Was looking through old emails for some receipts (the literal kind, not the Twitter kind), and stumbled upon this beauty of an opener:

Date: 2016-12-19.

Have been nursing some chest heaviness, palpitations and shooting pains for 10 days now. These symptoms on their own aren’t particularly uncommon, but a week ago some incredible neck and shoulder pain started to flare up on top of it — and get worse, and worse, and worse; like, all day soreness, pretty much trying to knead my left shoulder (in particular) into not-wanting-to-have-it-surgically-removed.

I have been to the ER for a self-suspected blood clot/heart attack/whatever before, and didn’t particularly want to repeat the exercise. Maybe it was just a chest infection with extra steps? After umming and ahhhing about it for a couple days, worsening, I finally book a GP respiratory appointment. Yesterday afternoon the appointment time arrives.

I have to “I know what it sounds like” to the GP a few times, explain my elevated heart-rate on arrival is probably just POTS (since I was sitting in the car waiting for the all clear to come in, not in the waiting room), explain the pain in my legs is probably just the chronic pain I always have in my legs, and after listening to my lungs (all clear) he directs me straight to the ER. I am thankful to my and Annie’s MSA 900s, and it who told me about them.

Chest XR, RAT, ECG, bloods to check for clot or heart damage — nothing. Everything looks fantastic. Maybe it’s pleurisy. Go home, rest, eat lots of vegetables.

So this is where we’re at!

Entire body aching. Shoulders, elbows (both strong), wrists, fingers joints, back of hand (right esp), knees, upper and lower legs top, back; feet all over. I will run this body into the ground if I have to, not out of malice, but out of love for my own existence, our own, its own existence and refusing to let this sap my quality of life. It is clearly not responsive to either rest and taking it easy, or staying moving and stretching and being active. It is caused by neither, helped by neither. I will rest as much as I like, but then I will work and push as hard as I want. Stimulants and cannabis help me do both, and it will rely on them to help with both. To do otherwise is to waste the gift of opportunity it has.

It is on a mission.

Rheumatologist was distracted and not really listening. He had nothing new to offer at first, but after it was clear I wasn’t game for “what if we try more anti-inflammatories” round III, he suggested a ketamine infusion to try to reset my nerves. I don’t like the idea of a hospital stay but, y’know what? Fuck it, we ball. Consult with the anaesthetologist in four weeks. If nothing else I get to eat hot chip.

Qué sorpresa, the tricyclic’s side-effects ended up prohibitive even on minimum dose; seven weeks was the mark for “increase again and start reducing duloxetine, or abort”, and I have chosen abort. No end in sight for night sweating. Getting a hold of my psychiatrist again to see what his bag of tricks might hold.

Time skips along. I am unsure how I feel about the impressions I leave on this world; unsure about most things. The rise of LLMs at this particular juncture has been really depressing; I am starting to lose my patience to deal with their insertion in my life in any context. The next time someone at work suggests running something through ChatGPT I might just take the rest of the day/week/month off. A good chunk of my industry has fallen for the bait. I was already having trouble taking other people seriously, in general, as a concept. Now I have to deal with them coming off as less interesting than the automata they coo over. Please, tell me about your productivity gains. Tell me about the vibes. Tell me. I am listening.

There are a few things I am able to feel sure about, one of which is this: trans rights are human rights. I don’t run any analytics and don’t often think about my reach, but I have some, don’t I?

May we find the liberation, friendship, and family we deserve. May we become ourselves, unfettered by shame. May our arrows find their mark.

Those who oppose our right to peace, self-determination, and a life worth living, entirely on our own terms – may you eat shit and die.

Content note: pain, bad mental health, health issues.

Six months later, we’re back. It’s sad — we were acclimating well, met our neighbours, started riding all over the country, and then I started to be in pain.

Any kind of pain is bad, but the body part(s) affected really define the flavour of the impact it has, I guess, and this has been the first time I’ve had really significant leg pain. That’s sort of underselling it; it’s sometimes in my knees, usually ankles, feet, and though it seems like it shouldn’t be related, also in my elbows, fingertips, and even the sides of my neck, and it all feels very much related.

Still, for the most part it’s in my lower legs, and it. is. constant. I went back on nifedipine, since a Raynaud’s “diagnosis” last year had me try that and it sort of helped during winter. My hands and feet are always really cold, and they were worse than usual, so I was hopeful it’d help. Estonia only had the “medium acting” variant, and it felt a lot bumpier than the modified-release ones in Australia.

After that didn’t help at all, it was time to see the doctor. And see the doctor I did. And again, and again. And a physiotherapist. And an orthopaedist. Two X-rays, two different kinds of strong anti-inflammatory, three weeks of gabapentin, a month and a half of physio, and three months later in total and not even the slightest improvement. Exercising didn’t help, resting didn’t help. Ruled out referred back pain, inflammation, neuropathy, muscular.

Meanwhile, the time between appointments started to stretch out, I guess as folks returned from summer holidays, and I was just miserable. I hadn’t been able to do much of anything in a long time, and the healthcare system in Estonia was really making it hard. The pain on some days made me want to beat whichever leg was hurting into a pulp, because that somehow was more tractable and bearable.

So we’re back. I’ve had some relief since, in being able to switch back to the modified-release nifedipine, as well as get back on an antidepressant — duloxetine, both for the general sense of despair I’ve been accumulating this last quarter of a year (!), and for its help with ?fibromyalgia. The pain is a little bit more distant, but it’s still there and still getting worse.

Finally getting some blood tests confirmed it’s not something easy (anaemia, B12 deficiency) or obvious (cancer, RF+ RA). My money is on COVID-related vasculopathy, but I guess it’s not so easy to confirm, deny, or help. With some amazing luck, I managed to score an early rheumatologist appointment (someone had just cancelled), which then got bumped forward another week, so that’s now tomorrow.

I can’t particularly have my hopes up — we’re up to 4 months now since this started to intrude on my life. Last time I had a new chronic illness, it took more than a year for it to start subsiding regularly enough that I could start to believe it might abate entirely. (It came back for months at a time, years later.)

And unlike that time, this one isn’t only in my head: my legs and feet are increasingly randomly surfacing bruises that don’t clear up for months at a time. A few days ago while out to therapy, there was a particularly sharp ache across the top of my left foot, and when I got home, I took my shoe off and found that a vein had just turned completely black in a spot right there. There’s a blue patch on the back of my right leg (the one that hurts less on average!) that hasn’t gone away in the whole four months. And as my doctor here said, it’s entirely possible that at the end of all our investigations, I’ll still have this pain to manage, maybe indefinitely.

Which, y’know? That kind of thing just happens in life.