Dysautonomia Awareness Week – Thursday

Thursday morning starts with a phone call. It’s after 8 am, so it’s not as terror-inducing as the early morning variety, but I’m not much of a morning person. My sister has already banged on the door and groaned “Mel … meds” through it, hoping I’ll remember what the fire-alarm clock is there for and shut the stupid thing off. So I’ve done that, and I’m awake, but I’m still lying there groggily waiting for them to kick in. My world is still static and swirling gold shadows. The whole low blood volume/pressure aspect of dysautonomia can make mornings really rough.

The call isn’t from a number I’m familiar with, but in a second I recognize the name on the other end of the line. It’s the manager at the infusion center that will — hopefully, please please let it be soon and work — administering a new drug to treat my mast cell disease. I don’t know if I’ve already written about the logistical nightmare getting this drug has become. Let’s just say that we talked about trialing this drug last year, made the decision to go for it in June, and are still trying to get it set up in October. Since then, I’ve gone into anaphylaxis multiple times. I feel like being a teenage drama queen, stomping my feet, rolling eyes, flipping my (practically nonexistent hair), and going “never mind me, I’m just dying over here.” But for all that, I actually feel healthier and stronger than I did when this was first being diagnosed, and I know I am doing far far better than many others with this condition. The infusion center has just sent some more paperwork into my insurance company. I try not to cross fingers that this time everything will work, try not to hope that this medication will do better than anyone expects and that I’ll be walking the library and going for mac and cheese with my friends any week now.

…yeah. So much for not hoping. I’m going to blame it on my dog, because growing up our golden retriever/ English setter mix was an optimist. Despite 13 years of the roast never jumping out of the pan, he’d look at it expectantly, doggy eyes agleam, and seem to telepathically urge “JUMP, roast! I’ll catch you!” Every. Single. Roast.

At least it gets Thursday morning running. I go for the kid’s tear-free, dye-free shampoo. The nerve blocks last a lot longer if you don’t get heat on them – and this means trying to lay off the hot showers for few days. I have a pixie cut. I like pixie cuts. But they’re also very practical when even on a good day, showers can be the enemy of someone with dysautonomia. Static standing in a hot environment means all the blood hits your feet very fast, and the heat can do weird things to my mast cells too. Not to mention when my hair was longer and I went into a reaction, I broke out into hives anywhere the strands brushed my skin. Now it’s a tight pixie, and I can wash it in the kitchen sink after having a nerve block. What I don’t anticipate is the total head rush from trying to dry it stand up again and dry my hair, and that puts me down on the floor. But not for long. Then I’m off to side gig number 2.

Three hours of intense doctoral proposal tutoring later, I’m spent. I have an email from one of the doctors, though. I need to go pick up some medications from the student pharmacy. There’s an antihistamine I’m on that I don’t much like, but it’s helping some. Until the insurance company approves this other drug, I’m to stay on this one. That makes it sound like I’m on only one or two drugs. The reality is 45 different pills, supplements, vials, or shots every day. I try to stay good friends with the pharmacists, and they’re very kind, good people who make it easy for me. There’s also something about the 99.6 degree temp I was running before the nerve block, but I can’t actually make heads or tails out of the doctor’s message. I don’t have time to puzzle it out. I’m getting buzzed every couple of minutes with questions and emails about everything from pumpkin carving parties to when I’ll be ready to be picked up.

A nice campus Starbucks fills up my thermos half-full with warm water so I can mix up meds. While I slug those down, I go to the pharmacy and pick my my prescriptions.  I pay everything I just made tutoring for them, which is actually pretty affordable for meds. It’s just tutoring doesn’t pay that well, and with the points system at my work definitely favoring the local and able-bodied students, I’m never going to earn a raise. I walk over to the next bus loop, drink, and try to sort of the important from the non-important emails.  It’s almost 2 pm when I get picked up.

And then we go to the bank and the grocery store and the drug store. Let’s just say that there is a sisterly pact of secrecy over certain misadventures of the trip, and it takes us much longer than anticipated. I’m feeling the pain and exhaustion a lot by the time we make it inside the apartment. I’m on 25 mg of Benadryl and hoping it will be enough, and I go lie down. Leaving my sister to finish getting ready for company and entertaining people by herself, but it’s that or they’ll get to be entertained by dealing with me in full mast cell meltdown. I sort of doze off for a bit.

And wake semi-panicked, because I had 9 more quizzes to grade and had promised my students a test review sheet ages ago, and now – yes, conversation has percolated in, slowly, through the hearing flaps. The internet is spotty to non-existent. The low stress dinner is not being very low stress on the prep side, although the case of the curiously congealing cheese sauce provides a lot of entertainment for It’s a perfect night for hanging with friends, playing board games, and chatting, but we’re all exhausted. me. At least we have ice cream and rice.

When everyone is gone, I work on the last bit of my lecture for the next day. I can’t get internet access to work reliably enough to upload the test review, fill out any of the timesheets I need to, pick out or preload the listening clips, or even just print my freaking lecture notes. I finally drop off, but it’s after midnight again, and I’m still not ready for Friday morning.


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