cold pack.. They are adorable and they don't seem to care one bit about rosacea. I am usually done with the child interaction after a day (and long for my cool fan and me time), but at the same time I can't help to imagine how much nicer my own life can be with children; the feeling of being needed and loved like that by someone who just belongs to your life, for better or worse. I have worked with disabled people and kids in the past, as a side job, and it was wonderful. I think I might look into fostering at some point. Child fostering. See what options there are, at the least. 

And let's not forget that I already 'parent' a couple of rascal cats :) Can't exactly call myself 'ronery'. 

Not 'fitting in' and joining the rest is painful. It takes a whole lot of resilience and strength and determination to deal with it. Many people, I imagine, roll into everything do not get this and when something does happen - a pet dies, a grandmother passes away - it might feel like the worst crisis in the world. But I also know people, friends, who have systematically been left out of everything. Good health, finding a partner, having kids, being simply happy. Perhaps the positive that can be taken out of that is that they have the lows and the highs and are learning to really lean and rely on themselves. Its not a fun road but it will give strength and independence in the end. I think. 

On a positive note, I'll be going to New York in the fall for a little while and will meet two of my dear rosacea friends in the USA too then, and I cannot wait. I'll also have a nice month coming up of friends and family shared holidays, and everything is really not as bad as I might paint it off now. It just happens to feel so right now for me.

Some more stuff that got me laughing through all the self pity:

I also finished reading an interesting book by the way, called The Circle. It's good, although simple in style. At some point in the very near future, we will have The Circle which combines services like Google, Facebook, Amazon, PayPal, Twitter, etc. all joining forces and merging into one streamlined system. (I posit that the book describes Google and Apple with impressive accuracy). This system gets a monopoly position and soon takes over every bodies life. If you want anything done at all in life, you have to sign up at The Circle with not just your real, verified name, but also your bank account and social security number. Their objective is transparency and openness. They try to preserve every bit of knowledge which mankind has produced, and then attempt to guarantee that everyone has equal access to it. Under the idea that that is the ultimate democracy. They believe that information is sacred, to be shared with everyone, and they also have catchy slogans which demonstrate the strength of their convictions: “SECRETS ARE LIES”, “SHARING IS CARING” and “PRIVACY IS THEFT”. 

Sounds like George Orwell doesn't it? Well it reads like Orwell, but then in reverse. Orwell brings the citizens of the world under complete Governmental control and has their past destroyed. Owells government also controls information influx and decides what info the citizens are given, whereas in The Circle, there is seemingly complete and free information access. Orwell lets the government watch the people and Eggers (author of The Circle) lets the People watch the government. Orwells ruling government destroys and alters facts and information, Eggers ruling Circle people don't delete or even hide a single piece of information, and he turns it completely around. So here Eggers uses a mirror technique, doing exactly the opposite as what Orwell described, but the interesting bit is here to ask; how different is the outcome of it all exactly? Not that very different I think, they both end in totalitarian controlling systems. Effecting peoples personal freedom and life quality. 

In Eggers' world, people are held hostage by a continuing streaming eye just the same, but now 'voluntarily' (under heavy social pressure, which to me reads much more realistic than Orwells prediction, as I see it happen already in every day life now, with regards to social media). In The Circle, everyone is pushed in the most passive aggressive way to share everything, to report their every move, all on social media, getting rewards through 'likes' and 'friends' and even downright percentage votes. It starts simple for the protagonist Mae; she starts working at The Circle as a costumer service worker, and instantly has to deal with user ratings after each conversation. She gets feed back in the form of a costumer satisfaction percentage. usually this is in the mid 90's range but the Circle aims for 99% satisfaction, and ideally 100%, of course. To achieve this, the employees have to find out why a costumer didn't give 100% satisfaction score, and improve their services. 
This sounds logical in a way. Practical. But Mae is overworked from it in no time, as the calls keep pouring in and on her 2nd screen she has to deal with satisfaction scores, while having to divide her attention at the same time to a third screen where she has to be socially interactive on her social media, sharing everything and updating her followers, liking and sharing as much as possible. 

This is only the start of the book, but it sets the tone for the rest. Eggers uses all sorts of examples and logic to defend the implementation of modern future techniques that slowly reduce personal privacy and freedom, but always for the greater good. In this case the greater good is to have a functional and fast customer service. Great for the client! At the moment, costumer service is a mixed-bag. Some industries almost seem to have a vested interest in making it as difficult as possible for the consumer to reach them. Banks, insurance companies, corporations, Amazon.com. Mistakes happen, but never in your favor. No one wakes up to more money in their savings account than can be accounted for, but it is not ultimately surprising when a payment doesn’t go through, a payment is double-processed, etc. If you call a bank to rectify an error, it is in their best interest to make it as unpleasant as possible to discourage people from making a stink about their questionable business practices. With $20 missing from your checking account, it may not even be worth it to deal with the time consuming and costly call center customer service system. Telecommunications companies are notorious for this as well. Google and Microsoft make an effort to help you, at least. If you take the time to call them up, their CE techs will at least dedicate the time and effort to helping you resolve the problem (when possible.) The sort of companies whose reputations depend on keeping their customers satisfied will make the effort. If Comcast is the only business in town for cable television or broadband internet, they could give half a shit whether your service is working. If your only choice for health insurance is Blue Cross/Blue Shield, they might not exactly motivated to bust their behinds on your behalf.

So, given all this, The Circles aim to be the best costumer service around sounds good, preferable even. But it's just the start of a trip down the rabbit hole, as I read the book at least. Soon Mae is forced to divide all her free time over social media activities, 'being part of the community' by zinging (zing is the future equivalent of twitter) her every thought, move, idea and experience. She has to join multiple online groups, go to meetings, like and comment on as much online activity as possible and build up an online status. She works round the clock and learns the hard way that missing out on these things is not appreciated. Although the author doesn't flat out write it out like a horror show, he does paint a claustrophobic image of bees in a bee hive that slowly but surely lose a lot of privacy and personal freedom.

For instance:

-There is no anonymous online trolling possible anymore. You are always just yourself online now, as your account it verified based on your ID card, bank account and such. 

-The Circle is a Silicon valley type of company that works on all sorts of technical inventions. They soon come up with a video device that is hard to detect (some sort of stick) that gives live video footage to the net. These camera sticks can be placed anywhere you want, and give a live, perfect HD image stream of a beach, or the market square in Cairo, or any place you want. And peoples own homes and work places are constantly videoed and broadcast as well. They call it SeeChange. Orwell brought up the same concept in 1984, only there it were television screens and it was the ruling elite class that had access to the footage, whereas Eggers makes a case for free access to the rest of the world of all this info and data. Yet it eliminates personal privacy. 

-Then there is ChildTrack, a smart one, which plants a small chip in your childs bone, making it possible to trace them always and keep them safe from child predators and such. ChildTrack is a logical extension of the constant tracking of people. And a smart one too, as it appeals straight to our basic fears and parents' direct desires; helicoptering their kids and keeping them completely safe. That it is then extended further in no time into SeeYou is no surprise. I personally like to extent this one to my cats 😊I like to know at all times with GPS precision where my cats are. 

-PartiRank gives you status points more or less, for being online and sharing a lot, receiving likes and online prominence. It makes sure that everyone is using the Circle system optimally and is at their desk/phone/computer pretty much all the time. A good way to keep people controlled and online. 

-Demoxie is a smart invention, that allows everyone who is registered at the circle to vote online. And more; it forces you to vote, barring access to the social media pages until you voted. 

-SeeYou tracks anyone with a criminal record, and allows them to lighten up with a bright colour for police and other law enforcers, later for the public at large too. This reminds of Minority Report the movie. Though there is a lesson to be learned from Minority Report. PreCrime all but eliminated murder, rape, and kidnappings as well. Yet when it became clear that it was fallible, it collapsed almost instantly.

-Then there is a device you carry, that tracks all your vital body functions and detects everything from low or high blood pressure to temperature changes to signs of an illness and communicates it with your doctor. This is super handy, but also opens the door to wide spread use of this info by health insurances.. 

-At some point Mae and others start wearing cameras around their neck, broadcasting everything except toilet breaks, 24/7. “Going Clear”. Their work, their sleep, the people they meet and talk to. This is done under social pressure by The Circle, and Mae being the perfect employee by now obliges readily and inspires others to do just the same. It is not the same thing as having a television in your apartment that you cannot legally turn off or step out of view of the attached camera (Orwell), but just how different is the outcome really?

It's not really clear how the author thinks about all he writes about himself but I read his book as a warning, just like Orwell wrote his books as warnings. Because he shows us how the protagonist starts working there and gets very impressed by it all and morphs into this perfect little and later famous worker there, but she gets increasingly more insufferable. She slowly turns into an online addict who gets more and more lonely and mentally unstable as time goes on. There is a point in the book where she is so lonely that she only gets her nerves under control when she mindlessly fills in online customer surveys in the middle of the night, calming only from its robotic rhythm. She has millions of live followers ultimately, but she loses the real contact and closeness with her parents and friends.

The SeeChange camera's are also making it eventually impossible to remain unanimous and go about your own life unwatched. Apart from the fact that I didn't understand why Eggers stuck to these visible and not camouflaged camera's when he had already mentioned recording contact lenses earlier in the book (which are much better protected against vandals), Eggers does a good job in giving just the right case study examples to make a case for his inventions. But I don't understand why people would feel good about being recorded by cameras everywhere they go. Isn't part of the joy of this life the sensation of freedom and autonomy? Taking the car and going somewhere and not being traceable. Not being online and in contact with X hundred/thousand/million followers. 
And Orwell brought up the same concept in 1984, only there it were television screens and it was the ruling elite class that had access to the footage, whereas Eggers makes a case for free access to the rest of the world of all this info and data. That is a difference, but for everyday people undergoing the constant following, the outcome is more or less the same I think. Mae, recording her life 24/7 at some point,  notices the implications of it first hand when she feels uncomfortable eating that 2nd cookie for the eyes of the world, or not cleaning up or dressing to the notch once she carries her camera and is traceable and visible for all her followers, also at her work desk. That level of social control and complete lack of privacy (bar the toilet sounds) is frightening to me.

Transparency has good sides for sure, especially when it allows us to expose corrupt elites who put their black money on the Cayman Islands. Besides, facebook is ALSO saying that they are pushing the world in the direction of making it a more open and transparent place. I do agree with the transparency needs for the elite and the rulers. But I do not believe that the top rulers will let it ever get as far as in Eggers story. He brushes over the practicalities of it all way too much i felt. The Circle is a powerful company, yes, but the ones ruling the countries behind the scenes will not give in so very easily, allowing everything they do to be recorded and filmed and be open for the public. Lobbyists can prevent or provoke practically everything and anything, and there is no way that the rulers would just bow to public pressure as easily as some do in the book. No way.  

The whole PartiRank concept is just a popularity ranking system which is not far away from our current social media situation. I guess the aim behind it is controlling people and making sure they are using the Circle system optimally and are at their desk/phone/computer pretty much all the time. I expect that the rating concept will become more important in the future. Already the ' like' scraping is important now. Eggers makes a funny leap when he describes how Mae's bedpartner is so hooked on ratings, that he asks her to rate the sex they had afterwards 😃And he wasn't satisfied until he got 100% score, while he could have known his performance wouldn't have even warranted a 70%. They are shown by Eggers to slowly but surely get addicted to the concept of ratings. I bet in time everything you put out there online will be rated by others. Those with the highest scores will become our new celebrities in the future.. 

Demoxie was a smart invention. And one I actually agree on, in its basic form; people who are allowed to vote should vote. Just like in Holland everyone is an organ donor by law, unless they make an official objection against this. Make the effort to correct the ' error'  or you are automatically forced to do the right thing. (which is a subjective statement). This was an excellent and not objectable idea and the online voting is a good one too. Democracy doesn't function right unless everyone joins in. Marine le Pen has lost in Frances elections, but at a point when half the voters already predicted not going to vote, she was already making claims of having 40% of Frances support in the days leading up to things. Yehh... 40% of 50% of those who are allowed to vote... not quite the same.. Another bonus is that we will see the end result very quickly, when the voting is done digitally. However, how do we know the counting isn't rigged somehow? I guess we don't know that with full certainty now either. 

SeeYou is in essence a defendable idea too, but I fear it will quickly derail into a much larger system where not just criminals are able to be seen and tagged, but where everybody will be seen and tagged. Law enforcers focus on any human being and get the digital info about them in a millisecond. That is a breach of privacy as we know it, no matter how ' practical'  this might be for officers and the law. So I like the basic idea but given the direction life is pushed in in general in The Circle (the book), I feel it is too much controlling and too little freedom of movement and privacy. I'm hypocritical here 😊 I like criminals and rapists and murderers to be detectable easily in a crowd, but I don't like all the next steps that might and probably will come out of this eventually, like tagging everyone, tracing everyone's movements. In Holland your are asked all the time to have your medical data thrown in a national database. They keep asking patients to allow this data to be made public, so that lives can be spared in case they have a medical emergency in another part of the country, say, when they visit a friend there. One push on the button and the doctor over there can see all your medical history and medication use. Which is very handy indeed. But, it is also visible for all insurance companies and state institutions. I don't want health insurances to know everything about me, because you know in time they will use it to crank up your fees, as is already the case in the USA I think. (I'm not sure about that). Medical details should be private between doctor and patient and perhaps their pharmacy. Imagine you having had psychological health issues, overcoming it, getting invited for a job interview and the interviewer does a basic check up on your health data, only to read that you once were suicidally depressed. Bam, gone is the job for you. 

That being said, the device to check your vitals and health is a great one. We should all get a wrist device to measure everything and decide ourselves if we want that info shared in the open, or kept private 😊 Going Transparent should always be a choice. In Eggers world, you can already feel that soon, everyone opting not to be transparent will be labelled a suspect and an outlaw. Or at least, that's how I interpreted it.

Just because some things are technically possible, doesn't mean that they should be implemented. There are always different interests at play and I am all for changes that benefit the greater good, but there is always a different side to everything. Who would a new rule benefit and who would it harm? Does it conflict with basic human rights? What are our basic human rights anyway these days, which ones should we let go of and which one should we hang onto? And then there is personal preference too; maybe you like the way social media and the net have connected us all, but I think it has a dark side too, where it isolates people, makes them like addicts and zombies if they overdo it, and makes us badly monitored. Eggers has someone say in the book at some point that our brains are small, and not meant to contain all the information of the world.  We are overloaded at the moment with information, tasks, social activity, sharing, participating, not missing out. People get burn outs from it. It makes us stressful addicts of news and social (online) participation. 

I understand that people want to belong, and I understand that (almost) nobody wants to feel an outcast, so that the pressures of social media, and having behaviour that makes you fit in, is a very powerful stimulant for people. But many people are also prone to addictions and to habits and wouldn't it be sad if we end up with humans who only feel safe and validated when they share their everything with the greater community, and are always online and marching along with the status quo? Eggers truly delves into this phenomenon I feel. And I read his book as a warning, just like orwell wrote his books as warnings. His protagonist Mae starts off weary of the constant posting and zinging and sharing every life detail, but ends up the worst of the bunch, and feels a huge sense of accomplishment over it, which makes her a chanceless, non introspective victim in some readers' eyes. 
I also felt that Eggers was critical of what he describes himself, because I felt that he really tried to say that despite all the pressure to put everything online, the fact that Mae did a marvelous solo nightly canoe trip, secretly and near the last part of the book, and he made her not zing about it, or even make a single picture of it, tells us his true view on all this shit: we film and we post and read social media constantly because we try to not miss out and to capture that special thing in words or pictures. I once videoed an entire concert of a band I like called Saybia, standing front row and I missed half the concert with fretting about camera angles and audio quality, only to find out back at home that the sound quality was abominable and the video quality even worse. Unusable, and on top others had already put much better videos of the same concert on youtube at that point. yet I missed the live experience of that band for a good part. Dumb...  So we try to capture some exciting moment or feeling or experience that we are afraid to miss, but the things about life that we most want to capture may not be, in the end, capturable.

But then again, maybe Mae is normal, because Harvard researchers published this research, proving that sharing personal information online gives rewarding vibes to the brain. As part of their study, they asked participants to undergo fMRI scans while stating opinions. The researchers found that “humans so willingly self-disclose because doing so represents an event with intrinsic value, in the same way as with primary rewards such as food and sex.”

We should have a cooperative system in the world instead of a competitive one, but this aint gonna happen with our economic system and ruling financial elite. Maybe the Swiss should be an example as they have a small population and the people they do have, have a lot more direct power than any other western country; they can challenge the law personally, even when it has passed in parliament. It tales just 50,000 signatures to get a referendum on any topic that got passed in parliament and the outcome of that national referendum is definitive and has to be implemented. In a way, Eggers brings that one over to the Circle users. Direct voting, direct influence. Only... small side note.... you HAVE to be a member of the Circle to get these rights and opportunities 😊 A commercial company btw, not an independent and neutral entity. A commercial company.

It even reads in the book: 
“We’re closing the circle around everyone—it’s a totalitarian nightmare.”

To me the book eventually was quite scary. Freedom includes the right to be an asshole just because I might feel it's the right way to be for me. The whole micro cameras being shoved inside people's homes and in the cities of foreign governments without their consent, are also used to manipulate and control us. The whole episode of Mae being brainwashed to zing the shit out of her life represents the brave new world aspect of the Orwellian nightmare awaiting us in the future that's lying ahead. Eventually I ended up more or less disliking all the Circlers and their cult like mentality. Society also needs the deviant types. The rebels, the nay sayers, those going in another direction. We might be coming to a point where a change of mentality of thinking is going to become prohibited. A society that doesn't evolve dies. One that evolves artificially is also a zombie society and that seems what Eggers might be warning for. Some sort of a synthetic society of children which communicate through likes.

Secrecy and lying is useful too. The non proven belief of religion is important to make life bearable for a lot of people, and the illusion of magic is important to keep creativity stimulated. And with regards to secrets needing to be eliminated and the truth needing to be out there always: I believe that some things are best not told. For instance, brains sometimes block and obliterate traumatic events so that the body has the ability to continue going on normally. In practical therms the brain is lying to the body, but it's for a better... survival. 
I believe this current love for the 70's/80's is somewhat of a reflex to this. Everyone says that the 80's were great (me too, I have a sudden strong love for the 80's lately). Some say that maybe those were our best years. We saw the roots and the start of our modern current society in the 80s, but half the shit we have today we don't need, and back then things seemed or felt more genuine and real. Sometimes the technique is simply out of tune with our real rhythm of living. For instance Amazon is going to deliver books by drones, with a self imposed deadline of two hours after purchasing. Because you're a retard who can't wait for your shit through regular snail mail like everyone else. It's coming to a point where technology is just being used for retarded stuff like that. I wished they were using technology more to try solve actual problems in the world that really matter, instead of for commercial goals.

Update, some more thoughts on the Circle:

I think that Eggers thinks that he has created a true democracy. Yet often, democracy is impractical. There is a reason that we do have them in national governments. Democracy as the Circle envisioned it would undermine stability immediately. It would turn the business of government into a reality television program, subject to the fickle nature of the trends. It could have positive benefits, sure. The negatives would be far more detrimental overall.

The biggest issue that Eggers described in The Circle for me personally is genetic privacy. If my DNA is such that I am more prone to develop heart disease, then it should not be used against my interests (getting health insurance, getting a job etc).Naturally, a lot of people working at health insurance companies do not want that to be the case, they want to charge higher rates for people that are more likely to develop diabetes… just in case. Or think of how this info could be used by companies, preventing them from choosing to hire people based on their likelihood of becoming sick later on. Why hire James if his DNA has made it clear he has an elevated risk for liver disease or lung cancer? Which is a brilliant idea if you’re a millionaire/ billionaire and want to keep costs down. It is a nightmare for the other 99% of society however. We know which will win, if given the opportunity.

The Circle has devices which monitor your vital signs. We already have the technology to scan retinas and fingerprints. Could we incorporate the ability for your devices to detect eye-strain? Could we read stress levels? If so, would it not be within the realm of possibility to track sleep patterns, even? If your eyes are strained, your device can disable itself except in the case of emergencies. Prevent you from working too many hours at a time. You can authorize your home computer to determine the hours it can lock itself to promote healthy sleep habits. All this would be voluntary

I no longer think dystopian was the right word for the book. It's not like it deals with tyrants, burning earth, raging plagues. All that hasn't happened yet in The Circle, although I did feel he described a civilization that is on the edge. That makes the book very realistic too. And maybe it's also more a mild satire. And The Circle is also in part a novel of ideas I think, as it's written in a simple style with pretty much one dimensional characters. Ideas about the increasing corporate ownership of privacy, and its effects on our democracy. Information is power, and both what we include and what we withhold can be powerful. And since so much information these days is provided through the net, their gate keepers have power. And access. And then there is the tyranny of public opinion on top off all that. And whether privacy is theft, yes or no? I think Eggers might have taken his own technological advanced suggestions serious in the sense that some indeed are clever, practical and improvements to the status quo. Orwell’s vision was more simplistic. It is relatively simple to enforce a tyranny. You create a set of rules and send them out to be obeyed. They do not need to make sense. They can even contradict earlier rules. People generally go along to get along, more afraid of the consequences of disobedience than they are willing to rock the boat. Huxley and Eggers take a more realistic view on modern society, in that we train ourselves to believe in bullshit. Big Brother is not a firearm pointed in our direction to ensure obedience. We tell ourselves that this or that is the prevailing wisdom that it makes sense to enforce en masse.

But I can't shake off the feeling that at the same time, he wrote this book as a satire and a warning. It's like he is reminding the reader that people can be led down a dark path much more easily with good intentions and promises, than with bad ones. It was a warning that too much can be too much.. Mae is chased around like a mad dog in the end. They just made it clear to her that she either made it or faked it with those zings, as long as she was active and visible online all the time. But the end result seemed that due to the immense pressure and time it took her to comply to all these demands, she became hollowed out by all the exposure and pressure of the social media lifestyle. I felt it affected her mentally in a bad way. You need an off stage space too, where you can have your off time, your privacy, your room to recharge. In The Circle that zone-out space was reduced to the toilet cubicles and a short time window used for sex. That seems too much. Or not enough I mean, not enough privacy and "off" time.

The underlying warning is aimed towards the way in which big corporations can gain monopoly positions in the near future, also thanks to their shrewd usage of phrases like creativity and freedom and of course, CONNECTIVITY. It is rammed down peoples throats what importance connectivity has to your persona, your image, your happiness, your status. In the end, the biggest aim is for a company like The Circle to become bigger and more powerful (I think).  The Circle make their company an essential part of every day life and politics and even of democracy. Voting equals a Circle membership. It is brilliant and sold of course as a service for mankind, a step towards democracy. But from a PR point of view, it is very smart for the company itself too. The big picture to me is this immense place the company wants to take in, the techno titan it wants to be. That goal is so important that the means are a free shooting fest. Making people addictive slaves to their technology? Hell yeah. And they sell it as a service to humanity.

They probably wouldn't have stopped where the book ended; they would get their own currency too. Sure thing. And anything else you can think of that makes them irreplaceable in peoples lives. If you vote, pay, navigate, socialize, shop and entertain all through the Circle, it makes total sense to have them sell gift cards at some point. (not as a replacement of real state printed currency, but in addition, call it Circle coins,  functioning perhaps a bit like bitcoins?). And sell credits for the use of zing and text and such perhaps even, further down the line? Or maybe not, they want to encourage people to use those features, not demotivate them. The circle is far more pandering to people's worst impulses, than newspapers ever were. Which also links to the current state of affairs of our society as a whole; never before have we been this media-saturated, technology-crazed and apocalypse-haunted as today, it seems.

Their emphasis on good, transparent government is admirable. Transparency of anyone of interest, we can make a case for that as well. A big push for voting is another good one. Tracking criminals and suspects, well now more than ever we need that actually. I just hate how everything is monetized these days. Our google data, our social media info, our everything, it is sold to the highest bidder. But that is also a general thing. You get the same thing when you take your kid to the zoo. It is not a matter of fees, as that is reasonable. Services cost money, which is normal, but our generation has seen the rise of cradle-to-grave commercialization. It starts with advertisements aimed at kids, and it was even more straight forward back in the mid 20th century than today:

My sister went to New York 2 months ago and insisted on going to the opening Mets game. Bought herself and her partner a shirt and a cap too, and some food of course. I believe the whole enterprise cost them over 500 dollars. The shirts and caps were well over 100 I think she said. Amazing experience I am sure if you love baseball. But why so so so expensive ? I am not even thinking about tourists like her, let them pay, honestly, but the local kids, the fans who aren't nouveau riche or jet setters offspring? Who can afford such prices? And a club with a stadium of homegrown working class fans brings so much atmospheres.. Why make everything so expensive

Back to the Circle: I think that ultimately, they will make entire databases with our identity info... They already have them for criminals, including DNA profile, fingerprints, pictures and the lot. I think this will be like the start up of the web; it will take time to digitize it all, but ultimately, we will all be filed, our DNA, our fingerprints, our retina scans, and they will sell it by saying that crimes will be solved so much quicker then!  They might initiate it all under the pretext of safety, if terrorism increases in the future. But where humans are, there is opposition to the status quo, so people will find ways to create fake identities or change their identities altogether. Either through hacking or through actual physical means to change their finger prints and retinas and even their DNA in a far far stretch? Although I don't have a clue what that would mean for their body, I assume that won't be very easy at all to achieve as the immune system wipes out everything that is genetically alien for now, as it stands.

There were plenty of funny bits in the book too btw. I liked some of the descriptions, for instance the way Dan was described to nod "emphatically, as if his mouth had just uttered something his ears found quite profound".
Or Mercer, spending hours thinking of ways to "unsubscribe to mailing lists without hurting anyone's feelings" ? Or Gina calling Mae Mae, instead of Maebelline (after the make-up brand), and the light joke that came from it: “MaeDay. Like the war holiday. Isn’t that cool?”. Mae then not knowing what that war holiday was exactly, but I hope it's safe to bet that every reader got the MayDay hint. The distress code signal. But there is more, because May Day was indeed a holiday of sorts over time, and eventually used for the day in which military parades, totalitarian power shows, were organized in Stalins time. That one links to the KGB and in extension to Orwell. So MaeDay has quite a few interesting references.

I didn't expect multilayered personalities with deep twisted psychological alleyways in this book, and we didn't get any of those either. Mercer mainly has dialogues or monologues that come down to warnings of how the internet gets in the way of human communication. Bailey tells us all the good that comes from the same internet and social online community. Which is fine, but it is always better to have the reader discover all this, rather than him or her being told. But that wasn't all that important in the big scheme of things, because the story and their very realistic ideas were the centroid of the book. And the constant challenges it poses on what you, the reader, think of it all. Who do you sympathize with, which of the polar points of view do you side with, which ideas are too much and which are innovative in a good way? Too much social media activity is described as a dangerous thing in the book. Of course, the internet isn't all bad and also has strengths. The level of interactivity it brings, for instance. Books themselves do not, and neither does television as a medium in itself. So that alone is a big benefit of the net. The prime worry that people have with the net is privacy, which is directly linked to (capitalistic) predators or the government. And in this book that concern is touched upon a bit as well I think. But such fears are inherent also of the new technology kid coming to town. People had worries about television as well. Even the radio would keep us from reading in the eyes of doom thinkers.

The idea of using an internal chip to track children might be seen as common sense. We do it for pets, after all. We do it for our cars and notebooks. Of course, Eggers didn’t delve too deeply into the particulars, it was mostly a minor plot detail to help frame Mae’s relationship with the two-pump chump. I have no doubt that it will be a thing of the future, at the very least for electronic surveillance by the government in criminal investigations. Tagging everyone is ridiculous and wrong however. Whereas Google has no such limitation. An employee with sufficient authorization can sift through our emails at will. I doubt Google allows this, but what is the worst that can happen if said employee is caught doing so? They lose their job, at worst. If this sort of thing is sanctioned at a high enough level, even that is not likely to take place for this. If the American Government uses these chips for investigation purposes, I imagine that the chip can be activated only with a missing persons report, for example. Once the kid has his eighteenth birthday, the access to the tracker for the parents is stopped. The government has no access to the tracker (and the Circle can stonewall them indefinitely) without an approval from a judge in pursuit of a criminal investigation. It is an idea that can be made to work. But given the crudeness and brutality of mankind, I can imagine the sort of crazy shit criminals can do to extract that chip from bone. They would have to take steps to ensure a criminal wouldn’t simply extract the chip from children, for example. That it has to be installed in a manner that makes it difficult to remove would make it equally daunting for a child that has reached his eighteenth birthday to elect to have it removed. Even if you were to choose to deactivate it once an adult, how can you be sure it is idling?

April 20th 2017

After a month long flare, my skin seems finally to have calmed down a bit again. Which is a relief as having a burning and more than normal red face, without much respite and regardless of your usual anti inflammatory diet and other happy life triggers, is beyond depressing. Add to that the Easter holiday - I somehow miss having a family in weekends, especially Sundays, and during holidays - and you get a lethargic and grumpy person who hardly feels the urge to stop watching tv series and other forms of mindless procrastination. Instead I had to go to an Easter meal with a group of people I didn't even know well, which is daunting for me even when I'm in good shape. Now it was draining; trying to appear care free and cheery, trying to ignore a burning glowing face, trying to avoid the worst trigger foods without looking like a rabbit who only eats salad (yet who isn't model thin anymore, like before I started mirtazapine for my flushing). I was happy to be home again, frankly. And to be able to put the fan back on. I am past the initial awful years of rosacea, when the anxiety and depression of having all these skin triggers, and no longer having normal, reliable, stable skin anymore, hit me like a ton of bricks. Having this for 18 years already now, made me live with rosacea almost half my entire lifetime by now, so you do get used to the craziness of hypersensitive skin and constant flush tendencies eventually. I don't think I really ever got my complete care free and bubbly old self back. sad to say, and I don't mean it in a dramatic way, but I think many people with rosacea openly or inwards dream about a week of respite. A week off, and what we would do then. There was a threat once about this on my beloved Rosacea Forum, and the majority of people mentioned days at the beach, in the sun, drinking alcoholic cocktails I remember haha. Then eating double sized pepperoni pizza's with buckets of red wine with friends, then going on outrageous dancing fests. All the stuff that we don't do with complete care free attitudes anymore these days. 

But despite getting used to all this, I still have periods of feeling down. The depression can be awful.. I usually force myself to be busy busy busy then, with writing or freelance work, reading, meeting friends, organizing or tidying things, getting lost in movies or tv series, or anything really that distracts. I usually find after a given time that I feel better again then. Like waves passing by.  Something else that bothers me these days is that I hear and read all sorts of future promises that scientist talk about and say are in the pipeline. I've seen videos of limbless people controlling robotic bionic arms with brain implants, steering them simply by thinking about it. Scientists are working on the exact mapping and understanding of our DNA now. They are already rebuilding pigs with DNA deviations now, to make them grow older or without illness. Soon, we will become even more integrated with technology. After all, most of us already have symbiotic relationships with our phones these days, so that step isn't even as big as it might sound to be now :) Some people these days have shown severe addiction and anxiety and restlessness and obsessive thoughts if they couldn't touch their smartphones, while participating in psychological tests to investigate these things. Especially when they heard pings, but weren't allowed to touch the phone.

I think that at some point in the future, nobody will be eating meat that came from an animal anymore. The lab will grow meat in the future. Labs will grow meat for consumption, that isn't made from dead animals. It will look and taste exactly the same, but be made through gene therapy; it would be a sample taken from animals, which is then grown. Or even cloned and copied indefinitely. Our current times might feel very modern to us now, but they will be old news sooooo soon from now.  We seem to be really on the tipping point between an old world without even mobile phones and the net, and the future that is full of technological advances and automatization and such. They can probably soon take a cell from your skin and from someone else, and turn it into a living baby in the lab. Or take just your own cell and make a clone from it. And add to that, that existing people can live 150 years at least by then, and have the ability to replace their organs when needed, by perfect copies of their original organs, through stem cell therapy, growing the perfect replicas in the lab that do not cause any rejection issues. There are some scientists that believe that people have already been born that will live for hundreds of years.

Yet here I am, anno 2017, still stuck with a malfunctioning body. With a skin that is out of order and a body with all sorts of auto immune diseases, for which nobody even has found a cure yet. It's absolutely hopeless making sometimes, having all this knowledge about advancing technology, yet being burdened with something that most likely will be a thing from the past sooner than later. Most likely just out of my reach. Soon they most likely can create new healthy skin for everyone, with repaired DNA. Luckily, a lot of people with rosacea can eventually find a treatment that works for their skin, calming things thoroughly down or even going into remission. Granted, the flushing subtype 1 tends to be a bit more difficult to treat, but there are options, including anti flushing medicationanti inflammatory medicationdiet changes, natural supplements or laser/IPL treatmentsI know so many people who used to have subtype 1 rosacea so very bad and who got it almost completely under control eventually. I happen to be unfortunate in that IPL didn't work for me and even made me a lot worse during my first ever treatment. And I'm unfortunate in that my flushing is quite severe and hasn't gone into remission (yet). But I keep on track with the things that do help me and my rosacea is a lot more bearable now than before I saw Professor Chu and started anti flushing medication. And for everyone still out in the woods, I would advice to take things one step at a time, and to make a list of all the treatment options and all the medication and supplements you think you will want to try. And to start testing and find out for yourself what works and what doesn't.

All rosacea cases might look alike, but I think they are often very different. Just the difference between subtype 1 and 2 is already profound. Rosacea seems an umbrella term for skin conditions that all deal with redness and inflammation, but which are otherwise quite diverse. Flushing and burning requires different treatment usually than permanent 'solid' skin redness and bumps and outbreaks. Antibiotic creams and pills often work for subtype 2, and if not there are also Soolantra cream, low dose doxycycline (oracea), topicals like tea tree oil and low dose roaccutane even to help out, but none of these are typically a solution for subtype 1 rosacea, with red hot skin and flushing that comes and goes. Subtype 1 is often much more about blood vessel disorder, or underlying firing up conditions like allergies or auto immune diseases or hormonal or central nervous system things, that make the blood vessels widen even more. Often people with subtype 1 also have thin and sensitive skin that doesn't protect anymore. There is a lot less known about this one, and demodex mites and bacteria are less often playing a role in subtype 1 than in subtype 2. And when people have underlying auto immune diseases, then these can be like a fire under the rosacea. Many people with rosacea seem to actually have a digestive disorder of some sorts, or auto immune diseases, may it be thyroid disease, IBD, asthma, arthritis, erythromelalgia, lupus, allergies or another one. There have been people with full out rosacea skin, who turned out to have a mast cell disorder and a histamine intolerance, or a food allergy all along. Then fixing that problem or cutting out allergens can be enough for the skin to recover. So it is complex.. That's why you need a good doctor or dermatologist to help put the puzzle pieces together and do additional testing. Typically dermatologists want to rule out lupus and carcinoma cancers, which can give a rosacea like skin appearance. But then there are other skin conditions that might look like rosacea, including regular acne, eczema, dermatitis and seborrheic dermatitis. 

Anyway, when you struggle with a red and flushed face, I would personally approach this problem very strategic, which helps you eliminating possible causes and treatment options, and also might help you to feel at least a little bit of control, in a situation where your skin will feel definitely out of control. Control taken away by rosacea and its many flare triggers. When your skin normally was a protective shield and something that was just there, just functioning as normal, it can be devastating when it suddenly stops protecting. Stops functioning as usual. On top, rosacea flares might not always look look you are on fire to the outside world (and sometimes they do), but even pink cheeks can feel to you as if they are on fire. And that is a frightening sensation.  

Some people asked me if I think that subtype 1 rosacea automatically turns into subtype 2, if you let it roam free long enough. I don't think so. Or it didn't happen to me at least. It does seem to happen to some others, if I am to believe the literature on rosacea. But for me, I have had type 1 for 18 years now and I have never developed into stage 2. Sometimes a long period of facial flushing makes my skin break out a bit in small red bumps, but they are the result for me of face swelling and inflammation, not of a bacterial issue with the skin. They go away soon enough again for me , and when I can control my flushing for longer periods at a time, I don't seem to get the break outs either. 
However, I can trigger them by using skin care products that my skin reacts to.. With subtype 1 rosacea, with coming and going redness and flushing and burning, you need to focus I think on getting the flushing under control I think. The longer you can stop the flushing and the longer you can bring the redness back to a more normal skin colour, the more chance the skin and blood vessels have to calm down. I flushed for a year straight in 2005, no exaggeration, and I was convinced that it was the death stabbing for my skin. that I would never be pale again, that my blood vessels would have spread and spread into this vast red network, never to be normalized again. But only a week into my new anti flushing regime, and my skin could look pale and normal again for periods on end.. I don't have big visible veins I must stress, no telangiectasia. 

When you go to your doctor or dermatologist and you want to try a certain medication for your rosacea, then I would advice you to print out medical papers, ideally from Pubmed or so, that states that research found this or that medication to be beneficial for rosacea or for the treatment of hot flashes. On my blogpost on my medication I have already provided links with every medication I take. Doctors might feel unwilling to prescribe these medications for good reasons, but sometimes they also just don't know that there are ways to treat the flushing and burning. This is one of the most debilitating aspects of rosacea, yet there is very little information out there or research done on how to treat this aspect of rosacea. The medications that my London professor uses to treat his rosacea patients are not specifically designed for rosacea. Yet they have a long standing record to treat other conditions, of which we can benefit. Luckily there is research done for each and every one of them for the treatment of hot flashes and sometimes even for the treatment of rosacea. Use that information to show it to your doctor. they don't always know every little corner of the specializations of less well understood conditions like rosacea. It might also help to print out some patient reviews, especially The Rosacea Forum is a massive database of decades of rosacea patient information and experience. And in case you flare, but not on the day of your appointment, you might want to consider printing out a full flare picture of yourself. So that the doctor sees what your skin can look like on any given moment. It is also important that if you feel pain and burning, that you emphasize this to your doctor. Rosacea is all too often seen as a primarily cosmetic condition. And though it sometimes is just that, often it also gives a lot of neuropathic pain and skin tightness and downright acid like burning. The amount of skin redness can be indicative for the level of nerve pain, but doesn't have to be. I used to just get pink in my early days, yet I would feel like my skin was on fire all the same. It was very difficult back then to explain this to my family and friends. And even to my GP.

My blood vessels seem hyper reactive; anything can make them dilate and get the heat and blood gushing. I have literally asked doctors, in my worst year, if I couldn't get a skin transplant. Crazy as this might sound, I thought about skin burn victims and how someone like Katy Piper doesn't seem in pain. She had a horrendous acid attack on her skin. You still see her scars, but when I was burning up in a never ending inferno, I rationalized that her skin at least seems robust now, even though you can see she had injuries. She can wear make up, she can go to dinners, she can go out.
And since the skin everywhere else on my body looks and behaves normal, I have asked doctors back then what the options were to just get some skin off my back or something, and patch my face up with non burning, non red skin. I know this might sound offensive to actual skin burn victims, but at this point I just wanted the burning heat and pain to stop. But I was told that they can't do a skin transplant, and they wouldn't do it for something like rosacea anyway. But even if they could and wanted to, it would be futile in the end (or so these two doctors I brought it up to claimed), because apparently it are the blood vessels underneath our facial skin that are defect, and inflammation in the body attacking the facial skin on top, which would both, with time, ruin the newly transplanted skin too. The big feeding blood vessels are not replaced with a skin transplant and when your rosacea is a result of malfunctioning blood vessels, inflamed blood vessels which have a tendency to spread and unnaturally branch out, it would be a matter of time befoe the new skin would be affected too. I am still not sure if I buy that verdict btw. Because perhaps a skin transplant would at least make sure that there is no more nerve pain. But it is all theory, because there seems no way any specialist would do something as drastic as a skin transplant for a condition that is still seen as minor and cosmetic as rosacea. It's a silly what if question, nothing more.

Oh, and I've also been sunbathing again lately. My vitamin D levels are really low, every time I have them tested. And since vitamin D3 supplements make me flushed (maybe the dose is too high, maybe the synthetic D3 is not digested well by my body, who will say..), I resort to sunbathing! On advise of my internist doctor. I don't burn but tan quickly on my body skin and so I am told to sunbathe on sunny days for about 30 minutes a day, around noon (so that there is enough UVB radiation) and without sun screen... I built myself some lame sun bed, where I hide my face behind the door, but have full body sun exposure. Well, minus the bikini of course. I also put a fan on so that i don't have my face heat up. it's quite joyous to have a warm body for a change! I got a good tan already too. I think that in summer my rosacea is less bad than in winter and partly I think this is because the cold winter air makes my skin more red and dry, but also partly because I have more vitamin D in my system in summer.

March 24th 2017

There has been more traveling this month and my skin is pretty red all round, unfortunately. I've ended up in an obsessive cycle of fretting about toothpaste, and I am using the regular fluoride toothpaste again for some time now, and my skin is consistently 2 shades more red... I feel terrible about it all, I can't keep making my skin worse. I'm already cooling most of my day. I pretty much live behind a fan, attached to it as f it were an IV-machine, and only going out when it's cool outside. I have had complete nightmares with my teeth the past years. Always perfect teeth until I stopped using fluoride (and in all frankness, it also coincided with me happily increasing my sugar intake at the time). Well, you might all know the story by now, but had some cavities some years back and the filling material made me purple. I couldn't take it anymore after 3 weeks and had the fillings removed, then replaced by another filling, which did the same thing. Dentist with his hands in his hair, yes, I did look really worrisome indeed.. face swollen up entirely, skin the colour of a blueberry.. In the end the back molars are invisible even when I laugh out loud, due to my small mouth, so they could go. Get them out!!

That helped a lot, my skin eventually calmed down once the chemicals were out. (I add pictures from the dental problem period below this update). But it left me fairly petrified. Ever since I have extreme anxiety over the dentist and last November another alll the way in the back molar had a cavity too. Needed to be removed surgically in hospital too, which was a complete nightmare to convince these surgeons to not fill it normally. And once I managed to do that, it took them an hour of cutting and pulling and torture to finally get this super strong, all the way back in the mouth molar out (metal crams to get my mouth open wider, causing a tear in the mouth corner, brr). Then the top broke off and the root was stuck deep in the bone, and the surgeon was fresh out of med school, and struggling on for a full hour. Not that it was her fault by the way.So this is a Marathon-Man type of obsession with me now. Great, to add to the regular rosacea stress. SO I brush and I floss, preferably with a fluoride free toothpaste because it makes me less red, but I use a fluoride one in the evenings now, just to be on the safe(r) side. Then i bought fluoride rich bottled mountain water, to swiss in my mouth now and then (my antihistamines and mirtazapine give me dry mouth), and then on top, to top off the neurotics, I now and then rinse with betonite clay ("remineralize"). Not to be brushed with, because it is abbrasive and scrubs too much, and brushes off your enamel and gums otherwise. And I avoid sugar and I drink with a straw and I obsess about little dents and spots on my teeth. A day's chore. Life's a peach for me, currently :)

Luckily, otherwise I am not feeling overtly depressed. Or anxious. Although life with constant burning and painful skin and the bags of things to avoid aren't particularly uplifting. I'm keeping myself busy though, with work projects I luckily love, or writing or reading or movies or chats with friends. Walks too. Meet ups when I am not feeling too burned up. Life could be a lot better, but life could also be a lot worse.

Good versus bad skin periods the past few weeks:

Holland had political elections over a week ago. We had our own right wing populist in the works, called Geert Wilders. He needed to win the most seats in order to have any power. In the polls (yeh, those polls again..) he had a lead, but in the end the alterations our current PM had with Turkey gave our PM an excuse to show his muscles and act all PM-like and that made him gain some extra votes and seats in the end. So Wilders did have more votes and seats than he had 4 years ago. He won in a way, but then again, he lost. The thing is, nobody wants to rule with him and not just because he is anti immigration. More parties are these days, including our own chrrrristian CDA party, and some others, they all picked up on the Muslim/immigration negative waves that go through the country. But Wilders' party (PVV) did rule some 5 years ago with the VVD (the equivalent of the American Republican liberals I think, or the British Tories perhaps) and CDA (the christian conservatives), only for Wilders to walk out on the coalition within half a year or so. I forgot the details but they had to have new elections all over again in no time, because Wilders just walked out. So nobody wants to have him on board again. Not just because he has some right wing ideas. He is a ticking time bomb. And another sweet trait of him; he wants to cut down even more on people on the dole, crank the nazi regime up even more. I'm not on the dole, but I read that it is already a stasi regime now as it is, with dole people needing to ask permission for even a week of holiday. 

They now force people to take any job that is offered to them and make sure they keep that job. Or else they are cut off or cut down in welfare. They force people to travel up to THREE hours a day for a job, if they are offered one that is far away. They can force people to move to an entirely other part of the country if they are offered a job there. Anything you inherit or gain or possess has to be reported and you are cut in your welfare there too. They are allowed to barge into your house at any given time to investigate whatever they want. Get a bf or gf? Then they can pay for your living cost and you are cut. Dole people are forced to do shoveling or whatever it is they can find them to do as a payback for getting welfare money. I am all for people working, but then there must be suitable jobs on offer as well. Punishing those with no means to work, simply because they cannot work, I don't support. But maybe this is rooted more in the way Holland has been a welfare state for so long. My mother sat for the Labour party in local government for some time, we just grew up with these ideals and not just ideals; it also was reality in the 80's and 90's. I believe in the benefit of a welfare state, where those with the highest income pay relatively more taxes than those with very low income. And where the roads are well, education is good, hospitals are running, people are having affordable health care and there is a safety net when you cannot work for whatever reason. Luckily this is still the case over here. But since the 2008 crisis, a lot of safety nets have been removed here, by a more right wing cabinet in politics. Especially the elderly and the chronically ill paid a heavy prize. 

Despite the economy going a lot better by now than in 2008 (and the way budgets were tightened in the past 5 years surely played some role in this), welfare people are cut to 70% of minimum wage and they want to cut it back even further, while the middle classes and the rich are getting more money from now on and lesser taxes. How is that fair? Many poor people cannot afford to go to the doctor anymore, as the premiums for health care are around 130 euro at the least per month, with an own risk of close to 400 euro. I am through my own risk in the first two months of the year! That is almost 2000 euro a year. We used to have a state owned health care system. 50 euro a month, and you were fully covered for everything, from medication use to hospitalization to the dentist. It all went downhill once the Dutch state allowed corporations to take over, and when they privatized health care. The same thing happened with public transport, the post system, electricity, part of education and so on. Even hospitals are run by an army of managers now.  

I voted for the green left wing party Groen Links. I agree only partly with them however.. But the party that I want, doesn't exist. I want a socialist party that both wants to cut immigration down, limiting it to political refugees but not as much allowing economic refugees anymore, ánd who lets the poor share in the good economy and doesn't kick them when they are down, or forces them to have penalties for not working when there simply are no jobs for people too old, or too sick, or out of the working place for too long. Now they get fines, even when there is no work. While the rich are getting it better all the time. The whole division between the 1% and the rest has been growing steadily since the 1970's and I wished there was a better spreading out of the money, with much more of the wealth spread over the middle classes. Like it was the case back in the 1950's. But nowadays the choice is either between socialistic ideas about the poor, but also a leftist point on view on immigration, or a far right party who has a good grasp on immigration but wants to butcher the poor even more and throw all dole people on the street to suffer. 
Over here there have been problems with immigration and integration for a long time now. Some places are riddled with crime and poor integration, Gouda for instance. Places in Sweden look like the new caliphate by now. Documentary makers trying to film in Stockholm ' ghetto's'  are beaten up and choked these days. Charming. (I know those links are Daily Mail material, but there are plenty of other sources, from those newspapers and individuals who decide to speak out instead of wiping this stuff under the carpet). 

Anyway, during our elections, the international press was out in great force to see if we would start a string of right wing nationalism in europe with a 'Nexit'. Didn't happen and I am not surprised. Because the thing with the EU is that Holland relies on the EU. Its a very small country with a big economy that leans on trade and businesses a lot, and they reallllly benefit from all the EU trade deals etc. We're not big enough to pull a Nexit off, most people think. I'd love to get rid of Brussels bureaucracy maze, but the EU membership has brought Holland a lot of good, financially. Besides; the middle classes and upper class group is too big, and they have no personal interest in upheaval of the economic system, that comes with leaving the EU. I think the EU is a nice construct, but burdened by a huge immobile clog of diplomats and bureaucrats in Brussels, who aren't chosen democratically, and who make the whole enterprise quite slow and heavy and even corrupt. 

But that wasn't all that can be told about the election time. There also was a bit of a Turkish mess; a couple of days before the election here, there was an alteration between our current PM (Mark Rutte) with Turkey, and it gave our PM an excuse to show his muscles and act all PM-like and that made him gain some extra votes and seats in the end. More then the polls were showing, up until then, and his adequate actions seemed to have given some swinging voters a push towards his party. 
So, what happened here? We were basically having a mini Turkey riot here last week. Their minister wasn't allowed to land here, as I understand, because he wanted to campaign in Holland for Erdogans Turkish elections. The nerve haha, and that during Dutchie election times. Our PM (Mark Rutte) wouldn't have it! But in the end, it seemed a coordinated showmance bromance. It gave Rutte here a good 5 extra seats in the end (going by the polls at least), and Erdoğan needs a foreign enemy for his own elections. So that he can distract the attention from himself and create some unified enemy in the EU. Their campaign was not going well in Turkey, from what I heard, because there is noone left to attack. The kemalists are already defeated, more or less. But now PM Mark Rutte was the national enemy. Or more precisely, the State of Holland. And lets face it; with so many Turkish citizens, Holland is a bit like a 2nd Turkey anyway. Maybe 3rd, after Almanya (Zurmany). It caused riots in our streets, from Dutch Turks who were very upset with this decision. They attacked the police, made fires, demolished some things that stood in the way. The stuff one does when one is miffed. Haha, I even heard that some Turkish trolls were sending angry messages to François Hollande instead (Frances president). Just 2 countries further mate, no biggie!

Or they were writing poor English in the midst of their hate tantrum: 

So overall, Erdo needed this collission just as much as PM Rutte did. Evil tongues in newspaper columns even hissed that it was all done in agreement. Tsk tsk tsk... Especially after Erdoğans party lost 10 percent of their votes. I heard that he didn't let other parties form coalitions, and called for new elections in the most cunning way: He gave his own party the order and duty to form a coalition government, but they waited until the very last day with this. Then they declared that they couldn't. Then Erdoğan waited until the very last day and declared the need for another election I'm not making this up. Of course, many people died in between. They said: "To end this chaos, vote for us". So people did. Erdo in return said that the opposition failed. Which is why I did like this Eddy Izzard clip/history lesson. People don't necessarily care if you murder your own people. They mainly care if you kill people in the country next door. But autocrats...killing their own people? Oh well..

A journalist last week claimed that Erdoğan's party was preparing an advertisement in February, revolving a football match; Turkey vs. some Foreign country... In it, the referee is biased, and is consistently making poor decisions. Then suddenly a small girl (with headscarf of course) rushes to the pitch and gives a red card to the European referee... I don't think it is a coincidence that the one female minister he has in his entire cabinet, the one we declared ''persona non grata'' here, was the one pushed out in the European limelight. Seems that he managed to solidify his support in Turkey once more. But he is bad news of course. Apparently he had an alteration with Israel once. In fact, he ''fought'' with them for years. Left Davos because of Ariel Sharon. And did it help his career? I'm sure it did. A humanitarian aid ferry was sent to the Gaza Strip, although Israel said they wouldn't allow it to reach the shore. They insisted anyway, to which Israeli commandos assaulted, and 8 people died. Two things were significant; deputies of his party were destined to be on that ship, but decided to stay in Istanbul at last minute, and after a couple of days, Erdo shook hands with the Israeli army, over some multi million euro deal for the modernization of tanks.

And to make a link with Holland, here it was interesting that a couple of days before these incidents in holland happened, Petrol Ofisi, the biggest oil company of Turkey, was sold to the Dutchies for 1 billion 368 million Euros. Makes me wonder if the whole alteration last week between our PM and Turkeys minister was staged and fake. Given that it was a win win situation. Besides, the consul general of Holland was not in Ankara when all hell broke loose. Did somebody told him to take some days off? Luckily over here that fuss only lasted a couple of days. I bet the people in Turkey have been living like that for 15 years now. 

And a little side joke; this foreign minister we had beef with said "I don't know what type of tulip are you'' to Rutte. He clearly implied that he is an ''ass tulip'', which sounds mighty strange to us, but it's an insult in Turkish slang. Not that anyone here picked up on it at the time haha, But a very diplomatic joke on the European world stage indeed. Their English is excellent of course. After all, their most beloved sultan Mehmed II was a polyglot and knew Greek, Serbian, Persian, Arabic and Latin.

I also watched the tv series Fargo lately.  Together with a "rosacea friend", both on one side of the computer and world. Very nice. We went through season 1 and 2, and the overall concept was taken from the original 1996 movie Fargo (Coen Brothers). Quite good. Season 1 has Billy Bob Thornton in it and has a very cold and cool feel, it's good. Season 2 has a very different tone, very late 70's, very Tarantino cool, really worth your time if you care for that stuff. Especially with Kirsten Dunst is acting superbly in season 2. I never liked her much, but here she is awesome and I also want to learn the Farogese accent right away! I have no idea whether that kind of Germanic (?) accent is typical of North Dakotans. I guess it is American with Scandinavian/German influences. This 2nd season is set back in time compared to season 1, and focuses on the father of the main player in season 1, agent Molly Solverstone. In season 1 he is a retired diner owner, seemingly disillusioned by the police force. Here in season 2, we have a flash back and see him in the prime of his days, and we get an impression of what exactly happened with him at that time. Molly is still a little bairn here. The whole cinematography is warm and fairly cool I felt. There is an undercooled slapstick humor to it and tons of references to Coen movies. 

Kirsten Dunst (Peggy) accidentally hit and runs a gangster kid, who just murdered out a whole diner. She and her butcher partner Ed are like the Joneses in many ways and are faced with the dilemma what to do. Really good stuff this. Peggy proves a freak in all sorts of ways, but her husband is too
slow to process this. It is more of a classical gangster story than season 1, but with that typical Fargo undercooled humor and slow motion elements to it. There are rivaling gangster groups/families, competing for control of the north. One figure, a black guy named Milligan, is just as cool and eager of quoting as Samual L Jacksons character in Pulp Fiction. Here he isn't limiting himself to the Bible, but he quotes all sort of stuff, including the absurdist Jabberwocky poem from Alice in Wonderland, during some tense scene preceding a murder fest. I loved that absurd touch. It made that poem sound so ominous. And when he is held up by Molly's grandpa, played by a Donald Sutherland lookalike (Ted Danson), Milligan wiggles out of trouble with a magnificent smart story of a world in conflict.. and then identifies the (murder)scene as peaceful in comparison. So he can be let go haha.

One of Penny's excuses for most of the shit she had herself end up in, is that it is simple to have the right reaction to certain challenges when they are given to us in isolation. She says that we understand the nature of the test, and what the logic of the situation is, only when that logic is disembedded from the larger flow of experience. Or has a clear contour somehow. But in real life it is not like that. In real life, she said, we live like in a dream. At least she is. Instead of living in the museum of the past, she is always inebriated with her dream made of the gloss of magazines and the taste of hopes of self-improvement. She is almost annoying in her crazy antics. She seems mostly drunk with her desire to leave the little northern town and replace it for something grand (California in he dream), whereas her partner Ed, the butcher, has completely different goals in life. When someone asks him what's the point of everything, he says: "That's the American dream. Shop ownership, and three piggies under a blanket."

Peggy was lulled to sleep in life, she hoards magazines in her house to offer some peek on a way out. But now she is awakened. And when she is awakened she becomes a feral beast, a violent cat. She is sufferable still when she has that mystique of what is driving her, but once the mystique is gone and it becomes clear what is driving her, she becomes completely insufferable. She is in constant denial, distancing herself from any situation. She is serving us with beans - something we are biologically conditioned to be attracted to. But at the same time poking us with a knife for no reason. She attacks someone, and at the same time is referring to the Geneva Rights Convention. A favorite line at the end (when there is a trail of destruction left behind, and she is still talking about her own goals in life), is when the cop says, in disbelief: "People are dead, Peggy".. Perhaps another character, Dodd (one of the Gerhardt criminals) summed it up neatly: "Satan is a woman". In the series there is another character that seems drunk: Carl the lawyer. Only he is mainly drunk from alcohol. Carl is beyond hilarious btw and here he is asked to defend the butcher, and comes in roaring from alcohol. Part of his statement ("Out of the way, tool of the state!"/"Gulag magic tricks"):

There are countless themes running through this series. One of them is this almost western like good versus evil theme. With cops Lou and Hank both braving the crew of bad hombres, which are nearly sketchy, cartoonish and slapstick at times. Another theme is the corporatization of the Reagan days. (Reagan even makes a cameo). I liked how mafioso Milligan got rewarded for his bloodthirsty results, by giving him a broomstick sized office with a typewriter ("they're not just for secretaries anymore"), and the mentioning that money is now to be made in economics. I think that overall, the whole series reads like a metaphor for the Reagan times. Or as a parable for the Reagan 80s — the consolidation of businesses and human spirit. Mergers and takeovers are hard, bloody work. Regular people will pay the price, butcher shops will close. But the rewards, for a few anyway, will be too many to count. For the rest of us, including Mike Milligan, the "warm champagne of corporate praise" is nothing more than a mid-level desk job and a 401k. Milligans typewriter was a closing circle thing too; an electric typewriter salesman basically set all the events in motion in the first episode, when he asked a Gerhardt thug to go intimidate a judge so he could still get his loan to buy the new stock of electric typewriters.

This was me before the tooth troubles and this during:

I don't know why, but lately my skin seems constantly flushed and burned up :( Things seemed to go much with my skin better back in 2013, when I look back old pictures. I don't know what causes this poor rosacea. Maybe it all started to deteriorate once I started to use make-up, back in the end of 2014.. I have no proof for this, and only had it on for maybe 2 days a year. But I feel that in the past years, my rosacea has been pretty active and giving me constant burning and heat problems. I look less pale than some years ago too.. Especially later in the day and in the evening. OH and by the way; back in July last year I had hair thinning? Really losing clumps of hair and especially at the temples, my hair was really thin. I think it was the result of stress. Because it happened a few months after a very stressful period. Ever since I have done nothing different. No hair pills, no supplements, no different shampoo. And my hair is back to normal now. First picture was 8 months ago, 2nd is now:


Some of the foods I ate the past months

(all gluten and dairy free, low to no sugar, organic meat and vegetables)

March 2nd 2017

Long time not updated! There wasn't that very much to update on, in my defense. The dreary European gloomy months of January and February tend to be quite miserable. Rain, cold, grey. For many years now we had temperature records, and therefore the typical northern winters with blue sky and crispy air and snow and ice are replaced by this sloppy depressing weather.

My itchy cheek hives got worse after my last post, then disappeared, and by now, there are 4 small hives back on my cheeks. I think I get them from a combination of factors: exposure to cold air (like real winter cold air, not 16 degrees in spring or summer - thanks to airco). Plus my cat allergy... I shouldn't cuddle my cats so much, I know, and I should keep at least the living room and my own bedroom cat free. Bedroom is actually cat free, but the living room... less so. I hoover every day and ventilate, but these cat dander particles that can cause allergies to flare, get stuck to everything, including furniture and even the walls :( But I love them too much, and the hives mainly happen in winter (maybe because the cats are pretty much 24/7 outside if I give them the option during good weather in spring and summer...). Here my little Piotr is doing his favourite game lately (I didn't train him in any way! Cats shouldn't be forced to act like dogs.. this special fella just thought out the "fetch the mouse" game all by himself).

I had a very long travel day today, basically 15 hours in a train..  From south of France to the north of
Holland. The train did drive 300 km an hour half the time, but still took me such a long time, and more important; had me stuck like a sardine in a bloody hot, small space. It was really warm in there actually and they have no ventilators. Obviously, windows cannot be opened either at such speeds :) So I brought my SOS bag with me, with ice cubes, frozen gel packs and my tiny handheld fan. Being still self conscious, and having a dude sitting tightly next to me both parts of the trip, I tried to hide the fan. I watched quite a few The Walking Dead episodes in the train, and placed my laptop bag next to the laptop, and had the small hand held fan up behind the bag. I'm fairly sure people either saw or heard it, as it makes a bit of a growling sound, and me having the bag up awkwardly might have made it seem even more obvious, but the fan did help me. It was around 22 degrees Celsius in there, but I managed to arrive in Paris with only a moderate pink face. NO odd stares when I had to ask people stuff. That gave me some renewed confidence. Enough in fact to buy some forbidden foods; fresh croissant and pain au chocolate, hahaa. So good, so simple, so breadey. No big flare afterwards either.

My 'plague boils' at the height of their power:


I had to hang around at Gare du Nord for some time, as I didn't want to rush while having to change stations (which is a bit of a trip in Paris..), so I hung around the entrance, where cold air came in. I would have preferred to walk around the Parisian streets and have long stares at the handsome and well dressed people out there, but there was a persistent drizzle rain that blew in your face, whichever way you turned. Oh well.. I managed to make some pictures from behind the glass of train and bus, just to prove I was actually in Paris.. The part of the trip to Rotterdam went pretty much the same as part 1 of the trip; the train was too hot, another dude in fancy clothes sat next to me and we made great effort again to not squeeze an inch of leg surface against the others.  Like the first dude, this one fell asleep halfways through the journey and slumped
his legs well over the imaginary (but therefore not less real) seat boundary. I watched more Walking Dead, used the small hand fan and I didn't end up too red. Still far more red than normal looking people.. Some teenage girls giggled when I passed by to go to the bar in the train, and I'm sure more people have this problem, but when I know I look red (I can know nowadays, going by the level of skin burning I have; today it felt fairly painful, tight, hot and sore), I do make everything revolve around me me me. Including people giggling. Even when they don't actually look in my direction :) But apart from that I was in a good mood and zen in my own Walking Dead bubble. I have had trips where my face was so badly flushed, so painful, so f*cking hot, that it was almost unbearable to sit things out. In a small hot space, with smartly dressed people who notice everything that deviates from the polished norm. Boy, do I stand out then with my radioactive coloured face..

In the last part of the trip, something happened that gave me a good feeling, and made me wonder if I honestly wasn't red, or, perhaps, that some people really do not notice it as much as I think they do, or at the least do not care too much. I sat on the balcony of this regular Dutch train. No mandatory seats, and the balcony is more cool. I had a choice between one balcony part with one chair (yessssss), but, it was facing the trains loo (noooo). The other side was empty too but had 4 seats. Tricky, at rush hour you basically can be sure it will be taken by at least one other person. Which is what happened. A guy who reminded me of Gael Garcia Bernal in Mozart in the Jungle sat next to me, carrying a dangerous looking, black samurai case. There was place in the rest of the train. Why did he chose to sit next to me? And what was in that dangerous looking case he was holding?? Well, it turned out to be a wooden walking stick. I still didn't understand why he had to carry his walking stick around in a protective case. Until he started to play the stick. Ok, it was a flute of some sorts. Beautiful sound it made however, mostly because the guy played really entrancing Middle eastern sounding tunes. The sort you'd expect they use to get a cobra under your spell. Before I could wonder who the cobra was here, he stopped again. I pretended to be reading my book, but then kicked myself up the behind, and showed some interest. After all, I was the only spectator here. It was technically speaking a private concert for me. I felt kind of flattered actually, even though he didn't even look at me the whole time.

So, some people are really bubbly and outgoing. I used to be a bit like that, throughout my childhood and adolescence. Not über bubbly, not hyper happy without a clear reason, but spontaneous and direct enough, when the situation called for it. I never overshared really, and probably was a bit reserved as well. But nowhere near as restrained as I am since rosacea hit me. Now I prefer to be left in an invisible cocoon, with earphones on and ideally black sunglasses too, and a big hat in which I disappear. I have gotten so very comfortable in there, that the thought of just telling this guy that I liked that bit of music, made me worry he would shout back in harsh tones: "Whoa!! That was a strange thing to say to me?!". I would definitely go more red in the face then.. Apologize confused: "No, really, I Am sane. Really!" Trying to rapidly climb back to solid ground. Would a potential combination of redness and embarrassment, would that be worth the entire undertaking? And worse; I would thén also feel uncomfortable and self conscious for the rest of the trip. And packing up my bags and demonstratively changing seats would just seem too High School bitchy, even for me.. I have these 'what ifs' going on in my mind fairly often, also when it comes to telling obnoxious people to shut the beep up when they shout through their mobile phones in a silent train part. Or give some kick ass reprimand to bullying teenage girls. I decide not to nowadays, because you can bet it will turn me red. And then you can bet even harder on the type of shit I will have hurled back at me. I didn't get laughed at over my looks back in the days. So I spoke out. Now, it would feel like the biggest humiliation to be openly mocked over my scarlet red blob of a face. Probably - to explain this to women without rosacea - comparable in scale to telling any sized woman that she is FAT! The shock and horror on their faces.... even if they are slim. It is just a low blow. Well, these days I'm rather called FAT than an overripe tomato..

Anyway, I got over myself and treadled on what I thought was neutral territory; general enough to be done with it with a single lined response. But acknowledging the fact he just played some pretty good music all the same. I asked if that tune was Middle eastern perhaps? That it sounded really nice. The guy was all friendliness and warm facial expressions and said it was indeed Middle Eastern, specified the geographical region a bit further and then spoke for an hour about his ME music, Turkish politics and the Santiago walking trail. Luckily I know a bit about all those topics, but I was genuinely surprised that he kept talking and didn't end my curiosity in an awkward way. Shows me again that I don't look a monster necessarily, and that a kind word and some interest shown might actually get you some interesting responses in return. Nice actually. And so very simple, when you think about it.

In Paris, I think this was Place de la République:


January 18th 2017

Side topic, but I feel persuasive about this one: I don't use commercial deodorant. I don't sweat much and prefer to keep hygiene good with a wash here and there, or a natural alum crystal deodorant. There are also recipes to make your own, usinh shea butter, coconut oil and baking soda. Some add lavender or something else that has a nice smell to it as well. I worry that antiperspirants cause breast cancer. Here is some more on it. And more. Please be careful with all the parabens, aluminium, chemical perfumes and plastics you spray onto your armpits and the area so close to your lymph nodes and breast tissue.. They can be found back in (cancerous) breast tissue after inspection. They don't belong in our body and god knows what bad they can cause there. This article in Time Magazine tells me I am not completely bonkers for doing this:

"Research has detected parabens—a category of chemical that acts as a preservative in some underarm and personal care products—in women’s breast tissue, though how those parabens got there and what happens when they are in breast tissue is unknown. In Darbre's experiments, combining different parabens with human cells creates activity that may contribute to the development of cancer. 

Harvey has looked into the ways cosmetics interact with your body. He says wiping these chemicals under your arms and on the sides of your chest or breasts “could provide a route of almost direct exposure to underlying tissue containing estrogen receptors.” Both parabens and aluminum are “estrogenic” chemicals—meaning they interact with your body’s hormones or cells in ways similar to estrogen. That's concerning, because excess estrogen plays a role in promoting the growth of cancer cells, according to the National Cancer Institute. While many experts think cosmetic chemicals like parabens have only "weak" estrogenic activity, Harvey doesn't agree. He says, "It is often quoted that parabens are thousands of times less potent than estrogen in terms of their estrogenicity. This can be misleading and ignores actual exposures."

Harvey says his own calculations suggest these cosmetic chemicals may "significantly add oestrogenic burdens." Because of that, he says he questions the wisdom of including any chemical with known hormonal activity in your personal care regimen. But until he and other researchers are able to explain—and demonstrate—the ways these chemicals cause health problems, no regulatory changes are likely. That’s because unless a chemical is proven harmful, regulators allow you to eat it, smoke it, brush with it or slather it on your body. Finding that proof of harm is a difficult, costly and time-consuming proposition. Darbre says researchers can’t simply mix some human cells and some chemicals in a test tube and watch for cancer to pop up. So where does that leave deodorant and antiperspirant users? Largely in in the dark, Darbre says. “People want a simple fix,” she says. “Unfortunately it is not simple.”

Until more is known, consumers are in a bind. “Avoiding certain publicized chemicals is only the tip of the iceberg,” she says. Darbre says she switched to a twice-daily regimen of underarm cleaning with soap and water. (“No one has yet complained!” she jokes.) Frequent pit scrubbing may seem unnecessarily laborious—or just plain weird. But if you're concerned about the chemicals you rub on your body, regular bathing might seem like an attractive alternative.


January 21st 2017

Ugh, I'm struggling. It's one of those torturous winters again. It might not look like much on picture, but I have little hives (seemingly) all over my cheeks and they cause me two problems:

1. They itch
2. They make the skin under and around it very hot.

I literally feel the raised areas burn when I put my flat hand on them, even when the rest of my cheeks can be cool to the touch. This in turn stirs up my overall flushing and burning. My cheeks just feel tight, itchy, hot and burning. I'm having trouble all the time with keeping my skin pain and flush free lately. The diclofenac helps a bit, but only a bit, and some days it seems to help nothing at all. I am a lot more red and a lot more flushed and burned up now than in the fall. This just reduces my days and current life into trying to get the burning and flushing down. My skin feel like it's had a bad sun burn; very sore, tight and hot. I'm just sick of it to be honest. Day in day out, I even dream about it at night, as I can't control flushing nowadays at night, something that is much less of a problem when I don't have a bad flaring period, or when the temperatures are a bit less cold outside. I am miffed because I try to do everything right; not have it too cold or warm indoors, keep humidity up but not too much that it causes flushing, avoid the cold wind outside, use my uvb lamp to not have a complete zero level of vitamin D in my system. It just isn't working right now.

What makes me worried is that these strange hives only started to bother me in the winter of 2010 I think it was. I thought at the time that it was a side effect of plaquenil, an antimalarial I was trying out to cut down on my skin inflammation. I discussed it with my derm, I was convinced they were allergy hives from the plaquenil use. He already said he found that unlikely, but I was convinced enough of it to drop the plaquenil (and my eyes started to get gritty too, definitely from the plaquenil). But every winter since they came back. I am sure now it is related to cold weather. Either some allergy, but since I only get these welts on my cheeks, I suspect it is a local problem; that my facial skin just doesn't function well and has some lymph drainage issue perhaps? If it was a strict cold weather allergy, wouldn't I also get these eruptions on my hands, neck etc? It is getting me down nevertheless, because cold air used to be my 'friend'. It used to be a relief to have cold wind on my face. Now I get burning itching welts from them :( It just feels like I get more and more restrictions, when the list of triggers is already so darn long to start with!

I'll discuss it with my doctor next time, but right now I don't even want to sit in a waiting room. I'm too sore and flushy. I cancel pretty much anything, that isn't strictly necessary.
Then there is my ongoing worry (obsession by now) with my teeth. I don't want anything new happening, in terms of cavities, as the fillings they tried on me some years ago all made my rosacea unbearable. I need to keep my teeth in impeccable state and that includes fluoride toothpaste, according to my dentist and surgeon. But I get the most crazy flushing and deep redness when I use a fluoride toothpaste, even an organic one with no other irritating ingredients, like spearmint, sodium lauryl sulfate, propylene glycol, cocamidopropyl betaine, sodium benzoate and benzoic acid. Below I show some pictures of the one I use and the list of ingredients. The only thing I can think of that would give me such a crazy response (I uploaded pictures before, earlier, of a mega flushed burning face, every time I used it).

So I received a nice message on the Rosacea Forum from someone who read this blog and this person came with a great suggestion; a toothpaste called Tooth Builder. I bought it, it has no fluoride but it does have ingredients that helps to limit bacteria and plaque and such. Very mild, and I use it now and I love it. It doesn't give me a skin flare, it has a nice taste, it's foamy but without having the common detergents that are responsible for the foaming properties of toothpaste and that can cause skin problems, for instance the Sodium lauryl sulfate, a common irritant. Below some pictures of it:

I like it, but I am worried about its lack of actual remineralization power, like fluoride has. Perhaps the calcium they added helps a bit, but as far as I know only fluoride actually remineralizes teeth. There is also a lot of bad press on fluoride though, not least because it's a toxic waste product, and it's also linked to neurological and IQ issues, or so I read here and there. My main issue with it, however, is not a long term possible problem, but the actual instant flushing it gives me. Bad flushing :( I wished it was different. I looked online if there is a link between fluoride and rosacea. Dr. Richard Gallo, chair of the dermatology department at the University of California at San Diego and a doctor who has done previous research on rosacea, states that: "toothpaste can cause irritation or allergic reactions in people with certain sensitivities, resulting in rashy bumps around the mouth or, perhaps, rosacea, a chronic condition of redness and skin sores that might be confused with traditional acne".

"One of the instructions we give to patients with rosacea is to think about the toothpaste you're using," Gallo said. "People can be allergic to just about anything, but toothpaste's mint and cinnamon flavorings, which can include the allergens balsam of Peru, cinnamic aldehyde and peppermint and spearmint flavors, are major culprits in skin reactions". Trouble is, 95 percent of 153 toothpastes evaluated in a study did not list the specific flavoring ingredients, so people wouldn't know to avoid them, researchers wrote in a study published in September in the Journal of Clinical and Aesthetic Dermatology. And it's not easy to find toothpaste without any flavoring.
But sometimes a skin flare-up has nothing to do with an allergy and is instead irritation. Some dermatologists have suggested that fluoride is an irritant causing perioral dermatitis, a rash of tiny red bumps around the mouth that is usually brought on by topical steroids. But few studies have proved the link, and the claims remain "unsubstantiated," Gallo said.

The article comes with a final advise: "If you worry your toothpaste may be responsible for your skin reactions, try switching to Tom's of Maine natural toothpastes, which have all ingredients listed and explained at tomsofmaine.com. Some are made without sodium lauryl sulfate or fluoride." I never looked into Tom's of Maine natural toothpaste, but I did find another toothpaste that has no fluoride, nor sodium lauryl sulfate. It's called Theodent, and uses a raw material that is also found in raw cacao in its toothpastes. And better, it claims to be as effective or in fact more effective than fluoride when it comes to remineralizing and strengthening tooth enamel. I only read a limited amount of studies, and with small scale studies you really never know for sure whether or not the main company has a stake in the methods and outcome, but this pubmed article states that the active ingredient of Theodent, theobromine, is effective at hardening the surface hardness of teeth. 

In an in-vitro study, twenty-four freshly extracted human third molars were collected for the experiments. "After baseline microhardness measurements, they were incubated either in 100 or 200 mg/l theobromine for 5 min. The control group was kept in distilled water." After a demineralization and remineralization process, the surface of the enamel of the molars was checked on their microhardness and researchers found a "consistent and remarkable protection of the enamel surface was found with the application of theobromine."

This research also confirmed the enamel strengthening effect of theobromine, and that it was stronger in that respect than the brands Sensodyne or Colgate. An abstract from the article:
"A toothpaste that contains a natural chocolate extract was more capable of remineralizing exposed dentin, which could reduce dental hypersensitivity, than fluoride-based toothpastes, including Sensodyne NuPro (GlaxoSmithKline), according to results from a randomized double-blind clinical.
The study evaluated the enamel-strengthening potential of Theodent (Theodent) toothpaste containing the patented compound Rennou (Theodent). The active ingredient of Rennou is theobromine, a compound that is prominent in chocolate; it also contains calcium and phosphate. Thoedent does not contain fluoride."

I bought all three types of Theodent toothpaste over a space of a couple of months; the children's version is mild and has no spearmint (I prefer it), but it has a lower percentage of theobromine than the 300 white series of Theodent. Which is really expensive btw.. Therefore I bought the kids version and the normal adult version first, both are around 10 dollars. I didn't flush from both (and preferred the kids version because it actually tastes like chocolate :). But because I'm so petrified about keeping my teeth tip top now, I also bought the high strength version (I don't dare to mention the price..). I honestly don't know if this brand is as effective as fluoride is said to be when it comes to preventing dental carries. It feels like a risk to me, but then again, I just can't deal with severe flushing due to fluoride tooth paste daily. Others might be fine with it, I don't want to scaremonger anyone, but I am in serious distress over the type of skin reactions I get from fluoride. I also realize that my antihistamines and other medications might cause dry mouth, and that dry mouth is not very beneficial for healthy teeth. So I make sure I drink enough water and keep salive in my mouth, so to speak. I also try to eat like the cavemen did, who I found out upon some researching had surprising good teeth. Sugar and simple carbohydrates are a pest for dental hygiene I read and well... those two also seem to worsen my skin inflammation, so that's a double motivation to stick to more vegetables and protein. 

But regardless of toothpaste worries, overall I'm just miserable with my painful skin at the moment, and fairly bored with the amount of pampering and coddling my skin takes. And even then it sucks most of the time. I feel so much more upbeat, energetic and outgoing when my skin isn't burning so bad and just behaves. One thing I'm glad of however, is that I don't have itchy eczema. Maybe pain and burning is a tad bit easier to handle than burning and itching inflamed skin.. Fingers crossed I won't get that, ever. These itching hives are enough already. On top, my lungs are playing up again too. I suspect it's just the cold air and the mild flu I'm having. A friend with rosacea has a ton of symptoms that mimic mine, including inflamed knees, rosacea, seb derm, tiredness and much more and she was recently diagnosed with mixed connective tissue disease. Doctors expect lupus in her case. I don't try to be a hypochondriac here, but my ANA auto-antibodies have gone up the past decade, from zero to 1:40 and 6 years ago 1:80. It has to do with the amount of autoantibodies they find in the blood, which are an indication for auto immune disease. I'll see if my doctor can have me tested again, hopefully the number is similar, but if it went up again, who knows, an immunologist might take all my symptoms serious? For lupus, doctors usually look at numbers above 80:1 (actually, they look for quite a bit higher a number), because a small percentage of healthy population also has low positive ANA blood results, despite having no auto-immune disease. But I do have auto immune problems, I have all sorts of inflammatory blood markers and auto immunity blood results. Not dramatically bad, but just mildly positive. Which is annoying, as I have inflamed sore knees for decades already now, despite being in my 30s only, am generally tired, and been diagnosed with a host of inflammatory conditions like colitis, Raynaud's disease and allergies. Now my lungs are having low grade inflammation for over a year already and my skin is just one red inflamed mess often. I just hope there is some over arching explanation for all these symptoms. Maybe another blood test can give a better diagnosis, but I'm not really getting my hopes up. 

Someone asked me on the Rosacea Forum about the exact effect my anti flushing medication has on my skin: 
"I read some of your other posts where you mentioned that you had a unsuccessful (bad) ipl experience. Did you develop constant background redness before this ipl, or only after this ipl? When you mentioned that you use medications to keep your redness and flushing at bay, do you mean that your background redness is gone / you have your pale skin back when you are on medications?.

[Also] I still believe your condition was caused by steroid. the doctors' so-called "predisposition to rosacea" actually does not make any sense. Think about this logically: if 100 people get affected by same amount of radiation, then 20 people get cancer, but the rest 80 don't. for those 20 cancer people, no doctor will say "Hey, you get cancer because you are predisposed to cancer!". Instead, it is naturally accepted as that radiation caused those 20 people cancer! In terms of why the other 80 people who don't get cancer, doctors will say "they are healthier, stronger resistance to radiation!" one thing doctor won't say is "those 80 people are not predisposed to cancer". For those 80 people, it will take a lot more radiation to cause cancer in them. that is the only difference. Same logic applies to steroid induced rosacea. Some people get affected by even 1 time application of topical steroid, while some people display symptoms only after many years of application. It only means some people have strong blood vessels resistant to steroid while some people have weak vessels to steroid."

I replied:
"What the medication does for me, is to not have me flushed and beet red 24/7 anymore. I do get very red and flushed still, especially now in winter or in the heat of summer. But I can have lighter skin if not flushed and when I keep cool too now. I'm subtype 1 with a lot of crazy flushing, the redness comes with the flushing. It's not permanent in a way, as when I am all cooled up, I can look fairly pale. I just flush at the drop of a hat and go from scale 2 to 8 or 9, if you'd want to scale such a thing. Much more red now than before the IPL and on a much bigger skin area (everywhere that dr zapped me) than before. Yeh I had an unhappy IPL experience. I did have redness and flushing before the IPL. But mainly on my upper cheeks. On the apples of the cheeks so to speak. Not full face. And I could have pale skin too when the flush calmed down again. So no 24/7 constant redness. I didn't need a fan all the time either back then. But after that IPL I flushed and went (still go) red all over my cheeks, the entire cheek area, and chin and ears too. And a much deeper shade of red also, compared to before. So there has since been redness and flushing where there never used to be any, and I flush about 20 times more, like; a lot more and severe ever since. The year right after that IPL was the worst. Then I was given anti flushing medication. 

You might be right. I never fully understood what happened there and how I could go from no flushing to getting a flushed face most evenings or from a host of triggers.It might be indeed what you just wrote, that these steroids get to some people sooner than to others. The ****ty thing is; you can't turn it back, you can't 'undo' the few days of steroid cream use. I looked up teenage pictures lately to look for signs of early rosacea there and the only thing I found was a drunk night on holiday where I had some mild redness on the upper cheeks from the alcohol. Nothing I could notice unless I looked in a mirror, no obvious flush heat and burning. That all started right after the steroid use."

The Forum Member wrote in response:  "I am always "amazed" at how little responsibility those doctors are held accountable! People who drive cars and accidentally hit and hurt someone are always held accountable; then why not those f-cking doctors who prescribe steroid like napkin dispenser and those f-cking doctors who zap people with lasers without carefully consider the patients full history and skin conditions but just want to "collect" more patients/laser sessions and make money!!! Those doctors' crimes are way more severe than drivers who hurt people during accidents!!! How long did you wait between the steroid (hydrocortisone) cream and that ipl? Do you mind of sharing the reason that you chose ipl instead of some pdl (eg vbeam, ktp, yag) initially? Have you tried any pdl after that ipl then?" 

I replied: "Yeh it made me very angry and upset indeed, and I'm not alone. I know several people who had their skin worsened quite significantly by doctors and their IPL/laser machines. It makes most fuming that the doctors just say that their machines cannot be held responsible and that it must be rosacea's natural progression. They do walk off and forget about you, while you are left with a life in tatters. And worst of all; they had you sign a contract before it all started, so you have not a leg to stand on, if you want to stay within the legal side of the law. The steroid cream was used in 1999, the IPL in 2005. In between I first tried all sorts of natural treatment options, acupuncturists, herbalists, basic rosacea treatments like antibiotics and creams. Nothing worked. I was already on this forum back then and just rode the IPL hype that was going on already at the time. I got this doctors name from the forum too. I visited him in England a separate time, to ask for test patches but he dismissed that, said it wasn't necessary. I have regretted this bitterly. I understood at the time that IPL was 'best' for flushing and base redness. I don't have visible blood vessels, which was thought to be the thing to use laser for. Later those insights seem to have changed, I think the consensus here is now that for flushing the v-beam or some other ype of laser is actually more effective. I had test patches with pdl laser after 2005, first with my local dermatologist, then the late Dr. Crouch helped me a lot, doing all sorts of test patches for free; pdl, yag, also Lumenis One IPL. None of the lasers gave me any pale skin response. The Lumenis One did with certain triple layer settings, but when we did a full face treatment in 2006, it gave me a month long inflammation and redness all over my face. Took NSAID medication to calm things down and in the end, that IPL didn't help me but didn't make me worse either, so no drama that time, luckily. Crouch thought I am not a good candidate for laser nor IPL, as my skin is too reactive and sensitive and I have some light sensitivities too. Then in 2011 and 2012 I had part of my lower cheek test patched with v-beam perfecta, just to be sure that one could help me (Crouch didn't have that type of laser) but it showed no effect whatsoever, and I didn't dare to do a full face treatment as a result. That's the score. I am too afraid I'll make matters worse with either laser or IPL as it stands now."

Ok, have to add something upbeat too. This made me chuckle last week: week long warnings about an upcoming 'snow storm' in London are met with a flurry of tweets mocking meltdown in the capital:


There's been beautiful winter conditions in Holland too, only we don't fret about snow, but more about ICE.... Every winter there is talk of a nature ice skate tournament in Holland, in the north, and you won't believe the level of excitement this evokes in people. It's even a main news topic on tele. Some kids can skate before they walk. They are talking about the chances of an Elfstedentocht, like every year. A 200 km ice skate tour, on natural ice, across the province of Frysland. A mythical tour, because we haven't had one for the past twenty years. It was simply too warm all those winters after 1997 to organize an Elfstedentocht. Nevertheless the ice masters gather every winter in the hope of preparations for one. The best one to date was also the coldest one, the Elfstedentocht from 1963. In fact, that year they had the coldest winter in Dutch history (or as long as temperatures have been measured). This is the absolute heart of Dutchness:

Minus 21 degrees it was at the start. People still talk about this race. It was epic, people were admitted to hospital halfways with frozen eyeballs (for real). It's called The Hell from '63. It comes close to Argentina '74 and Germany '78 (both touchy topics and football/soccer related). People were dragged off the ice, completely dazed and lost, farmers found ice skaters kilometers off track, totally astray. Darkness, ice, wind. Frozen toes, fingers, noses, you name it. The wind was hard and made it feel Siberian. There were cuts and tears in the ice, it wasn't sweet sailing. 200 kilometers in total and the winner, Reinier Paping, did it in 11 hours.

I heard back an 80s song the other day, The Wind of Change on the radio. From the Scorpions. Might have been early 90s and I still have no clue what he sings in the first 2 lines haha: "I follow damosqua, and down to gonki paw"?? Either way, I wonder now if people really wanted the wind of change, if they knew back then what they were in for. I wouldn't, it could have stayed the 80's for ever if it were up to me. A Flemish psychiatrist said in an interview that he sees problems with the generation of today. That young people in his practice can look at him with an empty, non understanding stare when he asks them how they are doing. This is a culture of images, young people are used at visuals, and many cannot even find the sufficient words to describe their own feelings anymore, he states. They rather resort to emoticons. Many can mainly like things, and don't have the vocabulary to describe it when they don't feel good. Unhappiness is a massive taboo in today's world of Generation Z and beyond. It's all about personal happiness nowadays, but he pleads for a bit more humbleness in fact.

I notice this too of course. Life is flashy and fast for the friends around me. Jobs, young family life. But that is not enough. They need to be spiders in a big web, and also be social in the weekends, keep up large social groups of friends and family, go out, look trim and young, travel, be great spouses or partners of course. And that is wonderful, but there seems very little space for when it all doesn't go fantastic. We see the happy times magnified on social media, but rarely the struggles. It might be part of our image culture of today, one where we can control our own image with snap chat filters and one sided personal updates. But when you live on the periphery of life in a way, like I feel I do, then it can be demoralizing to feel there is not much I can chime in with. There isn't much space for being sick and ailing and unable to keep up with the fast life. Or so it feels sometimes. I have a couple of friends in my same age group, who all suffer from chronic illnesses, and they seem to feel more or less the same about this. It's almost a bubble we live in; even when we meet up with our busy and successful friends from a past life, we never really fit in seamlessly anymore. We are in a lower gear, we have to live a more quiet and restricted life. Of course there are always loved ones who understand that, but I do wonder sometimes if the pace of life is getting faster and flashier nowadays than it might have been some decades ago. In general I mean. 

So anyway, this psychiatrist states that he feels that we're at a border of the liberal consumerist system. People seem obsessively occupied and focused with being happy, he says. And not just regular happiness, but extremely happiness. Improbably high levels of happiness. It's never enough. Abnormal obsession with becoming happy. As if that has become the main goal of life. Aristotle already thought about this btw. But he lived in a different society. 
It really isn't, but our consumer society is trying to sell it to us this way. And by consumerist message, we can do all sorts of things to achieve this, but usually we have to buy stuff for it, like wellness weekends and self help books and courses, and we can especially purchase a lot of products for this. Flashy cars or expensive clothes are sold as the pinnacle of success in the west, something we deserve if we work hard. Something we are entitled to. Happiness is connected to big mansions. In reality, there is no significant simple correlation between money alone and happiness, with exception of dire poverty and extreme richness, which both make more unhappy according to statistics. But otherwise, money alone doesn't statistically make people more happy on the long term. But those who are successful and at the forefront of society, those who look sunburnt and have designer glasses and long legged blondes with them, they say: "See, I did it all myself. My happiness is my merit". 

Maybe it has a bit too do with the secularization of society. No more afterlife paradise means that we have abolished the promise of afterlife happiness. Now most think there is nothing after death. Or maybe there is something after death, but the tendency is to make sure that we have sufficient happiness here and now, just in case. And we look for happiness more in kicks and in exceptional stuff than we did before according to the doc. Always faster and better. People flock to the big cities, thinking it's there that they must find happiness. Not in the ordinary, always looking for it in the exceptional. That is tiring for our neurological system. Just doing nothing is getting increasingly more difficult for youngsters. Just try it; have a bunch of teenagers sit in a room for a day without the right to check their phones. Or maybe for a few hours even. Tough for many. There seems to be a constant addiction to impulses, pings, and kicks. And life can't be like that all the time. Peeks come with descents. Highs and lows and such. But many young people seem unable to deal with that. Life must be one long stream of events and highs. 

On top we have a grabbing culture, fueled by greed, who isn't focusing primarily on developing our own personal talents. Success in today's culture is often about grabbing as many bonuses as possible and pushing others out of my way. Doc sees a risk in this and fears that our society is heading in a direction where attachment becomes a problem. Where people no longer flourish in a predictable environment, where they can safely make mistakes, experiment and be loved unconditionally. Because for more and more people, their identity is linked to the image they create of themselves. The way they like to be seen and perceived. Your glass frame fashion is your identity, your fashionable clothes; that what the outside shows. And when someones identity shifts, because of illness for instance or economical misfortune (not to mention the inevitable losses you'll suffer along the way, or the ageing), more people now than before seem to lose part of their identity. Whereas your identity should be rooted, and be steadfast. Not so easily blown to pieces when some unhappiness seeps in. Those people can become literally sick from a bit of unhappiness. 

Happiness in our society is seen as our own earning, but unhappiness is seen as a psychological condition. Depression, personality disorders, all sorts of diagnoses that people seek because they cannot deal with the fact that they cannot be unlimitedly happy. They want a pill, to feel good again, so they can return to the hectic life out there of the successful and the happy, as if nothing is the matter. Keeping that illusion of happiness up. And pills do work, a bit. Making the people who take these pills think they are no patients. People nowadays are diagnosed when they show even the slightest deviation from the norm. With all types of abbreviations. ADD, ADHD, lots of D's in it usually. 

Maybe people should stop this obsession with happiness as the goal of life. Perhaps it's better and more calming to aim to live a good life. As in; being a good person, doing some good in the world, in whatever way. That's why I always bitch about social media. Not because I am against it an sich, but because the social media I do use make it obvious that people often filter out all the regular things, all the sad things, the things that go wrong, and only highlight their life's highlights, in an ongoing stream of little lights, and it helps create the crazy world of today. It's a big part of the hype and the craze. And maybe the world sometimes needs a slower pace. Time to walk a bit, think a bit. Time, not always as an economic factor. It's easy talking for me probably, as I am more or less forced to live that way now. I can go out and about all the time, but being bright red and in burning pain makes it very hard to enjoy much of that. I am best of when I keep calm when my skin plays up, and make the best of my day when my skin behaves. It's not easy though. Especially not when you had all this from your late teens on. I do feel left out at times, like I am existing instead of really living and experiencing a whole lot. But it is what it is... Some people don't experience anything at all. My sister died over a decade ago, I do think of people worse off, when I get in one of these wallowing self pitying moods. It helps in some ways. And it also helps me to refocus and realize that life isn't about being happy all the time, for most people. Feeling sad sometimes is normal, no matter what social media makes you believe; it's part of life or a consequence of someones situation sometimes, not necessarily a psychiatric disorder. Happiness has probably more to do with being born at the right place, being loved by your family and friends, having the right financial opportunities to study and to meet the right people. With good or bad luck, in fact. 

This also usually cheers me up, in the CATegory lame catness:

January 16th 2017

I re-started with an old medication, that I used to take for years, between 2007-2010; diclofenac. It's a non steroidal anti inflammatory (NSAID), and I feel it is dimming the redness a bit. It's not helping me with flushing, but I feel that while taking it, the background redness is not as deep. I have been taking 100
mg a day for the past three days and I feel my overall redness and skin inflammation is a bit less now. The pictures I show here are taken in the morning, after waking up, so I am always a bit less red then, and gradually during the day the redness increases for me. So this was my absolute palest moment of the day. nevertheless, I woke up red the weeks and months prior.. The downside of this medication is that you need to be really careful with your stomach. It's quite harsh on the stomach lining. I take my dose with a proper main meal, never on an empty stomach, or it feels like it burns an ulcer right away. It won't right away of course, the pills have a protective coating, but they are linked to ulcers after long(er) term use, so you need to be careful with this one.

It's still a lot more safe to try for your rosacea than resorting to steroids, either topical (absolutely not wise to use any steroid cream when you have rosacea, or a tendency to blush and flare, it can really make things a lot worse), or systematic; even taking prednisone orally is a risk when you have rosacea, and it can trigger rosacea too, in those with a predisposition for rosacea. But not necessarily. Some people with rosacea take steroids short term and it doesn't affect their rosacea. And in general, many people take steroids for all sorts of health problems and never develop skin problems from it. But people with pale skin, a tendency to sunburn and blush, do have a higher risk to develop a flushing or rosacea skin problem, after using corticosteroids. This risk is unfortunately not something that dermatologists and GP's are always aware of.

ephemerality wrote about this on The Rosacea Forum:
"Steroid induced rosacea does not requires long term usage of steroid. for some people, even 1 time application can do all the damage. don't believe the standard BS thrown out there by those "medical professionals". everyone's body is different;everyone's blood vessel flexibility/resilience/stability is different. maybe, it is true, for majority people, it takes months of steroid to develop rosacea red face; and there are people who never develop red face no matter how long they keep using steroid. however, for a small number of people, the full steroid damage only requires very short times (days, not even weeks). 

There is no possibility to persuade those medical professionals to admit/believe the severe danger from steroid. biggest tools (pretty much the only tools) western medecines have are "antibiotic" and "steroid". by playing with those 2 things, pharma comps and docs have been able to make tons of shxt loads of money. especially those dermatologies, without steroid cream, half of them would show up with dumbface and lose job right there, because they really have and know nothing else to offer patients. It is all about money! 1 unlimited supply in the world for derms (and docs and pharma comps) are people. they can keep making money, have their "respectful careers", and pile up assets for their children, as long as general population keep believing their fooling with the notion that "short-term steroid use does not cause problem" and "steroid usage under direction of your doctors is safe". What consequence is there to them when they ruin our faces!!! they will just get new patients and keep doing the same thing, and anyway, some people will be fine, and some will be ruined!"

I agree with this post-writer. In 1999 I only used a hydrocortisone cream for around 3 or 4 days in the area around my mouth and nose, a bit on a cheek, and developed rosacea, flushing, redness and burning seemingly overnight from it. It was ridiculous really. The problem is that for some people with rosacea, doctors do prescribe short term use of steroids (either something like prednisone, or a cortisone cream even, in an attempt to bring inflammation down) and some do fine on it, and it doesn't hurt their rosacea. But for some others, it does make things much worse. You just don't know beforehand if you'll be fine with it, or if you are one of the unlucky few who have their rosacea worsened by it. My dermatologist always says; it's Russian roulette to use any steroid, if you are a heavy flusher. I'd not take the risk. He warns me against any type of steroid use, including steroid nose spray and eye drops.

The worst part is that the steroid use is often not even strictly necessary.. I had some mild eczema at the time, and it really didn't require a steroid cream, but I never had skin problems prior and never thought a short period of use could pose such risks. I didn't even know of the risk. I feel that doctors, both dermatologists and GP's, need to be aware of the fact that steroids can trigger rosacea in those with a higher risk for it, like a tendency to blush, to sunburn and people with pale skin that easily goes red. It sometimes really is thrown at patients as an easy fix for all. It also rarely cures you from anything, as steroids merely suppress symptoms, and topical steroids not only thin the skin in the long run, but they also make the skin addicted to some degree to this cream (weaning off gives often rebound symptoms). So just be careful with steroids, if you have rosacea.

I also have been eating healthy and been using my UVB narrow lamp, to (almost) naturally and slowly increase my vitamin D levels now that it's winter here. Read more about it here.

January 12th 2017

Happy new year and I hope that everybody reading this had nice holidays and enjoyed the festive days with minimal skin discomfort! I have a horror time with my rosacea unfortunately. It's been basically burning since the start of December, when the weather turned cold and the central heating went on. In summer, my skin can be pale when it's not flushed over something. Now I'm a constant red blob. My whole face feels sunburned badly and even when I fan it and have indoor temperature not too warm, not too cold, not too dry, I still look super red. It's permanent redness, apart from it being seasonal :) I also have seb derm around my mouth and nose and forehead, as usual with winter and the lovely cold weather hives are back too. Currently having 5 on one cheek and 2 on another :( I am trying so bad to not fab with super cold air flowing on my skin, but every darn winter it's the same story. And every fall my skin looks and feels relatively good, and I vow to NOT let it get too bad in the upcoming winter. I just cannot avoid it it seems. I'm pretty darn miserable to be honest. It's draining to have a burning glowing face even during sleep, when you're supposed to rest and have a break from it all. I even have a glowing rosacea flare in my dreams! And thanks to mirtazapine pills I have vivid eventful dreams every night, but when I'm having a sore face, it always features in the dream.I just hope this nightmare ends again in spring. It's been close to 20 years now that I have this rosacea thing ruining my life more or less and it still didn't burn itself out, as my derm predicts and hopes will happen, eventually, with older age.. I am very doubtful, the amount of flushing and redness I'm getting can surely not just heal overnight? I do notice that my hormones play a role in the severity, the week before my period is definitely the worst of the month in terms of rosacea.

Sigh. I had nice Christmas days nevertheless. My best friend, her partner and their two kids came over and stayed for 5 days. It is lovely to have bouncing kids around for so long, and they áre lovely, but it was a shock of the system in a way (the system of the child free - or childless if you please) and neither the cats were very used to all that noise and the amount of toys everywhere. They mostly fled outside hehe. It was fun of course, but also full on with hyperactive kids and their cat allergies and the biggest mess the house has ever seen. Have had an overdose on dinosaurs and sharks, but who doesn't love dinosaurs and sharks.

We had traditional Christmas sweets, opened gifts at 00.00.01s of the early seconds of Christmas day (Ready? ... hang on.. GO!!). We ate lots of codfish (otherwise Jesus Christ will doom us to burn in hell like heathens for eternity for not eating fish). Admittedly, codfish is the go-to fish when it comes to the consumption of seafood. I can see how God would have a deadly serious concern when it comes to the whitefish. I heard the Meijers had salmon on Christmas! They’re well and truly in trouble, doomed forever.

I explained my friends that I was having a bad skin flare period and they are always understanding. But they are also naturally cold and used to 23 degrees Celsius in their own home, so I felt I had to compromise and had it warmer in the house than normal. But I was already flaring anyway, even with the heating off, so I tried to make the best of it. It was hard at times as they're all amazing cooks and everybody enjoyed fabulous foods and I was usually stuck with the bleak (but lovingly made) version of things. Oh well :)

I wonder if it depends on the kid in question and the way they are raised, or whether alll Kinder equal High draining levels. I also contracted the sniffles from my friends' kids, who both had the plague. In terms of material worldly possessions, Capitalist Santa brought me a book on the history of discoveries that I asked for. Oh and we watched a movie from 1939; Love Affair, which was charming. And not even the first movie about a romantic meet up on the Empire State Building. Cary Grant made a remake of it decades later, but that wasn't the original, and apparently the 1939 one with Charles Boyer wasn't either.

Koshka, one of my cats, needed to be taken to the vet last week for apparent flu and a swollen eye. He got a course of antibiotics, an anti inflammatory but also a gel for the eye that contains both antibiotic and a steroid gel.. The doc put the drops in his eyes and I feel terrible about this, but I haven't used it since.. As I am petrified of him licking his eye and transferring the steroid cream to his fur and me patting him and having it on my hands, and then without thinking touching my face with them. It's fairly neurotic, I do realize that, but topical steroids started my entire rosacea nightmare (and only a few days of using it sparingly on my face). I am just so worried to push my flushing and burning over the edge, as things are already pretty poor often. I also have had much more redness and burning and swelling of my face since that vet visit, so I've grown paranoid about the steroid eye gel. Luckily, the oral antibiotic- and anti inflammatory course is helping him a lot, and I rinse his eye with a saline solution. I also didn't see him lick the gel out of his eyes when carrying him home but this sort of worrying is making me feel slightly crazy. If his eye had not improved, I would have used the gel, with tons of precaution measurements.

I went to a Thai friends food truck opening night last night. It was her first night and it was packed! She made all her food from scratch and I don't think she expected so many people. It was nice. I couldn't eat any of the dishes, except for a super mild one with prawns, beansprouts, tamarind and noodles. Delicious, especially to have such different flavours from my regular diet. It was extremely cold and windy and I think I developed a couple of extra cold weather hives overnight.. Oh well. I wanted to say goodbye to her and her Thai help at some point, and he unexpectedly gave me 3 kisses on the cheek. Normal custom, but I usually try to avoid it, if possible, but it happened so quickly and he had definitely something on his skin :(  My bet is some aftershave, it was a pleasant scent, but not something I like on my crazy skin. And it burned, but I had to drive quite a while back home first to get it off with water., Should always bring bottled water and cotton pads over with me probably, but I tend to forget.. It's awful how everybody wants to kiss, and more awful to have to think about these things all the time.

All this painful skin flaring gave me the opportunity to take a little break from the ongoing computer work (art reviews, art columns and lately very successful horse race betting and mathematical analysis so that it's not betting but chance prediction, resulting in some profits, woohoo). But now I was so sore and red that I've been binge watching one of the best TV series I've seen in a while: Westworld. (I know, I used to say that of Game of Thrones too, but their last seasons were slightly more meh. Not this car music theme cover though!).

Westworld features Anthony Hopkins, Ed Harris, Evan Rachel Wood and many others. Stunning and extremely thought provoking. Well, for me at least :)
Just to warm you up for it a bit perhaps, it deals with interesting themes like memory, its value and desirability, what makes us human, what it takes to become human, what it takes to dehumanize, and coming to a higher consciousness. It's brought like a dream in a dream in parts, but always to support the broader story and to visualize something much more profound to the viewer. It made me question consciousness, morality, free will, my inner voice. It is about a struggle for inner purpose and inward journeys. How do we define consciousness in a world where we are creating machines that will be so good at mimicking humans that it can fool ourselves? Machines that are many times stronger and million times more intelligent than us? Will we lose control in the end? And with regards to our memories: how many of them do we really need and want? Hosts can have theirs erased (like in Eternal Sunshine of the Spotless Mind). But it makes you think of your own memory too; memories can be destructive and life changing. Removing the worst memories can make people, or hosts in this case, perhaps better and less tormented beings. If you were given that option, would you take it? Erase the worst memories? Many will say no, because memories are part of your growing process as an individual, and they can shape you and you tend to learn from them too. Are such functions acceptable with the worst memories, when they could be also destructively dragging someone down? In this series, memories ("reveries") are deemed vital for consciousness.

In this show, a theme park is created for well paying visitors, to relive the old western days. All the actors in this theme park are robots however. 'Hosts'. They look just like humans and are programmed to behave almost the same as humans. Only the good observer will notice that they operate in behavioural loops. Guests can do whatever they want with the hosts; be taken along on exciting story lines and adventures, or downright abuse, rape or kill them, which happens at a staggering pace.
The hosts are invented and created by a genius, Dr Ford (Anthony Hopkins). But the park is run by a corporation. This corporation, Delos, has no empathy or personal connection to these hosts and no pity for the shit they are made to go through. It's the corporate world that uses these hosts and wants to make big money out of them. It is set in the near future, no date is given but its the future and we never really see the real world and what it turned into in the mean time (it is possible to puzzle together a date though, around 2052). We only hear that it's cruel and harsh and that rich humans like to pay big bucks to go to this western themed, old fashioned theme park, where they can play a role in the many set up story lines, and do whatever they want. Be their own hero. Unlike in the real world. But it's clear that corporations run the show, as they also run the show in Westworld, or try to do so.

In theory, androids can only closely mimic human behaviour and develop something that might look like consciousness and sentience, but never the real deal. Everything they do, say and think is programmed in the end (with some space left for improvisation, in the series), whereas true consciousness requires more than that. Things like free will and self awareness. But how do you recognize human-like consciousness? The show constantly explores artificial and human consciousness. We're shown hosts (the androids) who regularly display authentic seeming and appearing, believable emotions, across the whole range of human experience. From grief to rage, love, care and so on. There seems no limit to their forms of expression, living their life fully and thoroughly within the “dome” of their personal experience. Exactly like all of us. Or at least exactly like the perspective shown in The Matrix: all of us live within a certain dome of fiction. Pain only exists in the mind. It's in a way imagined. So what's the difference between our pain and that of an android programmed to experience it just the same? They are lifelike, but not alive? Pain only exists in the mind. It's in a way imagined. So what's the difference between our pain and that of an android programmed to experience it just the same?

Yet, there is a clear difference because the hosts are coded, all of their emotions are scripted and they're programmed to remain under human control and within clear limits. Because they are potential hazards, once things go wrong, being so much more strong and intelligent than humans. They cannot really hurt human beings (apart from the odd slap, scratch or catch the kinetic energy force from a non punctuating bullet - pretty much like we discuss often for our invention!). They cannot see certain things they are not supposed to see (they can technically see the, but it is blocked from their consciousness). These hosts have been limited to perceive certain specific things. That they cannot remember their previous “lives” (and if reincarnation exists, neither can we). None of that really touches directly the problem of “being conscious”, but are about control; fail-safe mechanisms, designed so that human beings can guarantee and preserve total control. Held prisoner for human beings pleasure.

In our own lives, there seems to be no threshold that makes us greater than the sum of our parts. We probably can never entirely define consciousness, because for all we know, consciousness doesn't even exist. Compared with the consciousness of apes, dogs, cats. Animals such as dolphins, horses, and certain birds are quite intelligent. They can learn from experience (sapience,) in some cases faster than humans do. What most animals lack is sentience, or the ability to comprehend and conceptualize emotions. A dog will miss you, yet it doesn’t have the intellectual capacity to recognize that it misses you. It is an on-off switch to a dog, a state of you’re being home versus you’re not being home. We as humans are fairly sure that there's something special about the way we perceive the world, and yet we live in loops as tight and as closed as the hosts in Westworld do, seldom questioning our choices, content, and most humans are told what to do next.

Because we are also programmed, by all sorts of influences but ultimately by evolution itself. It has a simple rule set: species must survive and reproduce. Because we need enough food and resources for this, we create competition. If we fail in any of those two, we die. That's it. That's probably the meaning of life. That some geniuses add things that soothe us along the ride, like music, art, books, is only making the ride a bit more pleasurable, but ultimately, no different. And some actually strive for higher things, for culture, for universal wisdom and truths, even religion if you want to stretch it (although I think religion caused most suffering and misery on the planet too). But the majority of mankind isn't occupied with that Enlightened stuff. And ultimately, everything else is just a story we tell ourselves for how we got here and what defines us. But how different are we really from androids in this show, you wonder when watching Westworld? We're all programmed and wired just the same.

The androids are different from humans and not just because they are created by humans. We have freedom of choice, and they are programmed to act and choose based on a predetermined set of instructions. We constantly question our choices, through retrospection. We have self awareness, we know what we are to a certain extent, they don't until they become self aware. One of the hosts in the show didn't know that she was a robot until she was told and until it was proven to her. We can define consciousness, we just can't account for how it arises. It's the state of being self aware, being able to perceive, and responding accordingly to one's surroundings. If the hosts in the show would ever reach that state, it wouldn't come easy,  so you can argue that there isn't much difference between the android and humans. Or you can also argue that none of us have free will, as Sam Harris does. Sam defines free will as the belief that you have the ability to make decisions independent of your genetics or conditions. It is about whether the choices are free of stuff we can't control. If we can't control what's making us do what we want then we don't have free will according to Sam.

So in a way, one could that that the androids are only different from humans, because they are
created by humans and not by evolution, and bc humans can control them. With a different story, we're different people. Without a narrative of self, who you are, where you came from, how you got to now, perhaps we're no different than the hosts. There is no divine or predestined meaning to anything, only the meaning we ourselves create and impose on our lives. And it can be completely altered by a different story.

In this show technology mimics and eventually tries to trump evolution. The series deviates from the 70's movie in several ways and is much more complex, compelling and ambitious in comparison I think (although you need to see things within their time of course).
So, Westworld is a great show, but it needs a few episodes to grow on you. A few episodes, before it feels the makers are no longer toying with basic concepts. It starts off straight forward seeming, but as the story progresses, it opens up a fascinating world.

It also discusses your 'inner voice'. In tribal times, people dedicated it to God. The key to unlocking “Westworld” has to do with Julian Jaynes’s theory of the “Bicameral Mind”. In it, Jaynes suggests that the human brain has not always functioned in the same way. 3,000 years ago, men and women  lacked the linguistic tools for self-awareness and introspection. Their actions were instead determined by a back-and-forth between the part of the brain that’s “speaking” and another part that listens and obeys. Something Jaynes describes as a kind of hallucination where a commanding, external “god-voice” intervened when they had a decision to make. The brain is a fascinating organ.

As explained in this very short clip:

I never looked at Michelangelos painting like that, crazy once you see it, how anyone could have missed that. I take it that it was his covered up criticism on religion and the catholic church.

Some pictures of my poor skin. I wonder if I should start taking diclofenac (NSAID) again, as my skin inflammation seems to go through the roof. So sick of the burning.. I need to occupy myself with other things, hence the postings on here about things I read or watched or that somehow interest me. Or else I go mad I feel.

I also love watching a travel (reality) series called The Amazing Race. It is an American program, but I first watched the Australian version, before realizing it's an American original. They are at season 28 now over there, and I've seen at least half of them, probably a lot more. It's amazing relaxation tv for me; it takes you to all sorts of countries I will certainly never visit in my lifetime, and makes you feel part of a group of people in a competition. It's lovely. You have couples, a group of couples, who race each other in countries around the world, with sometimes simple, sometimes more daunting challenges set up in each country; usually having
something to do with local habits or cultures. The show won 8 emmies (for what that's worth), it's well made and has a good budget, so they can actually travel the world and go to fantastic places. Its strength is not just that, but also the way in which you get to know these competing couples well. The show makers said they never cast for drama, they don't instruct people to create drama because viewers would see through those sort of tricks, and when you cast well, it's also not needed. Being in a competitive race with a partner of some sorts, where every new leg, every new challenge is putting them to the test, creates drama and conflict naturally. And even then, it's not about the conflict. It's just nice to see real humans who show their true colours when on a quest like this. And it's exciting tv because every leg has so many exciting moments. There are road blocks where one of the two of each couple need to complete it (and they only get a hint of the challenge before they need to decide who does it; with a male/female team this can turn out to be the wrong choice sometimes, if it involves a dancer choreography for a man for instance, or a strength challenge for a woman). But then there are also detours, where teams need to choose between two tasks that are different, and they do not know the details apart from a sketch of what is involved. It might turn out one is much more time consuming for some than the other task. There is risk in their choice and it keeps things a bit unpredictable. Good teams can go home due to a single mistake. That keeps it very vibrant to watch. You tend to root for some team or another, after all.

The way the program is shot seemed initially a bit fast and flashy to me, but I got used to it and now love the amount of energy and smiles the American contestants have. Sure, some shout a lot, they can be a bit brash, their teeth seem too white sometimes, but I just love the enthusiasm most have and the way they hug complete strangers in Armenia or Colombia when they successfully finish a challenge. You can tell they aren't used to all the hugs, for instance the stiff Swiss people in the Alps, but who gives a toss, these people are loving their travels and are erupting sometimes almost with joy and cheers. Maybe people hug a lot in general in the USA? I don't know, it's not a normal habit over here, but you can tell that wherever this program goes in the world, there is usually a positive response to their jubilant ways. Nice.

I saw this cool map of the scale of the universe, from smallest to biggest:

(Press start, then use the zooming device).
It made me think of time travel, black holes and whether or not there could perhaps be multiple universes, instead of just the one we have knowledge of now? Not that it isn't big enough haha. There could be many other universes behind/around 'ours'. And could black holes perhaps be doors to other black holes in our own universe, at the least? Worm holes and loopways? All that matter that it sucks in has to end up somewhere. Or could black holes perhaps lead to other universes?

Some scientists are trying to tackle the entire problem of the big bang. Because it makes little sense to my limited brain that all the powers of the universe erupted out of nothing. So two groups are debating and investigating whether or not the big bang could be a collision between other universes, ones we haven't discovered yet. Or, whether or not our universe could be like a balloon, inflating and deflating all the time, creating big bangs time and time again.
Wished I was smart enough to be a scientist dealing with such a topic. These black holes are the floor drains of the universe, the cosmic vacuum cleaners. They even suck up light and natural laws! They are the villains in Einsteins world. Hollywood seems very interested in black holes too (Superman/ The Black Hole / Interstellar / Planet of the Apes / Futurama).

Gravity has always been a bitch in the past, Jules Verne wanted to go to the moon and thought of a cannon, shooting a rocket to the moon, as to defy gravity. In reality, cannons can only launch a rocket to 150 km height. Then gravity takes it back. It would be possible, but a bullet would need to travel at least at 40,000 km. an hour (one round around the planet in an hour, and 11 km a second). But light goes much faster; 300,000 km per second. In 1/10th of a second it travels around the world. So you can easily send light to the moon. On Jupiter (11 times bigger in diameter than Earth), the escape velocity is already 6 times bigger. The sun is 100 times bigger than the planet and needs an escape
velocity speed that's 60 times faster than what we need on earth for something to escape from its planets gravity. And when a star is big enough, its gravity will become so strong, that it can even bind light to its surface! (John Mitchell). That means that the biggest stars are black. That was already discovered in the late 18th century. Fascinating thought, that the blackness we see in the sky at night, between the stars, could contain tons of gigantic stars that are so heavy that they swallow up light.

You have small, medium and large stars. The smaller they are, the more peaceful their life will be. The big boys live short, powerful explosive lives (the type of star Patrick Bateman would have chosen if he was given the options). Our sun is a small star. A modest one. Only lived 5 billion years and is halfway through its life. It will slowly burn up and get hotter and hotter in temp. as it nears it's ending. By then it will be too hot on earth for oceans to exist, they will all evaporate. That's when the sun will slowly but surely expand, becoming a red giant and he will eat up the planets one by one, starting with Mercurius, Venus and then Earth. The remnants of the sun will be visible as a planetary fog and if any humans still exist then, they'll have to find another place to live. The ashes of the sun will eventually be squeezed in a very small star. Its atoms are pressed together with enormous pressure, making it super compact and turning the sun into a white dwarf, the size of the Earth, consisting of carbon and oxygen. Small but heavy.  It has an afterglow for a long time.

Funny enough, though the white dwarf future of our sun would be comparable in size to Earth, it
would still retain the mass of our sun. You could only imagine how long it would to radiate that level of energy in the form of convection and light. Long enough to where it is theorized the universe is simply not old enough (at fourteen billion years) to have formed any black dwarf stars. Even the very first stars after the Big Bang wouldn’t be old enough to have devolved into a black dwarf yet. I can only imagine what that would be like.

The medium and large stars have a different
faith. We can hear them, just like we can hear Earths cosmic sounds; triggered by charged particles that move past the magnetic fields of the Earth. Every planet has its own sound. Jupiter sounds super ominous!! I love Saturns sound too, you can almost hear its rings. And here are a bunch of them, Neptune literally sounds like the sea. I find them fantastic

There are 2 space travelling Voyagers on their way now to new solar systems; they left in the 70s and they are already in the interstellar space now. They not only can record the combined sounds of our entire solar system, but they also have a present for any possible life in other stars (a couple of 100,000 years to go before they reach them). And the present is a golden record, with audio of our earths sounds, voices, animal sounds, music, welcome messages etc. When you think about the Fermi paradox, then there must be other planets out there with life forms. Given how many stars there are and how relatively easy our planet developed intelligent life. 'Where is everybody?'. The chances of there being intelligent life out there that started before our system here
are big, and that meant they would have had all the time to develop and master the universe. And to find us! Why don't we see them? Is it too difficult to create life? Did civilizations destroy each other too quickly in nuclear wars? Or could planet Earth be like a nature reserve, that is watched from afar like some experiment, showing a primitive way of living? Maybe our lives are showcasted every night on some far away planet for amusement? The Kepler is searching for planets near other stars that could have potential life forms. Kepler found already 5000 candidates, who could potentially be exoplanets.

There are also stars making Pulsar sounds. I'd say they are audio lighthouses in the galaxy. These medium stars make space sounds too, and they sound very rhythmic. Those sounds are the remnants of a medium star that crashes and implodes. You hear the atoms crashing together, until their atom centres meld into one big atom core. The material of such a neutron star is so compact and gets so dense that a small hand sized rock would there have the same weight as the entire Mont Blanc. One grain of sugar on there would be as heavy as a million kilo bags of sugar here (or as 5 sperm whales).
The ricketing sounds also has to do with the whirlwind tornado shaped movement; the turning speeds up as the diameter decreases. The fastest swirling pulsars go 1000 times round per second. Hence, another cause for these sounds. They give a strong radio signal also therefore.
So it has to do with the demise of these medium big stars.

Sometimes you see a new star in the sky at night, it's usually very bright and only stays there a few months; a Supernova. Bethlehems Star might have been one! But there are more over history, another one was well documented in 1054, 4 July. In Chinese sources, in European texts, and even in paintings from Indians this new and very bright star is documented. Now we know that it was a spectacular star fog with a very bright pulsar.
In the Milkyway we have 100 billion stars, more or less, and what is outrageously fabulous (I think) is that one exploding Supernova produces the same amount of light as all the stars in our Milkyway together. Just wow. In those explosions, all the elements are produced (nitrogen, oxygen, iron) to build planets and life. We're all created by star dust, yes. Cheesy as it might sound. But if a Supernova explodes close to our planet, it's kind of dangerous too. We have currently a star (the right shoulder of Orion, a red star - 1000 times bigger than the sun) that isn't very far away from us, and is building up to explosion. It will happen between now and 100.000 year, scientists predict. Those living then will see something spectacular; a star giving as much light a a full moon.

So small stars become white dwarfs. Medium stars become neutron stars with radio pulsars. But what happens with the real big stars? The heaviest stars? Einstein made a theory about them. He said that space is curved and a heavy star can make space bend. Gravity can be unlimitedly big. So strong that it also hoovers up light. For a black hole, our Earth would be nothing less than the size of a key ring. If you or I would be approaching a black hole, we'd have to obviously stay away from it, but it will pull at us and the closer by you get, the more gravity pulls you in and tears you apart ('spaghettification'). But what Einstein said is that when you come closer to a heavy object and when gravity increased, time slows down. If you live on the top floor of a flat and I on the ground floor, you live 1 millionth of a second faster than me. If we'd fall in the black hole, this would have big consequences. Its crazy but if you would watch me, from a distance, being attracted by the black hole, you would have an entirely different experience of it than me. For me, I would go past the point of no return and be pulverized, but you would see me approaching the outer ring of the black hole, and the closer by I get, the slower I will seem to move to you. And before I even reach the entrance of the actual black hole, the image will freeze and stop for you. You will see my contour and shadow fade out, that is all you will see of the process. Beautiful eh? Thanks to the relativity theory.

In 1939 Einstein thought out something else. He thought that 2 black holes can be connected to one
another. Space is curved, so two points that normally lie millions of light years away from each other, could be brought together if space curls up and bends enough. A worm hole. You would throw a ball in worm hole 1 and could see it come out of worm hole 2. Time and space are more or less the same, so a worm hole that connects two points in space, can also connect 2 points in time. That could theoretically enable time travelling. But that brings all sorts of problems, like the paradox that you can go back in time, prevent your parents from meeting and prevent your own birth.

An isolated black hole is difficult to see. All it does is bending space, like a lens. But sometimes a black hole stands next to another star, and it can then suck that star empty and you can see that. You see the matter being sucked in the black hole. They fast turning matter gives off röntgen radiation. The most special black hole is the one standing in the center of the milkyway (called Sagittarius A star). It is much bigger than other black holes and has the mass of 4,5 million suns. It must have consumed millions of stars already, or perhaps it was created at the very start of the universe. Our sun makes circles around it. And every solar system has these black holes. Violent stuff! We might feel its effect, going by Einsteins theories. Space and time can be deformed, waves can be formed, and a black hole emits gravitational waves. Stretchings of Space that travel through the universe. If it passes us, we will all stretch out and back again shortly (but only the length of an atomic center). But special devices can measure this.

Stephen Hawking discovered that black holes don't necessarily have to be black; instead they can emit some sort of light. Quantum mechanics offered this loophole in nature's law. Some particles are sucked up by the black hole and gone forever, it goes to the end of time, while some other particles can bounce back from the edge, can move freely and starts to glow. They can glow, because black holes emit warmth radiation (but this goes very slowly). It also proved that black holes do not let everything they absorb disappear. It is still there, though cut up and mashed. It's like confetti, coming out of black holes. On the horizon of the black hole, all the information of what goes in is stored. You could say that the horizon of a black hole is like a movie screen. And that we are illusions, brought up by the black hole. And the black hole is the entire film.

And did you know that the largest unit of measurement in Metric is the yottameter? Those are so damned large, the universe as know it is roughly 930 yottameters in diameter. Yes, we have a unit so large that the entirety of existence can fit within a thousand of them. Check it.

We need to develop the means first to travel a lot faster, if they want to colonize a planet outside of
our own solar system. Rest mankind they will ruin every planet they get their claws in. As it stands now, space shuttles take 165,000 years to read the next solar system with a conventional rocket, IF we were even ready to launch it with enough speed (which we can't). And the voyager spacecrafts would need 10,000's of years. And the faster New Horizons spacecraft would take 78,000 years to reach our nearest star system (alpha centauri) or the nearest Earth-like planet (Proxima B ). And then there is the problem of the distance that a rocket can go being limited by the amount of rocket fuel that it can carry

But I'm sure they'll figure better space crafts out sooner or later. There's already the (Star Trek) warp drive idea, where space is distorted, and it pushes the spacecraft forward at a speed faster than light - not breaking Einsteins universal speed limit therefore (bc if it did travel at the speed of light, time would be slowing down and its objects mass would inflate to infinity, as its speed energy keeps infinitely adding to its mass; that's not something we can work with in terms of spacecrafts). Wave riding in a warp bubble of flat space, and it's space itself around the bubble that moves faster than light, which is perfectly fine with Einsteins theories. Space can indeed travel faster than light and already did so in the past, after the big bang. So, also no g-force problems for staff on board either then, since only the region around the bubble moves, and the spacecraft is just carried along and therefore doesn't interact with relativity/laws of speed of light. Like teleportation, time dilation, binding points in space so that they are temporary close together before stretching apart. Problem is that it would need quite a LOT of energy to create this warp bubble. And even more problematic; the type of energy it needs. It's all great in theory to bend space to create a propelling force (by creating a gravitational field that pushes away, instead of an attracting gravitational field), but it has to do with negative energy density, and we haven't found matter with a negative energy yet.. (but quantum mechanics does predict that it exists). Worth investigating because it would reduce the travel time to alpha centauri to a few days

Although scientists are even trying to work on that:
"Krasnikov proposed that, if tachyonic matter could not be found or used, then a solution might be to arrange for masses along the path of the vessel to be set in motion in such a way that the required field was produced. But in this case the Alcubierre Drive vessel is not able to go dashing around the galaxy at will. It is only able to travel routes which, like a railroad, have first been equipped with the necessary infrastructure.The pilot inside the bubble is causally disconnected with its walls and cannot carry out any action outside the bubble. However, it is necessary to place devices along the route in advance, and since the pilot cannot do this while "in transit", the bubble cannot be used for the first trip to a distant star. In other words, to travel to Vega (which is 26 light-years from the Earth) one first has to arrange everything so that the bubble moving toward Vega with a superluminal velocity would appear and these arrangements will always take more than 26 years."

And in order to place all this infrastructure, you could argue that an Alcubierre Drive is needed in order to create an Alcubierre Drive So not really going anywhere yet.

Some more pictures of my skin the past month.


And in comparison, my skin in summer a couple of years ago: 

No comments:

Post a Comment

scarletnat@gmail.com, http://www.facebook.com/scarlet.nat.3