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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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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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.

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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