Warning: this post contains tangents and rambles. It is a work in progress, but I”m impatient to get at least something out.
Somehow, I am due for several kinds of doctor visits all at the same time. I don’t have a dentist, eye doctor, or primary care physician up here yet, despite having moved to the Boston area almost a year ago. I’ve also been looking for a sleep specialist in the Boston area for the last few weeks, and have finally, finally managed to actually schedule an appointment. In addition to my own doctor search, my very best friends (and now roommates!) have been working tirelessly on a website that will (very soon) be a comprehensive guide to healthcare for trans/genderqueer people worldwide. And, as everyone who is paying even the tiniest bit of attention to things that are happening in this country, healthcare is kind of the buzzword of the moment.
I have been thinking a lot about healthcare lately.
I have also been thinking a lot about narcolepsy.
Narcolepsy has been part of my life since I was fifteen. That was the year I first started having symptoms, though it took me some time to connect the dots. I was a sophomore in high school, the school year had just started, and I was suddenly very, very tired sometimes. Overwhelmingly, must-put-down-what-I-am-doing-and-sleep-NOW tired, but only some of the time. Which then became most of the time. I started to fall asleep in class. I managed to fall asleep onstage during a production of ‘A Midsummer Night’s Dream’. I got pretty good at pretending to be awake while I was actually asleep (or at least I thought I was good at it).
After a few months of this, I went to a doctor. He was an allergist/pulmonologist, not a sleep specialist, but I was referred to him because my PCP thought that maybe this was the result of an allergy to the cat my family had just gotten. Maybe allergies kept me up at night, and therefore I was too exhausted to stay awake all day. Except that the allergy tests that this new doctor ran concluded that I was not allergic to cats or anything else, except for mold, a little bit. His solution was to suggest that I try to stay awake as late as possible each night, so that maybe I’d be tired enough to sleep through the night.
It didn’t work. After about a week of sitting at the kitchen table after dinner and homework, playing game after game of Monopoly and Trivial Pursuit with my mom, until I started to beg her to let me go to bed, please, even for just a few minutes. And so we gave up. And the new doctor told us that if I wasn’t willing to try hard enough to stay awake, then he probably couldn’t help me. And that sometimes problems like this turned out to be rooted in psychological issues. So clearly, it was my fault that I couldn’t stay awake.
Anyway, long story short, the next six months were borderline hellish at times, and just ok the rest of the time. Then, one day, I was on the internets (o internets), and a small box on msn.com’s home page caught my eye. It was a quiz called ‘Could You Have a Sleep Disorder?’ So I took it. And, lo and behold, I had all four of the most common symptoms of narcolepsey. Hmm. I mentioned this to my pediatricial at my next appointment, a few days later. And she admitted that she knew next to nothing about narcolepsy (yay for doctors who will admit they don’t know!), but that a new sleep specialist had just opened up a practice in our area, and that she could refer me to him. And she did. And he (new specialist) did what someone should have done six months before; get me to a hospital and have a sleep study done. Duh. Conclusion: I have narcolepsy. Not only am I narcoleptic, but I’m a rare narcoleptic: I have all four of the main symptoms of narcolepsy. (They are, for those who are curious: excessive daytime sleepiness, cataplexy, sleep paralysis, and dreamlike hallucinations. And yes, I am somewhat proud of being rare).
So I was put on medication that helped me stay awake, and I kept seeing my sleep specialist, who is the most hilariously fabulous man ever, even after I moved to Massachusetts and had to travel in excess of four hours each way for my twenty minute visits with him. Until now. I haven’t seen him since April, and at each visit he can only prescribe three months’ worth of meds (because I take a controlled substance, and there are rules about such things), and so as of Tuesday, I have been off of my meds for a month. This is longer than I have ever been drug-free before, and to be honest, it has been difficult. I had gotten used to not having to worry about whether I’d feel too sleepy at work to do my job effecctively without caffeine. I estimate that I have ingested more caffeine this past month than I had in my first ten years of life. I have been grouchy and irritable and sleepy and narcoleptic all month long, and I am so ready for it to end.
(a note: I fell asleep at least six times while writing this post)