More Monarchs!

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It was a little breezy, but monarchs are pretty big and this one was determined.

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This monarch just hunkered down and angled into the wind, and kept right at the important stuff – getting to that sweet nectar.

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Here’s to October butterflies!

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Monarchs

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These are from the second week in October. I was so thrilled to find monarchs! Here they migrate south for the winter, and although they do have a flight in October it’s still pretty rare to get a good picture. The unusually warm weather for the first part of fall helped

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Monarchs live the longest of any butterfly in my area – up to 10 months.

 

 

 

“The Hunt for Red October Butterflies”

Or so my friend laughingly dubbed it. It was one of the most terrific weekend jaunts in recent memory.

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A few weeks ago we both, unbelievably, carved out some time from the hectic sprawl that was our lives. We decided to go to a park and take a walk… with our cameras! Squeal!!!! We gleefully charged up camera batteries, set up pickup times that we both were probably going to miss, and forgot various sundry and important things (or at least I did—my water bottle. If you have POTS and it’s a hot day, which it was, that’s just a bozo no-no, as my mom would have called it).

She’s an incredibly dear friend, knows my love of chasing butterflies with my camera, and as a fellow photographer is patient enough to wait for a minute… or twenty … while I slither around on the ground trying to adjust aperture and focal length and whatnot.

As a personal victory, I walked farther than I had in quite a long time, and we crossed this railway bridge!! First, I’m scared of heights. Truly, honestly scared. Second, there weren’t any railings or other things for me to grab. Third, it required stepping over the gaps onto each old tarry beam. Fourth, some of those beams were in pretty bad shape. Fifth, my sense of balance can be very bad, a side effect of POTS and having joint hypermobility. Basically, it means I’m a little bit closer to fainting than the average person at any given moment, and my joints wiggle just enough that my body has a hard time determining where it is in space. Thankfully, with the help of an insane number of drugs and a lot of work, it no longer feels like I’m walking across the deck of a ship in a storm. Instead it feels like I’m on a floating dock, or maybe a bowl of really stiff jello. It’s an improvement, but periodically the earth simply tries to shake me off. How does a POTSie cross the bridge, then? VERY slowly, with a friend holding on to her hand, bracing and providing a balance reference point, coaching her over the rough spots, showing her where (and in the case of the ones half eaten through, where not to!) step. I was laughing breathlessly from adrenaline and triumph every four steps.

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I did refuse to go back the same way.

And then, amazingly, right at the end of the walk, we found butterflies.

And it was one of the several recent gasps of hope amid the drowning flood that has been illness and school. It was pretty close to a real hike. There might be a reason to replace my hiking boots yet, and not just because they offer great support for wobbly ankles. Maybe I didn’t need to think that holding onto my hiking camera daypack was being selfish and fanciful of me, just yet. Maybe I’d eventually be able to walk for miles and miles again, like I had before.

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And all the maybes aside, I certainly had a simply fantastic day at a local park, chasing butterflies, tramping across bridges, counting the number of bridal parties all posing for shots around the gazebos and fountains, and talking with a friend. And that was joy itself.

Dysautonomia Week – Saturday

SATURDAY

I’ll be honest. I had thought about just blogging Monday-Friday, because that’s the school week. But Friday ended up being a depressing, horrible day. And then came Saturday, and there was hope.

8:00 am: I did reset the alarm. I needed it, because last night I kept waking up. I’ve learned to sleep through the whomp of helicopters and wail of sirens that comes from living near about 6 hospitals. Instead, I kept hearing weird snatches of music, the sound of an argument that abruptly got replaced by something else in a completely different tone … it took me a while to figure out that the next-door-neighbors were having a pretty low-key party (by 4 am, anyway), and were channel-surfing. Yep. Why I can sleep through fire engines but not a Broadway musical is the reason why I’m a musician and not a cop. Well, that and the non-functional state of my body and general lack of desire to be law enforcement, probably. 😉

11:45 am: I get a phone call from the compounding pharmacy that wakes me the rest of the way. Will I be coming in to get those meds? I tell them I will be today, although I don’t quite know how. Ghost-me has reached the stage where it’s only a few dust motes moving with a little more direction than can be completely random. It’s not a super-bright day, and when I’m not in a shadowy room or blinking at a computer screen, it’s all good.

Breakfast of POTSies

Breakfast of POTSies

12:15 pm: Deus ex machina. It’s a term from classical theater – classical meaning Greek and Roman. God from the machine. In opera, it is a plot device when, at the point when all seems lost, a god would descend in a great feat of stage machinery and set all to rights. For me, deus ex machina came in the form of a friend and her little 12 month old daughter, a text from the deacon of my local church, and another a little later from someone with space in their car who was going to church. The first text was the most unexpected and needed. A dear friend and her baby were going to Costco. Did I want to come along?

Costco, the big box store to end all big box stores, the perfect shopping destination if you’re looking at an uncertain length of time without the ability to drive. She’d even try to run me by the pharmacy first.

6:30 pm: The pharmacy, well, we missed it. But what did do was a huge shopping run through several stores, playing with her daughter the entire time. I hadn’t gotten to talk to people — really talk, face-to-face — for a while, and it was so very welcome. I wish I could be a better friend. I got to hold her kid, and for the first time in a long time I wasn’t really concerned if I could sit down immediately while holding her, because I didn’t feel like I was going to fall over right at that moment. Lights for both me and the little girl might have held a special fascination, but I walked all the way through Costco and Aldi! I was spent by the time we finished with Aldi, though. When I made it home, pulled off my sweatshirt, and had a chocolate square, my body revolted and broke out into a red rash/flush. A teeny bit of caffeine and some friction, that’s all it takes for a flare. Still. If I made it through COSTCO…!

12:30 am: I have a lousy one and a half papers left to grade, thanks to a blip in the online system. My editor wants an update on the last 10 pages of proofing I need to finish, and I still have a lecture to write for Monday morning. I have a bunch of tests to finish marking, and between us two TAs, we’ve found a few problems with the exam key/ exam itself.

I got up to get some water at one point and got really dizzy and sick. I didn’t gray out, but it was a little too close for comfort. Of course, I had been curled up under a heated pad, trying to ease the ache from shopping, playing, and coughing out my lungs for most of the week. Heat is not a POTSie’s friend. And I definitely didn’t drink enough. It makes me scared – perhaps I was running a bigger risk than I thought, when I jiggled my friend’s little girl? I didn’t think so, and nothing gave me any indication that I was in trouble. I also know that given a choice between either stopping this med and maybe needing a wheelchair to get through Costco, or not being able to drive for a few months at night but being able to cuddle a baby… well, I want to cuddle the baby.

I also have a ride to church on Sunday. Which would be today.

Dysautonomia Week – Friday

FRIDAY

7:00 am – The alarm is going off, and I can’t really remember why. I move to hit snooze, but that means breathing more, and that equals coughing. ouch. I hit the button a lot and curl up around myself to try to figure out what the alarm is supposed to mean again. The world is really blurry and spiky with light spears.

8:17 am – It’s not class, because I let the other TA know I still might appreciate someone else taking care of my rolls for me, and he, prince among teaching buds, says that’s no problem and he’s got it covered. It’s got to be the staff meeting, so I use a mix of squinting, guessing, and voice dictation to get the world’s most curt “not going to be there for the staff meeting” note to my boss. I’ll probably pay for that later, but maybe, I hope, not as much as just not showing up at all. Go back to sleep.

9:57 am – I wake up because I remember that the alarms are supposed to remind me when to take meds, so that I quit hurting and feeling so crappy and can sit up without falling over. I thought that, despite the blurriness and the starfire, I’d missed out on the afterimages, but when I reach for the little plastic case near my bed there’s more gold lines trailing off my fingers. Pixie dust! Thankfully I’ve already got my day’s worth of meds neatly sorted into a pill case that’s supposed to last a week, so I’m good even without being able to focus very well.

12:30 pm – I’m functional. I’ve got a few emails, none thankfully from my students wondering where I was for the 10am office hour I know realize I forgot to cancel. I still have shadow lines, but they’re lighter. I check my phone for missed calls from the doctor’s offices, hoping someone knows what I’m supposed to do, but no one has gotten back to me. One of the emails is from one of my bosses. I know it’s a typo but it still smarts when she writes she heard about my “continuous illness” and hopes I feel better. I get filled in on the staff meeting, where we all got told to do one thing only to have it reversed in another message an hour later. I email one of the docs to let them know that the afterimages were not, apparently, a one-time thing, but that means we’re probably on the right track with the ivabradine. I don’t bug the cardiology offices because they said they’d get back to me, and I’m not dying.

12:47 pm – I’m in the shower. I hadn’t taken any ivabradine today, and my feet turn purple with the first couple minutes of warm water. Shoot. When the phone rings, I scrabble for it, shower water and soap suds going everywhere. It’s an international number claiming to be VISA, offering some sort of reduction in my interest rates if I … I double check the number and click it off. I was hoping for a call from cardiology or something.

2:30 pm – I’ve managed not to go to sleep again after taking a shower, because showers are exhausting when my body has to work twice as hard to keep blood in my head when I’m shampooing. That’s going to be my main accomplishment for the day, though, it seems like. I’ve messaged a friend or two, trying to see if they’re going to be going grocery shopping or the like anytime soon. It’s not looking good. Quite a few are out of state. One or two I want to grab and shake with frustration when they say they can’t drive a few blocks, pick me up, and take me to the store a few blocks away. Less than 3 miles round trip. I can’t walk it, and thanks to homecoming this weekend none of the already greatly-reduced number of campus shuttles are going to be going to the grocery story. At least, I’m irritated at least at first until I remind myself that I don’t have to fight their battles. If they say they can’t go grocery shopping in the next week, they can’t. End of story.

I grabbed a late lunch and split a normal dose of ivabradine in half. It’s late, but it’s not like I’ve been waking up terribly early the past few days either, and I need to figure out ways to gently titrate. I’m sitting on the ground up at the shuttle stops, and this time around there’s no little kid to be thrilled that someone is down on his level. Bummer. I’m watching the progress of one of the shuttles I do think I want to catch when another pulls in. I take a moment to read the tag and decide it will do, but by the time I climb to my feet, the driver is already pulling away. Fastest stop on record. I settle back down and watch the shocked faces of the other students zip by. I think some of them might have shouted on my behalf if I’d run for the bus, but I’m just as incapable of that as I am of standing quickly. In the sunlight, at least there’s barely a flicker as ghost me sinks back to the sidewalk when I do. I have my timing down right to be on my feet when the next shuttle pulls in, and the drivers on this line know me better too. They wait while I get on.

At least I get to wear one of my favorite shirts. 🙂 I usually try to do both working out and napping.

3:00 pm – I’ve spent more than I’ll make in 2 weeks working my tutoring job in meds at the pharmacy. I’ve also gotten to say hello to the pharmacists, who are also really fun people. One of them does a double blink when I tell them about the afterimages. I should probably pick their brains a little bit more, but I’m going to be late for work and it doesn’t cross my mind.

5:05 pm – I just got locked in at work while I waited for my machine to shut down. Fortunately there’s no alarm on the place, so I just sign out and stroll right out the door. The only call I got the whole afternoon was from my sister. I feel bad knowing I’d have stepped out to talk to the cardiology office, but my sister will actually want to talk — and what’s more, so will I. 🙂 So I kept working. At least today, at this job, I barely had to talk to anyone and so I still have a voice.

A voice. Shoot. While I wait for the shuttle I hurriedly message the woman arranging the voice-overs for tomorrow. I’m supposed to help do a cast recording of a kid’s book. I wasn’t “hired” because of my ability to sound like a bulldozer or someone who chain-smoked — it’s a non-profit and a pet project, so maybe some of us would get some cookies and bottled water out of it. It would have been fun, though. I ask if she can still use me and they decide to keep me clear of the studio until I’m better. Everyone’s been terribly nice, and I’m disappointed because I really really wanted to do this project.

7:15 pm – The window for hearing back from the docs about what I should do or how longer this will last has definitely closed. Is this something I can just stop? Reduce? By how much? growl. I really wanted to take a nap when I came home, but instead I rebooted systems so the internet would work, drank stuff, and played a video game. It’s really hard to focus on work on Friday afternoon. I don’t really feel like cooking, and I remember that since medication schedules got shifted I didn’t take some of the stuff that would normally be helping me battle nausea. Whoops again. I take stuff. I stroll slowly up to a sandwich shop and get enough food to hopefully last through Saturday. I turn on TV shows, check my to-do list, and then start grimly doing something I think a lot of people who are chronically ill know all too well: I go through my lists of contacts and start writing emails, asking for help to get through the weekend and the next week.

I was really hoping to hear back from the cardiologists and be told that there was a quick solution. I still have the meds and binder to pick up across town, and I think I need to do that tomorrow, somehow. Then there’s all the normal flotsam and jetsam required to reset for another week. I have at least one doctor’s appointment next week too, which cranks up the complexity level. I might have to use Uber or Lyfte for a couple, but honestly I can’t even afford it once. I’m single. I don’t have family in the area. I have friends, but in this busy city my friends tend to stay busy. Mentally I start checking off the people that are going to be recording, rehearsing, running children to sports, or live so far in the wrong direction from where I’m going that I might as well ask if they’re up for a quick jaunt to the moon. I really hate this bit. I don’t like asking for help, I like to drive, and I like to set my own schedule (if only because I’m so lazy and my body is so out-of-whack, being reliable for someone else is pretty much impossible). I don’t like being a burden, and people who say that I’m not… well, they’re usually really kind people. Probably better people than I am, because at this point I’m very definitely a burden to me. Those people are who have the opportunity to say “aw, you’re not a burden” are also those who have said yes to helping me. I was usually too much of a burden for a lot of other people by that point.

11:30 pm – It took me the rest of the night to deal with those few small emails asking for help. It shouldn’t have. Perhaps I should have just done something else. I check flight prices back home for the holidays. I talked to my parents about it at one point and should have just booked it then, because now they’ve jumped so more. I’m also glad I didn’t book it then, because those plans assumed I’d be able to drive myself to the airport and back. That was never a guarantee, and now it’s even less of one. It’s hard to express this to a family whose memories involve me behind the yoke of a plane or throwing myself through the air onto a trapeze bar. By the time I’ve finished looking over the list of things I promised I’d have done by 5 pm today – even if it was only to myself that I’d promised – I could bawl.

Scorecard:

Days of POTS diary: 5
Major side effects: 1
Hours spent waiting to hear from the doctors who might know what’s up: 48
Classes/jobs/meetings/etc skipped: 7
Locked out: 0
Locked in: 1
Been physically sick: 1
Passed out: 0 🙂
Pages written on dissertation or comps: 0 😦
Pages of medical research read: … a lot.
Pages of grading done: …also a lot.
Lectures delivered: 2
Used rescue allergy meds: 3 times

I picked this week hoping that it would be a really good, positive one. One where I could take pictures of some of my favorite outfits and foods, show a little bit of the difficulty of living with dysautonomia, and talk about the need for more research. I was hoping it wouldn’t look like the diseases were winning. After all, I had new meds that were working, no doctor’s appointments for the first time in weeks, and a new workout routine to start. Instead, I haven’t written anything on my dissertation since August, when classes began. I’m working three jobs and that’s a few too many, but that’s the only way I’d have funding and be able to pay for meds and an apartment close enough to campus so I could make it to work on the days when I couldn’t drive. I don’t know who you think is winning. But to me, in this little game of grad student vs. dysautonomia, I’m not. I have 6 months of funding left to make a miracle happen.

It’s not going to.

I’m losing.

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 Week – Monday

This week I’m going to be doing something a little different I try to keep the things that I post at from being – while still personal – not exactly an online diary. I know if I do that, it will quickly descend into publicly whinging about things like hold music and how long I have to wait in line at the pharmacy. BUT… this month is Dysautonomia Awareness month, along with about a dozen other things. And so, in an effort to raise awareness, here is what a week is like as a graduate student with (among other things), postural orthostatic tachycardia syndrome and/or vasovagal syncope, a form of dysautonomia.

MONDAY:

Midnight: Monday actually just rolled over from Sunday. I’m still awake, curled into myself, after having been sick after dinner. I have to teach in about 8 hours. I have a bit of a cold. I’m debating sending my section over to the other TA’s, but we both have decently sized classes on Monday and that just isn’t fair. I’ll get about 5 hours of sleep before I have to wake up and make the call.

6:56: I wake up before the alarm because I rolled over and started to choke on all the accumulated post-nasal drip. Thank you, cold, at least I’m awake on time. I get up slowly, and then when the alarm’s 7 am blaring becomes annoying, give up and lunge across the bed to slap it off. I had to move the alarm clock out of arm’s reach because I’d turn it off in my sleep. But lunging is A Mistake. POTS means that my heart rate and blood pressure aren’t controlled well by my autonomic system: Instead of making sure that my blood pressure rises adequately, all of my blood drops to somewhere in my stomach and legs with that lunge and I get woozy and sick-feeling almost immediately as my heart starts to pound. I drop back onto the pillows and wait it out, then take meds. By 7:20, I’m ok again, and unfortunately that means I will have to teach, cold or no.

8:50a: I race out the door. I decided I’d drive myself instead of walking or even taking the shuttle in 48 degree weather, because I don’t feel good. The downside of driving myself is I really need to make sure I’ve eaten, taken meds, and am not a risk to my fellow drivers for the (yes, whole mile, so very far) drive to campus. By 8:50, I’ve cleaned up my PowerPoint from the previous night, printed my lecture notes, made breakfast, emailed a student, and phoned a doctor’s office about sending my prescription to the wrong pharmacy. I started to get dressed in “teacher clothes” and gave up, pulling on jeans and hiking boots and a warm sweater instead, because throwing up in a dry-clean only dress is misery squared. I’m also going to be late.

11:15a: I survived teaching, even though the sound system didn’t work. I also made my class laugh when I very noisily dragged the piano stool over from the grand and plunked it next to the podium. POTS also means that when I stand, my heart rate soars and eventually my blood pressure tanks. I’m on 2 different meds for POTS alone, try to make sure I walk or swim, and drink about 2-3 liters a day. My water reminder app, which has a happy little fish in a tank, is as a matter of fact reminding me that he’s thirsty right now. As a TA, though, I need to be visible as I teach in front of a class 2-4 times a week. Because I have to control the sound, lights, and a PowerPoint (virtually demanded by most instructors and students, and also saves me from having to stand to write on the board), I need to be at the podium with the controls. I’m too short to sit behind the podium and be seen, though. Joint hypermobility means that if I try to move the grand piano and replace it with a desk near enough to the podium so the cords reach my laptop, I’d slide my ribs out of alignment and damage my wrists. A stool would be nice, but when I asked the disability services office if they could help get me one they told me to ask my department directly. That means having to explain and ask for specific accommodations from the people responsible for writing me recommendation letters about whether or not I’m fit for a job. It would probably be just fine, but for now I’ll keep moving the bench. If I drag it I usually don’t get hurt, and most of the students seem to love that I’m this casual. I honestly don’t mind it either. As a former pianist, piano benches are… homey. After class, I had an office hour … my poor student (from a different section) walked in, looked horrified, and asked me if I was all right. I should have dressed up after all. I’m scaring the undergrads. ;P

11:33a – because I’m so busy, I logically stop and check FB and play a quiz that says, based on my outfit choices, I’m 38 years old and 5 ft 8 in tall. WRONG! It’s still sunny in my perch on top of another graduate student’s desk, so I play another one based on pizza choices. Except I can’t handle most of the high histamine or dairy foods that make a good pizza, so this quiz is especially funny. Also, supposedly I’m into geeks. (I do know enough IT professionals to know that many don’t like being called geeks. So maybe – even though it would be an allergen- free crust with beet sauce and almond -milk mozzarella topped with plain chicken pizza – an online quiz actually got something right). On to the next dozen things.

1p: leaving campus after talking to the very overworked student health insurance people. It’s October and they have just submitted everything formally to United Healthcare. Meanwhile, I’ve had countless doctor’s appointments, 2 procedures, and 2 ER visits (1 by ambulance) since my insurance switched over to the new plan on August 10th. I’m getting swamped with paperwork telling me my insurance doesn’t exist. The person in charge slumps in the seat next to me. They’re understaffed, and they were there working over the weekend. “It’s just when it will shatter, now. And I mean shatter, because it’s already broken,” the head of the office tells me. I feel for them. And then I’m wondering about what that’s going to mean for me… In the meantime, I have a lot of paperwork to file and I will have to beg to have all my insurance claims resubmitted. Being understaffed at this one point, this critical little joint in the pipeline of student healthcare, has just tripled everyone else’s work.

3p – I left campus and paid $10 to spring my car from the garage. I need to quit doing this. I need to be better. I don’t go home, because if I do, inertia will set in and I’ll never leave. Instead I get hot water from Starbucks in my Bubba Bottle (which I love) and take off to do errands. The first medical supply store has abdominal binders, the next step in compression garments that help squeeze various bits of my body in an attempt to keep my blood somewhere up near my brain. I have a prescription, but the store doesn’t bill my insurance company and has no idea what a “claim form for self-submission” is. I blend meds in the warm water, then slug it one-handed while playing an app. I go to stop 2, exchanging the wrong med I got last time for the right one. They don’t carry binders. I call a 3rd supply store and they have them in stock; although store 3 can’t bill my insurance either, they do know what form I’d need to self-submit a claim. I type this up sitting in the parking lot, on hold with the 4th store.

And…. store 4 has them! They’ll bill my insurance! And after my insurance has been billed, the claim processed, and payment sent, then they’ll call me and I can pick up my new accessory. I’m thinking of the mess over at the university’s student insurance office and mentally figuring that fall term will be over before I get that call. Supply Store 3 it is, on the other side of town, where I can submit the claim myself and maybe bypass a layer or two. I’ll have to front the cost, but at least I’ll have it in enough time to try it out. Oh well, I have to pick up compounded meds from there anyway. I’m now very glad that, for the first time in literally 6 weeks, I don’t have a doctor’s appointment this week, because otherwise I’d have no time for anything else at all.

4:30p. Just made it home. I dropped off mail (2 medical insurance forms and a hospital survey). I finally realized that even if food didn’t sound the best after having tossed my cookies two nights in a row, I needed some. I stopped by a Wendys and got fries with extra salt, Sprite, and decided to try chicken tenders. Yet another thing about POTS: I need salt to hold all that water I drink in my system and boost my blood volume. Given the insane amount I shake over everything, you’d think my blood pressure would be sky-high and my blood sodium levels out past Mars somewhere. They’re not usually. The chicken fingers are mediocre to sucky, and I break dietary guidelines to dunk then in ketchup. Worth it, I tell myself. I hit the bank. It’s another hour round trip before traffic to get the other meds and the binder, so that will have to be tomorrow. I’m done. The last couple miles of driving was actuate brutally hard. But I’m really pleased I made it this far.

6:50p. I need to grade, but the computer froze. It’s restarting. So am I. I made it home with enough time munch dark chocolate and to call the rental insurance company, who screwed up my insurance when I moved (and for a wonder, realized they had and wondered themselves how it happened). I then spend the next forever in the smallest room of my house, regretting my life choices. Ketchup and dark chocolate? Everything else? GI problems are an unfortunate part of life for many of us with dysautonomia, and I’m actually way better off than I was a year ago, and that in turn was still far far better than many with more severe forms.

8:00p – I’ve emailed one of my docs and thanked him for the trial of the new med that made today’s busyness possible – so far for me, Ivabradine seems to be working well. I made apple biscuits for dinner. Yes. A very healthy dinner. 😀 I wasn’t that hungry. There shouldn’t be anything in them I’m “allergic” too. Except my throat breaks out in red splotches and starts to feel tight with a bit of the dough and an apple slice or two.

11:30 pm. I’m calling it quits on the grading. I’ve done a few problem papers where writing careful comments is crucial, and I’ve watched two TV shows – I think. I don’t actually remember them; they were on while I baked and ate dinner and … dropped a class. Today a math class that I was actually rather proud of myself for taking bit the dust. I only needed to get to the point I had just reached, and I’m not taking it for a grade – it’s an undergraduate course and makes absolutely no difference right now. I just needed some help – about 8 weeks worth – to figure out some math for my dissertation. Still, I wanted to see it all the way through, and it would put me one class closer to being a medical researcher or a doctor, if I decided music history wasn’t for me. I’ve also eaten some of the cooked apple biscuits, hoping that when it was baked whatever the issue was with the raw dough would be gone.

No luck.

For the last 2-3 hours, my throat’s been weird, and I don’t think I can blame all of it on the cold. It hasn’t gotten worse, though, and I needed to grade, so I didn’t even bother with Benadryl. Now, I will. Also, the apple biscuits were pretty dang good. Maybe… maybe tomorrow I won’t be as sensitive to them.

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.