Wednesday, March 17, 2010

In the soon to be spring

I feel confident I'll see buds on the trees soon.

Yesterday, I saw crocuses and tulips springing up. It was clear, warm and beautiful...I could see clear out to the lake which spanned the entire north horizon.

Watching the line of water made me feel quiet and a little sad. I'd gone with my apartment back in Chicago in part because of the roof deck which afforded a beautiful view of both Lake Michigan and the skyline of downtown Chicago. At night it was dizzying, a swirl of amber and white lights. It made me feel hopeful and confident.

The water on the other hand, seems to whisper of human limitations. Today, I felt that same feeling watching the distant line of Lake Erie. Poets Matthew Arnold and Lord Tennyson both associate melancholy with the open water. Arnold in Dover Beach and Tennyson in Break, Break, Break.

Before I got diagnosed with Ehlers-Danlos Syndrome, back when I only suspected, I read an excellent blog entry about how the diagnosed patient with EDS wasn't in a terribly different position than the undiagnosed patient. After this latest hospitalization, I can't help but agree. Even with the diagnosis known, they still refused to treat my pain with anything other than over the counter drugs. I was insulted, frustrated and in a lot of pain.

Yesterday I was watching the lake from the top level of the parking garage at my neurologist's appointment. He said, "It seems that they don't understand this disease...I mean, this is what you have."

I said, "They don't understand it. And they don't want to listen to me try to explain it either."

I always thought that if I could figure out the diagnosis, then I wouldn't have to suffer in pain anymore. This was apparently just wishful thinking. Or, I thought it was understood that EDS causes pain, but in the hospital the nurses treated me as if I were faking it.

So watching the impassive blue span of water made me feel more melancholy than usual.

The question is, do I risk offending the one and only rheumatologist who I know is familiar with EDS in pursuit of adequate pain treatment?

I think it's worth it. The entry I read said that patients with EDS who had been diagnosed received better care not because it was offered, but because they now had the confidence to demand it.

Tomorrow, a-demanding I go.

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