Music, comics, art, and other stuff, all in one gigantic pile. The web of yesterday, tomorrow!
I find this video incredibly relatable. I’ve not been formally diagnosed with any version of EDS but I definitely have some sort of hypermobility disorder, and it’s definitely related to my fibromyalgia diagnosis. Everything she shares in her story is super relatable. Including the specific experiences with physiotherapists and being doubted by every doctor, and everyone blaming me being “out of shape” or having a “weak core.”
So yeah I’m deep in a pain flareup right now. I made sure that all of the critical bugs in bandcrash are, to my knowledge, fixed, but I just am not in a situation where I can really work on stuff right now due to a massive pain flareup.
I was just starting to work on some music for a game jam game and Novembeat but I don’t think that’s really in the cards for me this year.
And of course now that I’m in agony, suddenly a lot of folks want to interview me for engineering roles that I’d normally be very interested in, so, thanks for twisting the knife on that one.
At least choir is going pretty well and gives me stuff to look forward to.
Do people ever read these things? Or do people just like knowing that I’m still alive? Either way here’s a “I’m still alive” post.
I have two major comic series that I’d like to get back to:
So, these two series are very dear to my heart and both of them have been on hiatus for a while. I would like them to not be on hiatus.
So, yesterday I had my 6-month followup with the cardiologist regarding the heart-related stuff and got the usual litany of obnoxious hand-wringing around my labs (evne though they were now very out-of-date) and yet another lecture about lipids and triglycerides, which, yes, this is why I am seeing you. Meh.
Anyway, the upshot of this is that he did order new labs for me (which I have no issue with, of course, just with how he talked about ordering them), and this morning I figured I’d go get them done. And before doing them I figured I’d use my OTC blood glucose meter to get an idea of what to expect with the blood sugar results.
It came back with 296 mg/dL.
That is… high.
Ah yes, lots of frustrating stuff happening all at once, so much so that I’ve wrapped around to not caring about any of it.
For the last few months I’ve been feeling restless to be doing not-much throughout the day, so I’ve been actively looking for a job. No bites have been occurring. So instead I’ve been working hard on new projects, like the VRChat avatar stuff and also redesigning my website (which I’m close to being able to roll out, incidentally).
But then it turns out that doing work makes my chronic pain flare up again, and now I’m in agony again.
So, I guess I need to find something that makes me feel satisfied with my day (and ideally brings in some amount of income) without being something that my body just absolutely rejects. But what could that possibly be? The stuff I’m good at and the stuff I enjoy doing is stuff that physically hurts to do.
Today I had a followup appointment with the cardiologist following the incident. He said that most of the lab results from the ER were good, but there’s a slight concern from my EKG, and of course he’s concerned about my high cholesterol and triglycerides (as well as borderline A1C), as well as with my family history.
For diagnostics, he’s having me do a treadmill stress test in a couple weeks, and also get an echocardiogram to measure the thing the EKG indicated as a potential issue.
For cholesterol and triglycerides, I told him about my history with statins and fenofibrate causing massive systemic pain problems and muscle failure symptoms, so he’s putting me on Repatha, which is a rather interesting treatment option that involves a biweekly injection of monoclonal antibodies, and which shouldn’t have any bad health effects.
There are so many things I’d like to be doing with my time, except every time I start on any of them I get a major pain flareup. And that makes it really hard to get into what I’m doing, and then the moment I have any minor setback (such as a problem with the tool I’m using) that just makes the pain explode even further and then all I can focus on is how much I’m hurting.
I’d love to be making 3D models for VRChat or drawing comics or making music, but all of those things just feel so inaccessible to me right now. And even playing games hurts, and even hanging out in VRChat can be pretty painful too because even standing up for an hour at a time is awful (and doing VRChat while sitting down has its own share of issues).
I’m grateful that I don’t have to worry about money so much, but gosh, there’s more to being productive than making a living. Quality of life is important and that feels just so lacking right now.
I just feel like so much stuff is locked inside my head and screaming to get out, and I sure wish I could just like. Not be like that.
So, in the past, the “Simply Cheetos” brand of Cheetos didn’t use monosodium glutamate in it, so it was a safe thing for me to eat.
Today when buying lunch at the grocery store, I saw that they had the Flamin' Hot Simply Cheetos, so I bought a bag, and did a cursory glance of the ingredients list and didn’t see MSG on them. Then I had a bunch with dinner, and noticed a rather strong umami flavor (but not the same one that I normally associate with MSG), and paid it no mind.
Later in the evening I started having a really bad bowel reaction to something and started looking at the ingredients listings of everything I ate today to see what it could be, and that’s when I noticed MSG on the Cheetos label.
However, I don’t think it was the Cheetos' MSG that did this! In fact I think I might actually no longer be MSG-sensitive. And looking back, I don’t think I’ve had an MSG reaction ever since I did the ketamine treatments in March (even though I’ve knowingly had MSG a few times since then). There have been a whole lot of unexpected neurological changes that did happen from the ketamine infusions; in particular, ever since those treatments, caffeine doesn’t give me a massive panic attack when I have as little as half of an espresso (I can now tolerate a large Mountain Dew with just a slightly elevated heart rate!), and sucralose doesn’t give me a headache anymore either, and alcohol doesn’t make my pain flare up either.
All of those food sensitivities are highly co-occurrent with people with fibromyalgia, which was the main thing I was trying to treat with ketamine. While the chronic pain and fatigue symptoms haven’t gone away (and those were the main things I was trying to treat!) it’s possible that ketamine at least did have some beneficial effect.
I’m still not going to rush out and like. Consume all the MSG, just as I don’t rush out and consume all the sucralose/Stevia/etc. either and still prefer decaffeinated beverages for a bunch of reasons (although it’s nice being able to self-medicate my ADHD again!) and still limit my alcohol consumption, but maybe I don’t need to worry about those causing unexpected problems anymore.
Anyway. All this is to say that I still absolutely believe that MSG sensitivity is a thing (based on my prior experiences) but also it might be possible to get away from it! I’m not sure undergoing expensive ketamine treatments is worth it for this effect alone, but it might be a nice side-effect for folks who are seeking it for other reasons.
