The sorry state of medication reminder software

I use an app called Medisafe to give me my medication reminders. It’s useful because it tracks my doses and also tracks how much I have left so I know when to order refills and so on. I’ve been using it for years.

Unfortunately it has a critical problem in that it only sends three easy-to-miss reminders spaced ten minutes apart with no way of configuring it. So often I’ll end up taking my medication a few hours later than the scheduled time, because I head to bed and notice the pending reminder that I meant to fulfill.

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Healthcare followup

Today I had a followup with my doctor after the cessation of gabapentin. My blood pressure is the lowest it’s been in years (118/75!) and she was really happy to see how much less stress I’m under. After discussing the current medication status we agree that I should stay on the nortriptyline for now, and she’s glad that physical therapy has been helping me a lot, as well as me getting better at mindfulness and other stress reduction things.

She also encouraged me to get going with a psychiatrist again so that I can possibly get back on Adderall or to try something else. I think before I do that I’ll see how well I tolerate caffeine. Which I’ve had a bit of over the past few days and it’s not been hecking me up at all, so this seems really promising.

Anyway she gave me a lot of words of encouragement and is also grateful that I’m taking such an active role in trying to make my own life better on multiple fronts. Hopefully this trajectory can continue.

Various health updates

Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.

One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.

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Life update whatever things I dunno

Publ survived the load test. Will fluffy survive the ego test? Time will tell.

Anyway. Today I finally had my first appointment with the new rheumatologist. It went really well. I didn’t get any real new information, but at least this rheum is way friendlier and actually treats me like a human, rather than a pile of symptoms. Plus she actually listens to me and is interested in the things I’ve learned about fibromyalgia and so on.

Since my current meds aren’t doing enough for me, she offered two immediate possibilities, either switching the gabapentin with Lyrica (pregabalin), or supplementing it with Cymbalta. Both were things that the previous rheumatologist had suggested but I loathed working with him and never felt like going back1.

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Current status

My neighborhood is a war zone, but all signs point to SPD abandoning the East precinct and deescalating. I am suspicious that after they do, they’re going to purposefully cause crimes to make everyone fear for their safety to try to get us to beg for them to come back. If this happens, I hope we see past it.

The next few months are going to be interesting, and not in a great way.

Meanwhile, I’m sick with yet another sinus infection, and this combined with my mental health and my chronic pain issues are making this a very bad time. I mostly slept and cried today, although now it’s 10 PM and I’m at least feeling good enough to exist.

Job-wise, the news is quite public now that my company was hosting the Blue Lives Matter site, and enough was enough and pretty much everyone at the company revolted over it. They’re shutting the site down now. I don’t know how long it’ll take, but we are going to hold them to it.

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Regular check-in

I’m personally physically all right, at least for now. The house guest also made it here safely, right before things got really weird.

I gotta say, getting an urgent group text informing my building of an incoming teargas cloud and “Close your windows” is not a thing I thought I’d ever experience first-hand.

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Pain management

Current state of affairs: the opioid painkillers have stopped being effective, so I’m gonna stop taking them for now. My doctor prescribed me a rather aggressive regimen of Tylenol (4000mg/day! holy crap) and some muscle relaxants, the latter of which help a little but not very much. She also increased my daily dose of gabapentin from 200mg to 400mg, and that isn’t helping much either.

I did finally get one of those old-school hot water bottles (the rubber kind which fill like a balloon and have a screw-in cork) and it turns out that this is a really good use for my sous vide machine, so that’s cool. The hot compress seems to do more for my pain than any of the meds do. Not enough to be, like, productive, but enough that I’m not screaming in pain. But maybe I can get back to work.

Anyway, on the plus side I finally got set up with a new rheumatologist, and I’m also starting physical therapy, so maybe those things will help with my ongoing fibro issues (which this could very well be yet another expression of, for that matter).

Things and stuff

Got an appointment with my GP today. She understands my frustration at how the ER went, and she did a brief physical exam, in which she saw that my muscles are… very, very tense.

She prescribed me muscle relaxants and increased my dose of gabapentin. Hopefully that’ll help. I took my first dose of relaxants about three and a half hours ago and I’m not in as much agony but things still hurt. But it’s an improvement. Hopefully this continues.

Another pain, another frustration

For the past few days I’ve had some low-grade pain building up in my shoulder, just like it did in November 2017. Today it got excruciating. So I went to the hospital to get it checked out to make sure I wasn’t going to die of an embolism. I shared my medical history with this stuff (repeatedly) and the nurse and doctor focused on getting an embolism diagnosed.

That turned up negative. Which is great! But I’m still in excruciating pain. Which isn’t.

The doctor was dismissive of my pain. The nurse was too. She said that maybe knowing it’s not an embolism means I’ll feel better, and suggested the pain was just anxiety. But no, it is absolutely not just anxiety. Or just chronic pain. I’ve been dealing with chronic pain for over 20 years now. I know what chronic pain feels like. This ain’t it.

I wasn’t in excruciating agony while lying down, but as soon as they discharged me they were nowhere to be found. As soon as I sat up I was in agony but I couldn’t find anyone to talk to. I already had my discharge paperwork, and it was late at night, and I wasn’t dying, so, just toss me out onto the street, don’t even try to find a sling or something that’ll help me.

I did at least manage to get a prescription for some painkillers. Maybe that’ll help, but I got home well after the pharmacy closed.

I mean I’m glad I’m not dying and that this probably wasn’t because of the clot, but holy heck am I in agony right now.

Maybe I should have put on more of a show about how much pain I was in. After the past two decades I’ve gotten pretty good at powering through pain and not, like, screaming and crying. That doesn’t mean I’m not hurting, it just means I’ve gotten good at not showing it. I’ve always learned to minimize my pain. So people see my pain as not being “real.”

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Stuff and things

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.

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Followup from yesterday

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.

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Clot II: The Sequel

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.

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Updates

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.

Updates from Elsewhere

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.

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Masking symptoms

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.

Prognosis: good

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.

Current status

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.

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Living in a future ghost town

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.

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Health update

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.

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Cold in a hot zone

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.

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