sigh
2002-02-07

Sigh Well, thats not a good way to start an entry, but thats how I feel this morning. I went to the doctors yeesterday. See I have this thing where my bodies immune system, gets confused and kind of goes after things it shouldn't. It messes up my skin and joints and I end up a mess.

There are drugs you can take but they all have pretty major side effects. Some of them made me really sick and the one I tolerated the best, screwed up my liver and blood pressure last time. But there is a new one. A once a month shot. So far no side effects at all. Supposedly works great. I was supposed to get it this time. I showed up last night early and full of optimism. They took me in right away. This is VERY unusual for this doctor. She bops right in and tells me (with a smile on her face no less) that I'm not getting the new drug. Well not until November at the earliest.

The FDA decided they want to run another series of tests at different dosing levels. That trial will take six months. So last night I went back on Cyclosporin. This is the same drug they give to transplant patients. Fun stuff and VERY expensive. My copay with the old insurance was $200 a month.

They are going to check me out more often and hope I don't react as badly as the last time. Would you trade being able to move without pain, and normal skin for a couple of weeks of really bad headaches and the chance you might stroke out? Nice options.

I have to do everything I can to help reduce the side effects. For the next month or so I need to try and get my blood pressure as low as possible. I also need to protect my liver. That means I need to cut my alcohol consumption way down. This is probably a good thing any way I guess. I also need to cut out sodium, lose some weight and run every day. Oh yeah, give up my morning dose of caffine. None of these by itself is a bad thing. Just major life style changes.

Hopefully all that good stuff will be enough to keep the the medicine that is saving me, from killing me. What a mess. One of my sisters and my surviving brother both are in the same boat. Sis knows about the postponement. Bro does not.

So I went home, bummed and did two miles, cooked a healthy dinner and didn't pour a Merlot. I figured if I was going to be miserable, I might as well go all the way, so we stopped in and visited my mom with the broken foot. The visit was actually pretty nice and since her and Bob can't get out, they really needed the company.

It is going to be a long month. sigh

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