fluffy rambles (rant)

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to be that Isso currently doesn’t work on Python 3.8 (or at least, the current released version, which is ridiculously outdated, doesn’t), and it was easy to roll it back to Python 3.7, thanks to poetry’s pyenv integration.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.

Disordered.

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?

So my new 3D printer arrived today. I went with the Artillery Genius, since it seemingly had the best blend of features and physical characteristics.

So far I like it, although wow the out-of-box experience could be a lot better. Not from the printer so much as from the software that drives it.

It wouldn’t be a kitchen remodel without some major screw-up, right? Well today one finally happened.

Two things happened today of note:

1. My new audio interface (affiliate link) arrived
2. The demolition on my kitchen happened

Neither are things I really wanted to have to, y'know, spend this kind of money on right now, but they were both necessary. If badly-timed.

So simply disabling the Corel Update Helper wasn’t enough to get my machine back in reasonably working order; I couldn’t figure out what was causing CUH to relaunch periodically and simply disabling the LaunchAgent didn’t do that. So, I ended up deleting CUH entirely:

sudo rm -rf /Library/Preferences/com.corel.* /Library/LaunchAgents/com.corel*

and while I was at it, I uninstalled Corel Painter.

For the last few months, every now and then my foreground window will “blip” out of focus momentarily. This is slightly annoying whenever it happens, since that means that whatever I was doing gets disrupted. If I’m drawing a line, the line gets hecked up. If I’m typing text, letters get dropped. If I’m recording in Logic, my audio drops out for a couple seconds. You know, annoying.

I was searching high and low for what it might be, and in doing so I noticed that Karabiner-Elements (which I use to remap some of the keys on my non-remappable keyboards) has a window focus log (from the Karabiner menu choose Event Viewer then Frontmost application), which is intended to make it easier to tell the bundle name for per-app layout overrides.

Well, this is handy!

Yes, it sucks that the registry behind the .org gTLD has been sold to a for-profit corporation. But this article, and many others like it, keep on propagating a really messy misconception which I feel has done active harm:

The decision shocked the internet industry, not least because the .org registry has always been operated on a non-profit basis and has actively marketed itself as such. The suffix “org” on an internet address – and there are over 10 million of them – has become synonymous with non-profit organizations.

The Register is at least being careful to be technically correct¹ here, in that the registrar is non-profit and has “become synonymous” with non-profit organizations. But the .org gTLD was never intended to be for non-profit organizations. In the original RFC, the intention was that the gTLDs were:

• .gov: for government institutions
• .edu: for educational institutions
• .com: for commercial enterprises
• .mil: for military use
• .org: for everything else; the “org” was short for “organizational” as in “we don’t know where else to put it for now”

This was also when .net was created (despite not being in the RFC), referring to network services and infrastructure providers.

I love my Sodastream carbonator. But I don’t like how all of its soda syrups have “50% less sugar” by them replacing it with Stevia or sucralose. Yesterday at Target I saw that they had a new line of syrups that claimed to be made of just fruit juice, and I looked at the ingredients, and didn’t see anything problematic, so I bought some.

Just now I made a cup of soda with it, and at the first sip realized that they’d snuck Stevia in. I looked at the ingredients again, and there was at the very end, steviol glycosides – the distilled essence of what makes Stevia Stevia.

So, that’s $10 down the drain, literally.