fluffy rambles (CPAP)

So, because I’ve changed insurance plans, I need to change my specialists as well. One of those is my sleep specialist, which I mostly want to get a DME provider set up with my insurance, which requires a screening in order to get DME approval.

Because of COVID-19, appointments are limited, and they can’t see me until June 1, which means if I need to refresh my mask et al I’ll have to go out-of-pocket until then. Not the worst thing in the world (and honestly I found out-of-pocket to be cheaper than the copay on my previous DME anyway), but annoying.

But there’s a bit more that this leads to which is a little wonky… because of COVID-19 they had to ask me the usual appointment pre-screening questions regarding SARS-NCoV-2 symptoms and exposure. But those questions are based on right now, and probably won’t be valid in three months. Like, one of them was “have you traveled in the last 14 days or been exposed to someone known to have the virus in that time?” and regardless of how I answer now that has no bearing on how it’ll be on June 1. Similarly, just because I have no symptoms or fever right now doesn’t mean anything about how I’ll be in June.

If the appointment were within two weeks I’d say this was reasonable, but… it’s two months away. How does that make any sense?

I guess it’s been a little while since my last post about the unending tire fire that is my mental state. I’ve been yo-yoing a lot, but here’s a summary of where I’m at right now:

CPAP: I’m back on it, trying some different things to make it more useful. The main problem seems to be bad mask fit, so tomorrow I’m going in for a proper mask fitting (rather than the half-assed thing the DME vendor did during the training session). Hopefully that will help.

Nortriptyline: I’m steady at 30mg/day, and have started taking it earlier in the evening, which has helped me with actually being tired when I need to be.

That weird failed drug test: Still no idea what happened with it. As one followup to it I had another diabetes screening (since that’s one possible cause of a false opium positive) but that came back fine (normal A1C and nothing out of the ordinary with my blood sugar), so that’s one less thing to worry about at least.

Day job: Still feeling like this is a bad match for me. Coworker is trying to assure me that I’m doing fine and trying to be helpful at getting me up to speed on the stuff I need to understand, but my brain refuses to play along.

AR startup: Going pretty well, I guess? I’m not doing a lot of active work for it but I’m glad to help out where I can.

Social life: I’m feeling much more withdrawn from my usual activities and am still on hiatus from most of my meetup groups. Ed is no longer hosting karaoke so I’m back to doing my drawing group every week. It’s going just Okay but I mostly use it for hanging out with a handful of folks I like. With a couple of those folks I saw Detective Pikachu the other day, which I enjoyed but I still have thoughts about. The monthly “smol games” group I’m in is still great though, even though I’m not actively working on any games (but I love seeing what other people are doing).

Music: Still plinking away at stuff. Also I really want to be able to attend Song Fight! Live, which is in Madison this year, but planning travel for it is a bit onerous. With music production I keep on waffling between “this stuff I’m making is pretty good, actually” and “ugh this is garbage.” So, same old, same old.

So yeah the last um… two months have seen my fibromyalgia getting worse and worse, and my sleep getting worse and worse, and my pain getting worse and worse, and me just plain feeling like garbage and falling apart and constantly falling asleep throughout the day.

I still haven’t heard back from last week’s in-lab sleep study, but finally I decided enough was enough and two days ago stopped using my CPAP.

Two days ago I thought I might have to cancel all my weekend plans. Today, however, I felt absolutely fantastic, and did those plans and then some. And I still feel fine.

I am pretty sure the CPAP has been doing more harm than good, and I need to make the sleep doctor understand that while one metric (AHI) was going down, it’s only because the more important metric (amount of actual sleep managed) went down moreso.

Like, yeah, I wasn’t suffocating in my sleep, because I wasn’t sleeping.

Anyway. Tomorrow I will probably stream the iPhone battery replacement at, say, 2 PM PDT; if you want to see me possibly destroy the only phone I have which works properly, follow my twitch channel and “ring that bell,” as all the YouTubers say.

And I hope that with this newfound state of feeling pretty okay I’ll be able to start making music and comics (and therefore streaming!) more regularly again.

So, whatever positive effect I’ve gotten from the nortriptyline isn’t enough to make up for my current baseline pain levels. At least I’m able to get out of bed again (unlike a week ago) but holy moly do I fall into agonizing pain after not doing a whole lot. This weekend I wasn’t even capable of doing my usual 3-to-5 miles of walking a day, and I’m thinking tomorrow I might end up having to take a bus or even a Lyft to work. Very frustrating.

Also, lately I’ve noticed that the extra weight of my iPad in my purse is taking its toll on me. I should probably switch back to using my backpack as my main conveyance; it’s heavier but at least it’s symmetrical and puts the stress on my back rather than my shoulder and neck.

On the plus side, I’ve finally gotten my CPAP working well enough for me. I ended up finding a decent video on how to adjust the nasal pillows and those have turned out to be much more comfortable, given a second chance. The face mask ends up being too disruptive for a bunch of reasons (the slightest movement makes it leak around the sides and I have no way of scratching my nose without hecking the fit up) and I somehow managed to lose the nasal mask (which was nearly as bad as the full mask anyway) so the fact that I’ve gotten the one I’m “supposed” to be using to work reliably and comfortably is nice.

I still feel like it disrupts my sleep somewhat, though. I hope that’s just a matter of something I Need to get used to. Hopefully I’ll eventually start getting reliable deep sleep on it once I’ve fully acclimated.

Anyway. Being up this late and typing a blog post isn’t exactly helping. But I figured an update was in order.

On the nortriptyline front, I’m up to 20mg/day and it’s feeling fine. It hasn’t solved my fibromyalgia forever (and after a day of typing and whatnot I’m still in pain, and my pressure points are still indicative of fibro) but it’s helping me a lot all the same. An unsurprising-but-nice thing is that it’s also vastly reduced my anxiety, which isn’t too surprising since that’s one of the on-label uses of this medication that I’m technically taking off-label. Does that count as a side-effect?

On the CPAP front, I’ve switched back to the nasal mask and it’s actually working pretty okay for me. I think the machine has finally learned to reduce its pressure because I’m a lot more comfortable throughout the night, although I still end up waking up at around 4 AM and taking it off so I can scratch my nose. Still, I’m generally feeling a lot more refreshed in the morning. I just need to get in the habit of putting it back on after I wake up and take care of the itching.

Also my cats have gotten used to it, which is nice.

Only too late did I realize that trying to adjust to a CPAP machine while already adjusting to a brain medication (that has weird effects on sleep) means that I am once again doing things on hard mode. Oops.

So far I’ve had two nights with the CPAP. The first night I didn’t get any real amount of sleep while on it and ended up taking a nap after I “got up” in the morning. The second night I did a bit better when I stopped worrying about paying attention to my breathing, although that’s hard to do.

Probably the weirdest thing about a nasal CPAP mask is that if you open your mouth, the air gets forced out through it and causes a sort of reverse snore. And it feels really weird. So if I need to talk to a cat, for example, things go strange.

Anyway the lack of sleep has made me feel like I’ve gotten a pretty big setback with chronic pain stuff; the day before CPAP, I was feeling pretty good, and over the last two days my major chronic pain has come back all over and in a big way. I’d hold off on the CPAP for now except insurance will only pay for it if I average 4 hours per night over the next two months, and I feel like in the long term CPAP is much more important for my pain stuff than nortriptyline probably is.

If tonight doesn’t go better I’ll probably go without CPAP tomorrow night though, because I have to be in good shape pain-wise on Tuesday (since I have a couple of big tasks at work plus I’m getting a bunch of cavities filled in the afternoon).