29 May, 2018

Ongoing post, Update day to day life VIII, September 29th 2018 - July 21st 2018




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. I also blabber here about everyday life topics. 




September 29th 2018

I still had a draft post lingering about the trip to New York from 2006, which my sister, mother, her new husband (at the time new) and his kids took back then. I already had the rosacea trouble for a good 7 years by then, but that trip went fairly well and was a real highlight of the year. I published the post after all, it is stored all the way at the beginning of this blog, but you can read that blog post here if you are interested. My skin is normalizing a lot by now, the pityriasis rosea is almost gone. The areas first started to become flakey, then dried up it seemed, turned into a sort of brown skin colour, then the top layer shed and pinkish new skin became visible underneath. Then the new skin became wrinkly, like foil paper, and very delicate. And by now the skin seems to become more firm again. I have what looks like hyperpigmentation all over my body now but I am certain that is temporary until the skin recovers entirely. Unfortunately a few spots came back on my upper legs but I blame that on some high stress the past week. (They are already starting to fade in the centers again as we speak). So, what stressful event triggered that mild recurrence? My beloved cats! Again. This time no untimely death (sniff), but all of them caught the calicivirus. One after another. These viruses can mutate like crazy, so old vaccinations is not protecting any of them, although the cat who did  not get this vaccination (I'm almost too ashamed to type this, he got HIV and other major vaccinations but I shuddered reading in his little passport that calicivirus was not among the vaccines), well he got it by far the worst. Think of drooling of clear mucus from the mouth, smacking the lips and clicking the mouth constantly, sores on tongue and cheeks that prevent them from eating like normal and my dear bunny-tailed cat Piotr even has inflamed gums of the teeth. I have visited the vet numerous times and aside from anti-inflammatory medication , a stomach protecting drug and liquid power food that I can administer to them with a syringe, it is a virus that has to run its course, now that there are no secondary infections going on. I don't want to sound dramatic, but I have respect for mothers who handle several (ill or healthy) kids, as I have been caring for a couple of cats now and it has taken up half my days time and energy...

First one needed to be entirely isolated from the rest. Then a second too. Make that constant policing of doors and windows, constant washing and disinfecting of water and food bowls, cuddling, comforting, administering medication, forcing their poor little mouths open while whey whinge in pain. Then comforting them again. Then there is Piotr who wants cuddles and attention all the time, and Igor who howls and cries when he is left alone too much. Preparing tuna in warm water, mixing it so they might be able to swallow it (not..). Googling whether or not meloxicam is safe or not for cats (I read nothing but horror stories about it online.. I don't even trust a vet anymore these days... tragic... But I read there isn't that much out there for pain treatment for cats). Googling what else I can do against this calicivirus.. Worrying. Checking if it can be lethal for cats.. Here Koshka is mightily sad and pitiful. Koshka has an ulcer on his nose, a sore, it seems, as well as on his tongue and he is salivating a lot; mucus dripping from his mouth. (I use no make-up normally, so sorry for the shitty half gone eyebrows in the photos, that are unfashionably unretouched and the lack of eye lashes and the blotchy skin and watery eyes and little birds mouth).

This virus is apparently very contagious so droplets from a sneeze or a brush against a piece of wall or furniture in the hallway at some point can already be picked up by one of the other cats. So I am mopping the floors a lot too. cleaned all the floors and tiles in the house with strong cleaning products (oh my poor skin, those fumes cause me to flush, especially chloride), washing my hands about 50 times a day with strong soap to prevent cross contamination through hand-attached virus particles and isolating the two (initially) sick cats, but it still isn't helping, as they all got it eventually:(  The vet said he thinks it is more likely that they picked it up outside the house, by another cat with the active infection. Then when they became a little bit stronger again, they wanted to go outside, which is out of the question. Firstly because they can infect other cats, secondly because they can hide somewhere I cannot find them and nurse them (even with their gigantic GPS trackers on, they can hide when going into sheds or under bushes where no phone signal is). Thirdly because they need rest and warmth. But they started to eat a bit again by now, soft foods with a lot of smell and sauce, and they started to become vocal and sassy again too. So I solved that problem for now by attaching a string, like a leash, to their collars. I close the collar tighter around their necks than normal, so they cannot run off. Surprisingly, both my feisty boys were so enthralled by the outside world again, that they walk like tame lambs besides me, sniffing the grass, rolling on the ground, scratching their claws again and not once trying to run off. So twice daily I now let out cats on a leash, an hour a day per cat, times three currently... Big sigh. I will never get a dog, it is so nice that cats are normally self sufficient when it comes to outdoor time. But it is also a bit of fun and a bit of further bonding I suppose. 
Koshka was breaking the house down today as he wanted to go outside, raging like a lion. When he is like that and has the energy for it, he can actually attack the door. LOL; ram it like a rhino or scratch it. They know what buttons to press hehe. They never seem to actually injure themselves when throwing their bodies against the door, but when they want something, they want it NOW. So I let Igor in through the front door and Koshka leaped like a jaguar over him through the tiny door opening outside! Without his GPS tracker on as I took it off to make him more comfortable. I jumped after him right away, and luckily he started rolling on the ground in the sun in the garden, so I approached him very gentle and managed to pick him up again. Phew! I set up the large dog bench I still have and put him in there in the garden, so that he has some wind and sun and sight anyway, but of course he is trying to escape. I guess he has some energy again. My dear friend Emma also has rosacea and she has two Burmese cats, absolutely gorgeous creatures and with their own health issues, so she has been a huge emotional support for me, discussing this and that's and what if's, thus or so's. I do understand why cat ladies have the crazy label attached to them haha. But man.... what a load of work and worries. I was supposed to travel this week, but last minute decided to let it go (and a few hundred euro's worth of tickets, arghh), as I couldn't leave my dear cats alone under someone else's care. oh well... So from the stress, I assume, I have a few new pityriasis patches on my legs, but nothing too bad... 




Song of the day (I think 
this man is so hot):

    


You can check out my contemporary music playlist here if you care for this. I'm so tired, even after normal sleep, just as I felt when I was having a burn out in the past. It is overwhelming, and I probably take it all way more heavy than normally, as my beloved cat Petya passed away last month. So I see potential death lurking around every corner now. I'm getting tension head aches in my neck and back of the head very regularly, already since my early 20's, and it's really bad at the moment too, the car drives worsen it. Ultimately it is all just stress though. I have read about Bukowski and his love for cat. He advised: "If you're feeling bad, you just look at the cats, you'll feel better, because they know that everything is, just as it is. There's nothing to get excited about. They just know. They're saviours. The more cats you have, the longer you live. If you have a hundred cats, you will live ten times longer than if you have ten. Someday this will be discovered, and people will have a thousand cats and live forever. It's truly ridiculous." In fact I have a cute book with great illustrations of all sorts of famous people with a great love for cats ('Of cats and men'). It also includes the likes of Sir Isaac newton, Tesla, Churchill, T.S. Eliot, Ernest Hemingway and Haruki Murakami, that Japanese author I like so much. 30 famous men in total.


I have read more books by Haruki Murakami now, after Kafka on the Shore. Finished Norwegian Wood last week and I can recommend it now. Took me a bit of time to get into, this is his most famous and most straight forward book apparently, but it has those typical Haruki elements; a young male protagonist, coming off age, quietness and strong atmosphere. Of course a cat comes by somewhere. I don't know still exactly how he does it, but all his books have some elements of calm to them, introspection and melancholy. I love getting into his world. Japanese are strange people anyway, in a nice way. Saw a documentary a few days ago where a Dutch woman who speaks Japanese went there and interviewed people. Ended up at a 'moss fan club', Tokyo city dwellers, living in a shoe box, and being transformed by their love for moss. Every big city in Japan has moss lovers clubs. They look for it everywhere in the city, in gutters, on street corners. No matter if you stamp on it, it won't break down or give up. The fans say that moss is like a small forest, if you look closely at it, and that they would love to live in it. They give the moss they find water with a spray can and talk about it together, sometimes for hours on end and even then they aren't done talking about moss :) "Moss exists longer than humans, so it has a lot to tell and teach us. We are secondary to moss. Moss has never changed in all those times. Moss is calm and peaceful, so in terms of 'zen' we have a lot to learn from the moss".

They saw it once, on their way to work, and the moss was speaking to them (this sounds like a Murakami novel in itself). The moss was comforting them, telling them all would be OK. To be strong and keep their head up high. Because the moss kept encouraging them every day, they learned that it wasn't bad to be different. It gave me directions, one said. And thanks to the moss I could leave my awful job. And the other Japanese said; What type of moss was it, silver moss by any chance? YES. Yeh well that is strong stuff. Silver moss teaches you about life, it is the grandfather of the mosses. (Everyone was nodding and smiling). Total wacko's in today's western view of course, fruit loops who imagine a piece of moss to talk to them, but it is also endearing I think, how the human mind can find meaning and solace in small things like that. (And let's not forget that masses of westerners presuppose an anthropomorphic entity—‘the creator of the Universe’—cares about every individual and talks to ‘anyone willing to listen’, though evidence of the existence of such an entity is nonexistent, to the extent that it is invisible, undetectable by any means, and commonly absent when most needed. At least moss can be observed). And these people feel less lonely because of the moss, as they found each other thanks to it. They wear rings with moss attached to it, moss earrings and green crushed velvet jackets. Moss will always be there and thus brings solace to some people, and looking really up close at it, it looks like a foggy forest in which you can get lost, and in which you can feel a typical Japanese thing; yugen. Yugen has different meanings in Japanese, but it is mostly used to describe a transcendental personal experience, felt when you are all alone in some remote nature spot, ideally a valley with mist and dew, or a deserted forest or cliff top. And the loneliness combined with the connection with nature that you then feel, is apparently described as 'yugen'. But that word can also mean infinite, or poetic calm. Or it can refer to landscape (ideally that misty deserted valley). Deserted, in the early morning or late evening. So not the landscape of California, baking in the midday sun! No it must be desolate landscape, and a bit eerie and reflective. Japanese for a long time had no word for the colour green by the way. So they called it blue. The forest was blue, the grass too. Tea, blue too. Midori is a new word, meant to describe green. But they still call a lot of things blue, the green traffic light for instance. For the Japanese there are apparently four levels of difficulty for everything in life: easy, medium, hard and Asian. (Ok that was a joke, made me smile). But in the end; a Moss Fan club sounds like a cult brotherhood or something... Shinto apparently is a very nature based religion, and seems to be speaking loud here. Moss that is comforting; perhaps this is a miniature version of the birth of religions? The birth of deities. Humans need to believe there's something bigger than them. It is appeasing, in the face of eternal death. Apparently that's how the human mind works and what most of us need to face the inevitable.

I also read The Bell Jar from Sylvia Plath last week. I like some of her poems, and I have been very intrigued by her life story, mostly because it is very tragic and also because I'm a big fan of her husbands poetry, Ted Hughes. This is her only novel and I have been pondering why I was not mightily enthusiastic about it. Sylvia Plath to me is a better poet than a writer. She writes well, but to me this book is not so much a classic novel with a captivating story arch, but more like a journal. It reads like a journal, and its first third was interesting enough, as she details the big city America of the 1950's by the sound of things, and that is a great era to be thrown back in. But soon after the book spirals into absolute navel staring, set in a One Flew Over the Cuckoo's Nest setting. I get it was new and refreshingly honest how she described a mental breakdown, and in light of her life it was interesting to peek into her mental state of mind, but I don't think it made for a classic novel necessarily...  Just personal opinion of course :) I personally dislike books or movies dealing with mental health patients as it all becomes so clichéd quickly. And depressing. Which I don't mind, depressing topics, just not about mental health facilities and the odd characters being there. Maybe it is highly interesting for people who never dealt with any sort of depressions, despair and mental health problems, but I know them personally (not as severely experienced as Sylvia though, much more mildly and transiently) and as well as she describes her fall into the dark pit; for me it does not make a great story. More an enlightening but ultimately very depressing series of diary entries. I am biased as A. I don't like to read about depressing diaries and B. I love classical story telling, think of Tolstoi or Sandor Marai. All encompassing worlds with multiple layers and an actual story arch. So this book wasn't my cup of tea. I did love the little splatters of poetry she dropped in, for instance:

“When we came out of the sunnily lit interior of the Ladies' Day offices,
the streets were gray and fuming with rain. It wasn’t the nice kind of rain
that rinses. you clean, but the sort of rain I imagine they must have in
Brazil. It flew straight down from the sky in drops the size of coffee
saucers and hit the hot sidewalks with a hiss that sent clouds of steam
writhing up from the gleaming, dark concrete."

I also read (yes tried another contemporary book) The Marriage Plot by Jeffrey Eugenides. I thoroughly hated it, to be very honest. This book to me was so dull, shallow, annoying and such an empty shell. Boring characters, no real story to tell, other than impressions of very self obsessed university students not really knowing what they want from each other. I felt actually as if Eugenides had just read The Bell Jar before writing this book (which he probably didn't), and came up with a dull even more inferior version of parts of it. Full of difficult words for simple stuff, that serves only the goal of making the student-like text seem more intellectual than it really is. Or so it felt. It makes the cardinal writers sin of elaborating extensively about the literary interests of the protagonist, firing off endless writers names in true name-dropping fashion, and hoping that somehow lifts the main character up from her otherwise mediocrity. But the characters themselves have nothing interesting to say. Nothing poetic, nothing deep, just mediocre types, throwing around big writer names. The entire story itself is so mundane and non-uplifting.. Ugh. 

I still read normal books, but have mostly skipped to audio books these days.. It is nice to have your own inner voice reading and having no distractions, nothing to steer you in a certain interpretation direction. Like a voice.. Or intonations. But I am so busy these days that I can't afford anymore to lie in bed with a book all days and nights as I would do sometimes as a student or adolescent. And the audio books allow me to read while driving the car, read while exercising, while washing the dishes, doing the washing, getting my groceries in. This way I go through a book a week again like in the old days, and nothing is really paying the price for this (not a dirty house, not a pile of washing waiting for me etc). The only big BUT is the quality of the recording and the voice chosen for the audio book. Sometimes they really add to the experience, when the voice is very good or imaginative and fitting to the spirit of the book protagonist. And sometimes it is entirely off. For instance, when I 'read' (listened) Norwegian Wood by Haruki Murakami, the main characters are Japanese students, living in Tokyo, yet the young male voice is deeeep deep American, with that brash American snide sound and the long vowels and the rolling R's. It does not fit.. In my mind at least. He sounds like a chirpy popular college lad, while the protagonist is a completely different type of man. So it is give and take with these audio books. A bonus is then again that you can download them for free here, if you make a free account. 

I saw something interesting by Jordan Peterson the other night. Normally he bickers with Sam Harris on morality and religion, or tries to resist the "Left Agenda" and new pronouns being decreed by law in Canada. But now he discussed his diet. Also the uploaded version of the video, in case the original is chucked off youtube again, perhaps, in the future:

    

So Jordan Peterson says that he has depression and that he had it since his teens. And his daughter has severe arthritis. They now follow a highly restrictive diet of only beef with salt and water. No veggies, no fruits, no grains, no dairy. Just the meat. And her arthritis cleared, his depression and many other ailments too (he describes them in the video). Or so he says for now. They are both convinced that diet seems to help them both. With these trial and error things you never know what is placebo and what is perception and what is real, but I do belief that cutting out sugars for instance can have a beneficial effect on all sorts of auto-immune diseases. Scientific research supports this actually; sugar is pro-inflammatory, and recently Belgian researchers even found and published about sugar firing cancer cells on. Then there are grains like wheat which are also said to be potentially inflammatory. For healthy people that inflammation is probably not going to cause any direct symptoms. But for people like myself and so many others, who deal with inflammation and heat and pain daily, sometimes (not the case for everybody, as forums prove day in and day out) foods can cool off or fire up inflammation. So JP cutting out grains, dairy, sugar, carbs, the whole lot of it.. it could be related to a lesser inflammation load that his and his daughters symptoms cleared. Science also linked depression to inflammation recently. But... eating only meat? Even our ancestors the cavemen varied at least with wild berries and such. Eating nothing but red meat might increase the risk of bowel cancer, it might cause a lack of anti oxidants and vitamins and fibers and stuff in the long run.. who knows. It sounds a bit extreme, but he clearly lost a good deal of weight and seems energetic in his online videos. He talked about how his daughter went from barely able to walk and feeling down and looking terrible, to being a new person. It was his daughter's story that got him to do it too.  Whenever I hear about that type of diet though, I think of people thousands of years ago who used to die at such a young age. I do believe that this all meat diet is helping him, BUT..... apparently in the long run, only meat and water and salt is not enough for good health and you need at least vegetables to go with them. Also, most people going carb free feel actually tired and down, as the brain needs some sort of carbs they say. Doctors are all warning against such a one sided diet and for all we know, JP drops dead in 5 to 10 years from now. I find that cutting out wheat, dairy and sugar by itself already helps with inflammation however.

"Will we walk all night through solitary streets? The trees add shade to shade, lights out in the houses, we’ll both be lonely. Will we stroll dreaming of the lost America of love past blue automobiles in driveways, home to our silent cottage?"


Music clip of the day
    


Some photos of my skin this week (swollen face is the result of flushing for me...)



And some photos of my pityriasis now and before



 







September 14th 2018

The pityriasis rosea is withdrawing, VICTORY! Victory belonging to the most persevering and all that. My dermatologist was right and around the 3 week mark, the blemishes that had showed up first, started to fade. I'm glad I didn't scratch my skin kaput and that my immune stricken body and skin are still capable of recovering without extra help. I read that only 2% of patients are at risk of getting it a second time during their lifetime, here is hoping I am not one of those poor suckers. I read on forums many questions from people about when to know this thing is on the retreat, and nobody seemed to give a clear answer, but now I can. The rashes spread out, become more flat (less raised) and smoothen out like an oil spill. Their colour goes from angry red to brown or taupe and the skin scaling needs to be left alone and not scratched off, because new delicate skin is forming underneath. I put nothing on it, no creams, no nothing, no long hot showers either, I left the skin alone as much as possible. In my case my chest and belly are still dry and scaly looking, but more smooth again and with semi-normal skin colour. The pityriasis seems to have lowered down to the legs and feet now. One foot, my right one, is in a pretty abysmal state currently, swollen and very red, probably because I scratched without restraint after the patches first appeared, and perhaps infected it a bit. I have soaked my feet in warm salt water today and have been putting some bactroban antibiotic cream on that foot too, even though my derm said it is best to put no topicals on pityriasis rosea. But I worry my foot else gets properly infected perhaps. I'm not sure whether or not to put a picture up of the poor leg but might as well, i'll keep it a small sized one so it's not too graphic. I can shrug my shoulders about it because I have confidence now that it will fade away in a week from now. 



Day 22 




Day 23



Day 24



Poor feet over the past days



 In comparison, my left (better) foot



Even the cats find my feet shocking and laughable and shout at me that I look like the elephant (wo)man.




I was asked whether or not, despite taking anti flushing medication, and despite using a ventilator to keep my face cool, I still wake up red in the morning? It depends. Some periods I am flushed and red a lot in general, so also at night. Others, I don't wake up flushed, and my face is coolest at night. So it depends on factors like my hormonal state of the month and whether or not I ate pro-inflammatory foods the days prior. I try to stick to my healthy diet to increase the chances of not waking up red. I have a special construction made next to the bed, which looks pretty stupid probably haha, but it allows me to clip on two small clip on fans on both sides, blowing cool air on both cheeks. Otherwise I always wake up with one red cheek (not the one I sleep on strangely enough, but the one that faces the ceiling, as I can't sleep on my back and always sleep on my side). This way I no longer have structurally one red cheek to cater to during the day, depending on what side of the bed I slept on. I make sure the temperature in the bedroom is not too high but also not too low. It is tempting when you are sore and burned up to have a winters breeze cool you down, but when the air is too cold, I get extra red and inflamed. So I would say the air is between 13 - 20 degrees, depending on the season. This way I sleep really well actually, without having to get up to cool my face. This was very different in the past, before I started anti flushing medication, and after a botched IPL treatment which spiked my redness and flushing and burning tenfold. I would have a hard time sleeping and have an airconditioning system running plus fans plus cold packs, and still be very red, on fire and in a bad state of pain. The redness in this photo was just mild, compared to how bad it would get.

I do get more flushy in the evenings, but as soon as I lay in bed and make sure to have the clip on fans on and don't overheat my body with layers of night wear and blankets, then my skin is usually relatively pain free (I always ' feel'  my skin however, it always feels a bit uncomfortable, tight, on the verge of a burn) and flush free. Our body temperature reaches its lowest point when we sleep, and that might help me to not be flushed usually. However, in the evening our body temperature is higher than normal, and the blood flow to our skin also increases in the evening, warming the skin and possibly triggering our blood vessels to dilate more, as rosacea skin tends to have weaker, more easily dilated blood vessels. In the evening our body also releases more cytokines, which increase inflammation. Meanwhile, production of corticosteroids — hormones that reduce inflammation — slows down in the evening. On top of these factors, your skin loses more water at night. All of this could make people with rosacea more easily flushed in the later afternoon and early evening. Add to that also that often we eat the largest meal of the day in the evening (not everyone and not in all countries/cultures though), and aside from possible food triggers, big meals set off heat in the body once the digestive system goes to work. And we also have been building up possible triggers all day, from traveling to public transport to work places that might not be favourable for rosacea  to sun exposure etc




I have had quite a bit of time the past weeks to listen to audio books and watch things I wanted to see, as all out exhausted and in emotional zombie state from the full body skin infections and itching plus the mourning of my cat. I saw a long interview with a very inspiring woman called Esther Perel. She is a Polish/Belgian psychotherapist or psychiatrist I think, and she works often with couples who have relationship problems. She told very lively and interestingly about this. Some parts that stuck with me, were here analysis of what happened to her parents, who both survived concentration camps during the second world war, and met each other on the street, right after liberation. She said that the camp survivors she knew, could be divided into two groups, roughly: those who really wanted to live intensely afterwards, and those who were alive, but were only surviving afterwards. This second group had all their joy of life beaten out of them. She made a bridge to the theme of ' happiness'; something every one of her clients was looking for. And she thinks that happiness is the effect of something else; a feeling of meaning. Camp survivors who managed to find meaning in life afterwards, tended to feel also happy. Sometimes they even found meaning in their own suffering, by writing down their experiences, by documenting history, or by educating others. Or by having families and making sure their Jewishness was continuing, despite it all. Having a goal in life brings happiness, Esther Perel thinks. Those who drift aimlessly without a personal goal, tend to be less happy. It might sound cheesy, but that is more or less why I started with this blog, back in 2005 or 2006 it was. It felt so powerless and useless to suffer daily with this burning pain, and it felt like nothing positive came out of it. Just destruction. Destruction of my personality, my life dreams, my friendships and relationships. And by documenting it, there was at least some tiny meaning to it all. Perhaps others in the same boat would read it and feel less alone. Or could do with tips or experiences I went through. I have written diaries since the age of 8 and always have had a strong desire to document things and make them feel definitive by describing them. But the pay off is that I feel happier for doing so, because it gives me a sense of meaning. It's not a huge importance to the rest of the world probably, but it makes me feel good to extord and wring at least something positive out of this whole sappy sorry saga.

Of course, hearing Esther Perel make such a distinction between the proactive go getters and the melancholic reserved camp survivors, it also felt a bit short sighted to narrow it down to attitude. Some people have an extrovert personality type and get energy from being around others and going out, others are introverts who might have a lot more trouble overcoming such immense trauma. When our middle sister died in 2004, my youngest sister had a much more proactive approach too, forcing herself not to hang onto that trauma and going out a lot. I am the opposite of her and more of an introvert and I was sucked in deep by the sadness and loss. I don't think either of us made a conscious choice to do one of the other, but instead did what comes natural to us. Maybe the second group of camp survivors Perel described, had much worse PTSD. perhaps their unique experiences were different, or the contact of their outcome was worse. Perhaps their personality types didn't allow them to take a lot of people into confidence and they didn't talk much about what they went through, instead bottling it up (whereas talkers tend to work through trauma more by opening up and talking about it, especially when their trustees are sincerely interested and sympathetic). And thinking about the horrors these people went through, isn't it bound to haunt your mind until you die? And with regards to happiness being subjective; it also necessitates a certain measure of self-deception. If you are unable to suspend thoughts of events and consequences that are anything but desirable, then happiness is but a transient moment, if at all attainable.

    

My friend wrote: "I do not drift around aimlessly without a goal .. or without goals. Nonetheless, the fact that I perceive life—inclusive of all of Nature—as utterly without purpose, I find myself evermore indifferent to all things and action or impetus for action. (I can almost hear the character from the Clint Eastwood movie, ‘IN THE LINE OF FIRE’, telling me the same thing he told the soldier:  ‘I think you need to get laid.’)" Esther Perel also said that humans distinguish themselves from animals with regards to sex, thanks to imagination. Humans have an erotic imagination and can give meaning to our sexual encounters. And the erotic mind makes a person feel alive, energetic and is an antidote against the looming shadow of death (I guess this is a very subjective analysis, as there are plenty of people out there who start—and end—each day with the reminder that ‘all is for naught’. Those for whom nothing distracts from that reality). And some people think that sex is simply sex, and that to imply that humans have an intrinsic ability to transform sex into something other than two organisms making noises that would scare small animals and children, is silly. And that feelings concerning sex, the utility of sex for ulterior motives (sex as a weapon, etc.), is separate from the primal motive of sex—to ‘get your rocks off’. Besides, animals can have some very time consuming and eloquent mating rituals. Many bird types are monogamous, something we cannot say of humans, or mammals in general. Animals go by instinct and do what is good for the species; again, something we cannot exactly say of humans.

Esther Perel said that humans erotic imagination can also be the source of personal problems for humans; most of us want to feel something, instead of just do something; perform. And so many people have interpersonal problems; with loved ones, with family members.. :(  But relationships are a story, and every player in it has his or her own version of the story. In a good relationship, these versions of the story can overlap, or live together without clashing at the least. But when these versions are in complete conflict, and seem entirely different stories, there is trouble. Then people feel powerless, isolated and misunderstood, and this can do long term damage. A therapist can help deal with such obstructions of people get stuck in the past and cannot move forward (although for others, affecting vengeance upon would-be-oppressors-and-tyrants, including total disregard for norms of morality as well as law also seems to work wonders to avert despondency and depression. Jokes.. sort of). And therapy, like AAA-membership or rehab, can only work for those who want to change.. Those who actually have some remorse, or introspection hidden inside them already. I read that therapy rarely to never works for narcissist or psychopaths for instance (VERY different group!), because they can morph themselves into very compliant seeming patients, all the while observing the therapist and refining their manipulation techniques further. making them more dangerous. Esther says that it is not ideal to feel like a victim the rest of your life, and to let the past drag the now and the future down. Perel gave the example of the recent movie about ice skater Tonya Harding, where an ambitious mother gives very tough love to her daughter, in order to succeed. And in adult life, the daughter has a lot of problems with the past and her mothers upbringing. But both have a different version of the story and have their own arguments. The mother is played brilliantly by Allison Janney, and she really does have a story behind her choices; how her own mother never invested in her, and how she gave all her time, energy and money to her daughter in order to succeed. We'd call her a Tiger Mom these days probably.

   


A story has many characteristics, is the moral of the story; it is an illusion, as well as a truth, and a perversion, as well as an idealization. In this movie, the mother and daughter are both stuck in their version of the story. They want to build up a relationship together, but they need something or someone to make a bridge, enabling them to step over to the other side to see and feel the other persons versions of events. Both stories need to be validated for the parts of truth both stories often have. And both parties tend to be sure about their own version of events, and that type of certainty is an enemy of change. Once you have first validated their segments of truth, a therapist then usually starts to confuse them both about their version of events. Challenging them to step onto the bridge and investigate the other side. You have to give up your certainty if you want to change and come to new insights. And this sounds more rational and easy than it really is in life for most people hahaha :D And a relationship with someone else is not just about what each of them is within themselves, but also about what is between them two; what connects them and what is created when these two people come together. Because the behaviour of the one, will influence the other, and vice versa. (And when you look at families and their interactions, it gets even more complex!) We are not static, we are always transforming as humans and that is also why we aren't always behaving in the same way in different relationships. Many 'environmental' factors are influencing our own behaviour. Some compare therapy to playing billiards; when you want a ball to go in that specific pocket, then it is not enough to just play that one ball straight into the pocket. No, you need to think about what other ball to touch first, which sets a chain reaction into motion, eventually letting your ball end in the pocket, but moving all the other balls that are players in this game. Therapist, but also people in general, need to think strategically sometimes when they want to set others in motion. And we all play roles and sub-roles within our relationships; either with loved ones, kids, friends, family members and so on. And if you imagine them to be billiard balls, then you need to realize that if you move one ball, it will impact all the other balls too. (Or….one can avert disappointment by recalling how unpredictable and selfish and lazy and other ways individuals can be, forget billiard balls, and focus on creating something oneself, even if not expansive. At least in that manner disappointment is easily acceptable. Caring less has brought me a ton of peace of mind, strangely enough).

And then there are also those stories which make up our relationships and our lives, which should sometimes be left untouched, because people rely on them to deal with life. And even relationships themselves are stories, which have truths to them, secrets and a lot of silence and space between truths and realities, which leave space for illusions. Think of the man who has an affair while being married, and all the illusions he feeds in particular to the other woman. And all the illusions she chooses to belief in to fill up the many voids. The meaning of romanticism is to tell a beautiful story; a roman as we call it; a novel. One in which you, by defaultplay a very important part. So for some people, stories are very important to live by. To find purpose and meaning in; people live with these illusions in order to give meaning to their lives. Sometimes the role of husband is not the only role these men play, and sometimes they aren't always present as a father either. With some people, what you see is what you get. And with others you need to talk to 7 different people from their inner circle, to figure out all the pieces together and get a picture of this elusive person, because everyone of them knows another part of this person. And sometimes we fall in love with someone who is the opposite of us in terms of character. Looks wise science actually says that we tend to fall for partners looking a bit alike actually, but opposites in character do attract in some cases. Look at this British actor Benedict Cumberbatch for instance and his wife Sophie Hunter; cut from the same posh Cumbercloth. Could have been siblings, going by looks.


And here are some more from Tinseltown: https://www.instyle.com/weddings/celebrity-couples-look-alike#1429722 I see it around me too. Science says we are attracted to people who look like ourselves, creepily enough. We think that similar looking people are more trustworthy for instance. And even if you don't look like him or her initially, then science also says that in a decade or two later, you will look like the other. And sometimes we fall in love with someone who is the opposite of us in terms of character. Looks wise science actually says that we tend to fall for partners looking a bit alike actually, but opposites in character do attract in some cases. An introvert person can really enjoy the extrovert qualities of a partner initially, for instance. One can sweep the other up and let them rise, and the other can offer calm and stability. But whatever once was attractive because it was different, can further down the line become the source of a lot of conflict. We also expect so much from modern relationships; a partner has to fulfill so many roles in today's secularized, individual commercial society: your best friend, the person who you can confide in with anything, the one to have spectacular sex with, the one to be the perfect parent further down the line. And on top a partner is expected to make you feel content, satisfied, adored, respected and challenged all the time too.  It's too much. It's bound to cause disappointment, and then there are all these modern day apps and technologies waiting to draw you back in and look for someone different, better. (And that is also why escort services exist lol. Or why ill-advised alternatives are prevalent—multiple secret lovers, polyamory, aka ‘having your cake and eating it too’). Humans don't copulate after all simply to procreate, Esther taught us above.


Reminds me of a quote from a book I just finished, Far Away from the Madding Crowd, by Thomas Hardy;
"He accompanied her up the hill, explaining to her the details of his forthcoming tenure of the other farm. They spoke very little of their mutual feeling; pretty phrases and warm expressions being probably unnecessary between such tried friends. Theirs was that substantial affection which arises (if any arises at all) when the two who are thrown together begin first by knowing the rougher sides of each other's character, and not the best till further on, the romance growing up in the interstices of a mass of hard prosaic reality. This good-fellowship -- CAMARADERIE -- usually occurring through similarity of pursuits, is unfortunately seldom superadded to love between the sexes, because men and women associate, not in their labours, but in their pleasures merely. Where, however, happy circumstance permits its development, the compounded feeling proves itself to be the only love which is strong as death -- that love which many waters cannot quench, nor the floods drown, beside which the passion usually called by the name is evanescent as steam."

Thomas Hardy wrote well over a century ago, in 1874, and in an upper class style too, so it's indeed going to sound like Chinese for many people these days. I think he said: They were having feelings for each other, but because they were long standing friends already, there was no need for extra words to underline this with warm or flirty words. (The type of words you do use with someone you just met and feel an attraction to). When they first met in the past, they started off by getting to know the unpleasant sides of each others characters. They only later got to know the best sides of their characters and this allowed a fondness and affection to grow (in contrast to when you first meet someone and they only show you their most attractive sides, only to find out later on what unpleasant traits they were hiding from you). And based on this very realistic view of the other they build a rock solid friendship. He says that a comradely type of friendship usually is formed when people have the same habits or aims in life, but that it is very rare that this friendship is lifted up to love, because men and women don't connect romantically over their hard work, but over shared pleasures. BUT, Hardy says, if good circumstances allow for it, some people are lucky enough to get the real deal: a relationship built on such an increasing friendship and knowledge of first the others bad sides and then increasingly of their beautiful sides, because such a relationship is the strongest he says. Strong as death. Then he describes such a strong love; the type which inner fire cannot be extinguished by water, it cannot be drowned by floods. Compared to such a strong love, passion is like fleeting steam. We all know what good relationships should look like, but honestly; how many of our past relationships formed with someone we first saw just as a sort-of friend and who we first found unbearable, only to later fall in love with? That is not something that happens a lot and not what we all know to be what a strong relationship should be like. I only know of Elizabeth Bennett in Pride and Prejudice and other gothic heroines (Jayne Eyre too) to fall in love like that :) These days its all about first lusty impressions, think of that ghastly Tinder swipe app thingy and the speed dating. So many relationships, friendships, attractions are built superficially. I can’t remember who I was reading, maybe Adler, but that author was discussing how men become so enamored with women based on looks, and will fantasize way after seeing a women about being with her… filling in the gaps in the most favourable manner. But looks don’t determine what she will be like personally, or even in the bedroom. He asks.. how many men have been with a woman solely based on looks, yet the intimacy is bad. And to the inverse; how many men have brought home an “unattractive women” only for them to surprise them in those respects? But the superficial approach to finding a mate did work for a long time, that’s perhaps why men generally aren’t into really fat girls; that doesn’t match with someone to create healthy offspring with, or someone able to take care of that offspring.

I have done this thing in the past a few times (and trying hard to no longer do it!) but apparently many people resort to a strange trick when they are in the midst of conflict and an argument: they want connection and peace, but instead are being provocative, screaming that it is maybe better to break up then, as if they are consciously derailing the whole undertaking. But what really is happening often, is that in the midst of a lot of insecurity and chaos, people are trying to regain some control again, in a pretty destructive manner. You are without control, deregulated, and thus you shout: I NO LONGER LOVE YOU. But what you are really saying is: I still have some control over something. I still have something to say about you. And the most curious and fascinating part about this: if I would say such a thing, then I know deep down that I am just saying that because I feel rotten deep down, and that I don't mean it. I was angry within the context of this situation.. But when YOU say that to me, that you no longer love me, or want to be with me, then it means you are a person with a bad character. My behaviour is contextual, and your behaviour says something about your personality. A lot of us think this way apparently, which was fascinating for me to find out. Don't we always think such irrationalities are down to our specific craziness? The same for therapy; individuals or couples rarely start therapy with the premise: I want to find out what I am doing in my life that is problematic for the relationship. Almost all of us step into it with the message: I am an expert when it comes to my partner, and this is what he/she is doing wrong in my opinion. Fix it! I will tell you what is wrong about my partner, and you are going to change this. But coming to therapy with a certainty is not the right approach; you need to come there with your responsibility. It takes two people to form a behavioral pattern. In relationships, so many emotions are formed and building up, and pride, anger, resentment etc are all working against your own sense of responsibility to fix it; to find out the other persons story and version of events, and create that bridge (cheesy as this metaphor is). A good therapist tries to bring back memories of the start of the story; the way in which they fell in love. The things they once loved. Sometimes our dreams turned into disillusions further down the line. If there is nothing left of that initial feeling, then there is not much to work with anymore.. (I have observed such an approach and it does not work for everyone or at every situation.. Also, the couple in therapy commonly does not resemble the couple at the start of the relationship, and attempting to ‘rekindle’ care for one another based on past feelings and past behavior can also be a recipe for disaster. Some people change beyond recognition over time, and trying to imagine that they are the same as they were a decade or so ago, erasing all the hurt and stuff that happened in the mean time, could be the equivalent of chasing a ghost in some cases).

And the manner in which people argue or fight is also fascinating, and something we see less and less in the people around us, thanks to the pressure of this social media dominated world to keep up appearances, and to only show the glossy smiley side and facade of life. Back in the days, the entire village/community was up to date about who argued with whom and what was happening behind closed doors. But today, we often don't even know what is going on in the relationships of our friends and relatives. You hear some have decided to get a divorce, and you never saw it coming. Because all their outwards communication was that of happiness and perfection; the only message society seems to value these days, outside of some close and trusted friendships perhaps. I loathe this aspect of modern society. There is fake news all round; everything always goes great with everyone. This only adds to the sky high expectations people have today of life. And relationships change so quickly in this time. There used to be fixed rules in the older societies but all of those are gone (think of one marriage during life to the Tinder-generation), and frankly nobody really knows the rules of this new society. It is a shame that we no longer see and hear what is really goes on behind closed doors, because often it acts as a massive mirror which we probably all need. Don't we all think sometimes; am I the only one who has these type of fights or relationship problems? Dos it also happen to others? How do others handle these things? This is a very interesting channel, where couples are confronted with specific questions for the other, and they have to answer is truthfully. It is real, not staged and it is very insightful I think. This particular clip is eye-wateringly painful to watch:

    

Very painful... she is so nervous with her laughing, and you can see how hurt he is. And upset. What is the role of sexuality in our modern relationships? For a long time sex was just a right a man had within the marriage, and it was a duty for the wife. Now our sexual relationships exist mostly because of our connection and for pleasure. There is a lot of talk about the power of men and the sexual power of men, think of the metoo movement), but a clip like this one also shows there is powerlessness for men, and that men have vulnerabilities too, in different ways than women sometimes. There is this unfair idea that the sexuality of men is one dimensional, biologically driven, that he always wants and is prepared for sex and if he doesn't want to, he is not masculine. And the woman is psychologically driven and subjective and her sexuality is complex and contextual and psychological and ever changing. But this is not a fair model. It never was like that anyway. But some sexual vulnerabilities of men are highlighted in this clip: being rejected, not performing well, or being unable to satisfy her. Generally speaking, stereotypically the woman is afraid of being raped, the man is afraid of being humiliated. This man is worried about being or becoming impotent, he is taking medication for a medical issue and they are affecting his potency. And what is highlighted most here is that the man is vulnerable in that he has no complete control over her pleasure; he never knows 100% sure if she has an orgasm or not, so he has to..... trust her. He must believe her, but he also needs to know, and she is trying to protect him in this clip, but by doing that she humiliates him entirely. And the more she is laughing (sheepishly), the more he feels humiliated. She doesn't seem to get that. This conversation is not that often held by people, but it is in the heads of many. She has a lot of power over him, because she has the truth, which he wants to know. In the west, the emphasis is so much on the powerless women versus the powerful men, and this is not a fair generalization. This clip shows that things are much more dynamic and subtle. Power within a relationship is always dynamic and every relationship has shifting power struggles. Between partners, between children and parents, between employers and employees etc.

Women had at least 50 years to overthink and adapt to a changing role in modern society, but men had far less of this. There is still a very rigid code when it comes to raising men; one that pushes them away from their feelings, that makes them competitive. They should not have fear, they should not be dependent on others, they should continue even when they have pain. Men have social/cultural pressures of what is expected of them, just as women have (other ones). Hopefully this century there will be more attention and space for them too, in this respect. Many people fight within their relationships in specific patterns that always come back. For instance; one partner is taking the responsibility of addressing the problem and trying to open the wall on the other side. But the other partner is offended and does not give home. Looks away, sulks. But stays put! Does not leave the conversation, but instead watches like a hawk how far the other is willing to go in order to appease. He/she lets the other know not to be easy to please, but what was that exactly you were just suggesting? But if such a pattern repeats itself for yours, then the other partner can easily tire of the thing. Esther Perel has an interesting podcast too which you can check out here. She also gives very popular Ted talks. 


Music clip of the day

 





September 11th 2018

I'm still not doing great, in fact worse in some respects than during my last update. Firstly, those rashes. They have spread pretty much all over my body by now, except for the face (thank god) and soles of hand and feet. Now after 3 weeks they seem to flatten as they spread out, and dry up and slowly fade in colour from red to brownish...  I really worried that these spots could be something like psoriasis guttata or something along those lines... Something fired on as an auto-immune condition, something possibly chronic. But the specific pattern of my skin rash mimics pityriasis rosea.. The one big patch initially, then the quick spreading, the locations (trunk mostly, then spreading out), the way in which the spots are healing now with the center becoming more pale again and a scaly ring around the spots. I am fairly sure it will be gone in a few weeks from now, it finally seems on its return, even though it looks more widespread (in size) than ever. But it is still a bit nerve wrecking. I have watched my face like a hawk, and only along the hair lines on my forehead appeared some scale spots recently, but I seem to have been spared from frontal face spots, thank god. Which would be another sign of this being pityriasis rosea, which rarely affects the face. I do have spots all over my neck and the back of my neck. My arms are also covered. But they seem to have stagnated now and as I said, dry out and slowly fade. Have had this for 3 weeks now and am expecting things to take another 2 weeks for clearance. In the meantime I'm still scratching my skin with plastic forks in the evening, aaargghhh. I am so horribly itching at night and in the evenings that it's no longer funny. I'm scratching despite knowing it makes the itching worse, and the risk of scarring bigger, but at this stage I rather injure the skin than have it itch, but then the healing process will make it hurt more, so now I am putting cold packs on the skin all evening long to try and numb the itching.. I know, too much info, but it is what this shitty condition does for many (I read some forums where people with pityriasis rosea complained it was the worst thing they ever had to endure in their life... Which probably says more about the limited hardships they have yet endured than it says about this condition, but nevertheless). If it were just the rashes, ok... Still not nice but the itch is what drives me insane. I normally sleep nine solid hours a night, but have all of the past weeks slept no more than 4 or 5 hours, due to the itching and discomfort. I'm knackered. By day 14 this rash was still spreading further down the entire belly area; buttocks and arms are also full of these critters now. I had to think of my baby sister, who had really bad childhood eczema. My parents told us later that they had to do turns of staying up at night, sitting by her bed as a baby and toddler and until age 5 more or less, scratching and stroking her itchy skin, while they had to tie her hands down, or else she would scratch her skin open. Horrendous, also as parents to see your baby suffer like that. Luckily my rash is supposed to last only a few months, fingers crossed. But I have a new respect for anyone dealing with itchy skin diseases and I will try to remember this when I burn and flush again and am feeling sorry for myself. I honestly rather burn and hurt than itch.

My friend wrote me thoughtful things. The rashes reminded her of a girl who has an online media presence, who has something different (and chronic), called epidermylosis bullosa. She shares photos of her terrible skin sores on instagram. A beautiful girl who deals with a pretty terrible skin disease, yet shows her skin to the outside world with her head up high. Someone commented on one of her full body rash photos that it looks like her skin is covered with little red rose petals, which I found endearing and sweet to read. I have so much admiration for anyone dealing with these inflammatory skin diseases, may it be rosacea or eczema, psoriasis, epidermylosis bullose and erythromelalgia is more of a blood vessel problem but also makes the skin burn and turn red; also a hellish condition. As my friend wrote: "With so many chronic illnesses its like a merry go round of suffering or complications or extreme restrictions or likely all of the three combined and more. It seems that our bodies are always doing something to us or paying us back for trying to do something outside the limited box we live in or even god forbid have a little fun! I think you can probably relate? :/ I really hope we can have a next life, there’s so many things I have interests in and I think you too, that we don't get to experience or do." I suppose with our lives and the constant need for trigger control, fans blowing and lifestyle adaptation, we do morph into a different person with different wants and needs than we were before rosacea started, and than we would have probably been without rosacea. There are limits everywhere of what we can do and then within those limits you look for the best day to day lifestyle that keeps things calm and won't make us anxious with a flared red face.




Then to make matters much worse, my cat Petya has died very unexpectedly. Very sudden also. Hardly any signs, other than that he was a bit grumpy for a day and wanted to be left alone while he slept in a snug spot upstairs. No howling, no signs of pain, no vomiting or any other sign of illness. Just died in his sleep, as I found him snugly curled up in sleeping position, very peaceful facial expression. I've been literally crying for 5 days in a row. I do everything for my cats. The best quality food, specially made for sterilized cats. Only outdoors during safe hours and with GPS trackers on their collars, indoors during evenings and nights. Regular vet checks and all round keeping a close eye on their well being and behaviour. That is why this has hit me like a road bomb. Petya was happy, bouncing, healthy seeming; he wanted to play every day, he went on walks with me, he cuddled up to me, he purred, he was eating very well. He never seemed in any discomfort. The only thing I noticed was that after I had recently adopted him in January, he had not de-stressed entirely.. He had been in a shelter for 2 years prior and had been super stressed and unhappy there 😞 All he did was crawl around, hissing and hitting at the other shelter cats, constantly in war modus, ears flat and clearly distressed. They said he was very unhappy there and that nobody wanted to adopt him as he was so unfriendly seeming. My heart still breaks for him now that I type this. I loved that cat and had no problems with his temperament; I reckoned he would act much better in a calmer environment with more personal attention and less cats around. I felt so bad for him that I took him home right away. He loved having his own space with me and he loved laying on my lap or bed. It seemed hard for him to relax in general however, despite him seeming very content with his new life. He was purring a lot, playing with his toy mouse, cuddling me, following me around happily, and having his own safe room where he would often retreat for peace and quiet. He gave me head cuddles all the time, when I brushed my teeth he would jump on the counter top to rub his head against me and play with the toothbrush. He was the one who gave me that scratch under the eye, but that was in the first week or so of him being with me. After that he never hit me again. He didn't like the other cats, but they are often outside and I kept him and them often separated unless he was initiating being around them himself. Petya slept next to me when I worked on the computer and came with me on evening strolls outside. He was by all accounts happy, very loving. Yet, his tail would always tremble in a nervous way..

So I visited the vet with him 6 weeks ago, to ask him about natural or medicated ways to calm him down more. I explained that Petya had been initially nervous around other cats, but that things were improving; they could calmly be in the same room all evening now without issues or stress. But Petya never seemed completely relaxed, despite all the safe spaces and cuddles and adapting to his needs. His tail was like a seismographic meter, always straight up in the air and trembling and I worried that he could not relax anymore after his unhappy years in the shelter. Thus, the vet had done a full body check on him 6 weeks ago and suggested trying a supplement first, called Zylkene. It could calm him down more, and if this didn't work we could try something more powerful. Petya seemed to have subtle improvement on Zylkene. The last week I had tapered it off as I wasn't convinced it was doing enough for him, and I was planning another vet trip to discuss a plan B. When I called the vet in tears about what had happened, he said he thought that Petya passed in his sleep from heart failure. The vet thinks his heart had endured too much stress for too long and now that he relaxed and felt more at peace, the heart could actually show the damage. Something nobody would have picked up on with simple check ups.. I went to the shelter and asked the people there about all this too, in tears, and they said he had been checked by a vet there too, although only superficial stethoscope check up. That these things happen... Some of their cats pass from sudden death syndromes around this young age of 3 or 4 years old, unfortunately..

The vet said the same and assured me that everything pointed towards a peaceful sliding away during sleep. But I am paining myself with flash backs and torturing myself over missed signs and what I could have done more for him. And I miss him. It was a very unusual cat with such a strong personality. He was a very lively, boisterous and dynamic cat with a huge personality. I have no kids, so my cats are important to me, as the individuals they all are, all with specific characters and specifics about them. I've been feeling very down to be honest, there seems to be a lot of loss going on as we age. I will be 39 next month and it is a cliché, but as we age, the losses of life do stack up. And some carry these ghosts from the past with them more consciously than others. I made Petya a beautiful little grave and visit it every night. I hope his spirit (if such a thing is even possible) still visits us and lingers around. So all in all a shitty month... Life sucks at the moment and I am wondering sometimes what I have done in general to 'deserve' all this ongoing shit. 


Despite the many tears, my rosacea has calmed down though luckily. But at the height of the pityriasis rosea outbreaks, the full body inflammation must have gotten to my rosacea too, as my face was flaring and burning really badly. It was also warm and humid weather and that is the worst for my flushing. Dry weather is far better for it, even though humidity soothes my skin which is on the dry side. But somehow I flush like mad from warm humid weather. I had to bike to town last week around 2PM and the sun was shining. I managed to bike mostly in the shade, but had also stretches of road where I had to bike in the sun; no ways around it. I only wore a light coloured small brimmed hat and came back home all flushed and burned up in my face. I could kick myself for going out like that in bright sunshine and at a time when the sun still has strong UV radiation, and also for not overcoming my vanity and for not just wrapping up with a coolibar scarf over my face. Will I EVER learn to avoid the midday sun? I can't put sunscreen on and a hat is no proper protection.. I had scrubbed my face the week before lightly, so my skin was extra fragile and susceptible to sunburn. The day prior I had been in town with a friend of mine (from 14;30 till 18:00) and had no skin problems at all, despite catching some reflected sunrays too then. A usual those experiences pump up my confidence and make me think I can do as I please as long as I wear a hat. But this day, going by online UV info, there was a UV risk of factor 5, meaning there was a risk of sunburn at that time of day after only 20-25 minutes of sun exposure. That applies to people with normal functioning skin. On the other hand, I didn't have 25 minutes of ongoing unprotected and full sun exposure. Nevertheless I ended up flushing and burning all night, despite using the fan and airco. Then while I was cooling my skin with the fan on and had a burning face still, there was a sudden electricity cut. Just my luck. Neighbours were all out on the street when I opened the front door, and it turned out to be a local energy problem. After an hour of waiting I was too burned up and took my fans and stuff on the bike to my dads house, who lives in another part of town where electricity still worked. He took an old photo album out, mainly to talk about my middle sister Jennifer, but he had stored some old photos of me too. Ones I hadn't seen in more than a decade. I made some digital photos of them. This one below was taken while I still lived in a student house; my downstairs neighbour was a hobby photographer and asked me if he could make some shots. I said fine, but that I couldn't have any powder or make-up on my skin. I don't think now that I needed it at the time, it is hard now to realize I actually had rosacea already back then, based on how my skin looked in this photo. But I did flush often in the evenings or from specific triggers.

It seems strange to me that subtype 1 rosacea with skin redness and flushing burns and goes so deeply red for some, and goes red but doesn't burn for others. It makes sense that there is variation between type I and II and III but it seems strange that two people with predominantly severe flushing can have either debilitating burning sensations, or no pain at all, despite looking the same to others. I have a feeling that long term flushing and inflammation of the skin can tick off the facial nerve endings after some time, for some. And then even a mild flush can trigger these nerve endings to signal pain and heat to the brain perhaps? I can only imagine the flushing triggers the nerve endings and that after years of chronic flushing or inflammation, the nerves can be really triggered to sense pain all the time? They surely have a memory for pain, just as blood vessels have a memory for dilating..... Still, it baffles me that someone can have that level inflammation, increased blood flow and skin redness, but not feel that typical hot burning skin pain. I can understand in mild cases, but not for severe flushers. I feel this is sometimes overlooked, and especially rosacea patients with severe nerve pain can feel misunderstood by others; I know people with moderate or even minimal redness, who suffer greatly from burning sensations. I had this when I was the age at which this photo was taken. I wear no make-up other than some mascara and lip liner and I had a lot of pain and burning sensations when looking like this. My mother and sisters thought I was mentally unstable and imagined it all back then...

Day 12


Day 14


Day 18



Day 20



Day 21







September 1st 2018


I've had a depressing horrible week. I look like a pink Dalmatian now and am miserable. The rashes have gotten much worse over the past days, basically spreading and spreading, and my belly area, chest and upper legs and arms are filling in with a vast ocean of smaller itchy inflamed skin lesions. It itches like crazy and it looks disgusting. I hate how it keeps spreading and how I am restless every morning to check if it hasn't gone to my face. It is already creeping up all on my neck. It's frightening to see how fast it spreads and fills in. I dread checking my skin each morning. Unfortunately the rashes have started to itch really badly after a week and I worry that all my scratching (I know, not good) is making matters worse. I now put cold packs on the itchy rashes to stop the itch. And to make matters even worse, I developed a red rash under my eye on my left cheek last week. Quite a big irritation red spot. I'm not sure my face rashes are the same as the body rashes; they could also just be regular rosacea flaring up, and thus inflamed skin patches, but I hate it because as you know I do everything possible in my life to keep my skin calm and not inflamed. And now I have a body covered in this inflamed stuff. I worry constantly that my rosacea is going to get worse long term from this. Anyway, I saw my dermatologist the other day. I didn't have an appointment and usually there is a 3 week waiting time, but I thought; if I go there and show his wife, and secretary, my rash then she might sort something out about him seeing me this week still. She saw the rash and said OUCH and discussed it with the doctor and said to come back later in the day; he would look at it. That was great, although I had to wait quite a few hours and it was very warm. But glad he could see me. He checked it and first mentioned psoriasis but then quickly mentioned pityriasis rosea. That it matches that exactly, including the herald patch I first saw. Only one of the 100 or so rashes that I have looked like psoriasis to him, and all the others looked like textbook pityriasis rosacea he said. He also said there is nothing I can do about it 😞 Every cream you put on it irritates the delicate skin, including steroid creams (which I won't use anyway), so it is best to leave it alone according to him and it should go away within a month or two. I got some extra antihistamines for the itch. The only thing he could recommend that might help speed the recovery up is sun exposure. I could use my UVB narrow band lamp for it, or just sit in the sun... I asked: how about the rash on my face? He said the pityriasis rash usually spares the hands, feet, legs and face. Then he added: "Any skin that is exposed to the sun is spared". I said uhmmm, my face is always covered from the sun....so I have a higher risk of it also going to my face? He still didn't think it was anything but a rosacea flare on my face. Which was a relief to hear. So your hands and feet are not supposed to get it either, but the upper part of my feet are COVERED in itchy rashes since  yesterday... Not the soles of the feet though. 

Anyway, I am sort of relieved to hear (again that) it is at needs to run its course and yes it is a self limiting thing and not psoriasis or something chronic. But is is a nasty rash he said. Pain and flushing is bad, but itching I came to experience, might be even worse to have to endure.. I sleep poorly as so itchy and not being allowed to scratch when all you want is for the itch to stop and the pain to set in instead... is hard. I had to travel as well yesterday and you actually see the spots well now on my whole chest and neck and arms. It looks pretty disgusting I think. The patch of redness I had on my cheek for a few days made me super super stressed out, which in turn makes me worried that the stress fires up the pityriasis rosea in turn, but it seems to have calmed down again on my face the past two days. But the rest of the body seems fair game for this condition, I have hundreds of tiny itchy raised dots on my lower arms and on top of my feet too now and they itch also very badly. I put them under cold water sometimes to help stop it. And imagining having this itchy nightmare for another 4 to 6 weeks now is daunting. 


 Music clip of the day
    






Day 7



Day 9






Day 11




Day 12







August 23rd 2018

My own GP was not available but her colleague emailed me back in response and based on the photos I had sent and the description, she suggested it can well be something called 'pityriasis rosea'. Which would be a harmless, self limiting condition that resolves all by itself within a few months. Its description seems to match my symptoms completely; Pityriasis rosea starts with one pink/salmon colour round patch of rash on one spot (for me it started with one big oval pink patch on the breast), and then within a day to a week more and smaller round rashes appear, mostly on the torso (chest/back) and sometimes the upper legs. Just where I have my rash (I have quite a few on my neck too though). The rashes itch sometimes, but not necessarily and often not at all. Mine hardly itch, only rarely one or two itch a bit for a short time. Pityriasis rosea tends to be seen in younger people, 15-35 and for no clear reason, going by the Dutch information sites I read. Sometimes they are thought to be a reaction to a viral infection, sometimes the effect of a weakened immune system or a reaction to a bacterial infection even. On the English written sites, dermnet for instance, this condition is linked to a reactivation of herpes viruses 6 and 7. I for sure had what we call 'fever lip' in Holland when I was around 14 or 15 years old; a herpes type that gives a blister in the corner of the mouth. I think we called it the kissing disease at the time. But whenever my immune system was low in my youth, for instance when I had the flu, the little blisters would come again and then disappear again. Maybe this is another way in which the herpes virus plays up now, I think I read at the time that it lays dormant in the body for most of your life once you have been infected. Ugh.... Can't believe I'm dealing with this again in another form in my adult life. Pityriasis rosea should go away by itself within 12 weeks. In the first 2 weeks more rashes can form, but after 2 weeks there shouldn't be new ones popping up and they should start to disappear again. Phew!! And usually you only get it once in life. I googled it and it looks just like what I have, including the greyish skin scaling around some patches. But it sucks to look now like I have the plague. No more sea swimming for me this summer I reckon :( The best part of this all is that pityriasis rosea doesn't need any treatment! It should go away by itself over a few months. So no creams or potentially irritating triggers and its unlikely I read, very unlikely, to spread to your face. I had a couple of small red skin outbreaks on my cheeks, nothing bad just little red pinpricks and have been inspecting them with a flashlight to be sure they are not the same raised red patches as on my torso. So far they don't seem to be. I do feel very tired and a bit like I have a mild flu. Just very tired despite sleeping nine hours every night, and usually having energy for the whole day. 

Here you can read a post from a healthy living blogger who thinks her diet changes made her pityriasis rosea go away. The photos she shared of her rashes look just like mine, she also added a nice looking photo of her bare back. But all medical info I could find says that this condition resolves all on its own, without the need of any creams or potions or pills. The body just cleans it up in time (as soon as 3 weeks up until 3 months) and your skin will restore itself too. So I am not really convinced that diet 'cured' her.. she might have seen the normal recovery from this innocent condition and because it coincided with her new diet, made a (mistaken) causal connection. Although for now I'm stuck with these rashes and I don't know if the theory also will apply to me in the time to come haha, I really hope so. I'm already eating the most healthy and boring diet on the planet, can't imagine having to tweak it even more. This is also a good scientific article on pityriasis rosea, and shows many photos of different atypical subtypes. I googled it and it looks just like what I have, including the greyish skin scaling around some patches. 


My skin currently in all the left hand photos, compared to, on the 
right, the official pityriasis rosea photos I took off the net:
 






The rashes also seem to get worse over the past days :( I've got twice as many on my belly and chest now as I had some days ago, and the remaining ones seem more red. My neck a few days ago and now:



 Music clip of the day
    









August 20th 2018

Ugh I'm covered in red rashes, all over chest, belly and thighs. Not covered as in one non-intermittent sea of redness, but about 20 red round rashes on chest and about 10 on belly and behind. I don't know what they are, I noticed the first about 4 days ago on my chest and initially googled if it could resemble an inflammation-type of skin cancer or breast cancer (yeh, talking about being a hypochondriac), and when it looked nothing like that, I forgot about it. Until today when I could not miss the big red markings. They don't itch, they don't look like eczema or psoriasis to me (but what do I know...) and they are spreading it seems. I have some in my neck too now and on my arms. Legs so far are clean. I'll add some pictures, trying to not make them too gross. I wonder what causes it. I went swimming in the sea last week, and later read that it isn't too clean now with the months of heat and the large amount of humans who have already bathed in it. I always think of sea water as really clean (salt kills bacteria right?) and good for the skin and for skin conditions like eczema or psoriasis, but it probably isn't totally clean lol when you think about it (usually Id rather not think about it and just be satisfied that it is clean from the high salt content). Anyway, I don't remember seeing any of these patches when in bathing suit, so they must have erupted later. Maybe as a result of something in the water? Maybe the cats have fleas and somehow I am having an allergic reaction to a bite? (But don;t flea bites itch?). I'm giving them an anti flea substance in their neck every 2 months or so, and despite being careful not to touch it later on or rub their wet anti-flea gel necks to my own skin, who knows where they licked that stuff in the end. The idea of the neck spot is that cats cannot reach it with their tongues, but paws can still rub it over the rest of their fur. I did cuddle my cats a lot and picked them up, could my skin have caught somehow had some of the anti-flea gel? Or maybe it is something entirely different, I googled measles and it looks quite alike in the mild form. Then there are water pox, sea fleas, bed bugs (I religiously wash my bed linen very regularly and have hypoallergenic mattress covers and there are no cats allowed in the bedroom..), heat rash, regular allergies, eczema, folliculitis... I sent photos to my GP's email address, she often responds quickly over email but she won't be in until tomorrow. Alternating working days etc.

My friend suggested sea lice. Apparently they can be present in natural sea pools (not chlorinated) with no waves, so if the pool is still the water accumulates lice from birds who have been in the water. Not everyone gets in trouble from swimming in such water, but people with sensitive skin or atopic skin problems might. Or it could be even an allergic reaction to being bitten by (sea) live. She also suggested it might be chicken pox or shingles or measles. I already went through chicken pox as a kid though. And mine don't itch much and aren't fluid filled either.. She thinks the bumps look kind of like bites of some kind, as they're not all joined together. It looks more pronounced and separate than a heat rash in her view and it doesn't look like acne or infected. With measles there might be  more of a viral component to that too and you’d feel unwell like you have the flu and feel feverish. I don't feel bright and sharp actually, am very low energy and with a flu-like feeling the past 2 days, but that could also just be general tiredness. I get tiredness a lot, on and off. Measles, we also went through that as kids and got vaccinated for everything, but I don't think (or my mum said it wasn't) a severe measles attack, just minor. Perhaps it can re-attack later in life with adults with a weakened or malfunctioning immune system? With regards to sea water, she always avoided swimming in boat harbours due to petrol from boats building up, which is so smart and not something I ever thought of prior... The sea I was swimming in actually had live jellyfish in them, I waded around to avoid being in their proximity.. So now I also have these red little round skin outbreaks also on my neck and am always worried about anything getting on or spreading to my face.. I started putting both ketoconazole and antibiotic cream on them, so if they either are bacterial or fungal, then they should improve somehow.. As long as they stay away from my face, the rest should hopefully go down with time. I'm washing all bed linen and mattress covers again now (already did last week ) but washing it at highest temperature and hoping it is some reaction to the heat or the sea water or something 😕 I don't think they are hives, as they usually itch and I get hives every winter nowadays from cold urticaria, and they also look like hives; fluid filled, raised and itchy. These don't they are more like red little blisters; little red welts on top of my normal skin. Basically, I just don't know. As I wrote, I had a few of them a couple of days ago but now I have about 20 on my chest area and then some on stomach and thighs and a few on the arms. I'm sure the GP has some ideas (or so I hope), perhaps more info tomorrow.




Other than that I've been OK I suppose.. Still dealing with summer temperatures and in general I seem to be more red in winter than in summer. Which sounds very strange to my parents and friends' ears haha. 'Weren't you always too hot?' But through forums and online groups I know more people like me, with red hot skin flushing, who have calmer skin in summer and much worse flares and general redness in winter! I think it has to do with several factors; in winter the outdoor temperature is a lot different from indoor temperatures, so when you go in and out of places, your skin deals with constant temperature fluctuations, which sets the blood vessels off to flush. Read about the warm room theory to hear more about this phenomenon. Cold weather also tends to constrict the blood vessels in the face more extremely to preserve body heat, and then when you enter a warm room, the capillaries in your skin dilate rapidly, which puts more pressure on them. Maybe that is why some people in cold and wind swept climates (think of Mongolia) have more often a ruddy reddish complexion. Once you have visible broken veins on your face, laser or IPL can remove them again, and taking vitamin C is often suggested as way to strengthen the blood vessels. Either way, in summer I am often not as flushed and red, as long as I don't go in the sun directly and keep a breeze on my face (fan, natural breeze) and take my anti-flushing medication, my skin can be quite pale in this season actually. I do use the airconditioning however to keep indoor temperatures around 20 degrees. But even when it rises to 22 degrees Celsius for instance, I am usually fine as long as I have my fan. Whereas in winter, going into a room that is preheated to 22 degrees, means a lot of flushing, burning and red hot pain for me usually. Natural warmth seems to be different for rosacea skin than artificial heat. Indoor heat is a killer for my flushing and even above 18 degrees then is too much. Outdoor heat, well it depends if other factors are flushing me up (hormones, skin plucking, diet) but if my skin is calm already, then even 25 degrees Celsius outdoors with a fan on can be fine for me. Unless it is humid 25 degrees, then it is much too hot. Humid heat triggers my flushing whereas dry heat doesn't as much. In winter I get cold urticaria too so might perhaps just react bad to very cold temperatures I suspect and then the extreme temperature differences indoors and outdoors are horrible; stepping out in the cold, coming back into a warm room and whoooosh, I'm like a forest fire. Picture; my skin in summer versus winter:


I have written before about how my skin doesn't seem to build up normally. My dermatologists think that the decade + of skin inflammation from the rosacea and flushing have disturbed normal skin barrier function. That my skin lacks a strong skin barrier therefore, making it very sensitive, easily disturbed (redness, burning, flushing) and it does not really handle many topicals, either moisturizers or make-up. So I put nothing on my skin normally, just wash it with bottled water and cotton pads, gently, every evening. No skin care, aside from some diluted jojoba oil around my mouth and eyes maybe once a week. I have worn make-up 4 times in the past decade. Part of this not normal skin barrier function seems to be that dead skin cells just build up and up, without naturally falling off. I also don't rub my face with a towel or scrubs like 'normal' people, but I do wash it and the old dead skin after a while becomes visible on my skin... But it is a delicate balance; after I scrub my skin and have red, flushed, fragile skin, it takes at least a month, maybe two actually, to be back at the stage where a layer of normal looking skin covers my face. Only when you look really carefully close by you can see the dead skin layer (it sounds more yucky than it really is or looks), but I love this stage as even when I feel a flush burning, it is only coming through, visibly, for 25% or so. The layer of dead skin also protects my face from a lot of stimuli it seems and I just flush a lot less. BUT... there comes a point where the layer gets too much and darkens a bit and then I need to start rubbing or plucking again. Once I'm busy with that, it is very tempting to go overboard and keep going on and on, only to find out soon after that my skin is looking way too raw and was scrubbed off its protective layer entirely :( 





In photos: 

The best stage of having some protective layer, but no dead skin cell build up being visible yet



Process of face scrub and the 7 days afterwards:
Those pictures are all taken with a cooled skin, no flushing. It really takes about a week or two, all in all, before my flushing is back to old low levels after scrubbing my face like that. I like to just pluck the odd old skin cells off with something (not too) sharp, instead of roughly scrubbing the whole face, but after a while it just has to happen :(






Music clip of the day

    





August 15th 2018

Photo with make-up on and one with active rosacea flaring :/ (flash back to my winter flare!). Am working on a couple of longer posts, new day-to-day update coming soon. 



And all is also going well with the cat brothers. "The Karamazov brothers; for all your deconstruction or hitman work"









August 12th 2018

Quick update; the cat scratch under my eye seems mostly healed nowadays, I can see the faintest of colour difference now but I'd probably need to circle it to show you. Thanks to the excellent advise of my friend John probably, who urged me to not let a dry scab form once that scratch aged, and to keep it covered with a small layer of Vaseline all the time, after disinfecting it for a week with an antibiotic skin cream first. And my chin is not as red and easily flushed anymore as right after I tested ivermectin/ Soolantra all over my chin. But it still flushes more than before. Just not constantly anymore

 

You can still see a faint red line after a good face scrub, when there is literally no dead skin cells covering it, but it is minor:






Love this Danish blogger who is currently also suffering from the European heatwave :)
Taken from this youtube video of her. She always cracks me up with her quirky cynicism.









August 5th 2018

It is warm.. But as long as I can stay in the airco and cool of the house, my skin seems to behave just fine. In fact, much less red or flushed than I am in the cold of winter.. So strange. I like to share a wonderful toothpaste I use. I was tipped off by a rosacea forum member, antwantsclear, who wrote me a year and a half ago "I saw your problems with toothpaste on your blog. I thought you may be interested in the toothpaste I get from mouthulcers. I started buying it to stop mouth ulcers but then realized it helps with the rosacea as well. It's called Squiggle toothbuilder." Thanks again Ants, I love this product! So mild, and it has a ton of xylitol. I use the fluoride free green one during the day and the fluoride version before bedtime. No flushing or skin reactions from these toothpastes and I haven't had a cavity or tooth problem since using it (neither much before either I must add but my fluoride-free trials did result in some cavities with all the problems that posed for my rosacea, so I am definitely back to fluoride now!!). 








August 1st 2018

I have asked my pharmacist if he can come up with an even more gentle formulation for topical ivermectin, bypassing the propylene glycol that is now used in all pastes and gels. Ideally, I wanted to know if I can use ivermectin pure powder, measured in the exact right dose and dissolved in water, and splash it on my face like that. My skin handles water well, but creams or gels not so well.. I did this with brimonidine when I trialed that some years ago. Unfortunately the pharmacist said this is absolutely impossible with ivermectin. It cannot dissolve in water, and needs another stringent type of agent to make it dissolve. They use ethanol (an alcohol that can be drying on the skin, but it still the most gentle alcohol out there for skin products he stated) and also propylene glycol for extra carrier power. So the mildest options are either Soolantra cream itself, or an ivermectin horse paste with as little ingredients as possible. For me the horse paste made my skin burn and so did Soolantra. I really like to try ivermectin though. Might see if I can get some oral ivermectin and see if that improves skin inflammation... That seems the best option left if your skin just cannot take topicals with alcohols or other stronger solvents. 





Music clip of the day
   






July 29th 2018

It has been outrageously hot and even the most ardent sun lover has been complaining with the 38 degrees heat. I have mainly slept and worked next to the portable airconditioning unit. My mother wanted to buy a ventilator, but all the shops in Holland were out of stock! She was placed on a waiting list, no joke. There were some pretty effects of this heat too; the sea was glowing blue in parts, as millions of plankton lit up like fireflies. Apparently, when plankton gets disturbed, they start to emit light though a complex chemical reaction. I managed to go out for a meal with my sister and dad regardless of the tropical temperatures, later in the evening and on a spot on the terrace that had plenty of wind passing through. But it was hard, as my face burned and felt really uncomfortable. It also turned red at the end of the meal, but I was chuffed I managed to sit through two-thirds of it all with a semi-pale face. But today I had taken the bike to the shops and right in the city center my rear tire burst. I couldn't find a bike repair shop that was open on Saturdays and had to walk with the bike in hand and groceries stacked on my back to my house again, in the 30 degrees and high humidity. It was the first time in a long while that people actually gave me extra long stares, as I had turned so red.. Awful burning feeling and cheeks swelling as a result, and I couldn't wait to take a cold shower at home and install my fans and airconditioning. One bonus of this weather; I can sweat more than I used to. Not on my face unfortunately, apart from a little dampness of the forehead and under my eyes, but my back and tummy were really wet. Might seem too much information, but for a long time I couldn't sweat at all! And that seems to be related with more flushing, as the body needs to find its way to release body heat. If sweating is inhibited somehow, the body will signal the blood vessels in the skin to dilate and release excess body heat in that manner. I wrote a blog post about this phenomenon here.

My skin is still breaking out now and then, and has many little needle-prick like red 'dots' over the cheeks, that come and go. I also am getting strange red rashes, mainly around my mouth, which seem to be a heat rash (or heat related). They tend to stay just for a day and then disappear again. I will attach a photo below. I do go out the door for work related things and to meet up with friends and family, but only when my skin is having a calm period and when the weather allows for it. This week I cancelled afternoon drinks and for tomorrow a visit to the camping where friends of mine and their kids are staying. It's just too warm still and the camping is far away enough to not enable me to return home quickly if a flare breaks out. It's depressing if you think too long about it, but luckily I'm not alone and people close to me also visit me and understand my use of airco and fans. And I am not an extremely social or extrovert type either, and have plenty of things to do in my own world and bubble. But when I was in my early 20's it was very disheartening and utterly depressing to have these painful burning red flares with your face feeling on fire come up, and so many times a day, and feel this anxiety and desire to stay put and control my skin as much as possible. I still do this now, but have grown used to the waves and the motions of it all.




Life does in some respects seem similar to Taoist thought, the Ying and Yang..Chaos and Order…Good and Bad. If one becomes too strong the opposite will show up to help create a balance, like some polarity spectrum. Civilizations, 'culture', laws, norms are a product, a reflection of the desires, allowances, ‘tolerance’, of the masses.  Provided sufficient comforts, humans tend towards the same outcome: sloth, recklessness, corruption, and auto-destruction. Maybe our current society is becoming too hedonistic in some ways. Maybe a human is intrinsically a flawed bio mechanical machine in the end.

Another societal problem nowadays seems to be the ongoing wave of suicides.. So many young people and middle aged people who take their own lives, both celebrities, semi-celebrities and every day people.. My friend and his ex this past year included.. It saddens me and interests me at the same time; what is going on here? Suicides used to be more stigmatized perhaps. It is very worrying.. I wonder if modern living is putting too much pressure on people? We have so many options in life now (over here in Europe at least), so many choices. Such high expectations. Is social media making it too easy to compare our lives with the hyped and pimped social media reflections of other peoples lives? Does it provide a warped idea of other peoples 'successes' and ever cheery moods, ever beautiful (sometimes doctored with) looks? I don't remember feeling such pressure myself, growing up and spending my entire teenage years over the time span of the 1990's, to always look fantastic and always be 'happy' and have fun and otherwise feeling a loser. Things were more laid back for sure, without the constant pings and demands of mobile phones and social media. (I still don't have a smartphone, I love just being cut off from the net when I am traveling or walking or being out there. I want to see the world, look around me, have thoughts roll freely, not be constantly distracted by the net). Or are youngsters not hardened enough by disadvantage nowadays, and therefore not as able as previous generations to handle the real testings of life? Or maybe there is even something invisible floating in the air now, a zeitgeist thing, and some people are copy cats with all these suicides? Maybe depression is more severe and wide spread these days than before? I don't know the answer, it might be a bit of everything above combined perhaps. Either way, very worrying. Mental health and suicide are becoming huge issues and too common among young people in our society. It needs to be discussed urgently. It's the family and friends who are left behind that never truly recover, and then it leads to mental heath problems amongst them too, sometimes..

I remember walking in Leeuwarden, a Frysian town at the end of 1999 and being approached by a camera team. And being asked that with an eye on the approaching year 2000, what I thought was THE biggest, time changing invention of the 20th century. I said communication technology. Not sure I was right! I could have opted for the discovery of penicillin but I didn't feel that truly changed the course of time, just the amount of people that were allowed to live out their lives instead of perishing from bacterial infections. Communication technology would include the telephone, radio, TV and the internet. It has changed life so dramatically, looking back there seems to be a clear change switch at the start of the 1900's with the arrival of the media (other than books and papers) and communication means. Internet and the arrival of social media is another huge marking point for the modern days we now live in. It has good aspects to it, but humans being humans, it is used for a lot of bad stuff. And people are so easy to get addicted to anything. I often read articles in newspapers now about how to 'detox' from your social media and smartphone addiction. Well we've been over this before but many adults are knowingly and willingly enslaved to their phone. Out in restaurants, in pubs, on public transport, the (real) world is passing those people by. Often magic is to be found by just observing the world around you. Being present, having attention for whatever thing you do. Distraction kills creativity. Going back to those 90's; from what I read in the media over time, the 1990's are now frowned upon; bad (cross over style) music, bad dress styles and the decade that prepared for the hell of 9/11 and militant Islamism in the West, fading identities and over consumption. But I experienced it more as a free, affluent (in Holland) period with lots of experimenting, also on a cultural scale. Many new movies, cool and raw like Trainspotting and Pulp Fiction, interests in other cultures within society. Optimism about the future, plenty of jobs, wealth (the ever growing bubble that would burst in 2007/ 2008), possibilities, money for good social state investments, the fall of communism and the end of the Cold War, a strong sense of ongoing peace. Western Europe was a beacon of freedom, tolerance and openness, for immigrants, different cultures, sexualities, others. MTV brought us American culture, I remember watching The Real World and wanting to go to New York myself. The world became smaller thanks to TV programs like that and the ease of flying and reduced costs of traveling. At the time, everyone around me who was young was looking forward to the future, and it is usually while looking back that people recognize happiness was actually in those moments.

There was social contentment back then, not the angry voices and polarization we have also here in western Europe today. The worst disagreements I can recall came from some squatters in town who were driven out of their squatted hospital building by police. Politics wasn't yet a constant crisis management thing, like it is today. Here it was all about unions and coalitions and peaceful opportunities, not polarization. Hopeful modernization and energy galore, a lot was possible due to the affluence of Holland (and many other European countries). The Roaring Nineties. A carefree and naive time. Unfortunately it eventually led to heavy privatizations here, to the purposely crumbling of the welfare state. Also the whole building of the European Union of course. The 90's were not just a Teletubbie-happy time, but also the prelude to the dark 21st century (with terrorism, wars, fear, climate crisis, emotional numbness thanks to computer and phone technology and economic crisis). In the 90's the foundation was also (re-)laid for the sale of the world, unbridled consumerism, corporate rule, the 'greed is good' law reinstalled, and mega corruption. The rules of world economics were rewritten for the interests of a small group of powerful companies, hollowing out democracy. In the 90's, marketing and PR started to seep through in all facets of life. The market became its own gospel, without alternative. Now we are probably paying some price for one of the greediest decades in history. But overall, the 90's were probably most of all a bubble of optimism and delusions. I feel in retrospect that the 90's were also gleefully naive perhaps. Universal illusions of grandiosity, ongoing peace, painless multiculturalism, ongoing profits. Poverty and inequality would be banished from the world. The same ideas Stefan Zweig described in his amazing book the World of Yesterday, about the same naive optimism of living in the best of times in Europe (Vienna in his case) of the late 1800's. His parents thought things would never go downhill again, that modernization would make sure their own calm, safe and affluent living would continue ever after, and that nobody would be as foolish in the future anymore to start a silly war.... But their time of relative peace and boredom was followed by the most horrendous world wars and upheaval we have ever seen. Zweig underlined that societies and history go through such wave-like patterns of peace and prosperity, followed always by violence and imbalance. Europe seems to float on these waves, like a template. In Europe, societies have always shown a dialectic between craving public order on the one hand, and individual freedom on the other. Europeans don't like the weakening of traditions and securities, habits and cultural living rules, things that connect them to their past, but they also want freedoms and ways that lead them to the future. Europeans also always have this lingering desire for revolution. Institutions should never become too powerful and oppressive for a typical European, because then it can limit personal freedoms and block growth. Often revolts meant the ending of such institutions in the past centuries, but globalization currently seems too big a block, too powerful, to stop.. Maybe that partly explains the cultural pessimism around us.

Brains are now getting fed not just by (social) media and limited character messaging. Its all of it. That includes the media culture, diet, movies, music, styles, video games, apps, tv, advertisement etc. Not any kind of a new phenomenon; it's how society has always worked. But it seems (?) to be in hyper-drive now, because of the increased rapidity of information exchange, and the focus on connecting to and relating such information. I mean, food, even that has changed over the decades. I saw the movie That Sugar Film recently. Which brings to mind this report I saw on TV, where this canned beverage killed a young girl. The drink is actually called "FCKD UP". It's a combination of 11.29% alcohol, and whatever shit is in those high caffeine energy drinks. It's comparable to the controversial "4Loki" in the U.S. I remember seeing something about, when "Dr. Pepper" was already something you didn't want to mess with too often. You know, it's got a kick! Now, you've got 17 year old's killing themselves over 120 character text messages, while casually snorting cocaine and alcohol. Dying from legally sold "hard soft drinks" (now being taken off the market by the manufacturer). And for the ones that aren't dead or dying, God only knows what's happening to their brains, fusing their bodies and minds with all of this technology, like it was manna from heaven. Because as per usual, society won't until its too late.

Oil will eventually run out, minerals will run out. Drinking water will become more scarce (as is already happening). So too will foods like chocolate, coffee, and animals like fish, from over-fishing. When future alien civilizations are analyzing our planet and species, I think they will find that it was this money system combined with the inherent selfishness & greed of man that led to our downfall and extinction. The destruction of our planet and species… I'm sure that some of you are thinking: "Super!. Couldn't have happened to a nicer species". Every time I see yet another one of these "hero" movies, where some shlub is tasked to "save the planet" and "save the human species", I'm thinking "save your f. breath!". They tortured other species of animals, ie. whipping them and stuffing them in tiny cages, and shooting them with hormones so their "breast meat" can grow so large they can no longer hold themselves up. They exploited and murdered other species of animals by the millions without a moment's thought; if not daily. Sometimes for their feeding, sometimes for money, sometimes for their own personal pleasure. Where is justice for the animal kingdom? Where is *their* "hero", to save them from humans? Anyway, I'm rambling




Music clip of the day




My summer skin outbreaks (I don't wear make-up on my skin and use a regular camera without filter options):






Skin during a flare (not even flushed, just base redness and inflammation, my face goes really puffy too from it!):












July 21st 2018

Its been really warm the past month, and my rosacea responds in strange ways to it. On the one hand, I am actually at my palest when everything is in place (ventilators, air conditioning) and when the temperatures outside are not too extreme. There are no big temperature changes then for when stepping in and out of stores or peoples houses. I also seem to get more red and dry faced from cold weather. I tan my body a bit (never too much) so the low vitamin D levels are slightly kranked up, which also seems to help me. I only get proper seb derm flares in winter, so that one is also mostly under control. But when the temperatures rise too much, basically over 23 degrees outside, I get flushed more when going out of the house. Unfortunately, temperatures háve been over 23 degrees for a while now. I do go out the door for food shopping, market visits, drinks now and then, walks, but always early in the day or in the early evening, when it is easier to avoid direct sunlight. It is quite depressing to live inside so much and feel such a vampire in a way, but it is what it is. I'm just working and living around my flushed face these days. And the upcoming week temperatures will rise to 35 degrees it's expected. Had a string of extremely hot summers now the past years. This has been quite a heat wave. I really don’t remember it being this hot in the summers before, when growing up or being a teen. In Holland we were lucky with a couple of weeks with 25 degrees perhaps, typically. Not months on end with soaring heat and drought. The island of Texel, usually lush green and bombarded with rain, looks like the Sahara this week (see picture). Things seem to be changing. How can anyone think global warming isn’t happening? It is ironic how the Right likes to say "truth trumps feelings", but when it comes to global warming they think it is a hoax. Conversely, the Left uses science to back up global warming, but won't allow people with factual but opposing views take the stance anymore in Ivy League universities, as facts can be very offending these days. UGH!

Another downside of the summer is that for some reason I get p&p's; papulas, small red skin outbreaks. I normally just have red cheeks and flushing and a burning painful face. My face even feels tight and uncomfortable and with a constant background burn feeling when I am relatively pale. But in summer I get these small pimples on my cheeks too now and then. My skin is too sensitive and reactive for any topical cream unfortunately. I only wash it with bottled water and cotton pads in the evening. But I can put zinc oxide on the spots. Not on the rest of my face, just spot treatment. Zinc oxide dries them out and hides them from sight, and also acts as an anti-inflammatory. I also have metronidazole cream, but my skin feels extra sore when I use it. But sometimes I have no real other choice and use that one for spot treatment too. I've been feeling good some days and down some other days. Summer has never been a favoured season anyway, somehow I remember already hating it in my teens. Those unstructured summer months without school to attend or clubs to go to, all these people heading to the beaches and water front, getting drunk and baking in the sun. I always disliked all of that. Never liked warm weather and neither the aimless hanging around for the sake of socializing. Unless it was with my more solid group of friends. I still don't like long lazy summer days with no clear structure. But now it is made a lot worse by this stupid rosacea, or whatever it is exactly that I'm having. I had some suggestions made that I could instead have a flushing issue related to erythromelalgia, and someone else made a great suggestion about my red rashes above the eyebrows: "you definitely have ulerythema ophryogenes on your eyebrows and therefore I do wonder if you have keratosis pilaris rubra faceii (kprf) / Keratosis Pilaris Atrophicans Faciei (kpaf) on your cheeks. Sounds like you have been down this route however as someone with these conditions who was incorrectly misdiagnosed with roscacea I know what it is like trying to get a correct diagnosis for 'redness' on the face."

I'm absolutely going to mention the keratosis pilaris rubra faceii (kprf) / keratosis pilaris atrophicans faciei rubra faciei (kpaf) option to my dermatologist. I have missing outer eyebrows, the red rashes there and also have the chicken pox skin on my legs. Always have had that! Not my arms though... And my facial skin has a clear problem with dead skin buildup clogging the pores, something I read is related to this disorder. My skin won't shed normally, it just builds up and up and I need to scrub it off or scratch it off in abnormal fashion, as the skin is too sensitive and reactive to handle topical creams or facial scrubs. I am really at a loss still, 20 years after developing this... Another interesting aspect I read about this KPRF/KPAF thing is that it hits younger people, teenagers. My troubles started at age 19, but reading back old diaries and recollecting scattered memories, I actually blushed and turned red from alcohol way before that. And I also remember to go early into the class room of regular school, before university, to shut the heaters down or open a window. Always someone would complaint about it, but I needed fresh air as it was always too warm. I used to wear a lot of make-up back then, very pale face foundation and face powder and red lipstick and all that jazz, so I wouldn't have seen if my face glowed up red back then. But many dermatologists over time told me that rosacea typically hits after 30, not in the late teens. I think that is old news really, there are plenty of young(er) people on rosacea forums and groups who developed rosacea much earlier in life, but I do wonder now if I may not have classical rosacea. Or not to have started with, and then it did develop into rosacea most likely these days, as I don't just have flushing and burning anymore but also get these small break outs more regularly in parts of the year. But nowadays I'm heading to middle age so now rosacea could get more active perhaps? It's so hard to find a definite diagnosis sometimes... I've seen so many specialists and most have opposing or slightly different takes on it all. My current wonderful German dermatologist thinks I have a histamine-related flushing problem, and not classical rosacea. In the end these illnesses are just labels and I've been reading up lately on the Erythromelalgia forum and there is a group of patients there with the same symptoms as me; faces that flush and burn and overheat at the drop of a hat. The same happens to some poeple with KPRF/KPAF, the same happens to people with mastocytosis and histamine related problems. I made a blog post some years ago about other health conditions that cause the face to flush and there are many out there.


My summer skin outbreaks 




Music clip of the day



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