Back in Seattle

This morning I decided to leave the AirBnB at around 9:30, and I got home at around noon. My new iPhone 12 mini was waiting for me (along with an extremely needy Fiona, who needed a couple hours of lap time), and after getting the iPhone set up I went for a nice long walk, and ironically got more exercise today than I did the whole time I was in Port Angeles (a city I ostensibly went to in order to get plenty of outdoor exercise). Oh well.

After dinner I realized I’d left my fancy Nalgene bottle in the fridge at the AirBnB. Dangit. Not really worth trying to get it back (shipping probably would cost more than just getting a new one, I think?), although I let the hosts know in case they want to figure out how much it would cost to ship it or if they just want to keep it for themselves. It’s mostly frustrating because it was a gift from someone around 10 years ago (when my major health issues were starting up and it seemed like better hydration would be the key), but they gave me two of them and I still have the other one. Plus a pile of other water bottles I’ve picked up over the years. Mostly I hate accidentally losing thoughtful gifts.

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Ugh no I need to get off nortriptyline

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.

Nortriptyline updates

I’ve been at 30mg of nortriptyline for 6 days now, and I’m trying to figure out if this is how I felt on it before. Going through my nortriptyline tag I see that I actually was up to 40mg on my initial tapering, and after sitting there for a while I decided it wasn’t doing enough for my pain and that’s when I tapered down to 20. In one entry I complained that it wasn’t helping my sleep at all, and how it was making me constantly dizzy and tired and headachey.

This time around it’s definitely helping my sleep, and I’m not dizzy, although I am quite tired (despite actually getting a full 8 hours of sleep every night, for once!) and today I had a headache all day. Also plenty of nausea. But at least I got a nice long walk in.

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ADHD and fibromyalgia and nortriptyline

Yesterday I finally met with a new psychiatrist (having lost access to my previous one back in, oh, March), with the intention of figuring out what to try next in terms of ADHD medication.

As a recap, the first medication I tried (Concerta) just made me irritable and gave me tachycardia, and the second one I tried (Adderall) worked really well for my brain but also made my blood pressure skyrocket.

Anyway, on Tuesday I had also met with my pain doc and the decision we came to was that we should try increasing the nortriptyline again, since 20mg is doing something but not enough, and I couldn’t really remember why I felt like 30 was too much. He wants me to target 40-50mg for my eventual long-term dosage.

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pain management update

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.

The sorry state of medication reminder software

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.

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Healthcare followup

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.

Medication conflagration

Gabapentin has been raising my blood pressure (and weight) pretty steadily since February, and it hasn’t actually been helping me with my pain issues. Back before I started on it my blood pressure was generally around 115/85, and as of last Thursday my rest blood pressure was 144/98. Which is, you know, pretty darn high.

So on Friday I decided to cut my dose from 200mg/day to 100mg/day, and see what that did to me.

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Bleah

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.

Finally heading home

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

Feelings

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!

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Stuff, and things

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.

Improvement

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.

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Nortriptyline etc.

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.

General life updates

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.

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Progress resumed?

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.

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Backslide

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.

Ongoing stuff

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.

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