Wednesday, July 2, 2008

Cardio Update and Disability and "Delusions"

In HappyNews (TM), my ticker seems to be healthy and work well, but just beats way too fast. Sinus tachycardia without very much in the way of arrhythmia right now. Resting heart rate late at night and overnight is actually 120-150 and seems exacerbated by pain; I've only measured 120, on heart medicine. So we're switching medicines and may add another in a few months since this isn't any fun and makes me feel ill. And I get the fun tilt table test to be on the safe side since blood pressure's still too low sometimes when my heart rate is high. Turns out there's not a Cardiologist #1 and Cardiologist #2, but a PA and a cardiologist, which makes more sense.

The cardiologist sent me promptly back over to Dr. Internist for papery-crackly lung, apparently pre-pneumonia. Different antibiotic. He thinks I can will myself out of illness; yeah, right. I truly don't like illness. Not even a little. Not at all. It would be gone, baby, in a (very fast) heartbeat if I could do it. My husband's still running fever and my daughter still coughing several weeks later, and no one talks to them about needing to cure themselves or try harder.

My friend once began to believe she would walk again. Several people told her she would, and she began to believe them, that her body could heal itself absolutely. She did not renew her apartment lease and signed a new lease for a second-floor inaccessible apartment (stairs, no elevator). She made plans for moving and for other major life changes. She told her close friends and family that she was going to be healed, asked us not to tell others because they would obviously mock and criticize, and she didn't need that. She ate a better diet than anyone I know (researched for her particular illness), practiced her PT and other exercises like clockwork, meditated and prayed all the time. She did not get better, she did not walk, and her condition actually continued to worsen. She was not healed and walking as she wished, but she has exceeded the lifespan for her illness by over a decade already. So her efforts probably helped, yes, but they cannot undo genetics.

Some of her friends told her she was delusional, not in touch with reality. I never did, nor did I think it. She had asked for my support, and she wanted to give willpower a try. How could I not extend my love and help? Like the townspeople in Lars and the Real Woman, there was no reason for me to argue with her thoughts and emotions. She was not mentally ill but held a belief that was statistically unlikely to manifest itself. But how could I not hope with her and grieve with her? She had to give up this hope, but how beautiful for a few short months that she held the hope and believed happily that she would be walking. In her dreams, she was walking again.

If I could will myself out of my current illness, I would. And I try. I kept trying that with the spondylitis. I'm still hesitant to name it rather than dismiss it. I don't want to believe it. If I don't name a problem, it doesn't exist, it's on the edges of my life. I don't like to name my many diagnoses. And what if the rheumatologist is wrong? When after mentioning the possibility to me a little more with each office visit since my initial reaction was dismissive, he said more directly the primary issue is spondylitis and gave me some pamphlets to look through, I just felt aghast and couldn't respond. If I do more, if I try harder, if I eat better, pray more, am a better person, I'll get well, I think, but it doesn't work. Until now. Some kind of remission of most of it. I'm grateful, but I don't understand. I wouldn't say my mind-body connection is "healthier" right now, except what's afforded to me in pain relief. Like my friend, I do keep trying. I don't like it that people think I don't. My doctor only sees me come into the office as a very limited slice of my life.

I love this lack of pain. It's like being released from a prison. I feel confused by it. It feels strange but wonderful.

When people speak to me of the "mind-body" connection or tell me I can heal myself, I hear: "It's your fault. You're not doing enough." This from people who don't live with me or see me frequently enough to know.

On the way back home today, I saw a man riding an electric wheelchair in traffic because there was no sidewalk for him from his apartment to major intersections. I couldn't help but say a prayer for his safety.

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