5.5.08

I find myself bracing...

John discovered new 'spots' on his leg last night and the night before. In the past 'spots' leads quickly to a full blown wave of vasculitis and another hospitalization. ('spots' are actually blood vessels that have ruptured under the skin due to attack by an immune system that is confusing healthy vessels for sick ones). We are hoping this time is different and the spots will lead to nothing. His steroids were decreased to only 5mg last week, ...which is what makes me so nervous. It's the steroids that seem to keep the vasculitis at bay, though I know he cannot stay on high doses (up to 80mg a day at one point) forever; so he's been weaned a little at a time. Each time it's usually ok. This time, ...spots. I find myself bracing.

Also, John's legs have been swollen first thing in the morning for the past two days. This is also new. Usually he has to be up and around before they swell and at least he'd get a break in the morning. There's been no break this weekend.

Finally, last night in the middle of the night John's uvula (that little fleshy thing that hangs down the back of your throat) swelled to the point of restricting his airway. Now, for those of you that do not know John, this has happened about once ot twice a year for the past ten years or so.
It's frightening but usually gargling with benadryl and taking an antihistamine takes care of it in about 4-6 hours. Makes for a miserable time though. The first few times we ended up in the ER b/c of it, ...when we didn't know what was happening. He's been tested for every allergy under the sun. There seems to be no rhyme or reason to it. Today he said, 'I wonder if this happening for the past 10 years is in some way tied to the vasculitis?'. It's been a mystery for years. If what he does have is Wegeners then that might make sense (wegeners seems to create symptoms in the ears/nose/throat/lungs area). So, nothing we can't handle (though in theory it could totally block off his breathing one day and lead to an emergency tracheotomy) but I can't live in the world of theory right now b/c the present is challenging enough. Anyway, the antihistimes helped enough that he was at least able to breath a bit but was pretty uncomfotrable the rest of the night. When I left the house this morning he was exhausted, pretty defeated, and went back to sleep.

He sees the doc again this Friday (I think). I suppose we'll mention it then, though we are both tiring of being the area's mystery patient. They never seem to really know what to do with us. In the meantime, we're praying for those spots to not esculate to a full blown relapse. Thanks for praying with us.
k