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Sick again

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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.

Ugh re: Dextroamphetamine

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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

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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.

Pain, fatigue, and focus

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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.

Sleep stuff, heart stuff, blood sugar blues

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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.

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Better sleep through technology

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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.

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Osteopathy

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Today I had an appointment with an osteopath, which is basically a chiropractor but with a basis in actual medicine instead of weird quackery. It was an… interesting experience. An overall positive one, though.

She mostly worked on my neck and shoulders, which are feeling somewhat better, and also popped a couple of my vertebrae, which was a strange experience, but a good one. I’m not sure if it’s placebo or what but I definitely feel a lot better now than I did this morning, at least.

She encouraged me to keep seeing my current massage therapist (who I’ve found very helpful) and to wait a few days to see how I feel before scheduling another appointment with her. Unfortunately she (like most medical practitioners) is ridiculously overbooked and the next available appointment isn’t until February (I’d actually booked this one around two months ago, incidentally) but right now I’m at least feeling very encouraged.

It definitely hasn’t cured my pain but it at least feels way more manageable now.

Health updates, mine and cat’s

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fluffy’s health

My new doctor has already proven himself to be way, way better than my last doctor. He’s really diving into my records and gathering insight to confirm my suspicion of hEDS. Meanwhile he’s put me on muscle relaxants “as needed” and I was taking them a couple hours before bed for a few days and started to feel a lot better. But I haven’t been taking them for the past few days, and I’m feeling worse. Go figure. So, muscle tension is definitely a factor, which I think goes along with hEDS? Like, reducing my muscle tension gives my shitty connective tissue a better chance to actually heal.

I also finally got an appointment with a new dentist. It’s towards the end of September (I really should have gotten on this sooner, as I’m due for a cleaning in, like, a week) but I’m really optimistic about the new dentist; her intake form is incredibly inclusive regarding gender stuff (with an open-ended selection for pronouns, and gender checkboxes that include non-binary!) and neurodivergent things (questions about a whole bunch of dentist-specific anxiety triggers to avoid, whether a blanket or weighted vest helps, whether it’s okay to be lectured about dental health, etc.). Also, she’s a PoC. I’ve never had a dentist who wasn’t a white dude before, and maybe that explains why it’s always felt like dentists don’t care about privilege or diversity or, y'know, taking care to make people feel comfortable.

Werner’s health

Little dude is definitely slipping away more and more each day. By the rubric he’s probably past the point where I should consider euthanasia, but he doesn’t seem to be in pain and he’s enjoying pets/skritches/sitting with me/eating (especially stealing my food) so for now I’m going to just let it ride.

If he starts expressing pain I’ll have to make a tough choice, but for now he’s basically just getting progressively drunker and sleepier all the time (except when food’s involved). I really hope he just drifts off one time and never wakes up (although every time I check up on him he ends up waking up and gets excited about the prospect of food).

He’s having trouble staying steady while standing or walking, and Fiona’s started to interpret this as him being a lost kitten. She tries to pick him up by the scruff, even though he’s nearly as big as her, and he has none of it. So Fiona gets pretty confused by this.

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Various updates

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fluffy health

So, I had a very bad experience with my doctor with this latest chronic pain flare (and the short-term disability leave situation), and with encouragement from my therapist I am switching to a different doctor. The doctor I’m switching to specializes in LGBT healthcare (and apparently 10% of his patients are trans) and also has a specific interest in treating chronic conditions, which is what I need.

I’ve also gone back to my self-determined physical therapy regimen. You know, the one that my GP and the pain doc and physical therapist she referred me to all think will cause more injury, even though it’s always helped me in the past. So far it feels like I’m actually making progress on recovery.

Said regimen:

  • Frequent powerball sessions
  • Upper-body stretching and partial chin-ups using a chin-up bar
  • Playing DDR (okay I haven’t resumed that yet but I’ll probably be starting that again soon, and I’ll be streaming it when I do)
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Werner updates

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Werner was unable to keep his liquid antibiotics down so yesterday I got him pills instead, at least for one of them (unfortunately the other one was liquid-only). He’s of course been lethargic but generally happy most of the time, and during my birthday party yesterday he mostly just hung out in my bedroom, but occasionally said hi to people — very uncharacteristic for him, and towards the end I even took him around to everyone to get pettings.

Anyway, today he’s been feeling a bit better, and I had a cheeseburger for lunch, which he got really interested in and wanted some of. So I decided that he can, in fact, haz cheezburger, and he’s enjoying it quite a lot, and eating way more than I’ve seen him eat lately. Really going to town on it. (I tried taking a picture for the meme™ but he was way more interested in snarfing it down than waiting for me to manage to get any shots in. Oh well.)

He’s such a good little guy.

Lazy Sunday

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Yesterday I spent some time at the new house, trying to install Ethernet, but I discovered that my drill doesn’t have nearly enough torque to successfully drill a sufficiently-large hole in the subfloor, as it turns out. Investigating some other things made me realize that I need to get a bunch more power outlets installed in the basement anyway, so I hired an electrician (the same one who did the work on my kitchen) and he said that he can also run the ethernet cabling while he’s there.

I was also feeling pretty cruddy from allergies, so I didn’t finish the other big thing I wanted to do (namely assembling my new standing desk), and instead I went home and took a nap before my vaccination appointment, which went off without a hitch.

So far I’m not experiencing any major side effects, just a sore left arm and some vague headachey feelings, but that said I have no interest in working on house stuff today.

Tuesday I’m going to be busy all day with preparing my condo for the movers on Wednesday, and part of that means taking all my computers offline. So my access will be limited until Friday, when Centurylink comes to install the fiber.

Annoyingly I’m probably going to have to go to the house at some point on Tuesday, because a package which was going to arrive over the weekend got “helpfully” bumped up to Tuesday and I’d really rather not have it sit unattended on my porch for longer than necessary. I mean, the neighborhood seems pretty safe, but package thieves are everywhere now. But it’s being shipped USPS so maybe they’ll just hold it at the post office anyway? Who knows.

Anyway, wow, I’m feeling so overwhelmed by all the stuff I need to do, even with paying lots of money for movers to do all the things. But in a few days I’ll be moved in! And then hopefully my condo sells quickly and then I can get started on all the projects I want to do in the new house. That list is long.

Vaccination

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It’s been nearly 13 months since COVID-19 made its way to Seattle, but I’m finally getting vaccinated on Saturday! And so many people I know are vaccinated now!

I didn’t have a lot of choice on the vaccination day, but at least I was able to choose a time in the afternoon. My plan for Saturday is to spend a bunch of time at the new house to install the Ethernet, and then to get my first vaccination dose, and then hopefully any side effects I end up with wear off by Tuesday which is when I need to spend all day preparing for the movers.

It’s pretty interesting to go back to March 2020 and revisit how things felt back then. Also the beginnings of the BLM protests. Holy crap, it sure has been a year, huh?

So much for Wellbutrin

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Yesterday I was feeling pretty off, in a “wow I think my blood pressure is spiking again” way. And I happened to have an appointment at the pain clinic, and they measured my blood pressure at 160/90, which is, you know, Pretty High. At the time I chalked it up to having walked over there in a hurry, but throughout the afternoon and evening I kept measuring it and it remained that high.

And then all night long I had a hell of a time sleeping. I only got around 3 hours of sleep total; most of the time I was just lying awake, blood pounding in my ears, feeling like I was going to die. At 3 AM I also checked my blood pressure again and it was 160/100. Yikes.

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Ugh no I need to get off nortriptyline

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Nortriptyline helps me with pain and brain stuff but it also has been making my blood pressure steadily go up. These problems I’m having are a repeat of why I tried getting off of it the last time around. Constant dizziness and headaches and tinnitus and feeling like crap.

I appreciate how much it helps me with my anxiety and my insomnia and pain, but I need something else.

The sorry state of medication reminder software

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I use an app called Medisafe to give me my medication reminders. It’s useful because it tracks my doses and also tracks how much I have left so I know when to order refills and so on. I’ve been using it for years.

Unfortunately it has a critical problem in that it only sends three easy-to-miss reminders spaced ten minutes apart with no way of configuring it. So often I’ll end up taking my medication a few hours later than the scheduled time, because I head to bed and notice the pending reminder that I meant to fulfill.

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Healthcare followup

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Today I had a followup with my doctor after the cessation of gabapentin. My blood pressure is the lowest it’s been in years (118/75!) and she was really happy to see how much less stress I’m under. After discussing the current medication status we agree that I should stay on the nortriptyline for now, and she’s glad that physical therapy has been helping me a lot, as well as me getting better at mindfulness and other stress reduction things.

She also encouraged me to get going with a psychiatrist again so that I can possibly get back on Adderall or to try something else. I think before I do that I’ll see how well I tolerate caffeine. Which I’ve had a bit of over the past few days and it’s not been hecking me up at all, so this seems really promising.

Anyway she gave me a lot of words of encouragement and is also grateful that I’m taking such an active role in trying to make my own life better on multiple fronts. Hopefully this trajectory can continue.

Various health updates

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Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.

One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.

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Life update whatever things I dunno

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Publ survived the load test. Will fluffy survive the ego test? Time will tell.

Anyway. Today I finally had my first appointment with the new rheumatologist. It went really well. I didn’t get any real new information, but at least this rheum is way friendlier and actually treats me like a human, rather than a pile of symptoms. Plus she actually listens to me and is interested in the things I’ve learned about fibromyalgia and so on.

Since my current meds aren’t doing enough for me, she offered two immediate possibilities, either switching the gabapentin with Lyrica (pregabalin), or supplementing it with Cymbalta. Both were things that the previous rheumatologist had suggested but I loathed working with him and never felt like going back1.

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