Midodrine, 504’s, and Covid

Alternate Title: The Part I Mostly Want To Gloss Over, But I Really Want This To Be Chronological 

Upon admission to the neurological clinic, I was quickly started on a medication called midodrine, which kept my blood pressure up throughout the day. Midodrine is in a class of medications called alpha-adrenergic agonists, which work by tightening blood vessels (thus raising blood pressure).

I had to be careful not to lay down for several hours after taking it, or else my blood pressure could get dangerously high, which is a problem I really didn’t expect to be having back then. I had a bottle at home, one for out in public, and the school nurse also had it on hand, and came to give it to me every day at lunch – but was also on call whenever I needed it. That’s right, only the REALLY cool kids get to text the school nurse. We were pals. She would give it to me, stand there and make sure I actually took it, and then we would both watch in anticipation as I took my blood pressure with the small wrist cuff that came in my backpack with me everywhere. Once I was in the green zone, we were good to go, but since this was a medication that raised my blood pressure, I really had to keep an extra eye on it because we didn’t want it getting too high. Luckily, it helped just enough while I was on it.

At school, I was very self-conscious about my blood pressure cuff and needing to use it because it was LOUD. I tried to do it during passing periods or at lunch as much as possible, but I would get antsy if I hadn’t checked it in a while. I definitely obsessed over monitoring it, but for good reason, I suppose.

At this point, I had a 504 plan established with my high school. This very important piece of paper allowed me to take my time getting to and from classes – I technically couldn’t get in trouble for being late to class because they didn’t want me rushing to stand up when the bell rang and then fainting, but I was still so worried about the potential moment where I would walk in late to a quiet classroom and experience everyone turning around to stare at me that I was never late to class, not once. It allowed me to miss more than the normal allotted amount of school days. It allowed me to take breaks during class if I ever needed to, which I also never used because I never wanted to draw any attention to myself. I did not have to attend assemblies because of how hot they were, and that part was amazing, because I would get very overheated with the entire school packed into the gym. I did report often to the nurse’s office, and often went home early (thanks for picking me up, mom!).

The best thing that came out of this is that I got P.E. completely waived as a graduation requirement. That was easily the highest anxiety-causing thing in all of my years of public school, so not having to do it at all was a huge weight off my chest. Not to mention that I literally physically could not do P.E. at this point in my life, even if they tried to make me. 

I was able to work with my teachers via email as needed if I wasn’t there at school. My teachers were able to use their own judgement to modify or reduce my workload, and were able to grade on a pass/fail basis as needed “to support Isabelle’s health related absences.” This would have been my junior year, or 11th grade. I believe I did okay in the end in all my other classes, but math has always been my hardest subject as is, and my not-even-bare-minimum attendance really tanked any progress I might have been making (especially because the class was geometry – I just shuddered thinking about it). Even though there was somewhere in my 504 where it said “Isabella,” I still appreciate it a lot. 

By the end of the school year, I just hadn’t succeeded enough for my teacher to let me pass in good faith. So, I failed geometry. I wasn’t necessarily upset to have gotten this particular bad grade, but I was feeling quite disheartened in general because I had been a “teacher’s pet” and a “straight-A” student all my life, so I knew I was capable of not only succeeding but thriving academically, but my health had made something once so easy for me become very difficult. (Although, you know what, I must not have been a very happy camper because I still had to retake the class senior year.) English in particular was my favorite subject throughout school, but by the end of the year I had been put on home hospital and my English teacher mailed me a giant stack of work. If I finished it and returned it, yay, I passed her class! 

Home hospital is a program for students who are temporarily unable to attend school due to disability or illness. It got to the point where I was missing so much school that this became my final option. One of my all time favorite teachers stepped up to the task and would deliver me stacks of work directly from the school. 

I have left out a very significant part of my time spent at the high school, and those are the hours I have spent in this teacher’s classroom – a life skills classroom for medically fragile students with disabilities. These were truly happy and amazing times that I will be forever grateful for, as they showed me my true passion in life at such a young age and gave me the immediate path and connections to pursue it. I began as a TA (teacher’s assistant) my first year, then moved up as an intern my second year, and my third year I wasn’t even technically listed as part of the class, but I was always there somehow because I loved these people. So it’s worth mentioning that there was some significant light for me in these dark times, and this was it, and this was the teacher that volunteered for my home hospital. 

Somehow, I finished junior year, whether fully present or not, and slogged on to senior year. I had less on-campus classes because I was doing the Running Start program, which allowed me to take college classes and work on earning my associate’s degree simultaneously. As part of my updated 504 plan, I did not have a first period, as it allowed me more time in the mornings to get my body adjusted to being upright. I also slept on a fancy wedge pillow to elevate my posture that helped slightly with this. 

I couldn’t drive yet (I believe this was during the “seizure-ban”), and my grandma was already in the area to drop my cousin off at school, so the best thing that came out of this was getting to spend a lot of time with her in the mornings before she dropped me off as well. We would go to Starbucks or sit at the Haggen cafe and started working on stories together – individually, but together. Mine was an epic high fantasy novel that I could already see becoming a NYT best-selling multi-book series, for sure. This eventually turned into me working on my epic history thesis about the Salem witch trials instead, but it was still fun. 

I was retaking geometry, which sucked, but that’s all I remember until Covid happened. Yay! 

Spoiler alert: I did pass it this time, and I did manage to graduate. And I still would have managed, even if all of the requirements weren’t super lax in 2020 because school had basically been shut down for months and no one knew what the heck was going on. There were some zoom meetings, and some online assignments, but mostly worrying about impending doom and whatnot. 

Prom and grad night were canceled, among random other senior traditions that I never knew existed. The majority of the graduating class was understandably very upset by this, but frankly, I could not give less of a shit. I was so done; I just wanted it to end.

SO. DONE. 

SOOOOOOOOOOOO DONEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE. 

They were not able to hold a normal graduation ceremony, so they ended up doing some socially distanced recorded magically edited online thing, but I did not participate, as I was VERY VERY DONE and just wanted to become a free elf at the soonest possible opportunity. It is 2023 and I still procrastinated writing this section for like a month because that’s how badly I want to avoid even thinking about high school. 

It is likely selfish of me to say that the initial lockdown/quarantine/isolation/mystery panic period of the pandemic worked wonders for my mental and physical health. Being forced to stay at home 24/7 was literally like a dream come true. It’s basically what I was doing, anyways, this just made it the social norm and got rid of outside stressors and expectations. I definitely freaked out and became a germaphobe x100000, but that probably helped raise my blood pressure a bit.  :) 

Of course, this was not an easy time for everyone, which is why I feel sort of guilty that I remember it so fondly. 

Lots of board games were played with the family, but also lots of video games, you know, for balance. Katie began a tradition of delivering the baked goods she made way too much of (not complaining here) and we would stand socially distanced on the porch/walkway and talk for hours. She challenged us to an epic blanket fort competition, which we totally won (I can’t remember if this is true or not), and it stayed up blocking the entire living room for much longer than I thought it would be allowed to. I was having a mattress crisis (long story), and was living on the couch. Liam slept in the living room the entire time I did, and I introduced him to classic Disney movies he had never seen. We sang happy birthday as a giant extended family to my cousin on Zoom, and one day I heard honking and looked out of the window to see a “social distancing birthday parade” complete with balloons taped to cars and “I love you” painted on windows. Katie and I even started sending each other letters in the mail, like it was the 1800’s. The news was filled everyday with horrific stories and statistics, but also heartwarming stories and things that restored my faith in humanity just a little bit more. There were definitely downsides, but it could have been a lot worse. 

(I should note at some point that I was very, VERY relieved to hear the final word that school was canceled indefinitely. Until, that is, I suddenly realized a few days later that this was, in fact, my very last year, and that I never got the chance to say goodbye to all of my most beloved friends in room 203. Then I just burst into tears and was in a pit of absolute despair about it. And I still haven’t gotten that chance, and it’s still awful. I do have contact with many people from that classroom, which I am incredibly thankful for, and I still love them very much! But my heart is still broken and missing some others. It is very bittersweet, but I would not trade the experience for anything. I just wish I could have gone back and given some hugs a little tighter.) 

Anyways, these past few posts sum up my health journey from childhood to age 18, where I was diagnosed with and treated for dysautonomia. I am writing these posts in chronological order so that everything makes sense when I get to the point I am now.

I couldn’t help but notice that my post about the tilt table test has more than double the views of the post before it, which actually explains what dysautonomia is and why the TTT was necessary. You are free to read whatever you please, of course, but if you are confused, that is why. I know the title “The Tilt Table Test” is WAY catchier. 

Stay tuned for things to get way better, and then worse again, but different! 

Autonomically, Isabelle