April 2012, NO PLASMAPHERESIS

Insurance won’t pay for it; they say it’s experimental (actually they said no to IVIG, which I had in the hospital previously! Doc said it wouldn’t be any different if she asked for plasmapheresis; don’t understand that. Maybe because they’re both experiemental. Of course, everything is with HE! We need to find a treatment! What now? No more oral steroids!!!

February 22, 2012, PLASMAPHERESIS TO COME

I’m weaning off these darn steroids before my 8 weeks are up. My stomach aches, my weight gain, the knowledge that these pills are eating away my bones and muscles, the headaches when I try not to drink coffee I’m supposed to avoid….there has to be something else. So Doc K says we should try plasmapheresis—remove the plasma, clean it of antibodies, put it back. Don’t know how often this would have to be done, but the side effects aren’t as bad. Still, that means another hospital stay; she’ll make the arrangements.

January 29, 2012, STERIOD SIDE EFFECTS

This is my fifth week on oral steroids…prednisone. My doctor thinks it is worth trying to see if it keeps me regulated…my numbers, that is. So, I’m exercising at the gym 6 days a week; I’m eating less, drinking more water, taking stomach acid pills, and extra calcium daily. And I’m putting on weight. There’s nothing that counteracts the fat-building effects of the steroids, and I know it. This knowledge, however, isn’t enough to keep me from getting more and more upset. The weight may be superficial, but to me, it’s still more aggravating and frustrating than just about anything I’ve had to face so far. Still, I feel better physically. But I know there’s a point coming when that won’t matter to me at all; I’m used to feeling lousy. I hate my clothes not fitting. I haven’t been so heavy since I was pregnant. I don’t think I’ll last the full two months on these pills.