Dysautonomia Awareness Month – Wednesday

I don’t want to teach on Wednesday. I’m tired, I’m sore, and I just realized that I can’t take a hot shower. I can’t find the scissors in time to free the hospital bracelet from the other ones on my wrist and I’m running late, so I just make sure not to push my long sleeves up while teaching. I teach two sections wearing it, trying not to let the pain distract me too much. We don’t quite manage to cover what I’d hoped, but that’s okay: it fulfilled my classroom goals. 1) no one died; 2) no one had serious physical or emotional damage; 3) we DID actually learn something about music, life, the world, and everything in it. In this case, it was Beethoven’s Symphony no. 5. It’s been taught in almost every class I have attended as a student, TA’d for, or flat out taught. I still love it. I have a feeling I would fail every pretentious music lover’s test out there… and I just don’t care. Crank it up.

Beethoven winds down, and I take a Lyft back home. I’m not sure what happens to the afternoon, except that it involves ice, Benadryl against the mast reaction flaring in response to pain, and a nap. I think I email a couple of doctors, asking about the high temperature I ran before the nerve block. We’re also trying to figure out another strange wrinkle of my body, one that is probably a function of dysautonomia as well — I can only walk for about 7-12 minutes before it feels like I’ve strolled casually into the Pacific. Not the Pacific near San Diego, either. More like the San Francisco Bay. Icy cold begins to spread, usually starting at my feet and then flowing up my legs. I still have sensation, although honestly it does feel a little bit different and rather numb. My legs, however, look and feel normal: warm to the touch, a sort of grad-student pale pinky-white, not even the lumpy gray-purple that happens when blood pools. It happens more quickly when I’m wearing compression, but there’s no indication that my compression hose is too tight. During the summer, this meant I had my own personal air conditioner. Now that it is fall, I’m really hoping we can find answers.

Curiously enough, I don’t tend to notice the ice effect when I swim. Any other activity, including biking, yes. Maybe it’s because I’m completely horizontal when I swim, or there is not a hint of compression on my legs … or maybe it’s competition pool is already freezing cold, and I simply can’t tell the difference.

Once again, I don’t manage to drink enough fluids and I’m wobbly by nightfall. It is a continual battle for me to just chug enough water. How does one manage it when you’re asleep half of the day? I stagger into a couple of walls and settle down for an early night, instead, praying that the nerve block kicks in soon.



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