28 May, 2018

Ongoing post, Update day to day life VI, October 30th 2017 - now


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






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? No I don't usually. But it depends on factors like my hormonal state of the month and whether or not I ate pro-inflammatory foods the days prior. But normally I try to stick to my healthy diet and am not red when I wake up. My skin is cool and pale. I have a special construction made, 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.

She says 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. And this 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. It's 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.

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 (and both looking like a horse; why do posh ppl often resemble horses I wonder?). 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.

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."

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..

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. 








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 Jody, 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 destressed 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, upbeat, 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. 



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:









August 20th 2018

Ugh I'm covered in red rashes, all over chest, belly and thighs. Not covered as in one nonintermittent 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




Before scrub:




After scrub:




The day after scrub:




Day or two, three after scrub:





Week after scrub:



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










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 my cat Koshka detsroying a paper bag in less than 3 minutes haha. (The green 'plastic' looking bag is a fully biodegradable organic one, and he didn't bite or swallow it).

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.






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. 











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.




Good skin periods seem to have a strange downside nowadays though; when my skin is pale and not too painful, and when I'm not in survival mode and fully preoccupied with cooling my skin, then I start to feel sad some times about not having kids. I didn't want to for a long time, as I've had such hellish years of unbearable pain, burning up from the inside and having cold pack and fans attacked to me 24 hours a day. I don't want to go back to that misery. But for a while, in my late 20s and early 30s, I felt confident enough to give it a try anyway and it turned out I have such an aggressive immune system that every single (difficult to achieve) early pregnancy resulted in MC. Been in and out of hospitals for a year or two at the time, even had an IVF treatment, and all they could offer in the end was prednisone corticosteroids, which all of the dermatologists I see were adamant about that I should not take them, rosacea wise. See for more on that this blog post. My rosacea started after using a steroid cream on my face for a couple of days only. I even flare from a whiff of steroid inhalers. I did not want to go that route (and still having no guarantees after months of prednisone that it would all end well pregnancy wise).

I have tried to accept this over the years. My life is rich and full in many other ways and I don't think I miss the whole organization around motherhood. The school runs as they call it I think, the play dates, the taxiing around, the stress, the dullness, the mummy clubs. I especially do not miss the mummy cult clans and their overbearing ways :) But I do some days (usually on Sundays for some reason) miss the joy and fun and curiosity younger kids bring to your life. It's a bit of a shame that my friends always used to say, still say, that from everyone they know, I am the most natural with children, and make the most effortless connections with them. Cats and kids warm to me quickly it seems. I'm the awkward person that prefers to play games with kids on a garden party, instead of talking with the other adults. So it feels like a shame sometimes, and it is hard for me that I am young enough to still change my mind. But I am such a prisoner to my burning flushed face.. I literally need to cool it with fans and temperature control all day long. I also worried at the time about the risk of passing this shit on to another person, a child in this case, with a partner with similar red hot cheeks. But rationalizing things does not mean the feelings neatly follow that path. I'm just so happy to nowadays be able to fly, train, travel, meet up with people, go to the supermarket without people still staring at my red face all the time.. Its such a delicate balance and I just have a little bit control back over this terrible flushing and burning.. Only now my hands are playing up; they often go red, especially my fingers, and burn and feel very hot.. I have been diagnosed with Raynaud's Syndrome in the past, but I never had this before. Normally in cold weather my hands go very pale and then start flushing. Now they don't go pale at all, they just flush and burn (especially my right hand); they radiate heat and I need to hold them up in front of the fan for hours or wrap in cold packs. Maybe its the heat but I'll ask my derm about erythromelalgia next time... That one comes with the painful flushing of hands, feet and the face too sometimes... My feet are still fine though.

I feel that people all want to create their own safe cocoon in life. When you are young you have your direct family to feel safe and secure in and 'belong' to. As a young adult that family becomes something to rebel against and you create your own clique of like minded friends. A direct lifeline and acting like a new safe cocoon. And then around my age, everyone wants to marry and create their own family. Friends who before made every effort to keep the friendship intact, alive and well-fed, suddenly refocus their time and attention to their own family. No matter how welcome I am in their lives always, I am an outsider in that sense suddenly. But I can really imagine the snug feeling that young parents must feel at times. Sometimes I miss that too, even though I am far from alone. You hope and think that kids are for the rest of your life. I need to go through life creating my own value and meaning. That can feel like a challenge on some days. I worked with groups of disabled adults and children over the years, which was a blast and so rewarding, perhaps I will adopt or foster in the future.

I mentioned this whole kid thing once in a facebook rosacea group, when someone asked about thoughts on having kids. Many chimed in, with the general message that rosacea should not rob your life of motherhood. "Fuck Rosacea" and stuff along those lines. I'm not sure how many of those people have horrendous burning faces and can't leave the fan and airco, I suspect there were more with skin outbreaks than with neurogenic rosacea responding, so I also wrote about my own doubts regarding having kids. Of course that was offensive to some lol. I remember someone tried to vilify me, a certain man who runs one of these rosacea facebook groups, and he was saying about me that I was disgusting for insinuating that 'people with rosacea shouldn't have kids'. Which was ludicrous, given I was careful to make it clear this was just my personal situation.

I am developing a general dislike, no hatred is a better word, for political correctness lately. It is absolutely rife in health groups and I'm so sick and tired of people who put their 'feelings' before facts. Who are trying to silence or influence everyone around them according to their hyper sensitive sense of self-entitlement. You have to weigh every single word these days, and even then people are offended at the drop of a hat. It's an interesting phenomenon too; growing up this was absolutely not the case. It seems to have started with the rise of social media and the internet, where people cleave and cling together with like minded people in their self created echo chambers. The madness of it all is that this minority with often a victim mentality then starts to tell others around them to act according to their beliefs too. And nowadays we end up with one of the ABBA band members saying they would probably not have written the song "Does Your Mother Know" these days, as it could 'trigger' someone. (I mean c'mon, apart from the very correct lyrics, that song was written in a different time, a time when people didn't take offense at every word written or spoken). We all know the difference between right and wrong but there will always be those that break the rules. You won't stop them by whining and wanting to change every aspect of our lives. It results in people publicly apologizing for the smallest grievances, oh so worried not to offend anyone. You can't say anything critical anymore or you are accused of being a racist, a misogynist, a sexist, a fat-shamer, a thin-shamer, an enabler, white privilege and the list goes on. Audience: WOOOOOO!! These days Identity politics and manufactured outrage seems a political strategy. Makes you wonder what real, much more pressing issues are being pushed under the carpet. Bill Maher made a good rant about this I think:



I dislike it when political correctness and political correct ideologies are pushed onto the rest of society at the risk of being publicly scandalized and trotted on. It gives me eerie feelings just like when watching The Handmaid's Tale. Protecting vulnerable people and groups from abuse is wonderful, I'm all for that. It was also about time that something was done to correct unacceptable behaviour, like the abuse of others by those in power. I'm all for equal rights for everyone, and freedom of openly living your life in whatever shape or form. The problem to me is that it seems to go in overdrive sometimes. Students of Ivy League Universities being 'triggered' by being confronted with a non PC opinion is madness and not what liberalism should stand for. It shouldn't turn into Orwellian thought control. I mean, this will offend half the people reading this of course, but Safe Rooms for Ivy League students? Refusal to invite any speaker at such top notch uni's who present a non PC opinion? Cultural appropriation is another one. People literally kicking a Jewish kid from the stairs because he dares to wear dreadlocks. Kids dragged from Halloween parties because they wanted to dress up like an Indian or a geisha. Outrage! It only works one way of course, minorities trump majorities after all. Apparently white men are the source of all evil currently, according to MTV, previously known to be a music channel. We live in a world where sentiments trump facts. People are shut up to tell the truth because the world out there prefers to not hurt some peoples feelings. I am not trying to be mean, but there must be an explanation for the transparent and plain dumb media brainwashing channels like MTV and others are attempting? It's not even on par with high intelligence brainwashing organizations from the past, think of the Stasi or KGB, who would sneak things in and not make it so abundantly clear what their aims are.

A friend of mine said that he wonders sometimes if what we see today is more than just the result of everyone feeling very important and being very vocal due to their social media gathering. He hypothesized that because we are getting weaker as a society, we see the “barbarians” show up (currently in the eyes of some types the Muslims). 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. Heartbreaking for everyone.

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 its 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 the heck is the revenge for this?? Where is justice for the animal kingdom? Or mother nature, that humans also showed no respect for? Where is *their* "hero", to save them from humans? Nah, that won't bring cash to the movie producers of course. Their hero might turn out to be the short-sighted stupidity of the human race itself. Where they hate and try to kill each other, rather than love and save each other. (All that "hippy" shit that all those fool-headed "hippies" were so wrong about, because they underestimated just how hopeless human nature is). I hope that is what does this race in, because I believe in justice. When you cause real harm to someone or something that did nothing to you, whether consciously or out of gross negligence… you should hurt for that. Ok I think I should wrap this writing up now as it's getting out of hand :)

So.., maybe part of the problems of today is also that we are raising a generation of pretty self centered people, of which a large portion seems very eager to become wealthy and famous. The quick way, through youtube and instagram channels. The book "The Trophy Kids Grow Up" actually researched this and found that the top goal of 18 to 26 year old Millennials today is to become rich and famous.. After that, the biggest statistical group wants to become a famous singer or musician. Overzealous parents more often than in the past, tell kids they can become anything they want and that they are all very super special. This creates high expectations. The 'participation price' generation, who throw a tantrum when they don't get validation for every single little thing they do or say. Vast masses seem hung up now on very high expectations of riches, status and success. They are very special. But society for thousands of years used to be segregated in columns and people used to be born in a certain class and pretty much stayed in that class. Roughly (disproportionately) divided between the old money aristocracy, nouveau riche, the bourgeois and the working class. Local gold rush opportunities aside, when everyone had a shot. Those who were born in one social group wouldn't usually suffer under the life long ambition to become a member of a higher social caste. Within their confines, people all wanted to make money and as much of it as possible, and some people of course managed to climb out of their caste, but a kid born in a long standing family of bakers, butchers, cafe holders, fishermen and the list goes on, they were often secure in the knowledge they would end up doing the exact same thing. Now we have become the shining star in our self created social media universe and entire generations aim to become rich, powerful and famous. That is bound to give pressure and stress and stride for them. Because the game is often rigged and not everyone is going to succeed at this, all the while seeing in their live feed the updates from those who did succeed.

Ok last bit of marvel from our modern times: Who knew gaming could be a career move :) In the US there are now universities who give scholarships to quality gamers. I actually though that this video was hilarious.

And this is the ultimate feel good video for me personally :) (I uploaded the direct video in all these cases - just press the white play triangle - because on youtube videos so often come and go or are removed or set to private, and then I end up with a blog full of not working links to youtube videos...








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, airconditioning) 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 









July 12th 2018

Update on the World Cup


Over here people are all still watching the football World Cup. Or soccer, the sport that seems gigantic in scale and popularity almost everywhere outside of the USA. It is so huge that the media held one minute silence for the Argentinian team when they lost a group pool match.. Like they do with national disasters like earthquakes and after mass murders.
Argentina used to be a fierce football nation, but they were failing this tournament. In fact, many great football nations have been sent home prematurely, which has helped make this World Cup one of the most spectacular and surprising to my (limited due to age haha) memory. Spain, the king of the tiki taki pall possession play, reached often 70% ball possession in its games, but was sent home regardless. The same for GermanyPortugal and Brazil. Teams from smaller countries instead did well, Belgium for instance and Croatia. Japan also played surprising good football and Russia caused surprises too. Maybe that is why me and some friends (and my fanatical parents!) who watched it along still got wowed and excited about some football matches; they are not a mathematical equation, where purchase price equals quality factor and results in guaranteed win. You can have a team with the best players of the Spanish competition, worth hundreds of millions and who have over 70% ball possession, and in this tournament they could still be sent home by a relative B team with the right team spirit and discipline. Brazil, they have a couple of hundred million inhabitants, everyone with even the least bit

of sport prowess wants to be a football player first and foremost (unlike Australia for instance, where the kids with the most sporting qualities train to become AFL players or do rugby league, and Australian football is left with the 'leftovers').

That is also why die Mannschaft (Germany) is always dangerous; they can morph any group of players into a machine. Just not this World Cup :) But they have that gift normally. All noses in the same direction, no room for ego's. Mbappé:




Brazil - Belgium

Brazil - Belgium, a quarter final that had the feeling of a final, was dynamic! 90 minutes of pure ecstasy and a great football fight! This probably will turn out to be one of the top matches of this tournament. Brazil were not always lucky, so many rebounds from shots on goals just fell wrong for the Brazilians. They might have deserved one penalty too (Kompany kicked one Brazilian on the ankles instead of the ball at some point). But Brazils star striker Neymar had done so much tumbling and fake diving that the referee gave Brazil the disadvantage of the doubt. being Dutch I was happy for Belgium, and they were the underdog too, so extra happy they won. Brazil have become an unsympathetic team to watch unfortunately. Even Cantona had enough of Neymars antics :)  

I loved hearing Belgiums manager Martinez analyzing his tactics after the match on Belgium tv. He really surprised the Brazilians by shifting striker Lukaku from left to right position, leaving De Bruyne as a floating flexible central striker. There were constantly 2 Belgian strikers drifting forward, making the field wide. Hazard was so strong on the ball, keeping it in possession. Lukaku was an absolute beast. Hazard proved he's World Class. De Bruyne with the killer goal. Cortouis the goal keeper with match winning saves. Mournier in the defense kept Neymar in his pocket (but he is not playing against France.. 2 yellow cards). Belgium's golden generation played their best match and also for the neutral viewer it was a battleground to watch. And Neymar's theatrics finally backfired. The referee was having none of Neymar's nonsense. Neymar needs the air ambulance if he snaps a bootlace.

Here Neymar is rolling in real time after a minor bit of contact:


And here he is mocked for it:

It is interesting that with the introduction of VAR, a Video Assistant Referee who watches along with the match and flags errors made regarding goals, penalties and free kicks, all the Latin American and Latin teams have gone out early? Maybe they need to find a new way to win now that cheating and conning the ref doesn't work anymore.




I also saw some impressive schwalbes already this tournament, a lot of fake tumbles to try to get a penalty, but none were as bad yet as these :



As my friend linked me to, the footballers of today, with their endless tumbles, fake crying for cards and free kicks and their shampoo advertisements, are no longer the strong football heroes of the past. No traditional Byronic heroes; Lord Byron wrote this on the subject, back in the 19th century:

The sails were filled and fair the light winds blew
As glad to waft him from his native home;
And fast the white rocks faded from his view,
And soon were lost in circumambient foam;
And then, it may be, of his wish to roam
Repented he, but in his bosom slept
The silent thoughts, nor from his lips did come
One word of wail, while others sate and wept,
And to the reckless gales unmanly moaning kept.




France - Belgium was also a cracker match, the semi-final. Both teams played a comparable type of game, with control on the midfield and fast counter attacking through precise combinations when they saw a chance. Both teams have quality center-backs in Hazard and Pogba, and both have quality strikers. France has the world class Kylian Mbappé whereas Belgium has Romelu Lukaku. De Bruyne for Belgium and Griezmann for France are equal star strikers. The difference to me was laying in the defense; France has a strong defense whereas Belgium had less of strong defense. I was supporting the French all the way through and even had some money on them winning the cup, but Belgium played very attractive and good looking football and were the darlings of the world this summer. After beating Brazil, they expressed in TV interviews "Well now that we beat Brazil, France shouldn't be that much of a problem". That sounded naive to me, as not Brazil but France were the team to beat this tournament. And they indeed lost this battle of the Titan.

Belgium so far had everything going for them and sometimes, to win a tournament like this one, you need luck on your hands too. Brazil technically speaking had the chance to make 4 or 5 goals easily against the Belgians, but somehow the balls fell wrong all the time. In this tournament the better teams did not always win. Japan was very good in their last match against Belgium, but were unlucky in the last minutes of extra time. South Korea were not better than Germany, but they won.

Against France, the exact thing I had feared for happened: Frances strong defense held the Belgian midfield in lock down and prevented the Belgian strikers from attacking. Belgium just didn't create the same chances as they did in previous matches. Being pressurized like this, they also made more errors. Some bad passes, imprecise attacks, and they didn't score. At some point all they did was counter kick the ball to the 16 meter area and hope someone made a header. Lukaku missed almost every pass from Hazard (or lets say the few Hazard was willing to give off, instead of wasting himself) and seemed to be surprised by chances. He had virtually no service this match, surprisingly. Belgium seemed to have ran out of invention and ideas. France was not allowing them to play their own type of game. Brazil, the team the Belgians had previously sent home, had more chances against Belgium than Belgium had against France. But chances don't count, only goals do.

I thought it was a good match and that France did pretty well, keeping Belgium in a tight grip most of the 2nd half. France also had many great fast combinations and attacks. Pogba made a world class pass in the first half, sending Mbappé away. I could not find a gif image showing this exact pass, but here is a collection of his type of passes, always from a long distance and sending the striker away to the goal very precisely. An amazing talent.

Frances quality this tournament has been to take very efficient advantage from most chances they got. The old style 'tiki taki' football meant that teams needed to have an overwhelming ball possession and kept kicking the ball around within their team, trying to find a little opening to score. This made for tactical but tedious football at times. France did not demand the ball possession, they were happy to lean back and use the space this created in the opponents goal area, bursting out now and then and being very effective at scoring. Some people called this calculating 'anti football', but I disagree. Counter football, like Belgium played it too, can be very exciting to watch and create very fast switches in the match. When France tried to waste time near the end, the Belgians got frustrated and started kicking and gathering at least three yellow cards. After the match, in Holland the jokes started flooding in as usual, there is a bit of mocking (loving) rivalry between the Netherlands and Belgium always. One was; 'I heard that Belgium have demanded a replay, because they say their players did not realize what was at stake'. Hehe.




England - Sweden

England was all worked up this world cup, after ending up in a relatively easy pool of teams, and allowing Belgium to win their last pool match, after which they had to face a pool with impressing opponents like Spain, Argentina, Brazil and France, whereas England could chill among Colombia, Sweden, Swiss and eventually Croatia. So after early success against 'pub team' Panama, the English got confident that the Cup was finally coming home again :) Love that enthusiasm.

Former striker and football commentator Roy Keane was seen openly bickering with Ian Wright on English TV, with Keane saying that he found it strange that fans and commentators were already openly planning the final at some point, before the semi final was even played, as if Croatia (their semi final opponent) was just a little twig on the road. A walkover. Ian Wright said to Roy Keane that he was an old sour fart more or less, and that fans should celebrate. Then he mocked his Irish accent. But it was curious to hear and the Croatian team (Modric) have said they were fired up when learning about England's dismissal of them as opponents (mostly in the press I assume). Keane seemed to be saying that England were more focused on the final and much of the build up coverage had dismissed Croatia, when in fact, they were the biggest team England had played so far in the tournament because all of the big hitters - Germany, Argentina, Brazil, Spain and Portugal - were knocked out early on or in another ' leg'.

Another 'sour puss', former Oasis member Noel Gallagher, also told his fans during a gig that they could spare themselves the hopes as football 'wasn't fucking coming home'. Was not appreciated, what a party pooper, his brother Liam also jumped on the opportunity right away to dis his brother some more. These two must be the most dysfunctional set of brothers since Cain and Abel.. Noel also said he'd support Scotland over England so he is probably prejudiced anyway :) I saw a documentary
on Oasis a few weeks ago, footage from their first years until the high fame, but they were constantly fighting back then too. One has the looks but is a complete knobhead, the other has the music writing genius but radiates misery. I like Noel though, always makes for straight forward interviews and he writes good songs often. Liam sings decent songs still but far from great. As someone joked; Without Oasis, Liams only real chance of survival seems burglary, hehe. Jokes, jokes.

So anyway, England beat Sweden and the country went crazy. And prepared for the final. Only the semi final was still standing in the way. A formality, really..


Croatia - England

High anticipation! I read a fierce discussion on the Daily Mail, about the (probably staged) dilemma of a wedding on this semi final Saturday afternoon: would you go or not? And when the bride orders guests to not check their phones all the time for the footy scores, will you go or not? Readers were all divided, with the bridezillas mentioning how someone who ruins their special day is not a real friend, and the football fans branding the people who choose to marry on a day when the World Cup is rounding up are selfish themselves and should just put a TV screen up, chanting 'Marriage is usually temporary, football is for ever'. Or repeating great quote from Bill Shankly: 'Some people think football is a matter of life and death. I assure you, it's much more serious than that.'

First half, England were lord and master. They outplayed the Croatians entirely with their tempo and energy and a dream goal early in the match. Again from a free kick. They like to score from 'dead game moments'. I understand manager Southgate trained them every single day on free kicks in Russia. Impeccable.


Croatia seemed completely out of it, like they had played their last 120 minutes quarter final not three days ago but the night before. I couldn't see England losing and they had a couple of good chances to score a second. But then the Croatians came out the 2nd half revitalized, and ready to provoke the English with little quarrels and pushings here and there. After every little skirmish the Croatians gained strength and the English lost some. They really worked themselves up, or maybe there was some special slavic herb in their tea, but it was another gang coming out the dug out. Croatians also never give up. They are dangerous in extra time, in this tournament they came back three times already from being behind in the last part of the match.

As my friend wrote: "Then something incredible happened. Old England came back! It was almost comedic in some parts. Croatia played dirty I thought, they were taking out the threats physically and still England could have won it in the first half with some of the chances they missed. Then they do this weird thing they do in almost every game. Get a goal ... then go to sleep. As if no fucks given ..."

England might have gotten scared in the legs from seeing the Croatians going in high gear. But the house came crumbling down suddenly for England; everything went wrong, they seemed to panic. And maybe they also didn't have the energy for 90 minutes full on football playing. So that was the end of the Football Coming Home campaign, sadly enough.. I had to smile though, apparently some fanatical England supporters, on the day of the match, went through the local phone books to find Croatian restaurants and bars and called them on the day of the match, singing into the phone "It's coming home" That's charming banter isn't it? (Or is it hooliganism?).

A nice team though, England. They might lack a couple of strong strikers at the front and a good midfielder who can give great passes though. But it's a young team, they can do better in the upcoming tournaments. And I know about the feeling of disappointment after losing, and after getting worked up first. The Netherlands have played three finals in a World Cup in the past, and it the only team who after so many finals never won the cup haha. I remember being on a Spanish beach in 2010, watching the World Cup final between Spain and Holland there, dressed in fluorescent orange.
Then when the Dutch started their kickboxing match, with every kick and punch the Spanish crowd got more and more worked up. Holland lost, again. And this tournament they were so bad that they never even qualified to start it.


So France won the finale eventually, against Croatia.

After first sending Belgium home in the semi final. I was happy. My English friend less so, jokingly accusing me of Franchivizing: "Le Nat! Natoinette in ze court uv le roi!". Strangely enough Frances prime striker has not scored a single goal all tournament. And their striker in the (won) world cup of 1998 did neither. They won the cup back then with a non scoring striker! Strange tradition. Same was happening now with Giroud. But it was a cuckoo's egg in the end. It should have been Holland in that finale, heck, in that tournament. I would have loved to see England playing the finale. Croatia having some 4 million inhabitants, it must be nice for their supporters as they never made a final before.

I had a little bet on the games. It could have been much more but I won around 100 euro for predicting early on in the competition that France would win it. Looking back on it all, despite the

high drama and fantastic surprise factor of many of this world cups matches, we've not seen football of the highest quality this tournament necessarily. France was good, but only spiked a couple of times each match, and lingered back for the remaining parts. In France, Deschamps the coach has received a lot of criticism too for his tactics and (according some) unattractive calculating play. Some critics thought that is not how the French team should play; they want to see attractive attacking football. But for Deschamps, only the result counts and after winning the cup as a player (I think he even was the captain of the team back then), he now is one of those rare people who also won it as a manager. I liked Frances playing style and only would have liked more bursts of genius perhaps.  France and Paris have had their fair share of misery the past years with all those terrorist attacks and murders so now it's time to celebrate.

In France, for a very short window of time now, football is also used as a unifying thing, as so many of their (black) French players grew up on council estates in the periphery. Youngsters from poor backgrounds in the banlieus feel they have something to dream of; becoming the new Mbappé. Same for the Belgians; for a little while the Walonians, the Flemish and the immigrants there felt united. 'Ninety minutes nationalism'.





I also read an amusing comparison of the Word Cup with Game of Thrones (yeh that old horse..). Someone on twitter suggested the following similarities;

-Germany would be Ned Stark; the Lord of Winterfell, Lord Paramount and Warden of the North, and Hand of the King to King Robert I Baratheon... who was killed off much earlier than many of us anticipated. Nobody thought he would die, but his head got chopped off in the first round.

-Belgium is Olenna Tyrell, who kills off key players before dying just before the final battle.

-Brazil is Joffrey Baratheon, who makes a lot of tantrum before being poisoned by Olenna Tyrell.

-Argentina is Oberyn Martell; not in the equation to star. Suddenly got into the play, danced a lot. Then got killed off brutally.

-Croatia was the ultimate underdog, Jon Snow. Fell behind in multiple situations, everyone thought they were dead only to rise from the Ashes.

-England would be Hodor (his analysis not mine!), repeating the same line over and over again and dies trying to defend a lead

-Russia would be Sansa Stark because everyone thought she was screwed from day one, but somehow wiggled through to a fairly formidable finish.

-Spain = Petyr 'Littlefinger' Baelish; does a lot of passing only to get caught by Sansa who was supposed to be under his control.

-And France the winners are the Night King. France was an ominous presence that no one really talked about at the beginning, but who gradually became quite scary. They hadn't lost ground in all of the tournament, broke down strong defenses and converted people from different places to create the team.

                                                             ****

It's a shame what money and commerce has done to football.. In the past, players used to stay a lot longer with their clubs. Now football is hollowed out as good players rarely stay long, the big clubs are constantly on the prowl for decent players, even scouting at local youth trainings. The Dutch football competition has weakened entirely because of the market effects; no club can keep hold of their star players. Many good players ruthlessly demand clauses in their contracts, allowing them to leave whenever they want for a bigger club.

There are, say, 8 big clubs in Europe who have dominated all the big club tournaments for many years now (always the same finalists in the champions league) and who have so much sponsor money and income from TV rights and such, that they can buy whomever they want. They have better football teams sitting on the bench as extra's than more clubs have on the field. The big clubs have so much money that they are like monster fishing boats at sea, spreading their net wide and buying up all the decent players, knowing that for every 10 of them 2 might be decent enough, and we'll see with the rest of them.

I think things should change radically, we need new rules:
-Half of a football clubs players need to be born and/or raised in the clubs own country (England, Holland etc).
-No more than 2 expensive players allowed in the team.
-Every year a club is allowed to purchase no more than 2 foreign players.
-If a certain number of good players on the bench are exceeded, some need to be sold again.

That's the only way for smaller clubs to make a chance again for the titles. But of course Fifa itself is a filthy corrupt mess. I mean, agreeing to hold a world cup in Dubai!! Average temp 40 degrees and not a soul watching the matches in the stadiums. Its all about money.





July 2nd 2018

I used to play football (soccer in the US) for about ten years as a girl and teenager, and still love watching football matches, either in the stadium of my home town team or on the tele with the current World Cup for instance. This tournament, held in Russia at the moment, is fantastic so far. Am so enjoying following this world cup. What a crazy tournament. Holland has not even qualified for it (after playing the final against Spain in 2010), which is quite embarrassing but then again, Italy didn't qualify either. I have some teams I like and root for and more importantly some teams I hope will lose, hehe. Rooting for France, England and Belgium. Hoped Germany would go out asap, then quickly followed by Spain, Brazil and Argentina. I don't like their arrogance as a team and the constant soyboy cryings for cards and free kicks or penalties. As a friend said; They are not the men of yesteryear who would finish a game with a broken neck. Think of Bert Trautmann here. I don't think they would have worn skirts like Beckham or done shampoo adverts. Terry Butcher, (what's in a name) also played a whole game with blood gushing down his shirt from a head wound. And Beckenbauer also kept playing when there were no more options to switch players, with a broken collarbone and his arm in a fucking swing! Those were the football players of the past century. Now players go down for things like this:

  

 

So anyway, not sure if you reading this follow it, but I practically don't miss a match if possible, and today watched Russia play Spain live. It was nerve wrecking (I support the Russians). They were like a tank, only defending and rarely countering, but what else could Russia do with no star players in the team? They broke the Spanish tiki taki play effectively and I was so rooting for them to reach the penalty series. Spain had 80% ball possession, but if you don't do anything with that ball and don't create chances, it turned out to be just another useless statistic, as has been proven before in this tournament. If the Russians managed to get to penalties with an ongoing equal score, they would certainly win; they are cool machines with penalties (and the underdog in this match, ánd playing a home game with 70% of the stadium filled with Russians), whereas the Spanish had the pressure on their shoulders as favourites to win. So for them, these penalties were like Russian roulette :)
Which it was. Russia kicked all penalties in, Spain missed two. Vamos Ramos.

But what were they doing though, the Spanish? No Iniesta in the team and lurking midfield, making endless combinations..  If the game had gone on for another hour, Spain would have completed 2000 passes, and still not have won the match. With old fashioned determination, the Russians didn't do a dying swan theater play, but just grafted and used their players the only way they could possibly use them without star strikers. They test the attacking teams to the max, a future world champion needs to be able to also win from defending teams like Russia. Gracias Iniesta. Thank you for your service to Spain. Regards, Russia. Spanish goalkeeper De Gea was symptomatic for his whole team (I'm the best goal keeper in the world). But this match it was Russian goalie Akinfeev who came over, and pushed him aside; "Here, hold my vodka." This is the best WC ever. The lesser teams have all given it 100%, none of them roll over for the bigger teams, South Korea, Senegal, Russia. It is fantastic. It's like Game of Thrones this World Cup. All the main characters are leaving swiftly. Crazy! Even the intro video made for the tournament seems inspired by Game of Thrones intro. This tournament is wide open.

 



Another couple of highlights of this tournament were seeing Germany not making it past the pool phase (what can I do about it.. I'm Dutch, we have a natural and historical rivalry with Germany), France playing magnificent the other day and sending Argentina home, and Russia kicking out Spain and seeing that monster Ramos cry. French play fresh, attractive and fast football and they have a 19 year old wunderkind called Kylian Mbappé, he is amazing. 



Last video that made me laugh: sneaky Panama trying to score in the pool match against England (they got beaten by 6-1) while England celebrates their latest goal:
 

Of course they need to wait for the English to get back in position and for the referee to whistle, but I found it funny in a sneaky manner. Also classic, because they still messed it up; they kicked the ball straight to the goal keeper.

Many teams and supporters celebrated the exits of some big teams, including Germany and Spain.

 

Even my parents were smirking. Either people dislike the superiority smugness of die Mannschaft, or people are happy that some of the biggest players are either kicked out early, or not even made it to the pool phase. I know many will have laughed when Holland didn't qualify and I completely understand that. It is part of the tragic that sport can be and that makes it so attractive and human. If
the same team would always win (think the Scottish competition), then what fun is there to it? Everyone I speak or hear about it says that same thing; one of the most unpredictable WC ever and one of the best therefore. Sometimes a country has a promising talented generation of players, sometimes there aren't any for some years.. Belgium have what they call a golden generation playing right now. Holland played the WC final in 2010 with a great generation of players, and we played the semi final in 2014. Ever since, the well dried up. We might need another 4 to 8 years to hopefully have enough quality players for a good team. Don't forget that Holland is the size of a small shire lol. Well, bit bigger perhaps, but it is a small country, Brazil has a 207 million inhabitants, so a lot more potential good players to chose from.

I also enjoyed the Denmark-Croatia match, although the highlights were mainly the first 5 minutes after take off and the last 5 minutes with penalties. But it was nerve wrecking again and so dramatic, with that tree trunk Schmeichel in the goal and the Croatian goalie was very good too. They both stopped as many or more penalties than they let go through, astounding. I did think they most of the time got off their line before the ball was hit though, but mostly with one foot. Read up a bit on that thing, because it was quite visible with some penalties last night. Think it is against the rules but it is allowed, considering all the tricks the footballers can use to deceive the goalie.

I mean, how many players stuttered their run up? You can officially stutter your run as long as you don't come to a complete stop, but players like Ramos and some others seemed to run in slow motion, almost nearly stopping in their tracks before shooting (as soon as they see the goal keeper dive one or the other way) and as a goalie you don't stand much of a chance then. It's 100% an advantage given to the shooter by allowing an unnatural run up. They are supposed to make an uninterrupted run to strike the ball. So in light of that, perhaps it is good that refs allow keepers to spring a bit forward, as long as one of their legs still touches the goal line? Seems the only way they can get the momentum to get to the corners, and those penalties with Schmeichel and Subasic encroaching were the most exciting. But sometimes they clearly already moved away from their line:


I read that referees among each other have the unspoken rule that they will let the keeper get away with moving forward/off his line, once the standing foot is planted. If the keeper leaves his line before that foot is on the ground he`ll normally ask for it to be retaken. But the penalty taker always has the advantage overall and the biggest chance of the two. And Ramos was also allowed to taunt the next shooter while passing the ball after his penalty.. It is something of all times I suppose, Dudek also did it in that infamous Liverpool Champions League shoot out series (At some point he seems half way out his goal :D)
 

Luis Suarez plays for Uruguay and is a good striker. He was scouted a good 12 years ago by my own football club and played there for a year or two. I remember seeing this match with my dad in the stadium, and our team was behind 1-3 with 15 minutes to go. Then Suarez started to come onto steam. But Suarez is a little biter too.
  
 


I remember people made memes of it at the time, Suarez depicted as Jaws haha. He has been getting away with his fake dives and Latin style football antics for years and years, but now has to realize that with 40 cameras aimed at him from every possible angle and with extra video refs, he is making a complete clown of himself lately with his fake tumbles and dives.
 


Speaking of which, Brazilians Neymar also likes to exaggerate his tumbles, this one from the current World Cup is an Olympic level tumble:




More matches today, Brazil-Mexico and Belgium-Japan. Looking forward to them all.








Einsteins answer to the woman who wrote him with the question what the point of life is:



May 31st 2018

Today I am disappointed with the whole world, minus 2 people.. So I took some extra antihistamine tablets and indulged in the kitchen; home made tiramisu with self made fruit jelly and self made 3 types of chocolate with almonds and cranberries. F*ck the world and everyone in it today and rosacea you are a tosser too.




The notable English essayist, wit and clergyman, Sydney Smith (1771-1845) wrote in 1820, on learning that his good friend, Lady Georgiana Morpeth, was suffering from a bout of depression, advice for tackling it. His letter lists 20 wise, practical 'prescriptions' — all of which are relevant today. He explains: 'Nobody has suffered more from low spirits than I have — so I feel for you.' 

Foston, Feb. 16th, 1820

Dear Lady Georgiana,

Nobody has suffered more from low spirits than I have done—so I feel for you.

1st. Live as well as you dare.
2nd. Go into the shower-bath with a small quantity of water at a temperature low enough to give you a slight sensation of cold, 75° or 80°.
3rd. Amusing books.
4th. Short views of human life—not further than dinner or tea.
5th. Be as busy as you can.
6th. See as much as you can of those friends who respect and like you.
7th. And of those acquaintances who amuse you.
8th. Make no secret of low spirits to your friends, but talk of them freely—they are always worse for dignified concealment.
9th. Attend to the effects tea and coffee produce upon you.
10th. Compare your lot with that of other people.
11th. Don't expect too much from human life—a sorry business at the best.
12th. Avoid poetry, dramatic representations (except comedy), music, serious novels, melancholy sentimental people, and every thing likely to excite feeling or emotion not ending in active benevolence.
13th. Do good, and endeavour to please everybody of every degree.
14th. Be as much as you can in the open air without fatigue.
15th. Make the room where you commonly sit, gay and pleasant.
16th. Struggle by little and little against idleness.
17th. Don't be too severe upon yourself, or underrate yourself, but do yourself justice.
18th. Keep good blazing fires.
19th. Be firm and constant in the exercise of rational religion.
20th. Believe me, dear Georgiana, your devoted servant, Sydney Smith



How sensible to suggest Georgiana spends time with 'friends who respect and like you', reads 'amusing books' and avoids things (dreary plays, for example) likely to bring the spirits down. In other words, folks — ditch toxic people, depressing TV and keep off Twitter! When he advises 'short views of human life — no further than dinner or tea', he's tapping into that universal wisdom (from Buddhism to Mindfulness) which advocates living in the present. I like this: 'Don't expect too much of human life, a sorry business at the best' — because it's healthy to accept the shortcomings and disappointments we may experience, and be realistic about what we can hope for. At the same time, he advocates fresh air, 'good blazing fires' (NOT advisable for rosacea patients!), making your sitting room 'gay and pleasant', avoiding laziness, keeping busy. Here are my favourites: 'Make no secret of low spirits to your friends, but talk of them freely — they are the worst for dignified concealment.' (Don't bottle it all up!) Then, for essential self-worth: 'Don't be too severe upon yourself, or underrate yourself, but do yourself justice.' He suggests comparing 'your lot with other people' —not to envy but because you may think yourself lucky in comparison (I keep creepy files with photos of some young people who died and whoms cases were mentioned in the media.... for when I am particularly somber and sorry for myself: see you stupid, you could be worse off, you are still existing at the moment, see that as an opportunity, you can be dead for eternity to come). And his first: 'Live as well as you dare.' I'll clink glasses with that, wise Rev. 








May 29th 2018

The ex girlfriend of my Romanian friend who took his life last year, has followed his path. I look through her photos, many beautiful ones, and in every 'previous post' I click on, she becomes younger and moves further away from that fateful day. Her texts were amazing and poetic. She befriended me after his death and I bit my tongue and made fists of my hands, avoiding to bring up the things he told me about their relationship, which was already in the past then. I did not want her to hear about it, knowing in what mysterious ways the death can move in our minds. I did not want to create another  phantom there. It was all water under the bridge anyway. Now I am inexplicably sad about the departure of someone I hardly knew. Only by association. Two extraordinary, different and talented people, glamorous beyond belief, so young, both gone, I am lingering in the sheer tragedy of it. And feeling the pain which she must have left behind, the pain of her loved ones, her fiance, parents.. I know first hand what the loss of a child and a partner does to people, and when it is a self chosen one, the pain must be even deeper. I stood myself on the edge of a building too, no that is not true, at the foot of the building. The high rising flat where my sister was supposed to go and live, if she had not died unexpectedly and tragically of a missed appendicitis. The guilt almost too hard to bear, and that year my rosacea was all consuming, burning me up without respite. I could not even go to the shop without being stared at and asked if a doctor should be called, as people were fearing I had a heart problem, I was that red. Hope is the last one to flee, but fled it had. As Emily Brontë said it; hope was but a timid friend, watching how my fate would tend. She was cruel in her fear; through the bars one dreary day, I looked out to see her there, and she turned her face away! She would sing while I was weeping; if I listened, she would cease. Hope, whose whisper would have given balm to all my frenzied pain, stretched her wings, and soared to heaven, went, and ne’er returned again!

Luckily in my case there was still some hope. Medication later would make me in less pain, less flushed and gave me more hope. I also kept being reminded that life is not supposed to be happiness and fun and sparkles every day. That this is a social construct of these times. But that our grandparents would have been through both great wars, and were content just to have bread on the table. That I should radically screw down my expectations of life, yet keep hope for improvement. I am glad that I turned around that fateful day, afraid of the shadow of the flat. Life did become a lot better soon after. Although I still suffer from depressions. I don't find life all that great often, despite having a lot to be happy with. But sometimes it is also a state of mind, something inherited, something hard to shake off. I loath the ways in which my face still hurts, throbs, demands from me to live like a vampire, to be stuck at a desk with a fan so often. I am sad about not having children. I could have had them, or one, probably, but it hasn't been easy in the past. And I struggle too much with day to day life and don't want to pass this shit on. I was scolded once by a man in one of the rosacea facebook groups, for speaking out about this. He is an unpleasant figure anyway, but added insult to injury by calling me 'disgusting' for uttering this opinion. As if my own choices were supposed to brand and judge all the other parents with rosacea out there. Which is of course ludicrous. So many people, so many rosacea cases, so many different symptoms and severities and so many different attitudes and opinions. I struggle with it and doubt my own decision many times a week. I just can't be sure that if this flushing and burning problem gets any worse than this, that I won't look for that flat again. It seems self destructive therefore. Too big a risk, given that I've pretty much exhausted all treatment options as it stands now, and I am photosensitive and not a good candidate for IPL and laser. It can be hard to find purpose and meaning and satisfaction in life now, but I have my ways. Reading, writing, some friendships, family, my cats, connecting with nature, walks, gardening, avoiding social media where possible :) 

Albert Camus:  "Life continues, and some mornings, weary of the noise, discouraged by the prospect of the interminable work to keep after, sickened also by the madness of the world that leaps at you from the newspaper, finally convinced that I will not be equal to it and that I will disappoint everyone—all I want to do is sit down and wait for evening. This is what I feel like, and sometimes I yield to it."



You can read her blog here. It goes many many years back and is both beautiful and poetic. This is a beautiful homage to her, written by a friend, an ode to people who dare to be different and to the fragility this brings  

Some words from Raluca: 

"I’ve learned dysfunctionality from Amanda Palmer. I’m not sure it was running through my veins before our encounter. I was giving up pink cotton T-shirts and washed out jeans when she came yelling and showing off her long wide teeth, stained with some red lipstick from the night before. It was summer and I was waiting for a boy, we always wait for boys at the corners of our lives, and sleeping with the telephone next to my bed. His call would wake me up and I would listen to Amanda. Then somehow everything fell apart and I would trade love songs for bitter refrains. I liked Amanda from the start because her music would always tell a side story about worst case scenarios, like always keeping a suitcase half ready beneath all the beds you happen to sleep in.

I’ve learned dysfunctionality  from the best. There were so many people all around me, dancing and screaming and laughing and drinking and showing off their scars and crying their hearts out. There were other people watching them with contempt sparkling in their opaque eyes, like veils of prejudice and lack of understanding. They still stand now watching silently, they haven’t learnt to talk yet, they drink only on special occasions and start to quietly sob, thinking of all the madness they’ve missed.

Dysfunctionality is only temporary, one should bear this in mind.
Dysfunctionality is never a destination but an honest starting point which helps you build yourself.
Dysfunctionality is when Amanda starts writing a song, with a horrible hangover , her make-up running all over her face. You have to stick with her, then you have to watch her sit at the piano and start turning everything into gold.

There were days when I wanted to paint my face white, there were so many days when I used to wear black and white striped knee-socks. There were days I didn’t want to live inside myself anymore, there were days when I wanted to live inside her songs but she would always kick me out. She would sing and I would know I’ve got to get out and get back inside myself where there’s all that gold and sweat and love and madness waiting to be explored."


-----

Sleeping next to a white rabbit (source)

Ambivalence crawled into the wall of the bathroom as I crammed my body when I was sleeping. He put a blanket between me and the wall, between me and the world. She covered me and sang while I was asleep. Between us and the world lies a thin wall through which we hear the tireless voices as close as we close our eyes, and as closely as we hold our arms. That's why we put a soft blanket between us and the world. We hear nothing, and the cold comes only through cracks that we leave open. I fell asleep on the cat, kept his white fingers on his chest and snoring, just to remember in his sleep that he was not just a child.


----

I had to confess…I want people to see the insecurity, the constant gulping and all the rituals and my fear of shallowness. It’s not easy and I feel weak and numb and horrified when I sometimes peak and see the world of perfectfabricsperfectgirlsperfectpouts, but then I want to kneel , but then I just want to stare to wear to care.  I want everybody to see right through me. I’ve stopped hiding behind my clothes for some time now. I want everybody to look and smile, I want them to shine like the sun reflecting on my skin and skirt and then…the  dreadful afternoon, sitting on cold floors and not recognizing your own hands  or the way your nails are always growing. I want people to see the pure terror that sometimes paralyzes me, the Frank Booth in each of us, the Frank Booth standing at each corner of our lives, waiting  to be denied so he can burst into them with unfiltered rage. And then I want them to look the other way, but still knowing Frank Booth is underneath it all and see all the robins flying up in the sky. They’re be always eating bugs, that’s for sure.

—Sandy: I had a dream. In the dream, there was our world and the world was dark because there weren’t any robins, and the robins represented love. And for the longest time, there was just this darkness. And all of a sudden, thousands of robins were set free, and they flew down and brought this Blinding Light of Love. And it seemed like that love would be the only thing that would make any difference. And it did. So I guess it means there is trouble ’til the robins come.

—Jeffrey: You’re a neat girl.

[…]

—Sandy: Look. (She points toward the robin, as Jeffrey joins Aunt Barbara and Sandy.)

—Jeffrey: Yeah, I saw him outside. (smiling to Sandy) Maybe the robins are here.

—Aunt Barbara: I don’t see how they could do that. I could never eat a bug. (Ironically, she places a piece of beef into her mouth)

—Sandy (looking at Jeffrey and smiling): It’s a strange world, isn’t it? (Jeffrey nods in agreement.)

‘’The little robin (symbol of love and harmony here) eats a disgusting bug (a symbol of evil at the beginning of the film). No matter on which level of reality it is, what Sandy might have learnt about the world is that beauty and ugliness do not necessarily exclude each other.’’
(movie blue velvet)  (Source)


I have been writing as a penpal to a guy in prison in the US since 2010 and he wrote about this topic:

"Depression is a cold bitch. This may sound callous but I hope she weighted the pros and cons of her decision, and acted completely out of her free will. You must understand; I have been in prison for some time, and I'm not all that against suicide. I actually think about it at times, but my balance sheet is still skewed towards life. If I ever have more reasons to step out then I guess I may do it as well, and that has nothing to do with depression for me. Why every suicide is linked to depression I don't understand, because sometimes suicides are based on cold, calculating facts and personal choices."




May 24th 2018

I've had a full week of suffering a killer flu. I can't remember feeling this sick before from the flu. Such a high fever and all round misery, throat and chest full of mucus, head full, nausea, headaches, sore stomach. There was little point going to the doctor as they always throw antibiotics at you and meds to lower fever, and I didn't want those. Fever serves a function and antibiotics give me so many side effects, and they seem fairly pointless in treating a viral infection.. Unless there is a bacterial secondary infection, which I didn't count on with me. Just a good old case of flu, that started with a sore throat, stuffed nose and then moving its way further inwards. The problem was that I had a temperature of around 39,5 degrees Celsius (103 Fahrenheit) and this made my face feel so scorching hot and flushed. I tried to cool myself with fans and light clothing, drinking iced water and laying low. 

I picked the flu up from public transport I think, and more precisely: from flying. Wouldn't be the first time I got a little delayed present from my plane trip. Dealing with airport bullshit really seems one of the epitomes of the Byzantine nature of human endeavor anyway. Nowhere else does it seem more blatant that people feel the unshakable compulsion to mess with other people. Express lanes for the VIPs. Lounges reserved solely for business- or first-class passengers. Arbitrary fees and penalties. Early priority VIP boarding. Expedited security. For an industry that routinely needs bailing out, they sure do make life as difficult as possible for the vast majority of their customers. It is not like you can take a steamship instead these days. A captive customer base, yet the abuse! The people standing in the VIP lanes often have this look of disdain on their faces when looking around them, as if they want to pry out chav people accidentally ending up in the wrong lane with them. Think I will stick to the train from now on. 

We had remembrance day on the 4th of May. I was in a tapas restaurant with my sister and mother that evening and it was packed and very noisy. At a quarter to 8pm the waiters went past every table to ask for 2 minutes silence at 8 o'clock, as is custom on that day, and literally the music went out and all went entirely quiet at 8 o'clock. Even pizza delivery scooter boys in the streets stopped their scooters and stepped off them for 2 minutes. Same for those on bikes. The next day is Liberation day in Holland with lots of free music festivals, and one of the last Canadian militarists still alive who helped free the country was invited and driven down the streets in Amsterdam I think it was, with the streets full of people waving at him. The old man seemed to have a very good time, I do like those honorings. Remember a documentary about how many former Gulf war soldiers came back as a wreck, mentally or physically, and were left to live on the streets or kill themselves back in the USA :( Bet the same happened with generations coming back from other wars, or a small group of them at least. The deer Hunter is still a mighty good movie on this topic. You can say much about a civilization by the way they treat their war veterans.
But the veterans also tend to return to a world they no longer feel at home in. Not just because they got accustomed to a warzone, but also because western societies are quickly losing their community feel. We've gone from communities living together, to becoming customers; the damage caused by globalization. And by a generation marked by corruption, cynicism, greed, selfishness, cheating, lying, dumb and regressive values, violence, and all the rest. All that is reflected in the current pop culture, and worse, in todays younger peoples 'group units'. You always had some of this, it can be argued…. but then, people also had a soul. I really do see the positives of modern living as well; the advancements of the internet knowledge, of health care, of certain technology, but at the same time... it is strange to no longer feel like the Youth generation anymore myself. I can get so gloomy over certain news items or future predictions, the corporate greed, the Circle direction we're in, the plastic soup in the oceans, the wildlife that is going extinct, the annoying social media life and trends, that I don't like where this future is heading. I know that all generations bitched about the younger ones, but in these times the changes that used to take place in a lifetime, now take place over a decade or less. It is all going very fast, even seeing series from the mid 2000's back (I love The Amazing Race for instance and am watching backwards, so am in 2004 now), seems like a different world. No cell phones for most people, the internet was still something you had to go out of your way for to find in the streets. The pace of everything seemed different, the visual landscape was different.

This video for instance, a real gem. I read that the sound was later added and it isn't authentic to the recordings unfortunately. I was impressed at how accurately ambient noise was matched to some of the streets. However, one commonly hears the reverberation in such detail at night...when traffic is not so congested.  Still a commendable accomplishment. They also slowed the pace of the recording down which was great I thought; normally these early 20th recordings go unnaturally fast and almost become cinematic; in this video the pace has been reduced to a natural pace and it makes watching it almost like time traveling and being there at that time. Strange feeling almost, knowing that pretty much every single one of the people in this video are dead (and the animals too!). I love how they all dressed up smartly simply for going out the door. These days I see people walking in the supermarkets wearing their night gowns or pajamas's, its so rough'





While flat out in bed, I did have time to watch endless nonsense online. For instance, I saw this American cooking queen on youtube. First it was shocking: how can someone so obese make a 10.000 calories peanut butter pie?? (love the accent, "peanah buddeh pah"). How come she makes pizza's with so much permezan cheese ("pamuhsjan") that it could give an instant heart attack? But for all the evil comments below her videos, there are also some sweet and heart warming ones. There is something really simple and sweet about this  woman Sarah. She seems to prefer to live whatever many years she will be given, eating peanah buddeh pah every day, and enjoy her cooking and eating. She makes all sorts of recipes that seem to me (but I might be 

wrong) real American recipes. Macaroni and cheese for instance, you don't get that over here in Europe. I almost expect her to also pick up a snickers bar and deep fry it (like the Scottish do), put chicken sauce on it and then sprinkle it with smarties and sugar ice coating. Sarah seems so genuine and kind however, maybe that’s why she’s a cooking star. People smell fakeness from a mile away. Then I saw this granny who cooks like they did in the depression era. She is adorable. What a star. Unfortunately she died in the mean time I read, but she reminds me of my own gran who was marvelous too. Her post-war recipes remind me of what my gran used to cook. Here people used whatever grows locally, which are also lots of potatoes and unions and tomatoes.


I also watched the movie "The Lodgers", after a tip off. Am not a very weathered horror movie watcher, but I do love everything spooky, eerie and Gothic, so this movie seemed to fit the bill. It got a suspiciously lousy rating of 5.2 on IMDB, which usually means the movie was made in someone's garage. Or with cameras that come from someone's garage. Or just movies with Kirk Cameron. But based on this movie, the IMDB rating turns out to mean nothing. Because it was a perfectly well made movie. Very good acting, charismatic and convincing actors, gorgeous cinematography that really captures the eerie period piece feeling. The story takes place in Ireland, around what I suspect the 1920's. They shot the movie in an actual existing and supposedly haunted house in Ireland; Loftus hall, dating all the way back to 1666. The details were correct, it all looked the part, which meant no unnecessary distraction from the main story. And no unwanted complaining and criticizing from me while watching it. I was drawn into the story without being distracted by bad casting, bad scripts, dialogue, acting, sets etc. The story is about these young twins who's parents have passed and left them their estate. But… they have "rules" they have to live by, and these rules are imposed by the things that dwell in their basement. The action was very slow to come by, only started creeping in toward the end. But this wasn't annoying or boring. It followed a nice calm pace. The romantic side story actually felt like an authentic Irish love story, instead of what you'd normally see in today's Hollywood flicks.

Then it was another tip off, "Better Watch Out". A lovely Christmas movie about an arrogant 12 year old kid, his babysitter, and his best friend. Throughout the movie, from start to finish, all I could think of was the myriad of ways I would like to kill the 12 year old kid. It takes the innocent and charming "Home Alone" movies, and says "Welcome to the 21st century, guys! This is how we do Home Alone now!". I'll say no more, in case you ever do watch it….

I also read some article on a phenomenon where under stress, time can appear to slow down in the brain. https://www.livescience.com/2117-time-slow-emergencies.html I had this happen to me a few years ago actually, when on icy winter roads my car went in a spin on a round about, at high speed, and another car came up ahead of me and was about to crash into me. As soon as I started spinning and was stressed, everything seemed to suddenly happen in slow motion; everything seemed stretched out at least ten times as slow. Seemed to me a trick from the mind to give someone the time to think and act, to get the car under control again and get out of the way. It felt like it took me 15 seconds to get that done, when in fact it were mere seconds. I feel it is a trick of the brain, spiked by stress and actual fear, to increase performance skill and survival rate perhaps? It didn't feel to me as if I could just think faster, and that therefore time seemed to slow down. Thought raced but everything visually around me looked like something out of the Matrix, slowing. I could later never reproduce the same feeling in a planned event, like jumping out of a plane or going on scary roller coasters. http://brainblogger.com/2014/10/09/brain-trickery-seeing-in-slow-motion/
The time slowing down event is actually about perception and how the body under stress performs optimally, allowing it to process more information, absorb more of the world in order to increase the chances of survival. For instance, humans can perceive the world at 60 Herz whereas flies see it at 250. To the fly, we are moving in slow motion. That is why when someone senses an extreme threat, that extra adrenal juice makes them momentarily superhuman, to an extent. So time seems slower. It's linked to metabolic rate. (and that is also why you can only slap a fly to death if you do it in slow motion; at normal speed THEY see it coming in slow motion, but in extra extra slow speed, they can hardly see it coming).








April 28th 2018 

I had a really good skin week. Woke up pale, stayed pale most of the day, very little flushing although I still use the ventilator to keep it that way. Things that have changed lately and that 'might' explain the good spell; it has been warmer and sunny. I do very badly in cold weather for some reason. I have been sunbathing every afternoon (around noon) for about 20 minutes a day, face covered up with a big hat and keeping my head in the shade also. Have already a tan by now and no doubt made some vitamin D from the sun rays (I hope so at least, am very deficient in Vit D, testing my levels twice a year for some years now). I don't use sunscreen because it makes my skin react and also because my immunologist advises me to not use any, as my skin type (except from wretched annoying face) tans and doesn't develop sunburn. And because I am so low in vit. D, sunscreen would only block some of the UV rays. So that has been happening this week. The temperatures are also around 22 degrees outside (72 Fahrenheit) and indoors a few degrees cooler, so there are no very cold temperatures setting me off and also no big differences in temperature indoors and outdoors (another flushing trigger for me). Then I also changed some of my medication. I have been taking clonidine, propranolol, mirtazapine and Xyzal since 2006 for my flushing problem. I used to take 10 mg Xyzal every day. Now I upped that to 20 mg a day, as I had hives on my face. The hives are gone now and my flushing and redness are down a bit more than usual, so perhaps the high Xyzal dose has something to do with it. And last, I have been eating realllly clean... I know that not everyone with rosacea or facial flushing issues had food triggers. Some do, some don't. I react very much to diet though. And all week I have been eating simple foods:

-brown rice spaghetti
-sweet potatoes
-lots of stir fried vegetables; carrots, courgettes (zuchini), broccoli, yellow capsicum, green olives
-apples and pears
-100% all fruit cherry jam
-(organic) minced beef every day
-sometimes goats cheese
-other meats
-home made chocolate milk; rice milk + pure cacao powder + little xylitol for sugar + whipped cream
-pastries made from brown rice flour

It's not very varied but my skin has been so so so calm. I realize it mostly today, after munching down a whole package of rice crackers with milk chocolate topping and then some more chocolate. I am flushed and red and burning again this afternoon, blehh... Will have to be stern with myself and stick to the healthier diet and simply not buy anything sugary or chocolately. Diet isn't the whole story here because in winter I can be horrendously bad with constant burning and flushing, despite eating such a 'healthy' diet, and still flare, so the warmer temperatures must be related too, but after eating those 6 chocolate rice crackers, the weather stayed the same as it was all week, yet my face is playing up again, so in my case diet does play a role... Unfortunately my chin is still flushing at times and burning... I never had that before I tried out the ivermectin gel on my chin last fall. I wished I never did that, or at least tested in on a small patch of skin, not all over my entire chin.





April 22nd 2018 

Today I miss my old clubbing and concert going days. Listening to this excellent Röyksopp track on repeat:
   













April 14th 2018

My chin is still red, but I feel there are slowly but surely more white patches of skin appearing. I have put my ketoconazole cream in cetomacrogol on one side of it (my pharmacist prepares it himself, without preservative in the cream) and some antibiotic cream (bactroban) on the other side and there seems to be a little bit of improvement now. But every time I get a big face flush or get more red on my cheeks, my chin now gets more red again and even flushed too. Am still unhappy with that. But I hope that with time, and by leaving my chin alone now mostly (no make-up or zinc oxide cream on it, no forceful rubbing it with water and coton pads), it might still recover and get more pale again, like it used to be. I also notice that after using fluoride toothpaste, my chin flares deep red right away :( I switched to a non-fluoride one from squiggle, and my chin flushes less and the redness diminishes. But then after some days I get restless, out of fear of getting cavities without fluoride, and boom, chin is red and flushed literally within 10 minutes of using the fluoride toothpaste.. I read this forum post about the same thing, also bright red chin, interesting read. 

The scratch under my eye is also healing and although there is still a very thin and faint scab on it, and a slightly more pink patch under it as well, I don't even notice it anymore except for when I look for it when looking in the mirror. Will post a picture below. Over the Easter holidays I had a big skin flare unfortunately, with a lot of flushing and burning (and chin flarings too). Very untimely, I also had family stay over in that period, and not just for a few nights but for almost two weeks... Aiiii.. I'm not the most social person to begin with, but when my face is so painful I really want to see nobody except maybe one or two people I love. Not family I have to entertain and create a comfortable stay for. Because comfort for me during a flare is all windows open and staying cool and occupied with work. Whereas everyone else is easily cold and wants the woodfire on (instant flush for me). So I stayed upstairs in the bedroom a lot, making a make shift desk to work on. It gets claustrophobic over time and 2 weeks are awfully long then. Did join dinners/lunches, meals and sit togethers but got very flushed unfortunately after a while and without the fan on.. 

I also had to travel during this period and when I do, I bring a freezing bag along with frozen gel packs and a bottle of cold/frozen water. I have a medical letter from my doctor, explaining to airport security staff that I have a skin condition and need to bring ice packs and ice to keep my skin cool. So far I managed to bring my packs and ice on board in the plane this way, and it is ideal for waiting in hot crowded airport spaces. Anyway, this time, despite it not being a school holiday yet, it was packed at the airport. I'm usually very messy, chaotic and late with everything, so I had a false sense of relaxation when arriving very much on time at the airport, after some hours in the train. So I bought a drink and sat down to read a paper and bought some things and all that stuff, then leisured to the security checks... only to see a SEA of people waiting! 😲 My heart missed a beat, as by now I had only about 25 minutes left before the plane boarding would start. And I had bought extra expensive priority boarding at the gate, to not have to stand and burn up any longer than strictly necessary in the hot airport. Last time I went there it was near empty and I could walk to the gate within 5 minutes... This was going to take an hour, judging by the 2 scanning machines that were opened.

I asked a security person working there if I could take a fast lane, but was told they are for paying VIP airport members only, so alas.... She advised me to ask every single person in line if I could pass due to the risk of missing my plane otherwise. I was red faced by now and burning, so knew that was never going to happen. I want to disappear when on fire, not get attention like that. So when she turned away again I did a ninja/Jason Bourne-like maneuver and ducked under the separation line, coming out right near the scanning machines. Oops.. Nobody hissed at me but I also didn't look anyone in the eye. Only 2 people looked at me and I let them go first and waited for my turn after them, which meant dealing with 5 people in front of me instead of 100. Goddd I hate it when other people do this, but I would have missed my flight otherwise... I reckoned I'd better make it look like the staff member just told me I could do this, and not look around me, and just act as if this was the normal procedure. A rat move. If it were Germany (yes as a Dutch person there is a bit of a rivalty with Germany), I would have been caught, reported, cataloged, strip searched, processed, and possibly incarcerated in under five minutes. (If not shot). And this process would be accompanied by disapproving head nodding, ‘tsk tsk tsk’ and comments like ‘nicht Deutsch... keine überfrau!’.. (Jokes jokes, no need for anyone to get offended). And even now I arrived at the gate 2 minutes before boarding started, as they worked slower than a speeding microorganism at the scanners. Phew! The waiting terminal was packed with people too and the plane was entirely full too. Still no idea why half the country was on an exodus that day.

I also was super lucky; I found out at home that I had lost my external hard disk at the airport:1 terrabite, fully loaded with work, pictures, documents and tv series. Being sloppy by nature I had only made a copy of it a year ago... So everything from the past year would be lost if I didn't find it back. I got flushed and super red just from realizing it was gone and really not somewhere in my bags. I went through everything but it wasn't there. When I was at the airport, I had lost the computer battery charger from my bag while rushing to the gate (late again) from the parking lot. I hadn't closed the bottom of my trolley luggage thing properly, it turned out. I went back at the time to see if I had lost anything else, but I couldn't see anything and it was too late to go all the way back to the car (I know there is a pattern here of rushing for controls and boarding...). I reckoned I would have heard something fall on the ground otherwise, so that was that. But now it turned out that the most important thing of the whole trolley was gone. I called the airport and the parking lot and  tried to explain what had happened, but nobody had found or handed in a 'disco duro'. I was frantic. I decided to send them an email too, with pictures of the disco duro, and of my car, and a screenshot from google street view of where exactly my car was parked, red arrows and all in photoshop. I didn't hear back all weekend from them so assumed the worst. Then on Monday morning, an email came in that a cleaner had found the hard disk and brought it to the parking lot administration. I could pick it up or they could send it to my house! Fantastic!! I made sure the cleaners and the parking lot staff received a few packages of Dutch stroopwafels, amazing how some people still make the effort to hand a hard disk in, instead of erasing all that is on it and using it themselves. (Am making a back up as we speak).

I also watched  a very interesting English documentary, which interested me more than normal. Because it had to do with something I have to undergo myself regularly, and probably goes for everyone with rosacea, to some degree. A group of youngsters (mostly in their twenties) had to sit in isolation for 5 days, as a social experiment for which they themselves had signed up. 5 days in isolation, how hard could this be? I have had to grow so accustomed to living isolated lives during skin flares that it makes me forget that this is not always easy for other (healthy) people. The participants could bring 3 items of choice (no computers or phones allowed and no electronica either so no music). All these fruitcakes brought a letter from a loved one or a photo and hand cream and useless items like that. Lip balsam.  No one brought anything that would keep them occupied, like a massive thick biography to read or something, or pen and paper to write their memoirs or first book or whatever. This was destined to go very wrong..

 


One young mother cracked within FOUR hours (of a 5 day experiment). She came in all bubbly and thinking it would be a blast. All giddy and excited. The psychologist on board mentioned right away that she had worries about this candidate, as she seemed to lack realistic expectations of such an experiment, And low and behold; within hours of entering the experiment, she already didn't know what to do with herself; crying, pacing around. She had chosen a letter from her husband to take along (unopened.. NOT to be opened in the hotel before the start of the experiment, and assuming in its heading that she would probably be around day 3 before she got it so rough that she had to open the comfort letter -> instead she opened it after 3 hours). She had also taken playdoh clay with her and something else, a cream or something. She got restless pretty much within 5 minutes of the door closing and silence surrounding her. Then started to pace, then wrote a big motivational sentence on her board (YOU CAN DO THIS), then sat and panic crawled up on her face. This woman in her late 20's, a mother of a 10 year old, couldn't push herself to have the discipline to sit through the first waves of dislike. She said she had joined because she wanted her partner and son to be proud of her for something. To prove something. But she "just didn't like it" in there.. And didn't see the point of staying in a place she didn't like. Which was a bit surprising, given that hundreds of people had signed up for this experiment and she was one of the chosen ones, so you'd think she had mentally prepared herself for the possibility that an empty room without a window or a clock or any distraction, would perhaps not be the type of place that she would like. Because that was not the purpose of the whole undertaking. It was for her to let go of distractions and of outside stimuli and to come to herself. To open rooms in her mind that are usually left closed, as she simply was too busy with every day life and interaction with other people. 

So she pushed the emergency button and was taken out and sent home. Had to call her surprised husband that she was already leaving (he sounded like he had planned for a 5 day vacation and beyond surprised with that early phone call). It was surprising that she hated her own company so much (he own statement), and felt so lost without confirmation and attention from others, that she couldn't be alone for a single day. Maybe I have become too anti-social over the years though.. Maybe having this flushing condition and a visibly red and painful face has made me too comfortable with a quiet life and a circle of about 10 people I can tolerate to be with no matter how my health flares. It was confrontational to watch. Are they abnormal in their struggle to be alone? Or am I abnormal for being too comfortable with it? 

Another young man who joined, a real extrovert, always busy vlogging and being with his girlfriend
and mum, literally always checking his phone he said, was also having a very tough time in there right off the bat, but especially after 3 days. He had chosen a stack of cards to bring along, and a photo of his girlfriend and a pack of Yorkshire tea bags (essentials really). Playing cards with himself helped him stay occupied for exactly 3 hours, then he got bored. He started talking to the moving camera soon after, when he got anxious about being alone, pretending that it was his friend. The psychologist on board said that he needed to be seen and validated all the time in his normal life, and that this was his coping strategy in there, being isolated. Then to make his ordeal harder the producers stopped the camera from moving and that freaked him out and pushed him in depression mode. He had imagined that the moving camera was a person who he interacted with. They pushed him to that point, so that he couldn't distract himself anymore and had to deal with his inner feelings and struggles instead. This young man goes to the gym 5 times a week but he was so down and out from the isolation that he couldn't get motivated to do anything in there. Just sit in bed with a blanket around himself. The psychologist involved said his brain went into survival mode as he suffered so much from being alone with himself, and that extroverts need outside stimuli to get going with things.

I couldn't help but shout out loud at this point, why everyone had felt the need to bring in a letter or photo? Why not a pencil for drawing and a notepad. Painting equipment? Anything that helps you fill up the time and get into your own zone. The presenter of the program went in isolation too, solitary confinement and he only made it for 23 hours. He went slowly crazy, he said; had to push the button to get out of there. Almost a little bit "pathetic" given that he knew all about the program set up and was involved in the making of it. You'd think he'd know what to do and bring to sit it out.

The only two who kept doing relatively well were two women who are natural introverts and more comfortable with being alone. One did a lot better than the other actually but they stuck it out at least. One painted in there and did physical exercises, the other didn't bring anything worthwhile in terms of occupational therapy (lip balsam, a heart shaped stone and a pillow from herself) and went slowly mad, literally mad. Pacing around, grimacing, seeing monsters in the water drops in the sink, huddling under her blankets, making strange growling noises, first physically getting sick and vomiting for hours. She had a son and wasn't used to being all on her own with her inner void, she said. The TV makers almost took her out of the experiment, because she looked to go into psychosis, but she did finish the experiment... Just. The artist girl had had a dramatic event in her life not long ago, when the man she married and who she had been for 7 years, told her 4 months into the marriage that he was in love with another woman, and left her for her. She was really sad but also seemed to like the solitude in order to think about what happened and what she really wanted in life. I really liked her and her approach there. She had enough painting material and paper to make art all day long and seemed really calm and decisive. The ones who stuck it out all came to the same conclusion, around day 3 of the isolation experiment; they wanted to stand still more often in real life, spend much less time online and on social media ("Near strangers who wouldn't give a damn about how I feel") and show more appreciation and spend more time with the people who really do love them and care for them. And who they all took for granted, as they were too busy with their online persona. They all made those confessions to the camera in the room, independently from each other, after at least 3 days of solitary confinement. That was nice to watch... But as soon as they were left out, they got their phones back and the camera recorded them all gleefully happy scrolling through their phone for a loooong time. Curious how soon their old habits got the better of them again after the experiment ended :)

I have been writing as a penpal to a guy in prison in the US since 2010 and he wrote about it:

"The isolation experiment you mentioned sounds very interesting. Five days sounds like nothing; plus you get to pick three items to bring with you (can I bring an ounce of weed and a carton of cigarettes?). How about sleeping pills? What would you take with you? However, the experiment is nothing like in prison because 1. there is an option to quit and to get out. 2. You know when the isolation/experiment is over. In real life, more precisely in prison, there is no panic button and you're absolutely clueless about your release; it could be a few days or a few months. (It reminds me of when journalists were being water-boarded, just so they could see that it wasn't that bad. Of course the whole thing was pointless with the forehand knowledge). But I think the experiment is much more difficult than prison simply because there is an option to quit. There is absolutely nothing I can do to get out of that cell; I don't choose anything. Which one is more difficult: Running a marathon because you have to, or because you want to? I think having the option to quit but still keep going would make things psychologically more taxing."


I think there is perhaps too much of everything these days. Too many choices, too many opportunities. I saw this costume movie, A Woman's Life, after a French book from Guy de Maupassant, (Skip this paragraph if you still want to see it). Situated at the end of the 1800's, and the woman lives with her parents, then meets the son of a local church man, lives with him, gets pregnant, but he is a scoundrel who made the maid pregnant, then has affairs, one with her best friend. It's all terribly gloomy. She doesn't want to tell the husband of the friend, but confesses to the minister in church who then tells the husband himself. Next scene we see the friend dead in a field with a shotgun wound to the torso, the husband of the protagonist dead with his throat cut and the husband of the friend dead through suicide. Her own son is all she has and she refuses to have him to go school ("I KNOW him, he needs to play outside!") until her father talks some common sense into her and has the chap sent to school at age 12. Those were boarding schools back then. She loses him too as he falls in love with a girl and has very little interest to visit his mother and grandpa, who now live in one house after her beloved mother dies too. I can't count all the scenes showing her pondering outside a window, or looking out over sea. I felt they had too much time back then and not enough options in life.
But there is such a stark contrast with modern life. People today often don't even seem to have the attention span and patience to sit through a train ride without their mobile phones out. To have the common decency to talk with each other while in a restaurant without staring at their phones, looking for more stimulation. Everyone can travel now, something that used to be the trip of a lifetime often in old times has become a normal occurrence for many people now. A lot of stuff loses its special shine when there are too many opportunities for them perhaps. Even in dating people move on so very quickly, not  even taking the time to get to know the other better at least.Having so little to occupy yourself with that a lost love eats you away for the rest of your boring life is one extreme of course, as it could be in old times, and I am probably an old fashioned grump, but everything seems to go so fast these days. So much available, that everyone gets restless, the zap-generation. 


I have also been reading a series of books called Napolitan Novels, by Elena Ferrante. I'm in the 3rd book now (of 4) and they describe the complicated friendship between two girls from Naples during the 1960's and onwards. I quite like them, she does a good job describing the psychological factors at play in complicated female friendships and has a way of writing that constant pushes you to keep reading, It has a few soap elements to it as well perhaps, but it is interesting. I like to keep reading and find out how their lives pan out.

I also thoroughly enjoyed this video, with film material from Paris in the 1920's, coloured in masterfully.









April 1st 2018

I've not been doing great the past weeks. My skin is flaring on and off, and I have to sit behind thefan a LOT again.. I'm flaring from my pollen allergy and what bugs me most is that I have recently developed what seems to me a new stage in my rosacea :( Back in October last year, so 5 months ago, I tried out the ivermectin paste I had bought. On my chin.  I realize that ivermectin or Soolantra is mostly effective for subtype 2 rosacea with pimples and skin outbreaks. But there have been good reports about it also reducing skin inflammation and redness. It has very few ingredients; ivermectin, some filler and not unimportantly; propylene glycol. Which can irritate sensitive skin. I already had a pinkish chin on some days, at that point, but I only noticed it when I looked in the mirror. It didn't burn or feel hot and it wasn't too bad looking either. In summer my chin is pale and in winter or during a particular bad flaring period, it can become slightly mottled pink. So I put the gel on my chin and saw that it made it a bit white, which suited me fine. I had friends over that evening, but soon after applying, my chin started to burn. It really felt on fire actually. I sat through it for a little while, then excused myself and went upstairs to wash the ivermectin off again. But the burning remained. And my chin was red and flushed since. When my cheeks flare and go hot and red, my chin would never join them, but now it does.. And worse, my chin is flushed and hot and burning even when my cheeks are fine now, suddenly. I am very down about this. It was on and off in the months past that ivermectin trial. 

Then a few weeks ago I was fed up with my red looking chin and put some zinc oxide on it. I use zinc oxide regularly for little blemishes or a pimple, it dries it out and seems to act as an anti inflammatory cream. It never irritated my skin. Now my chin was nice and white from the zinc, but it did burn. I left it on for 2 days... And ever since my chin is beet red, worse than it was in the past months. It is flushing and burning 24/7 now! Even when looking pink, it still burns badly and feels hot and tight. I wonder if I might have developed some eczema there... I actually have two small eczema dots on my chin but I wonder if the entire red area, so 3/4 of my chin basically, might be red and hot from dermatitis or eczema perhaps... Because it feels so raw and looks so angry.

My chin before all this



My chin before after ivermectin gel use (the whiteness is zinc oxide)





My chin a month after ivermectin gel use





My chin now; it can look pale after waking up, but then it can go very red once I eat something, or when I flush my chin now flushes along (never used to)  







So this has brought me down.. I have since had family dinners, gardening sessions with a friend and every time I come out super flushed and red, but with a neon coloured chin. The chin, in fact, starts to flush first, before my cheeks now. I'm so worried that this will not go away and that I'll have this to deal with on top of my already very bothersome rosacea.... I wake up with pale cheeks and red throbbing hot chin nowadays. Depressing start of the day.. It might be somehow eczema as I find it hard to understand why it stays red even when I'm not flushed and have pale cheeks.. Or maybe it is perioral dermatitis? I can pinpoint this redder chin to the moment I started to use fluoride toothpaste again, over the past summer and ever since...  Not sure there could be a connection. Apparently fluoride use can give dermatitis around the mouth and chin. Not sure that to do either about it as everything I put on it burns badly and makes matters worse... I can't even put vaseline on it. Maybe antibiotic cream? I will make an appointment with my dermatologist about this. 

I also had eczema as a child and still get small eczema flares when stressed or with low immune system periods, this was back in 2007 I think it was, eczema on my chin:




In comparison, these are pictures from eczema/ atopic dermatitis from the internet.. some cases do look a little bit like my chin perhaps:








Something else... I read that after the information revolution, we are now heading towards the revolution of genetic engineering. Scientists are experimenting with CRISPR; programming plant- and human- and animal cells and doing DNA surgery.  CRISPR allows scientists today already to cut and paste in DNA strands. Like a programmable scissor, that can recognize a certain spot on the genome of an organisms, and modify the genome at will. The technology is based on Dutch research about little parts of DNA in bacteria, called CRISPR. Bacteria suffer from viruses too, like us. When a virus hits them , it releases DNA into the bacteria, in order to create more viruses. But bacteria have their own defense system, CRISPR/cas, which allows them to recognize the DNA from viruses and to find it and then cut to pieces.

Emmanuella Charpentier came up with a similar system to cut and paste DNA from organisms (CRISPR cas9). DNA consists of 4 substances, given the letters C, G, A and T.  The order of these substances dictates the genetic code of a cell. CRISPR can accurately read this info and change it. It allows DNA reprogramming through cutting and pasting in any cell, not just in virus DNA. She and her colleague Jennifer Doudna are up for a Nobel prize apparently, and won a lot of other prizes already for this discovery. They studied evolution, to change evolution. Rewriting our own genetical make-up. Reprogramming viruses, like an app would do; viruses are software anyway, like a memory stick, loaded with specific information, and once it attaches to a physical structure, that allows the virus to load its program onto the cell. That program is nowadays: print more viruses. But viruses could also be loaded with a different message, one that we as humans find interesting to program into the cell. For instance; make this protein, because it is a good drug for us, or load the program into a cancer cell and program it to die. Viruses can be reprogrammed and are like software; like an app. And viruses today are designed, from scratch, in order to make biological programs with new applications possible. All cancers have different DNA, but some people are already working on viruses that are adjusted to very specific tumour genetics. Special DNA printers can then print that DNA and put it in viruses. Every cancer patient can this way get a personalized cancer drug. Digital synthetic virus designs and it's already tested on dogs with cancer. An epi-pen for all of us, uploaded by the doctor and auto-inject. Personalized medicine. It's going to happen eventually. A medical netflix subscription with which you keep your body healthy.  Soon we can print medication and change ourselves genetically (I can't wait for that, hopefully before my old age they can cut out my genetic illnesses, ruthlessly!). People are trying to write programs now that eradicate cancer cells. Science students could soon have opportunities that today only pharmaceutical companies have. 

Hopefully the technology can repair genetic diseases, now that so many illnesses have been mapped DNA-wise in the past decade. But between a discovery in the lab, and using that discovery to develop a new technology and usable medication, there are usually around 20 years... It is also very expensive, so scientists are told to only go after the largest diseases and disease groups. But hopefully soon all the DNA errors that switches on genetic diseases can be identified and put into switch blocks and be eradicated or changed. And to build new biological constructions with them. Some people are already making and selling CRISPR-kits, for geeks to use at home; bio hackers (instead of computer hackers). Genetic engineering, in order to experiment, for instance with trying to make muscle mass grow. Changing your skin- or hair colour, growing more or less hair. Or attempting to have humans grow wings. Ultimately all the knowledge should be shared and people should be able to create the same stuff as pharmaceutical companies, but at a much better price. 

There is already genetic experimenting done on human embryo's now.. At a very early age when they are just a couple of cells. The worry is that technology will be used to make designer babies.  Of course you could wait for the moment that there are fights erupting about the patenting of (parts of) this CRISPR technology, which is going on right now. And many companies have started working on the technique and on the treatment of certain diseases, but out of fear that someone will steal their inventions or know-how, they do not share any of with with other companies or scientists. Which holds back the entire development pace. Not just a few companies (Editas, Caribou and Crispr therapeutics), but also especially big universities in the USA can gather enough money (hundreds of millions of dollars with each round) to have teams of hundreds of the best people around working on this technique now. Editas, Caribou and Crispr therapeutics can become the new Google and Apple of the future if the CRISPR technology turns out to be effective and profitable. 





March 12th 2018

    



I've been in Paris last week for some time and had to visit several art expositions to write articles about them. One was from a painter called Kees van Dongen (1900's), in Montmartre and the other one was in the Pétit Palais, about Dutch painters in Paris in the late 19th and early 20th century. Very nice, but it was very cold there. Seen snow and mostly minus zero degrees and arctic winds. I bundled up however and walked many days through Paris. We stayed in a friends apartment in de Rue Pelleport and it is near a part of town called Belleville. Also around the corner of the famous cemetery Père Lachaise. It's like a beautiful park of the dead.

I took the train and due to the outside cold, it was pretty warm inside.. I brought frozen gelpacks and a frozen plastic bottle with water, so I could cool my face from impending flares. It went fairly well, considering. I had a good laugh reading about the Brits and their Armageddon- (weather) warnings :D  The British tabloid newspapers had shown hysterical warnings about "The Beast from the East" coming over from Siberia (no, not their mother in law from East Essex), to kill them all. Shops panic-bought empty as a result of the media frenzy, all schools and public work places closed. Yet people stepped into their cars for pleasure trips and ended up caught for 12 hours on a freezing highway. It was quite bad in the end and people even died due to the bad weather, all over Europe I must add.

Scandinavians mocked the Brits this time: The difference between Scandinavia and Holland versus the UK is apparently that we are prepared for snow and ice, and they strangely enough are not. In Holland there are salt machines on the roads right away and everything is kept clean. The Brits say that due to global warming, these cold winters have become so rare, once every ten years they say over there, that there is no infrastructure anymore to deal with an arctic spell. Or local councils do not use money to keep things on the ready. To the average northern that sounds silly; you don't seem to need a whole lot of infrastructure, mainly a lorry with grit and salt to run through the main roads. But all that costs money of course. Apparently there actually are gritting machines, but they weren't used by local councils or there weren't enough of them. But the Brits are funny usually, so various councils decided to name their gritters to make the winter weather a little more fun. They wrote out a competition for best names for their gritting machines. 'Rule Grittania' and 'Salt Disney' for instance. Two road gritters in Doncaster were named Gritsy Bitsy Teeny Weeny Yellow Anti-Slip Machiney and David Plowie. Also Spready Mercury, Basil Salty, Grit Van Dyke, True Grit and Gritney Houston (haha). Transport Scotland's fleet of gritters have names like Sir Andy Flurry, Sir Salter Scott and Gritty Gritty Bang Bang, along with Luke Snowalker, the Ice Destroyer and Snow Queen. 😃

 




I also had to write a magazine article about the Canadian forces, liberating the north of Holland in World War 2.

So many interesting stories, but I have limited (article) words available unfortunately. They could have taken the city of Groningen in a blitzkrieg and destroyed the Germans in a day with heavy artillery, but instead the Canadian forces chose to go door to door with lighter weapons, to reduce civilian casualties, and because of that they lost more of their own men. More risks. The first was trooper Fred Butterworth who was shot in his Sherman tank by a Panzerfaust (the fear of all non Germans). Some Dutch SS'ers, the collaborators, had nothing to lose anymore and would dress as civilians and offer the Canadian men coffee or other drinks which were poisoned.., Some died of that. Imagine having a friendly looking Dutchie offering you coffee or beer and then finding out 2 minutes later that it contained rat poison. But soon after the Canadians mopped up the last of the Germans in Groningen. Those traitors, they were all sorts of SS types, they had many divisions. The biggest problem after the war was how to deal with the roughly 100,000 Dutch traitors who either sympathized with the Germans or flat out worked for them and helped kill and and loot their own countrymen. Some particularly brutal NSB-ers and nazihunters who also killed resistance men and women (my grandparents -my mothers parents - were active resistance members, my grandmothers family were themselves Polish Jews who came to Holland some time ago, my grandfather is also half Polish) got executed; mostly hanged I think, by the Dutch state. But many of the worst traitors who were convicted to life in prison or to be executed, managed to flee to Germany, who after the war and up until very recently when the last ones died of natural causes at old age, protected them and refused to hand them back to the Netherlands. That never sat well with Dutch people. Someone like Herbertus Bikker (the butcher of Ommen), a waffen SS member who killed many, escaped from prison, fled to Germany and got protection there for the rest of his life. Same for Heinrich Boere, Siert Bruins (a monster, convicted with the death penalty in Holland but living protected in Germany). The Faber brothers, particularly vile duo working for the sicherheitsdienst and the Waffen SS, both executioner in Dutch prison camps. One was executed by bullets, but the other was also protected by the Germans until he died all the way in 2012. I think we needed a group of hitmen back in the years after the war, Mossad style (I mean like they did after the Munich killings), who would have traced them down and killed them.

For all the lesser style collaborators, there were camps they were sent to. Sleeping on hay on the floor for a year, being treated like camp workers. 'Reforming' them back in decent citizens, or so was the aim. The government left them there for quite a while because if they had been allowed to go back into society early on, many would have been killed by still war-angry Dutch civilians, in 1945 particularly. There was so much suffering in those war years, especially the hunger winter when up to 30.000 people in Holland died from starvation. Many opportunistic farmers sold their food for prices higher than the gold price, to get rich off of other peoples suffering. It was very cold that winter and people ate grass, flower bulbs, pets, rats, Hundreds of thousand people went to the countryside to beg for food there or sell all their possessions in exchange for some potatoes and meat. In May 1945 the English dropped food from the sky (Operation Manna), which helped a lot. But the children who were conceived in the Hunger Winter and from an underweight mother, had later in life many times more risks of heart attacks and cancer.

The Canadians took 4 days of heavy fighting just to free Groningen and this battle was dubbed 'little Leningrad' by them. In Groningen they made this park and this art work as a thank you. It's fascinating that these Canadians, together with the English of course and the other commonwealth nations, went to war voluntarily, a million in total, on a population of 12 million at the time, to defend freedom so far from home. It's always interesting to speculate on 'what if this and what if that'.. If it weren’t for the Japanese bringing the Americans into the war by bombing Pearl Harbour, Australia could have been Japanese occupied now. Theoretically... The Americans won a key battle in the coral sea off Australia as the Japanese bombed Darwin. Their soldiers were all on European soil and some in the pacific. And Germany could’ve just occupied continental Europe and shared the spoils with Russia and Italy had Hitler not betrayed Russia. I would’ve been speaking German now 😊


Last week I had a very realistic dream. I was told I had cancer and only a few months to live! In my dream my middle sister (who died in 2004) was alive again and my youngest sister instead had already passed away. And I was so anxious and jealous of my middle sister being the only one to survive. I remember feeling this excruciating fear and sense of urgency. I kept asking my parents and friends why this was happening, hadn't I always lived super healthy? Healthy food (well, mostly haha), no smoking, no drinking, not even using any cosmetics. And I kept asking them too what would happen now? I was petrified to lose "me" soon. My life. Felt I hadn't done enough with my life, that it had only just started really. What did they think would happen when we die? No answer could console me; I was going to be nothing very soon from now. I had to join some swim course for some strange reason and I kept walking back, to get my contact lenses out (I don't even wear them anymore), to get a snorkel and there was a whole crowd of school children waiting for me to do my routine and I said to them: Guys be easy on me. I can't swim with a snorkel and I have terminal cancer and won't live much longer! I felt like I had to tell everyone. Madness. Was so happy to wake up, red rosacea face and all! I can imagine now what people who get such a diagnosis must feel like, its real panic..


I'm spending time and energy in helping to run an online rosacea facebook group. And it's no fun sometimes. Like with this blog, when you raise your head above the mowing line, you get barraged with rudeness and abuse sometimes. Positive but also negative responses. It can be disappointing when some people make unfounded assumptions, for instance that I would financially benefit from this blog. Nothing is more beside the truth, as for the decade now that I've been writing here (had a more simple blog before this one), I've never made a single cent from it. In fact, I'm against advertisement and would never want some skin care company (because that's the sort of companies that want to publish here) to make adds for products that are most likely completely useless or even triggering for rosacea skin. If I can't tolerate topicals, why would I allow publication that give off the opposite impression? I don't like other advertisements either, for the record. I accept that this thing only takes time and gives back some friendly comments and messages and also triggers some cynical people. What's new. So I do everything in my free time, without pay (not even those 'fund me' pages that seem popular now), yet some offended person - it always starts with asking for proof for some claim and someone having a hissy fit about this 'rudeness' - starts posting about the opposite. Always lurkers who don't contribute to the forum group much but are quick to bitch and gossip. Some time ago a person claiming I get financially better from this blog. No proof of course, no interest in that either. The other admins get abuse too, despite putting hours of free time into things daily, to advise people with rosacea on treatment options and to give support. What a thankless job sometimes. Because everyone is offended at the drop of a hat these days.

And lately there was a person who claimed that micro-needling (I'm literally quoting here) "is the globally recommended treatment by leading Dermatologists and Cosmetic Surgeons for Vascular Rosacea". This person flagged another member who wrote that it depends on someones symptoms and that there is a chance that microneedling can break more blood vessels. So attention was called to this post. When I said that it's trial and error and that for very reactive and sensitive flushers (microneedling has statistically more success for subtype 2 rosacea skin), microneedling might be a trial and error sort of thing, I got a personal sneer. The same for asking this person for proof for the claim it is 'the globally recommended treatment'; Did I ever try it?? (as if to say; If not, shut up) and the person who could provide the proof was the same one who invented this microneedling procedure. And another sneer at me for thinking I "know everything there is to know on this topic" (except that I clearly don't.. given that I had to even ask for proof for her globally recommended treatment suggestion). That escalated in a gossip fest about me. For daring to suggest that this might not be THE leading treatment protocol for everyone with vascular rosacea. I'm no authority on any matter, not a doctor. If I were, I'd not be struggling for almost 20 years now with this shitty skin condition, that is ruining my life until this day. But I've seen very good dermatologists, why would none of them tell about this mysterious yet wildly overlooked "leading treatment protocol"? It is not thé approach for vascular rosacea, but that doesn't mean it can't help. It might very well help. However warning very reactive skin patients to be careful and to try with care and make sure the thing doesn't actually stimulate more vessel growth, that is undermining her authority apparently. From what I could read in terms of research, there has only been one very small scale test done on rosacea patients and the outcome was that microneedling can help with mild to moderate rosacea but more so with the papulas than with erythema and flushing. Not quite the leading treatment for vascular rosacea yet... Of course the person went elsewhere to bitch about it (and me) and lie about what was really written and responded. That I don't allow for anyone to come up with a treatment to help them lol. All for coming back on the response this person flagged personally, that warns people with very sensitive and thin reactive skin with many broken blood vessels to be careful, as microneedling might be harsh on such skin types and that it is trial and error.

Just one example of the sort of abuse you get when sticking your head out. At the end of the day, I just gather information that is publicly available, on public forums and webpages, and put it in more easy to find blog posts. I know about some patients who heard in this way about anti flushing medication and who do a little better themselves from also taking them now. That's all I'm after; spreading information and hoping some other bad flushers like me find relief. I'm not writing about subtype 2 rosacea with skin outbreaks. I'm focusing only on what I know first hand; the red burned up flushed face problem that some people with rosacea have. The fact I had bad experiences with IPL does not mean it won't help for other flushers. I just recall what went wrong with me, and hope it helps people avoid the same problems (mostly by getting the right machine, the right doctor and enough test patching). The fact that clonidine and mirtazapine and propranolol help me, does not mean they will help everyone else with the same symptoms.* Some people might not like these medications, some might get unwanted side effects, some might be against prescription medication altogether. But at least the info about this treatment option is to be found online now. I'm normally happy to stay away from group dynamics, happy to have my own cocoon of fabulous people and pets and beautiful things I love in life, and stay clear of the group madness, and I probably am formulating things in the socially awkward manner that is me, but one can only do so much. People will always take offense. Everyone who does not like this approach can feel free to close this blog on their computer or phone and move elsewhere.


I sometimes watch train wreck programs on tv. Also to unwind a bit, as always sitting with your nose in books and dealing with nitpicking shit like getting a 1000 correct footnotes in a simple text is making me just very tired of seriousness at the end of the day. The problem arises I think when viewers take these programs serious and want to emulate the people in it (many seem either paid actors or fame hungry people). Temptation Island is one such entertainment program, as is "90 days to wed". With the Russian gold digger Anfisa and furry wog Jorge (update: they broke up). Staged or not, these people need awards for acting qualities. So in this new series of 90 days to wed, a 40-something (sympathetic albeit slightly over emotional) American woman falls in love with Dutch "stud" Jessie - 24. But he is an absolute piece of shit. I am stunned they allow his passive aggressive gaslighting and controlling psychopathy on TV tbh.

Here Jessie Bateman introduces himself:
  


The lovely Anfisa, enchanted to meet.. 
 

And here Darcey does: 
 

Here he gets very uptight about Jessie having a drink or two (notice how his house looks like it is situated right in the Red Light District): 
 


And here he goes full out psycho (if you ask me). She seems afraid of him too, he is going from calling her a bitch and cursing and looking like Satan incarcerated, to smooching it over again with Baby I love you's. She doesn't even dare to say what bothers her about him:
https://www.dailymotion.com/video/x6fsahj
Later (not in this specific clip) they walk outside of the studio into the street, he still visibly raging and walking like the Hulk with hemorrhoids, and he offered her his coat and she takes it in her hands and within 10 seconds he barks at her; Are you going to wear my coat or not?? I GAVE it to you!. And she makes herself small and apologetic and puts it on. What an ffing bully. Based on that episode, people came online to vent their shock and trauma. He also has a kind side but just seems so ruthlessly blunt :) Have to say that this is not uncommon in Holland. She wants a marriage proposal above everything else though, and that is not something that is done overnight. Jessie also keeps delaying it in the vaguest terms, even cruelly going on one knee.... only to give her a "promise ring"! Traumatic for poor Darcey!







February 10th 2018

I love my cats and am not afraid to admit it, despite the "cat lady" tag that inevitably comes with it. They also seem to love me and have amusing and adorable characters and quirks. They can go outside and roam during the day if they like, but I keep them in after dinner. I have them from when they were kittens and they let me cuddle them whenever I want. None ever scratched me or hit me. It's a treat when my cats decide they need cuddles, but soon after they have enough of that and turn their backs up for a good 4 hours again to do their trotting about outside. And I am not invited to the party haha, the few times I tried to walk with them beyond the gardens where we usually play, to see where they hang out, they made it clear I was acting out of line. As my funny friend put it: “Piotr, why is the giant shaved-skin accompanying us beyond the den? Does her ineptness know no bounds, Piotr?!” I'm cramping their style, for sure! We can be certain that whatever they had planned outdoors, a human would fuck it up. Hunting, we’re terrible at it compared to one of nature’s finest killing machines. Mating? Gross.

There is also a semi feral cat that comes round regularly for some food and some cuddles. I know how to read cat signs, with regards to their moods, but I got a bit too confident for my own good lately, and picked the semi-feral one up and held him on my shoulder, despite clear signs from him that he was in a pissed off foul mood (hissing, ears flat to the sides, even a growl. I mean, you don't need to be a cat whisperer to to be able to interpret that). I shouldn't have picked it up, but it usually calms right down from that. Not now! It clawed in my face! The thing I am always worried about
happened; a set of clawed marks right into my face!! I let out a blood curling scream, dropped the cat on the floor and ran to the bathroom to check the damage. It wasn't good. About 5 minor scratches and small incisions on my left cheek, but a big razer-rash under my right eye, that was bleeding and seemed deep. EEeeekkks!! I am literally worried for my rosacea-face even when I take the bike. What if someone hits me and I scrape my cheek all over the road? What if someone throws acid in my face somehow, somewhere? With the most likely scenario being a cat scratching my face, I should probably have been more careful with my furry friends. I had no disinfectant in the house besides betadine, and I didn't want it near my rosacea, so I rinsed the long scratch with salted water and started reading online about other people having their faces scratched by cats. Most advise revolved around adequately disinfecting the wound (and home made salted water didn't count) and putting antibiotic cream on it. I also read that to avoid scars (eeeeeeehhhhhhh!!), it is best to keep the wound covered in vaseline or  silicone gel. I wouldn't want a hard dark coloured scab, as they are more likely to leave a scar behind.

The scratch under the eye got red and painful the next day, and also a bit purple, making me look like I had had plastic surgery, but then without the actual plastic surgery.., so I saw my doctor. He is always nice and said I'd better clean it professionally with something he thought would be mild and least likely to piss off my rosacea, and to put some antibiotic cream on it and then something called hyaluronic acid, to try to avoid developing a scar. Knowing my luck with these skin things, people can most likely call me Scarface from now on 😊 The past 4 days I kept putting the antibiotic cream on it and also some silicone gel I bought, called Dermatix. It is healing but very slowly. When I saw my doctor again at the end of the week for an inflamed eye, he said the scratch wound isn't closing as fast as he had expected. Hmmm.. It can take as long as it wants to close up, as long as it won't leave me with a scar.  And my cold urticaria is going nuts in the mean time. On my right cheek I now have about 7 raised welts, itching badly and my whole cheek is swollen like I'm a chipmunk. I find this so very cruel... All summer I am suffering with a flushed face behind a ventilator and then the moment the weather turns cold, I am hit with this bulshit, and cannot go outside and still need to fan my face, as it is burning and itching from these welts. I need to see my skin specialist about this again pronto as this is driving me insane at the moment.

Back to my cats. I contemplated whether or not these skin rashes might be an allergic reaction to the cats, but I reckon that I would have had the urticaria in spring and summer and fall too then. And these itchy welts only erupt and ruin my waking days in winter. I had more trouble with cats the past months. At some point at the start of the year, I had a nightmare. So freakish it was, that I can still remember it. I dreamed that I was with a bunch of far away related family members in some house in a place I didn't know, I think it was in Germany. And the daughters, young teenagers, came running to us all excited that they found a nest of kittens. All ginger, all schmutzy and withered and not well kept, but somehow very cute. But when I looked closer, they all had something wrong with them. The first had a nose that wasn't fully closed, there was a black hole on the side of the nose. Then the next one was missing an eye. Eventually there was one who had only a tongue and a throat visible and a contour of a skull, but everything else in it was missing.. No eyes, nose mouth, cheeks, just an empty hallow skull and this tongue and throat. Shocking. They all huddled together, I didn't even dare to pet them. Very surrealistic. They'd miauw a lot and follow us around and I was torn between cuddling them and running away from them. Now is a dream often just that, a dream. I'm also taking mirtazapine as a drug to help reduce my facial flushing, and it gives me very good sleep and a lot of dreams. However, never normally nightmares. I also have a superstition about them, as I had what I thought were predicting (day)dreams before. My very beloved brother and sister cats Bassie and Charlie were only one year old, when I dreamed that I had to choose between them. Some sort of Sophie's Choice scenario. And I kept going back and forth, and then ashamed that I'd even make a decision at all, I opted for Bassie, as he was very clingy at the time and very needy and Charlie was self sufficient and the leader of the two. Then a week later she was hit by a car and died. That really saddened me for a good while. She was such a character and always came along with me on my evening walk. She loved running ahead of me and then waiting for me to catch up and she knew what parts of the road she could run free and what parts I would pick her up or have her in a basket for safety. She was hit when I was away for a week and had a friend watch her and bassie, which made matters even more heartbreaking for me.

Then with bassie, five years later (he disappeared two years ago out of the blue and was never found again), I had a similar thing happening. I was petting him one evening, as he was being the royal cat that he was, sitting at table with us and waiting for his treat nibbles, and I suddenly got this strong thought: what if he died, would I want him stuffed up? Taxidermy it's called I think. It freaked me out to get images of him stuffed up like that, and I gave him an extra cuddle. he was six years old at that time, so nothing to worry out. By now he lived in a very safe area, no risks of being hit by a car like his sister. Then a few days later, he didn't return from his usual afternoon stroll. I have been frantically looking for him for months on end, flyering in every door and public space, asking everyone if they had seen him, driving around calling for him, shaking his cat food. Walking round every single night and day, calling for him. Checking all the roads to see if he was hit somewhere. Giving flyers to every animal shelter in the region, making online missing pet adverts. Everything I could think of. And never heard from him again. I have no children, so I probably attach a bit too much to these animals. I try not to, as I know they have shorter lives than me, and I choose to let them out during the day as they simply adore running outside and laying in the sun, and because it is the great safe outdoors here. But there are foxes and wild animals living outdoors too and accidents can happen. Animals can get poisoned, killed, you name it. I have to accept those 

So after this freakish cat dream, I didn't think much more of it, as usual, but then a week later, my beloved cat Piotr, went missing too 😞 Same scenario as with Bassie; he just didn't come home one night. Piotr was the new kitten I adopted after Bassie never returned. Ever since that happened, I am fairly frantic about keeping the cats in after dinner and before it gets dark. But that particular evening I had been busy writing for a work deadline and Piotr had sneaked out after 6 pm. The door was open, he had done this a few times before and always came back once I shook with his favourite cat food. But not this night..  10 pm, no Piotr, 11 pm, nothing. By midnight I was starting to get restless, as he never wanders away far. He is quite frail and anxious by nature. He has a minx-like bobtail, which is a birth defect, and as a result he is not a keen jumper or fighter. He'd not usually be out alone long, and always stayed close to the home and garden. The other cats were in already at this point. I stayed up til 3 am, but nothing and the next morning I was super anxious to see if he was there as normal for breakfast (he is always first), but still nothing. Neither the days after. At this point I had been doing everything I could remember I did two years ago with Bassie's disappearance; putting flyers in every mail box in a kilometer radius, putting posters up, walking through the countryside and neighborhood several times a day, calling him, shaking his favourite pet food, listening at garage doors and in front of sheds for him, checking the roads, asking everyone I saw, but not a sign. By then I had friends with young children staying over for some time, and their oldest boy is a huge cat lover and wanted to go looking with me for Piotr all the time, which was very nice, he's a great kid. But I was having a hard time not to look and act very sad all the time. I kept wondering where the little darling was, if he was hurt, lost, afraid, stressed, injured and every other scenario I could think of. I missed my little Piotr terribly.

By day 6, I was convinced that I'd never find out what happened to him, and that it was the same mystery scenario as earlier with cat Bassie. I was down about it, but kept doing my rounds every afternoon and evening, calling for him. His cat blanket was hanging outside, shielded from rain and storm (yes to make matters worse it had been howling with poor weather), so that he might smell the way back home in case he was lost. But I had lost hope, because I didn't think he'd survive 6 days and nights without food in the cold. If he could have come back home, he would, as he usually wants nothing more than to be comfortable and near where I'm sitting. My friend tried to keep me realistic and said that outdoor cats do have rather short life-spans, due to a number of factors. That the reality of owning outdoor cats is that they will one day disappear. And whether or not I had contemplated giving my cats special tracking chips perhaps? Although the bigger danger there would be that people could be stealing the damned things from the cat’s collar! Though that won’t be too much of a problem, as I would just use my phone to find the person that had stolen the tracker. Yet… I would be concerned at the same time of having such a device, because if it stops moving for several hours… it’s not a happy ending. He also cheered me up by saying that I should realize that if I dropped dead in my apartment, my dear, loyal cats would eat me within days (haha). So that it is not necessarily a shared affection. That it has been said that cats are unable to distinguish humans from other cats. We’re just large, mostly fur-less cats to them. They’re capable of affection and even adoration, but sentimentality stops when life does. Should you remain alive and providing food, you’re a worthy cat-leader. Though they do presume we are retarded in the ways of the cat. They spray to mark our territory, because we’re inept at it. They’ll bring us dead birds and such, both as a gift and because they are concerned we’re incompetent at hunting food. My dad tried to cheer me up by saying I should get a puppy dog. Because they are more directly attached to us humans and less likely to walk away. But I just wanted Piotr back, and no replacement dog. 

Luckily the people in my neighborhood didn't forget about him either and kept asking me for updates. I kept hoping that somehow he would still be found. Without getting all sentimental, our pets become family members of sorts, friends even in some circumstances. I also decided I would buy the cats GPS collars as off now, as I'd had enough of looking for lost cats in the middle of nowhere, and nagging everyone around me with posters and flyers. Then after nine whole days and evenings, one afternoon, he was back!! 😊 😊 He jumped through the cat flap one Saturday with a mighty whining roar, half his former body size but clean and dry. I could feel his backbone and ribs when I lifted him up, and he felt nothing like the medium sized dog he used to compare to in weight. But he was purring and seemed so happy to be back. He was also very frightened, every sound made him literally jump up in the air in fright. He didn't show signs of injury or fighting, no signs of trashing through rain and mud all week either, so my best bet was that he was locked in some garage or shed, as this first Saturday of the New Year many people were busy cleaning up their sheds and garages, after the holidays. Of course he was slowly brought back on his normal weight, and unlike his normal self, he didn't want to go outside for around 4 days afterwards. 

I had set myself to comparing the available cat trackers online and deciding which ones to buy. They are already chipped but the problem is that these chips don't do anything other than show the owners contact data IF someone takes it to a vet with a scanning machine. They do not yet have tracing chips that show you where a cat actually is, but I managed to buy one proper GPS pet tracker to try out. Most pet trackers seem huge and more for dogs than cats (size wise), and the smaller ones on the market often only allow you to find it back within a couple of miles radius, sometimes not even one mile. Or they are not precise enough to distinguish where exactly in a village of 100 inhabitants the animal is. But I bought now something called Pod 3 tracker and it lets you follow or find your cat through GPS and Wifi, and you can follow him on street view or map and all. However! Then Piotr went missing again about ten days later..! He managed to wring himself through a closing door one late evening. Not a sign all night and then the next day he still was nowhere to be seen. Of course, knowing how he survived nine days out there, I wasn't as stressed about it this time round, but I did feel the OCD-drive to go round the exact same circles of investigation as I did the first time, as to not miss a thing. Which was tiring, as I wanted to relax and sleep, not call for a missing cat (again) in the dark. In storm and rain. By now I was already worried that he was hiding out in a place where I could not find him without his pet tracker (yes I bought a GPS cat tracker, but it hadn't arrived yet!). 

So I was walking around on the second night he was gone, calling for him but I didn't hear a thing. The next day, I walked round the usual places, and again nothing. Then at 7 PM I felt I needed to go one last time for the day and my cat Sophie joined me, when suddenly I heard Piotr wailing just around the corner, in an unused disheveled barn. There is a little opening in one of the windows, but it's a huge dusty empty monstrosity of a decaying building, and I heard Piotr crying with his distinct hoarse frog-like sound all the way on the other side. I tried to call him to move forward to this entrance point, but nothing happened. Manged to break one of the high barricaded window shutters open, and to climb in with a ladder and there he was; frozen in fear, all the way on top on some ledge I couldn't reach. He kept wailing and didn't move a paw! Took a lot of gentle talking and comforting for him to finally walk to me and when he got back home, he was ravenous and constantly crying for cuddles and shaky. I had noticed that there were wild pigeons in the barn so perhaps he had heard or smelled them and gone after them, then forgot how to find back the very small window opening. It is easy to access from the street, but harder to find back in the huge building once inside. 

Then it was getting fairly ridiculous with Piotr the wanderer as he went to his humble abode with the pigeons a 3rd time. But now I knew where to look for him! I found out that there is a dog living in between the house and that barn, so perhaps he was chased in there. Now he has his cat tracker on his collar and he hasn't gone missing since. I can also see that he doesn't stroll far from the house and hasn't once gone in the direction of the barn. Instead he goes to large unused gardens on the other side of the house. Although his cat tracker goes by GSM connections, so in a thick walled shed he might still not be traceable, at least when he is on the wander, he will be found, and through the history option I can also see where he last was picked up. They now look like these St Bernhards dogs in the Alps with a  small wooden keg with brandy around their neck 😊 (the Pod 3 device). Only their keg has spy wirings instead of alcohol. 

Other than that i'm accepting that it is just the way this animal is wired probably. I like to hink of him now as pretending to be a feeble limb to me, but at night changing into a prowling Jack the Ripper type, quite the ramblin' man, scouring the streets and looking for little birds. But I am still convinced that he is clumsy, ultra nervous and borderline 'Josti'. I am fairly sure now that Prince Piotr will keep wandering, at least until he is past his cat-adolescence age, and I rather have him in this barn nearby than looking for a new barn so I didn't close up the little opening he uses. He is neutered, so he is not high on testosterone. If I manage to keep him alive for another year, he might turn into a sloshed away tired old cat, in the end. 

Just to emphasize what type of animal we're dealing with here:



And some photos from my cat scratch 




Becoming a bit more blue the next day




Scab forming; I keep it 'wet' with vaseline and bactroban antibiotic cream





Faint healing that is going on..





And my cold urticaria (not to be mixed up with a moon surface photo)








February 2nd 2018

I've not been good the past months. My skin has been painful, hot and flushed, and due to the cold I have had cold urticaria on my cheeks on and off. When the weather warmed up a bit, they got less or even disappeared, and as soon as the cold came back (like the past days), I break out in itchy welts on my cheeks again, that fire the rosacea up too. I'm already on a triple dose of antihistamines (Xyzal) and doctor now added more zaditine and inorial pills. I hope it will help, as this is just a bit of a nightmare by now. I'm cooling behind a fan or with cold packs all my days but now cannot even go for walks in the winter anymore, as it is now too cold. I never had it this bad ten years ago, it started to get worse each winter since around 2012. Wrapping up outside with scarfs doesn't help much for me unfortunately. 

I'm trying to stay busy and I still go out, meet people, see places, but it is very hard with a face as painful and irritated as mine. I'm getting honestly really tired of this shit. Have it since 1999 now and there is just nothing that is curing me. I know there is no official cure out there, but even remission would do. Laser and IPL are often a radical treatment option, but I have had nothing but bad experiences with them. Doctors think my skin type and rosacea subtype are not suitable for them and to refrain from trying again. Sigh.. 






My hometown in Holland has been enduring (relatively small) earthquakes these past years. They are man made, as the state is drilling all the natural gas out of the ground, for many decades now. It is a hot political topic and today farmers went to den Hague, to the political quarters, on their John Deere tractors to protest some more. Rapports all say that the amount of gas that is still being taken out of the ground has to go down by at least 50% annually, but politics needs that gas to heat up all the houses in Holland cheaply, and then they have outstanding contracts with other countries too! For instance Germany and France, who buy gas. Its all one big cash cow for the state, but all the people who had their houses damaged or even collapse, are mostly still in court to try to get the damages paid back by Shell, the NAM and the Dutch State. Its quite the shambles. A rapport telling the state about the instant need for severe gas reductions, if they want to keep the north safe from the worst earthquake risks, was sent out in 2012, and instead of complying, the minister and politicians in power at the time cranked up the gas drilling and continued to make contracts for gas exportation. It is all coming out now and I am surprised that no Shell hot shots have been violently taken hostage by now.


Train incidents

I have been taking the train several times lately for long trips, and sadly, every time it was involved in "a collision with a person" (aka: suicide). The other week I felt the train coming to an abrupt standstill in the middle of nowhere, on a track where it wasn't supposed to stand still, then followed by silence. I assumed right away it was yet another sad incident. Must have been the 4th I encountered in the past year, while sitting in the train. It was very warm in the train and my face was flaring, so I stood near an open door. I could see the train driver standing in tears next to the train. Heb said he could not drive further as he was too upset. There were telephone calls made with police and help services. They told passengers what had happened and to stay put; that they were not allowed to step out of the train, as body parts were still stuck under and next to the train and this was not something anyone would want to see... The train stood still for 2 hours, as police took care of the scene. And people in the train were angry because they weren't allowed out on the platform to smoke, before the scene was cleared. Some started to argue with train staff about it, insisting they'd be let out to smoke, and some staff got angry in return. Eventually passengers all started talking with each other while waiting near the door in the train. One girl was crying and comforted by her girlfriend, others asked if I speak English and if I could translate what was happening. People shared stories. I felt sorry for the train driver who was very upset and kept saying he couldn't drive further. One of the staff, a girl in her 30's by the look of it, said she had never had experienced this before either. Which surprised me as the high speed train I was in (300 km/hr) would seem the first choice for anyone with a certain death-by-train wish. It was sad. Then, when I was finally able to continue my travels in the evening, another person jumped in front of thát train.. Two in one day, what are the odds. 

People in the train seem annoyed every time this happens. Everyone has appointments of course,some will miss connections with other trains or airplanes. On the other hand; at least our trains are pausing, to clean up before the train proceeds on its somber way. If the train would just keep going, it would soon look (and smell) like India here. It already does in some ways. India... do they even pay for a ticket to ride on the train rooftop? Imagine if the train didn’t even bother to stop. You see this sort of thing in third-world countries. Trucks will crash, full of migrant workers. People slow down to gawk at the carnage, but no one stops. No one cares! 

I can't imagine what train drivers have to go through when they see those troubled people jump in front of their trains. Recently a father with his very young boy on his arm. My friend Petra works in the care sector and had one female client of hers also jump in front of a train, she told me. "Everyone saw it coming, there was no stopping her". And a friend of hers is train driver and says there is at least one jumper a day now in Holland, often more with an average of 1000 deaths by train each year in our small country alone. It is incredibly sad that the rail service has to handle this national problem, that train drivers have to literally come as close as can be to the moment of death and impact of these poor souls. There has been talk in Holland about legalized euthanasia for people who simply choose to do so. Nowadays you can get it when you can prove you have endless suffering with no realistic hope of improvement. People with terminal diseases for instance. But there has been a political proposal made to broaden the criteria and to allow people in who are not having a terminal illness, but instead have their own reasons for wanting a way out. There would still be a selection procedure, talks with doctors and psychiatrists and a mandatory 6 month waiting time period to possibly change their minds. So this one would not be for the impulsive-hearted. It's not yet allowed here but it might be in time to come. Now, depressed people have to go to such extremes as to throw themselves off of buildings or in front of trains, making it something for train drivers and people down the street to deal with. Apart from running the risk of not succeeding and ending badly injured up in a care home or wheelchair. And not just that, it is a huge expense for the railways too. Every time this happens, people are allowed to get taxi's to their urgent destinations on costs for the train company. People can get their money back for their train ticket if the delay is more than one hour. This argument is of course of lesser importance in the discussion. But it is a bit morbid that the national train services are now the main executioners of suicides. Or people now have to save up 10,000 euro's and go to a Dignitas clinic in the Alps if they want anything remotely similar to take place.

On the other hand, Europe is probably wary of a centralized location for providing death en masse to others. It could prove to be a lot of confusion and messiness to organize it. I could see a person with a brain tumor that has no chance of recovery having a medical option to take a pill and fall asleep for the last time. Someone with altered brain chemistry or just a morose pessimist perhaps shouldn’t be given the same option.. I don't think it's going to pass parliament any time soon, too many bits and but's attached to it. Also, it surpasses the pivotal question WHY so many people want to take their own life? These days.. In Holland there are nearly 2000 suicides each year nowadays, 5 people each day statistically. In the United States there are annually over 32.000 suicides, which comes down to 87 each day. Worldwide one million people take their own life each year (nearly 2500 each day). 58.000 Europeans die from suicide annually, more than all the victims of violence and traffic accidents combined. In Holland there are around 500 people each year who request the right of euthanasia due to psychological illness. Only 1,5% is in the end accepted. Out of those who are rejected, 10% commit suicide afterwards.

So why so many suicides, in these modern times with so many technical advancements compared to the ol days? We have such good living standards.. Could it have anything to do with the growing secularization? Is it the lack of experience with suffering (and having objectives) in life? Were people in the past too busy surviving, or had they too much fear instilled in them for implications for the afterlife? Are there not enough opportunities for people these days? Has it got anything to do with this idea that everyone has a right to be happy, all the time, magnified by seeing everybody elses happiness on social media? Has it to do with the growing nihilism? A lack of moral values? The secularization here in the West? The dreary weather? I know of a strip in Portugal, in the sunny south, that was traditionally plagued with suicides, but those were mostly due to extreme poverty and the inability of getting out of it. Maybe instead of going towards assisted suicide, we should look into why so many people commit suicide in the first place. On a bigger plane there is of course all sorts of stuff happening, but how many people are experiencing this consciously to the point of it driving them to suicide? The disappearing middle classes, most new wealth going to the top tenth of 1%. The millennial generation being the first in its history to expect a poorer standard of living than the generation preceding (thank you, Wall St.! ;-) ). Low minimum wages that haven't kept up with the cost of living since I don't know... 1826. Combine that with a skyrocketing cost of living. Jobs going out of the country at a rate that's even higher than how often a Conservative lies. Domestic jobs being destroyed if a company can replace the job with a machine and save 15 to 20 cents. The new jobs of the future that will replace the lost jobs, ie. "job replacement machine repair person", will be far less than the jobs being replaced. Politically their choice being either Pepsi or Coke. Something's gotta give. They can take a few years of this, but the longer the situation goes on, the greater the unrest. The greater the unrest, the greater the anger, fear, resentment...

And I also feel (but might not be correct) that people these days, especially younger people, might drift towards a trend of honour suicides almost? I read these things more and more often. That is almost Japanese in its repentance seeking. You probably wouldn't dare taking your life over delivering the wrong note to the wrong person back in the days. Now ego and reputation are extremely important, because news travels so fast now and sticks too! Back in time, I was the topic of conversation and gossip for a few weeks tops, when a friend snitched on me when I was secretly out partying with some older 'cool' kids, when I had told my parents I'd have a girly sleep over. I was found out right there on the party and it was a right embarrassing mess of a situation, and in my village the people all heard about it... And talked about it. But then something new happened with someone else soon after, and that was that. No social media coverage on it, no info that lingered on the net long after. Nowadays they put nude pictures of others up and it will stay there for ever if you are unlucky..

It used to be predominantly artist who saw all the suffering in the world and at some point couldn’t take it anymore, not kids who became all emo and thought that life sucks. In poor countries the suicides statistics (the official ones at least..) are lower. Perhaps because they don’t have much free time and ease of life to contemplate these ideas. They have to survive, have responsibilities for other people and relatives often. Maybe we just have it too easy in some ways in the West now. Loneliness and isolation might be the biggest reason however. The collective feeling and being has been broken down in the past century. I love books from the 1800's-early 1900's, and back then all of society was divided in strict and magnetic columns; subgroups. People identified with them, belonged to them and strode often for them. Think of big workers union collectives, always defending one subgroup, never the whole of society. Political ideologies were also developed with the interests of one of these subgroups in mind; the working classes, the bourgeois (a bulging class of a thing back in the days) and then of course the aristocracy and the industrial rich. And never the twain shall meet! That had its negatives of course, and modern society at least is a little bit more transparent and easy to work your way up (or fall down) in. But the past 50 years the individualism trend has also taken root and people now no longer have their strong identity-tied social/political/or even religious columns where they belong to and get also a sense of community from. That can make them feel lonely and isolated. I think this trend will continue, under influence of the ongoing technology. The way we use computers and our smartphones only drives the physical wedge between other human beings around us wider and greater. We will only live more inside our own minds and virtual reality in the near future. If anything, I think the emphasis on peoples own lives and their own almost hedonistic craving for experiences, will only increase. That will seem more important to them than some ancient near-Marxist crackling theory. I think anyway that the time of great radical political-economic ideologies are behind us. We had all of those in the past centuries.  Everything in our modern society is geared towards further individualization, further pushing the life of experiences and comfort.

High intellectuals of the past would always complain about the younger generations (they were even complaining in The Great Gatsby for instance), who were supposedly reading books that were "unfit" and "trash", Yet by our current standards, we call them classics. They still helped to keep the mind sharp and introduced new perspectives and challenged old ideas. Less people read now, apart from the dopamine inducing blurbs from social media. We are losing our attention span. People used to enjoy just sitting outside, watching the world go by, or going for a walk and meeting a friend at his house was a big event, nightly discussions being the most enjoyable forms of entertainment. There was a give and a take, now all is thrown at us. We call our world interactive, but in some ways it is really passive. Social interaction reduced to our smartphones and computers. And also, in Western countries we think of life as being linear. Past to Present to Future. In Asian countries more people think of it is a circular phenomenon. So reincarnation makes sense to them. Here we think we can take our own lives and the pain is over, we sleep forever, painless. From an Eastern point of view, things are about cause and effect; every effect has a cause and there is no cause without an effect, so to them the concept of only living one life doesn’t make sense. In their opinion, people who take their own lives think that they are getting a one way ticket out of their suffering, but really they are just creating more for their next journey. 


I have thought about suicide myself, many years ago. When my rosacea was utterly debilitating and wouldn't calm down even when I had fans on, windows open and cold packs attached to my face. A whole year I was burning up and nothing seemed to help ease it. I did not want to die, but I wanted an escape out of that misery. Every doctor I visited could only come up with a prescription for antibiotics (which made my flushing worse). It seemed suffering without end. Luckily a friend from the rosacea forum, Peter Waters, took me to his dermatologist in London, Prof. Chu, and his anti flushing medication really helped me to make matters more bearable. Unfortunately, 12 years later, I am still having many bad rosacea flares and have had to adapt my entire life to this shitty condition. I won't say that suicide is the easy way out, but it does leaves those who love you left behind with a lot of guilt and trauma often. Your life is given to you, in whatever way you look at it, and it is most likely our only life here so we just have to make something good out of it. Even when struggling with daily pain and a very restricted life... And not compare our lives too much with that of others. Which is easier said than done

I read a beautiful passage in a Hungarian book recently, it's not a poem but it probably could have been. Of course it's sad and melancholic, but I'll copy it to here:
I would leave everything here: the valleys, the hills, the paths, and the jaybirds for the gardens, I would leave here the peacocks and the priests, heaven and earth, spring and fall, I would leave here the exit routes, the evenings in the kitchen, the last amorous gaze, and all of the city-bound directions that make you shudder: I would leave here the thick twilight falling upon the land, gravity, hope, enhancement, and tranquility, I would leave here those beloved and those close to me, everything that touched me, everything that shocked me, everything that fascinated  and uplifted me, I would leave here the noble, the benevolent, the pleasant, and the demonically beautiful, I would leave here the budding sprout, everything birth and existence, I would leave here incantation, enigma, distances, the intoxication of inexhaustible eternities; for here I would leave this earth and these stars, because I would take nothing with me, because I’ve looked into what’s coming, and I don’t need anything from here. - The World Goes On, Laszlo Krasznohaorkai


I assume that people who take their own lives, lack a sense of having meaning in life. Although parents also take their own lives, so having children, and having therefore a meaning and a purpose, might not always be the solution here. I certainly find it harder to find meaning in my own life with a lot more free time and no kids to demand all my attention. I sometimes struggle with this dilemma, what meaning to give my life. In day to day life, looking after your own offspring must be very rewarding and take away a lot of time and opportunity to ponder about your own meaning, as it is often right in front of your face then. Although I don't think many people have any real meaning in the big scheme of things. Parents think they enable the lives of hundreds, thousands, over time by having kids, but their DNA in the end is reduced to 0,00001% of all these future human beings. If you believe that we are only born out of this one exact mathematical option, this minute opportunity in time and space (namely our own parents, grandparents, great-grandparents and then count back a few thousand years), then that would hold truth, but from what I understand from Eastern religion, some think our soul and spirit aren't created in such a way and would have found another body or another set of parents if need be. Who is to say what is true, I certainly cannot.

At the end of the day, most people have very little legacy at all, outside of parents of course who are very important when it comes to a legacy. Thinkers and scientists and researchers and writers and all that stuff; they last a century usually, tops, then most of them are also forgotten. Maybe the whole reason to be alive, the reason for living, is to let go of the ego, and accept that ultimately we were nothing and will be nothing and the main life lesson we have to master is the art of letting go. I don't know, I think everyone one way or another looks for purpose and meaning.

Like Zen mediators and poets such as Rokan say, "our lives are like a bubble on a blade of grass". Time passes in the blink of an eye, and so when we realize this, we stop taking it all so seriously.

And modern people also seem to crave a lot of NOVELTY. In their free time, in their professional lives, in their private lives.. Familiarity breeds contempt, said Aesop. People come to take one another for granted. You’re my wife, of course you’re going to be there when I come home. Of course you’ll be asleep beside me, that is the normal routine. It takes an outside influence to change this routine, one that we adapt to as necessary. There is no excitement in this! Domestication can be the death of novelty, which is a concept humans treasure above most. If I told you that I could replicate the work of Isaac Newton, no one would be particularly impressed. Novelty is the true test in a person’s life. You have to do it first for it to be exciting. I could recreate the Mona Lisa in exacting detail, and no one would care… outside of people that are always on the lookout for talented people able to forge artwork, of course. No one becomes famous replicating the work of others.

Yet people want to be constantly stimulated these days. Having a wonderful partner is often not enough in the long run. The excitement calms down and then what?? More people now seem to want to be eternally chasing the dragon. With the death of novelty comes the death of true appreciation.

Books also touch on this problem. If someone has a great life, and everything goes swimmingly, then there is no story to tell about it. Stories are always a response to a problem. There's no great novel or even a bedtime story about everybody being at peace and content and happy. It's always restlessness that creates drama and also empathy, because just like there is no story about a perfect person, there is no reader who is a perfect person. Everyone is wrestling with his own anxieties or challenges or the distances between where he is and where he wants to be.

Our own identity is often a construction. Something we think of ourselves, we think we are this this this and this. We build a construction that we can live with, our own idea of what sort of friend, partner, employee or citizen we are. It's only once they are challenged that people have to fine tune or even correct this image. And we're all evolving anyway and being shaped by stuff that happens to us. Some things might seem insignificant in the short term, but turn out important in the big scope of things, changing or breaking some things irreversible (think of the discovering of infidelity for instance, or being put for a difficult choice and having to live with your decision for the rest of your life). But in a way it are those challenges that really define our own identity. You can no longer hide behind a self made construct then.  Like in wars; people often like to think of themselves of someone who would do this or that in such and such situation, but you won't know for sure until the situation actually arises. For instance; what we would be like in a war. Or during serious illness. Maybe we are lucky that such a situation almost never really arises in life, or maybe we are unlucky because of that, because we never get a reality check then to the self image we made, continuing to live as actors almost. Never finding out your authentic self. There is something to say about having no real problems in life, but from another point of view you could also be happy about having existential problems and challenges, and how they enable you to further refine who you are and what your capabilities really are. How strong you can be, or how inventive (or how morally corrupt lol).

And then you have the misdiagnosis of small and big issues. People fretting about small stuff (vanity, materialism, perfectionism for instance), and people on the other end of the spectrum constantly misdiagnosing big things as small stuff. Think of marriages or relationships that are on the decline; people can hold on for a very long time that all the signs of impending doom are just small and insignificant futilities. That he or she no longer kisses you on the mouth when leaving the house. No longer makes two cups of tea. Or no longer brings home small gifts. All small small small, until it adds up to the break down of a relationship. But the lack of happiness is not unhappiness. There is something to be said for contentment too. I just don't think we have a life long prescription right for 'novelty'. Some things belong to the formative years. Some things will never become novel again, no matter how frantic some people search for it. More and heavier drugs are not going to reproduce that First Time effect. Chasing the dragon. But sometimes people have so much in a relationship, outside of burning passion. I don't like the flashy fastness of these times and the desire to live fast and happy all the time. With so many casualties along the road, who think they fail at life because they cannot keep up with the happiness machines. At a certain age, you better acknowledge and accept that a few notches less can still be a very good thing too.


The Stoic approach to life would be to wake up each morning, thinking that this could be your last day. It is something called negative visualization, imagining people you love are dead. Not just as a thought and a conceptual idea, but really spending a few moments each morning feeling what it would be like for this to be a reality. Because some day it will be. Some people would call this line of thinking morbid and depressing; a terrible way to start out your day, but it is something some easterners really do, from what I understand. Let’s take the example of a father and a son. A father is sitting in his chair, reading his paper, his 8 year old kid keeps trying to get his attention, they are supposed to go to see a sports game, but the dad wants to read his paper instead. He shoos the kid off, but the kid returns 10 minutes later, again the dad shoos him off, this time irate, all dad wants is a few quiet moments to read the paper, the kid comes back 10 more minutes later and says the game has already started. Now, if the father practiced Stoicism, he would have woken up and thought about what life would be like if his son was dead, feeling today how he would have been really feeling if his son had passed away for a year already today. In this scenario, the father starts to read his paper, the son asks about the game, the father feels gratitude that his son is alive and realizes that the paper is meaningless compared to spending time with his son and he drops the paper and they head off to the game. It takes work to create the habit of putting this into practice, and we can’t do it with everything in our lives, but I try to think like this at times when I feel low about life in general.




Jordan Peterson and religion

For many people, religion of course gives a framework to live by. Jordan Peterson is a professor and psychiatrist who has a lot to say about that, I'll add a video that was trending the past weeks in the media.

 

This interview is already from a week or more ago, but it got a lot of media hype coverage. In this crazy interview, Peterson is questioned on some eye catching topics, including equality for men and women in the work force. Peterson is a traditional Christian and quite conservative. You'd think a good interviewer would easily shoot some holes in his story. But unfortunately that didn't happen. Peterson sounded cool, calm and collected, solemn almost, in contrast to interviewer Cathy Newman. She blew the entire interview up with her insane tactics, seeming either incapable or unwilling of having an intellectual debate. In fact, she even seemed to have a chip on her shoulder and an agenda.. She wouldn't listen and summarize an opinion given by him 10 seconds earlier, instead coming with "so you are saying that" every single time (but then assuming something he didn't even vaguely or remotely say). Her tactic every time he said something was to form the first half of her request for clarification,with something he said with the second half, being misquoted or presuming the worst possible intent. For instance regarding the difference between opportunities and equality of outcome. (Equality in opportunities should trump equality of outcome). It almost looked as if this professional interviewer didn't have the necessary skills of inquiry to explore them and rigorously test them, let alone defend them against a scientist. Every time Peterson was trying to argue that men and women are different and are wired different, trying to explain how evolution plays a role, typically, instead of trying to understand, she attempted to discredit his argument with hyperbole. “So you are comparing us to lobsters??”. A well worn path in that if you can’t compete with facts on an intellectual level, you take something out of context in an attempt to mock your opponent.

It backfired on her, as she received a lot of criticism since. I think she embarrassed herself in this interview by continually misinterpreting and misrepresenting what he said and meant, which soon proved a worn and tiring tactic. Instead of acknowledging the error that was made, she and channel 4 then pulled the victim card, saying she was being trolled online and was under 'hate attack'. For valid criticism. Not surprisingly, the usual suspects in the British media linked Peterson to Nazis and hails him a hero of the extreme right. Which he might be, but not based on this interview. And not based on his own online videos either. Peterson normally has some main topics he undresses and dresses up all the time; he defends the traditional marriage structure and the traditional gender divisions. I do not agree with him on most topics. He is against gay marriage, he thinks all human worth lies in having a family unit. He is a Christian traditionalist. He jumped on the pronoun/transtrender bandwagon (and he wasn't the first to do this) and that is why he is now trending and getting more widespread views. I listened to his college classes a year or more ago already, and they are quite basic, traditional takes on psychology, with a lot of ramblings about traditional christian values, Dostojevski and Nietzsche. The man is a pessimist.

The thing with Peterson is that he speaks from a Christian point of view.  He believes in the construct of religion, in the sense that it highlights how we should live. He believes in God, but he has a strange definition for what religion is:




And he believes in God, but refuses to admit it. Here he continues to dodge the question in the most amusing manner:

"I act as if he exists and that is a good enough answer to me". Aka; he dodges the question, and I think he acts so uncomfortable and defensive/evasive about it because in this day and age, scientists are not really widespread religious anymore, and it opens up a whole new field of possible criticism towards his further work, especially when he refers to the importance of 'facts' in there.
He tries to tap dance around the question by saying that he doesn't know what people mean by the terms "believe" or "God". Really? So ask them to define the terms. Oh, he says then, but they only think they know what they mean by believe or God.. He's just playing a word game here because he doesn't want to be 'boxed' as he says. I listened to a podcast debate on 'Truth' between him and a neuro-scientist I love to listen to (his podcasts), called Sam Harris. Sam gets so frustrated with him on the truth question, that the whole discussion derails soon after. It's 2 hours long but worth the listen. They are having another debate /conversation in June.

He had some really interesting other discussions with Sam Harris. Here he "roasts" Sam Harris, again on religion;



To me, Peterson doesn't seem to fully acknowledge or even understand Harris' position on rationality and morality. "The proposition that underlies western culture is that there is a transcendent morality (God). The ethic that drives our culture is predicated on the idea of God. You can't just take that idea away and expect the thing to remain intact mid air without any foundational support. You don't have to buy that......", is what Peterson says. I don't buy it. Ethics can remain or exist without the foundational support of a transcendence or God, he can't successfully argue that morality and ethics won't survive when you take religion (the foundational support) away. What he basically says is that before religion and before western societies, there were different, or no moral rules regarding murder, theft and such. We only have to look at 'primitive' cultures then, like in Papua New Guinea, who do not have organized religion, yet I bet they have their own value system to be able to live in a group of humans. It's difficult to prove his point, as most older cultures believed in one or multiple Gods, one way or another. But that doesn't mean that those who might have believed in nature and not in a god, didn't have rules in place that show morality. I think he is incorrect and that this morality system is belonging to humans regardless of religion, which is what that Sam Harris links to. Harris links them to rationality, but it might even be so that some values are inherently part of human psychology, even before times of rationality. It might have been the first things humans developed, in order to be able to successfully hunt and survive together. Strange of Peterson to assume that all such morality comes directly from religion. I don't think that without religion, we would be killing one another any more easily than we are now. Christianity never stopped the brutal oppression of the serfs or the conquests or war and did a fair bit of killing itself, so there is a major contradiction going on there. The question is, does religion create that or is it an attempt to heal it? That depends on the one wielding that ideological sword I suppose.

What Peterson basically says is a very reductive simplistic logic:
-western culture is based on the ethics of the Judas-christian religion.
-The Judao-christian religion is based on the belief of God.
-If you deny the existence of God you weaken that religion.
-If you weaken that religion you weaken our cultures adherence to the ethics that it supports.
-If you weaken those ethics you leave a void that is at risk of being filled with a less functional and humane political and cultural system.
-Science is important, but not at the expense of our cultural system.
-History shows that secular societies can remake cultures into some very inhuman political systems, (Stalin, Hitler, Mao Tse tung, Pol Pot, and on and on.)
-any belief system compatible with our survival must be true, and any that gets us killed must be false.
-"be very afraid of atheist, but embrace and support grown men who wear fish hats and talk directly to invisible genies.

Peterson often refers to Hume's philosophical 'is-ought' problem. The problem as described by Hume is that you cannot get from an 'is' to an 'ought.' Science can tell us how the world 'is' but it cannot tell us how it 'ought' to be, or how we should behave, and what we should value. Peterson then substitutes religion into the 'ought', as if that can tell us what to value. One can easily disagree with Hume's law. Sam Harris thinks it is flawed because if we have all the 'is' available in the world, if we learn everything that there 'is' to know, all the possibilities of good and bad experiences, how the mind works, all the kinds of mechanisms and consequences that would determine one decision over another, so all of the 'is' there is to be understood. If understanding all of that doesn't give you a complete picture of what you 'ought' to do then where would you go to get that picture? Besides, all the religious works are written by human beings too haha. Peterson has so much confirmation bias, that I wouldn't even call his approach scientific sometimes. He is a traditional christian believer who sees no other real possibilities for inner growth and ultimate biological satisfaction than through having children. Truth to me is that not having kids might be the harder path. You have to create your own worth and meaning and day to day action, which seems easy in your twenties, but becomes more difficult in your 30's and onwards. People with chronic illness struggle on a day to day level already anyway, to the point that people who do NOT have said health issues cannot even understand or are willing to acknowledge. His argument; "Don't chase happiness by forgoing kids because, you know, you could end up with cancer. And then what??"



Horoscope


Hehe I read an "Honest horoscope" for 2018, summing up the worst of every star sign. Just for fun I'll pick one some star signs randomly. I'm scorpio myself, so I will add that one too. It's all nonsense of course, but was a nice twist to the usual positive general horoscope texts, that can apply to every human being. It was all done in jest; every single star sign comes out like an utter twat. NO month is spared. I struggle with the practicality of it; I was born 3 weeks late, so I would have supposed to be a complete different star sign than what I turned out. Could it truly be that my personality altered radically in those 3 extra weeks in the womb?


Scorpio:
Jealous and Heartless. Yes, every star sign has shadow sides, but scorpio's beat them all. You already were jealous, revengeful, suspicious, heartless and narcissistic, but in 2018 you manage to stir all these nasty traits to new heights in 2018. It already starts in January, when you put depilatory cream in the mascara roll from your 'best friend', because you felt she was laughing a bit too warmly to your boyfriend. In March he himself is next, when you put him naked on the street, because he didn't wake right away when you stuck your tongue in his ear. And guess what? He even comes back in with apologies, paralyzed as he is by your secret scorpion poison; sex. You use it to get your way, always and everywhere. But be careful, in October your chances turn. You cannot continue to seduce that coworker with impunity. It's going to give trouble. Famous scorpio's: Ivanka Trump, Winona Ryder, Bill Gates and Marie Curie. Potential partner: poisonous snake


Aries:

The bad news first: you are a moody know-it-all with a short fuse. The good news: you aren't aware of it yourself, you are too busy with your "adventurous life", as you call it yourself. Even though those adventures mostly come down to speeding in your car with too much alcohol in your blood, and not too subtle flirting with hot chicks with a nose piercing/bat tattoo/too short a haircut. Contact with your friends is this year, with Mars in the 8th House, more difficult than ever. You might think that you're giving your friend a nice compliment when you tell her "You really are looking a lot less chubby than last week". And you also belief that everyone at a party loves your fanatical (yes, that's what fire signs are like) explanations of what a typical francesinha dish should actually be made of, and that everyone who thinks differently is a dirt nazi. Speaking of nazi's: Adolf Hitler was an Aries. Exactly, with a short fuse. Best chance for a relationship: someone with the star sign crowbar. Other famous Aries: Quentin Tarantino, Vincent van Gogh and Celine Dion


LEO:

Congratulations: you have the biggest ego of all the star signs, and that will prove itself in 2018 under Uranus and Venus more than ever. You're a fire sign after all; you are sexy and you know it, immersed as you are of your own radiating beauty. Women are drawn to you like ants to a honey pot. 'Good, I already thought so', you are thinking now, you are not surprised by this. It is your birth right, you think. Unfortunately, also this year there is no lasting love between all those escapades, because they soon find out about your shadow sides; you are vein, superficial, selfish , demanding and impatient. Maybe you should try not to laugh so hard about your own jokes when you have a serious date in July. Other famous Leo's are Fidel Castro, Kevin Spacey, Mick Jagger, Billy Bob Thornton and Bill Clinton. Star sign of your potential partner; lion tamer.


I'm ashamed to say that my horoscope was fairly accurate haha. Bit exaggerated of course, which was the fun of the whole thing, but not entirely besides the point regarding revenge, murder and spite. A female friend blatantly flirting with the man I'm with, will one way or another gets notified of my resentment. Usually by putting superglue in their mascara rolls haha. Jokes, jokes.
People tend to look for coincidences; your TV goes on and the TV cues up to a show on pollution, and you just know it’s your Uncle Frank telling you to join Greenpeace. Sometimes these little meanings we attach to things can be good, they give us some comfort. Some people get carried away with them, thinking everything is a sign…"my shoes laces came untied, that is a sign I need to go running"…"my coffee wasn’t hot enough…that is a sign I need to switch to tea, or else!". My mum can be very spiritual. Especially when she encounters what she considers unusual occurrences. So I always have to explain things like No, fire doesn't mean you have angered the Gods. So on the day of the anniversary of the passing of my sister, you can be sure that there's a much higher chance that some cloud will create a formation in the shape of her favorite rock band or something, or some bird will land on her balcony and peck out "Hi, it's me!" in Morse code. I love that she sees those things and gets solace from them, but I also know how willing people can dish up stories and embellish them with factor grandioso.


I also saw this great tv program  (if you like you can still watch it back online, most is spoken in English) this week about a tv presenter who travels to the ends of the world. People living in very unusual places, and this time she visited a rhino orphanage on a secret location in South Africa. A girl of 22 years was running it with 5 other volunteers and for 4 years already they took in baby rhino's who had been left abandoned in the wild, as their mothers were poached. After some years of hand raising them (they'd even sleep next to one each night, on a mattress, as the baby rhino's need that sort of attachment as in the wild they are 24/7 with their mum normally), they are let back in the wild again, in the safest nature reserves. It was a wonderful program as this girl was so dedicated to animals and had such a beautiful take on things, I thought. She also takes in other baby orphans, a zebra for instance, a goat, you name it. The bond she develops with them, she says, is so strong, and they trust and love you unconditionally. They see her as their mom. People on the other hand had broken her trust in the past and she preferred the symbiotics with the animals. Btw it is a dangerous job too as poachers are constantly trying to find the place for this rhino horn which is worth more than gold at the moment, the most valuable product in the world due to humanities absolutely insanity and dumbness (idiot blackies and chinks thinking it saves you from prostate cancer and all that, its just keratine, just like in your on nails). Other orphanages have been found and people have been murdered over it and the small rhino's taken in other parts of Africa, so she really is putting her life on the line too for what she sees as saving the rhino's. I'd have no problem guarding a bunch of rhino's or elephants with a kalashnikov and shooting down all the poachers I see.











December 22nd 2017


Nearly Christmas! That lovely time, where kids here are buried under presents, both with Sinterklaas ánd Christmas. Everything is festive now, and then in a few weeks time it will be January and people will be all depressed without knowing how and why. Although I know quite a few people who also get pretty depressed about and during Christmas time :) After weeks, months almost of eating as healthy as I can bring up (lots of vegetable+ sweet potatoe stir fries, salads and the odd fish and organic meat), I cannot wait to pig out on union soup, lamb shanks, fries, fried and crusty golden potatoe thingies from the oven, leak pie and lemon meringue cake. YUM. Have friends coming over and they luckily are used to me having a small fan on at the table and drinking iced water and for the house to not being very warm.

It was Black Saturday the other day, with overfull car parks and supermarkets, frantic people elbowing their way through the crowds. Long check lists but then in the end, you've got something. It's the commercial side I'm not mad about but what can you do.. In essence it's a great feast of lights in the darkness. I like to see it as a way to chase the ghosts and demons of winter, more than anything. If people did it for many centuries in the past, (Yule I think was also about this?) then it probably has significant psychological and symbolic meaning for us humans to create such a thing in the dark times of winter. Aside from the seasonal depression, I think Christmas is something that many people look forward to all year. Even I see it as a marking in December and a beacon of light before the long winter months start. For most people, Christmas is a nice holiday. An opportunity to meet up with people and eat a lot of very good food at the very least.
Then it is over. An entire year of looking forward to it, and it is gone. In Russia, Christmas is January 6th and Chinese new year is even later on, but the principle remains the same. Now we have to get back to our boring, every day lives. Then comes the long slog toward Spring. Valentine’s Day is an artificial holiday, it does give a wee boost but not a lot of it. Months of snow without Christmas to buoy it. Months of hibernation and it being a hassle to go outside. 

Past weeks have been ups and downs, some days my skin was really calm and I could go for long
walks or help some people out with handyman chores, but other days I was down and out with red burning skin. I developed another cold a month ago, after a long train travel, and that's a common thing every winter now it seems, as for the past couple of years now I've been down with flu every winter. Always turning into sinus infections and bronchitis. Never had that before the age of, say, 35 years old, it's only been the past three years really. (Skin pictures are at the end of this post).
So a day after the train journey, my throat started to feel sore. Then the nose became congested. No problems still, I wrapped a scarf around myself and gurgled with salt water. Tried not to blow my nose too hard, even though the wetness was literally dripping from it soon after. But with the sneezing, I could feel already within days the pressure building up in my sinuses. Not again, sigh... Fast forward, am 3 weeks further and still having thick mucus in nose and throat and sinuses still painful. I know it's another one again, as my upper molars hurt, the nerves hurt, especially when I bend over (pressure!) or jump up and down or put my feet down too hard. Last year I thought I had a tooth issue! Not the case, just pressure from these congested sinuses, it turned out. My rosacea is flaring from it too, just like last years; more red, more hot, more flushed and swollen. Oh well.. Over here they do not give antibiotics for a sinus infection, unless you have it for months and a swap proves it to be bacterial in nature and not a viral problem, so I'm resorting to snorting mildly salty water with xylitol and a sniff of baking powder, mixed in pre-boiled and cooled down water and let it run all through my nostrils, to the other nostril, or down my throat. Hope that helps speed the recovery up. It's getting a bit better the past days so hopefully on the mend. It's nothing serious, that's for sure. Just wondering what else I can do next winter to completely avoid this. Wear gloves in public transport, for starters, maybe wear a scarf for when people in seats around me have barking coughs and sneezes.. (picture taken on very good skin day).





Another very annoying issue I am having for at least 5 years by now, is that every darn winter I get what seems to be cold urticaria. Always on my face, always around the same areas of my cheeks, and they come up literally once the winter temperatures set in. They feel like raised welts, they can be small or really pretty big, raised hives almost and they take weeeeeks to go away again. The problem is that they are itching and feel very hot to the touch. And this heat (when you touch one with your finger, you literally feel the thing being pulsatingly hot), stirs up my rosacea flushing like nothing else. It's just so annoying by now. Summers are too hot for my skin, even the start of October was very warm and had me flushed just from being outside, and BAM, a month later I'm looking for balaclava masks online to protect my face from the cold :( I'm so annoyed by this, as winter used to be an opportunity to go out a lot for me. Protect my skin obviously, but apart from red cheeks and nose and chin, I never used to have these raised hot itchy things on my face. Doctor thinks it is related to my allergies and mast cell problems. Too many mast cells, or histamine being too easily triggered, hence me flushing beet red so very often. I am now taking some medications again (new experiment) for this issue:

Inorial, zaditin and pantoprazol. Together they are supposed to reduce the mast cell/histamine issue. Am also taking 10 mg of Xyzal antihistamine a day.


Below are some pictures of my recent boils and some pictures from last years winter. They would itch so bad, that I made crosses in them with my finger nails. Like we used to do with mosquito bites as a kid. I hope I can avoid those huge boils, I try to keep the temperature in the house and the bedroom around 16 degrees Celsius or more, not below (I use a fan a lot, so that makes the cold air feel even more arctic). Means having the heater on most of the day, unfortunately.

My cheeks last winter:
  


And now, so the start of the winter:







I found the perfect Christmas cat gift by the way <inject sarcasm>. It seems especially designed for my little Piotr, who has a bob tail and cannot even cover up if he wants to. I’m not sure if people actually buy these things, but it is uplifting to know that these inventions exist :) Made me laugh, this video




So it has been cold here, especially a few weeks ago. Positively arctic! Snow, ice. Airport madness over the weekend, with thousands of passengers stranded and on camping beds at the terminals, because so many flights were cancelled. And I read that quite a few schools in England decided to close as soon as the cold hit. Angry parents, having no baby sitters. It's strange, you'd assume schools as high up north and as cold as in England would have experience with cold winters and snow. Imagine if Siberia had school free with the first rush of snow and ice, they'd never finish school there. Perhaps it is the suing/court case culture that has blown over from the States, that makes them close, so that no kid breaks any bones in the school yard due to poorly de-iced tiles. The only time we got ice-free from school was when the snow was piled up 1,5 metres high and the school door didn't open anymore. I heard from a friend that in England, schools don't even let them kids play in the snow. nowadays. No snowball fights and all of that. Worried that some parent will sue them because their little one got hit in the eye. But that back in the days, English school children had to deal with rascals who'd put stones in the snowballs, and hit you in the eye, and the teachers would just tell you to wipe it with a bit of hand towel from the toilets. Oh the times, they are changing.


Just the other night, the moon was nowhere to be found (the night prior it had looked to be very close by from this part of the globe, very big and yellow) but the other night it was pitch black and clear skies, with only the stars shining. Always amazes me that we are looking back in time when watching them. Some might already have died out in reality, although reality and simultaneous times in space time are a tricky topic anyway. It was my sisters 13th year of passing, the 8th of December (she died if a missed appendicitis at age 22), and her boyfriend from back then posted a picture of a black sky with stars on social media. My mother called and said she and her husband (parents divorced, she remarried)  were awoken in the middle of the night by the TV in their bedroom switching on. A TV-program started playing, out of nowhere. And then half a minute later it switched off again. "All by itself!". They had checked if anyone had touched the remote somehow, unknowingly, and whether or not the thing had ended up in bed, but no. She gets great hope from that, that my sister is toying with her somehow on that symbolic day. There were also some LED-candles lit when they came back home later in the day, while both were certain that when they left the house, these things were switched off. I am never sure with my mother however, she does like wishful thinking. But the fact that her stoic partner confirmed the story is interesting.

I'm afraid death has no place in todays western society... people know it, like some latent lingering knowledge far away in the back of the brain. But we do not allow ourselves to really think about it. It's a shame.. We should I think, and throughout life use this realization to keep aware of what we want in life. Of what we want to achieve. Of keeping on track. Life has become so hedonistic almost, in the sense that only the Now counts, and everything has to be Fun. I think life shouldn't be all fun, that we need to bleed and work hard to achieve something, to use our talents. Everyone is good at at least something. Although just dedicating life to inner growth and gaining knowledge and somehow passing this on is good and great in itself (starting to sound very 'zen' now I'm afraid). Because all the things I set out to do, have mostly all become impossible for me to achieve. As I'm tied down, sitting behind a ventilator most of the day, cooling my skin, avoiding my skin to burn and flare uncontrollably. Finding new ways to fill your life with and to find meaning in can be very challenging. It helps me to have friends who are in the same boat.. To be able to chat or talk or email with some people who also have rosacea and also need to restrict their lifestyles, and who equally deal with misunderstanding or disinterest from some people around them. When others tell you to 'just' ignore the rosacea and go out and do whatever you want, they do not want to listen to my explainings of how I can't be in the sun, or the heat, or the cold wind, and how a burning hot face every single day (I have flare ups every day, despite all the lifestyle adaptations) just changes your perspective of what you want to 'achieve' in life. Man, I'm happy to get through the days some periods.

I have also been without internet or phone for a whole week, last week. Felt very strange, to have no phone connection nor way to connect to the internet for so (relatively) long. I don't have a smartphone, only want a laptop for those things, so there was also no way to go around it with my mobile phone. Something broke down in the cables, is all I understood about it. The telecom company responsible had promised every day since that they would come by to try to fix it. Probably an outside line that got damaged by the recent snow and rainfall. So the first day, I will admit, I was not proud of myself, as I got on edge over the lack of internet. I realized by the end of that day that I use it a lot more than I think I do, even while working. It's second nature almost to be able to google or look up anything that pops up in your head. Day 2 came and I started to see the benefit of this whole undisturbed daytime and no chance of procrastinating, and I worked super concentrated and rammed out two articles I had deadlines for. Third day I was asked to help someone with a chore our and about. Did that for a few hours (very cold but I wrapped up). Still no internet or phone when I got back, but they planned to do it on Wednesday. I did have my usual cold weather urticaria on my cheeks by now, which made me high strung. By now I had about 8 of them, spread over both cheeks. Most very small but one was getting very raised and angry. Anyway, of course Wednesday came and went, and more calls followed. The thing was postponed to Friday ("busy busy"). At 9:30 repairmen would come by. Waited till 11:30, then called the company again, nobody picked up. After a few hours of calling, they did pick up and said the men were still on their way and would be there by 5 pm. Nobody came round.

So all I could do all week was walking in the cold and rain to the back of the garden to pick up the weak and feeble neighbours wifi signal a few times a day. It felt by now like being stranded on a desert island. Oh the triggered anguish and anxiety of being isolated, cut off the net, it is almost unbearable by now. Millennial-levels of anxiety I can say. Jokes aside, it was frustrating, especially having no control over anything. Next working day, the thing was fixed again, I must add. I had just gotten in the hang of (non digital) book reading by then :)

I also watched some documentaries I had downloaded and saved already. I saw this interesting interview with native Americans who told how content their ancestors were with a very simple life. It's a recurrent theme; with western modernity can sometimes come social isolation, greed and sometimes even depression. Reports of Native American society dating from the sixteenth century describe it as a materially modest yet psychologically rewarding culture: communities were small, close -knit, egalitarian, religious, playful and a martial. The Indians were certainly "backward" in the commercial and financial sense: they lived on a diet of fruits and wild animals, slept in tepees and had few possessions. Year after year, they wore the same pelts and shoes. Even a chief might have won no more than a spear and a few extra shoes. But they were said to have an impressive level of contentment amid the simplicity. Of course, you wouldn't want to end up with an infected wound back then. Or pneumonia. Let's not romanticize things. But anyway, this show went on to state that within only a few decades of the arrival of the first Europeans, the status system of Native American society would be turned on its head through contact with the products of European technology and industry. What mattered was no longer an individual’s wisdom or understanding of the ways of nature, but his ownership of weapons, jewelry and whiskey. Indians now longed for silver earrings, copper and brass bracelets, tin finger rings, necklaces made of Venetian glass, ice chisels, guns, alcohol, kettles, beads, hoes and mirrors. Dylan Moran did a poignant comedy sketch about this, I'll add it below. I'm sure that European traders deliberately tried to make them interested in that stuff, the famous coloured beads, in order to motivate them to provide the animal pelts for the European market.
I reminded me of a talk I had some years ago with an eastern German older lady from Dresden, who told me that she was a history teacher back in the Soviet times, and that all they wanted was freedom. But when she had it, she longed back for the sense of community and companionship from Eastern Germany. Only goes to show there are not always tradition 'good' and 'bad' scenarios with neat division lines in life.





I can’t even imagine what it was like to live in a Native American village. Apparently, they had no police, they had no prisons. They had no need for them. They didn’t have poor people. They grew what they needed, nothing more. They never over-did it. At least, the more peaceful tribes. I’m sure there were some dickhead tribes as well that took a more invasion attitude, but they managed to make it work until ol’ pale-face showed up. More or less bought the island of Manhattan for a bunch of flipping beads. Although the article in that link states that Manhattan was bought by the Dutch for the equivalent of $24,-, (60 gilders for the Dutchies), there is some disagreement about how much that would be worth in todays money. The highest I read was just below one million current day dollars. Still a bargain, considering the price of a single house on Manhattan nowadays, let alone the entire island! Anf for some context: the purchase of Staten Island a few decades later has more surviving documentation, including the deed, which says the Dutch traded “10 boxes of shirts, 10 ells of red cloth, 30 pounds of powder, 30 pairs of socks, 2 pieces of duffel, some awls, 10 muskets, 30 kettles, 25 adzes, 10 bars of lead, 50 axes and some knives.” All of that, for a silly island?? Bargain ;)
Reading up about the Natives, it seems that for some, it nowadays is more like living in an occupied territory than anything else.


I saw a short program about a small town called Hinton, in the north-east of the United States (think it is in West-Virginia) and it used to be a transition railway station for the transportation of coal. But since the mines were closed (climate change), the population was reduced to only around 2000 inhabitants nowadays. Decay, people moving away, businesses moving away or simply seizing to exist, poverty, no jobs. People who have lived there ' longer than dirt', and have no means to leave. The railroad station had 700 workers in the 60's, but everyone lost their job. Half the population left in the past 2 decades and left houses behind that were bought up by landlords who do not invest into updoing it, but simply charge a lot of money to sublet it. There is still some coal passing the station but it's coal from West Virginia and Wyoming, going to Japan. Still mining, but machinery cut out many jobs, apparently.
In the past, the Hinton locals could run a large family off of dads income working as a railroad worker and mums income from being a school teacher, and they could send all their kids to collage, a few decades ago still. Have vacations. Not anymore. Back in the 70's, people earned as much working at the railroad as they did working in the local supermarket. Nowadays the local supermarket only hires people part time, for 10 or 12 years in a row mind you, and people make no more than 10, maybe 12 dollars an hour there. Shocking. In order to belong to the middle classes today, you'd have to work for at least 15 to 20 dollars a day before you are able to afford a car and a house and such. So a supermarket job used to earn someone a middle class existence back in the 70's, and now that same job makes you belong to the poor. Depressing. Mostly depressing that the government over the past decades hasn't ensured that minimum wages were higher by law, and would have to rise along with the higher costs of living these days. In Holland the state does that, sets a minimum wage. It's not much but more than this 10-12 dollar an hour for adult shop workers. The only people allowed to be paid that little are students (so part-time workers) below the age of 20.

I guess the coal mines are closed because natural gas makes them redundant. There is no purpose whatsoever to using coal as a fuel at this point. I read that most people in America do not make a thousand dollars a month after taxes. Then you take out rent, utilities, food, and all the other expenses which happen on a monthly basis, and most people are probably in the red rather than saving. It is a race to the bottom. The less you pay the workers, the more desperate they become. And with others lining p to take over your job, there isn't a whole lot of wiggle room to unite with unions if they even exist at this point, There is a secondary benefit of every dollar withheld from the employee going into the pockets of the shareholders, but that is off-set with government benefits to make it up. Which are the programs that have been steadily dismantled since Reagan, and likely will be slashed further now that Paul Ryan has gotten his dream 1.5 trillion dollar tax-cut on the wealthy and corporations. At some point in 2019 (never in an election year!) they’re probably going to wake up, realize they’ve ended up with an enormous deficit hole, and say “We’re spending too much! We need to slash Medicaid and Social Security!” Nevermind it was their tax-cuts that did this :(

People in the 80's had other things to deal with of course. They had the death of the post-war boom to confront. Growing up in the 80's, we came of age with the last gasps of societal optimism, hoping that the economic mobility developed by our grandparents hadn’t been completely euthanized by the baby boomers. How could we be anything but optimistic, given that we were told that we were living in an era of unrivaled prosperity? We could be anything we wished with effort! University was an option for every one of us. We may not have been wealthy, but working hard in school would bring rewards in the form of grants and scholarships, studies and jobs. We could work our way through university, like our parents did. We could be astronauts. We could be rock stars. We could be a police officer if we so desired. We just needed the effort. But unfortunately in these days and since the financial recession, this is no longer the case. Wished there was a more equal spreading of wealth and opportunities in the world. A sense of purpose for everyone. Give people that are finishing their mandatory educations a pathway to success. Give everyone a shot at an education and then make that effort worth something. Not the outlook now of busting our butt at university for a dead-end job. Instill a greater emphasis on respect and compassion. We place such emphasis on superiority now and there still is such class-based bias.

So anyway, what really got to me was that people from all over this West-Virginian region flocked
to this one spot in some field in the middle of nowhere in the state, where they could be seen for free for one weekend by a doctor or dentist, once every year. Regular dentists and doctors working for free. Missionaries in their own country, not even 7 hours driving from Washington. Thousands of people, some traveling all day, gathering there at the break of dawn. To be seen this one time a year by doctors. What sadness.. Yet they were all so friendly to the interviewer and so warmhearted. Not the self entitled bravado that you get here more often than not. People who cannot afford a visual and dental health insurance, so going without any such care for long times. Not even everyone could be seen in the space of that weekend. Some young people had to have all their teeth pulled, what a nightmare. One doctor running a mobile health clinic and driving to the remote parts of West-Virginia to see patients there for free. Amazing. One man said that he had full insurance while he was in the army and later working in the coal mines, but as soon as he stopped working, due to prostate cancer, he had nothing (!) to fall back on. No health insurance whatsoever. Tragic. People needing to choose between food or medicines.. People apparently dying from a simple pneumonia because they are afraid to go to the ER, where they will be charged $500 for a simple bladder infection test cup, $1000 for a simple X-ray and have to tick off $6000 at the end of this short ER stint. Hospitals are said to be the first to send bailiffs at your door too if you cannot pay. It's outrageous. So people who cannot afford it simply don't go to hospital, even when they need to get stuff treated. Dying of an appendicitis.. It happens here too but strictly because of a bad doctor. Not because people cannot afford going to hospital. In Europe it's different, you always have health insurance it's mandatory and it does cost some money these days (I pay 120 euro a month and have an own risk of 350 euro) but then you have everything covered, ER, chemo therapy, chronic health issues, all medication, also dental and eye doctors and all that.

I hope in time, somehow, health care will become more affordable in the US. It's always so sad to read on rosacea forums and in rosacea groups that some people struggle to even see a dermatologist because of the costs involved, let alone buy prescription medication. In such a rich country, that shouldn't be happening really.. In the Netherlands, politicians have stepped up recently to some big pharmaceutical companies, who refused to sell a rare medicine for the asking price. A high price, a reasonable price, which the government was willing to pay for it. But the price was driven up into the hundreds of thousands of euro's per patient, and deemed too high even for the Dutch government. Questions were asked in parliament as people were outraged that patients in Holland were dying from lack of treatment, whereas patients in France walk around happily while getting the med. Now the Government has decided that pharmacists are allowed to make the drug themselves and sell them against cost price. They will not be brought to justice if the pharmaceutical decide to protest and sue them, and are protected by the state for doing this. They are also looking into doing the same now with some other patented and outrageously priced drugs. I'm sure the reps and lobbyists are working overtime now to talk this thing into the ground.

I think they are called compound pharmacies. There is hardly any to no drug on earth made from unique or exotic ingredients. There is nothing that differentiates the paracetamol in Tylenol from the paracetamol in other such pain-relievers or drugs. A compound pharmacy takes the common ingredients and fabricates drugs to-order. We need more to keep the pharmaceutical giants in line. It's one thing to ask representative prices for medications, as these companies also do research, endless test phases for all sorts of drugs, of which some never make the market in the end. But the multi million (billion sometimes) profits that are now made in this industry do not warrant such outrageous cost prices. Companies like Galderma and Allergan are sure doing a lot, but most of its latest medications for rosacea were taken from other fields and reapplied for rosacea. Mirvaso (brimonidine) comes from an eye drop that has long been on the market and Rhofade (oxymetazoline) is originally used in nasal sprays, to help shrink the small blood vessels in your nose to reduce nose swelling. Oracea is simply lower dose doxcycline (loooong been on the market before it got re-branded). Soolantra is hailed now, and fairly effective for some rosacea cases, but its basic ingredient ivermectin has been used for at least a decade, if not longer, by people on different rosacea forums and communities. Anti mite and de-wormer paste for kettle, basically. All Galderma has done now to create Soolantra, is taking the ivermectin active ingredient, and putting it in a neutral skin cream, called Cetaphil. And throwing the price up, from a few dollars for the ivermectin, into now multiple HUNDREDS of dollars for the Soolantra cream. *I've got all these new creams in the house and read the information leaflets. It's sad really that Europeans get these products for very reasonable prices, even those who want to buy it in cash instead of using our mandatory and very affordable health care insurance for it. Yet in America (and probably in more countries I do not know about), people are charged no less than $500,- sometimes for the same cream. Outrageous, especially considering these drugs were not even invented by the companies involved. Sigh. I realize that people have different opinions on this topic (or on any other topic imaginable), but I can't help feeling pissed off about all this. Note that for facial flushing, nothing has been developed for decades now. Nothing that actually works, nothing new (Mirvaso to me is a liability of a product and made many users worse).


Ok, some pictures of good versus bad skin days. Sometimes I wake up all red and my skin calms down over the course of the day, sometimes it is the other way around and I get more red as the day goes by. But overall, in winter my skin is more red, much more puffy and swollen and more easily flushed than in warmer times of year.

 






I also read a topic on the Rosacea Forum, where people explain how laser or IPL treatments sometimes made a visible pale spot on their face, but strangely not all over their rosacea skin. This member wrote: "I have VBeam aka PDL to get rid of some broken veins on my face. It worked. [..] One of the blood vessels treated was on my cheek. When it healed, it left a perfect 1cm circle with normal skin tone showing through. I wanted that effect, but all over my face to correct the damage Mirvaso had done to my skin."
Someone else chimed in and wrote in reply: "I'm curious about the circle. I'v had v-beam (and excel v) 1-2 years ago. I've noticed something similar -- that there are a few "perfect circles" seemingly hole-punched by the laser .. In my case these spots will NEVER flush, even if my entire face is red/purple. I had asked my laser doc about them, and she said it was an area where the laser had good "success". But I'm wondering if (at least in my case) it's more a sign of damage .. More blood vessels seemed to crop up just outside the circle. Like in order to compensate for the circle where no flushing can happen anymore."

It's interesting to me to read, because the same happened to me. I had Lumenis One IPL treatments with Dr. Peter Crouch, in Swindon, back in 2005 and 2006 and I came back a few years later again. He tested all machines he had on my skin, all small test patches, and when this one made a clear pale area on my left cheek, we used the same settings for a full face treatment. The peculiar thing is, that while the test spot, the small spot, with these exact settings cleared up, as soon as we used the same settings on all of my cheeks, I had huge inflammation response and once this settled, there was no improvement and the test patch still stood out more pale. On my right cheek the same thing happened with a Pulsed Dye Laser test patch from dr. Crouch. In my case, he thought I am photosensitive and hyperreactive and that the only way forward would be for me to have small areas of skin treated at a time. But since these were charged the same price as a full face treatment, I couldn't afford it and put it on the long lane, the to do list for the future. Unfortunately and tragically, Dr. Crouch passed away recently. I'm not sure if I should start with small areas of IPL or laser again. Both my dermatologists think I have the wrong skintype and the wrong symptoms for it (hyperreactive skin and blood vessels, a flushing problem, more so than a permanent redness or isible blood vessel-issue).. I am still unsure :( I want to improve my skin and life so badly, but had pretty much nothing but misery from IPL. Anyway.  It's difficult to see in these pictures ( in 'real life' these pale spots are easy to see, even by others), but I tried to mark them.










October 30th 2017

So I woke up red and flushed (I think from using too much fluoride tooth paste last night, it always makes me so flushed for a day..) and I want to cool my face. But it's 16 degrees here (61 fahrenheit). I switch my aircon on ... and it does nothing. That is; it fans air, but the motor doesn't switch on to make the air colder. I wondered why all airconditionings go no lower than 16 degrees Celsius? I need some colder air now, for a little bit, to get this flush down. Only ten minutes of 14 degrees on my face is all I ask for. Why is this not an option? My machine is powerful and can surely go a bit lower than the current temperature, if it can bring 30 degrees down to 20? This is one of the online explanations as to why we can't make it colder:

"It's not a technical limitation, if it's a must we can built a machine which can bring down temperature down to 0°C, but that's not the point here, after all we are not looking for a cold storage, right?? The purposes of Air-Conditioner is to provide a comfortable temperature for the occupants, & definitely not an unbearable temperature for the occupants..!
16°C temperature is already too low temperature for a humans wearing normal cloths. For infants and people wearing loose cotton cloths this would create problems..!
22-24°C and 50% relative humidity is the most comfortable temperature for humans(Will change depending up on clothing, genter, age air movement etc).

More over reducing the temperate below 16°C will require lot of power consumption. The size of the compressor itself should be big enough to do the additional work. Also too low temperature will reduce the humidity inside the room, [you might have seen water droplets coming out of Air-Conditioner]. If temperature settings are too low, lot of such water vapours will be removed from the room which will make our skin dry..!
So set the temperature of Air-Conditionioner to around 22–24°C & it's best temperature for human body."


"American society of Heating, Refrigeration and Air conditioning Engineers did a survey on the basis of the Comfort levels of various people for both winter and summer conditions and finally developed a Comfort Zone. Following is the Comfort chart. The low temperature is set by the characteristics of the refrigerant used and the inversion of the Joule-Thomson effect from cooling to heating. The J-T equations is:
This equation works to cool by reducing the pressure through an expansion valve. However, it only works in a narrow critical pressure-critical temperature range to cool and above or below that narrow range you get heating on the refrigerant expansion. The range of proper operation can be calculated by what is known as the Miller equation, not reproduced herein."

Back to the cold gel packs from the freezer then! Careful with those though, anyone reading, because they can damage your skin when used too long or too cold.  I only use them when having a deep painful hot flush, and only for a short time, say, 5 minutes in total alternating the left and the right cheek. Then just a fan on, and repeat the cold packs if needed a bit later. That cools and calms my skin right down usually to the point where it gets a more normal skin colour again and stays calm for the rest of the morning and often also the afternoon (also thanks to my anti flushing medication). I suppose very low air conditioning air can damage skin too, thinking about it..

I also received my first birthday card (birthday on halloween, 38!). Fitting haha, glad it's not only the woman who seems to have rosacea 😆 And pancakes with the men (gluten free ones made with rice milk for me).




I am also watching back old episodes of The Amazing Race, when I have a spare hour or two (currently season 13), and despite my friend and I thinking that we'd make the best Team ever on that competition, it's giving me the chuckles now and then when seeing the sort of challenges the teams have to compete for: being bombarded with dyed powders in festivities in India (noooooo my poor rosaceaaaa!!), crushing very hot red peppers, which gave even the healthy contestants red faces and burning skin and eyes. Or drinking dozens of cups of tea, trying to find the right flavour (oh nooo, the caffeine! The tannins!). Going off the highest wild water sledge in the Middle east (don't let my head go under water at the end, I don't tolerate the chloride water on my skin). Spray painting a tuk tuk scooter. And the list goes on haha. I don't think Phil would give exemptions based on health issues.



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