Just a random check-in entry for folks to know what’s going on with me. Because that seems to be all that my blog is good for, all in all.
fluffy rambles (Pain)
Rambles that are fluffy, by fluffy
My week off from work felt great. But I’m still having difficulty actually focusing at work. I have a bunch of paths of exploration to examine but none of them feel, y'know, right right now.
Meanwhile, my house continues to be a bit more work than I expected. On the plus side, I’ve successfully murdered my lawn and vastly improved my garden and started up my nice meadow. On the minus side, my heating bill is through the roof (literally) and I’ve been getting bids for finally improving the house insulation. So far I’ve had three bids which went thusly:
Still on disability leave, and still in considerable pain. I’m trying not to work too hard on things, but it’s hard not to do things.
For example, I worked on a song with my friends Ken and Huan-Hua for this week’s Song Fight!; we entered the “We Did Everything We Could” fight under the band name Richard Donner Party. It was a fun song to make. Fortunately I didn’t have to even so much as look at a guitar. Most of my work was vocals, light keyboard work, and editing.
Aside from a few hours of severe soreness last night and this morning, I haven’t had any major issues with the vaccination. Yay!
Also with my hecked-up shoulder/neck, the set of stretches I’ve been trying has been doing a good job of clearing up that pain too. If only I’d found those stretches last year instead of going through a month and a half of agony and condescention from healthcare professionals!
Also today I finally found my Wacom tablet and started poking at comics again. I also made a bunch of progress on my living room situation, and got Stepmania moved to my gaming PC (and also have my z-i-v mirroring thing running directly there, although wow Python is kind of a pain to deal with on Windows these days). I still haven’t actually hooked up my dance pad, though, but hopefully soon I’ll have the clutter mitigated to the point that I can do that.
Incidentally, I’m pretty underwhelmed by the TV stand I got. I’m not too surprised by the fairly low quality of the materials (especially given the price) but what I cannot get behind is its complete lack of internal cable management. Each of the 6 bays has a too-small hole out the back, and there’s no way to run cables internally, nor is there anywhere to reasonably stash a power strip. Ugh. I think I need to take up a furniture-making hobby so that I can eventually get to the point of making a TV cabinet that works the way I want it to. Because that’s what I need, more hobbies!
So I mean I ordered a circular saw, some saw horses, and a bunch of clamps, and most of it’s arrived already. And I’ve been watching at lot of 3x3Custom Tamar and Frank Howarth for inspiration. What I want to build actually seems pretty doable! (For that matter, Tamar did something very similar to what I want to make.)
Wellp, I managed to screw up my shoulder again. Last time was probably from me using my cane on a fairly long walk, and this time was probably due to me overdoing it with my weed puller (which requires a snapping motion that does similar things to my cane). Bleah. At least this time I know stretches and things that might help, and I found a bunch more which feel like they’re helping. Hopefully I’ll still feel well enough to get my second shot of vaccine tomorrow. (Which will probably have me feeling pretty much immobile for a few days anyway.)
I’ve been on Wellbutrin for a couple of weeks now and the effect has been interesting. I’m definitely finding it easier to focus on things like chores (and heck, my kitchen is the cleanest it’s been since the remodel got finished, and my dining room is well on its way to not being a disaster), but on the other hand it’s disrupting my sleep a lot and I end up feeling tired throughout the day. My dreams have also been way more intense.
Right now I’m feeling sick with my usual winter sinus crap, so I’m a bit wobbly and a lot nauseous.
Between the Wellbutrin and playing DDR my pain levels are a bit lower but still not amazing, and I’m still finding it easy to hit a fibro wall™. Tomorrow I have a followup with my pain doctor to try to finally get on low-dose naltrexone. I also have the next two weeks off from work and hopefully I won’t end up just working too hard on personal projects instead. (That said, I have a couple of creative output gift swaps with deadlines coming up that I really should start on at some point.)
Anwyay I guess I don’t have a lot else to say. Oh well.
I’m fully off the nortriptyline and I haven’t had withdrawal side effects for several days now. On the other hand, my persistent fibro dizziness is back, and when I hit a wall with a pain flare I really feel it. I’d forgotten just how much more intense that was before nortriptyline. (Of course, while on nortriptyline it’s not like the end result was any different so I don’t feel like I’ve made a big mistake getting off of it.)
My pain doc recommended trying low-dose naltrexone, which is something my previous pain doc had scoffed at1, but anyway I’ve sent a message to my GP asking about getting on it, and if she can’t take care of that then maybe my psychiatrist can, or maybe the pain doc can (but unfortunately he’s really busy and appointments with him are booked to well over a month out at this point).
Today i had a followup appointment with the pain clinic. Unfortunately, as soon as I started working again my pain flareups came right back. But the doctor was able to pinpoint a few things which are probably the underlying causes, and gave me some more exercises to try. We also decided to try increasing my nortriptyline dose again; I’m on 30mg for the next week then going up to 35 after that (update: and mentioned an eventual target of 40-50, forgot to mention that).
It’s also pretty clear that stress is a huge factor, and boy howdy have I been under a lot of it. Fortunately my new workplace is hugely into giving generous vacation benefits and making sure people actually use them, so in a couple weeks I’m taking a trip out to Port Angeles and staying in a tiny house for a week. I’ll probably bring a guitar and my iPad and try to just, like, decompress, and Be, and spend a bunch if time in the olympic peninsula and enjoy the small town vibe.
Everything I’ve seen about Port Angeles indicates it is a pretty good place with a lot of comfort potential. Maybe even the sort of town I’d want to retire to. And apparently it’s even pretty trans-friendly! I look forward to seeing this year’s Clellam county election results.
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.
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, 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.
So on this, the 6th day of being at 3x daily gabapentin, I noticed that I haven’t been in severe agony all over for the first time in a while. I’m still feeling tendon pain in the parts that get chronically overused (especially my thumbs) but it’s not doing the usual radiating thing that turns into systemic pain all over.
On the minus side, after taking my afternoon dose I got incredibly nauseous which only really started to let up 7 hours later (which is, incidentally, the elimination half-life of gabapentin), and this is the worst the nausea’s been. I’d been getting somewhat nauseous from the doses before but as it builds up in my system it’s just been getting worse and worse.
So I sent a note to my doctor asking if there’s a better way of dealing with it (because I’ve been very unable to get stuff done for the last couple days and I have a lot of stuff that needs to get done!) and meanwhile decided to go back to 2x/daily.
Supposedly the nausea subsides after 2-3 weeks but I really can’t wait 2-3 weeks for that to happen right now. I have GeekGirlCon prep to do, I have a job interview down in Portland sometime in the next week or two (for a job I’d probably be staying in Seattle for but it’s Portland-based and this means I might have to go to Portland more often, oh the horror! no, not the comfy chair!), and I have AR stuff to do in the meantime.
Anyway. Hopefully this means there actually is some hope in sight, and I just need to find the right balance of things. Or maybe something else that helps to counteract the nausea while I’m still acclimating to the gabapentin.
I guess I haven’t posted a public update on my gabapentin experiment in a while. Yesterday I started taking it twice a day, 100mg each time. I also created a simple blood serum estimator more to satisfy curiosity than anything else; I don’t expect it to be all that useful for anyone although I’m thinking that at some point I’ll add the ability to plot graphs and maybe specify the times of days for the doses or something?
Anyway, taking it in the morning as well as the evening means that I get a nice surge of dizziness, which will supposedly pass eventually (and will get better when I get up to 3x a day). So far I’m not noticing any difference in my pain levels, and I kinda feel like my emotions might be a bit more intense? Last night I certainly had a bout of frustration with technology and drawing apps (I really want to work on comics again and I feel like my tools are actively getting in the way!) but I’m feeling much more even-keeled today at least. Drowsy a lot though.
This is certainly an interesting time for me to be experimenting with my neurochemistry, as I only have a few days left at my current job and am also trying to ramp up on some projects at the AR startup while also juggling an interview process with a well-known and generally-beloved non-profit corporation that I’d love to work at – and so far that’s been going really well! I just hope my brain has stabilized again by the next interview, which is yet to be scheduled. Anyway I’m waiting for that to happen before I go up to 3x100mg of gabapentin.
Oh also I’m finally making progress on redoing my kitchen, which is way overdue. The previous owners had done a really cheap, low-quality job of refurbishing it about 10 years ago, and it’s all been falling apart. I’m taking the opportunity to finally fix some long-standing issues with it, like a lack of storage (caused by a ripple effect from a way-too-large sink) and also switching to a smaller refrigerator and dishwasher (freeing up more storage space). Also going to finally get a new range, with such perfect timing since the oven in the existing one has finally given up the ghost for good. Unfortunately there’s only one range available that actually fits in the space (due to the odd venting configuration) and going with a different solution would require a lot of compromises and be way more expensive (due to the aforementioned odd venting situation), but still, I think everything will be better in the long run.
In any case, given that I’ll soon be working from home most of the time again, it’ll be good to have a space where I can enjoy cooking for myself again.
(I’m also looking forward to getting back in the habit of buying bulk produce and unbutchered meat at my favorite restaurant supplier. And probably doing more sous vide again!)
So, the first two dosage tapers on my nortriptyline (40→30 and 30→20) went off without any trouble, but going down from 20→10 was really hard, to the extent that I decided to go back to 20 and keep using it for now. Basically, I had massive SNRI withdrawal symptoms, and also ended up being in severe pain all over. After two days of that I decided that maybe the nortriptyline is doing something for me after all, just not as much as I need it to, and went back to 20mg/day. I’m still feeling pretty hecked up from that so it’ll probably be a couple more days until I’m back up to where I was before.
Supposedly it’s okay to take both nortriptyline and gabapentin, so maybe I’ll try combination therapy once I’m back to my previous homeostasis (which was livable but not great).
Meanwhile, I really hope I’m able to do a song this weekend… it’s a gift for someone and I need it to be done by Monday, and I just plain haven’t had time to work on it.
Wow, I’ve been traveling for most of the past week and a half. Aside from a brief stop back in Seattle between IndieWeb Summit and visiting San Francisco for family gatherings, I’ve mostly been away from home since June 28. Yikes.
I didn’t really get to see a lot of friends on the San Francisco side of things (although I had some good times with my brother and my friend Mark) but that’s okay, since I got a lot of stuff done on Publ. Or, specifically, on Authl, the authentication layer, and the Publ integration with it. I have sign-in by email, IndieLogin, and Mastodon working! I will also probably add direct auth for IndieAuth at some point, now that I know how easy it is to implement an OAuth basic authentication flow. Hopefully soon I’ll have friends-only entries going up on this site!
Pain-wise I’ve been doing a lot better. I’ve been tapering off the nortriptyline, but I’ve been taking magnesium supplements. I still hit a crash point in the evening pretty easily, so it’s not like this has, like, solved everything, but it’s at least doing more for me than the nortriptyline alone was. I’m currently at 20mg and taper down to 10mg tonight, so this is where I’ll probably start to see if it really was a placebo early on.
Gender-wise, something rather interesting has been happening this trip: I’ve been going into the men’s room as usual (because when I travel and am in “boy mode” clothing I don’t want to cause a panic), and pretty much every time, someone’s taken it upon themselves to point out that I was in the men’s room and redirected me to the women’s room. At the same time, I still keep getting “sir"ed a lot, although I don’t know how much of that is people changing their mental alignment for me after they hear my voice. (Probably a lot.) I don’t feel like my appearance has changed at all over the past year, so I dunno what’s going on there.
Also gender-wise, a lot of people have been respecting the use of she/her pronouns for me, and that just feels… off. Still. I think I’m back to thinking of they/them as my primary pronoun. Honestly, the main reason I switched to she/her was because if I was requesting they/them, people would just treat it as unspecified and still default to he/him. I think my way of specifying pronouns is going to switch to "they/them, but she/her is fine.” Because if someone’s going to misgender me I’d rather it go to the femme side of things.
And a really cute thing happened at my nephew’s 1st birthday party: Camille, one of my nieces (who just turned 6 yesterday), wanted to get to know me better, and the first question she asked me was, “Are you a he, a she, or a they?” And I sort of fumbled over things and I eventually said “it depends but ‘they’ and she are ‘fine.’” Anyway, I wonder where she picked that up from. Wherever it was, it fills me with hope for the future. It’s also what got my mind grinding away about, like, which situations call for which pronouns. I think generally it’s they/them for folks my age or younger, and she/her for folks who are stuck in their ways regarding “proper” English.
Anyway, I guess that’s all for now. Unless something else occurs to me in the next
hour fifteen minutes, apparently before my flight boards.
Edit: oh yeah, I think I need to switch to a backpack as my only conveyance. They’re kind of cumbersome for keys and wallet and stuff but purses are heavy and lopsided, and having both a backpack and a small purse is really awkward. My current backpack is great for just carrying my laptop to work but it’s garbo for actually organizing all my needs. My larger purse carries my iPad and all my other regular needs but it hurts my back after a whole day of using it. Any recommendations for better backpacks (ideally ones which are femmy and have room for an iPad, a laptop, some sketchbooks, and makeup et al) would be appreciated. (The preceding Amazon links are affiliate links.)
Edit 2: oh and another thing: fuck all the plastic straw bans, seriously. I’m gonna start just carrying my own plastic straws with me everywhere. I swear, people see one injured sea turtle and suddenly all people with disabilities and sensory issues just get completely thrown under the bus…
Edit 3: oh god only 4 weeks until my next big trip why is everything happening all at once
So, the last few days have been feeling a lot better overall. I’m not sure how much of that is reducing my nortriptyline dose or how much is because I’ve been taking magnesium regularly. But either way, I’m just like… in less agony. My wrists still hurt most of the time, especially after I’ve been working for a few hours, and I’m still driving to work more often than I’d like, but all in all I’m feeling, I dunno, better?
I was in a pretty dark place about a week ago and now things are just feeling like how they are on average for me in general, so to me that’s a pretty big improvement.
This weekend I’m going down to Portland for IndieWeb Summit and I’m looking forward to it. Hopefully I can improve my understanding of the current ecosystem, and maybe make some contributions to it which are important to me. In particular it’ll be nice to chat with Aaron and Jamey about our respective areas of overlapping interest, and talk everyone’s ear off about Publ and what I’m trying to do with it. Maybe I can even get others to want to contribute to it! Also definitely looking forward to meeting Jacky, Darius, and everyone else I’ve interacted with in IndieWeb stuff!
Last night I had another mini-spiral, brought on by making a joke in someone’s chat that didn’t land at all well. Which set off a cascade of bad intrusive thoughts. But I’m over it now.
I did decide from that to cut down on the spaces I’m chatting in. I’m spread too thin and need to focus my attentions on the things that are important to me, rather than the things that simply take up time.
Today the Dove Self-Esteem Project posted another Steven Universe short, this one about social media, and it reminded me that I’m long-overdue for cleaning up my Twitter follows. Given that I have, um, rather a lot, it’ll take me a while to KonMarie my way through them, but I think it’ll be worth it.
This also comes back to a lot of what I’m dissatisfied with in social media and modern communication these days. Everything’s about instantaneous updates and push notifications and micro-posts and conversations and so on. It’s a big reason why I’m not a fan of ActivityPub. It’s also the part of the IndieWeb focus that I’m less thrilled about (granted, IndieWeb is about a lot of things, and it’s not like I have to participate in every part to still make a meaningful impact). I keep saying how someday I’ll get around to writing a blog entry about impedance mismatches between what I like about blogging and the ActivityPub/Webmention/etc. world. This isn’t that entry.
Anyway, this is the… third? I think? day of my nortriptyline reduction. Which is to say I’m still at 30mg. My doctor agrees that we should try something else. Gabapentin will probably be the next thing I try, since it’s something that a lot of my spoonie friends have said works well for them (with caveats). I probably won’t be starting on that until August, though; it’ll take me a few more weeks to taper off nortriptyline, and then I’ll be doing Song Fight! in Madison (and hopefully not being in complete agony between the travel and the playing guitar all weekend). Meanwhile I think the magnesium might be helping as well.
Tonight I did practice a bunch of my Song Fight! material and actually managed to play for a decent amount of time without suddenly finding myself in agony. Which was a nice surprise. So I’m feeling a lot more confident in being able to play a full set in a month. And meanwhile I’m still doodling around with music for games and stuff. So maybe this is a good sign of things to come.
I guess I’m feeling cautiously optimistic for now. Which is better than how I felt two days ago, I tell you what.