fluffy rambles (Health)

My shortness of breath has gotten somewhat worse, and my peak flow is around 400 L/min, which is somewhat lower than my average healthy level.

I had a video visit with one of the nurse practitioners at One Medical and while my symptoms aren’t severe enough yet that they think I need urgent attention, they do want me to come in this afternoon for a secondary screening so they can check out my lungs and see what’s going on with my asthma, at least.

Despite the current administration’s advertisements, there’s still no test kits available, and they’re not expected to be for a couple weeks. This h*cking country, am I right? And the CDC still only care about suspected direct exposure or people who have themselves traveled internationally, despite the growing epidemic and the fact that almost none of the confirmed cases (including deaths) fell into those categories.

If this were just an asthma flare due to a cold they’d be putting me on prednisone (which is a standard course of treatment which works well for me), but they’re concerned about the immunosuppressant effect if I do have COVID-19.

Pretty much all of the tech companies (mine included) have moved to a “work from home unless absolutely necessary” policy. We’re all suddenly getting into a remote-worker mindset — which I think is a long-term good thing, but it’s jarring. Looking out my dining room window I still see a typical amount of foot and car traffic for this time of day, but there’s an air of desperation and paranoia. Maybe I’m just projecting though.

My own symptoms have all but cleared up. I do have a persistent ache in my back and shoulders, which I’m not sure if it’s attributable to this mystery illness or is simply my fibromyalgia flaring up as always. My temperature is back to normal. I’m still coughing on occasion but it’s infrequent, and it’s gone from dry to productive. My shortness of breath is… well, still lurking, but doesn’t feel like an impairment at the moment. I’m still glad that I have a pretty strong reserve of albuterol, all the same.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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