How I’m doing
I feel like it’s been a little while since my last checkin post so let’s do one now, I guess.
Rambles that are fluffy, by fluffy
I feel like it’s been a little while since my last checkin post so let’s do one now, I guess.
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.
So last night I kind of hit rock bottom, in that I was incredibly depressed and ruminating about every single mistake I’d made in life and so on. I had a good cry and went to bed at 10 PM (and didn’t use my CPAP because my nose was all stuffy), and then the next morning woke up at 6 AM, still feeling kinda like crap, and I stayed in bed until 7:30. But when I got up I felt better, and I ended up going to the grocery store at like 8 or so and bought stuff for making a decent breakfast for once.
Today was basically a self-care day, and I think between having reduced my nortriptyline dose, having gotten a full 8 hours' sleep, not having used CPAP, and having been taking magnesium supplements, well, at least one of those things helped out. And today I was… well, not pain-free, but lower pain than I’d felt in a while. This afternoon I ended up taking a brief walk and managed to go a lot further than usual, too, although it was still only like a mile total. But I didn’t feel completely worn out by it.
Early on when I started using nortriptyline I seemed to be having some results but I also admitted it might be a placebo. Over the last four months since then it’s become more and more clear to me that it isn’t actually helping me with anything at all.
It’s supposed to make me sleep better but my sleep is just as restless and terrible as ever.
It’s supposed to help me downregulate my pain but if anything my pain response has only gotten more severe.
I’m also dizzy and tired all the time, and have pretty much constant headaches.
I thought maybe it was time to increase my dose, so I did a bit over a week ago. And the last week has been even worse than it was before I started on nortriptyline to begin with.
So, it’s clearly not working for me, so I’ve started to taper off of it. Probably really bad timing for it what with IndieWeb Summit next weekend and then a week of visiting family immediately after, but I’ll still be on a dose of it during that (I’ll probably step down by 10mg/week).
It’s frustrating that this hasn’t worked out, and I was really hoping to have something that works for me by August but hopefully I’ll figure something out.
Over the last few days I’ve also started taking magnesium supplements again; I remember it helping me somewhat with anxiety a few years ago, and there’s considerable research which shows that it’s actually fairly promising for some. And between reducing my nortriptyline dose and starting back on magnesium, I’m feeling somewhat better today, at least, although that could very well be placebo effect combined with the fact I did basically nothing yesterday.
I want to be able to get back into doing the stuff I love doing. I miss making comics and being able to play music and even being able to be even vaguely functional at work. I’m determined to find something that will let me get my life back.
Let’s see, where am I at right now…
Sleep: I got a weighted blanket on Meh. I’ve slept with it two nights. First night my sleep was aborted because of a… thing, second night I slept pretty well under it and woke up sore in the morning as if I’d been lifting weights for the last several hours. Interesting.
My new CPAP mask has been working pretty well for me. Although somehow I managed to not only take it off but take it apart in my sleep last night. Wat.
The… thing: I was feeling a mysterious pain in my left leg and hip starting on… Tuesday, I think? and it was getting worse and worse, and felt a lot like the DVT I had back in November 2017 which threw a clot and turned into a pulmonary embolism which wasn’t exactly a fun experience that I have any interest in repeating anytime soon. So I went to the ER to get it checked out, and it turned up… nothing. So, good news, no DVT. The doctor suggested I just take it easy for the next few days, which I am trying to do, and oddly enough I’m feeling a lot better, go figure. Also I’m glad I’m with Kaiser because the whole thing only cost me $15.
But it’s hard for me to take things easy because I want to get my home clean, because my birthday is coming up soon and I am intending to host a completely unrelated pizza party at my home. (Incidentally, if you are in the Seattle area and are interested in pizza and you think I know you well enough to let you into my home, let me know and I’ll maybe extend you an invitation to the party!) Fortunately a friend is coming over tomorrow to help me out with the cleaning stuff (for which I am incredibly grateful!) but I am oh so very tired. So I mean I’m taking things easy at the moment, but I’d rather not.
Hm, it’s been a while since I’ve posted anything of substance. I guess I could check in for those of you who still read this for whatever reason.
So, just an update from my last bit on discontinuing my CPAP. I feel like I’m back to where I was before the CPAP started causing problems, and I’m also up to 30mg of nortriptyline and that’s feeling fine. I also heard back from the sleep clinic today and while the doctor still hasn’t had a chance to go over my sleep study (I guess she’s been out of the office for some reason) the clinician agreed that I should stay off CPAP for now if I’m feeling better without it.
So yeah the last um… two months have seen my fibromyalgia getting worse and worse, and my sleep getting worse and worse, and my pain getting worse and worse, and me just plain feeling like garbage and falling apart and constantly falling asleep throughout the day.
I still haven’t heard back from last week’s in-lab sleep study, but finally I decided enough was enough and two days ago stopped using my CPAP.
Two days ago I thought I might have to cancel all my weekend plans. Today, however, I felt absolutely fantastic, and did those plans and then some. And I still feel fine.
I am pretty sure the CPAP has been doing more harm than good, and I need to make the sleep doctor understand that while one metric (AHI) was going down, it’s only because the more important metric (amount of actual sleep managed) went down moreso.
Like, yeah, I wasn’t suffocating in my sleep, because I wasn’t sleeping.
Anyway. Tomorrow I will probably stream the iPhone battery replacement at, say, 2 PM PDT; if you want to see me possibly destroy the only phone I have which works properly, follow my twitch channel and “ring that bell,” as all the YouTubers say.
And I hope that with this newfound state of feeling pretty okay I’ll be able to start making music and comics (and therefore streaming!) more regularly again.
It’s April 1, and nobody seems to have noticed the little joke I put on my site, or at least didn’t react to it. Which is fine, it was mostly a last-minute commentary on web UX patterns and so on.
Anyway! It’s been a few days since my last post and I’m feeling somewhat better right now, so I’d might as well share what’s changed.
Ever since my diagnosis I was doing so much better, because I was able to practice self-kindness. But over time I’ve been slowly ramping up on doing more stuff, and now I’m back to trying to do all the things, and the amount of time I can do all the things gets shorter each iteration. So now I’m back to being in pain and being frustrated and feeling ineffective at everything.
I’m not sure if the medicine isn’t working after all or if I’m just expecting too much out of it; it’s probably a bit of both.
There are so many things I want to be working on but I’m just too tired to do any of them. I haven’t worked on music in a while – when I was so looking forward to getting back into streaming – and I’m coming up with things to do on Publ faster than I’m actually doing them, and am only really focusing on stuff that directly benefits the day job. And forget about comics, even though I really want to work on Lewi and a Unity Book 3 story.
I’m tired of being tired, and it’s useless to feel useless. I need to remember self-kindness.
So, whatever positive effect I’ve gotten from the nortriptyline isn’t enough to make up for my current baseline pain levels. At least I’m able to get out of bed again (unlike a week ago) but holy moly do I fall into agonizing pain after not doing a whole lot. This weekend I wasn’t even capable of doing my usual 3-to-5 miles of walking a day, and I’m thinking tomorrow I might end up having to take a bus or even a Lyft to work. Very frustrating.
Also, lately I’ve noticed that the extra weight of my iPad in my purse is taking its toll on me. I should probably switch back to using my backpack as my main conveyance; it’s heavier but at least it’s symmetrical and puts the stress on my back rather than my shoulder and neck.
On the plus side, I’ve finally gotten my CPAP working well enough for me. I ended up finding a decent video on how to adjust the nasal pillows and those have turned out to be much more comfortable, given a second chance. The face mask ends up being too disruptive for a bunch of reasons (the slightest movement makes it leak around the sides and I have no way of scratching my nose without hecking the fit up) and I somehow managed to lose the nasal mask (which was nearly as bad as the full mask anyway) so the fact that I’ve gotten the one I’m “supposed” to be using to work reliably and comfortably is nice.
I still feel like it disrupts my sleep somewhat, though. I hope that’s just a matter of something I Need to get used to. Hopefully I’ll eventually start getting reliable deep sleep on it once I’ve fully acclimated.
Anyway. Being up this late and typing a blog post isn’t exactly helping. But I figured an update was in order.
So, Friday I took a day off from my day job to go out to Quincy, WA to visit the Quincy Valley Historical Society and Museum, a farming museum which the AR startup is doing an app for. It was an interesting trip and I learned some stuff, although mostly we were there to guide the filming of greenscreen footage that’s going to be part of the app.
Quincy reminds me a lot of Las Cruces, where I spent a total of 8 years as a college and graduate student, only it’s even smaller and there’s no university.
Anyway, Friday night I didn’t sleep particularly well, then Saturday we drove back and after a brief nap I went to a local Twitch streamer meetup and met a bunch of people. Which was a good time and I made a bunch of contacts, but unfortunately the combination of that with the previous day meant I was already pretty much at my spoons limit.
Then Sunday, because of the dumpster fire that is Daylight Saving Time, all those dirty spoons got thrown into my garbage disposal.
On the nortriptyline front, I’m up to 20mg/day and it’s feeling fine. It hasn’t solved my fibromyalgia forever (and after a day of typing and whatnot I’m still in pain, and my pressure points are still indicative of fibro) but it’s helping me a lot all the same. An unsurprising-but-nice thing is that it’s also vastly reduced my anxiety, which isn’t too surprising since that’s one of the on-label uses of this medication that I’m technically taking off-label. Does that count as a side-effect?
On the CPAP front, I’ve switched back to the nasal mask and it’s actually working pretty okay for me. I think the machine has finally learned to reduce its pressure because I’m a lot more comfortable throughout the night, although I still end up waking up at around 4 AM and taking it off so I can scratch my nose. Still, I’m generally feeling a lot more refreshed in the morning. I just need to get in the habit of putting it back on after I wake up and take care of the itching.
Also my cats have gotten used to it, which is nice.
So I’ve been on nortriptylene for nearly two weeks now, and so far it’s feeling pretty promising. I’m still at the 10mg dose (I’m supposed to increase to 20 in a few days) and while it hasn’t completely solved my fibromyalgia so far (not that I’d expect it to), it’s definitely helped me out a lot.
In particular, while I still feel pain after a full day of work, it just feels like something that’s present and that tells me that it’s time to take a break from things, rather than putting me into extreme severe agony.
Basically I suspect this is what pain normally feels like to people who don’t have this disability!
I still have some level of fatigue in the morning (and much more later in the day) and I’m still needing to manage my spoons – that’s not something that is likely to ever go away – but even this early and at this low of a dose I feel like I’m heading in the right direction.
Only too late did I realize that trying to adjust to a CPAP machine while already adjusting to a brain medication (that has weird effects on sleep) means that I am once again doing things on hard mode. Oops.
So far I’ve had two nights with the CPAP. The first night I didn’t get any real amount of sleep while on it and ended up taking a nap after I “got up” in the morning. The second night I did a bit better when I stopped worrying about paying attention to my breathing, although that’s hard to do.
Probably the weirdest thing about a nasal CPAP mask is that if you open your mouth, the air gets forced out through it and causes a sort of reverse snore. And it feels really weird. So if I need to talk to a cat, for example, things go strange.
Anyway the lack of sleep has made me feel like I’ve gotten a pretty big setback with chronic pain stuff; the day before CPAP, I was feeling pretty good, and over the last two days my major chronic pain has come back all over and in a big way. I’d hold off on the CPAP for now except insurance will only pay for it if I average 4 hours per night over the next two months, and I feel like in the long term CPAP is much more important for my pain stuff than nortriptyline probably is.
If tonight doesn’t go better I’ll probably go without CPAP tomorrow night though, because I have to be in good shape pain-wise on Tuesday (since I have a couple of big tasks at work plus I’m getting a bunch of cavities filled in the afternoon).