Dysautonomia Awareness Month – Friday

I need to start out by saying I really enjoy teaching. Really. I do. Some days, though, it’s sort of like exercising or practicing – you know you’ll like it well enough once you get over the initial moment of inertia and into it, and it will be fine. Other days you’re still in a fair amount of pain and haven’t had much sleep and you know even if you end up enjoying swimming laps, it’s still going to be just a wee bit torturous.

Friday is somewhere in between the last two camps. The nerve block is starting to kick in, but it’s not there all the way. I have most of my normal pain plus some lingering pain from the block itself. It’s actually not the soreness down the back of my shoulder and spine that’s too bad. My pain management doc is amazing, and he’s gotten very good at these over the years. The first few were pretty horrible and it always felt like someone had been digging into my back with a rusty fire poker the day afterward. Now, it just feels like someone jabbed really thick wire into my back. It’s nerve pain and too much stuff in too small of a space and mast cell reaction pain that is at the top of the pain pile today. Drawing graphs on the dry erase board hurts. Erasing them hurts worse. The moments when the pain eases makes the moments when it surges back to full strength seem almost worse. I make it through class. I ignore a lot of student behaviors that should probably really be addressed. I use the internet at school to post the test review guide. And then I get picked up and we go home.

I was so thirsty from the past few days of increased antihistamines and the heat kicking on in the buildings that I drained my two thermoses of water – before getting a chance to mix in the cromolyn sodium that I rely on to keep mast cells in check. Without it, my nausea and reactions are so bad, I can barely eat. With it and a restrictive diet, I can usually manage to eat and not go into anaphylaxis. It’s just between cromolyn and the sheer volume of liquid I need to get through in a day for dysautonomia, I feel like I’m trying to drink an ocean some days.

I go ahead and eat lunch anyway.

I have a new email from my POTS cardiologist. I messaged to ask about the fever I ran before the nerve block, the freezing cold sensations in my legs, and some pupil size discrepancies. I got a quick note from one of his nurses letting me know they think the cold feelings when I exercise are related to POTS/EDS, and the other two are probably dysautonomia related. It’s four sentences long, and one of those sentences is the standard “call the office if you require further assistance” closing line. There is nothing about what I can do to treat it, if it’s likely to get worse, how dangerous this might be, links to info, or anything really useful. It just confirms my suspicions (and those of my neurologist). At first I’m a bit relieved, but that is quickly changing to being rather disheartened. My snark comes out in full force and I’m tempted to call and be “I’m glad that running weird fevers, having my eyes dilate at different rates, and being unable to feel my legs properly because they’re so freaking cold … except they’re not? is apparently not major enough to warrant the same level of response I demand from my college freshman non-majors for their weekly homework. So kind of you to reassure me about what doesn’t sound uncomfortable and scary in the slightest! Oh, wait, yeah… you didn’t.” There’s some witty aphorism about “cure sometimes, relieve often, comfort always.” They’ve failed on the ‘comfort’ part of the equation, but I bite down on everything else hard and keep rolling. What is going on is probably not major. I already know there isn’t much to be done about dysautonomia, so “comfort” would have been really difficult task anyway. There isn’t apparently much we can do for relief, and no one has found a cure for POTS yet. I don’t bother responding.

By mid-afternoon, I’m exhausted. I’ve tried to lie down and stay quiet but keep working a little on moving life forward via computer. I’m not having much luck. I’ve got a brilliant flush despite that, I feel sick, and I’m getting runs of palpitations now. The reaction is getting more intense. My mouth starts to feel thick. There’s not another good way to describe the sort of whole-oral swelling — gums feeling thick, tongue an unwieldy slab, my throat feeling tight — although breathing is still fine. I go ahead and take Benadryl. I’ve lost count of how many days now it’s been since I haven’t had to take Benadryl. A while, for certain. After that there’s really not much focusing on anything serious for a time.

That evening, we fix food with lots of salt. I try to drink as much as possible. We look over ballots, getting through a few candidates and some initiatives. I’m focusing far more than I used to on healthcare issues. We watch Youtube clips and a TV show while I play medicine manacala: filling up a week’s worth of cases with some 45 different medications I take each day. Over 300 pills a week. I still had a few from the last time I played, and I make a few extra, anticipating next week’s flurry of test grading and editing. The pain flares a few times and settles into a deeper constant burning with occasional stabs that make me stifle a gasp and sometimes bite down on whatever is handy.

It’s very late when I remember that I also need to do a B12 shot. We’re using a small diameter needle, but that and the subq nature and where I’m doing it that night – in my stomach – means that I can’t push it fast. I turn on TwoSet violin as a distraction. Most of the time it doesn’t hurt that much, but tonight all my pain systems seem to be on high alert and I hit it just wrong. I’m so glad there’s YouTube comedians like TwoSet. I look them up to see if they’ll be touring live near me anytime soon, but unfortunately they’re not. Maybe some other day…

It’s really late by the time I am comfortable enough to sleep. Who knows. The Dodgers game might even have been almost over. šŸ™‚



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