Dysautonomia Awareness Month – Tuesday

Tuesday is nerve block day. I’ve been looking forward to it for weeks now. I know that in the normal person world, looking forward to a painful and invasive procedure is decidedly odd. But if it works, then I’ll have greatly reduced pain for a couple of months. I just have to figure out how to survive it without the increased pain from the procedure and the drugs triggering a mast cell reaction. We’re doing a full premedication protocol as recommended by my doctors (it’s also in the Mastocytosis Society’s Emergency Room Protocols guide – https://tmsforacure.org/wp-content/uploads/2016-TMS-ER-Protocol-Pages-2.pdf). After I got hives in my ears last time from the block, we decided it was time to go in, all guns blazing.

I get up, drenched with sweat from the prednisone and pain, after about 3 and a half hours of sleep. Tuesday morning comes far, far too early. It’s a weird thing about mornings. They almost always seem to come too early. Also, I have work to do and I hurt, so I’m not going back to sleep anytime soon. Instead I turn on my laptop and return to my editing job from the day before… or from just the other side of today. It gets done.

One hurried shower, and then my roommate (my very dear sister) runs me out to my job. I’m so happy that she can. Even apart from the time crunch caused by doing a last-minute editing job, I didn’t feel up to walking up to the bus stop with my backpack, enduring the 15 minute jolting ride into school, and then the 10 minute walk into the library from there. My campus is under construction indefinitely, and access, always difficult, is now horrible. My navigation skills are legendarily bad. I have gotten so lost I wound up in ANOTHER STATE. And this on the western side of the USA, where states are large. But to survive as a disabled student on campus, I need to have intricate maps running through my head. On good days, I might be able to manage this staircase. On a bad day, I’ll need to cut through an extra building, taking two elevators to get to the right floor, take the bridge over to another building, and then I can take that elevator down to my destination. It’s like a kooky Maurader’s Map, but without the benefit of being able to tell where my professors are … something I’d really like. Still, the chances of them riding  the stinky utility elevator used to haul the trash out of the building are slim to none, so I’m all right. Apart from the smell, that is.

I tutor students for several hours. At one point, I give in. I usually try not to obviously medicate in front of other people, particularly students. But on Tuesdays, students are shuttled in so quickly for short writing tutoring sessions, there just isn’t always time to get the pills down before the next student appears. She is shocked and wants to know why I am taking so many medications? I explain bluntly that I have chronic illnesses and if I don’t, I’ll die. She understands. We move on. I don’t feel very invisibly disabled at the moment. I feel a little badly about answering her question so abruptly, without softening it at all. But I’ve worked with this student before and instead of being offended, she offers sympathy and we move on. Problem sorted. I compartmentalize and focus on teaching.

I get picked up again after work. We go back to the apartment and I take more medications and down about half a bottle of dye-free Benadryl liquid. It’s bubblegum flavored. I hate bubble gum flavor. I realize that this medicine was probably aimed at small children… but even when I was little, I hated bubblegum-flavored gunk. Yech. I take it along with me, just in case our new premedication protocol doesn’t work. I’m hoping so badly it does. We’re on nearly our last solution for reactions during nerve blocks, and if it doesn’t work, I’m rather scared of where that might leave me.

It’s a half-hour drive to an older hospital. I’m nervous and we joke all the way in, cursing at truly ridiculous mid-day traffic. The waiting room smells so strongly of cigarette smoke that we leave and wait for awhile outside, but it’s a gorgeous day. I wait ten minutes, then go back in. A nurse was just on her way to find me with my hospital armbands. We go back and get vitals, and after 10 minutes in the sun, I have a temperature of 99.6 degrees. I think it’s probably related to dysautonomia — temperature regulation is part of your body’s autonomic system. My autonomic system is very clearly not happy with me. I don’t feel sick and the rest of my vitals are good, so we decide to continue with the block.

It was the nicest experience I’ve ever had, I think. My pain management doctor recently moved, and it’s the first time I’ve had him do the block in his new hospital. After 2 years, he has this down. The new nursing team he has is fantastic. We do it without sedation (other than the Benadryl), and without X-ray contrast to lessen the reaction. I can feel myself start to flush under the drapes as we begin, but then something wonderful happens. Someone touches my leg. I can’t see anything, but I’m fairly certain that is what that sensation is – through compression stockings, sensation can be a little off. The sense of immediate comfort and a presence is shockingly strong, though. A few more seconds, and I’m sure — one of the nurses is gently letting me know she is there, rubbing my leg during the painful moments, wordlessly helping me through the procedure. This is a first for me, and it gives me something else to hold onto during those first few painful blocks. And then the initial part of the block is kicking in and I can feel my whole body just sag in relief. The feeling of my sternum being blowtorched with every breath, my ribs separating and cracking apart like overstretched elastic, is fading rapidly. I sigh and suddenly find myself drifting off to sleep, right there on the table. I’ve only had sleep in 3-4 hour snatches for days now, and I’m completely exhausted.

Afterwards, I have some minor flushing outlining the are of the block, but it’s far less than we’ve had before. I ask for permission to just lie there and rest, and make sure that the flushing goes down instead of accelerating into a full-blown reaction. They agree and I’m out like a light. One win against both intercostal neuralgia (thank you, EDS), and mast cell disease for us. These people are my knights in shining armor, saving me from the torture that breathing became a few years ago. The first few times the blocks worked, I nearly cried. I shook like a leaf and laughed, the relief is so phenomenal. I don’t know where I would be without the help of these doctors. Truth be told, I don’t even want to imagine it.

We drive home, and I spend rest of the afternoon and evening resting. The only trouble is this puts me behind on my oral intake of fluids. Thanks to dysautonomia, I need to drink somewhere between 72 and 100 ounces of fluid a day. That’s hard to do most days, but nearly impossible when I’ve spent most of the afternoon asleep. My body feels the effects some now in the form of increased wobbliness, but I know the next day will likely be worse. In the evening, the pain returns too, as the initial burst of painkillers during the procedure wears off completely. I haul out my lecture notes and prep for my class tomorrow, glad that I got to rest earlier after all.

And under it all, I’m still smiling at the staunch sauciness of my sister by my side, the kindness of the nurse who helped me through, the phenomenal gentleness of my pain management team, and the relief that I know I’ll get in just a few more days.

Just a few more.

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