Dysautonomia Week – Wednesday


1:30 am – I decide that a quick bath might cool down the flush/rash and would make it so I can breathe, since nothing else is working.

3:30 am – I lurch from a doze, coughing. When I flick on the bedside lamp to fish for the Kleenex box that has gotten knocked out of reach, it looks like my hand is trailing golden cobwebs. I’m no fan of spiders, so I try to swipe it off. I don’t feel anything, and there’s more cobwebs streaming off my other hand. Maybe my sister’s hair? I think, as I grab a Kleenex. But no, she hasn’t even been to my new apartment, and there isn’t any way I’m dripping her hair. It doesn’t feel sticky like cobwebs, or even stringy like hair. I blink, and light shatters and breaks. I figure it out and drag my entire arm through the air. This time I see the whole thing – a shadow arm, following along behind, a barest lag from the real one. The other arm does the same thing. “Cool,” I breathe, swooping my arms through the air. This whole process sounds like it took ages to figure out, but really, it was about 5 seconds. I play with the light a little longer, trying not to pay attention when I blink, because the shattering starfire is almost painful. It’s fun, and it would be marvelous to conduct to, but I’m super exhausted and I have a headache pounding away on one side of my head. If I wasn’t so tired, I’d probably freak. I’m tired, so I just tune out the neighbors arguing in the hall and go to sleep.

7:13 am – I wake up to the knowledge that something’s not right. The alarm has been beeping for 13 minutes straight before I heard it. It takes me a while to figure that out. Longer than it took me to figure out that it wasn’t cobwebs but illusory palinopsia this morning. I slap it off. The other TA is covering the 9am class. I do manage to take meds.

9:47 am – I wake up again. I have vague memories of trying to turn off alarms or whatnot. But nothing definite. It takes a lot of work to focus on that clock. I know I’m not going to make the 10 am staff meeting now. I pull out my phone and try to message someone, but my head keeps hitting the pillow and there’s two bloody phones and nothing is in focus, at least nothing that has a light source. I try to set a timer so I can try again in a bit. Google helpfully responds to voice commands.

10 something… – I’ve given up on timers and texting. It seems like I’ve ordered the phone to set a new timer a couple of times now, but it’s foggy. I give up in earnest.

12:45 pm – I wake up. Yet again. The world is much clearer. I’ve also completely missed that staff meeting. Last night I’d emailed the professor in charge of our course and let her know I might not make it. I have 4 different messages and about 10 emails about what I missed. I guess that’s not too bad for having been out of contact for half a day.

3:30 pm – I’ve been trying to play catch-up. I’ve had a shower and taken at least the allergy meds that I missed taking at breakfast. I’ve been flaring even with them, and once when I missed a day of allergy medications I went into anaphylaxis later that day. (Right now, we (meaning my medical teams and I) don’t really know what causes my anaphylaxis. So. Allergy meds it is, to try to tamp down what is obviously an allergic reaction that had me get bumpy hives on my legs during the shower.) I’ve contacted the other TA and tried to sort out from the mess of emails what happened this morning and what I need to try to do. Somehow three different students with three different problems have gotten conflated into one being in the professor’s mind, and I dash off a few new emails and forward old ones to try to sort out that problem. Now I’m on hold trying to handle the next item of business … why did I have light trails to play with at 3:30 in the morning? The hold music is… actually not that bad. 🙂 And here I said I’d be whinging about it.

6:00 pm – I would be fuming out my ears if they weren’t so congested! I thought, light trails. New symptom. For new symptoms, you’re supposed to call “your doctor.” I don’t know which doctor to call, so I’ll run it by primary care first. As a student, my “primary care” comes through the university student health services (or as I lovingly call them, the “docs in a box.” They’re working from trailers while their building is being renovated). As a more complicated case, after a long battle, I was assigned to one doctor in particular for everything not urgent. First, though, I have to navigate the normal system. The clinical staff member who answered the phone isn’t someone I know, and when I explained I had been seeing light trails and needed to know what was going on and who to follow up with, she started using the Socratic method of questioning. #whenineducation

Nurse: “Well, what do you think you need to do?” Me: “Um, I was sort of hoping you guys would be able to help me figure that out. Do I need to call cardiology, neurology, or make a student health appointment? What should I do if it comes back?” Nurse: “Well, which one would you like to follow up with, cardiology or neurology?” Me: “….  That’s what I was hoping you could tell me.” We eventually decide to start with an appointment at student health. And they have no idea about the drug ivabradine, are not going to look it up, and have zero clues about anything. She’s happy to transfer me to the appointment scheduling line.

On the appointment line: “So what is the reason for your visit?” Me: “I had light trails and after-images. When I moved my arm, it had an image that lingered and followed after, trailing …. like what you see in a superhero movie where someone is running really fast.” Scheduler: “What?” Me: “I know, weird huh!?!” Scheduler: “Like what happened again?” Me: “Oh.” I repeat it, then explain a few different ways, bring up that I’m not sure whether it’s a drug reaction or a new migraine symptom, and wait. Scheduler: “Ok, so I’ll put down the reason for your visit as “headache.” Me: “No! It’s not a headache. It might be caused by one, but I don’t know. I’m seeing after-images of things when they move.” Scheduler, still trying hard: “So vision problems… like eye pain?” Me: (giving up) “more like hallucinations. It’s not hallucinations – these are real things – but hallucinations is the closest.” There’s silence. I don’t know what it is the poor doctor tomorrow thinks she’s seeing me for, but I do have an appointment tomorrow.

So much for this being a doctor’s appointment free week.

I also called and left messages at both cardiologists too, because I figure that’s where I’ll end up anyway. Might as well get a jump on it while I’m on the lines.

A call to the UPS store to arrange for them to hold a package for longer until I know I can drive safely to pick it up. I call the place that was supposed to work on my car tomorrow too. By now I’m relieved that it’s close of business and I’ve finished the phone calls, but my email had been relentlessly dinging the entire time. I have a complete new stack of marching orders from my professor. The syllabus is getting rearranged, discussion sections turned into class lectures (but delivered by the TAs), and (of course) the professor and I don’t see eye to eye about some classroom and grading issues. I know as soon as she makes a change, I’ll be hit by responses from the other side of this equation – the students. I’ve been off Ivabradine for about 24 hours, and my heart rate is already starting to fluctuate. Or it’s just stress and ire, this time. Normally it’s not so much of a problem, but I’ve spent a lot of time this week trying to correct errors.

I’m going for a walk.

10:00 pm: I had a nice walk. I talked to my mom, and she was a fount of wisdom about how to deal with my dilemmas as a TA. I talked to my sister, and she was sympathetic. I watched the sky streak, this time in the normal way, with the beautiful colors of sunset. I managed over a mile, and if some of it was spent leaning against lights waiting for them to change or railings, or if I staggered at the end like a drunk, what of it? I know the Ivabradine is still helping, because I didn’t get over 120 bpm, or at least not by much. I’m eating Cream of Rice for dinner. I tried Fritos earlier, and while it helped me regain my equilibrium after the walk, I also noticed I had a splotchy rash beginning. I really hope I’m not losing corn as a safe food. My desire to be a good TA has been pretty well squashed for the day … and my conscience tells me that I wouldn’t be a good TA right now. So I’m going to cue up a TV show and load my med containers with the 23 different types of drugs and vitamins I have to take in order to do what I did today – get up at the crack of noon, deal with people coherently, feed and clothe myself, and walk a mile. Disappointingly, for someone with dysautonomia, that’s actually doing pretty well.

If you’re well and reading this, you might try pestering your senators and congressmen or congresswomen about not cutting funding for research for rare diseases or finding a cure for dysautonomia.




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