In the elevator

So, yesterday I was standing in the elevator waiting to go up to the 12th floor. A young man got in as well. I noticed he was looking at me, but just tried to ignore it and looked down. Then he commented... "looks like you got some sun". Then I just looked up shortly and said: "Yeah" (even though it wasn't really the problem.... I mean sure I was in the sun... for like 5 minutes, but I know that's not what he was referring to, but thought it would be a good conversation ender.) Then he commented "sunblock". Then I just looked at him again and said "It's a genetic skin disorder".. hoping he would just let it be now. His response: "I'm sorry". I thought that was nice enough. Then a few seconds later he said: "Well, your still beautiful". ...."I wish you would say the same thing about me" and then winked and left the elevator. I have to say that was probably the best way someone has saved themselves. I of course was a little flattered, but more impressed by his reaction. Most people let their curiosity take over and are eager to fulfill it. The next question after i say I have a genetic skin disorder is: "What's it called?" Then I say: "Netherton Syndrom" Then they say "What?" or "Say it again?" or "never heard of it before".... then of course they want you to keep going and tell them what it means.......

But this guy... he cared more about my feelings than his own curiosity. Or he really did think I was cute and didn't care about the rest... which is of course cool too.  :)

So what's the problem?

So, It's a been a while since I've written on here. Part of it was probably me just not wanting to focus on it. Perhaps I should write about other things too then.... but I have had some big experiences lately. I had moved to a village in Germany where my skin for the most part was just not nearly as nice as it was         on the west coast of the U.S.A.  For so long I tried to figure out the problem.... like analyzing my diet. Trying to figure out all of my food allergies... (I already know them) but was trying to figure out is something had changed etc.... Oh, I forgot to mention a key factor. I used to use a cream called "duradermal" in Germany for over 20 years. For having Nethertons I really looked pretty good for except for the seeming circulatory outbreaks on hands, and legs... feet... but my face looked pretty good. Well, my biggest nightmare actually came to pass and they from one day to the next stopped allowing that creme to be sold because apparently other people reacted to it. I tried to figure out what happened to them and all I found out, it that it didn't cure the symptoms for some people.... Well, it wasn't something that cured me either, but it gave my skin the right consistency of fat and water...etc which is SOOO hard for me to fine in cremes.

So, me and my desperate self tried LOTS of different cremes recommended by dermatologists and friends. Nothing worked as well, in fact for most of them it made my face really red after a while. My sister recommended I use Nivea face creme. I still use it and it's not the best, but I can't find anything better that fits my needs.

I did go to a skin clinic in Erlangen Germany where they did tests... they also gave me a basic fat creme. My mom warned me about cremes that consists of a LOT of fat (some if necessary). When I was little they made me very very red.
I went along with it thinking they would have some idea.... And I have to admit in the hospital my skin did start looking a lot better.... but I could tell the fat creme was making my face a little red, but then I just thought that maybe I wouldn't put as much on my face.

When I got home using the same cremes they gave me. I broke out horribly!!!! It started the day I got home and just got really really bad. It hurt to move, to get up in the morning, to walk... Eventually my face also started breaking out on my cheeks, chin, around my lips... even my nose. I was so embarrassed to see my friends and people I know. I know they would think it's gotten bad... etc... I didn't want to think about it, but it was so unavoidably obvious. I didn't know if I could handle the comments from people... etc. Here I was actually trying to get help which I had purposely avoided for so many years. And it just made it so bad. And the doctors will never know. As far as they are concerned they think they cured me. I kept using the creme for a while since I thought I looked pretty good at the hospital. I was hoping the creme they gave me would still be the answer until one day ( about two weeks after I got home ) I had taken a brake from the creme because I ran out. Then I got more from the pharmacy and creamed my whole body in it and it got really really bad.. it was all a red rash and hurt like crazy. At first it just itched then it broke out. The next day it kind of got dry so I creamed myself again and it got all red and painful again. Then I finally got it..... it was the creme. I stopped using it completely and just used the Nivea creme so I wouldn't dry out. It got much better within days. But my face was still struggling. It would look somewhat OK in the morning and by noon the skin was just ready to peel off wether I did it myself or not... then I would have to peel it because otherwise white peaces would just be hanging there Then the new exposed skin was just super super red. It was awful and I didn't know if it would ever get better again. It hadn't been that bad since I was a little little girl. I had to learn to just accept my body the way it is and still try to find myself beautiful. Thank goodness I have friends and family that love me no matter what I look like. People that can see the real me.

So I moved the the east cost and within a week my face looked better. I still have rashes and stuff on my arms and legs and stomach and I am sure I still still get cycles of break outs on hands etc... but I am so grateful that my face looks better at least for now.

So to my conclusion. I have NEVER noticed my diet affecting my skin. That's just how it is... people can say what they want... I've never noticed any correlation between the two. I have food allergies and they affect my breathing... etc... swelling up... but not skin break outs.

I am not saying it's impossible, but that I just don't believe it anymore... no proof!

What does affect it is my environment. When I change environments my skin problems change. Sometimes it adjusts OK after a while.

The reason I think I looked better in the hospital was because of a sterile environment. But who can live like that?

I did find out I have a lot of contact allergies... so I am sure that has to do with it too.
But some things are just unavoidable so as for now I am just happy with my life the way it is.

A sad story with a good ending

So.... here's a little story. It actually happened last year, but at the time I was too down to write about it.
I moved to Germany (which I believe I have mentioned before that it made my skin a lot worse compared to the western united States where it's dry, crazy I know).
Anyway... I was looking for a little job. I actually graduated in Illustration. But I thought to myself I would just get a little part time job so I could stay and try to illustrate on the side because it is difficult to just get an illustration ob. Most work independantly. Well.... I applied at this drug store on the floor where they sell CD's. I thought perhaps I could do that. I was introduced to the store manager... who saw my condition and didn't hesitate to ask if I had exhema. I said yes, because I didn't really want to get into the whole thing and plus it's none of her buisnes anyway. Well she looked at me and straight out told me she wouldn't hire me because of my condition. This, as you could perhaps imagine really hurt. I pulled myself together while I was talking to her, but when my mom asked me how it went I kind of lost it and just started crying. Thank goodness this was my first time of that happening to me so directly and I had had several other jobs before. But I was discouraged none the less. But my sister and the drive of the holy spirit got me to get right up and apply again. But this time for something I really wanted to do. I applied the same day or perhaps the next for a job as a graphic designer even thought I didn't know if I was qualified for it. I got an interview the next day and to my complete surprise they needed an illustarator... my dream job! I've had it for a year now and all my co workers and boss are very understanding of my condition. I unfortunetly leave dry skin everywhere I go. I can't help it. But no one complains to me about it. Perhaps among themselves I don't know... but like I said. Nothing I can do.

Mysteries unfolded

So, I have to admit I took quite a break from writing on here. For the most part it was because I don't like to think too much about the condition. But then those times come where I wonder if others could perhaps help out with solving some of my mysteries. What I mean is sometimes there are some health problems and I wonder: "Is this because of my condition?" or is it something else. The reason I wonder is for example... I just discovered last summer after years of having this that I had foot fungus... gross I know. But the sad thing is I didn't realize because my skin is always peeling, so how should I know? Well, thank goodness that was figured out. Another example: I seem to get more cold than other people and I got head exhaustion much quicker than others too. Well, I read up on it one day and it said that people that have this condition, get cold easier and need it a bit warmer than room temperature, especially for children ( I remember that being difficult always having to go out in cold weather during recess). We are also more likely to get heat exhaustion much much quicker because the skin is what regulates our body temperature and when it's not in tact it doesn't work as well. Well,  have many more examples and many more I would like to figure out... My question would be to anyone who has the condition or has kids with it is.... I seem to get constipated more than I would like to and diarreah. I've been having a really hard time just digesting food normally. My stomach doesn't feel good after I eat and I also get bloated. I have a lot of food allergies, so it may have to do with that. Any ideas? The weird thing is just that it's been like this off and on for 9 months, ever since I moved.

better and worse

So, this is why I don't like it when people judge my skin condition... like "it's gotten worse" or "it's gotten better". It just goes back and forth. It gets worse. It get's better. What I eat doesn't make a difference. It seems to just go in cycles. I've had it for 26 years and I still haven't figures it out yet and it surprises me when others that don't have it think they have. Best is just not to worry about it too much and look forward to the good times and enjoy them when they're there.