Tuesday, October 30, 2012

Day 173: Keep Calm and Itch On!

On Wednesday, I cleaned my house for about an hour or so which made me (want to) sweat. But since I can't sweat, my skin burned instead.

On Thursday, I sat outside during lunch because it was a ridiculously beautiful day for October in Ohio. I rolled up my sweater's sleeves to give the sun a try. I wasn't in direct sun (was under a table umbrella for the most part) and I wasn't out too long. I didn't experience any burning or anything like that.

On Friday 10/26 I started having a little flare, which of course has turned into a bigger flare. I'm SO itchy! I want to blame it on either not being able to sweat or getting some sun, but the truth is: who knows?? Maybe it's one of those two things but who knows? Maybe it's because I took my vitamin or maybe it's because another day I didn't. Maybe it's because I had a cookie. Maybe it was because last week also happened to be That Time of the Month. Maybe it was because I didn't drink enough water. Maybe it's because...

Well, I could go on and on and on, but honestly, I have no idea why I started flaring again. Maybe that little bit of sun got me, maybe not. Maybe my body was just ready for its next (torturous) flare.

It's really hard to stop searching for a correlation. The truth is, there is no correlation. This just happens. And eventually it will stop happening for a bit. Then it will happen again. I don't have any control over it. All I can do is remind myself that it will go away and try not to scratch.

(Lately I haven't been too successful at the latter. But the former, I believe 100%!)

Monday, October 22, 2012

Day 165: Hanging in There!

I am 5 months and 12 days off steroids. Overall, I am better than I was last month but my skin is still not good. Red, flaky, uggggly. I am starting to get some white patches on my red-skinned stomach, so I think that's a good sign. I haven't really needed benadryl or atarax to keep me asleep for the past couple of weeks. My itchiness is less intense than in the beginning. This past weekend, I was the itchiest I've been in a while but it was still much less itchy than month 2. Yesterday I also got a bunch of tiny little blisters on my ring finger, which (of course) are gone today. It's just so weird!

I'm still using my "homemade" petroleum jelly. I use oil (I think I like the olive better than castor), a little beeswax, Vitamin E oil, and calendula oil. It doesn't make lovely lotion like what normal people get to use, the kind that's creamy and sinks right in and smells delicious and leaves your skin soft without being greasy, but maybe someday I'll be able to use that nice kind again.

Recently there have seen very compelling (as in "Not able to be refuted; inspiring conviction") before-and-after shots of several TSW patients in the Facebook group and Google group. It's very motivating and I can't wait to have my own before-and-after shots. I plan to mail them to the dermatologist I saw a couple weeks ago, along with the articles on ITSAN about TSW. Of course, a dermatologist who has been trained that TS is the first line of defense and the only treatment for "lifelong incurable eczema with unknown causes" might dismiss my irrefutable evidence, but maybe it will make him think if he sees another patient like me. 

To all of those reading this that have the same thing, hang in there! Nick from the Google group posted this, which is great advice:

In my opinion when you read everyone's posts you have to come to the conclusion that there is nothing else that could cause these symptoms.  There are a lot of us coming out the other end of this and you will too.  Do not lose faith, you will heal, you will be looking back one day and be so thankful that you pressed on and got through this.

My best overall advice:

1.  Stop questioning what you have
2.  Don't try to find cures
3.  Do whatever it takes to make yourself comfortable while you go through this

Someday this will be a distant memory for all of us. It might take longer - way longer - than we like, but what other option is there? I couldn't keep slathering myself in TS for the next seventy years of my life! It wasn't working anyway...I still had "eczema" coming out even when I regularly used one of the strongest topical steroids.

The only way out is through!