24 August, 2014

Update day to day life II, August 2014 - January 2015



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.  




August 2014 

My skin has been really good the past month. I think it looks a bit less red and more pale for a good portion of the day, although I still use a small fan often. It's rather warm but I can handle the 23 or so degrees inside, as long as I have the fan on (on low). When my skin is not red, it doesn't hurt too much. A bit of tingling and slight burning now and then, but nothing like the feeling when it is really hot (lots of heat sensations, pounding burning feeling).  What have I been doing different the past month? A couple of things. I am not sure they are the culprit and always try to be vigilant with making assumptions or conclusions, but like to share the observations I made nevertheless.

1. stopped wearing my contact lenses. I have been been wearing them since my teens and I never thought anything of it. Am having some burning eyes from occular rosacea lately, and I stopped wearing the contacts for some months now. My eyes are -2,5 so I don't see very sharply without them, but when I drive or watch tele I can put my glasses on instead. So not only did my eyes get less painful now, I also am less red. Never made a connection, and still don't think it's fair to do so now conclusively -yet- as there are so many variables that could be at play, and maybe this calm skin period is just down to the summer weather. But I I already feel I get flushed from dental materials, or from wearing a necklace or puting nail polish on my nails. Maybe, just maybe, the silicons of the contacts somehow caused some auto immune response? Since I have been diagnosed with out of whack auto-immune levels, and test showed auto immune reactions going on already. So since those contacts are also costing me a fortune, I might just stick to the glasses/poor eye sight.

2. spraying Avene thermal water spray. I had very little expectations of a can of, basically, spring water. But a rosacea friend in the States said she used it in summer to hydrate and freshen her face, so I reckoned I should try it too. Used it in the past to no avail but I have to say, much to my own surprise, my skin seems to like it. The lady selling it had a long winding story about its proven anti inflammatory and anti redness actions, how it was all tested, scientifically proven and consists of nothing but thermal spring water. I don't know for sure if it is helping or not, but it's certainly not making my skin any worse (and I think it maybe improves it actually). I tend to spray it on twice a day.
3. exercise. I've been walking every evening, about 15 kilometers, the past 4 months. My skin can handle it when the sun is almost setting and there is a bit of a breeze. I use flat roads so I don't get too stressed and red. Feeling really so much better since doing this. In the beginning it was literally a matter of dragging myself out of the house but the past months I really got in the hang of it, I chose the deserted areas to walk where you don't meet many people, just nature and wind and the odd wild animal, I bring my stick for that. Music on mp3 and I think that the exercise and the slight loss of weight has also been helping getting some of the flushing and redness down.

4. sun exposure. Have been sunbathing my body only in the past months, whenever possible. As I described in the Vitamin D blog post here, I do this for half an hour or so a day, around noon when the sun is most strong.I noticed I was more flushy and red in the weeks where I had 20 minute 'bakes' every day, but now that I already developed the tan and can do with maybe a once a week session, my skin is lots more calm throughout the day. I reckon the build up of vitamin D3 is showing some effect now, and the initial flush from the sunning was a small trade off. I built this little place in the garden where I have my face under covers, and place a fan as well on it lol, it has become like my little extra symbiotic body part almost by now :) Having a decent body tan by now and hopefully created and cracked up the natural vitamin D3 blood levels. My face is always covered up, let me stress that again. When you get a sunburn easily, I wouldn't recommend this. I only tan (except my face, which does get a sunburn). When you use sun cream, it will block the absorption of the sun rays and the conversion of them into Vitamin D by your body. Of course; when you are out all day in the sun, I would never write or suggest to not use sun cream. But when you only are out in the sun for a mere 20 minutes a day as I am for this Vit.D 'project', and you tan naturally, then it is best to do it this way according to my immunologist and derm. In my case, I have to stress, as I have a Vit.D3 level of 6 (where it should be 50), and because I get too flushed from Vit. D3 supplements, and -as I said- because I get a protective tan instead of a sunburn on my body. On top, I responded to this Rosacea Forum post and replied there regarding sunscreen: "I'm actually with Davekelly on this one...[he wrote: "That's madness . Never put anything on your Face . Just wear a hat" and got some slack for it] It's a very personal thing and rosacea comes in so many grades and variations. If your skin handles sunscreen well and won't burn or sting or turn red from it, then that's great. Sure it is needed to avoid sun exposure on our faces. But there are also patients here with totally intolerable skin sensitivities, very reactive redness and flushing and for them, I agree with Dave. I can't wear any sunscreen either, they will all make my skin tons worse and for me, wearing a hat and avoiding the midday sun or staying in the shade on those hours of the day has by far been the best solution. But everybody is different. Just don't assume that because sunscreen is protective of UV rays, that it comes in a mixture that is appropriate for all rosacea skin. Have a look at even the most 'organic' brands (I ordered and tried them all over the past decade), they still often come with parabens and perfumes and oils and other potential triggers for those unfortunate enough to react to them. And the ones with the least baddies in them still mde me bright red and on fire. I think it's fair to say that when your skin tolerates sunscreen, it is great, but when it doesn't, you are likely to worsen your rosacea substantially on a daily basis with sunscreen, no matter how noble and good its general purpose. Everyone will know for themselves in what category they fall :) Best wishes" 

5. Diet. I stay away from dairy mostly. Realized at some point that the more frozen yogurt I made in my ice machine, the more flushed and red I became. Milk and dairy products like yogurt have a lot of natural hormones from the mother cow in them, and they tend to be of the estrogen type. I assume that those hormones might stir the flushing up somehow for me. Or perhaps it has to do with some inability to digest lactose properly for me, I don't know. Just know that sticking to almond and rice milk works better for me. I now eat this usually; breakfast, a pear or peach, lunch; I make a pancake from wholegrain rice flour, almond milk, an organic egg and I put applestroop on it, a Dutch thing, made of apples and sugar beet, its very nice, would compare it to a type of fruit marmalade. Dinner is usually a stir fry of vegetables like sweet potato, courgette, broccoli, carrot, and I add olives and some dried prunes plus some organic minced beef or chicken. Occasionally fish like tuna steak or salmon. Then I every now and then make my own chocolate, or choco milk, with pure cacao powder. The home made chocolate; melt some coconut oil, add some rice flour on the stove in it, add almond milk, sugar and cacao, keep stirring. I add a bit of tapioca to it for cohesion. Then let is warm and stir it for a good 5 minutes, then I let it cool down and out it in the freezer and in an hour or so you have great chocolate with not too much sugar and no rubbish. Read that dark chocolate has anti inflammatory properties but eating too much makes me flush so I stick to a little bit at night and skin has been calm. Loving the taste of it too :) I try to avoid gluten but when I do eat bread ever so now and then, I have no skin reaction from it. I avoid hot drinks, sugary drinks, fruit juices, multivitamins, vitamin C, zinc (they all make me flushed), coffee, spices and pork. I tend to eat things from scratch, not prepacked and always try to avoid preservatives in food. You can read more on rosacea and food in this blog post of mine. 
           
6. Medication. I still use clonidine, 0,075 mg 3 times a day (every 8 hours). Propranolol 40 mg at night (used to take 40 mg, every 8 hours, but I am getting away these days with a reduced dose of once daily) and mirtazapine 22,5 mg at night. Plus Xyzal 10 mg a day for allergies. Seems to be going ok so far and I intend to keep using it, as I seem to digress every time I stop using one of the meds.




Oh, and in an update on the dental issues: I still think I made the right decision there... a very tough and outrageous one, but I sensed instantly after the dental work how my entire face and forehead were burning up and getting mighty red and inflamed and in rashes. For a month at least on and, getting worse and worse to the point where even the dentist was distressed seeing my sore face, as well as my parents. The sheer hell and misery of having a face on acid-like fire 24/7 again. It is very depressing and distressing too, that this is what seems to happen with me every time I have stuff like this happening; sutures of any kind, dental fillings. But within weeks after that and the antagonizing antibiotics, my skin just calmed down again instantly..  And its about ten shades calmed and less red since than it was in the months January-March 2014, when all this was at play. I almost developed this zero tolerance thing; nothing can mess up the balance I have finally found with my rosacea. That balance consists of needing a small fan, needing to avoid my triggers, spending insane amounts of time indoors during the warmer months, accepting flares but having a relative calm, relative pain free and controlled rosacea face most of the time. I don't panic anymore when I flare as I by now understand the triggers and know how to cool it down (cold pack wrapped up in a perfume free cloth, careful now and then cooling of the cheeks with it, preventing frost bite at all costs, having the fan on and airco if needed). I no longer want to take risks by trying laser and IPL, I found some acceptance with the status quo, focusing on work and friends and options to get out and enjoy myself and accepting the time needed indoors and cooling down, in order to keep the balanced skin. It's not the life I anticipated or wanted but its a lot better than it was in 2005, so I hold onto that mainly...

I wrote on the forum to a member about the impact of rosacea on your lifestyle: "So sorry Ree for your distress. Yeh we have mostly all been there, unfortunately, and many are still there some days. It never stops to surprise and sadden me how many otherwise confident and positive people can be brought to their knees by rosacea. It has such an effect on all aspects of your life. I literally had this conversation this week with a forum member from here and we both admitted to often thinking how we would have instantly swapped the rosacea for a leg. You can't say that to anybody other than a rosacean, or they will think you are nuts. But it has to do I think with the total lack of control over our faces and how it prevents us from doing all the simple and good things in life. In a wheelchair, lets put it bluntly, I can at least go to the pub, have dinners with friends, socialize. That's what rosacea does to your mind I guess."  I seriously read so many heartbreaking stories nowadays from rosaceans, and so many are in distress, had to turn their lives around, stay indoors a lot. So many people who were very successful and thriving before rosacea hit. The huge impact of this disease never stops to baffle me... 

I also use my laptop most of the day, but I seem to have not much of a problem with the flat screen of it. I do have the brightness set to low or lowest, and feel that when I don't do this, the brighter light makes me flushed. But on low it seems to not cause me any problems. Regarding skin topicals and skin care: I used Biotherm moisturizer for years, also during the first years of rosacea, but at some point my skin got too sensitive and hyper reactive to it. Then tried natural oils like almond oil, and the mildest moisturizers I could find, until a new derm said my skin looked way too irritated and clogged from creams, and that she felt I needed to stop experimenting with topicals and leave it alone. Thought she was joking, but she seriously wanted me to give it 6 months, let it go through the initial dryness stage and she said that even though I think my skin is dry, it should be able to restore its own fat making abilities and to give it time. Was rough in the first months (dry skin, tightness, felt very awful), but the past 8+ years I have not used topicals (apart from maybe once a month the use of jojoba oil, but even that sets it off often), and she was right, in my case; my skin did get less dry by itself with time. And a lot more calm. So now I use nothing on it, I wash it with cotton pads and bottled water (low in chloride and other chemicals), I spray my Aveene mist thing whoch seems to calm the skin down, for some mysterious but delightful reasons. And that's about it. My shampoo is free of chemicals and even of Laureth sulfate by the way. I use a cold air humidifier when the air is very dry or when my skin feels right, it blows cool mist and cranks the humidity level up. Also drink plenty of water and I understand that having dry skin is a trigger for redness and flushing and burning, but I also see that in some cases, with hypersensitive rosacea, topicals can do more harm than good. Again, like with the sunscreen; that seems something for each and every one of us here to figure ut for themselves. If you react well to moisturizer, I envy you! Congrats. But all I can say is that for me, with a dry skin subtype, going topical free has been a good thing and my skin is now calmer than it was in all the years I tried to find the right moisturizer..




Update, September 17th 2014

I had my last wisdom tooth removed yesterday, what an ordeal. Nice young Belgian doctor and I told him that the last time I needed more than 12 anesthetic injections and he thought it would be different now, but turned out the same way. Showed the X ray and it was a very tough wisdom tooth, completely breached and with difficult roots intertwined with an important nerve, so he said he would remove the top of the tooth first and then decide if it was safe enough to get the root out. Luckily that all went well and they had a whole team called in to see how you remove such a hooked tooth, but after 5 injections he started drilling the tooth off and it still hurt badly, so needed another 7. Tough to get the hooked thing out and they needed to drill quite a bit off my jawbone. Yesterday rosacea was fine, I think from the immense amount of adrenaline they put in the anesthetics, to keep it longer in the nerves and have the blood vessels constrict, but today, massive inferno and my jaw feels so painful. I can't sleep from it.. had four 600 mg ibuprofen but they burn my stomach so take nothing now. Feel so smashed up. Asked for antibiotics as I always get infections but this is Holland and that means extreme conservatism with medication, so I didn't get any. Hope it wont get infected as the others did in February but will keep an eye on them. Look like a red chipmunk. Yesterday my rosacea was calm all day despite the procedure, but today rosacea is bad. It's always good on the day itself, maybe because they put so much adrenaline in those jabs and they are strong vasoconstrictors, to keep the anesthetic longer in the nerves. But today its pretty red and sore and my mouth feels like its butchered, reallly sore today. Thought it would be better instead of worse. Feel like shit.




Update, September 20th 2014

Update on my own little issues; skin was ok'ish today, not too bad and the pain is finally getting a bit down. It was kind of brutal the past days. I took 600 mg ibuprofen (a type with no bright pink coating nor orange zest chemical flavors, just simple white pills) but the pain came through nevertheless and after 2 days my stomach hurt so bad from them that I tapered it off. Couldn't sleep Wednesday night from the pain, but now it's Friday night and I haven't taken the meds all day and it's fairly diminished by now. Am rinsing my mouth very often with sterile salt water to prevent infection, so far as far as I can see with the flashlight it doesn't look infected.  But now that the pain is diminishing I can feel that the right side of my chin is still pretty totally numb and the right lower part of my lip too again. When I rub it it starts to tingle really annoyingly and painfully and when I just lightly touch it, it still feels number up, like during the procedure. I can press my nails in the skin very hard and feel as good as nothing..I had the same happening in February with my upper lip btw. The same feeling. Doctors then said it should recover nerve sensory in 6 months. Friend thinks it is because they used again soooo many anesthetic jabs again now.. The upper lip is almost back to normal, but it took indeed 6 months! I bloody well hope this goes away sooner. It is only localized there, so I don't assume the doctor hit that risky nerve after all.. Can't imagine a crucial nerve only limitedly serving the area of right side of the chin and right lower part of the lip. What the bleep is wrong with me, every time this happens. Rosacea is not too bad, not as good as it was either, but I still have sutures in, plus wound healing, so I guess that will all stir it up right now.

 



Sorry for lack of smiles, I get slack for that a lot from a few friends, but just don't smile usually in pics, not sure why not.. Oh and for comparison, this was during the dental stress, in February 2014, so less than 5 months ago (first picture below). And the next pictures show a rash from eating normal chocolate and not scrubbing my skin for some time. It usually subsides and normalizes in a day or 2. 







Update, October 27th 2014
My skin used to be doing fairly ok the past months, harder to get flushed, less red, less pain. But it has been cold the past weeks here, massive drop in temperatures, and my skin really worsened almost instantly :( Could hardly belief it would respond so quickly. The past week I have been flushed almost all the time, and it's worst at night and when waking up. Takes me about 3 hours behind the fan and with cold packs to make it subside a bit. I managed to go out to dinner a few times, mostly because I had promised so on an earlier date, and that went ok. I was red and sore but it was not a full blown flush, so having iced water and bringing my cold pack and being wise with the menu choices made it all pleasurable experiences nevertheless. Here are some pics of today. They were taken in the afternoon, so the redness had gone down a lot by then from cooling. The problem is; because my skin is red and flushed or semi flushed for all these days in a row now, it burns and feels hot and very painful constantly. Even when the redness is brought down a bit again like here. When I manage to not flush for a longer time, the pain is gone too, only some tightness and slight heat in my cheeks. So I still find that the best way to control not just the flushing but also the pain, is to stay unflushed for as long as possible.



I also found some old photo boot pictures back from my teens and twenties, when I scrolled through old diaries. I used to make some and then put them in diaries.





My nephew wrote a long letter to Sinterklaas today with his wishlist for presents. Sinterklaas usually resides in Spain (it is part of a cultural celebration we have here, where kids ask presents and Sint will bring them early December, with the help of his Black Petes and coming with the boat from Spain), but today the letter went to Nijverdal haha (my mothers address). Glad he didn't notice, was very cute. I drove past the nice canal boats here today and it reminded me of one of dozens of side jobs I used to have. It actually was one of the nicest side jobs I had as a student, working on the canal boats. Officially serving drinks and food, as the old man of the family running it used to do the same dreary audio tour every hour, but sometimes you ended up talking to tourists. I remember one American man and his wife, they were really interested in history and so I chatted with them a lot about the city and its museums and history, and at the end before getting out he pushed me 100 euro's in my hand (the trip was only about ten euro's!) and said I should keep it for myself, as it was a thank you for my nice stories. "Don't share it with the rest" he said again. And me, silly girl, I was in inner conflict later on; did anyone see it perhaps, was it sneaky of me to go past the rules, which were to put tips in the general pot and divide. I did the honest thing and regretted it because the boat family running it were like gray scare crows, grumpy, a bit greedy, they shared it equal with everyone, even all of themselves who weren't even working on the boat at the time and I ended up with only ten euro's of tip money. Would have been so much more nice of them to at least give me a bit more than the rest given it was my own extra work. Dutchies never give tips and this was extraordinary. I am not pure goodness, as did let the evil thoughts run through my mind for a bit, but the good usually wins. I kind of knew the family would not split the money but in all fairness, I was a bit delirious from it all and wanted to not only share but also break the little news and as expected, most responses were either casual or complacent. The wife really looked like Ebenezer Scrooges wife.. So sour, so bitter, they just about ripped it from my hands. My own little Dickens tale..


I'd love to have one of these houses and some geese and sheep. 






The fabulous Ross sisters. Try watching it from 1:26 onwards, they look cute initially but they are snakes, no bone ion their body, it is the only explanation.

   

More silliness, I like the clips where they write down phonetically what the foreigners appear to be singing. Think i shared one before, we call it Mama Appelsap in Holland, it's a radio item, a favorite one. Many countries have it I guess. Here is a Bollywood one. Haha someone wrote about the down (red arrow) voters: "67 people need a bun to bite like benny lava"

   

Speaking English as a German:

   





This free card was available in bars and public places the past month, it's a brand called Boomerang which offers free postcards here. This one says God is good. It caused some outrage, people found it too harsh on the eye but I think it was a fine card and just shows the evils religion can inspire in people. People might have evil urges by nature but nothing sets people more up to acting out on them as something as religion, dealing with the afterlife promise. I generally like religious art however. Monks were the ones who used to write over all the books back in the Medieval times, also the christian monks, before the book printing techniques were discovered. Painstaking work, a bit what I do online for work half the time now haha, but they had to hand copy entire books. Beautiful hand writings often, very fluently and many illustrations were added. Dedicating their life truly to books and isolation. How life and it's pace have changed for many. I often wonder; would the average person have been more satisfied in some ways perhaps back then, compared to now? (If you set aside the poor health and working conditions etc). If you would introduce a 17th or 18th century person to the current times, he or she might think we came so far, that there is such democracy in terms of health care, life expectancy, choices in life. But those choices seem to make some people also unhappy, especially in the west. They followed ten students in a Dutch tv documentary some years ago and half of them were restless, nervous, depressed even, unsure they made the right choices in terms of studies, friends, partners, where to live. Some said they felt paralyzed by all the options out there, and ultimately the sense of responsibility for their own happiness and well being. Then social media magnified those angsts, by confronting them daily with the 'successes' (wether real or idealized) from others. I realize it might be different in other countries, but here, for many, you can no longer blame your trade or background for the way your life pans out. And some in the docu said they felt depressed about feeling unsatisfied with their life, and felt a massive pressure to make the right choices; any unhappiness they felt, they took very hard and blamed entirely on themselves. Maybe the simple life of these old monks were in some ways very rewarding. Maybe they had more acceptance of their fate and could focus their energy on a few things in life and be more happy with that. Maybe not... I just wonder. In a way I feel that being cut out from some choices in life due to rosacea, has not been total evil so far. I rather didn't have rosacea of course, but I did find that having more limited choices of everything, leisure time, food choices, holiday choices and so on, brought also a lot of appreciation and enjoyment of the things I can do. And the same goes for the ups and downs of rosacea. Now that I am flaring again, and feel more housebound, I appreciate the good times I had and still have often a lot more. I did find peace I think in the way I live my life now, alternating social periods (well relatively social, I'm not a social butterfly by any means) with introspective periods.




I thought some more about 'the' Dutch mentality.. What does it mean to be Dutch and how do Dutchies manifest themselves? 
Dutch like their sportsmen and celebrities to act as normal and down to earth as possible. We had a Dutch swimmer, Pieter van den Hoogenband, who won a lot of olympic medals in 1999. Dutch news made a news item on him that night and did it typical Dutch fashion; they went to his old school and asked the concierge what he had been like as a kid. "A VERY normal down to earth kid". Ahhh, the Dutch viewers could lean back in relief again, that's how they like to see their heroes. Our national motto is a French one; je maintiendrai: I will preserve. It's from 1815 but according to many here a more fitting one would be something like; 'It has to be possible'. Holland has a culture of tolerance. You even see that down to earthiness with the politicians people elect here. We had a PM called Balkenende for some time and he was really a nerdy guy, as they mostly are here. Very awkward and at the G20 in Pittsburg in 2009 Holland was finally invited. Michelle Obama had to greed the world leaders and Berlusconi opened his arms for her but she kept him really at cold distance. very faint handshake and then she went to Balkenende who stood there as a timid schoolboy, not expecting to be noticed at all, and he got a big hug and kiss to everyone's surprise, incl. his own :) Sweet pic. He later didn't speak a word at that whole convention haha, we don't count in the big picture, and he had to be explained it had to do with Uruzgan. But that made him very popular in Holland; big spreads of these pics in the Dutch papers. It touches some of the dutch culture; we love humble, down to earth leaders/celebs/sportsmen/etc. Just be normal, they have to appear as if what they do is nothing special and that they don't pretend to be more than they really are. There is a saying here; je hoofd niet boven het maaiveld uitsteken; don't stick your head above ground level. They really hail people who
stay under that imaginary line. For instance, Marco van Basten was one of our finest football players and then he tried to be a manager and he failed badly. Both with the Dutch national team as with Ajax. After 9 months with Ajax he held a big international press conference and just told everyone; "I stop because I just am not good at this. Something you have noticed already as well. Good night." And that was it and the next day the papers were again full of it, how beautiful that was, how humble. In contrast we have Johan Cruijff who really revels in his own excellence and he has a lot of credit because he was such an outstanding player but 'we' don't like that attitude. He is often seen as rude and smug. (I do like that attitude btw, as it is a bit more political incorrect and it gives more interesting interviews etc). But we have more of such figures and they just make a 180 turn on the down to earth example and just do the total opposite. Others are a famous late writer called Harry Mulisch and Pim Fortuyn, the politician who got shot and killed was also like that. Portraying their knowledge and proclaiming their excellence. But most Dutchies can't appreciate that and get very annoyed or even aggressive from it. All in all its a bit of the silly brother of Europe perhaps, not very proud. Dutch society has been one of the more prosperous ones for the past 5 centuries, and Dutch people are ranked high in the OECD better life and ranks among the top countries in a large number of topics in the Better Life Index

It mentions a lot of things but also this; In general, 82% of people in the Netherlands say they have more positive experiences in an average day (feelings of rest, pride in accomplishment, enjoyment, etc.) than negative ones (pain, worry, sadness, boredom, etc.), more than the OECD average of 76%. But nevertheless, people are grumping and complaining a lot here. Nothing happens ever here. I read that it has to do with that equality here, we don't have as strong a hierarchic structure. Not a top who tells the masses things are like this or that and who you can agree with or protest against. Instead everybody here feels equal in many ways and everybody is used to saying what they think and complaining and debating, so its this cacophony of voices of how things are and should be. Everybody knows always what should be done and how it has to be so everybody has opinions about basically everything. But it makes it seem as if Dutch are always complaining and never are satisfied with anything. For instance, a national opinion poll company asks Dutchies every 2 years what they think of the country and what they expect of the future. On virtually every question they consistently receive criticism from the interviewed people; it's always a mess with the country, all politicians are up to no good, nothing goes well, everything has to change. Health care; all parasites. Lol and then the very last question is always; how would you describe your personal well being? And the past 3 decades between 82-87% answers that one with "very content" :D Holland is very decentralized, we organize our lives on mini scales, with family and friends, and the living conditions are actually very good here, and we will call for the politicians only when we need them. Where does that mentality come from? From the Medieval times on Holland had a strong sense of equality, the feudal system, the hierarchy of it, never really got a hold here. Very early on Holland had independent wealthy farmers and merchants who were self supporting and totally obtained from hierarchies. Later we had businessmen and trades men and regents. always divided powers and not one single person who had all the power here. Since the uprising we had a regent (governor) serving the people and a grand pensioner. We also never had one single political party in power, always plenty of political parties. Maybe all that made dutch people hate hierarchy. You see that reflected in our political debate system; we call it the Poldermodel, it refers to the constant long term talking we do here, in businesses and politics, to come to an agreement and a compromise. This is done around round tables typically and you will see this even come back in news tv shows, or discussion shows; the Americans have one presenter behind a desk typically. And the interviewed sit on his side. Or ladies talk shows have them all seated on a couch. With us there is not one boss but we all sit around the table as equals, also in talk shows.




More pictures and paintings of Holland


  

 














November 3rd 2014 

My skin is still quite easily flushed and burned up. I try to avoid the worst temperature changes and keep the indoor heat around 17 degrees, with a fan on if needed. Seb derm has returned, as it does every fall/winter, and I'm having a rash on my forehead again, which is starting also on my inner cheeks. I received my pharmacies home made ketaconazole cream now, thankfully, and I hope I can limit the rashes that way. I also eat strictly healthy these days; no bad foods are allowed in the house lol, because my will power to resist them, once they are in the kitchen cupboards is close to zero. I eat a lot of pumpkin soup, as I get pumpkins all the time from friends with their own gardens, and also stir fries of vegetables and some sweet potato and organic beef or chicken. Lots of apples and pears in between meals or as breakfast/lunch even. I make smoothies from frozen mango pieces and banana, they are delicious but I have to keep them small, or I get a lot more red. It might be the high vitamin C levels in the mango, or the flushing trigger that is 
the banana. I've been in high irritation modus the past weeks :/ It might stem from my skin flaring and me having pain, or from feeling a bit down over the cold weather and feeling my restrictions from rosacea so heavily again. The more I go out and see people and do things and feel in charge of my life and have a cooperative skin, the better I feel and the more 'normal' too. Then when the control is gone again and I flare no matter what, it reminds me of the reality and I sink back in a limbo state of getting used to the restrictions again, of pepping myself up that this is not the end of the world. Fighting the gloom basically. That it will all get better again in the spring, as it usually does. There is always a bit of worry with me, that at some point, that might not happen.. and I might digress and worsen. When I feel like this, and feel antisocial, I notice I have a pretty short fuse in some situations :( I hate it, but it takes over sometimes. Especially when there are misunderstandings or when I am in a discussion about something with people, friends, family, and they don't understand things, or make wrong assumptions in a school master like tone, or give the impression they judge me for things or talk a bit condescending. When I feel good, I can make a joke about it or shrug my shoulders or just give opposite arguments and it stays all nice and civil but when I feel bad, and insecure in some ways, I can just act so easily annoyed. I find it hard to be the same person than in real life as in writing. Luckily these are only episodes and not an issue most of the time. But the world doesn't stop or take you into consideration when you happen to have a flare or a rough time, that much is clear! :) It was my birthday on Friday and I went out to  a chic buffet dinner. We had a good time with the 3 of us and I had thrown back an extra dose of Xyzal antihistamine and just feasted on lobster and shrimps and sushi and lamb cooked in milk and the best insane 20 meter set up of desserts. Anything you can think of, well anything European style, and it was there. No red velvet cake or whoopie pie as I think the US has, but let's say 20 types of chocolate cake, 20 types of other fruit cakes, sweets, fruits, dozens and dozens of types of small bakery sweets, tiramisu, custards, cheese cakes, chocolate fountain, all the ice cream flavors you can think of. I wished I could start with dessert and end with dessert haha but I'm an adult now :) 



Soooo .. I ate quite a lot  :) Although it wasn't even that much actually, as I have been on this healthy diet for a good while now and eat small portions, so I guess the stomach has shrunken in the process of all that and I felt really full fairly soon, which was a shame as these sort of Willy Wonka displays trigger the inner piglet in me. Skin was a bit red but not burning that night and the next day it was also a bit more red and swollen but nothing too bad and nothing a cold pack and fan couldn't deal with. I've also been out quite a few times the past weeks with my sister and some individual friends. We find that as everybody is so busy here and has such tight agenda's (things are planned well in advance in Holland! Busy busy busy), my girlfriends love it best when we meet at a restaurant in the evening and have all evening to chat and eat and they love leaving their sweet darling kids at home for an evening and not be disturbed. It is costly though, but I do love it. My sister commented actualy, how happy she is that we can do this now and how it seemed totally impossible back in 2005 that I would ever be able to go out to dinner with her. As the rosacea was so crippling bad back then. From how far we've come.. It is really nice that I can take my medication, drink iced water and get through the evening and my sister will update a lot automatically now, how calm my skin still looks when we are halfway the evening. Which is nice and I like that they all are so kind now about always asking me what restaurant to go to. My sister even said when we came in this tapas place; let's sit in the back so when you need your cold pack later on, you don't have to worry about people's stares. Was so nice to hear :)





November 4th 2014 

I read and saw this article, about people being photographed before and after their death. One man in it said: Heiner Schmitz saw the affected area on the MRI scan of his brain. He realized immediately that he didn’t have much time left. Schmitz is a fast talker, highly articulate, quick-witted, but not without depth. He works in advertising. Heiner’s friends don’t want him to be sad. They try to take his mind off things. At the hospice, they watch football with him just like they used to do. Beers, cigarettes, a bit of a party in the room. The girls from the agency bring him flowers. Many of them come in twos, because they don’t want to be alone with him. What do you talk about with someone who’s been sentenced to death? Some of them even say ‘get well soon’ as they’re leaving. ‘Hope you’re soon back on track, mate!’“No one asks me how I feel”, says Heiner Schmitz. “Because they’re all shit scared. I find it really upsetting the way they desperately avoid the subject, talking about all sorts of other things. Don’t they get it? I’m going to die! That’s all I think about, every second when I’m on my own.” It reminded me of my science teacher, Mr. Beerda. I can't recall anymore if I ever wrote you about this or not. In 2nd and 3rd class at Lyceum he taught us science and he was a bit of a strange man, very flamboyant and full of personality and he looked a bit like an odd version of Robert Redford. Very sharp witted on top. Then he got sick and after some months he was still not back and we learned he had cancer. I suggested we would write him a get better card with the whole class and I brought it to his place. He lived very close to where my house is now, but I didn't know that of course back then; lovely old light 30's house, very classy. I'd only known him as a stern teacher but he was really friendly and asked me in for some tea and we talked a bit, and I'm not sure anymore how it all happened but I did ask him things about his illness, prognosis, and his thoughts on death, and it was such an interesting afternoon. He said when I left, thanks for that, and if you feel like a chat, you can always come round. It was entirely 'correct', he just liked to be able to talk with a student on that level of things and I actually came over once in a while to ask how he was doing and an ex student of him lived in the house next door and when he had his last birthday party in the house, he asked me if I felt like helping out with that other ex student, it was nice. He talked about his thoughts on the universe and his ideas about other life forms or the soul  and it were like mini college tutorials almost, but in a conversation form, really special. Still fond of those moments because it gave me a warm feeling that age is not everything and that you can connect with someone despite rules of how things should be etc etc. Was very pure in a way and he had said the same thing as this man in the article; nobody ever sat down to ask him what he really felt and what his fears were and thoughts on what was coming very soon for him. He did die after a year or so, send me a thank you card for the special times.





November 7th 2014 

I've been a right grump to the people around me the past month and it was noticed, and addressed lol, so I have been consciously 'ungrumping' the past week and it's a strange feeling but I actually feel so mellowed down from it. I know that might sound very strange but it almost feels sometimes like I am in this maelstrom of negativity and I tend to blame it on the weather and my flushing of course or the cat or life in general or hormones, but I notice now that consciously trying to be mellow and sweet about whatever happens, does have a soothing, cumulative effect. It's almost like those Chinese people in parks who collectively and mechanically smile and laugh together for an hour as therapy form, and the body mistakes it for genuine laughing and makes the correct hormones. I am fooling my brain too now and it seems to adjust to it :) Gives a really good feeling because I don't want to be full of angst and grump. It's not my natural state and giving in to it isn't making me feel any better, but actually adds worries as I can go back and over and over situations with friends or family were I wasn't as patient and soft as I wanted to. We call it "Project Paloma", after one of Picasso's wives who dedicated all her years to serve her husband, create the right environment for him of peace and tranquility and cleanness so he could dedicate all his energy to making his last art works. It sounds really nice, Project Paloma I think, until I looked back the list of his wives and realized his last wife wasn't Paloma (she was his daughter in fact), but Jacqueline! Project Jacqueline doesn't sound quite as quirky so it will remain Paloma. All this makes that I feel a bit better even though the weather is ghastly cold and wet'ish and it has stirred my seb derm and flushing/redness up a lot. I chatted with a nice girl who has rosacea/seb derm too, she is a medical student and we share my seb derm cream as no pharmacist is able or willing to make it for her in the UK. She went through the same thing; her skin was fine during summer and now it is all red and hot and itchy with seb derm again. Discussed how we both think every single summer; it goes well, we will make sure there will NOT  be a relapse this time round in fall. But that is not really a conscious decision, just the cold dry air is enough for me to really look awfully red. I have a communal meal tomorrow, all sorts of chestnuts; roasted, pureed, boiled, in desert, and it is in some hall with bright fluorescent lighting. I think I will finally use the make up I bought. I'll make some before and after pictures to show the redness and then the effects of this make up and then see how long my skin will tolerate it and how long I can sit the meal out, and then make a picture of what my skin looks like after removal of the make up again. Bit nervous as the last time I used a mineral make up was about 2 years ago or something and it was like removing skin with sandpaper once I took it off (it burned my skin too when applied), and it took weeks for my skin to calm down again. However this one, from La Roche-Posay, is a creamy foundation and it covers the worst redness I think, very thick. I saw some nice dresses on the website of Top Shop but don't know to buy them yes or no. I don't have much cash so I better leave them be, as I just booked an appointment with Dr Chu in February, so I will need a lot of money for flights, hotel, private patient fee and the rest. But to give an impression of the 3 dresses, here they are.


I already have tons of dresses, here are a few of mine, I have about 60 more though :) I usually like the old looking ones. If I could I would dress in Victorian dresses all day but that is not very practical or affordable. So most are a bit 20's or 50's/60's style, or just anything frilly and romantic:





The thing is: I used to dress nicely before I got rosacea.. Really, make an effort to do my hair (and dye it in red or blonde or brown colors all the time), make up on, high heels, it was like dressing up as a young adult in a giddy way, really nice. But then after rosacea hit I just couldn't be bothered anymore... Preferred to just stay in comfy clothes, fleece shirts, PJ bottoms, hair wrapped up in some messy uncared bun, no make up of course as I wanted my skin to be at it's most calmest. Then the high heels turned out to be the culprit of ongoing headache from the neck to shoulders region and my physiotherapist told me to no longer wear them, so there went the last feminine thing I had stuck to. Now I really only dress up for the odd night out, which isn't that often, and certainly not to just go to the houses of friends. It's a bit   
saddening when I see them all nicely dressed up and fresh faced even in their every day house environment, but c'est la vie.. The dresses are there though, so at least I feel I can, if I really want to, dress up at the drop of a hat. Doesn't happen that often though :) This is a dress from Laura Ashley and most of her dresses are flowery and 80's style and baroque monstrosities haha, but I still like some of them. Bought a truckload of 'vintage' (aka: second hand, but that just doesn't sound quite as chic does it?) dresses from Ebay UK (thanks for the help H.) and this one I was really doubting about; I love the body part but the skirt.... aiii... a little bit too shiny and the color green is slightly off too. I didn't buy it but saw it returning on my screen the other night in a blog and now I regret it a little bit. Of course, where would I wear that dress to haha, I never go to any occassion where it would look not out of place. Maybe Halloween, but we don't celebrate that in Holland :) 



I bought this dress though, brand new and mine has a lovely sea blue/green color (not as bright blue as this one), a slightly different color and the neckline is a little bit lower, but for the rest it's the same, and I'll wear it at that dinner tonight.




Love/Hate
Am also watching this Irish series about the underworld, it's quite good so far, Aidan Giillen (aka Lord Baelish) plays in it and is chillingly good. And I watched a BBC series I loved, in 3 parts, about the life of Queen Victoria and Albert, they had 9 children and tried to portray the perfect tight nit family, to have the middle classes identify with them in a positive way and to try to halt revolution like it was roaring in Europe. But in fact she was a control freak and a pretty problematic mother and she and him were passionate but volatile and had the worst fights ever. Very nice to watch, but also slightly disturbing at times.. She was very bright and a great writer but also a control freak and if she wasn't happy, nobody could, if possible. There was something about her that I liked, despite her being portrayed and known as a ghastly mother at least half of the time. She was so honest in her letters and had such wit. There is something about miserable people and their gallows humor I like, or maybe just can relate to.. I understand how life can turn out the opposite of what you had in mind for it and how bitterness can creep up then. Also, I want a Teddy bear like Aloysius, from Brideshead Revisited, if you never saw that show you should, its lovely




November 9th 2014 

I posted a make up update in a separate thread. A few pics from that thread here:

Before



Halfway through applying



All on but it's a bit thick a layer..        



After removing the worst and applying a thin new wet layer



Getting it off again 5 hours later, first one cheek then both








November 14th 2014

See for more updates this blog postSkin has been flaring and burning all week :( It is cold here now, so I have no certainty whether the flare comes from the cold or the make-up trial. Hmmm :/ Feeling a bit down, tired, worn out from it all. I'm really done with the daily rosacea struggles. 








December 5th 2014 Things have normalized again with my skin. It took exactly 3 weeks for everything to return to normal. I can see that a normal layer of skin has restored itself over the cheeks, I really think the make up experiment itself went ok but that the removing of the make up and the scrubbing effect made my skin so red and frail. All of the top layer of dead skin cells was removed at once, I had the same thing happening after thoroughly cleaning my skin of any build up in the past. So now things are all good again and had a very good week actually, with calm skin. Woke up with pale skin, went out in the cold, it has been -1 here most of week!! All wrapped up in scarfs and a hoody and my skin still did fine. A bit rosy when out in the cold but no bad flushing or pain. Only this morning I have one red cheek again, from sleeping on the other cheek consistently (makes the upwards pointed cheek go red eventually), and I also forgot to take my clonidine at night, so am cooling with cold pack and fan again now. We are heading off to a theme park for 4 days with my mamma and her partner and my sister and nephew, so it's kind of bad timing, as I need to sit in the car for 3 hours soon, but well.



I read this from my favorite writer Dostojevski. It really touched me: The Day Dostoyevsky Discovered the Meaning of Life in a Dream - by Maria Popova “And it is so simple… You will instantly find how to live.” One November night in the 1870s, legendary Russian writer Fyodor Dostoyevsky(November 11, 1821–February 9, 1881) discovered the meaning of life in a dream — or, at least, the protagonist in his final short story did. The piece, which first appeared in the altogether revelatory A Writer’s Diary(public library) under the title “The Dream of a Queer Fellow” and was later published separately as The Dream of a Ridiculous Man, explores themes similar to those in Dostoyevsky’s 1864 novel Notes from the Underground, considered the first true existential novel. True to Stephen King’s assertion that “good fiction is the truth inside the lie,” the story sheds light on Dostoyevsky’s personal spiritual and philosophical bents with extraordinary clarity — perhaps more so than any of his other published works. The contemplation at its heart falls somewhere between Tolstoy’s tussle with the meaning of life and Philip K. Dick’s hallucinatory exegesis. The story begins with the narrator wandering the streets of St. Petersburg on “a gloomy night, the gloomiest night you can conceive,” dwelling on how others have ridiculed him all his life and slipping into nihilism with the “terrible anguish” of believing that nothing matters. He peers into the glum sky, gazes at a lone little star, and contemplates suicide; two months earlier, despite his destitution, he had bought an “excellent revolver” with the same intention, but the gun had remained in his drawer since. Suddenly, as he is staring at the star, a little girl of about eight, wearing ragged clothes and clearly in distress, grabs him by the arm and inarticulately begs his help. But the protagonist, disenchanted with life, shoos her away and returns to the squalid room he shares with a drunken old captain, furnished with “a sofa covered in American cloth, a table with some books, two chairs and an easy-chair, old, incredibly old, but still an easy-chair.”

As he sinks into the easy-chair to think about ending his life, he finds himself haunted by the image of the little girl, leading him to question his nihilistic disposition. Dostoyevsky writes: "I knew for certain that I would shoot myself that night, but how long I would sit by the table — that I did not know. I should certainly have shot myself, but for that little girl. You see: though it was all the same to me, I felt pain, for instance. If any one were to strike me, I should feel pain. Exactly the same in the moral sense: if anything very pitiful happened, I would feel pity, just as I did before everything in life became all the same to me. I had felt pity just before: surely, I would have helped a child without fail. Why did I not help the little girl, then? It was because of an idea that came into my mind then. When she was pulling at me and calling to me, suddenly a question arose before me, which I could not answer. The question was an idle one; but it made me angry. I was angry because of my conclusion, that if I had already made up my mind that I would put an end to myself to-night, then now more than ever before everything in the world should be all the same to me. Why was it that I felt it was not all the same to me, and pitied the little girl? I remember I pitied her very much: so much that I felt a pain that was even strange and incredible in my situation…It seemed clear that if I was a man and not a cipher yet, and until I was changed into a cipher, then I was alive and therefore could suffer, be angry and feel shame for my actions. Very well. But if I were to kill myself, for instance, in two hours from now, what is the girl to me, and what have I to do with shame or with anything on earth? I am going to be a cipher, an absolute zero. Could my consciousness that I would soon absolutely cease to exist, and that therefore nothing would exist, have not the least influence on my feeling of pity for the girl or on my sense of shame for the vileness I had committed?" From the moral, he veers into the existential: "It became clear to me that life and the world, as it were, depended upon me. I might even say that the world had existed for me alone. I should shoot myself, and then there would be no world at all, for me at least. Not to mention that perhaps there will really be nothing for any one after me, and the whole world, as soon as my consciousness is extinguished, will also be extinguished like a phantom, as part of my consciousness only, and be utterly abolished, since perhaps all this world and all these men are myself alone." Beholding “these new, thronging questions,” he plunges into a contemplation ofwhat free will really means. In a passage that calls to mind John Cage’s famous aphorism on the meaning of life — “No why. Just here.” — and George Lucas’s assertion that “life is beyond reason,” Dostoyevsky suggests through his protagonist that what gives meaning to life is life itself: "One strange consideration suddenly presented itself to me. If I had previously lived on the moon or in Mars, and I had there been dishonored and disgraced so utterly that one can only imagine it sometimes in a dream or a nightmare, and if I afterwards found myself on earth and still preserved a consciousness of what I had done on the other planet, and if I knew besides that I would never by any chance return, then, if I were to look at the moon from the earth — would it be all the same to me or not? Would I feel any shame for my action or not? The questions were idle and useless, for the revolver was already lying before me, and I knew with all my being that this thing would happen for certain: but the questions excited me to rage. I could not die now, without having solved this first. In a word, that little girl saved me, for my questions made me postpone pulling the trigger."

Just as he ponders this, the protagonist slips into sleep in the easy-chair, but it’s a sleep that has the quality of wakeful dreaming. In one of many wonderful semi-asides, Dostoyevsky peers at the eternal question of why we have dreams: "Dreams are extraordinarily strange. One thing appears with terrifying clarity, with the details finely set like jewels, while you leap over another, as though you did not notice it at all — space and time, for instance. It seems that dreams are the work not of mind but of desire, not of the head but of the heart… In a dream things quite incomprehensible come to pass. For instance, my brother died five years ago. Sometimes I see him in a dream: he takes part in my affairs, and we are very excited, while I, all the time my dream goes on, know and remember perfectly that my brother is dead and buried. Why am I not surprised that he, though dead, is still near me and busied about me? Why does my mind allow all that? In this strange state, the protagonist dreams that he takes his revolver and points it at his heart — not his head, where he had originally intended to shoot himself. After waiting a second or two, his dream-self pulls the trigger quickly. Then something remarkable happens: I felt no pain, but it seemed to me that with the report, everything in me was convulsed, and everything suddenly extinguished. It was terribly black all about me. I became as though blind and numb, and I lay on my back on something hard. I could see nothing, neither could I make any sound. People were walking and making a noise about me: the captain’s bass voice, the landlady’s screams… Suddenly there was a break. I am being carried in a closed coffin. I feel the coffin swinging and I think about that, and suddenly for the first time the idea strikes me that I am dead, quite dead. I know it and do not doubt it; I cannot see nor move, yet at the same time I feel and think. But I am soon reconciled to that, and as usual in a dream I accept the reality without a question. Now I am being buried in the earth. Every one leaves me and I am alone, quite alone. I do not stir… I lay there and — strange to say — I expected nothing, accepting without question that a dead man has nothing to expect. But it was damp. I do not know how long passed — an hour, a few days, or many days. Suddenly, on my left eye which was closed, a drop of water fell, which had leaked through the top of the grave. In a minute fell another, then a third, and so on, every minute. Suddenly, deep indignation kindled in my heart and suddenly in my heart I felt physical pain. ‘It’s my wound,’ I thought. ‘It’s where I shot myself. The bullet is there.’ And all the while the water dripped straight on to my closed eye. Suddenly, I cried out, not with a voice, for I was motionless, but with all my being, to the arbiter of all that was being done to me. “Whosoever thou art, if thou art, and if there exists a purpose more intelligent than the things which are now taking place, let it be present here also. But if thou dost take vengeance upon me for my foolish suicide, then know, by the indecency and absurdity of further existence, that no torture whatever that may befall me, can ever be compared to the contempt which I will silently feel, even through millions of years of martyrdom.” I cried out and was silent. Deep silence lasted a whole minute. One more drop even fell. But I knew and believed, infinitely and steadfastly, that in a moment everything would infallibly change. Suddenly, my grave opened. I do not know whether it had been uncovered and opened, but I was taken by some dark being unknown to me, and we found ourselves in space. Suddenly, I saw. It was deep night; never, never had such darkness been! We were borne through space and were already far from the earth. I asked nothing of him who led me. I was proud and waited. I assured myself that I was not afraid, and my heart melted with rapture at the thought that I was not afraid. I do not remember how long we rushed through space, and I cannot imagine it. It happened as always in a dream when you leap over space and time and the laws of life and mind, and you stop only there where your heart delights.

Through the thick darkness, he sees a star — the same little star he had seen before shooing the girl away. As the dream continues, the protagonist describes a sort of transcendence akin to what is experienced during psychedelic drug trips or in deep meditation states: Suddenly a familiar yet most overwhelming emotion shook me through. I saw our sun. I knew that it could not be our sun, which had begotten our earth, and that we were an infinite distance away, but somehow all through me I recognized that it was exactly the same sun as ours, its copy and double. A sweet and moving delight echoed rapturously through my soul. The dear power of light, of that same light which had given me birth, touched my heart and revived it, and I felt life, the old life, for the first time since my death. He finds himself in another world, Earthlike in every respect, except “everything seemed to be bright with holiday, with a great and sacred triumph, finally achieved” — a world populated by “children of the sun,” happy people whose eyes “shone with a bright radiance” and whose faces “gleamed with wisdom, and with a certain consciousness, consummated in tranquility.” The protagonist exclaims: Oh, instantly, at the first glimpse of their faces I understood everything, everything! Conceding that “it was only a dream,” he nonetheless asserts that “the sensation of the love of those beautiful and innocent people” was very much real and something he carried into wakeful life on Earth. Awaking in his easy-chair at dawn, he exclaims anew with rekindled gratitude for life: Oh, now — life, life! I lifted my hands and called upon the eternal truth, not called, but wept. Rapture, ineffable rapture exalted all my being. Yes, to live… Dostoyevsky concludes with his protagonist’s reflection on the shared essence of life, our common conquest of happiness and kindness: All are tending to one and the same goal, at least all aspire to the same goal, from the wise man to the lowest murderer, but only by different ways. It is an old truth, but there is this new in it: I cannot go far astray. I saw the truth. I saw and know that men could be beautiful and happy, without losing the capacity to live upon the earth. I will not, I cannot believe that evil is the normal condition of men… I saw the truth, I did not invent it with my mind. I saw, saw, and her living image filled my soul for ever. I saw her in such consummate perfection that I cannot possibly believe that she was not among men. How can I then go astray? … The living image of what I saw will be with me always, and will correct and guide me always. Oh, I am strong and fresh, I can go on, go on, even for a thousand years. [...] And it is so simple… The one thing is — love thy neighbor as thyself — that is the one thing. That is all, nothing else is needed. You will instantly find how to live. A century later, Jack Kerouac would echo this in his own magnificent meditation on kindness and the “Golden Eternity.”





November 18th 2014

I received some nice tips from a rosacea friend of mine: "Dear Nattie, Yes, read and saw your makeup experiment. Was very proud of Your courage to try something new. I'm looking for a new makeup. So I will give it a go. Taking off makeup is one of my biggest challenges. Three suggestions: bio derma micelee sp ( sp?) cleanser. Looks like Water. No odor. Soft brush of cotton pad brings it all off. Avene gentle Eye makeup remover. I use it on my skin as well. Wash it in with my hands And spray off with Avene water.  Last, microfiber towels that are so delicate Only need water to remove makeup. I just bought one yesterday. So I can't Tell you how it does only that reviews are great.  It is the seb derm that Gets most aggravated for me as it loves to eat oils so I'm hoping this Microfiber towel, working with water works. Let you know. Don't get Discouraged. Sounds like you have made some progress. You Did not mention diet. Still on it?  Cuz your skin looks very nice." I am really curious how she will do with those make up removal tips, might try them myself. After a week of increased redness and flushing, my skin seems to normalize again on the one week brink. I can also see that there is more of a natural looking epidermis cell build up again by now, so my guess is that it was mainly the removal of the make up, stripping my little collection of protective dead skin cell build up on the top (and I don't mean the excessive type which I pictured some time ago and which looks gross and unnatural, but the type that still looks like a more normal colored upper skin layer) that caused the flare up. Still, a full week of misery over one night of pretty make up'ed skin is a heavy price to pay for me, so I don't think I will wear the make up structurally, but I still am happy with the results, and to know it is there for something really important or special where I have to go for some reason and will be facing people I don't want to feel vulnerable and red and ugly with.


   


My dear friend B linked me to this nice piece of art. I think they will call it deconstructivism; you take apart all sorts of elements and put them back together for some order, but in this case the artist made a very surreal construction of loose elements, forming together and majestic face :)








A New Barbie Is On The Market Who Can Get Acne, Stretchmarks And Even Red Cheeks:

 “Normal Barbie” Has Realistic 19-Year-Old Body Shape With Acne, Bruises And Stretch Marks. 
The iconic Barbie doll has received a lot of criticism for teaching kids to aspire to unrealistic body types, so digital artist and design Nickolay Lamm decided to create “normal barbie” named Lammily. This doll has the realistic body proportions of a 19-year-old girl, and can have tattoos, warts, acne, stretchmarks, and other realistic skin flaws. A sticker pack that comes with the doll allows kids to apply all the sorts of skin imperfections that real people have, teaching kids that they don’t have to aspire to or value the unrealistic body images promoted by Barbie or Ken dolls. And, judging by the reactions of the 2nd-graders Lamm showed his doll to, the message has been received with open arms! Lamm told Huffpost that he “wanted to show that average is beautiful and that we shouldn’t compare ourselves to unrealistic beauty standards. And I feel Barbie kind of symbolizes that.” “Normal Barbie” has the average body shape of a 19-year-old girl. I must say that the idea is interesting, but the execution still a bit... crude. Looks more like a parody doll right now :) But hey, I'm an adult so my opinion isn't that very relevant here. 

Just like a real girl, she can get acne, bruises, and other body marks, all included in Lammily’s sticker pack

Lammily with some stretch mark stickers on her belly

“Normal Barbie” with a cellulite sticker on her leg

Lammily Barbie with freckle stickers on her cheeks

Lammily blushes when she’s been caught eating all the cookies

A pack of Lammily Marks

Compare the traditional Barbie doll on the left to Lamm’s first realistically proportioned doll model on the right

Watch the beautiful reactions of 2nd-graders meeting Lammily for the first time:







November 24th 2014 

Things are still not going well. I've been having burning pain, flushing and redness basically for the past 2 weeks. Although before the make up trial I had a bit of a rough time as well, but not at this scale. I don't know if this flare is the result of the cold weather, of my seb derm flaring, the make-up giving some sort of delayed skin reaction, no more sun bathing nor vitamin D production, all of the above or something else. But I've woken up flushed and burning almost every morning the past 2 weeks, and have not been able to cool matters down as normally is the case. I think my cheeks look really rough and inflamed, they have a rough texture and I have had that happening before actually. Two years ago round the same time of year, then triggered by splashing jojoba oil all over my face (my cheeks seem too sensitive to tolerate anything, I can use the jojoba fine around my jaws, on the chin and nose and forehead and right around my eyes). I went to my German dermatologist with it back then, thinking it was some sort of eczema rash but he said it was a rosacea flare and to let it run its course and keep taking my anti flushing meds. It died down after some weeks then. I hope the same will happen this time, but my mood has really made a huge tumble downwards. I feel so low, so incapable of doing anything apart from complaining about it to a couple online friends with rosacea and sitting my time out, trying to do some work while I'm at it. But all I can do is sit behind the fan with cold packs nearby, even the pocket mirror has come out again, I can't remember the last time I had the urge to use it... Oh that must have been 2 years ago actually, when I sat in the derms waiting room with the same bad skin. I try to go out for my walks but everything makes me blow up, rosacea wise, now. I've been listening an audiobook though while out there, Child 44, its great! Bit of a thriller but set in the former Soviet Union and its about an MGB agent who goes after a fugitive spy (I'm only at the 5th chapter so this summary might be very off) but you see in the minds of both him, the fugitive and others and it gives such a good impression of how everybody was guilty back then unless proven otherwise. It's really great and makes me forget things for a bit. But all in all I feel dark thoughts coming back :( I already struggle with keeping up some sort of a social life, apart from maybe a handful of months a year when my rosacea does ok and I go out to catch up again, full of life and energy again then. But when I'm so flushed and I look like a swollen gremlin like now, I cancel everything, avoid almost everyone. I feel a failure, feel unloved, like I am dragging the people around me down and that results often in me dragging up topics like "Do you still love me", 'Don't you also think that X or Y looks way nicer than me", "Why do you even want to be around me, when all I do is be occupied with my health all day", "Didn't we have a lot more fun and good times a few years ago" etc. He just wants us to have less arguments and for me, his high irritation level and general independent sailing through life make me feel less loved or needed or appreciated even. Just a big disappointment and failure and waste of energy for everyone around me. In emails I can keep the good pretense up and sound more confident still, but everything is getting me down so much right now that I even refrain from writing them to people at the moment. Just try to work a bit and lay on the couch with fan on and wrapped in a blanket all night watching Lena Dunhams serie Girls and another nice series, The Knick, about a New York fictitious hospital The Knickerbocker at the start of the 20th century. The top surgeon, played by Clive Owen (delicious and great actor here!), is based on a real historical figure. These pics are from today and after cooling my face for hours, best moment of the day and it looked more red than the camera seems to show, and also burns a lot more than it normally does when my skin is only this shade of red. At night it's bright red again, like now :(



Then again, this was my skin a week ago, it seems to have calmed down a little bit at least, although it still feels as much on fire and painful (sorry for the poor quality pictures, not my own camera):


I read some articles on chronic pain, illness and depression and suicide. This blog post has good things to say, the intro was very recognizable for me: "Everyone who lives with a long-term illness thinks about suicide at some time during that illness. My hunch is that these emotions usually come early in the disease, during the first struggles with the reality of chronic illness. The second most common occurrence of those sentiments comes, I think, at times of crisis in the disease, at times of reversals."





This blog post from a blogger with chronic nerve pain really touched me and I recognized things in it. Her whole blog is amazing.

Then Everything Changed
Warning: This is a candid piece about a difficult subject.  Please understand I am not advocating suicide nor is this a cry for help.  I’m encouraging understanding and compassion.
The chronically ill suffer from severe depression, grief, loss, and a high suicide rate, but these symptoms are rarely openly discussed.  Today, however, I will brave speaking candidly about the topic that is so much easier to ignore.  We all know it is there, but neither the chronically ill, nor the healthy want to acknowledge the elephant in the room hogging the sofa and the remote.  Why?  Simple, the hard truths everyone would have to acknowledge are more terrifying than an IRS audit on infinite loop.  Even at this moment many would rather suffer through its poor taste in TV shows than read on and acknowledge this particular elephant.
Elephant-in-the-room
Well, I’ve never really been one to go with the flow.  We need to drag the subject out into the sun, take a good hard look and have an honest discussion.   The hiding and dodging may be more comfortable for some, but it is doing damage of its own.  By ignoring it you not only make it  bigger and scarier, but it also makes the one suffering feel even more isolated.  It is better to be direct and honest.  It is a brave soul that opens a door to a very private part of life and lets other people in.  So, take a good deep breath, steady your heart and quiet your mind.  I am not only going to venture into this taboo subject, I am going to share my personal experience.

I sympathize completely.
The mental deterioration due to my illness is a part of me, my experience, and thought process that I rarely speak of because it makes the people around me terribly uncomfortable.  Right there, my usual silence is a demonstration of how society makes surviving this side of chronic illness one of the hardest obstacles to overcome.  In the medical community it is so well known that chronic pain and illness have such a high rate of depression and suicide that many doctors will make sure their patients have a counselor and was on antidepressants.  Doctors are well aware, but society doesn’t fully realize the impact chronic pain and illness has on the mental state of the sufferer.
Today the two paths become one.
Today the two paths become one.
When my body first began its rapid slide to the current disaster I approached it like everyone else; go to the doctor, find the problem, and fix it.  Obviously, right?  Well, as the months started to turn into years and the pain and misery weren’t abating, in fact, they were increasing, my thought process began to diverge from those who surrounded me.  I did go to the doctor, many doctors actually, many times, but that is where my original plan failed.  The pain was from nerve damage, but that was where the understanding of my situation stopped.  My body kept adding more and more disparate symptoms and the doctors seemed to get less and less understanding of my situation.  As the confusion regarding my illness increased so did my pain and with each failed attempt at managing the pain or finding a diagnosis, my hopelessness soared.
pain - real pain scale
At first I felt adrift, disconnected from everyone and everything.  The days blurred and what was once important no longer seemed real.  I knew I was a part of the world, but it felt more like I was watching it from afar.  The life I had seemed so long ago and so far away.  I would never live that life of adventure and accomplishment again and I grieved that loss terribly every second of every day. My days now consisted of lying in bed using ice, heat, medication, stretches, the fetal position, anything and everything I could think of to lessen the pain.  I would have turned cartwheels in a clown suit if I thought it would help.  Being pain free was unimaginable in my current state, I just wanted it to decrease enough so I could take a breath.  All I wanted was a little relief, just a tiny bit, just an hour, or even a minute, whatever life could find it in its heart to grant me.  The only real relief I knew was sleep and the first thing that goes with chronic pain is (drum roll) sleep.  Even when I was granted short stints of sweet sleep I was told by others that I moaned and even cried in my sleep.  My conscious mind got some relief, but my body’s pain continued.
There was no escaping the pain.
There was no escaping the pain.
After months of this, day in and day out with no possibilities of relief my heart and mind came together on one thing: what I was not living, I was just surviving.  If I was staring down day after day, year after year of so much agonizing pain that I had no room for any quality of life I knew that this fight was a losing one and there was another option. Suicide is usually associated with anger.  Most of the time someone reaches a very dark place in their lives and kills themselves with some variation on the thought of, “they’ll be sorry,” or “I’ll show them.”  It is often a permanent solution to a temporary problem.  However, in some cases, there is no anger involved.  I believed that my situation was permanent and realistically there wasn’t any reason to believe otherwise.  I was in so much pain physically and mentally that I couldn’t survive a life time of this level of suffering.  As far as I was concerned death would be a relief, it would be an end to this awful pain.    I was only in my twenties and my body had forced me to face my own mortality, and you know what?  I was okay with it.  I was ready to go.  I wasn’t angry.  I wasn’t kicking and screaming and gnashing my teeth.  As far as I was concerned it was my path to peace.  The only problem was my loved ones.
holding on is harder
I spent several months having subtle and not so subtle conversations with those I loved. I was trying to help them realize what a kindness it would be to let me go.  That if they could find it in their hearts to understand the agony I suffered by living then they would want me to find relief.  By the time I reached this point the only reason I was still alive was for the people I loved.  I needed to know that they would be alright without me.  At the same time I resented them for forcing me to continue to suffer.  Some people understood and told me as much, to this day I am grateful for their selflessness.  I know what that cost them to say and what they were prepared to endure for me.  The people who refused to release me, on some level, though I understand their point, I resented it. They really had no clue how much pain I was suffering and in turn what they were asking of me.  In this instance, to me, encouraging me to live felt like cruel and unusual punishment. Being alive and living are two different things.
Physical pain is lonely, the depression was excruciating.
Chronic physical pain is lonely and painful in more ways than one.
Some states allow euthanasia for those with terminal illness.  I have seen pictures and read stories of people attending their own wakes and the next day dying peacefully and comfortably in a bed surrounded by loved ones.  I believe people should have the right to choose whether they live or die.  Even before my body turned on me I believed that people with terminal illnesses should have a choice.  Suicide for people like that is not anger; it is because their suffering is too great.  Regardless of how the pain presents, you just don’t know what someone else is experiencing.  What everyone needs is an honest discussion based in understanding and compassion. Still from personal experience of grief I knew it was those left behind that really carried the burden.  No matter how I suffered I knew if I died there were some people I would take with me.  So I lived on in anger and resentment. That is, when I wasn’t too busy trying not to scream from the pain.  My mental state just continued to deteriorate, many of my relationships suffered, and still I kept on keeping on.  Living for others is no life at all.  I have never been so angry in my life.  Which didn’t help the situation at all. If you look at it honestly we were all being selfish.  I wanted my pain to end and they didn’t want theirs to begin.  I get it, I do, but I don’t think that understanding goes both ways.  I doubt many people understood my side. Many felt they knew what was best for me and living was it regardless of what that life looked like.  I, on the other hand, had a drastically different opinion on the matter.  I believed and still do, that it is not the quantity of life that matters, it’s the quality. That experience will forever make me mindful of what I ask of others.  It has allowed me a lot kindness when it comes to understanding other people’s choices.  It gave me a depth and breadth of understanding and compassion for which I am grateful, but I still think the price of admission was too high.
Unintended consequences still have a cost.
Unintended consequences still have a cost.
I was lucky, not too many months later I found a new doctor that offered me the peripherally implanted spinal stimulator, a treatment that I have no doubt saved my life.  Even for those I loved I could not have survived long in that much pain.  While the stimulator didn’t take away all my pain it was that modicum of relief that I needed to begin to function again.  I am nowhere near my old life, but I have found small ways to pull enough pieces together so I can feel human again.  It isn’t perfect, far from it, but I’m still finding new ways each day that make it worthwhile to wake up the next.  That doesn’t mean I don’t still have bad days, or I don’t still struggle, I do, but right now I know how to hang on and find the next good thing that makes life worth living.
Hanging on, even if it's by a thread, still keeps you in the game.
Hanging on, even if it’s by a thread, still keeps you in the game.
Depression and suicide are as much a part of chronic illness as all the other symptoms.  The problem is that as a society we ignore and avoid it.  Unfortunately this leaves the chronically ill alone to cope with some pretty strong demons.  I believe if someone had sat me down for a non-judgmental discussion it would have lightened that load.  This may seem like a terrifying discussion, but talking about it doesn’t give them any ideas.  These thoughts have been bouncing around in their brains relentlessly for ages.  Instead you now have the opportunity to offer some different perspectives or get them help if they don’t already have it.  Just remember to lead with compassion and understanding; these thoughts aren’t because of you.  Chances are, like me, they are holding on for you and offering your ear and shoulder will have profound meaning to them.
family





Update December 5th 2014
Things have normalized again with my skin. It took exactly 3 weeks for everything to return to normal. I can see that a normal layer of skin has restored itself over the cheeks, I really think the make up experiment itself went ok but that the removing of the make up and the scrubbing effect made my skin so red and frail. All of the top layer of dead skin cells was removed at once, I had the same thing happening after thoroughly cleaning my skin of any build up in the past. So now things are all good again and had a very good week actually, with calm skin. Woke up with pale skin, went out in the cold, it has been -1 here most of week!! All wrapped up in scarfs and a hoody and my skin still did fine. A bit rosy when out in the cold but no bad flushing or pain. Only this morning I have one red cheek again, from sleeping on the other cheek consistently (makes the upwards pointed cheek go red eventually), and I also forgot to take my clonidine at night, so am cooling with cold pack and fan again now. We are heading off to a theme park for 4 days with my mamma and her partner and my sister and nephew, so it's kind of bad timing, as I need to sit in the car for 3 hours soon, but well.



I will update a bit more soon and also am working on making selections of pictures I took over the years, adding some here to show per year how winter affected my rosacea. 
My dad also brought an old family album over last night with pictures he took of my mum and himself before they had me and a few after, I loved them! Not sure if they mean anything to people who don't know them but I'll share a few anyway, a testimonial of the late 70's and I think my mum looked really stylish too in them :) Click the play button on this grey video screen and it will run. 












We are with the family in a theme park at the moment, my mum rented it for a couple of days because of her 60th birthday. It's lovely but so hot inside. We switched the heating off as everybody but my sister, who is usually cold, felt too hot but it's 5 hours later now, with one kitchen window open, and it's still hot inside. I think at least 24 degrees. I have the fan on a chair nearby but this place has no freezer, so I had to walk to the reception to ask them to store my 2 cold packs please if possible. The did, but the place closes at night so the earliest I can pick them up again is tomorrow morning. I don't want to sit upstairs in the cold bedroom, instead join the rest downstairs, but my face is flaring and burning and red, despite the fan. Everybody also brought bags of nice food, I really tried to be disciplined and made myself some chicken and lentils and olives and carrot. Left the erwtensoep (typical Dutch lovely soup from green peas) for what it was, also the nice breads and chocolates, but it's hard. When I am already flushed I get this "what the heck" thought often, just stuff my face with something nice like chocolate, as I'm already red anyway. Trying not to do that tonight. Tomorrow we will visit the theme park, it's cold outside, around 5 degrees I think, so that is good, but this morning I needed at least an hour with fan and coldpack before I got my one sided flush down. I feel a bit restless, it's fun and lovely to be together but I always feel such a weirdo when out of my comfort zone, when I notice I still flush so quickly and often from ordinary things in ordinary life. Whereas in my own place, I have the temperature just right, all the stuff I need to stay comfortable, no bad foods in the house to be tempted by. It just feels more safe and relaxing. And I can even convince myself for some brief moments that I can just roll with the rest of humanity in normal life activities. The past week my skin was very calm so I could visit, stay for dinner, have a drink in the pub. Just now, it's back to square one. Oh and my mum brought her dog. I am allergic. That isn't helping either...











Update December 6th 2014

Having a real blast this weekend :) The weather was gorgeous today. I woke up with one cheeks flushed and then my nephew came in the bedroom with his (empty) steroid inhaler for his asthma and he was playing "Doctor Tim" with it, but please not with anything that contains steroids!!! My sister whisked him out quickly, phew. In the theme park we had a great time, we have a free pass to walk in and out during the weekend, as we rent a house on the estate. We did a lot of things for little Tim, fairy tale forest, carousels, dream flight, where you go in a little carriage through fairy tale scenes. But after lunch at home we went back with just a few adults and my mum baby sitting nephew and we could go loose on the roller coasters. We made a few video's,  I uploaded them here. Apologies for the ridiculous high pitched creaming but the thing reallly went extremely fast, we all had a massive adrenaline rush and went in a couple of times in a row. More of that tomorrow :)


















I also had a bath, first time in many years, had to put a fan on a chair though :) Make sure it was well clear from water reach, and to prevent any unfortunate accidents. I still got flushed, am pretty red and on fire now, but already was from the food here (chocolate, cakes, mums dinners), and the dog being here in the room all the time.. Enjoying it here but am also longing for my own house again, with cool temperatures, healthy food etc,. Skin is getting more red by the day :/ I think my sister and I sound like a mix of screaming chickens there, in the first video :) I got such an adrenaline rush there; the thing went so bloody hard and fast, I couldn't believe it. Children above 1:20 meters were allowed in and they were actually enjoying it! We went in 3 times in a row, totally hyped up, running round to go back in line. I think they should put depressed people in there, make sure they are safely strapped, it makes you so happy! And going in at night like we do is even better than in day light. My sister was down and tired from nephew being a slightly little (but ĂĽĂĽĂĽber cute) monster today, but I convinced her to go back to the park anyway later in the day, mum baby sitted, and she was beaming afterwards; we were ecstatic. It's such good therapy, I need one in my back garden :) We also have a roller coaster called Python on the park which goes through 4 loopings, but.... it is short and I noticed that this one I videoed gives you much more adrenaline as it goes faster and has a lot of drop downs so you feel it much more in your stomach than just going through a looping. I mean they're both great but I'd be most interested in the ones with the most of that effect; very high drops and speed. We felt like we were lifted and flying half of the ride, so fast and such drops in height :) 


My skin currently (tonight versus last week - last picture)




December 11th 2014
In school we all had to do a presentation during English about some topic, I chose the golden ratio for mine, and such mathematical measurements versus timeless beauty. It's a theory. The more symmetrical, the more we deem it as beautiful and there is mask model (see pic) which you can put on any frontal face picture and it will tell you exactly how beautiful someone is in our human eyes (or should I say; in the eyes of the developer of the mask, Marquardt). Taken aside people with weird personal preferences and fetishes. It takes into account that some might have full lips and other small, it is all about the proportions and balance of the features. I like natural beauty and the golden ratio is a nice idea but it isn't perfection persé and neither a proven theory. There's a certain je ne sais quoi or however that's spelt that comes into play too. The golden ratio in itself isn't so much an idea, I mean it is a concept of course, but it is science; so many things in this world are constructed by the golden ratio measurements; even your own body goes by its dimensions. The length of the arms and legs compared to the torso for instance. The formula is: A + B, divided by A = A divided by B. In most cases this results in the ratio 1: 1,618, which is a proportion you see back in nature as well. If the length of your hand has the value 1, then the combined length of your forearm and hand has the approximate value of 1,618. The same goes for the proportion of the upper arm plus hand + forearm. If the foot is 1, then the shin is 1,618. The face is full of golden ratio divisions. In nature the same ratio goes for branches, leafs and so on. It is like one of the measurement building blocks of nature. But it is not certain if that golden ratio also applies to facial features. This scientist thinks it is and that we psychologically, unconsciously notice it in our brains, which are programmed to look for symmetry and balance. Even very small babies were tested and measured how much longer they looked at a face which is within the good symmetry and balanced facial features and a less attractive face; they look considerably longer to the symmetrical ones, also the ones we here deem pretty. They laughed more and longer to pretty faces and looked away sooner from less 'pretty' faces if given the choice (and when they both have the same facial expression of course; no fair test if one gives a scary look and the other one looks warm and pleasant).

But there are little special things in some peoples faces that make them unique and different and which might not make the perfect 1: 1,618 proportion but still give a unique beauty. Also, the thing we consider beauty differs widely per region and culture, and is also based on the facial structures available and around somewhere. The golden ratio thing is not a universal law however, it is just an idea. Euclid who allegedly came up with it didn't attach any mystical or universal meaning to it, it's been argued about ever since but a lot of the things supposedly it was used for weren't. Like the Parthenon for instance. It's pseudo-science. I haven't done the research myself but I admit, but it is an intriguing theory to me. I've been reading this just yet:

1.Does the human face reflect golden ratios in its proportions?
"Not everyone will agree, but there is much evidence to demonstrate that the answer is “Yes.” First, let’s acknowledge that every human face has unique measurements and proportions. As a result no single measure can be said to apply to every face. The real question is whether the golden ratio represents an average or ideal in human facial dimensions. The even more interesting question is whether golden ratios in facial features impact our perceptions of attractiveness and beauty. Debunkers will point out the variations, and perhaps suggest that those who find golden ratios in a beautiful face did so because they were looking for them. Consider the following studies though, which demonstrate that the connection to beauty is based on much more than looking for data to fit the desired result: Dr. Stephen Marquardt, a maxillofacial surgeon and recognized expert on beauty, studied hundreds of faces in research on attractiveness to develop his patented “beauty mask.” The mask identifies archetypes for the faces perceived as most beautiful. The mask is based on dodecagons, which are based on golden ratios. Below is an example of a face that has been morphed to fit the beauty mask. Make your own assessment and see the YouTube  video of the step-by-step transformation or click.


In 2009, a university study identified ideal facial proportions, as selected by study participants who chose the most attractive face from a series of photos. The researchers were not looking for the golden ratio. To the contrary, they concluded that it didn’t exist and announced their own two “new golden ratios” of attractiveness. My subsequent analysis, however, shows that their ideal facial features reveal a dozen golden ratios, in both horizontal and vertical dimensions of key facial markers. In 2012, a UK cosmetic company ran a competition to find Britain’s most perfect face. The winner was selected from 8,000 contestants. Her face shows almost two dozen golden ratios in both the horizontal and vertical dimensions of key facial markers, as shown in an accompanying YouTube video to the article." He then goes on to 9 more points and debunks them or confirms them, it's a nice read actually. He concludes:


Is the golden ratio unique and special, or a myth to be debunked?
"It quite definitely a special number with unique properties and it is found in nature, in some quite unexpected places. Even those whose goal is to debunk golden ratio myth will agree that the golden ratio has properties that make it very unique in mathematics and geometry. This one number has intrigued and inspired countless people throughout mankind’s history, and earned a special place in their hearts and minds. It is probably for that very reason that some people have taken it beyond fact to fantasy and mysticism. That, in turn, has led others to summarily dismiss it with just as much zeal. Both extremes in position are flawed and keep us from knowing the truth and applying it. Is the golden ratio a universal constant of design in nature? No. Must all features of a face be in perfect golden ratio proportion to be beautiful? No. Can it help us to better understand and appreciate beauty in nature, and apply it in our own lives? Yes. Is the golden ratio required to create great art? No. Can it help to better appreciate some great art and to create with better composition and design? Yes. It’s used for that purpose in art, photo cropping and composition, logo design, product design and other areas of design. Like many things in life, it provides us with insight into the nature of things, the opportunity to better appreciate them, and the ability to use them to advantage. With all the misinformation and misconceptions that exist, it is best to keep an open mind, and not accept claims made without investigating evidence on both sides, experimenting on your own and coming to your own conclusions." I'm not convinced yet that there isn't something deep inside the human brain that has a preference to some type of facial or body proportion.. I would like to see that in a research, a documentary :) For instance, I remember from that school project that they investigated whether the hour glass body shape is culturally preferred all over the world and at the time they said it is. Not so much slim, voluptuous or fat, that can all differ per region and culture, but even the cultures who find fat women most attractive still preferred the fat bodies with an hour glass shape. Over, let's say, straight bodies with no curves. And the theory is that the right ratio or fat distribution and hip/waist/chest proportion equals higher fertility to our brains, and should therefore appear more attractive. They tested it and it was like that. But on average, not as a 100% fitting rule, there will always be people who like the opposite of the norm, for all sorts of reasons. But maybe they came back on those study results by now, it all dates from what I read in the mid 1990's. 

But if that is true then perhaps we also have a general preference for a certain proportion in the face. Maybe not. How many tribes would prefer a female face with a mighty big nose and a very small mouth, over a relatively smaller nose and fuller mouth, IF they had both type of women in their surroundings? I'm not sure, but it would be interesting to go to all these different cultures and tribes and get an idea first what they find beautiful in a person's face and then find such examples but some within the golden ratio rules and another one outside of it and let them chose. Just to test it. I would be surprised if they preferred an out of proportion face with bad symmetry, if given the choice. It's no absolute law, I don't think that because there will always be people who think different and who have very individual tastes and who like a totally different sort of face. It's not one rule fits all, but I mean more; would it be a thing that applies to a majority of people, yes or no? I would be surprised if we went to that little village in Congo and see the local women and girls and ask them who they deem the most beautiful face wise, and they pointed at the one with the least symmetry in the face. It might be! It would be fascinating and surprising to me. And I wonder if it could be that there is a pattern in what different cultures deem pretty, apart from changing characteristics (one culture likes full lips the other small, big noses versus small, all that will differ but how do their prettiest women compare to those considered least pretty in terms of golden ratio?). It's definitely not uniform, but within the choice of female faces they have, could we as outsiders predict which ones are considered most desirable yes or no? Perhaps, perhaps not. The mask also got a lot of criticism, for instance that it is mostly adapted for a western European face, and is kind of manly even in the outer outlines. But it does fit Marilyn Monroes face, one of the most feminine ones that were out there perhaps. But the mask wouldn't fit say beautiful African faces easily. So it is probably just a theory in the end. And not very important in the big scheme of things :)







A Thing of Beauty is a Joy Forever

A thing of beauty is a joy for ever:
Its loveliness increases; it will never
Pass into nothingness; but still will keep
A bower quiet for us, and a sleep
Full of sweet dreams, and health, and quiet breathing.
Therefore, on every morrow, are we wreathing
A flowery band to bind us to the earth,
Spite of despondence, of the inhuman dearth
Of noble natures, of the gloomy days,
Of all the unhealthy and o'er-darkened ways
Made for our searching: yes, in spite of all,
Some shape of beauty moves away the pall
From our dark spirits. Such the sun, the moon,
Trees old, and young, sprouting a shady boon
For simple sheep; and such are daffodils
With the green world they live in; and clear rills
That for themselves a cooling covert make
'Gainst the hot season; the mid-forest brake,
Rich with a sprinkling of fair musk-rose blooms:
And such too is the grandeur of the dooms
We have imagined for the mighty dead;
All lovely tales that we have heard or read:
An endless fountain of immortal drink,
Pouring unto us from the heaven's brink.

Nor do we merely feel these essences

For one short hour; no, even as the trees
That whisper round a temple become soon
Dear as the temple's self, so does the moon,
The passion poesy, glories infinite,
Haunt us till they become a cheering light
Unto our souls, and bound to us so fast
That, whether there be shine or gloom o'ercast,
They always must be with us, or we die.

Therefore, 'tis with full happiness that I

Will trace the story of Endymion.
The very music of the name has gone
Into my being, and each pleasant scene
Is growing fresh before me as the green
Of our own valleys: so I will begin
Now while I cannot hear the city's din;
Now while the early budders are just new,

And run in mazes of the youngest hue

About old forests; while the willow trails
Its delicate amber; and the dairy pails
Bring home increase of milk. And, as the year
Grows lush in juicy stalks, I'll smoothly steer
My little boat, for many quiet hours,
With streams that deepen freshly into bowers.
Many and many a verse I hope to write,
Before the daisies, vermeil rimmed and white,
Hide in deep herbage; and ere yet the bees
Hum about globes of clover and sweet peas,
I must be near the middle of my story.
O may no wintry season, bare and hoary,
See it half finished: but let Autumn bold,
With universal tinge of sober gold,
Be all about me when I make an end!
And now at once, adventuresome, I send
My herald thought into a wilderness:
There let its trumpet blow, and quickly dress
My uncertain path with green, that I may speed
Easily onward, thorough flowers and weed.







Update, December 14th 2014

My skin is quite flushed and burned up. I again try to avoid the worst temperature changes and keep the indoor heat around 17 degrees. Had such a nice few weeks lately but now all came to a stand still again and I'm stuck at home, cooling and trying to get my work done. Going out for walks when my skin isn't flushed too much, but had to stay in some days. I had a friend over last night and we had a laugh over youtube videos, crazy cat videos, but I was red and flushed all evening. Also had a little art expo opening but didn't know how fast I had to get out of there again. Ugh, life seems so hard to me, when your face is on fire. I found more lovely Victorian (-esque) photographs though and added them on the bottom of this blog post about beautiful Victorian faces.










December 19th 2014

My skin is still really flaring. Trying to get the seb derm to a minimum, not have indoor temperatures too cold or too dry, eating healthy, exercising. Am literally avoiding anything and anyone and it's getting me a bit down. Even when my skin is just red, not even fire engine red, it still feels massively burned up, hot and dry. I experimented with using jojoba oil on one cheek and it was more red for a day and then less red. So not a clear indication at all, whether or not to use it all over my face. My skin does generally best when left alone but I am getting really fed up with the burning. It's ridiculous how reactive my skin is to everything, it should protect me and make me able to face the world, instead it's the opposite and it limits my entire life. Arrghh rant over. 




Oh and my eye brows are really non existent for the half part. I feel it's getting worse with time. I looked it up again, wondering if it is the effect of seb derm, or rosacea, or something else. It can be a sign of thyroid isues but my level got tested over time and seem fine. I read that propranolol use can also cause eye brow loss. I take it daily, but low dose. Perhaps.. I think the real loss started since I have been taking my anti flushing medication, but even before that my brows seemed to thin each year. Now it's just bald almost for a good part, see picture. I fill it in with charcoal powder, loosely patted on my fingertip. Maybe that makes the issue worse, I don't know, but it looks more natural than without. Here is some info on hair loss of the eye brows (or eye lashes):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3358936/







December 20th 2014

Hi B. Bit of outrage here today, the two ruling parties in Dutch Parliament have tried to pass a law twice lately, given in by the pressure of the 4 biggest health insurance companies to limit free doctor's choice for patients. They want to only allow their patients to get refund for the costs of going to the hospitals and specific doctors they have contracts and connections with (and they can make their little deals with, nibbling at health care costs trying to find the cheapest doc who wants to do it and contracting themselves and their patients to them). If you want to go to another one (and for ppl with very specialized illnesses that is a nightmare as it can take ages to find a useful knowledgeable doctor, sometimes far away at the other side of the country even, although that still isn't too far given the small scale), well in that case you will have to pay for it yourself, or you need to get the most expensive care package they offer. And even the basic insurance is already extremely expensive, more than low income can pay for. Bloody rip off from the chronically ill and the poor, once again. Now we can still all chose our own doctor. Now the outrage part also comes from it being the Labour equivalent party (PvdA) who went along with this right wing party idea, despite their voters being against it. Second outrage is that they rule with this right wing party (VVD) and they tried to get the law past parliament (I'm not sure about the Australian system and how your Parliament works but compare it perhaps with the British house of commons), which worked but then the Eerste kamer (like the British House of Lords perhaps in a way, only ours are no lords and chosen by the regional representatives) rejected it. Twice. That means normally; end of story, law is rejected. But the 2 ruling parties are having none of that. Mind you, 90% of the Dutchies said in polls that they are against the law proposition. Now they have created a storm of threatening with a crisis and the fall of the Parliament and then came with a sneaky trick after 3 days of 'grueling' negotiations, expecting everybody to be happy they have a 'solution', some sleazy side alley to push the law through anyway if the ever so slightly adjusted law plan now gets booted again a 3rd time. Under the pretext of the bigger importance of the state. Big fuck you to the Eerste kamer and to democracy and all that is behind it is the lobbying of the health companies. Prime minister just says: this law will come there, either from the left road or the right (that's a saying here), because there have already been agreements made with hospitals, doctors and insurance companies and we have to stick to our promises.

Nobody seems to be bothered by that; representatives making appointments before a new law has even passed parliament. There is one small health insurance who's director is in all sorts of discussion programs and who spilled the beans, said he is the only one against the bill, and how the lobbying has been relentless etc.   More of the same here as is happening already in the states and England perhaps too. All in the name of crisis control, a good deal of the social welfare system we had has been taken away and replaced by privatizations and more and more costs, always the middle classes and poor who are hardest hit, a crisis not caused by them, but paid by them. I understand that they need to cut costs, again. And I don't know how you feel about all this. But for people like me it is a nightmare. We are bound to very specific doctors who have a special knowledge in complex illnesses and after this law gets into working, it mean I have to do with the first petty dermatologist the health insurance selects for me. Or all the costs are for me. Very sad. Almost gives me the nasty impulse to get as many things checked out and seen by by specialists as I can think of the next year, I know I can push for every type or medical research if I want to, just to make sure they have to pay. But of course, if more people would think like that, that in the long run only make them crank up prices even more for others to cover those costs, no way they will have losses over health care, only the patients will. Call it insurance but be in fact money makers with profit intentions. Arrgghhhh



December 24rd 2014

Skin is going a little bit better again, hallelujah. I've started using my UVB narrowband lamp again, exposing the skin on my legs for it (shielding my face from the radiation) and cranking my vitamin D levels op in a more natural way. The light has a very narrow light range, mimicking exactly those natural sun rays which set our bodies up for creating natural vitamin D3 from it. It's the only thing I have changed the past 5 days so I assume it has something to do with it, although you never know with rosacea, it goes up and down always it seems. I'll add some pictures tomorrow! Ok it is tomorrow, the pics are taken the past days, both when more pale, mainly when right out of bed. And then within half an hour I tend to get red again, but it's more tolerable now than a week ago. Cranked up the social life as well again.







December 29th 2014

I've been experimenting with jojoba oil on one cheek (see pictures here). Now that the cold is back, my face is fairly flushed again :(


I can see that the treated skin is a little bit more smooth in skin texture and at times it perhaps shows a bit more paler areas than the other cheek. I will continue using the jojoba oil for a longer while, only on my right cheek. 





January 1st 2015 

Happy New Year :) Healthy new year too I hope for everyone. I've not been feeling great the past weeks and the last 4 days I have had some chest/lung irritation, and what feels to me like TBC or pneumonia but well.. I tend to dramatize things usually :) It is most likely a simple flu thing that hit the lungs. A good excuse to feel like a wet towel and lay in bed watching movies all day, yep :) Never had anything like this in my life so coughing and having a rasping breath and mucus etc is making me a little bit uncomfortable. Hypochondria has set in and I was forced to write a friend in a jestfull manner, when we tried out writing in Victorian style about this. A little example of how this went (and it was all nonsense writing, but I leave most of his writing out for privacy). "
Hi, Well it just sounds like you're feeling a bit flat, which is a shame. I get that and you just have to let it pass but try and treat yourself to help it on its way out."

My wallowing response; You are reading my thoughts, flatness it is; vapidity. Am thrown back into the void, with its solemn solitude. It fills me with pressing ponderings which lay heavy on my chest and your advice, 'tis vastly appreciated. Especial while I'm simmering in this acrasial mood. I will have to just drift along with it, sehr getreowe that is, let it float me to wherever it may lead. However your correspondence, much anticipated, was a breath of fresh flowery sweet air, as if spring had landed on my with sickness ridden bedroom doorsteps. A herald of Persephone almost, ready to lead me away from further crevasses in the deep and beyond. In my state of semi delirium I was ready to come along with whatever that shadow had proposed. Ahh you know about my aeipathy for language, thank you for that. Your writing filled me with deep rooted vivacity and laughter. I felt the blood return to my dulled skin and a touch of spiritedness well up. Oh how scrumptious that is when you mock the smug language (and me?) like that. I suffer from a severe case of melancholia and agitation at the moment, they are thinking of shipping me to a Swiss sanatorium for fresh air to lift the spirits as melancholia can be fatal in some cases as you know.

And later: it seems i have been granted essomenic qualities; all the mockery with Swiss sanatoriums has avenged themselves onto me, I seem plagued by TBC, bronchitis at the least and feverish (for real). I think I will make it through the night, if not, thanks for the support, and if so, I will scriven most forthwith in return.

That over the top, old fashioned writing isn't serious, just a little word Spiel. I had to look up all of those hard words up myself as well, I used sites like these, looking for synonyms and then picking the ones I never had heard of myself, just for the fun of it; how posh and complex and over the top can we make one simple message sound. It's all done in jest, nobody would write like that anymore in a serious attempt of communication in the year 2014/15, but therefore it feels like a dressing up game but then with words, it's fun to me when done in a game like mood where you both try to sound as ridiculous as possible. I wouldn't say in a normal manner; 'hey I feel like dying, I might not make the next day, thanks for all'. It's positively ridiculous, but for the Victorian style it's not that far off actually. It's not just the words they used but also the theatrical dramatic way they used to write. So well that distracted me a bit and gave some goofy fun for a little while. The meal with friends was really nice actually. Even though it was warm there, even though the main dish wasn't lamb as was said before, but wild boar :) And even though it lasted till after midnight and I ate 5 courses of Forbidden (rosacea) Foods. I was red and hot after an hour in there but I notice it more often, when I just keep drinking cold water and relax, there seems to be a peak point and then the redness just goes down all by itself again. Not fully down, I was still pretty red cheeked when coming back, but a color which others don't seem to notice as unnatural. I am feeling so much better now. I know it deep down always; the more social I am and force myself to be basically, the better my spirits. The first hour or so I felt alien still, had been inside the house for too long I suppose, but once I got into the hang of things and conversations were nice and interesting and I could take part in it all in a natural way, my self confidence went back to normal too. Here are some pictures of Xmas dinner, with another friend. It was cozy and nice, we watched Audrey Hephburn movies as well.that evening and she seemed fine with me having a blanket around me and a fan on during the movies. I still feel very awful about having to do that with guests over but most seem to have less issues with it than I myself have. Which is a relief to notice.











January 5th 2015 
Since Christmas the lung symptoms have gotten worse. Still think it's flu or some ciral infection or bacterial infection from the airconditioning in public transport. I never had shortness of breath or other respiratory issues, but as days went by I got more trouble breathing freely, and was coughing constantly. It wasn't alarming enough to go to the doctor, I mean c'mon, a cough..  But after a week things still weren't clearing and my flushing and face burning went through the roof. I saw the local GP a few days ago and being a hypochondriac I already suspected pneumonia, TBC, a heroine death etc haha. Luckily it was just bronchitis and sinus and throat infection. Got a stash of mucus clearing and anti inflammatory meds, but I worried they would worsen my rosacea. So already relieved I wasn't suffering from incurable pneumonia, I just let it be and skipped some days of walking outside all afternoon. Seems things are slowly improving a little bit, but I can't recall having a flu for so many years and the few times I did have it, it would clear in a few days. Quite different this time. Also, I was surprised how tired and ill I felt. Just completely knackered actually. I will add some more little chats I had with some rosacea friends. I'm not sure they are even remotely interesting to read, but they give perhaps a little insight in how rosacea dominates even our leisure time conversations. A lovely lady who has emailed me the past year is finally doing well again and wrote me this: Skin-wise it's prob the best month I've had in a long time despite the sweltering summer heat. I've been throwing absolutely everything at this rosacea menace I can think of - still on mirtazapine and low-dose doxy (which I hope to come off soon). Also went to see a naturopath/ nutritionist who put me on high doses of flaxseed oil (which I seem to tolerate ok so far) and a couple of different probiotics, including a product called glutagenics which contains glutamine. Interestingly she said she sees a lot of patients with digestive issues/ibs taking anti-depressants for these problems and seeing benefit - apparently they also reduce inflammation in the gut somehow, which I  didn't know. Still have flare-ups frequently especially when sleeping but the good days are increasing. How have you been? Have been thinking of you as I know the winter is tough!x

I have been instantly reading up on flaxseed and glutagenics, and bought the last one online instantly: Glutagenics® features three key ingredients— glutamine, deglycyrrhizinized licorice (DGL), and aloe—that are designed to support the integrity and healthy function of the gastrointestinal lining . A healthy gastrointestinal lining is essential for proper digestion, immune function, and overall health. I haven't tried it yet and have no idea if it is of any use, either for my skin inflammation or bowel issues, but will report once I start trying it :) I also read up on omega 3 sources and flax seed and found this article, which basically says that you need to consume such an immense amount of flax seed to have your body make sufficient amounts of ALA (and then ultimately DHA, which you are after), that you are better off taking fish oil. Now that is impossible for me as they are too high in histamine and make my rosacea far worse every time I tried them, that I now bought some algae supplements (chose the Solgar one), which should provide some more DHA (which should lower inflammation in the body and skin). Again, I think I tested it some time ago with no significant effects, so I will try it again and report on it, but I have no idea if it will be of any help for my rosacea. I get this rush though, of haste and hurry to read up on things and BUY BUY BUY once I read such messages from fellow rosaceans having success with something. I have honestly so many opened and half used bottles of supplements here, it hurts to imagine all the money wasted, but I still can't stop myself from looking for that holy grail of supplements. Here is a little convo I had with my best friend and fellow rosacean on computer screens versus face flushing.


If you google her pics, Marsha Mehran, wow she was so beautiful. Such a sad story
Just reading the article, wow so sad. Id never heard of her, have you read any of her books?
No never but her story really hit me a bit. I'm such a recluse too haha
Yeah very poignant. It's interesting being awake early :) There are mums with kids everywhere!! I dont usually notice this haha because I do my errands later in the day/or where possible at night. Every second person I see has at least one child in tow! And there's young beuatiful women everywhere, it seems like the world is mostly populated by them in the morning. So funny, I never thought there would be such a different demographic of people out and about at different times of day. I guess I ought to take into consideration the fact its school holidays but most of these kids are toddler age.
Haha true, the few times I'm up and running in town around 8/9 i see all the young pretty ppl too, going to work. Around my time of getting out all I see is the jobless and the elderly haha, and the freelancers and from home workers like me I guess. It does give you another perspective on life and geographics :) Good point. I've had this horrible idea; what if the laptop makes my face so much worse? When on holiday and not using it much my skin is better than this. I already use a dimmer for the brightness though
Hmmmmmmm..What part of the light do you think is bad? You can tint and screen filters to remove the electromagnetic fields and uv. Holidays might just be the change of scene relaxation distraction etc that helps.
Well i read about that but this is a flat screen laptop and they don't emit UV is all I read. What filters?
I called for them no computer business has them; they all say they are not needed with new style laptops. What do you think of this clip? Its Irish dance, I used to love this one back in my 20s


I talked to a company who made them, I don't remember them now but a quick search came up with this.
Oh cool. I'll see if they have them and buy them
You can get tint
Amazing thanks. Haha I want them, also the face shielding although that one will look positively weird..
Interesting reading on uv. They agreed that led doesn't emit uv but I've read conflicting reports that it does.
Hmm.. the dimmer I installed can be switched on and seriously reduces the brightness of your screen
more than you can do normally. That is a good one I feel and for free
Oh that's really cool
But I might want that shield too
You must be careful of your eyes when I had consistently bad Rosacea I used low lighting for everything and I started needing glasses 
Ok. I will do some more reading on those products, if laptop screens emit no UV radiation then they seem silly
I know there's a tint you can out on but I'll google to refind it
Oh pls do
They emit high Emf's which can make the skin burn
I just want some stick on thing to stick over your screen
Dad got me a shield
For your laptop?
For the screen. Yeah
Do you stick it on like a sticker?
It does change the clearness a bit though
Could you PLEASSSSEEE give me the link to what dad got you?
No the shield hooks on
I need it badly. Ok
But the tint sticks on like a screen protector
I had one for my old style laptop. It wont fit on my laptop though. How do you keep it stuck then?
http://www.biznetmall.com/antiradiation/computer.htm There's a tint in there/ I actually found and spoke to a scientific company ho made these and specialized in it but I can't find it. I might be able to search my old email. Ok so you have the one where you have to measure the size of your screen? And then they make one that fits?
No my dad got mine from work but the one I would try is the made to measure bcoz it looks similar or get the tint that you stick on your screen
Ok your other link says that flat screens do not emit uv radiation. I have an old style UV shield at home for my old pc. I will try to find it and use it first, see if it makes a difference before buying a new one I think. It should be the same thing
But they emit Hugh level radiation from electro magnetic fields
Ok, also the screens? And do these shields protect from that?
The screens I linked will only shield from Emf's not from uv
Ok, that's what we want, but what about the casing? you got foil around your casing too?
If you've got a uv one at home try that first then you can rule out if it is a uv issue at least and if not try the emf shield
I need to measure my screen then
Yeah so they can fit it on. So you can Have you ever tested the electricity around you with a gauss meter?
It says new message from you but i don't see it. 
Huh? That's so strange  I was just saying how comprehensive that article was and have you ever bought or hired a gauss meter to test the electricity fields? I looked into it a few years back when I got tingles every time I used my mobile phone. I didn't get the gauss meter but you can hire them from ARPANSA which is aus's governement radiation protection place. It would be tough to find out you had a lot of emfs at home
I did at some point, my mum bought, no hired me an expensive crystal that was supposed to counteract bad energy and radiation. Very expensive, never helped me one bit. He had a meter device
to show me all the radiation points at home. At X's place we have NO wifi signals from anyone but our own. I have it switched off often. Also no radiation from mobile devices
Ooh cool. That's fantastic
I think i ill just try to work more from paper; less on the pc. 
oh i dont know anymore babes, what meter that guy used,  it was all very bad of course haha, since he wanted to sell his crystals. 
Yeah see how it goes before making drastic decisions
I would like that screen though, but will see if I can find one close to home. Otherwise order it from your site
You can hire them yourself but in the city I imagine the emfs are everywhere
Yep. But... I'm in front of the laptop a lot haha. I will try having it on less .. less laptop
see if it makes a difference. If so, then the screen filter thing
Possibly, there would be way more electricity from a laptop than a mobile tower. So that's good And a trainline. And high voltage power lines
yeh well I never second guess it. I might try to just cut it down. I love my pc, does that sound pathetic haha? 
Yes  me too. See how you go. What makes you sure its that? (well pretty sure)
Well just, waking up decent skin, then laptop on, bright red soon after
Hmmmm
It's part of me getting up and getting the blood flowing, but I also wondered, all that radiation and light, maybe..
That does sound suspicious. Is it the same year round?
Well no.. there you go. In summer my skin is better, even with laptop on. I think now in winter its already bad and everything triggers it
See you could be okay in bed since your relaxed and not as cold then worse out of the bed cocoon in the cold air. Yeah when my skin is bad I then react to everything.When it's good the triggers decrease somewhat, the res slightly more resilience against them.
True. Getting up, getting blood flow going, then an hour later I can bring it all down again by relaxing. Yeh in summer I can handle even bad foods, threshold for flushing is just higher, now its all a mess.
Yeah I've found the past few days in the heat as soon as I stand up and do something, anything simple that gets your heart moving slightly higher than resting does, the flushing gets even worse!
I get hotter
I understand the seasonal aspect. Oh and I got a message from X, she has some tips, has some seemingly positive effects from flaxseed oil and a couple of different probiotics, including a product called glutagenics which contains glutamine. 
I have flaxseed oil here. I might try it again, think it made me flush worse in the past though... She also mentions probiotics
Interesting!! Yeah I used that product glutagenics for my stonach burning, it was wonderful!! Ive got it again to try for my bowel inflammation
I think the issue with flax seed was that it is high in omega 3 which is good but also some omega 6 perhaps which can be pro inflammatory. But might be wrong I think the flax seed is the good one
oh really? Glutagenics, what is it?
Evening primrose is high in omega 6 I know that much
I neeeeed it. Yeh not good, stay away from 6 I think they also say on the forum,  omega 3 is good
It's an anti inflammatory product with glutamine and other natural noninflammatory's for the gut
Its by metagenics they are the best in dietary supplements. Very high quality.
Ok found glutagenics, will order it straight away! It also has aloe vera and what we call sweet wood?
Licorice root extract, its got potent anti inflammatory properties
Yep, ok same one, from metagenics. We have it on sale in holland too I see. 
Yes that's it
That's fantastic! How much is it there?
Ok cool Im buying it now. 28 euro. That's ok
Yeah its about $60 here
Yeh well everything is more expensive in australia and USA, all at least 50% cheaper here
I know 
As mentioned in the convo above, I read this article, I was really very touched by it, beautiful girl. Especially that isolated living and writing part.




Hi, oh still in the dumps here. I saw the doc yesterday, have some meds, western style ones and they give a truckload of stuff here, also homeopathic meds. Also have some inflamed sinuses and it gives me roaring head aches the past days.  Homeo- WTF :)  Jokes.. Here is a parody on homeopathic medication, had me laughing. No antibiotics were given, anti inflammatories and homeo. for now and if there's no improvement next week they will add antibiotics. But seems to go a bit better today, I had been out so far every day on afternoons on walks. Seemed to not help matters though, so just stayed in and warm today and have more air too now, no doubt it will be over in a few days. In Holland the upper classes, the old rich (not the nouveau riche) have so much etiquette. Like in other countries I guess, you hear it instantly in their accents. Exaggerated round long r's. 'Auto' means car, we say auw - toh, posh people say 'ooh-toh'. They tend to open their mouths a lot wider to pronounce words than those with regional accents. (And the elite of Europe also spoke French in the old days to separate themselves from the plebs of course). They have a similar word thing going on; we would say 'gebakje' for a sweet pie, they say 'taartje' (sounds old fashioned to most normal people). We say toilet, they say WC. We say fridge, they say freezer (it shows that your family already had a freezer before the invention of the electrical fridge, something only the case with the aristocracy), we could say pantalon and they say broek (pants), they wouldn't say ceintuur but belt. It seemed weird to me initially, you'd expect them to fall for the French words, and for some words they do, but just as often it's the opposite. The old money people stuck to the normal Dutch words then, and it were in fact the plebs and mostly the nouveau riche who would try to look more sophisticated than they really were by going for the French words. Trying to be chic. But the aristocrats here wouldn't do that, nor wanted to be associated with the nouveau riche, so they went for the real Dutch versions. And they still use those words, but now in the 21st century those words sound old and stiff themselves, as they are very dated, so you can actually recognize them now by these word choices.
  
I think the elite used to try to  distinguish themselves also by showing their education background, so they would chuck in academic terms, Latin, French, and try to make complex, embellished sentences in writing and speech. Just to set themselves apart from the rest and as some cultural subgroup thing. Showing off their knowledge and using it as a code among each other. So yeh, super elitist. Also, education used to be linked to having enough money back in the days here, and unfortunately that is still the case in England :/ But that meant that knowing academic terms and foreign languages was an automatic sign of status and wealth (= education). Oh yeh, I never had a respiratory or lung related issue before so was indeed surprised how it knocks you out. Having not enough air, the inflammation I suppose too, was just a wet towel as we say here, very annoying as we usually just ignore flu's or other minor ailments in our family and get on with life and then it's over again soon enough, but when you struggle for breath, wow, that's a different cookie indeed. Made me think of sister too, we all had some allergies and eczema as kids but she had it really bad and then has asthma and bronchitis, chronic, on top. Those conditions tend to come in clusters, allergy, eczema, asthma and she hit the jackpot.  Yeh true about the antibiotics, they used to hand them out like candy, especially in France and Spain, all of the south of Europe possibly. Even for flu. And they expect a prescription when they leave :) In Holland we are the opposite, that protestant Calvinistic thing. Women don't get any pain medication during childbirth either with us. Epidural? Hahaaa, in your dreams. So in Holland you usually leave empty handed when you visit the GP: oh wait it out a bit longer, it's nothing, it will solve itself. That didn't help my sister much at the time, I swear in France or most other countries this wouldn't have happened. They send you straight to hospital with the slightest shred of doubt.

So anyway, that hasn't helped no with antibiotic resistance issues,  although worst perpetrators are the poultry and livestock farmers. They en masse give these animals preventive antibiotics. Just makes me livid, it's so ridiculous. Firstly you eat all that crap, plus the growth hormones they give and the steroids they give to prevent inflammation, is all in your piece of meat, and second because you have full strains of antibiotics who are resistant now. Even though we only started using penicillin and ab's since the 1930's.  Overused it in less than a century, you have hospital bacteria's which are completely resistant now, and they adapt faster to new meds than doctors can make and invent them. All because of greed from farmers, and a slack government who put economic interests first and leave these issue for next generations to sort out. So now they finally started to realize that it is insanity to keep prescribing ab's for things like a virus, and all it does is make those bacteria's stronger and giving them plenty of opportunity to make themselves immune for them. Oh yeh those are french words but became part of Dutch language over time, sorry, forgot. Ceintuur is a belt, but it a normal Dutch word now, same for trottoir (pavement), abattoir (slaughterhouse), ambiance (atmosphere). Here is a full list of all of the French words that made it into our dictionary. We tend to love Afrikaans :) They do exactly the same. Make simple words which are pretty descriptive and which seem hilarious often to us, in a good way. Sometimes even they themselves use it as jokes. Safety helmet is veiligheidshelm in Dutch, the SA make it 'pletterpet'; when you fall to pieces we say; te pletter vallen. It's rough street talk. A pet is a cap. G-string, those flimsy knickers, is amperbroekie (hardly-pantsy). Another funny one is stront-in-die-broekie for diarrhea. (shit in your pantsy). Boom is tree in Dutch but they also use it in SA for grass/weed:  ‘jy lyk sleg, het jy die naweek dalk te veel boom gerook?’ (you look bad, have you die last week smoke too much tree?). Bromponie = scooter, in Dutch is it a brom (the sound of a motor) ponie (same for you, the small horse). Duikweg (dive away) is a tunnel :) Kameelperd; a giraffe (camel-horse). It's mainly Kaapstad where they make these fun words by the way. 

 






Breakfast, the Dutch have a special liking for hagelslag, which are chocolate sprinkles. The Dutch eat bread with meat or cheese on it or hagelslag. 
Very well loved. People bring it with them when going abroad, that much loved actually. It's really tasty, chocolate on your bread. The best is warm toast with some butter and then the hagelslag with a cup of tea, it's delicious, but if you are more of a savory than a sweet eater it might not be your thing. Every person in Holland will know it, eat it most likely and ever kid will protest when there is none on the table with breakfast (well almost all).  There are these health guru's who sell books about eating high fat, no fat, high carb/no carb and so on, butter was once good, the it HAD to be margarine, now it turns out that stuff is bad for you after all and it's back to butter. Same for eggs indeed. Not sure if eating ten eggs a day is wise but just the one each morning should be fine. Most seem to like runny egg yolk, but that makes me cringe. Rather have them hard boiled or scrambled. Remember as a kid we stayed during school breaks with other kids at home as my parents wanted us on some artsy special school initially, which was 40 minutes away in the car. Don't ask me.. The type where you as a 5 year old could chose if you wanted to learn writing, maths or preferred the playing corner all day. So we stayed with these ultra hip people at lunch breaks and this woman was horrible, we had to eat sandwiches of whole grain bread with massive cold lumps of butter on it and mashed banana. That dewy soft texture, I literally had to puke and she would just force us to finish it or nobody could leave the table or go back to school. Horrendous. Or force us to eat such "sammies" with lumps of butter and cut cheese, still hate that, 'raw' cheese.. Only the melted one is bearable. My mum had that thing with rhubarb, she was too skinny as a kid in the 50's and was sent to the catholic nuns for long weeks to fatten up a bit. They had the same force feeding thing going on there and she would be puking and they had her eat the whole plate, still can't stand the smell of rhubarb even (I like it though).  The best breakfast I ate personally was in Istanbul; nice bread and all sorts of feta cheese, olives, tomatoes, humus, savory but really nice. And also love pancakes with blueberries and maple syrup. Oh and last but not least; this Ted talk and the little docu's on an Australian bush fire survivor. Really touched me deeply, hearing her talk and seeing how she braved through 70% burns on her body. Remarkable speech I think and she makes some touching points about being more than your exterior. And making the most of your life. I'm often too quick to think that other health sufferers are better off than me and that their message 'therefore' isn't fully applying to me, but here that is impossible to maintain. A must watch really.

    





January 12th 2015 

It's been quite a few days since the drama in France and the Charlie Hebdo murders. I followed it on tv and in the news and it made for some passionate debates with friends and online. Mainly about the question (apart from the disgust over these killings): what is more important here, the freedom of speech and to express oneself in the media, or the duty and decency to not offend others. Personally, I go for the first one, as I think freedom of speech, and also of practicing the religion you want and having the freedom to chose the type of education you want, is most important. We have those things here in the -relatively- free west. Not offending others is a sliding scale in my opinion. I don't agree with his refraining from offending people because 'offending' is a vague term and a sliding scale. Today its a cartoon, tomorrow it is criticizing religious practices openly. Why is it ok to make cartoons of politicians, of the pope, of CEO's but not of Islam? I get that they don't want to put oil on the fire by posting offensive cartoons , but it seems to me most journalists and papers these days just won't post them at all due to fear and private safety issues. I don't agree with that. The catholic church also made issues for a long time with satire and ridiculing cartoons. In France they fought for that right, they have a tradition with it since the Marie Antoinette times. Why is it ok to ridicule the catholic church now, politicians (Le Pen also mostly!), Israel, CEO's, anything BUT islam? Especially when you see how big the multi culti problem is in France. I don't think it's about consciously trying to provoke anger and hatred there, but about the right to mock actuality and the every day life issues in the press. Why would Islam be excluded from that, only because they get upset over it (the Catholics don't like their holy people being mocked over sex scandal issues either) or because journalists are afraid, I think it mostly comes down to that.

We also saw the images of the march in Paris today on the news, quite touching and impressive, also Angela Merkel and other European leaders in the front, also Netanyahu from IsraĂ«l, and just the whole scale of it. It was the largest gathering since 1944 in France, 1,5 million people on the streets. I hope it unites people. I also liked a lot that in England, they projected the French flag on the Tower Bridge and parliament. That must have taken them something haha, they used to want to drink the French' blood :) Here in Europe there is a small but radical fundamentalist group of Islamists and there is an issue with hate preaching in some mosques. Gathering impressionable youth to fight for their religion and becoming radicals. It's hard to stop.  Also, any limitation of religion is just not in our constitution, we all love freedom of speech and religion so I do worry how to curtail these issues. It was powerful however to hear Muslim organizations speak out against the killings in Paris, and against fundamentalist Islamics. To see that they overcame that fear of speaking out. It seems quite a sign that Muslims were holding the "I am Charlie" sign, something which seemed unimaginable one week ago! I saw a reporter in Paris covering the terrible Kosher shop hostage taking, and there were arguments from residents behind him on the street. He let them talk in front of the camera and most said; we won't allow these terrorists to break our union, divide France. We are united as Muslims and Christians and atheist and we are brothers against terrorism. That was great to hear.

A friend of mine who is German linked it to the Second World War: "That is what people say about WWII;  "you should not judge people of another period of history" and blabla. But then I read what the White Rose guys wrote and it’s like: ok, you were all lazy and cowardly bastards. I do not believe these are "western issues". Yes, those students who printed leaflets against the nazi regime, their words could have been written today. They do not sound like 1940 or something. So nobody can tell me people were generally blind or anything" And considering religions, we had wars of religion among Christians which are now entirely forgotten. What we should do however is bar foreign powers from funding certain mosques and hate preachers. Those should be prosecuted with no concessions. Now is the moment, no-one will dare oppose strongly while the topic is still hot. We should not underestimate peer pressure among Muslims, so this is hopefully a turning point




So, this is a nice site which shows all the hot spots in terms of twitter activity about the Charlie Hebdo atrocities on that fateful day. 

Apart from politics, my skin has been doing a lot better since the flu/lung issues and sinus issues cleared by themselves. Seems I didn't need to antibiotics after all and neither took any of the other meds so glad my body is good for something at least :)   I'm a lot happier and been out and about a lot. I stick to a healthy diet of apples during the day, lots of lukewarm water, stir fry of vegetables and organic meat at night and as a treat some dark chocolate perhaps. Had a very nice day today, slept forever as I slept so little the day before, then my sister called me awake, said she would pick me up in half an hour to go to my mothers place. She dyed her hair brown after us photoshopping some brown hair on her picture the week before and it looked really good I thought. Much better than the washed out blonde. So she was buzzing in the car about it, we had a good day at mums with nephew and stayed there for dinner. My mum is such a character when she is in a good mood, very funny and she kept saying what a dirty snout he had. Just got back from sisters place, she just likes to hang on the couch with me most nights when I'm here, we enjoys some tv bashing and ridiculing, both under a fleece blanket and watching tv series, this time an appaaaaaalling show, America's Next Top Model. We just revel in disgust, which is quite delicious at times and secretly really like the show :) Sister has a fan in the house, some vertical column and she keeps the temperature a bit down when I'm there and I have been very comfortable this way, being able to stay all night flush free, which feels like a big victory.


Also had to really laugh about this:

Meet Esther the 48 stone 'micro-pig'! Ten times larger than predicted, the giant porker is now the size of a POLAR BEAR 











January 29th 2015 

My skin has been up and down, good and bad. When I stick to a very healthy diet, apples, vegetables, some organic meat, it looks a lot better than the times I give in to foods like chocolate. Gluten are the worst I noticed. I was in town today and in a supermarket, looking for a cleanser for the skin. The products of La Roche Posay seemed most suitable of what I saw there, I also bought this powder. I'm going to England in a few weeks, seeing Dr Chu in Hammersmith hospital again and I will also spend a couple of days in York. Found a cheap B&B and it seemed fun to add a few days of holiday and sight seeing. Might even put some make up on again there. It was a painstaking thing to remove the make up last time, with water and cotton pads, so I wondered if my skin reaction for some weeks after that trial might be linked to the scrub I unintentionally gave my skin in the cleansing process. These two skin cleaners are both aimed for hypersensitive skin. I asked the girl behind the counter which one would be more suitable for my needs but she had no clue and was also very worried about the redness of my skin. That was uncomfortable, I rather pretend to just look a bit red but nothing that would really stop others who see it in their tracks. But she seemed really worried about it and gave me free samples of anti redness creams (all with perfume in it I saw at home, thanks..). In the supermarket itself I looked for a powder from La Roche Posay, to give the near dead mask effect their foundation gave me last time I tried it, a spark of life. I hope this stuff works! The ingredients are not bad: http://www.laroche-posay.fr/produits-soins/toleriane-teint/toleriane-teint-poudre-fixatrice-matifiante-p8266.aspx

TALC
SYNTHETIC FLUORPHLOGOPITE
MAGNESIUM STEARATE
TRIISOSTEARIN
PHENYL TRIMETHICONE
SILICA
CAPRYLYL GLYCOL
ALUMINA
CI 77491, CI 77492, CI 77499 / IRON OXIDES
CI 77491
CI 77492
CI 77499 / IRON OXIDES

Ingredients of the cleansers: Toleriane ultra demaquillant:
*Water
*hexylene glycol
*honey
*allantoin
*potassium phosphate
*sodium hyaluronate
*poloxamer 184
*dipotassium phosphate
*disodium EDTA
*polysorbate 20
It says on the package that it is for the ultra sensitive and allergic skin and that natriumhyaluronaat (spelled in Dutch here) is used in eye surgery, that it easily dissolves make up and that it eases skin discomfort and is very mild. Sterile ampules and has a high tolerance. No preservatives, perfume, alcohol, parabens, lanoline or colorings.

The other one, the big bottle, is called Toleriane dermo-nettoyant. It is aimed for the ultra sensitive skin and has these ingredients:
*water
*ethylhexypalmitate
*glycerin
*dipropylene glycol
*carbomer
*sodium hydroxide
*capryl glycol
*ethylhexyglycerin

I know that glycerin leaves a little film on the skin, or teeth when it's used in toothpastes (most contain it). I haven't looked up all the ingredients yet, but these two seemed by far the best of all the skin cleaners I could find, even Avène had perfume in their range for sensitive skin (making an angry face now). I think I will try both on a different cheek once I used make up again and then see what the results are. So I was in the supermarket, talking with the lady about these products, this was a second lady, and she also said in a very worried type of voice; well, I can see that you really have hyper sensitive skin. It is so red! She gave me also a bunch of freebie creams but all have shitty ingredients,  perfumes most remarkably, so they are pretty useless. I only got more red when she said that, it is also so hot in supermarkets here in winter..Oh well. Here are some pictures of the past week and an oldie I found in some box the other day. I will update on more day to day thoughts and (non)sense below the pictures. 


                                                    Found this old picture, me around age 24

I also took a friend to the beach, it was storming and my face got sand streamed.. Beach was nearly empty and the wind came from land, blowing the sand like in some desert storm, waves of them, then clashing with the real waves, which was lovely to see actually, but I had sand from socks to hair and back. Wrapped my poor skin up with 3 layers of different scarfs, it was a preposterous sight. But a lovely outing. Played in the snow with Tim. I've downloaded another audiobook, to listen during evening walks. It's from Hilary Mantel: Wolf Hall and it's yet another take on Anne Boleyn and Henry 8th, although here they are mere background extras, to be honest, as it focuses on a character I always loved, also when watching The Tudors (tv series); Thomas Cromwell. Brilliant, sharp, witty, clever, scheming. The book itself is great! Fast paced and intelligently written and gives that whole known Tudor story a twist, by telling it from the perspective of Cromwell, usually seen as a dark force, but not this time. She writes like a man which is a good thing here, its witty and dynamic and historically accurate as far as I can tell and could read up on. Assumes a lot of knowledge on the period and key players already though, not sure I would have been able to follow it all a year or 2 ago. Cromwell was a blacksmiths son from Putney, rising high by his great intelligence and social skills and he was quite charismatic by the sound of this book, well he always was but now you see a more personal side to him. Lost his 2 young daughters to the sweating sickness in 1528 and his wife too. Especially his dialogues with King Henry and Anne Boleyn are really great, one big scheming snake pit of course but played at a high level it's interesting to read about, well for me.  I want to read these books first (also the second book from mantel on this) before starting with the BBC series that has already been made on it.


See how happy they all looked going to school in the late 60's :) The pictures are in this link. Made me smile these pictures. Despite some being from privileged Beverly Hills High school. Someone wrote as a comment with these pictures; "They all look so healthy... and happy...  and they're interacting with each other instead if staring at their phones. "How strange" lol!" And see if you like this documentary, it's bout the universe and our perception, I liked it. I watched the movie Hot fuzz, it was funny. About the over diligent London based cop who makes his colleagues look bad and who is sent to a sleepy village in the middle of nowhere. "I know what you are going to say, but the fact is you've been making us all look bad. You can't be the sheriff of London, if we keep on carry you run around town, you'll continue to be exceptional and we can't have that." The concept reminded a bit of a French movie which was mighty popular; Bienvenue chez les Ch'tis. An employer is shifted from the Provence (top of the hierarchy, expensive and nice temperatures) to the worst area of France, the north east, near Lille where they speak a dialect that makes the Grunnings we speak here sound like a breeze; Ch'tis. Same type of village, same type of village'y people and initial shock horror and magnifying the differences between city and village communities, especially in some remote place with all their extraordinary characters. But that's as far as the comparison goes I guess, Hot fuzz had a bit of a farce type of slapstick humor.  Laughed at Peter Ian Stakers (P.I.Stakers) description of the missing swan, one of the mind numbing crime scene investigation the cop initially has to solve: About 2 foot tall, long slender neck. Liked the Andes two too, reminded of the obnoxious sneering Oasis brothers in some way. Got all a bit of an outrageous parody in the second half. Sergeant Angel came close to Superman in some weird, less heroic and manly way. The movie also reminded me a little bit of Forrest gump, the ultra talent and soft natured geekness of him, and Barton Fink. From the Coen Brothers.

I also read something in one of those lady's mags. It's a dialogue between a male and a female columnist and she asks: "This is a question that keeps thousands of women awake at night; how to end a relationship in a decent manner? You men are exceptionally bad at it. Often you just start to behave impossible, grumpy, rude, disinterested. Until we are desperate and decide to pull the plug ourselves then. Or you men let the proof of extramarital affairs lying around, hoping that we will kick you out. And I even know a story of a man who left at night, leaving the baby behind and a note saying "I can't do this anymore". Perhaps looking someone in the eye and saying that you no longer love him/her is harder than it initially was to declare your love to them. But nothing hurts more than seeing that coldness in his eyes and having to be happy with a few crumbs of his attention, just enough to clamp onto and to hope he just has a midlife crisis. So, could you as a grown up man tell your male friends how it's supposed to go, that breaking up thing? So that we no longer have to pull it out of you."

His reply: "Ironically enough, when it comes to breaking up, men are women and women are men. When women break up, they do it honest and ruthless, manly almost. Without a shred of compassion we are cast aside by an ice rabbit and that is for many of us also the first moment that our (ex)lover shows us the tough side of her personality. During the entire relationship she was an emotionally incontinent good-for-nothing. Now she is suddenly rational, to the point, clear headed. If we had known that she was like that, we would have made more of an effort! Anyway, men are like women when it comes to breaking up. As decisive as we are in every day life, so tuntig (german, dowdy in English?) are we when it comes to ending a relationship. A real man says: 'Honey, we tried everything we could, but it didn't work. I am no longer happy, and I can't imagine you are happy any longer either. I look fondly back at our beautiful years together, and I will leave tomorrow because I understand that I can no longer stay here anymore. I do like to have some wild break up sex now, because I hear good stories about it.'   The End. But we are cowards, afraid you will demolish the furniture, or attack us with a knife. We are afraid of voodoo dolls and revenge campaigns. As rational as you approach this situation when you are the ones doing the breaking up, as hysterical you can become when we do it. But the most important reason for us not liking to do the breaking up is, that we can't take your tears. We don't want to hurt you. That's why we leave it up to you. That is better for all the parties involved."

I guess this is the Dutch way of things, I wonder if it goes similarly for men in other parts of the world (and women of course!). Are men just unwilling to get into any unnecessary fuss ? Has it got to do with fear of hearing they are not good enough perhaps? Not living up to expectations? Are they cowards or just not bothered? Maybe they know women can become non rational when ditched? I know of a few men who just don't want to look the villain and let it all bleed dry, the relationship that is, in a cowardly way to force their soon to be ex to make the final blow. 







I have continued writing my day
to day life updates in 
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