Tuesday, October 30, 2012

Being 'special' isn't so great....

So, over the past year, I've had three eruptions of blisters and such to accompany minor wounds on my hand and forearms. I went to a dermatologist who tried to figure out why. She couldn't give it a name. At least she could treat the conditions.

Just this week, after a week of having my bruised foot turn to blisters did I make the connection and call her. She told me that she is now sure I have Epidermilysis Bullona Asquisita (known in the dermatologist world as EBA.)

She can treat the condition. But it won't be the last time. I developed this, like most people who have it, after 50. Another form of the same condition is hereditary. Not mine. I looked it up on line and found about a million hits. I read enough to know I can't understand the medical lingo and far enough to know you don't die from EBA but it is a pain in the ass.

I'd been doing everything wrong. She believes I'm allergic to Bacitracin, which the Dr. at Urgent Care told me to us (he was great, inspite of that). All I'm doing is soaking it twice a day in a 1 to 3 mixture of vinegar and water and taking an antibiotic that is doing as much damage to my insides as the one she told me to stop taking. (But no mention of bowel movements--not me!)

Here's the thing: from what I read on line, 0.25 people per 1 million have this condition.

200 million or so Americans means that I and half a million people have this. That's way better than the "the 1%".

But who said being special is so great....?

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some ponderings by an aging white man who is an Episcopal priest in Connecticut. Now retired but still working and still wondering what it all means...all of it.