busybee: Entries for 2021/01 — 2023/03 (30)

I haven’t felt like blogging lately, but here’s some updates.

A real smorgasbord of things to ramble about/catch up on.

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.

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.

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.

Back in November of 2017 I had a pulmonary embolism, the result of a DVT which was the result of a combination of risk factors. At the time that it occurred, the insistence from the hematologist was that I’d have to cease the use of estradiol entirely, and this led to the worst month of physical and mental health that I can remember. I was basically going through menopause. A month later, a different hematologist said there was no reason I couldn’t keep taking estradiol, especially since I was on a course of warfarin to clear up remaining clot.

A couple years after that I had another minor DVT, and this led to needing to be on blood thinners, so now I take Xarelto daily, and likely will for the rest of my life.

So, be honest: do you know what kegels are?

Last night I found out that most people I know had never heard of them or, if they had, didn’t know what they were. They’re a pretty good thing to know about though!

In short: they’re a pelvic floor exercise. And they’re very worth doing.

I used to have pretty bad issues with GERD back in the day, which I ended up successfully treating through a change in diet and habits, namely not eating after 9 PM and pretty much eliminating mint from my diet (aside from the occasional treat). But lately I’ve been having GERD issues again, and for the past few days in particular have been waking up in the middle of the night with acid in my throat and, often, rather loud noises of bubbling through my body, which I assume are peristalsis with gas bubbles or something.

This has been pretty badly affecting my sleep and making my fatigue way, way worse than usual. Ugh.

Just a random check-in entry for folks to know what’s going on with me. Because that seems to be all that my blog is good for, all in all.

Since a couple folks have asked, I’m still the same as the other day, which is to say, tired, with a mild cough and pretty bad fatigue. I’m actually able to get some work done, though.

Also, yesterday I finally got a positive COVID test, although the T line was extremely faint. But at least now I know these tests aren’t completely worthless, even if it only told me what I already knew and well in retrospect.

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.

Wow, yesterday I wasn’t doing so good. So much so that I forgot to actually git push that last entry, whoops.

Anyway. I slept for about 12 hours, and woke up feeling somewhat better. My cough is mostly cleared up, and the headache and fatigue that’s been affecting me for the past week or so is mostly gone as well.

I still took it easy, and also out of an abundance of caution I took advantage of QFC’s grocery delivery service, which was a pretty decent experience. Not something I’d do normally and not a thing I intend to keep on doing, but, y'know. It was helpful in this circumstance.

My refrigerator is well-stocked, at least, although I still don’t have much of an appetite. I’ve mostly been subsisting on crackers, seltzer, and cranberry juice.

I continue to test negative on at-home rapid tests. Given the symptoms I was experiencing as well as the timeline I have a hard time believing it wasn’t COVID, though. I know the at-home rapid tests only register for a certain viral load (which is pretty high with the current variants), and I’ve heard rumblings that the primer used for PCR tests is also very outdated at this point as well.

I absolutely credit the vaccine with keeping me from getting worse, though, and if you haven’t been vaccinated at this point and are able to be, please reconsider. If I hadn’t been vaccinated this would have definitely gone much worse for me, and also, please try to stop the spread, y'know?

After the first few days with the ring I was finding my sleep to be pretty awful, and I was noticing that I was waking up quite frequently. Some of it seems to be due to apnea coming and going, but last night while just lying in bed totally awake I started getting “please move” vibrations even though I was definitely breathing, and the ring said my SpO₂ was a perfectly-healthy 98%.

But! My heart rate was dropping under 45, which was the configured notification for that.