Friday
Time for another tedious life and project update-ramble!
Goings-on etc.
Just farting my words into the ether, as usual.
Current medical status
Just a little checkin on what’s going on with me, because there feels like a lot of it.
Diagnostic dilemma
Okay, so, I’ve been having a lot more frustrating issues as of late:
- Whatever my connective tissue issue is, it’s getting way worse
- My kneecaps love to dislocate while I walk, and after 1.5 miles or so my knees start to give out under me
- My toes also love to either dislocate or weirdly cramp at random, which is quite painful, and getting them back in place is challenging
- My other joints (wrists, shoulders, TMJ, and sometimes elbows and ankles) are also in pain a lot of the time, and are possibly getting inflamed
- I’ve been having frequent bouts of vertigo (which are especially troubling when I’m driving)
- My tinnitus has gotten a lot worse recently
- Also my GERD is back, and my usual dietary measures to keep it at bay aren’t working
- I’m also getting occasional unexplained itchy rashes that flare up and subside after a few days
- And I am fatigued all. the damn. time.
Yesterday I had a doctor appointment to try to figure stuff out, and while the appointment itself was pretty unproductive due to the usual crap with modern healthcare practices, the doctor did at least run a lot of labwork for me, including checking autoimmune and inflammation factors and the most common connective tissue disorder markers. It all came back negative.
She did at least refer me to a rheumatologist, but I suspect the rheumatologist is just going to look at the labwork and say there’s nothing they can do for me. Most likely the answer is going to be the usual “diet and exercise,” when my diet is already pretty decent and I have difficulty doing exercise because of the very problems I’m complaning about.
The only thing that was even slightly out of the ordinary on the bloodwork was a borderline c-reactive protein, which indicates either systemic inflammation or coronary artery disease, and given that I’m a bit overweight I can guess which of the two the doctors are going to assume it is (especially without any other markers indicating underlying causes for inflammatory disease).
There’s got to be something causing all this but the state of the medical industry means that it’s unlikely that anyone I talk to in the medical field is going to come up with ideas on their own, they’re just going to tell me “diet and exercise” and to do BPPV exercises. During the Epley maneuver the vertigo does get way worse, but completing the maneuver doesn’t resolve it.
And of course none of this even comes close to addressing my joints not moving the way they’re supposed to. I love walking but I sure don’t like the feeling of my knee bending backwards when I do so. Nowadays I need knee braces and a cane whenever I go out, if I want to have any chance of making it home without being in agony. And never mind playing DDR.
It’s just, gosh. I wish someone out there also has these problems but also knows what the cause is so that I can find some hope of understanding what I can do to make things better. There is so much more I’d rather be doing than what I’m currently capable of.
February updates
Comic progress (or lack thereof)
I have two major comic series that I’d like to get back to:
- Unity (no relation to the game engine): a long-form science fiction thing about an interstellar colony ship that’s lost its history, with the initial story being that of one of its scientists who has lost their history
- Lewi: a young dragon is finding herself caught between the worlds of science and spirituality (and there’s also something much bigger going on in the background)
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.
Oh well, a well
I feel like I’m trapped in a gravity well and am having difficulty motivating myself to do anything at all. I’ve been sleeping way too much, and it isn’t actually helping with anything. I have a severe case of anhedonia when it comes to actually doing things I care about. I’m pretty much just hanging out at home with my cats and occasionally getting on VRChat and plinking away at the same trivial things I usually do, and I’m having trouble keeping up with my chores or my gardening. I’m barely getting out of the house except to go grocery shopping.
It sucks and I hate it.
The cycle
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.
Doctors, please listen
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.
Plans and Execution
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.