Pain management

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.