Doctors, please listen

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I am in chronic pain. I have always been in some amount of pain. It’s become increasingly unbearable over the past 25 years. It’s not just all in my head.

I have always been overweight. I have always had high cholesterol. I have always had high triglycerides. No amount of chiding me about “diet” and “exercise” will change that. I am not lying to you about my dietary habits. I am not constantly shoveling down huge quantities of fast food. I exercise when I can, as much as I can. I mostly cook for myself, and I cook healthy foods.

The thing I eat the most of is salad!

There is probably a link between high triglycerides and fibromyalgia. There is a lot of evidence supporting that. But correlation is not causation. Given my lifestyle and dietary habits it seems unlikely that it’s the triglycerides causing the fibromyalgia. It’s probably the other way around, or there’s a common cause to both that has not yet been identified.

Treating me like a FUCKING CHILD WHO DOESN’T KNOW MY OWN BODY isn’t how to get me to feel better. Instead of just assuming that I don’t understand nutrition and don’t understand exercise and that I’m eating too much and drinking and smoking all the time, maybe. FUCKING. just FUCKING. LISTEN to me.

I promise that I am not lying about these things. I want to get better. It’s why I’m fucking coming to you.

While we’re at it, yes, I have sleep apnea of some sort, but three sleep studies have had conflicting results and either way, CPAP wasn’t helpful, and my most recent sleep study did not support the ongoing use of it. It wasn’t my choice to stop using it, it was AN ACTUAL FUCKING SLEEP DOCTOR who told me to stop using it and who stopped authorizing the refresh of the equipment. Which, you know. Requires a prescription. From a doctor. And I monitor my oxygen and heart rate most nights, and the metrics show that any breathing pauses are brief. And no I don’t want to be having them either! But chiding me for not using a CPAP that I’m not authorized to have isn’t. FUCKING. Helpful.

(And even if I did have obstructive apnea, most signs point to obstructive apnea causing weight gain, not the other way around.)

I am well aware that my lab results are troublesome. I am doing what I can. Don’t infantilize me and assume that I don’t understand that High Numbers Are Bad.

And yes I’ve tried statins and they just make me unable to move at all because of excruciating pain, and the same thing happened with fenofibrate. I’d be taking them if I could! I actually do want to get better! I am not making excuses! I am not being stubborn! It’s not like I have some sort of secret hatred of being on medication. Some people have a weird sense of pride about not taking meds, about seeing them as a failure. I don’t.

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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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Trying to ramp up

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Right now I seem to be in a situation where my brain is fired up about a whole bunch of different things, and I’m trying to figure out how to get myself actually working on any of it in a nontrivial capacity.

First, I was inspired to rewrite/flesh out the next little chunk of Lewi, and I’d like to get to drawing it.

Second, yesterday I had a great idea for a pair of VRChat avatars, which I have a lot of fun ideas for how to do them (especially with how the facial animation systems are going to work).

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Plans and Execution

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Once upon a time I used to be hyperproductive. I’d spend 8 or more hours a day writing code, then I’d go home and draw comics for hours, and then on the weekends I’d write and record music. I’d have pain symptoms as part of it but that just felt like a badge of honor, and that it’d all be worth it someday.

Now I can’t hold down a job at all, I can barely focus on any of those things, and even holding a pencil to start drawing just feels like too much. I have so many ideas in my head and so much shit I want to be doing with my time, but every time I start to work on anything it just hurts too much.

Anyway, I figured I’d talk about a bunch of the stuff I wish I could be working on right now.

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In defense of WebP

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Lately I’ve been seeing a lot of Discourse, especially on Tumblr and Cohost, about how awful webp is and how nobody should ever, ever use it.

You know what other file format I’ve seen this about?

PNG.

Yes, PNG, the beloved format that everyone can’t live without now and which is a constant “standard.” Which only came into existence after the web was a thing, and getting web stuff to support it was hard.

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Electric vehicles in 2023

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I’m a pretty unabashed fan of battery electric vehicles.

Well, I am slightly abashed in the fact that I feel like it’d be much better if mass transit were more accessible in more places, and even the most efficient BEV still has some pretty severe ecological issues associated with them (lithium refinement, impact of manufacturing the vehicle itself, parking space, road space, externalities of power production, etc.), but as a form of harm reduction in the society that we are stuck in within the vast majority of the continental US, they’re still way better than internal combustion engine cars, for those whose lifestyles require a car and can accommodate the (vanishing) limitations of a BEV. Even in areas where most electricity is generated by fossil fuels, the environmental impact of charging a BEV (with emissions generated in a centralized location) is much lower than the impact of carrying a little inefficient fossil fuel combustion source everywhere you go.

So, BEVs are an improvement. The thing is, the state of BEVs is pretty abysmal in general, at least in North America. In other parts of the world there’s some pretty compelling vehicles available (such as the MG4) but the US auto market is currently emphasizing large “crossover SUVs” and pickup trucks, and combined with the fascination of maximizing the car’s range, most BEVs coming out here are forced into a situation of having a gigantic battery, raising the overall vehicle price, and therefore meaning that every electric vehicle ends up being some ultra high-end luxury car.

Update (1/16/2023): Added some stuff about the Hyundai/Kia duality that I’d missed previously. Also a change of opinion on the EV6.

Update (3/31/2023): Chevrolet is making a very bad decision

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Reconditioning

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So, a few hours after I posted that last entry, I woke up in bed feeling a squeezing in my chest, pain in my jaw, and a few other heart attack symptoms. I got out of bed, did my best to calm my nerves, and called 911.

The EMTs evaluated me and said they didn’t see anything wrong offhand but my blood pressure was extremely elevated and with my medical history they felt that it would be best if I went to the ER. So, I let them convince me to go in the ambulance, which will probably cost me quite a lot.

At the hospital they did a bunch of work-ups, including blood tests for heart attack markers and a chest X-ray, and nothing turned up. Out of an abundance of caution they put me on an IV saline drip and gave me some aspirin in preparation for whatever other tests might have been necessary.

Within half an hour I was feeling totally fine, and my BP and heart rate returned to their usual levels.

So, I’m pretty sure I was just dehydrated.

I’m not looking forward to the bill, but I’m glad that I’m not dying. The ER nurse recommended that I convince my doctor to refer me to a cardiologist (like I’ve been wanting for quite some time anyway).

Anyway, I guess this is a good reminder to stay hydrated, gosh darnit. One can of seltzer and a decaf cappuccino per day isn’t enough to live on.

Deconditioning

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For the last few days I’ve been feeling anxious and having an elevated heart rate. That’s not just subjective, that’s what my heckin' Apple Watch has recorded. I keep on waking up in the middle of the night with a pounding heart, too. It’s hard to tell if it’s anxiety raising my heart rate or the other way around, but either way, something’s got to change.

The last few months I’ve been particularly sedentary due to a bunch of things (mostly chronic pain but also generally just feeling Meh and not wanting to do anything) and time has been slipping away from me very quickly.

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