fluffy rambles (Health)

Werner doesn’t seem to have a lot of time left.

Yesterday I was feeling pretty off, in a “wow I think my blood pressure is spiking again” way. And I happened to have an appointment at the pain clinic, and they measured my blood pressure at 160/90, which is, you know, Pretty High. At the time I chalked it up to having walked over there in a hurry, but throughout the afternoon and evening I kept measuring it and it remained that high.

And then all night long I had a hell of a time sleeping. I only got around 3 hours of sleep total; most of the time I was just lying awake, blood pounding in my ears, feeling like I was going to die. At 3 AM I also checked my blood pressure again and it was 160/100. Yikes.

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.

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.

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.

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.

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.

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.”

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.

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.