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.