So, some updates of the things that have been going on in my life since the last update, because I’m waiting for my car to get some overdue scheduled maintenance and I forgot to bring my Switch, so why not.
So, some updates of the things that have been going on in my life since the last update, because I’m waiting for my car to get some overdue scheduled maintenance and I forgot to bring my Switch, so why not.
So, the update from yesterday is that I am now on anticoagulants again, and I am not terribly happy about it. On the plus side I’m on Xarelto which takes way less management than Warfarin, but on the minus side I am told that I likely need to be on them for a long time (at least a year, possibly forever) due to my prior clot history, and so far it’s been giving me a headache and I’m also constantly worried about, you know, bleeding out and dying.
I’m also still in considerable pain, both in my leg but also in my everything else, because this fibro flare just will not end. And I’m under a lot of stress right now, and I’m frustrated at a lot of things.
Back in November 2017 I had a clot in my leg that turned into a life-threatening pulmonary embolism. Fortunately it was a pretty mild one, so I’d have only died a little bit. Anyway, after that I was on warfarin for 6 months and then have been hyper-vigilant about leg pain ever since.
About a year ago I had leg pain for a while that felt like it could be another clot, so I went to urgent care and got a sonogram; they found nothing and said it was probably just fibromyalgia playing tricks on me.
Anyway, about a week ago I started having familiar leg pain again, but what with COVID-19 shutdowns it wasn’t particularly easy to find options for getting it diagnosed. It wasn’t getting any worse but it also wasn’t getting any better, so yesterday I asked my doctor, who had me come in for an in-person diagnosis, and the doctor who saw me was concerned enough to schedule a sonogram for me.
I just had that sonogram, and there is indeed another clot. But! It’s pretty benign.
Oops, I guess I haven’t been posting here as often as I’d like. I guess I’ve mostly been using Discord to keep in touch with folks.
I’m fairly busy at the day job. I’ve already rolled out a few important features for our websites and soon I’ll be ramping up on another project. So far everyone there has been super great and I’m glad I lucked out with this job, even without the societal/financial catastrope that happened shortly after I started.
Isolation hasn’t been great for me. I’ve been having a pretty bad fibro flareup lately, and I still haven’t quite shaken whatever this dang thing I have is. It’s not gotten severe enough to require medical attention but at the same time I’d love to not be missing occasional workdays when I’m feeling especially lousy. It might also just be part of the fibro flare, too. Fortunately the new job has unlimited sick days, because dang I’ve been taking a lot of them this past month.
I’ve had to switch back to decaf because it turns out having even half-caf espresso every day has gotten me sensitized to caffeine again, and I was starting to have panic attacks again. Phooey. I still love my Flair though. I’ve also had a couple of people ask me about selling my custom tampers so I should see about, like, doing that.
So, my cold symptoms came back somewhat today, so I took another sick day and took it easy. And now I’m feeling better, so, yay.
The last few days I’ve been having trouble with my sleep apnea again so I’m giving my CPAP another shot. Since I’m on new insurance and getting healthcare at a different place now maybe I’ll get a new sleep doctor who actually listens to my concerns instead of just taking shortcuts based on simple apnea.
I also of course still want to get tested for COVID-19, if only for peace of mind. I’m not fond of this constant uncertainty. If I can get a clean diagnosis I can stop having an anxiety attack every time I cough or feel short of breath. And on the off chance I do have the virus I know what to prepare for. (Plus I switch to no-contact grocery and food delivery for a while.)
Inside I’m going to ruminate about the virus itself.
This morning my prescriptions finally came through (I don’t know why they weren’t available same-day as they were filled, but whatever). So I donned one of my N95 masks (which I happened to have on-hand from years of preparedness around summer wildfires) and headed over to the drug store next door, to pick those up as well as some other medical things.
Unsurprisingly, the pharmacy didn’t have up-to-date insurance information in their system, and my prescriptions — a short course of prednisone, a prescription cough suppressant, and a steroid inhaler — came to around $450! When they updated with my new insurance it came down to $50, mostly for the inhaler. Even that’s a lot for a lot of people to handle, and I can’t imagine trying to afford these things without insurance. We need universal healthcare, already.
Also I dislike wearing the mask in public. People look at me like I’m either a paranoiac or like I’m one of the people who’s been hoarding necessary medical supplies that could better go to others. But I am very specifically in the category of people who are supposed to have and wear masks — people who are symptomatic and/or high-risk for infection! (I happen to be both.)
The pharmacist was completely okay, but I also went to get a few other things (cough syrup, thermometer probe covers1, nasal rinse saline2, stuff like that) and the cashier was a bit… weird to me about the mask.
Yesterday when I was walking to the doctor and back I made extra-sure to cough audibly whenever people looked at me funny.
Which reminds me, I still need to get a cane for when I’m having a pain flareup and want people to not give me dirty looks when I sit in the priority seats on the bus.
I hate that so much of illness has to be performative. Can’t people just, like, assume that people only take what they need? Then again, the massive hoarding of masks and hand sanitizer just indicates that people generally don’t, and that’s a big part of the problem.
But, whatever. I have my meds and I have no real reason to leave the house for a while. Well, except I need to buy more cat litter and I have a bunch of coupons that expire tomorrow anyway. Maybe I’ll just go maskless and cough on everyone. That’ll learn ‘em.
Ironically, when I wear the mask outside I don’t need to cough as much, because the air inside it is warm and moist.
Just got back from the doctor. She says I definitely have a virus but it’s probably not COVID-19; I probably have one of the many other emergent respiratory viruses that’s going around, many of which also cause the symptoms I’m feeling. Notably I’m not having any signs of pneumonia, which is what I really need to look out for.
She prescribed me prednisone and inhaled steroids and says I should continue to self-isolate (of course) but otherwise I don’t really have anything to worry about. Of course I should go back if things get worse and keep her in the loop about any changes.
Incidentally, I am quite pleased with One Medical so far. They were super-friendly and compassionate, and they asked my pronouns and are elated to call me “fluffy.” It’s annoying that this kind of healthcare is only really available if you’re able to spend $200/year for concierge care, but I’m glad to be in a position where I can.
I mean, Kaiser was pretty okay! But they still felt bureaucratic and, well, HMO-ish. (And they were still better than any of the major care clinics/hospitals in Seattle, like Swedish or, worse yet, Virginia Mason…)
Anyway. Folks were asking for updates so here’s the update.
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.
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.
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.
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.
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.
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).