Hello - and any tips for hands?
Hi everybody, I'm here to introduce myself as somebody with proooobably seronegative rheumatoid arthritis, though it’s an odd case that’s puzzling my rheumatologist– I show almost no response to steroids, or anything else, and it’s really stubbornly attacking my tendons even more than joints. I just woke up one morning last fall thinking, "why do my hands ache?" and it’s been downhill from there all over my body. Lately I can’t open bottles and jars – that part isn’t even a matter of it hurting too much, the tendons just won’t move like they need to – and typing is starting to hurt badly enough that it distracts me while trying to work. Ugh. The mind-numbing medical bureaucracy while I’m trying to navigate this is grinding me down, too, but at least it’s heartening to see real people here trying to back each other up. (So thank you all!)
My reason for posting just now (other than venting to people who would get it, I guess!) is to ask what thoughts people have for workarounds or ways of adapting, especially for hands, or what it's been like for you if ordinary daily tasks just aren't possible. I got a tool to open jars recently and I realized there's probably more stuff like this in my future. I've been trying to ask doctors things like "what do I do if I can’t use my hands soon" and the response is basically "shhh don't worry about that I'm sure we'll figure it out and you’ll improve, so, see you in six weeks!" which is... not reassuring. I'm really feeling in limbo right now where we’re taking shots in the dark with different medications but I just keep trending worse, and I'm really worried about where this is headed.
This post is really resonating with me. I'm so thankful for my one hand/wrist ultrasound that "lit up like a Christmas tree," as the tech put it! That radiology report feels like my one hard defense against this ambient cloud of doubt, a sort of wordless "...but you seem fine?" hovering around me. I get the impression from the posts here that I'm not only one pushing against that, though. (To anyone on the receiving end of "it’s all in your head," either out loud or implicitly: no it isn’t, and I’m so sorry you have to deal with that.)
Thanks for reading.