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Strangely, Having an Official Disease Diagnosis Does not Make Me Want to Take Up Sky-Diving

19 May
My doctor says that many of his patients find that learning to give themselves injections is "empowering." My verdict? Actually--yes!

My doctor says that many of his patients find that learning to give themselves injections is “empowering.” My verdict? Actually–yes!

I have not written in this blog for more than two months. It is no coincidence that I stopped writing after I visited a highly recommended rheumatologist who spent 90 careful minutes with me, squeezing my joints, asking me questions that were similar to what my last rheumatologist had asked, and asking me what I wanted to ask. But he also did something that my other, very smart but very cautious rheumatologist had not dared to do in several years of treatment: give me an actual, solid diagnosis. He said to me, looking at my three-ring binder filled with five years of MRIs, cat scans, biopsies, doctor visits, etc., “You’ve had a LOT of testing. But not a lot of treating. I think, given your family history, given your symptoms, given everything, that you have an inflammatory autoimmune disease in the spondyloarthropathy family.”

“The spondyla—“

He helped me spell it out for my journal and explained it for me. Because I have a certain blood factor called HLA B27, I am susceptible to a disease called ankylosing spondylitis (which basically turns your whole spine into one stiff unit) and several similar diseases—spondyloarthropathies. They include axial spondyloarthropathy (which has different manifestations, but can include having more arthritis all over your body), psoriatic arthritis (a combination of psoriasis and arthritis—nice!), Sjogren’s syndrome, which makes your eyes dry and other nasty things, and even Crohn’s disease—a severe intestinal problem which is called an enteric arthritis. I never knew that there could be an intestinal arthritis, but there you go. I know a lot of things now that I didn’t know, thank you Google, Twitter, and Pinterest.

Anyway, what I have is similar to rheumatoid arthritis, except that it lacks the exact blood factor that rheumatoid arthritis factor has. To have that, one would be sero-positive. This is sero-negative arthritis. But it’s not the same as osteoarthritis—which I also have in some parts of my body, such as my hips. That’s just bones wearing out and rubbing against each other. Or synovial fluid running out, or whatever. I can’t think about osteoarthritis right now.

To have a diagnosis after five years of searching for a reason for the pain and fatigue that have changed my life, and my husband’s life, so much, is a relief in many ways. For one thing, I have medicine to help treat the disease now, not just the pain and the sadness that it causes. To their credit, my doctors have believed that something real has been happening to me from the beginning, even if they couldn’t name it. But now I have two kinds of drugs that I get to inject each week, and they are starting to help. But on the other hand, I feel a shifting sense of identity as the fact of my diagnosis becomes real to me. It’s not a disease that will kill me. On the other hand, it’s not going to go away. I’m going to spend the rest of my life fighting against an enemy that wants to lock me in a stone cage made of my own body. I know its name now. And that’s good. But it’s not filling me with zest for life or an exciting new sense of purpose. Right now, it’s making me feel as if someone threw a brick at my head, and I’m just now sitting up and rubbing the bruise and going “whaaaa—?”
So dear friends and readers, please pardon my long absence. Perhaps now that I’ve told you what’s kept me away, I’ll be able to be silly, curious, and natural again. I hope so. I miss you.

Writing Prompt: Did you ever get any news that took a long time to digest?

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