Disease Fatigue

I am tired of being tired. I am sick of being sick.

No, there was never a time when I was the opposite – happy and well-rested to be sick!

But the waves of soul-crushing weariness are worse than the ever-present niggle in the back of my mind that says “I am not okay with this situation.” This is not the physical fatigue, in its many different flavors, that comes from my diagnoses. This is a different beast.

  • I’m tired of medical paperwork, of sitting amid white drifting dunes of medical paperwork and sobbing a salty sea.
  • I’m tired of flaking out on friends because my body is flaking out on me, of feeling my hard-won “adult” reliability splintering away, mica under pressure.
  • I’m tired of drawers full of medicine; the half-sob, half-laugh and sick feeling in my stomach when I realize I use pill containers designed to last a week for a single day and they’re not quite cutting it anymore.
  • I’m tired of getting emails from doctor’s offices, because it happens so often that when the notification chime dings I’m starting to jump because it means one more thing
  • I’m tired of phone calls to doctors: I’ve heard the hold music so often for one hospital I can improvise a vocal obbligato over the top, and then cry because I can.
  • I’m tired of the adrenaline jolt when the hospital’s extension appears on my phone’s screen, of feeling hope and fear so intense it robs me of thought, leaving me gasping on the end of the line.
  • I’m tired of managing med schedules, of 4th grade all over again and the problem about the wolf, the cabbage, and the goat crossing the river… except instead of the goat dying, I’ll get messed up instead. Med A must be 2 hours after Med B, and without food. Med C will react with Med B. Med D must be taken with food. You can’t eat unless you take Med B. … it is exhausting, physically devastating to miscalculate, and it happens many many times every single day.
  • I’m tired of physical therapy appointments, when I feel woefully inadequate and physically exhausted from the most basic of things.
  • I’m tired of doctor’s appointments. It’s the endless procession of scrawled blocks of green on a calendar or reminder alarms the day before, reminding me yet again that I am ill . . . as if I could ever fully forget. It is crying from the continual fight to get to those appointments, and the hope they bring of a solution, and the despair when they don’t. And finally, the black hopelessness when the appointments dwindle from a flood to a stream to a trickle and you are left alone in the same fight.
  • I’ve very tired of tests, of calling a friend yet again for a ride, because you’ll be to ill to take care of it yourself… and calling another, when that first choice is busy with their own life, and then a third.
  • I am so extremely tired of hospitals. It’s quaking terror disguised with a grin and a selfie of patterned gowns and lights and monitors and cuffs and questions.
  • I am tired of having to think about where I am going to stop and rest. There is a profound mental, physical, and emotional exhaustion from simply taking a shower or grocery shopping, and knowing I should be grateful for still being able to do even those little things with perhaps some adaptations. And then crying when I don’t feel very grateful, because I want so very desperately to not even think about if whether or not I can make it across the store to get the milk I forgot on your first pass through. I continually map routes for how I will get from point A to point B; it’s Everests and Death Valleys and Northwest Passages all disguised as steps from the parking garage to the sidewalk, or a big cobblestoned hill wrapping a half mile to the next classroom.
  • I’m tired of reading medical research. It’s holding back the thought that n=me, and for every statistic that had this reaction, that did not respond to treatment, that had recurrence, this is me, a human, not a number… and fighting through because of knowing that if I’m not informed, I won’t be able to defend myself against the doctors who are uninformed, and if I don’t advocate for myself, I’ll end up even more sick or hurt than I already am.
  • I’m tired of feeling awful, of not being able to make it through an errant “Weight Watchers” commercial without grabbing for a bucket on a bad day.
  • I’m tired of hurting. It’s a spear made of ice, flickering with flame, plunging into me, as I smile at the girl telling me the elevators are only for staff, while I talk her through disabled student access and NO I DON’T HAVE TO TELL HER WHAT’S WRONG WITH ME TO TAKE AN ELEVATOR INSTEAD OF 6 FLIGHTS OF STAIRS. (And for the record, the next time I came in, she apologized and was very kind.)
  • I’m tired of not knowing. I have about 82% of my symptoms explained by diagnosis right now, with the feeling that could change to 0% at the whim of my body or a doctor the next day.
  • I’m tired of being scared of when the next bad thing will happen – when the next diagnosis comes, when the next crash will happen, when the next time allergic reaction hits, of the uncertainty of it all. It’s that feeling of dancing with the Grim Reaper, a slow, macabre waltz, whenever I risk eating a food I didn’t prepare myself, and even then — is this going to be the time anaphylaxis hits? Will I have enough time to counter it?

Disease fatigue. I heard it called that once, like generations ago there was “battle fatigue” (before the term PTSD/PTS replaced it). Disease fatigue, when the burden of sickness, quite apart from the real fatigue of a disease itself, is overwhelming.

In a strange way, the name itself gives me hope. Not the term itself, no — fatigue in the world of disability is not always, not even usually, something that goes away with rest. No, it’s the very act of naming that is important. Something named can be recognized, and have boundaries. Something named can be endured, and eventually, even if today I can’t actively battle, it can someday be fought.

And like most things named, it too shall pass.

 

 

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Thankful Like a Fairy

https://i0.wp.com/www.gutenberg.org/files/26999/26999-h/images/img-019.jpg

It’s that time of year here in the United States when little construction paper turkeys appear on fridges and people suddenly remember that pumpkin is edible. Thanksgiving often feels more like a breather in between the heavier loads of presentations and finals, usually with a side of grading. It’s the end of the term, and everyone is feeling a crunch that has little to do with frosty grass or fallen leaves underfoot. Periodically I see little flyers scattered around, all variations on themes about thankfulness, gratitude, and the like. I usually read them with some trepidation, my mind clouded by rubrics and inner debates about the ontology of musical meaning. Most often I feel that I don’t measure up on the thankfulness scale at the moment, and then all I’ll be is annoyed and guilty before my mind scutters back to the meta-musical-microcosm.

That’s because, I’ve concluded, I’m thankful like a fairy.

“Tink was not all bad: or, rather, she was all bad just now, but, on the other hand, sometimes she was all good. Fairies have to be one thing or the other, because being so small they unfortunately have room for one feeling only at a time. They are, however, allowed to change, only it must be a complete change.”
 ~ J. M. Barrie

When I’m thankful, it is an overwhelming flood of gratitude. One the flip side, when I am not thankful, I’m sometimes every dark emotion there is. It isn’t simply sniveling ingratitude, it can be an epic funk and a devaluation of my very existence. That is ungratefulness of the highest order.

However, fairies are allowed to change… and the musician in me insists that practice makes perfect. So here are some of the random wonky things a fairy brain is thankful for on a Monday:

  • Lyft! I’m running late, and for less than a day’s worth of university garage parking a wonderful clean car pulls up to my apartment door and then drops me off at the door to my building.
  • The fish faces my students, locked out of their classroom on the top floor, are making against the glass at me as I walk into the atrium 3 stories below.
  • The fact that the sound equipment and TV in my classroom worked … on the first try!
  • My butt. Sorry folks! Chronic illness can take unexpected tolls on weight, and in my case I lost a lot over the past couple years. If you have a job that requires a lot of sitting then you can imagine that not having much of one can be a little painful. Thanks to the discovery of King Size Fritos, bean dip, and allergen-free chocolate cookies, I’m working my way back to normal weight. It is great.
  • Trader Joe’s fish sticks and Simple Truth potato puffs (aka tater tots). Yes. It’s more borderline junk food, and I can eat it without having a reaction. I love being able to eat without an allergic reaction.
  • My advisor. We’ve had a bit of a chat about my medical conditions, finishing in a brief “how to administer epi” course. When I told him this morning that I was still struggling with the aftereffects of a recent ER-level bad reaction, I was let out of a weekly meeting and got to go home early and rest. I don’t know how this will play out, but today I am very grateful for that understanding.
  • The lighted brick path that sweeps past the hotel, lined with lights and ending in an impressive skyline backlit by a sunset that looks good enough to eat. OK. Maybe I was hungry today…?
  • The long conversation my busy exhausted mom gave to me so I could walk around this evening, enjoying the sunset, feeling safe and not so alone. Truly a marvelous gift. 🙂

 

Dysautonomia Week – Thursday

THURSDAY

7:00 am: – I wake up to the gentle beeping of my alarm and slowly, lazily crawl over to slap it off for another hour. It’s THURSDAY!! I don’t have any scheduled classes on Thursday, nothing to teach, and no scheduled jobs. This is different from not having work to do, some of it paid – but I can do it in another 3 hours, and it will be ok. I love Thursdays. I go back to sleep.

7:55 am: I get a call from the service department, letting me know about how long it will take for me to get my car fixed. It’s going to be cutting in close to my 2pm doctor’s appointment, but I don’t cancel. I’m still trying to wake up, to be honest.

9:00 am: I realize that I should have canceled, especially when I’m coughing so badly I can hardly breathe. I also have intercostal neuralgia and ribs that don’t stay in place very well, a side effect of a pretty intense ablation procedure and joint hypermobility/ HEDS syndrome. This means that coughing is really very … uncomfortable. Screw it. I call and cancel.

9:30 am: One of the cardiology offices got back to me! It’s a nurse covering for someone else at my new cardiology office, and they don’t have all the information they need. The nurse has never worked with patients like me on ivabradine before, so she gets the information and says they’ll get back to me. To be fair, ivabradine was initially approved for heart failure, though it’s proven very useful for treating other conditions like dysautonomia and IST. If it’s ivabradine causing the light trailing, I’ve got a dilemma. It’s been helping me a lot. This means right now I’m trying to figure out which one I need more – being able to see, or being able to stand?

1:45 pm: I didn’t get much work done this morning, unless you count blowing my nose as “work.” Another cardiology office returned my call. This nurse knew a little bit more about the drug, but she hadn’t heard of anyone having quite this reaction. She’d double check with the doctor once he was free, but it could be awhile. They were short-staffed, and at a trauma one research hospital there’s always more than enough to go around, even without people being out sick or on vacation. She was happy to hear I was following up with primary care. I walked up to the shuttle stop and sat on the sidewalk. The benches normally have a lot of trash around them and smell funny, and the grass is worse. The stop is right outside some of the mental health offices, and I can’t decide whether this is good or not. Does it mean a young woman with an Ikea backpack and a college shirt looks normal sitting cross-legged on the sidewalk, because “normal” is actually “just a little bit different than social standards”… or does it mean I just look slightly off with a reason for my being there? Actually, it doesn’t matter one whit. When my shuttle pulls up, I think the driver recognizes me, and she’s grinning. So was the little boy dancing as he waited for the city bus with his mother, and the guy who went and tentatively sat on one of the benches was smiling broadly at me too. I bet he wished he’d sat on the sidewalk. 🙂 It’s a nice ride in, and for once, I’m not going to be really late. And finally, on Thursday, I’ve managed to get my act together enough to ride the blasted shuttle in like I’m supposed to.

4:00 pm: I’m greeted with grins and a chorus of “hellos” at the student health center. (I’m strongly reminded now of one episode of “Speechless,” in which the dad realizes he has cred at the hospital in town.) The head nurse sticks her head around the door and barks out my name. I apologize as she takes my vitals for being sick, and she points out that wasn’t even what I came in for, though, was it? Headache? I feel a grimace stretch my face and I explain. She snorts. “Too many meds!” is her brief assessment, and I feel that she’s right. I also know that right now, those same medications are keeping me off the floor and thinking semi-coherently. Sort of.

It can take a very long time to find the right combination of medications at the right doses for dysautonomic conditions. This is not an uncommon experience. That I was diagnosed in less than 5 years and am having some luck finding doctors and medications is what is uncommon about this whole process.

When you consider that I also have some bizarre allergy issue that makes my body randomly declare jihad on foods or substances that were prevously a-ok, medications can get extremely complicated. I wear a MyID now, a sporty little rubber bracelet like those sold for various causes or given out at summer camps. It will let first responders know that me being on the floor is probably not a disaster, what medications I’m on, and which doctors they can now start to annoy with my blessing.

POTSie style: accupressure anti-nausea bracelet, medical ID band, and pink compression socks with butterflies (usually covered by slacks 🙂 )

The doctor is a wonderful but exhausted woman. She doesn’t have any prior knowledge of ivabradine, but knows some things to check for in the pharmacology. For a while it looks like migraines might be the winner. Then we find a few bizarre little phrases and trace them back through a research article or two. We gradually manage to stretch out the little side effect warning in the drug information pamphlet into something that resembles actionable intel. When I point out that as a heart failure medication it probably wasn’t tested in people like me – under the age of 50, not going through heart failure, normal ejection fraction, etc. – well, perhaps the 16% of patients who experience visual sparking means that in a different demographic the light phenomenon will be a little different. Maybe it will equal me, with ghostly arms following me around. There’s also a chance it will go away in about 2 months. Maybe. Maybe we can reduce the dose and titrate up without me losing a lot of ground, too. In the meantime, I have to wait until one of the cardiologists gets back to me and probably avoid driving at night. Possibly period. She also checks me out when she notices how bad my cold is and gives me a doctor’s note to get out of class tomorrow. She is well aware that I don’t have class in the normal sense of the word and that she is giving me an excuse to refuse to lecture tomorrow morning if called upon to do so, as well as anything else that comes up. By the end of our appointment, I was so hoarse I sounded like a frog that had been microwaved. I take the note. It doesn’t mean I have to use it.

I say goodbye to the gruff nurse, who is actually a fierce dear who literally saved my life once and hugged me joyfully when came in to say thank you a week later. Like you can ever just say thank you for something like that…. I wave to the desk staff and walk out with someone from student insurance, and we talk about that and about a new restaurant. The frog in my voice has now been battered, deep-fried and then toasted to perfection on some spent fuel rods.

12:45 am: I took some tests outside to grade along with two whole packs of Kleenex, but of course I didn’t get many done. I had a wonderful conversation with the med student who parks in front of my garage and pawned a bunch of slightly old Chinese food on him… I’d bought takeout over the weekend, and it turned out that I can’t eat that stuff anymore without really reacting. He’ll probably just toss it, because he’s smart, but it will save me the pain of doing it. I fix myself comfort food for dinner instead- tater tots and fish sticks. I found that the Organics potato puffs brand, while not as flavorful as others, technically doesn’t have anything in it I know I’m sensitive to, and Trader Joe’s has acceptable fish sticks. I can use the “Just Mayo” brand and some dill to make tartar sauce, as long as I don’t eat much of it. Carrot sticks and some almond-milk ice cream with frozen cherries, and I’ve had a return to the 5th grade. It’s lovely. I’ve talked to both my mom and my sister today. By the end of the evening, my voice sounds like a bulldozer trying to crank up in a gravel pit. I think it already squashed the frog flat.

I turn on the baseball game and listen to the Dodgers beat the Cubs to go to the World Series!! … while grading and sorting through paperwork and emails. I even hurriedly remember to phone in a bill payment. I check the online boards and find, in response to my hurried question earlier, that YES, Virginia, weird visual stuff does happen with ivabradine! And no, it might not be permanent! And I wouldn’t be the only one to decide that it’s worth it to go on taking it and sacrifice some night vision for a chance to live a little bit more of my life vertically.

I beg off taking roll and notes during the professor’s lecture tomorrow. The opera students will thank me for not giving them this cold before their next show starts this weekend. An “emergency” staff meeting has been called to talk about some assessment grading… I’m uncertain how it can suddenly be an emergency when we’ve had the these assessments (and had them mostly graded) for two weeks, but ok. Over the last few years, health crises of one type or another have redefined my already skewed sense of the word “emergency.” I spend a lot of my time in hospitals watching people very bravely, visibly, quietly not freak over things that are very freaky. In contrast, outside of hospitals I sometimes get to see people very dramatically, visibly, and loudly freak, usually over things that are surprisingly non-life threatening. Maybe it’s because it’s okay to freak about things that aren’t really important. Even though I should try to prep for that meeting, I’m more than spent and the thought of talking tomorrow has the same appeal as actually eating gravel.

Dysautonomia Week – Wednesday

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.

 

 

Dysautonomia Week – Tuesday

Gnocchi with smoked salmon in a garlic (lactose-free)-butter sauce

6:56a – I wake up before my alarm, again. Same routine of choking and hacking, thanks to this cold, except worse. I’ve gotten about 5 hours of sleep, I think. Way less than it feels like I need. I move to the alarm slowly this morning. HAH. One mistake less. This means I’m moving earlier. I even take a shower, turning the water up hot for a bit and sitting on the floor to enjoy it. Heat means vasodilation, the fancy term for my blood vessels opening up wide and letting gravity pull that oxygen-laden red stuff away from my brain to my toes, which really don’t need that much. Thanks to meds, it’s not bad this morning, and I’m sitting more from exhaustion than from graying out. I like this. This is good. Also, the water goes cold pretty fast. The hot water is free in my apartment. I think it’s the management’s way of making sure we don’t complain when it doesn’t last that long in the morning, because after all – it’s FREE!! By the time I finish steaming my sinuses, I’m feeling like I can manage class.

8:20a – I’m running late but that should be okay. The shuttles are staggered, and I’m near 3 different stops. I really don’t want to drive.

8:23a – I spent several minutes just staring at handy bus app. See, the shuttles here are on a “continuous loop” – there’s no set schedule. I can’t reliably think to myself each morning “the shuttle leaves at 8:13. And there’s another at 8:24 if I miss that one.” Instead we get this handy app that’s supposed to show the real-time location of the buses (hint: it doesn’t). The staggered looping schedule should mean that a bus is near me about every 15 minutes or so, but today all 3 are in a tight little clump. They’re not going to come my way for almost 30 minutes, and then it’s a good 15 minutes (depending on the route, a little longer) into campus. On Tuesdays a friend parks his car behind my garage. He’s left me his keys just for situations like this. I grab my gear and try to make sure I think. Slow is smooth, smooth is fast…

9:00 – I set up in a classroom I’ve only taught in 2 times before. There’s a table and a chair near the podium, and the classroom is small enough so I should be able to sit instead of stand. I yank and tug on cords in a manner that would make most IT folks cringe, until I can actually put my laptop on a corner of the table and stay seated for most of the class.

10:05 – I SURVIVED!!! I had to sing Home on the Range – very badly, with almost no voice – to my class, who didn’t know that piece. I taught mostly curled up in the chair, slugging tea, but for all that it didn’t go too horribly. The sound worked, as long as it was through the crappy projector speakers. (The other TA’s projector broke.) I played about 4 measures of a Bolcom rag, also very badly, standing up over a classroom upright piano. And yes, that piece of “tech” worked! I didn’t have the coordination to play standing up and stomp at the same time, unfortunately. Check out the piece if you have 5 minutes and 34 seconds to spare. I LOVE it! https://www.youtube.com/watch?v=MzorssRJce4

And now there is the after-teaching crash coming. The floor is so wobbly. It couldn’t be me. It must be the floor. In the bathroom I notice that my neck and chest are covered in bright red splotches, some of them starting to bump up a little. Oh. Well.

11:30a. Went home. Had to pay $7 to spring my car from the garage, because talking to people and a long line of cars trying to exit meant that I slid over into the next time bracket. Moved the cars around at my apartment again. I should just drive over to that pharmacy and pick up the meds and that binder, but I’m so tired. There’s no way that would be a good idea, or a safe one. Had Fritos for “breakfast” because even though I did have some time this morning, I was still feeling too sick to eat. Then I’m crawling into bed. I still have a few bright red splotches.

2:30p: Nap didn’t happen. Between a few phone calls, emails, canceling my evening jobs, and a package being delivered, there wasn’t a chance. I did get to lay down though, and that makes me feel instantly better. I also found out that one of my two Mighty articles was featured on their Facebook page!! I’m thrilled. I watched a bunch of movie trailers and videos of people doing amazing things with their bodies on American’s Got Talent while reading through a workout guide my new cardiologist gave me last week. I’m hoping the clips inspire me, and they do. I should be working out right now, but it seems like being sick is regarded as an okay reason not to work out according to the guide, and my body seems to agree. I get a phone call from the cardiology nurse: my meds are getting moved to the right pharmacy (yes, I have three different pharmacies to keep track of). I’m also supposed to go to the children’s hospital for some testing. And here I thought that this week was going to be chill.

6:30p: I’m outside, sitting on the asphalt in front of my garage, grading. There’s sun. It’s nice, but not really hot. I start to nod off over the last few tests. There’s birds singing, people going back and forth, and although I’m running low on Kleenex, this is great. I might make it through this bunch of grading after all!

9:38p: I’m so not going to make it. I went inside when it got cold and kept grading, but I just kept nodding off. I’m making some quick gnocchi for dinner because I feel bad about just eating Fritos and chocolate for the rest of the day (as I should). But I’m really not hungry. Cold, dysautonomia – take your pick. But food just isn’t what my body wants. It wants a sauna and someone to carry me around on a liter, dripping fruit-and-herb infused water into my mouth every 45 seconds, and cold meds I can actually take. I am trying to remind my body that I am not some romanticized Western idea of an exotic Persian princess from yore, or some such nonsense. I’m a grad student in hiking boots and neon green compression socks, and I have 8 papers to grade and my med containers to refill for the week before tomorrow at 10am. And that’s the timer for dinner.

1a: Going to stagger off towards bed. I’ll finish the other papers tomorrow morning, when hopefully it will go a little faster. I’m exhausted, but I only have to make it to 11:30 tomorrow morning. There’s nothing that pressing for Wednesday afternoon, although there’s certainly things that need to be done. Only 10 1/2 more hours, and I’m in the home stretch of the week. Something’s definitely triggered my allergic response, though – I keep breaking out into a flush/rash, and there’s blisters in my mouth. I usually get those with cooking oil (fries in soybean oil, or chips in sunflower/safflower oils, for instance), but I don’t know what I ate or did that could have triggered it this time. Maybe that’s just a sign of an exhausted brain instead of a new food trigger. My hope is for the “exhausted brain.”

I also Googled the test that I’ll be doing at the children’s hospital – the nurse actually told me to, in an attempt to figure out how much it would cost, so this wasn’t just a case of overcurious grad student. Among other things, it will test for cancer. Again. I really cannot count how many times I’ve been tested for cancer. I had to punch down that bubble of “freakout!!” that rose up blaring from inside me, but I’m practiced at it now, like a baker punching down bread dough after the first rising. I’m also exhausted. I might actually worry otherwise, so being completely limp from POTS, a cold, and fatigue really does have a silver lining.

Dysautonomia Awareness Month – A Week in the Life of POTS/VVS

INTRODUCTION: DAY 1

I faced a moral dilemma when I decided to write about dysautonomia awareness month. You see, whenever I look at a calendar, I’m struck by all the “XYZ” days we have. I have to try to keep track of staff appreciation day and crazy hat day, and then there’s breast cancer awareness month and rare disease day and a million others besides. This is of course in addition to the bizarre daily grind of life as a disabled graduate student — the never-ending stream of doctor’s appointments, staff meetings, and paper grading deadlines. After awhile, the sheer number of events that are supposed to be important actually does the opposite. They all run together in my mind and become indistinguishable, blurry, and meaningless.

As I stumble across the bumpy, hilly bricked main walkway on my campus, struggling to keep my balance on the uneven surface, I’m bombarded by shouts from a dozen different college groups. They want us to volunteer, to co-op, to donate money, or to simply wear a pin for the rest of the day about some issue about which I’m woefully ignorant. A lot of them are indeed for very worthy things. And sometimes I realize that I don’t care about them all, either – certainly less than half of them half as much as they deserve to quote dear Bilbo.

That is, of course, until it is my day, my week, my month. And all of a sudden, advocacy and awareness and attention-grabbing events all seem so much more important and urgent.

Hypocrite, my mind sneers at me. What sort of human being am I, that I so casually walk past a healthy, sugar-free bake sale to support the dentistry students going to Mexico to provide free dental care? Am I a horrible person because I don’t give a dollar and buy a treat (which I will probably be unable to eat and have to pawn off on someone else, but still!) Why am I such a hypocrite, that I think there are too many awareness days one minute, and then not enough one minute later?

The problem is information overload, emotional fatigue, and just sheer lack of time. It isn’t really that I don’t care, especially if I give myself a minute to think about it. I do very much care about dental care in Mexico, about pediatric cancer, and about the after-school music programs. I just can’t spend the emotional energy to empathize with it all, and I certainly can’t do something about everything. There isn’t enough of me. It isn’t hypocrisy when I don’t throw myself into every worthy project that begs for attention – it is simple self-preservation.

That still left me staring at the little turquoise ribbon and the words “Dysautonomia Month.”  This series is a result of that decision: that no, advocacy of one thing does not make you a hypocrite for ignoring the others. I can write about what I know. So for the next seven days, because I have far too little time and attention to last an entire month, and besides, it’s really not that interesting – I’m going to instead write about what each day is like living as a graduate student with dysautonomia (among other conditions).

I will also put up pictures of a some really amazing butterflies, too. I promise.

 

 

Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before I  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered, bent shell of a human due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags. (Ok, I sat off to one side while my sister waited in line. Have I mentioned she’s rather awesome?) The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats. There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. 🙂 After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very: people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of conversation. I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. 🙂

 

Eating on Vacation, part 2

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Victory came in the form of a golden brown oblong. Bread. Real bread.

Tests results and a trial elimination diet showed that gluten wasn’t my problem. However, milk and eggs provoked all kinds of symptoms. I was told that food intolerances could wax and wane. I also found out that dairy and uncoooked egg whites could be triggers for histamine release. We decided it would be best for me to avoid dairy and eggs for several more months. The only bread I could find quickly while I was at school was Energ-G’s line of allergy-friendly breads. Tapioca bread quickly became a favorite, especially toasted with almond butter.

Problem: on vacation, there wasn’t any Ener-G bread in any of the grocery stores in my rather more country hometown.

In flew my mom in a super-hero apron cape dusted with flour. She whipped up a batch of French bread without eggs or milk.

The recipe below calls for 1 tablespoon of butter. But you can substitute in a safe oil/ fat. We did one a version with olive oil and double the whole wheat. It was a little denser and more chewy than your typical French bread, but very tasty.  It bakes at a high temp and we also tried a version with all the butter, and thankfully it didn’t seem to trigger anything. This site has a lot of substitutions for baking that I’ve used before: https://delishably.com/dairy/Substitutes-for-Butter-in-Baking.

FRENCH BREAD

2 packages active dry yeast

2 1/2 cups warm water (105°-115° F)

1 tablespoon salt

1 tablespoon butter or margarine, melted*

7 cups all-purpose flour

2 tablespoons cornmeal

1 egg white and 1 tablespoon cold water, for egg wash*

Instructions: Dissolve yeast in warm water in warmed mixing bowl. Add salt, butter substitute, and flour. Attach bowl and dough hook to mixer, and mix/ knead on medium-low speed for about 3 minutes. Dough will be sticky.

Place dough in a greased bowl (olive oil or a non-dairy substitute like Earth-Balance is cool, just so it doesn’t stick). Turn to grease top. Cover. Let rise in a warm place, free from drafts, about 1 hour and/or until doubled in bulk.

Punch dough down and divide in half. Roll each half into a 12×15 inch rectangle. Roll dough tightly from longest side, tapering ends if you want. Place loaves on greased baking sheet that have been dusted with cornmeal (ditto greasing with a dairy substitute. I’m not allergic to corn but I imagine if it’s not a good idea for you but a slightly crunchy, gritty base is still desired, Cream of Rice cereal could work. We’ve run out of cornmeal and the bread came off the sheets just fine without anything but “butter.”)

Cover bread. Let rise in warm place with no drafts until doubled in bulk (about 1 hour).

With sharp knife, make 3-4 diagonal cuts on top of each loaf.

Bake at 450° F for 25-30 minutes. Remove from oven. If doing egg wash – which we skipped – beat egg white and water together with form and brush over top of each loaf; bake for 5 minutes longer. Bread will make a nice hollow knocking sound when done.

Remove from baking sheets and cool on wire racks.

Should yield ~ 30 slices, give or take.