Huh, it’s been a while since I’ve posted a blog entry. So let’s do some catch-up to the present, I guess.
Rambles that are fluffy, by fluffy
Huh, it’s been a while since I’ve posted a blog entry. So let’s do some catch-up to the present, I guess.
My new doctor has already proven himself to be way, way better than my last doctor. He’s really diving into my records and gathering insight to confirm my suspicion of hEDS. Meanwhile he’s put me on muscle relaxants “as needed” and I was taking them a couple hours before bed for a few days and started to feel a lot better. But I haven’t been taking them for the past few days, and I’m feeling worse. Go figure. So, muscle tension is definitely a factor, which I think goes along with hEDS? Like, reducing my muscle tension gives my shitty connective tissue a better chance to actually heal.
I also finally got an appointment with a new dentist. It’s towards the end of September (I really should have gotten on this sooner, as I’m due for a cleaning in, like, a week) but I’m really optimistic about the new dentist; her intake form is incredibly inclusive regarding gender stuff (with an open-ended selection for pronouns, and gender checkboxes that include non-binary!) and neurodivergent things (questions about a whole bunch of dentist-specific anxiety triggers to avoid, whether a blanket or weighted vest helps, whether it’s okay to be lectured about dental health, etc.). Also, she’s a PoC. I’ve never had a dentist who wasn’t a white dude before, and maybe that explains why it’s always felt like dentists don’t care about privilege or diversity or, y'know, taking care to make people feel comfortable.
Little dude is definitely slipping away more and more each day. By the rubric he’s probably past the point where I should consider euthanasia, but he doesn’t seem to be in pain and he’s enjoying pets/skritches/sitting with me/eating (especially stealing my food) so for now I’m going to just let it ride.
If he starts expressing pain I’ll have to make a tough choice, but for now he’s basically just getting progressively drunker and sleepier all the time (except when food’s involved). I really hope he just drifts off one time and never wakes up (although every time I check up on him he ends up waking up and gets excited about the prospect of food).
He’s having trouble staying steady while standing or walking, and Fiona’s started to interpret this as him being a lost kitten. She tries to pick him up by the scruff, even though he’s nearly as big as her, and he has none of it. So Fiona gets pretty confused by this.
So, I had a very bad experience with my doctor with this latest chronic pain flare (and the short-term disability leave situation), and with encouragement from my therapist I am switching to a different doctor. The doctor I’m switching to specializes in LGBT healthcare (and apparently 10% of his patients are trans) and also has a specific interest in treating chronic conditions, which is what I need.
I’ve also gone back to my self-determined physical therapy regimen. You know, the one that my GP and the pain doc and physical therapist she referred me to all think will cause more injury, even though it’s always helped me in the past. So far it feels like I’m actually making progress on recovery.
Werner was unable to keep his liquid antibiotics down so yesterday I got him pills instead, at least for one of them (unfortunately the other one was liquid-only). He’s of course been lethargic but generally happy most of the time, and during my birthday party yesterday he mostly just hung out in my bedroom, but occasionally said hi to people — very uncharacteristic for him, and towards the end I even took him around to everyone to get pettings.
Anyway, today he’s been feeling a bit better, and I had a cheeseburger for lunch, which he got really interested in and wanted some of. So I decided that he can, in fact, haz cheezburger, and he’s enjoying it quite a lot, and eating way more than I’ve seen him eat lately. Really going to town on it. (I tried taking a picture for the meme™ but he was way more interested in snarfing it down than waiting for me to manage to get any shots in. Oh well.)
He’s such a good little guy.
Werner doesn’t seem to have a lot of time left.
Yesterday I spent some time at the new house, trying to install Ethernet, but I discovered that my drill doesn’t have nearly enough torque to successfully drill a sufficiently-large hole in the subfloor, as it turns out. Investigating some other things made me realize that I need to get a bunch more power outlets installed in the basement anyway, so I hired an electrician (the same one who did the work on my kitchen) and he said that he can also run the ethernet cabling while he’s there.
I was also feeling pretty cruddy from allergies, so I didn’t finish the other big thing I wanted to do (namely assembling my new standing desk), and instead I went home and took a nap before my vaccination appointment, which went off without a hitch.
So far I’m not experiencing any major side effects, just a sore left arm and some vague headachey feelings, but that said I have no interest in working on house stuff today.
Tuesday I’m going to be busy all day with preparing my condo for the movers on Wednesday, and part of that means taking all my computers offline. So my access will be limited until Friday, when Centurylink comes to install the fiber.
Annoyingly I’m probably going to have to go to the house at some point on Tuesday, because a package which was going to arrive over the weekend got “helpfully” bumped up to Tuesday and I’d really rather not have it sit unattended on my porch for longer than necessary. I mean, the neighborhood seems pretty safe, but package thieves are everywhere now. But it’s being shipped USPS so maybe they’ll just hold it at the post office anyway? Who knows.
Anyway, wow, I’m feeling so overwhelmed by all the stuff I need to do, even with paying lots of money for movers to do all the things. But in a few days I’ll be moved in! And then hopefully my condo sells quickly and then I can get started on all the projects I want to do in the new house. That list is long.
It’s been nearly 13 months since COVID-19 made its way to Seattle, but I’m finally getting vaccinated on Saturday! And so many people I know are vaccinated now!
I didn’t have a lot of choice on the vaccination day, but at least I was able to choose a time in the afternoon. My plan for Saturday is to spend a bunch of time at the new house to install the Ethernet, and then to get my first vaccination dose, and then hopefully any side effects I end up with wear off by Tuesday which is when I need to spend all day preparing for the movers.
It’s pretty interesting to go back to March 2020 and revisit how things felt back then. Also the beginnings of the BLM protests. Holy crap, it sure has been a year, huh?
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.
Nortriptyline helps me with pain and brain stuff but it also has been making my blood pressure steadily go up. These problems I’m having are a repeat of why I tried getting off of it the last time around. Constant dizziness and headaches and tinnitus and feeling like crap.
I appreciate how much it helps me with my anxiety and my insomnia and pain, but I need something else.
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.
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.
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.
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).
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.
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.