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!

1 comment:

  1. Great advice. Very true. Hopefully you will get some relief soon. I had a real turnaround at 6 months. X