So, I’ve not exactly been the best at updating things specifically related to my chronic illnesses, in a sense of: “This is what’s happening with my chronic illnesses opposed to my life with chronic illnesses in general”. So it’s a good time to do just that, since yesterday I had a visit from my (amazingly lovely) GP, who really does take excellent care of me – when I’m able to let him.
The social anxiety thing makes it difficult to see him and I’ve been especially bad this time. I’ve noticed new/developing symptoms for maybe around eighteen months now (I know, I know!), mostly related to new pains that may or may not be related to the fibromyalgia or the M.E.
But I managed to arrange the appointment (always a home visit, because Dr S is literal stardust formed and shaped into a rather tall young man with knitted jumpers and very little hair) and then subsequently managed not to cancel it.
He’d been needing to do a medication review with me for some time, so we got that out of the way first. I’d already stopped taking Pregabalin, which I’ve now told him. He fiddled with another of my meds, increasing the dose slightly. Then we talked about the things I’ve been dragging around for almost two years (yes, I know).
I’d been hoping that, from this appointment, I’d be able to steer the conversation towards two things: the possibility of at least testing for autoimmune disease, and also, the suggestion of another referral back to a rheumatologist.
Both of these happened, without me needing to prompt the conversation, which is fantastic for my anxiety. We talked about my hands and my hips, but he examined only my hands since he knows touching me is difficult (he tends to leave those examinations to the specialists so as to spare me a stage of prodding). He agreed that they seemed swelled and uneven.
Then the part I’d been dreading. The autoimmune discussion. I have what I suspect to be a malar rash that has been developing for some time now, and although I’ve read into it and have some ideas of what it might (or might not) be, I’m always very nervous of trying to say things directly to my Dr. I don’t want to seem pushy or know-it-all and communicating with people in this way is hard.
We mentioned the rash, he saw the rash (this was kind of big as I’d been increasingly wondering if I was imagining it or just seeing things that weren’t quite there, so for him to acknowledge it was a Thing was reassuring), and although it could be a side effect of something, it also might not be. So we’re adding blood tests relevant to autoimmune disease to the whole smorgasbord of tests to be done.
He wants a full range of bloods done, since we’re basically starting at the beginning of the diagnostic process to tackle my new symptoms, since he’s not happy with simply saying “It’s your fibro” and having done. That’s exactly what I was worried he would do! I’ve heard so many horror stories of people having one diagnosis and the Dr reusing to consider more.
But then if I tally up how many of these are in America… Well. There we go. Health system from hell and say no more! (Yes, I know there will be similar cases everywhere, but I’ve, only the whole, had excellent experiences with my doctors.)
We’re taking the bloods next week when he comes again, and depending on what they do or do not show, I’ll be referred again to the panic clinic I didn’t manage to attend, as well as/or another specialist clinic that might be more suitable.
I don’t know what I’m expecting to find. I think I have rheumatoid arthritis. But it could just as easily just be the fibro. Of course. But this was a condition ruled out by the first GP I saw, who unfortunately, was shit. Apparently I was “too young”. I expect that millions of spoonies have been told they’re “too young” for all the pain they report. It was never really explored as a possibility.
Well, now all I need to do is get through the blood test visit next week, and then try not to let my poor anxious brain magic up all manner of things that could be wrong, including but not limited to, proof of faerie blood and therefore revelation of my identity, some rare disease apparently contracted from a flying space unicorn that visits on a new moon, or, in fact, anything else outlandish enough that I can think of.
In related news, I’m not going to be well enough to attend an event I ought to have been going to, the Split Worlds Masquerade in Bath. I’m devastated, but I really should have known that an event in May was an oversight. Spring is the very beginning of flare season for me. So, I have three Mundane tickets that need to find new homes. Naturally I’d rather sell these, even discounted, because they cost £90 for the three, but mostly I just want them to go to people will might use them. (If you are interested, just drop me a message via my contact form, or just Tweet me. Long shot, but eh.)
So, there we have it: new symptoms discussed and noted and thus behind the diagnostic process.
I have my vampire date next week, whereupon I expect to rather dashingly half faint after having gods only know how much blood taken. If last time is anything to go by, there’ll be enough for a vampire’s three course dinner.