Miriam's Health

Miriam said she didn't mind if I wrote about her doctor appointment today.

The office of Miriam's GP made an appointment to see her after the X-ray results (showing polyarticular degenerative changes at the DIP joints - this is not fibromyalgia) from December came back. We were both hoping that she would have something to say about...something? Some kind of progress toward a diagnosis? But it was nothing so informative.

The doctor asked what the appointment was for, so Miriam told her that her office had requested one about the X-rays. She looked at the X-rays and basically said that it looks like rheumatoid arthritis, but the rheumatologist will have to confirm an actual diagnosis. She seemed to think that Miriam would have a diagnosis soon, and I said that I hoped so after three-years-plus of trying. (Rheumatoid arthritis seems less likely than psoriatic arthritis given our understanding so far, but we'll have to see. She isn't a typical presentation of anything exactly.)

The doctor asked how her pain was. Miriam said that it hurts. It hurts enough that without some kind of effective treatment, she's really been considering stopping pursuit of the career she wants and trying to work part time because it's been so overwhelming. (This is why I've been considering jobs anywhere in Canada at this point.)

The GP didn't have any solutions for pain, but did renew a few medications that needed renewing for her, so that's something at least.

Miriam's last lab work was done in December and all of the results have come back *except* one blood panel. It's not clear why that one isn't done yet when the others were done weeks ago, but she was kind of waiting on that to try talking to the rheumatologist again. But today she called to make an appointment anyway and the next one is near the end of February. (I'm wondering whether that panel was somehow missed on the requisition, which would be incredibly frustrating bad luck since it has one of the only tests on that she hasn't had before.)

So that's how all that's going. No real news, but maybe there'll be something from the rheumatologist in a month and a half. Altogether, it also seems increasingly likely to me that this is a post-viral immune condition triggered by Covid infection just after we moved to Europe, though there isn't a way to be sure of that.

I hate that this all takes so long and she's in so much pain so often and there's nothing I can do about it. I'm still angry at the first rheumatologist who gave her a fibro diagnosis and told her to have her GP manage it.

Its hard to ask for accomodations when you have no diagnosis and don't know you need them

And a post from yesterday, while I was at the university campus waiting for Miriam:

---

Miriam is teaching in a large lecture hall that doesn't have an obvious accessible entrance for the lecturer. Because she is still getting a handle on her capabilities, and she's never been in these rooms, she didn't think about asking for accommodations beyond an acceptable chair.

Navigating the stairs down to the lecturer's position with the wheeled cart she uses for her laptop and HEPA filter can cause her significant pain depending on how she's doing that day. The current solution is that I will come in with her, get her stuff down the stairs, then hang out in a little room in back of the lecturer hall until class is done. Then I'll help get her stuff back up the stairs and find somewhere to sit in the room she holds office hours in for another hour.

I figured I'd use the time to work on my queer TotK fanfic, but it turns out there are no power outlets in here for a laptop. I had just figured there would be, given the setting, but no luck. So I'm just sitting here with my phone, listening to a loud 60hz hum coming from what I think is a heater, or an associated junction box. I do see a mystery door here though, and I'm hoping it might lead to a basement that is elevator accessible. If Miriam is up to being here longer, I'll do a little exploring.

ETA: alas, the mystery door just leads to a short hallway to some stairs. There is an elevator of some sort in this room too, but the door is industrial looking and only four feet tall. It's probably for equipment.