fluffy rambles (Fibromyalgia)

I’m still alive, I just haven’t had a lot to say I guess. At least not publicly.

Work is work. Lots of frustrations not worth getting into. I was at least managing to get some music done which felt good, and my pain was improving until it suddenly wasn’t, so it’ll still be some time before I can work on comics again. Which is a shame because I really want to work on both Lewi and Unity, gosh I have so much more story to tell on both of them…

I’ve been wanting to do an online concert in lieu of Song Fight! Live (which was canceled due to the pandemic) but I doubt I’ll be in any position to do that either, and my ideas for how to do an ersatz performance would take a lot more effort than I’m willing to put into it right now.

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.

Publ survived the load test. Will fluffy survive the ego test? Time will tell.

Anyway. Today I finally had my first appointment with the new rheumatologist. It went really well. I didn’t get any real new information, but at least this rheum is way friendlier and actually treats me like a human, rather than a pile of symptoms. Plus she actually listens to me and is interested in the things I’ve learned about fibromyalgia and so on.

Since my current meds aren’t doing enough for me, she offered two immediate possibilities, either switching the gabapentin with Lyrica (pregabalin), or supplementing it with Cymbalta. Both were things that the previous rheumatologist had suggested but I loathed working with him and never felt like going back¹.

I’m personally physically all right, at least for now. The house guest also made it here safely, right before things got really weird.

I gotta say, getting an urgent group text informing my building of an incoming teargas cloud and “Close your windows” is not a thing I thought I’d ever experience first-hand.

So, the update from yesterday is that I am now on anticoagulants again, and I am not terribly happy about it. On the plus side I’m on Xarelto which takes way less management than Warfarin, but on the minus side I am told that I likely need to be on them for a long time (at least a year, possibly forever) due to my prior clot history, and so far it’s been giving me a headache and I’m also constantly worried about, you know, bleeding out and dying.

I’m also still in considerable pain, both in my leg but also in my everything else, because this fibro flare just will not end. And I’m under a lot of stress right now, and I’m frustrated at a lot of things.

Pretty much all of the tech companies (mine included) have moved to a “work from home unless absolutely necessary” policy. We’re all suddenly getting into a remote-worker mindset — which I think is a long-term good thing, but it’s jarring. Looking out my dining room window I still see a typical amount of foot and car traffic for this time of day, but there’s an air of desperation and paranoia. Maybe I’m just projecting though.

My own symptoms have all but cleared up. I do have a persistent ache in my back and shoulders, which I’m not sure if it’s attributable to this mystery illness or is simply my fibromyalgia flaring up as always. My temperature is back to normal. I’m still coughing on occasion but it’s infrequent, and it’s gone from dry to productive. My shortness of breath is… well, still lurking, but doesn’t feel like an impairment at the moment. I’m still glad that I have a pretty strong reserve of albuterol, all the same.

So, in anticipation of my new job starting next week I’m trying to figure out what the right balance of medications should be for my various neurological issues, and I’m not sure where the balance point should be. I’m mostly thinking out loud here, but I am going to try to walk through it and maybe folks with more experience can comment, or something.

Back in 2015, I was a complete mess, and I did everything I could to hide it. I was still having panic attacks regularly, and they would be brought on by the slightest provocation. But I felt, working in tech, that I had to be quiet about it, and just let things pass and things would get better if I ignored them.

One day a coworker did a thing that triggered a pretty big panic attack. It wasn’t anything malicious on his part, just a cavalier, morbid joke in gestural form that happened to tread upon one of my biggest triggers.

I felt awful, and I wanted to keep from feeling that way again.

So I messaged him on our work chat, and told him that the gesture he made happens to be a huge trigger for me and I was having a pretty major panic attack as a result. And his response was incredibly helpful: he didn’t realize, he understood, and he wouldn’t do it again. And he stuck to that.

I’ve been on Adderall XR for a bit over a week now. It’s going pretty okay, except for the stuff that isn’t.

So, a new decade has started¹. Hopefully this next one will go a lot better than the last one.

I feel like it’s been a little while since my last checkin post so let’s do one now, I guess.

So, GeekGirlCon was yesterday and today, and for once I vended at it, having been put on the waitlist every time I’d applied for the last few years.

I already have quite a few thoughts about how things went and how they could have gone better for me, and my thoughts about my future as a potential convention vendor. Which is to say, I probably won’t be doing this again – but not because of anything wrong with GeekGirlCon. (Just to get that out of the way.)

Note that this isn’t my first time tabling at GGC, as I had previously done so with the Seattle Indies in 2017. But that was a completely different setup for a completely different intention – promoting games and the Indies organization.

So, this post about signs of undiagnosed ADHD showed up on one of my fibro communities and so much of it seemed PRETTY FAMILIAR, and I also found out that fibromyalgia and ADHD are highly comorbid, and then I was realizing that I stopped being able to focus on work and Getting Stuff Done when I had to go cold turkey on caffeine when my panic disorder started in 2011, and, wellp.

Just some brief updates for the goings-on.

Ugh, not only was the medication itself making me incredibly nauseous, but it was making me incredibly constipated, and I had my first death poop from hell since last December.