I took a sick day today, because I was feeling very much under the weather, and had a mild fever and a bit of a cough. I rested up a bunch and I’m feeling a lot better now. Still slightly short of breath. So I’m probably going to continue to work from home for the next few days at least (a shame, I really want to try out my new chair which finally arrived today!) and if I hear that COVID-19 test kits are both reliable and available I’ll probably see about getting tested, even if it doesn’t progress any further than this. I’m also going to skip my drawing group this week.Read more…
fluffy rambles (Health)
Rambles that are fluffy, by fluffy
So, COVID-19 has made it to Seattle, and there’s been enough localized outbreaks that people are absolutely flipping out because of it. Store shelves have been cleared of nonperishables, paper products (especially toilet paper!), hand sanitizer, face masks, and bottled water (even though there’s been absolutely no concerns about our water infrastructure whatsoever and this is only causing problems for people who need to, like, fill their CPAPs and humidifiers and whatever).
Hospitals are completely overwhelmed and unprepared, and there’s no test kits to go around. I have people shouting in one ear about how terrible everything is and how we’re all going to die, and people in the other ear saying how everyone who’s overreacting is being silly and there’s no reason for anyone to do anything differently.
Somewhere in the middle, I am concerned about the pandemic, but also about what this will do to this city while everyone’s in a panic.
And meanwhile, I’m coming down with something. I don’t know if it’s my usual winter cold, or something worse; I don’t think I’ve been in a situation where I’d have been exposed to COVID-19 in particular, but for the past few days I’ve had persistent shortness of breath, and today I started feeling nauseous and came close to vomiting; not a typical COVID-19 symptom but not without precedent either.
I contacted my new doctor about it and they gave me the usual CDC guidance and that if I’m feeling ill and haven’t been directly exposed to coronavirus I should come in for an exam, and if I have possibly been exposed they can do a video visit to get a better idea of what’s going on. Meanwhile I had a hot shower and some toast and fried eggs for dinner and I’m feeling somewhat better. Not great, but better.Read more…
So, on the plus side, Adderall XR has been helping me quite a lot with my focus and executive functioning.
On the minus side, I’m having several of the unpleasant side effects: greatly increased blood pressure, numb toes, migraines/nausea (starting yesterday or so), and constipation.
I was really hoping I finally found something that works for me. Maybe I should stop taking it for a couple days and see how I feel. Because right now I just feel bad.
- indieweb: pain
- indieweb: cpap
- indieweb: fibromyalgia
- indieweb: health
- indieweb: software
- indieweb: nerdery
Let’s see, where am I at right now…
Sleep: I got a weighted blanket on Meh. I’ve slept with it two nights. First night my sleep was aborted because of a… thing, second night I slept pretty well under it and woke up sore in the morning as if I’d been lifting weights for the last several hours. Interesting.
My new CPAP mask has been working pretty well for me. Although somehow I managed to not only take it off but take it apart in my sleep last night. Wat.
The… thing: I was feeling a mysterious pain in my left leg and hip starting on… Tuesday, I think? and it was getting worse and worse, and felt a lot like the DVT I had back in November 2017 which threw a clot and turned into a pulmonary embolism which wasn’t exactly a fun experience that I have any interest in repeating anytime soon. So I went to the ER to get it checked out, and it turned up… nothing. So, good news, no DVT. The doctor suggested I just take it easy for the next few days, which I am trying to do, and oddly enough I’m feeling a lot better, go figure. Also I’m glad I’m with Kaiser because the whole thing only cost me $15.
But it’s hard for me to take things easy because I want to get my home clean, because my birthday is coming up soon and I am intending to host a completely unrelated pizza party at my home. (Incidentally, if you are in the Seattle area and are interested in pizza and you think I know you well enough to let you into my home, let me know and I’ll maybe extend you an invitation to the party!) Fortunately a friend is coming over tomorrow to help me out with the cleaning stuff (for which I am incredibly grateful!) but I am oh so very tired. So I mean I’m taking things easy at the moment, but I’d rather not.
- indieweb: life
- indieweb: updates
- indieweb: fibromyalgia
- indieweb: CPAP
- indieweb: health
- indieweb: job stuff
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.
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.
So I’ve been on nortriptylene for nearly two weeks now, and so far it’s feeling pretty promising. I’m still at the 10mg dose (I’m supposed to increase to 20 in a few days) and while it hasn’t completely solved my fibromyalgia so far (not that I’d expect it to), it’s definitely helped me out a lot.
In particular, while I still feel pain after a full day of work, it just feels like something that’s present and that tells me that it’s time to take a break from things, rather than putting me into extreme severe agony.
Basically I suspect this is what pain normally feels like to people who don’t have this disability!
I still have some level of fatigue in the morning (and much more later in the day) and I’m still needing to manage my spoons – that’s not something that is likely to ever go away – but even this early and at this low of a dose I feel like I’m heading in the right direction.Read more…
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).
I took my first dose Monday night, and I had some incredibly intense dreams, and I was very aware that I was dreaming but kept on switching between like six different parallel threads, and was also very aware of my various apnea events. I was sort of awake and asleep at the same time and wasn’t really sure what was a dream and what was reality.
All day Tuesday I was drowsy and in a fog, and did absolutely nothing with my day except basic things around my home. Fortunately, it was also a day off because of the snowpocalypse.
I was kind of worried that my second day on it would be much the same, but aside from feeling vaguely like I was stoned all morning, I made it to work just fine (although I was in sort of a zombie mode on my way there), and then during the day I actually had a fairly productive day. In particular, I finally looked into modernizing the lab’s website (which was originally running Movable Type, just like this one), and realized that a quick-ish path forward would be to use Publ. However, the lab’s site had a lot more hackiness with templates and layout than my own one did, and I quickly came to the conclusion that the best path forward would be to finally implement better support for pure-HTML entries – so I did.
So far I’m not finding any major reduction in my pain levels (and if anything I’m noticing the pain I do have much more acutely) but I mean I’m only at the starting taper dose.
I’m getting a couple of cavities filled tomorrow. I’m not looking forward to finding out how that interacts with this current mental state.Read more…
So, Seattle’s been basically shut down for most of the past, oh, week and change, thanks to the snow. People did overreact to the news of the snow (did they really need to stock up with a month’s worth of bread and milk?) but the various shutdowns do otherwise make sense; Seattle is very hilly and when it snows it gets icy and slippery. And some caution does make sense for having a nonperishable food supply, since power outages are a thing. The really remarkable thing is just how much snow we’ve gotten this year; most years we’ll get none or just a light dusting, or maybe we’ll get one or two snow days when it gets especially bad.
But anyway. Despite the shutdowns, my doctor’s office was still open today (thankfully, although unsurprisingly as they have an urgent care clinic so they make plans to stay open as much as possible). So I was able to do my appointment where I finally got to deal with my various medications for fibromyalgia (as well as finally getting a new prescription of estradiol).Read more…
I finally got the results of my sleep study. Well, partial results, anyway. In-home tests can find either obstructive or central apnea, and complex apneas appear as obstructive. So, unsurprisingly, it determined that I have obstructive apnea.
Anyway, the good news about this (and it’s all good news!) is that I’ll be getting a CPAP machine, and modern CPAP machines are small, lightweight, self-adjusting (no need for a separate titration!), and also provide ongoing diagnosis. So after two weeks of sleeping with it, I’ll know if I have complex or simple obstructive apnea, and either way the treatment is a CPAP so I don’t really care to split hairs about what the underlying problem is.Read more…
So yeah. This explains a lot about my chronic pain issues – and a bunch of other things.
It explains my IBS and anxiety.
It explains my sensory overload.
It explains my chemical sensitivity.
It explains my need to manage my “spoons.”
It explains why drinking alcohol makes me hurt all over.
And it also explains how I can move forward, and I’m actually already on the right track.Read more…
So, after many years of being aware of a problem with my sleep, I finally saw a sleep specialist. It was good to learn that whatever is going on can be figured out and treated.
What’s really frustrating is what led to me taking this long, and how much I’ve been shamed for having this disorder and how I’m yet still being shamed for having not taken care of it sooner.Read more…
- indieweb: Health
So because I’m starting the new job next week I figured it was time to get myself back on a compatible sleep schedule. In the past I’ve always done this by taking a dose of melatonin before bed to ease myself into going to bed early, and then try to continue to go to bed at a regular time every night. That usually works for about three days.
What I’m doing this time is attacking it from the other end: I have set my smart bed and Apple Watch to both wake me up at 8:00 every morning, both only on weekdays. The smart bed’s alarm comes through my phone (which charges on my nightstand) and happens during a shallow sleep phase during the half hour or so before the actual alarm time. This usually wakes me up effectively.
The Apple Watch charger, however, lives on the bookshelf across the room, and the Nightstand Mode alarm turns out to be the right combination of pleasant enough to not be jarring and annoying enough to get me up to turn it off.Read more…
I was kind of thinking about skipping this last week because the previous few sessions were feeling not very useful for me, but I ended up going anyway and I’m glad that I did.
Also, I’m not sure if I mentioned this before but if you’re in Seattle, these workshops are available to you whether you’re a Kaiser Permanente member or not! There’s more information about that on their living well classes, including online versions (and they also have additional online resources).
Main topics today:
- Working with healthcare providers
- Weight management (ugh, but don’t worry)
- Looking forward
Oops, I forgot to post these earlier while the session was fresh in my mind. I’m going to have to work a lot harder to decipher my handwriting this time around.
This was the 5th week. Next week is the last one. I’m kind of glad to see it ending. Sigh.
Topics covered this week:
- Depression management
- Physical activity
- Mind management
Week 3’s curriculum covered the Moving Easy Program (a simple but effective stretching and minor strength training regimen), pacing and planning, treatment evaluation, and decision making strategies (both for treatment seeking and for other aspects of life).
Last week’s action plan was to do 10 minutes of yoga in the morning, 4 times. I was mostly successful, but only did it 3 times, as today I slept in from having to work late last night (doing a final build of the iOS app for Borealis).
Throughout today’s session we also got some useful affirmations that I can put onto my affirmation board:
- Practice makes progress
- You choose
- Are you choosing pain?
This week was a lot more comprehensive than the first week, and it feels like a lot more happened in about the same amount of time.
The major areas of focus were: problem-solving, dealing with difficult emotions (especially useful for me right now), physical activity, relaxation techniques, and dealing with fatigue.Read more…