Rambles that are fluffy, by fluffy
My big fibromyalgia flare seems to have finally subsided, so I’m back to working on music, yay.
Right now I’m working on recording “Sunny Again” for Transitions. The Transitions version has ended up being somewhat more complicated than I was expecting, so this will take a while to get finished. But I really like the arrangement that I have, and I hope that I can pull it off.
I’m having a bad pain flareup and as much as I’d like to push through it and do the concert anyway, from experience I know that’ll just make things worse and I’m trying to get better at self-care and showing myself the same understanding I show others.
So, tentatively I’m planning on my next VR concert being on September 29, at 9 PM Pacific time, hosted on my VRChat group. And of course it’ll be streamed over on my Owncast. Here’s a Discord event link.
The great thing about performing virtually is that I don’t have to worry about venue booking. I can make my own rules for this and I don’t have to feel bad about the reality of my health.
💜
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heart-related stuff and got the usual litany of obnoxious hand-wringing around my labs (evne though they were now very out-of-date) and yet another lecture about lipids and triglycerides, which, yes, this is why I am seeing you.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.
