Heart schmeart

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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.

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It sure would be nice to not be in pain all the time

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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.

MSG observation

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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.

Lack of VRChat build progress

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Recently a couple of folks have asked me if I’ve made any progress on my VRChat avatar, and no, I haven’t. There’s a bunch of reasons for that, but a big one is that I just don’t really feel like the amount of time/energy it’d take is worth it in the end.

In particular, VRChat’s avatar system requires a lot of fiddly work to go into it, and a lot of very hyper-domain-specific knowledge, because a lot of things in VRC are very shoddy hacks on top of the “expression” system which was clearly built for entirely different purposes than what it’s being used for.

The more I work on modifying the Winterpaw mouse for my needs, the more I learn about just how… weird VRC is, and given that the future of the platform itself is easy to doubt, I’d rather focus on building stuff that’s a bit more transferable between systems. So for now I’m just modifying the mouse.

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Exit stage left

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It’s time I sling the baskets off this overburdened horse
Sink my toes into the ground and set a different course
Cause if I were here and you were there
I’d meet you in between
And not until my dying day, confess what I have seen.

— Phish, The Horse

I’m finally doing something I should have done at least a decade ago: I am no longer going to try to be a software engineer professionally. I’m not sure what’s coming next, but hopefully it’ll be a much better life for me.

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Post-COVID fatigue

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So, I was worried about having “long COVID” and/or protracted amounts of fatigue after this, and, unfortunately, that’s come to pass. I had pretty bad fatigue leading up to the respiratory symptoms, but in this week since the worst of the cough subsided, it’s been even worse. I’m constantly tired and fatigued and I have a bad headache that just won’t go away, and I’m barely able to do things that I need to do, much less the things I want to do.

This past weekend I did end up assembling the drum kit like I said I would, and that took a lot out of me. I played the kit for a few minutes and it was more than I could really handle. Then I decided to work on some other music, and I could barely press down on the strings on my bass, and had to stop after just a couple minutes. I tried playing guitar instead, and that was just as bad.

And the next day my body felt like I’d run a marathon or something.

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Pain, fatigue, and focus

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Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.

I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.

Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.

Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.

He’s definitely a rare breed.

Ketamine 3.5

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Yesterday’s infusion left me feeling a lot more wobbly than usual today, but it was also a huge increase in dose. I ended up going to Taco Bell for lunch since it’s the only place within walking distance (EDIT: not actually the only place in walking distance but the quickest and easiest option for food near my home that I don’t have to prepare myself), and I decided to get a lunch combo, and in my haze I decided to make my drink Mountain Dew Baja Blast, which is rather high in caffeine.

So, on the minus side, I now have the strongest caffeine headache I’ve had in about 10 years when I first had to go cold turkey on it.

But on the plus side it’s just a caffeine headache, and not a panic attack!

I think this is evidence that the ketamine treatments are working, and maybe this means I’ll be able to go back on Adderall when this is all over with.

I don’t know if this has done anything for my chronic pain just yet, but those things are so interrelated anyway. So this is pretty promising in any case.

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