just got back from my fifth infusion and so here’s a customary longwinded rambleblogspewthing about what I remember from it
fluffy rambles (chronic pain)
Rambles that are fluffy, by fluffy
On the plus side, my focus is way higher, and my anxiety is the lowest it’s been in a decade.
On the minus side, my chronic pain still sucks a lot, and this is still making it very hard for me to do my job.
It’s still been a huge net benefit for me though. And supposedly it takes a little while for ketamine treatments to have an effect on chronic pain. I’ll get there eventually.
Today I had an appointment with an osteopath, which is basically a chiropractor but with a basis in actual medicine instead of weird quackery. It was an… interesting experience. An overall positive one, though.
She mostly worked on my neck and shoulders, which are feeling somewhat better, and also popped a couple of my vertebrae, which was a strange experience, but a good one. I’m not sure if it’s placebo or what but I definitely feel a lot better now than I did this morning, at least.
She encouraged me to keep seeing my current massage therapist (who I’ve found very helpful) and to wait a few days to see how I feel before scheduling another appointment with her. Unfortunately she (like most medical practitioners) is ridiculously overbooked and the next available appointment isn’t until February (I’d actually booked this one around two months ago, incidentally) but right now I’m at least feeling very encouraged.
It definitely hasn’t cured my pain but it at least feels way more manageable now.
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.
What are some of the things going on in my life? Ugh, where to start.
The taper down to 10mg/day was a bit difficult, but the final discontinuation seems to have gone pretty smoothly. I suspect I could have actually discontinued sooner, and the withdrawal symptoms I was having ont he last few days of 10mg/day was specifically because I was toggling right around some threshold for things. But I’m glad I took it slow all the same, and in any case I feel like the worst is behind me at this point.
I seem to be stuck in an annoying situation.
Short recap: I have both ADHD and fibromyalgia. These two conditions tend to have a lot of overlap (they are both thought to essentially be dopamine dysregulation issues), and both of them have a “let’s try different things out” treatment regimen.
Because of ADHD I have great difficulty in focusing on my work.
Because of fibromyalgia I have great difficulty in focusing on anything other than pain.
The medications which help me with fibromyalgia preclude me from being prescribed medications which help me with ADHD.
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.
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.
I’m in the midst of a really bad fibro flareup lately, and am burning through my sick days at work pretty quickly. It’s frustrating and I need a way out, and something else that I can do as sustainable income.
I’m in a bunch of differently-intersectional support circles, and I’ve noticed the following:
Disability circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my profession entails)
Technology circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my disability entails)
The thin segment of disability+technology together: Doesn’t have any answers either, just sympathy and relatable experiences with not knowing what the hell to do
I keep asking in technology circles to see if anyone knows other jobs that would use my brain without needing to use my body and I keep on having to grow the list longer and longer with preemptions. No, I can’t go into management; I’m not good at coordinating other peoples' moving parts and it’s not what satisfies me as an engineer, and the brain fog from the pain makes this not a thing I’m likely to be able to get good at. No, I can’t go into teaching or training; that has even more requirements and rigidity in terms of my scheduling and I cannot do anything that requires that I be available at precise times on specific days.
I ask in disability circles, and there’s another, different list; no, I can’t use voice recognition software to program (not while there’s shared open-plan workspaces or I’m working in languages which aren’t suited to it – and I usually don’t have a choice of language). I still can’t go into management; it’s a completely different set of skills and not a natural progression. I already have a good ergonomic setup, both at home and at work. And employers don’t look too kindly on me smoking weed all day.
And in the intersectional circle, the only response I ever get is: “I have no idea, let me know if you figure something out.”
I was kind of thinking about skipping this last week because the previous few sessions were feeling not very useful for me, but I ended up going anyway and I’m glad that I did.
Also, I’m not sure if I mentioned this before but if you’re in Seattle, these workshops are available to you whether you’re a Kaiser Permanente member or not! There’s more information about that on their living well classes, including online versions (and they also have additional online resources).
Main topics today:
- Working with healthcare providers
- Weight management (ugh, but don’t worry)
- Looking forward
Oops, I forgot to post these earlier while the session was fresh in my mind. I’m going to have to work a lot harder to decipher my handwriting this time around.
This was the 5th week. Next week is the last one. I’m kind of glad to see it ending. Sigh.
Topics covered this week:
- Depression management
- Physical activity
- Mind management
This week’s topics were on healthy eating, communication, and problem solving.
Week 3’s curriculum covered the Moving Easy Program (a simple but effective stretching and minor strength training regimen), pacing and planning, treatment evaluation, and decision making strategies (both for treatment seeking and for other aspects of life).
Last week’s action plan was to do 10 minutes of yoga in the morning, 4 times. I was mostly successful, but only did it 3 times, as today I slept in from having to work late last night (doing a final build of the iOS app for Borealis).
Throughout today’s session we also got some useful affirmations that I can put onto my affirmation board:
- Practice makes progress
- You choose
- Are you choosing pain?
This week was a lot more comprehensive than the first week, and it feels like a lot more happened in about the same amount of time.
The major areas of focus were: problem-solving, dealing with difficult emotions (especially useful for me right now), physical activity, relaxation techniques, and dealing with fatigue.
A few months ago I signed up for the “Living Well with Chronic Pain” workshop that’s put on a few times a year by my HMO. It’s a six-week course that meets once a week. I figure it would be helpful to share the key insights from each session here, since I know a lot of my followers have similar issues and would like to benefit as well.
The textbook for the workshop is Living a Healthy Life with Chronic Pain (affiliate link). It also comes with a pain-management exercise audiobook on CD.