Tuesday, August 12, 2008

Feel Free to Skip

This is just a vent. Feel free to skip this entry; there are no interesting thoughts here.

I woke up this morning with a desperate desire to remind myself that I once had a life. So I sat for a long time with a cup of coffee and remembered some of the many many projects I worked on during my career.

I think that's what is the most difficult about my disease: every day is exactly the same as every other one. The only difference is the level of pain and/or weakness and muddle headedness that I'm feeling. Unfortunately, my immunosuppresant drug was discontinued because it was damaging my liver, but they have not yet prescribed a replacement. So, I'm really feeling the pain right now! I've got 4 hours till my next pain pill.

Unbelievably, I continue to lose weight (muscle mass) even though I'm on prednisone. That's truly amazing. The women in my support group give me a lot of grief about it. Most of them have put on nearly 100 pounds from the steroids, and they are on much smaller doses than I am. This muscle loss has got to stop. Everything I read tells me that this muscle is probably irrecoverable.

Anyway, so far this has been one of the tough days. I'll have to work extra hard to get myself out of this mood.

Update: I decided to take myself on a couple outings: to the drugstore to pick up 4 prescriptions waiting for me and then to the seminary bookstore to see what their new New Testament studies professsor was using for his class on the expectations of the messiah in the Old Testament. Sounds trivial. But, I ended up spending the rest of the day in the Emergency Room. I could have sworn from the level of pain that I had broken my back, literally fractured my severely osteoporotic vertebrae, but apparently, it was just a muscle pull. Since I no longer have biceps or shoulder muscles every activity involves my big back muscles.

The interesting thing about it all was that they found an old compression fracture in my thoracic vertebrae. I've been asking for a long time why the docs always test the cervical (neck) and lumbar spine, but ignore the thoracic region. I still don't have an answer, but finding this compression fracture would have explained the pains I first went to the doctor about over two years ago.