Wednesday, September 4, 2013

Sept 4, 2013 - How Long Will it Take?

Okay, I'm caught up with the blog so post dates should match content.  I went to UT Southwestern yesterday for a follow-up.  The docs were pretty pleased with the progress of my edema and skin barrier, but are afraid that if I return to work it will immediately worsen.  They want me to stay home, but are going to consult with each other and and let me know.  I have not heard back yet.  I think I caught them a bit off guard...  the docs are so convinced that the only solution to anything related to skin conditions is to use steroids that they expected me to be worse.  The fact that I have improved without any use of steroids whatsoever is a bit hard for them to accept.  And it gives me hope.

My days are falling into a bit of a routine.  Around late evening, about the time I should be going to bed, the insidious itching begins.  There is no way I can get any sleep in this condition.  It doesn't seem to matter at all what I take to supposedly help the itching, nothing works except a bath.  I have tried virtually every pain reliever and anti-histamine, but nothing does anything.  So, after a yet another bath I snuggle up on the couch and promise to myself I will not scratch.  It doesn't work.  The level of itching I swear is beyond any humans ability to resist.  I have bought a baby scalp massager after reading a recommendation form another TSW sufferers blog, and it helps a lot in that I can use it to scratch but it minimizes the damage to my skin.

I watch TV until bout 5:00 a.m.  My favorite is The Science Channel, History Channel, Velocity HD, etc.  How It's Made, Through the Wormhole, The Universe, Myth Busters, Survivorman, American Pickers, Pawn Stars, etc.  Ask me anything about astronomy and I can probably tell you.  I love Morgan Freeman's voice.  The vastness of the universe fascinates me.  Everything sold "As seen on TV" is total crap.

Eventually I will fall asleep for a few hours.  The itching wakes me up and I head for another bath.  The day consists of snoozing between baths.  Monday, even with family visiting for Labor Day, I took 5 baths.  Even though I eat as a distraction, I have lost about 5 pounds, but then I am not exercising at all.

The progress is promising on the one hand, but the rate of improvement is depressing.  At this rate, it will take forever to get well.  I can't not go to work much longer.  What happens when I do?

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