25 percent chance

Today what I though about was... I'm the third child in my family. In order to get Nethertonsyndrome, both parents have to have the carriers. The parents usually wouldn't know that they have the gene because it is so rare and it's a recessive gene. Because it's a recessive gene, when both parents have it, there is only a 25 percent chance of getting it. So the good news for me is that if I marry a man without the recessive gene then my children will not have it. And the chances of that are pretty high. I know a girl with Nethertons who had a baby without Nethertons, so that gave me hope.

But what I really wanted to say is.. I've been thinking about my mom's situation. I was the third child and I had Nethertons. Doctors didn't know what was wrong with me. They just said I had sensitive skin. But I obviously had problems. I was super super red and had several allergies. I had to be fed with a tube through my nose and drank a lot more than the average baby. Then my mom had another child 18 months after me and that child too had Nethertons and was submitted into a hospital right away and my poor mom didn't even get to be with her baby for several days. That is I think when we were diagnosed with it. I can imagine it would have been hard to make a decision to have more children after two in a row. But I'm grateful she had six more (and the were none of them had it). I'm grateful for my life and for all of the rest of my siblings. It's worth it.

What to say when people don't have tact?

So, I've been living at home for about a month again now. I went to church today and a lady I have known since my childhood came up and asked me.... "So, tell me has your skin gotten worse since you've come back here...?"

So in reality I just told her the truth and tried to explain that it just goes in cycles... and I don't know what affects it... what I eat, the weather... I don't have a real clue. ( I wasn't too offended today because i was having a good day.. but on a bad day it would have really hurt my feelings)

But that's not what I want to talk about... I got thinking later... Why do people I've grown up with still think it's necessary to bring up the topic? Really how long have they known me?

So something I might try next time someone asks me or tries to make me aware of the condition of my own skin is..... to look around confused... "What my skin?" And then to have my eyes catch my hands and scream in shock... "ahhhh!!!! my skin!!!!!!!!! I'll have to go to the doctor first thing tomorrow!!!!!! Thanks for letting me know!" (and just walk away!)

Those legs....

So, this is the joy for me of when the legs break out. And unfortunately my arms and hands are broken out too. But sometimes it's just the legs and I wear long pants. That's usually when someone will come up to me and will say... "wow your skin is just looking so much better" and some even try to reason in their head why.... like I must have eaten differently or something. Of course it has to be my fault.... but what they don't know when they make these assumptions is that under those long pants I'm wearing I'm really hurting. Well it doesn't always hurt..... just while it's breaking out, dry, after I cream it, sometimes after or while I take a shower or while I'm walking (when it gets between the back of the knees). But once I put on the cream and let it sting really badly for a few minutes it usually gets better. Well the good thing is...most people do not get to pick at their skin as much as I do. In some weird way it's kind of fun when you can just pull off some without it hurting because it's already coming off anyway. But if  you are a parent and your kids have it I would not recommend that because the skin has to be ready for it. I've learned that that layer in the inside (nethertons often has two layers that's coming off as you can see on my picture) well just leave that layer. It'll come off when it's ready, if you don't wait it can be painful or bleed.

When the hands break out

So, I just moved from a more dry place to a more humid place. I live in the country now with lots of blooming stuff and it seems my skin does not do so well here. I don't like it when my hands break out like this on the fingers and knuckles especially. But at least my palms are not super broken our right now. I guess what makes it hard when the hands break out like this is because everyone can see it. Sometimes people will reach to shake my hand, like yesterday... and I hesitantly went for it and later regretted it, because it hurt me.... You know people like to give that reaffirming confident squeeze, well sometimes I would rather just pretend I really like hugs and say "hey" with a big smile and stretch out my arms" But then again... that's just not me. In the past I have just put out my fist instead though.. :) the kind you just want someone to bump a little, but pull it out before they actually do. It may be awkward... but you still get out of the situation.