Shelby's JDMS Journal of Events
March 2000 to present

1 Year 44 weeks - Ending January 12, 2002

Shelby saw Dr. J on Tuesday, January 8. Her muscles look good! Strength tests are normal, her mobility is good and she reported no pain anywhere. However, her skin condition continues to plague us. I'm going to take some pictures of her elbows, knees and hands and post them ASAP. She's not as bad as she was in March of 2000, but she's not progressing like she was before. Dr. J prescribed some topical steroid ointment, hoping that will move things along. I asked him why the skin part of the disease is harder to get over. He explained it's because the blood vessels that carry blood to her fingers and elbows are small, these areas are slower to heal. The Colchicine and Plaquenil are the only meds he feels she should be taking internally. I hope the topical ointment will help.

She tends toward very dry skin, a wonderful family trait passed on to Shelby by both mother and father. Dr. J recommends a humifier in her room and lotion right after her shower, we've been using Eucerin cream as this seems to work best for the extra dry spots. We've noticed her skin has worsened since winter arrived.

I got copies of her previous lab tests. It seems to me that her her Aldolase level is going up since we took her off of the Prednisone (August). Ugh! I hope that's not a bad sign of things to come. I'm anxious for her recent blood tests to come back.  I think it takes about a week. *sigh*

All in all things still look good. Shelby tires of taking medicine, that's the worst of it. She loves physical therapy and doesn't mind doing that work. She's a little self conscious about her skin. Her skin looks a bit thin for someone her age. I hope we can get her over this. I hate not knowing when she's "out of the woods". I worry about her having to go back on Prednisone for the side effects, but I worry about her relapsing and realize it's a necessary evil if the need arises.

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Page last updated 01/09/2002.