Wednesday, February 4, 2009


The woman I know who has had two cancers since this summer now has bone lesions. Worry, worry, worry... She has daughters, and I worry for them, too.

Someone today told me today that he thinks I'll be out of the scooter someday. His manner towards me was kind and welcoming without being condescending. What he says is true, I may very well be. But what I wish I said, the idea I hope to hold onto for next time someone says this, is that I'm fine with it either way. Whatever God has in store, there's meaning and beauty that can be found on wheels. I could tell he was someone who would agree if I'd said it. Yes, I want to work long hours when I want, hike long distances, use ballet as my exercise. I really do. But if I don't, well, I want to do as much as I can regardless.

I don't understand why I am sick with so many different things. I just don't. The doctor yesterday said a lot stems from the connective tissue issues, and that includes the bleeding problem (it's a cause of it). The bone fragility and fractures and hypermobility, the weird lab results on so many fronts (lupus/being ANA positive is a connective tissue issue), maybe even my eye scarring (irregularities that are stable and don't interfere with vision). I don't know about the spinal arthritis, how that fits in, if it's something separate or if it's part of the same puzzle. Sometimes I feel that I'm in the middle of a bamboo forest sorting my way through fragile stems, but there's no way to see the bigger picture or find my way out. The forest goes on and on. The diagnoses change and shift. It's difficult to deal with.

I just have a bad blistering allergy to antibiotic, no incisional infection. No complaints there. Worried about my friend.


Disgruntled Ladye said...

I've always had the feeling that the whole autoimmune/connective tissue thing explains a lot of issues. The doctors just don't know how they all work yet.

My old rheumatologist used to say that the medical community just doesn't know what all the antibodies are, but that clearly some people have an autoimmune disease, even without the blood work to back it up.

FridaWrites said...

I think you and your rheumatologist are right--part of me suspects strongly that a lot of people with general diagnoses such as fibro and chronic fatigue may have much more specific illnesses that we just don't have adequate info about yet (i.e., many different diagnoses may fit under either heading).