Current goings-on

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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.

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Current state of affairs

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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.

Pain, music, and DDR

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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).

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pain management update

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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.

Pain management

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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).

Followup from yesterday

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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.

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Gabapentin 300mg day 6

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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.

Gabapentin adventures continue

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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!)

Bleah

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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.