Things, present and future
A real smorgasbord of things to ramble about/catch up on.
Rambles that are fluffy, by fluffy
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.
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.
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.
It’s now been one week since the respiratory symptoms started on what I’m still about 98% certain is COVID-19, despite the lack of a positive test.
The worst of the respiratory symptoms only lasted a few days, with the cough having mostly cleared up by Wednesday. I’m still coughing somewhat, though, and I continue to be fatigued much more than usual for me.
Being vaxxed and boosted certainly helped a lot, but it wasn’t a complete preventative. Also given my fatigue levels I can’t help but worry about long COVID on top of my already deep-seated chronic issues.
I did feel well enough to go out for a little bit today, as I had a package which I had to bring to the post office to refuse (long story which will get its own blog entry eventually, maybe). I was only in the post office for maybe 30 seconds and I double-masked, of course. Afterwards I also popped into the grocery store (still double-masked) to get a snack.
Given my negative test results and my triple-vaccination status I’m apparently at very low risk of spreading it to anyone else, but given how “low risk” it was for me to get it in the first place I’m still being cautious. And of course I’m not exactly feeling up to being around people anyway. I might still make a regular grocery trip this weekend, though. As nice as getting them delivered was, I need to do things outside of the house just for my own sanity. Maybe I could do the curbside pickup thing. I dunno.
This weekend I plan on finally setting up my new drum kit, although that will also require a lot more organizing of my basement and that feels like maybe more than I can handle right now. I also want to play DDR again but that also feels impossible.
Maybe I’ll feel better tomorrow.
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?
Today I got a PCR test. It came back negative.
I’m still sick with something, though, and the symptoms are to the letter COVID symptoms. I wonder how trustworthy PCR tests are these days.
I seem to be sick again. I’m not quite sure what it is, but I was exposed to COVID quite a lot two weeks ago (confirmed exposure at the office, probable unreported exposure at the hotel, not to mention all the other places where people have gone totally lax with distancing and face covering because I guess everyone’s given up on everything now) and a two-week incubation time is still not unheard of. Tests come back negative but apparently the current variants have a huge false-negative rate on the at-home tests.
Basically I’ve had a persistent headache and extreme fatigue (like, way more than usual for me, which is saying a lot) for the last week or so, and now I have a painful cough and it hurts to breathe sometimes. Robitussin and albuterol are helping, and I have a stash of promethazine if it comes down to it.
(Gosh I wish the war on opioids didn’t make promethazine so hard to come by…)
Even if what I have isn’t COVID-19, so many people around me are still getting it. This pandemic is far from over and I wish people would keep taking it seriously, and I wish people had been taking it seriously to begin with. Maybe if everyone had done their part to stamp it out, we wouldn’t be in this mess right now.
It sure would also be nice if Pfizer et al had actually kept their mRNA up to date like they said they would, and if the rapid tests were updated to cover new variants as they emerge. And if fucking Bill Gates hadn’t convinced the US government and WHO to not require vaccine stockpiles to be shared globally, so that maybe the breeding grounds for new variants might have not been quite so effective.
This was not a time for half measures.
Stop me if you’ve heard this one…
Dextroamphetamine was working pretty well for me for a few days. Then last night I had some pretty bad insomnia accompanied with a major panic attack. So I think I’m going to hold off on it again and only using it 1-2 times a week, and not on adjacent days.
Why is my metabolism like this?
Probably for the best though; while on it I was getting super-productive again, and having pain flareups as a result. I need to find a good balancing point.
Fenofibrate is affecting me the same awful way that Lipitor did, back in the day. If triglycerides are the problem underlying my pain, this medication doesn’t seem to be the answer.
Maybe I should try just eating nothing but salad for a month.
Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.
I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.
Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.
Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.
He’s definitely a rare breed.
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.
I’ve always had issues where I’ll stop breathing in the middle of the night, but I don’t snore. Sometimes I wake up gasping for air. I’ve suspected central sleep apnea for a long time.
Several years ago I had an in-home sleep study, where they hooked up an SpO2 meter to me and recorded it overnight. There were a number of drops throughout the night, indicative of apnea in general, and as a result I was provided a CPAP machine (on the assumption that it was obstructive, rather than central, apnea).
The CPAP machine didn’t really help much (if at all) and I kept trying to make it work over the next few years. Then due to a change in insurance I needed to get another study to get authorized for continuing the prescription, and they said that the CPAP machine wasn’t helpful for whatever my sleep issue was. I ended up selling it on the used market.
But I was still having apnea issues, and a lack of restful sleep.
Over the past few weeks it’s gotten especially bad, and after someone was evangelizing the Oura ring, I looked into continuous monitoring solutions. I’ve had a cheap finger monitor for years, which has been helpful for spot-checking but is uncomfortable to wear to bed, and also doesn’t record a log, making it less useful for diagnosing issues.
Oura is pretty expensive (and now requires a $6/month subscription plan) and doesn’t do continuous SpO2 monitoring (it only does momentary checks, similar to the current Apple Watch), but perusing other reviews and half-remembering a few videos I’d seen years ago, I eventually came across the Wellue O2ring, which is a continuous monitor which logs SpO2, heart rate, and movement all night long, and can also send a little vibration to your finger whenever the SpO2 drops below a configurable threshold.