Waiting to see.

This is the beginning of a voyage; one that I hope puts me on my feet. I mean that literally.

I have a hereditary skin condition known as Epidermolysis Bullosa Simplex, Weber-Cockayne type. For those unfamiliar with this rare condition, it is a genetic malfunction that causes localized blistering of the skin in the presence of heat, friction, moisture or all of the above. It's passed on as a dominant trait. My dad has it, and so does my son. We've known nothing else since birth. The blisters can be very painful. We have generally accepted, many years hence, that there is no cure or effective treatment for this condition.

Recently, I got excited about a post I read on the Community Forum at http://www.debra.org, the research organization dedicated to Epidermolysis Bullosa. A gentleman in Lawrenceburg, Tennessee (my home state, incidentally) had been using Valtrex for some time now; it seems he has the same subtype of EBS that my family does. He reported dramatic positive results from this unlikely little pill after as little as 30 days.

Of course you know - I had to try.

I talked to my good doctor last Tuesday about trying the Valtrex, and he was very positive and supportive. Many years ago, when I was a new patient, he said to me in regard to the skin condition: "Honestly, I don't know anything about it - and you seem to be very well informed. If you ever run across any way that I can help, then I'll be happy to." True to his word, he has prescribed me the Valtrex and set up for regular bloodwork to be sure to monitor kidneys, liver and bone marrow. He said that it wouldn't hurt me if it didn't work - and if it DOES work, it could change everything.

I'll be 36 years old tomorrow, and I'm reaching a point where the blisters, in combination with too many hours working in chairs and not enough hours seeking out a proper diet, have pushed on to the point where my age and my weight are beginning to catch up with one another in a bad way. I've always been heavy; and I am not the heaviest now as I have ever been - but safe to say any medico would label me 'morbidly obese' or the slightly less clinical 'supersized'. I am a strong and confident person; I'm bright and effective. I'm pretty spry for a fat chick - despite the blisters and the extra weight, I don't have bone, joint or mobility issues. Let's get real, though - eventually, the pounds and the lack of exercise will take its toll. There will be serious consequences in some part of this big ol' body that I'd really rather not face.

Make no mistake - I am a size acceptance supporter extraordinaire. I have no desire to be rail thin or tan and oiled musclebound. I do, however, want to remain strong - and feel good.

So here we go. My Valtrex prescription, 3 months' worth, is en route from my insurance company's mailorder pharmacy, and should arrive within the next few days. I intend this blog as a record of my results, and plan to count steps, post pictures, report side effects, and generally provide as much information as I can to anyone interested in my grand experiment.