Thursday night, Mr. V had an audition for a play at his college. He ended up needing to stay pretty late (which was great!), which meant that I spent a lot of the evening laying or sitting around on the floor of the Performing Arts building (weirdly, this building doesn’t have any seating inside, and outside is just concrete steps). When I got up, my lower back and hips were suddenly in agony. I had to stop a few times walking back to the car and Mr. V finally had to just go get it and pick me up. That night I was in excruciating pain and it hadn’t gotten better by Friday. I went to work, but had to leave after two hours because I was biting back cuss words and tearing up at my desk. (And I don’t spend much time at my desk—most of my day is walking around with students and such.) I made an appointment to see the doctor I was supposed to see on Wednesday.
When I got there, I found that he had actually read my chart! He knew about the list of bizarre health problems I’d had in the last year or so and asked me about them. He took my concerns seriously! Wow! Two in a row! He seconded the referral to rheumatology (and we got it corrected–apparently, the office had marked it as internal, rather than external, which meant I might have had to wait months and months for an appointment because the specialties clinic is always severely overbooked). He also gave me a prescription for prednisone and ordered some bloodwork to check for overt signs of chronic infection. He said that if whatever this is is autoimmune/rheumatological, it might respond to prednisone and that the response would probably be quick and significant. Though the blood tests he could order wouldn’t be as complete as a rheumatologists, they might indicate whether autoimmune disease is likely, though a negative result wouldn’t necessarily rule that out.
I don’t know a whole lot about autoimmune diseases. I have a pretend-aunt (one of my mother’s oldest friends) who has lupus and my sister has Sjogrens. My ex-husband had a friend with RA. I know that lupus has an extremely broad range of symptoms, but I don’t have many signs of RA besides joint pain.
I don’t have visible or palpable inflammation, either, but my mom (who has been a nurse for 50 years) explained that inflammation can sometimes be internal and therefore not immediately apparent. I’ll read some more about autoimmune issues today, though, since specialist doctors often use language that non-doctors don’t understand when meeting with patients and then act like jerks when you ask them for clarification. I’d rather have at least a little familiarity with the language before I go in.
Of course, if you look like you know TOO much, they immediately brand you as a hypochondriac who has spent too much time on Web MD and dismiss your symptoms because they assume you’re just listing off stuff you read on the internet, rather than things you have actually experienced. This is infuriating, because I know that at least for me reading about these issues gave me clear, concise language to describe experiences I’ve had when previously I just flailed and babbled at the doctor’s office. It’s much easier to say, for example, that your knee subluxated than that it hurt really bad, felt tight and weird and then sort of snapped or popped into place again but still felt strange and didn’t work right… Doctors almost never take the time to listen to rambling descriptions of things, so if you can’t get their attention with something that sounds “real” immediately, they lose interest and start thinking of ways to shoo you out of the office. It sucks that you have to be so careful, so meticulous with your language when talking to a clinician, especially when your brain is foggy and exhausted, but that’s how it is. I know that I am very privileged to have the education and verbal facility to do this pretty consistently and easily. It’s not so accessible a skill for people who speak a different language from their doctor, who have lower literacy skills, who become really anxious at the office…
Anyway, I took my first dose of prednisone with breakfast, since I was told to take it in the morning with food to avoid sleep disturbances, etc. I’ll write about the results in here later this weekend.