Treatments and never ending meds

When I was a newborn, I started having issues with my skin the moment my mother gave me milk. I couldn't drink milk, so my parents gave me soyamilk instead. I cried a lot as a baby, because my skin was torn open all the time. My nanny would tell me she couldn't bare to watch when she took me bathing, because I would scream like someone tortured me. She must've had a hard time taking care of me, I love her with all my heart for every effort she has put to care for me and my skin.

I started going to school for the first time. I didn't speak any Dutch yet, only Cantonese. I was never popular and always the easy victim for bullies. A small cute asian girl... yes, let's pick her. Even at that age. Kids would tell me how my skin is rotten. That I look like a witch. I never liked school and never had many friends. There was one sweet boy, that always asked me how my hands were doing from time to time. I'm still good buddies with him now, love you Mickey :) I couldn't go to the swimming classes that were required (in The Netherlands it is really common for everyone to be able to swim). No fun for me. As a kid, it really sucks seeing everyone so hyped about a certain thing, but you know you can't be a part of.
There were also these crazy summer days when everyone had to strip naked and the teacher would spray them with a fire hose outside the playground (Who the fucks does that? It's creepy and cringey, even if I look back at it now). I remember clearly that I told my teacher I couldn't and that I felt really embarrassed. She scolded me and said I shouldn't be such a pussy. Against my will I still went.... But stayed out of the water for most of the time. All the kids were having fun while I was busy avoiding the water. And covering my girl-parts.

When I was around 11, my skin condition got so bad that I couldn't go to school for 3 months. My body was wrapped in band aids and every time taking a shower was hell. Because I had a lot of wounds, the aid stuck because of the pus on my skin and it hurted a lot to remove them when I had to take a shower. Everything hurted with the slightest movement. I cried almost everyday. When I returned to school, girls would say to me that no guy would ever want to hold my hands, because they feel like sandpaper. I was devastated. I was finally cheered up a bit about the fact that I could go to school again...but the bullying never stopped.

My father cared a lot for me in that period. Together, we went to many different hospitals in Holland consistently. I was never scared of the doctor, because all I wanted was just to be normal. They tested me with all kinds of different and creepy shit. One time, they even cut off a piece of my feet for further inspection. Nothing came out of it. The only thing I still remember was the look on my mother's face when I came out of the surgery room. She was really concerned, but I didn't feel anything. All the hospital visits made me kind of numb and on my mind I just hoped they would find something.
Though I never liked the doctor. There are all kinds of eczema, but my kind seems to be occuring 4% of all adults. (Maybe I AM an unicorn? or rather a snake). Because my skin condition is that rare, everytime I go there I feel like I'm being watched like a monkey. Five or six interns or doctors will surround me while I had to strip away my clothes. At that age, I was doubtlessly ashamed. But I have no other choice, so everytime I obey and hope it'll be over soon.
One time I had to do a crazy test again. The doctor cut my skin with a small needle-like knife without any anesthesia. He made 10 cuts in total from my wrist to my arm. Kids at school would think I tried to be emo and cut myself to ask for attention.

As time went by, I changed from a happy lively girl into a downer. I never sang or dance anymore. I barely speak to people and only found joy in my computer games. My extraverted me turned into a shut off loner. I didn't wanted to see or speak to anyone. Video games and my computer could take my mind off for awhile. I started playing day and night and made many friends online.

My dad never stopped caring for me. He did a lot of research on his own and read books and went online searching for solutions. Things we tried: putting sesam oil on my skin. Even now I'm still a bit traumatized by it. If I eat food and taste sesam oil I get a weird feeling of abomination. Pretty sure it's because I associate the smell with my disease.
We tried weird chinese medicines. All kinds of pills, cremes, and herbs. The herbs were extremely acrid. The first few times were the worse. I nearly threw up. After a couple of times I got use to it and drank it like a champ. The chinese doctor also gave me small packages of herbs that I had to bath with water. We tried bathing in ice. I put ice cubes all over my body for months to see if the itching would reduce. It was painful, especially in the winter. But nothing could top the fish liver oil I had to swallow everyday. With all my knowledge in different kinds of food, I can tell you, that is probably the most traumatizing food and the most nasty ever. Then there was more hospital visits......but guess what. Nothing fucking ever helps. Slowly I tried not to give a fuck anymore and just wanted to live my life the way I wanted to live. I ate everything I wanted, did everything I wanted. But it wasn't easy and my skin didn't allow me to. I had to stop that lifestyle. My skin quickly forced me to become an adult by mind at a young age. My mother often tried to cheer me up by saying that I'd probably go away by itself. Probably around my 16's. Every year when I get my birthday pie I have the same wish: please, I want to get better, pleeeeaase.

When I finally hit the age of 16, I was really depressed. Mom told me that it would go away right? Why wouldn't it? I lived up so much to her words, that I brought myself to a very low point. I thought, maybe if I turn 18, it'll still eventually go away. With more patience, I waited. Still nothing happened and the condition went from bad to bad +1.
The itches were so bad that I often couldn't concentrate on class anymore. My grades went all the way down and in the end I had to switch school in another city. I was more depressed. I thought I disappointed my parents, which gave me guilt feelings. At my new school I had even less friends.The same group of girls always bullied me. They will say that I always scratch my vagina and laugh. I had eczema on my upper leg, so it was naturally that I scratched there. I don't know if they paid enough attention in biology class or not, but there is not where the vagina is, bitches. I didn't say anything for a year.... Until one day. I woke up and told myself that if today they decide to mess with me, I'll hit the shit out of those girls. Too bad for them they did, so I had to keep my promise and smack them. I got suspended from school. Worth it. After that time they never said anything about me anymore. Girls always treated me like shit and were mean for no reason. Slowly I became to realization that boys were much nicer and easier, so I tended to hang out more with boys.

Aaand.. Puberty.. Fun times. I found myself uglier than a mud fence. Each and every day I was convinced that I was very ugly. I hated myself when I looked into the mirror. I call myself a monster. In summer, I always had to wear long socks and sleeves to hide my legs and feet. While I was jealously looking at how pretty other girls were. I often fantasized how amazing it would be to walk in a skirt and sandals without any ugly spot on my skin and just go swimming with friends. I imagined how carefree it would be to just go outside without tights or worrying that someone would notice and make fun of me. I daydreamed way too often about these things that people take for absolute granted. The crazy idea is that I'd really love to know how it feels to have normal skin. To touch with normal skin. It's super fucking weird that I've never experienced that. Of course I did go to the beach, but no one ever knows how much of a struggle that is for me. The sand goes into my wounds and when I go into the water my skin would get so red, that it look burned. The sand would then stick to my wounds once my skin got wet and tada! New eczema spots and more pain and itches! Same for swimming pools. No way I would be able to go in there without greasing myself with 10kg's of Vaseline. When I do go, I would tell myself to man up and just go with it. And the pokerface always helps.

When I turned 19 I still wished for my eczema to go away. Another year. Another birthday cake and another useless wish. I've always wanted to be a hairstylist. I did good at the salon academy, but unfortunately I had to quit after my first year, because my hands were no longer presentable. I couldn't wash my customers hair anymore.
So I decided to do something that doesn't require my hands. I got into accounting. Still I was depressed and made a deal with my teacher to only attend for exams. For almost 3 years straight I've not gone to college and just played video games all day. Didn't had any friends. The only days I was at school was to take exams and talk to the teacher. Surprisingly I passed everything with a good grade.
I didn't got bullied anymore, because I stopped caring anymore. My poker face is so strong, bullies don't have fun to make me their victim anymore. I finished my years at school and started doing game development. I suddenly got really popular. I think it's because I'm a female gamer and 95% of the university were guys. They would call me a rare Pokémon or an unicorn. In my mind I was approving, because I'm unlike everyone else there which makes me a fucking monster. I couldn't get use to it and everytime someone called me pretty, I couldn't believe it. Because I don't. I believe, if they really saw me. Me, in a pure state, they'd be disgusted. Everyone would. I had a relatively low-selfesteem. I did fit in really good, but I was still a misfit, because I was different again.

The guy I dated back then didn't help either. He often said that it's because I just paid too much attention to my disease, and that's why I suffer from it. You suffer from something if you are reminded by it everyday through pain and itch right?! His advice for me was to just use soap, perfume and everything the doctor tells me explicitly NOT to use. And to just ignore it like you don't have it. The argument he gave was, because it worked for him. . He was a chef, so he got "work" eczema, which can go away quickly if you put some creme on it and let your workers do the dishes. That is a total different eczema than mine. But I guess trying to explain something to someone that is uneducated is really a waste of your time. The guy then abused me with his narcistic devilish soul and tormented me for years. He did his part good, picking someone with such a low selfesteem such as myself. I was a very good victim for all his tricks and manipulative bullshit. The psycho guy was really bad for my skin, because I was invariably in stress.

To keep myself busy and to be independent I needed to work. I started working when I was 13. I've had part time jobs that required washing dishes. I asked my colleagues nicely to see if they wanted to compromis. To see if they can wash so I could do something like throwing out carbage or money counting. But those bitches always looked at me as if I was making it up. Even when I showed them my hands they were skeptical and thought I was lazy and not willing to do it. I found out when my boss told me they back-stabbed me. He told me because he took a liking to me. Big cringe.

Now, almost turning 30 and still struggling with my skin everyday. I got realistic (or negative) and also dropped all the wishing on my birthdaycake. I spoiled the wish it anyway now by posting it. I've lost all hopes in healing, but I'm willing to try one more thing: going on a hardcore diet and cut off all sugar. In order to live I have to give up a part of my life.... Because I do really love food. I never pay attention to what I eat, because not many things make me happy. Food does. I hardly take showers anymore. If I do, I never shower more than 2 minutes. I really wouldn't know how it feels like to take a long warm shower without having to worry your skin falls off. I can't do dishes without gloves. I can't prepare food or cut fruit without gloves. I can't wash my hair without gloves. I can't wear certain clothes. My face is so dry, that when I apply foundation, I became a snakelady. You see pieces of skin falling off by itself. It is frustrated, because it takes me much longer to apply make-up. But I'm just lazy, but still want to be pretty at the same time. If I didn't had eczema, probably will just go out without any make-up and still be pretty. Yes, I also often wonder how I'd look with a normal healthy skin. That is my ultimate dream. (btw, the girls were wrong. Many guys were willingly to hold my hands, HA!). I can't attend pool parties. I can't touch rain. I even thought of moving to another country, because it rains a lot in Holland. Ok, I can, but it itches like a motherfucker. I can't carry heavy weight, because my hands are so dry and thin, the moment I put pressure on it, it just breaks or becomes very dry. I can't do poledancing. I tried poledancing for 5 months, but my hands slip everytime because I can't get a good grip. I can't do kickboxing. As soon as I hit something hard, I get bruises and wounds. I can't play airsoft. I can't really wear black, because I always leave a trail of myself behind. I'm like a walking snowy mountain. I'm not victimizing or pitying myself, just telling you REALITY. One funny thing is that my fingerprints are never accurate. They change faster than a boy's heart. So I can't use verification logins on computers or phones. That was also the reason they thought I was a fake when I enter a different country, because my fingerprints don't ever match. It was the first time I found out about this fingerprint thingy and I was just as surprised as the security misters. Does that mean I can kill people without them ever finding my prints? Nah. I'll still leave my trails of skin behind. But what I'm trying to say, I'm basically kinda disabled and people don't take me fucking serious? I feel being fucked over by the government aswell, because none of the natural products or the expensive gloves are covered by the insurance. But hey, I probably have to buy those things for a lifetime no? But wait, I can't apply anymore coistoride cremes (highly concentrated cremes with strong hormones), because my skin became thin as paper and you can see my veins run through it. It's creepy and ugly at the same time and I wonder If I'll still have skin left when I hit 80. Or even when I hit 50. So why the fuck don't they just give me some insurance coverage for all the expensive shit I have to buy for my skin? I wouldn't be buying them If I wasn't sick right?

There are so many questions still unanswered. I wonder if I never got fat, because I repeatedly make the same movements for the past 25 years.... Scratching scratching scratching. It's infinite and it never ends and I'm so sick, tired and desperate at this moment that I'd probably do anything to make it go away. Stress makes it worse, but eczema gives me stress, so it's an infinite loop and I've really no clue of what to do next. Cryotherapy? Lighttherapy? Dieet? Pills?

On the other note. I'll go to the hospital again soon to have a major research that'll probably take years. I can't afford to give up now, because If I do, it'll mean I gave up completely on life. People often ask if I'm used to it or not. No, of course not. Can you get use to pain?? or itch? Yes, I accepted it as a part of me, but doesn't mean I am used to it. Not even after 25 years. I also want to be healthy, carefree and pretty. I'd want to look for other alternatives and maybe even travel aboard to find doctors who can cure this disease of mine. Therefore, I might need a lot of money........
I'm ready to battle and the plus side: it made me stronger than ever.


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Coole Kees 
Purmerend, NL
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