Huh, it’s been a while since I’ve posted a blog entry. So let’s do some catch-up to the present, I guess.
I’ve been on guanfacine for about a month now, and I still haven’t stopped feeling drowsy and tired all day, to the point that I’ll often just fall asleep in the middle of things. Even when I’m doing things like grocery shopping I’ll suddenly feel really tired and need to take a couple moments to brace myself. It’s almost like it’s causing narcolepsy or something.
Last week I talked about this with my psychiatrist and we decided to try combination therapy with strattera, a stimulant-based med, since my ADHD responded well to the Adderall (aside from my blood pressure spiking badly).
So far, it hasn’t been helping at all. I’m getting the panic and anxiety from stimulants, while also being drowsy all day. What’s even worse is I’m also getting frequent muscle spasms, which is apparently a common reaction to some ADHD meds. And ironically, the treatment for that? Guanfacine.
So hey, I thought it was weird that nobody had been posting comments on my blog in a while. Turns out comments were just, like, broken, and nobody told me, for some reason.
The problem turned out to be that Isso currently doesn’t work on Python 3.8 (or at least, the current released version, which is ridiculously outdated, doesn’t), and it was easy to roll it back to Python 3.7, thanks to poetry’s pyenv integration. So, score another one for poetry.
But why don’t people actually tell me when they’re having problems with my site? Do people just assume that if something’s broken it’s broken on purpose? Because I mean… no?
Anyway, comments are fixed now.
I seem to be stuck in an annoying situation.
Short recap: I have both ADHD and fibromyalgia. These two conditions tend to have a lot of overlap (they are both thought to essentially be dopamine dysregulation issues), and both of them have a “let’s try different things out” treatment regimen.
Because of ADHD I have great difficulty in focusing on my work.
Because of fibromyalgia I have great difficulty in focusing on anything other than pain.
The medications which help me with fibromyalgia preclude me from being prescribed medications which help me with ADHD.
Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.
One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.
I’ve been trying to work on comics again, now that my pain is starting to subside. As part of that I’ve decided to try relearning how to draw comics, in some of the other art programs I’ve bought in an attempt to get myself off Photoshop.
It is not going well.
I have always been a night owl. Society in general shuns the night owl; waking up early is to be praised, you’re a go-getter, you’re proactive. Waking up late means you’re lazy, you’re irresponsible. Medicine is finally waking up1 to the reality that different people have different natural sleep cycles, and this is okay, but their way of describing this is by calling the late-shift folks “delayed sleep phase disorder.”
People who are trans are told they have gender identity disorder.
People whose brains process stimulus differently and have a tendency to hyperfocus on problem-solving are told they have attention deficit disorder.
These aspects are framed as being outliers, deviations from the norm, problems to be fixed.
All these things that are inherent to me are framed as being problems. Things to be ashamed of. Things to cure.
But they are the things that make me who I am, and which give me strength.
I was reading the article Advocating for a Compassionate UI from Rally Health, a tech company who runs a benefits portal for my insurance company. I was reading it specifically because I’ve had various accessibility issues with their website1 and I wanted to see what their thoughts were regarding accessibility.
For the past few days I’ve had some low-grade pain building up in my shoulder, just like it did in November 2017. Today it got excruciating. So I went to the hospital to get it checked out to make sure I wasn’t going to die of an embolism. I shared my medical history with this stuff (repeatedly) and the nurse and doctor focused on getting an embolism diagnosed.
That turned up negative. Which is great! But I’m still in excruciating pain. Which isn’t.
The doctor was dismissive of my pain. The nurse was too. She said that maybe knowing it’s not an embolism means I’ll feel better, and suggested the pain was just anxiety. But no, it is absolutely not just anxiety. Or just chronic pain. I’ve been dealing with chronic pain for over 20 years now. I know what chronic pain feels like. This ain’t it.
I wasn’t in excruciating agony while lying down, but as soon as they discharged me they were nowhere to be found. As soon as I sat up I was in agony but I couldn’t find anyone to talk to. I already had my discharge paperwork, and it was late at night, and I wasn’t dying, so, just toss me out onto the street, don’t even try to find a sling or something that’ll help me.
I did at least manage to get a prescription for some painkillers. Maybe that’ll help, but I got home well after the pharmacy closed.
I mean I’m glad I’m not dying and that this probably wasn’t because of the clot, but holy heck am I in agony right now.
Maybe I should have put on more of a show about how much pain I was in. After the past two decades I’ve gotten pretty good at powering through pain and not, like, screaming and crying. That doesn’t mean I’m not hurting, it just means I’ve gotten good at not showing it. I’ve always learned to minimize my pain. So people see my pain as not being “real.”
So, the latest issue with iTunes is that for whatever reason it’s stopped letting me actually play in a shuffle-from-library way. Which is to say, they got rid of the view where you can just see your whole library as the library, and click a “play” or “shuffle” button from there. I don’t know when it disappeared, but I know it used to be there, and now it isn’t.
It used to be that if you just had your view set to “albums” and pressed play anyway, it’d go ahead and choose something at random to play. But today it just kept on doing the same album: The Bends by Radiohead. Which is, granted, a great album, but I don’t know why it was choosing that one and that one alone, and I only felt like listening to it once, you know?