I’ve talked about my issues with questioning diagnoses, switching doctors, getting second opinions. I want to be a “good patient” and I, in general, trusted what medical professionals told me. I didn’t suggest tests or labs, I didn’t second-guess diagnoses, I didn’t “fire” a doctor even when I felt like they weren’t meeting my needs.
Being on this journey with autoimmune disease, discussing these issues with my therapist, writing this blog and the book I’m working on, and interacting with others through social media/message boards has helped me begin to move past these issues and advocate for myself. (Along with reading the book The Empowered Patient by Elizabeth Cohen — good book, by the way!)
So, as I talked about a while back – I’m stuck in the “get this test/lab done and come back in two months (because that’s how far out the specialists are booked)” loop. So I’ve been in this loop of appointment to discuss symptoms –> lab or test –> wait for another appointment to discuss the results and to clarify symptoms and update on new/worsening things –>lab or test loop since October. And keep in mind that these appointments and tests are an hour away at the teaching hospital.
I’m in the middle of my two month gap between neurology appointments and I’m a day away from rheumatologist appointment after a 2-month gap. According to my last rheumatology appointment, this one tomorrow is supposed to get me set up for rutixan infusions – a new treatment that we’ve been discussing since my first appointment with him in October but that we haven’t started yet because of this seemingly never-ending cycle I’m stuck in (during which I’ve stayed on the same non-effective treatment of hydroxychloroquine).
During this current gap between appointments is when my muscle weakness has dramatically increased in consistency and severity. I didn’t want to wait until my upcoming appointment to talk about them and end up putting the rituxan off for another two-months while we investigated this latest issue.
So, embracing my new “I have to be vocal and advocate for myself” outlook, I called the rheumatologist last Wednesday and explained that these weakness symptoms are worsening and that if there are any tests he’d like ordered, could he please do it so that when I drive out there for my MRI that Friday I could do them at the same time and they would be ready to review at my appointment the next Thursday.
I didn’t hear back from them that day or the next.
The day after that was Friday and I had a 7:30am MRI appt (after an hour drive – on Valentine’s day…happy Valentine’s day to me!). After the MRI I walked from the hospital to the attached doctor building and up to the rheumatology department. I asked the nurse for a printout of my labs from December (the dr had just released my October results to the mychart system so that I could view them…so we’re probably a couple of months from the December ones being released).
Low and behold, when the nurse came out 10 min later with my printout, she said the Dr had ordered labs for me to do while I was there based on my phone call. (Yet I wouldn’t have known that if I hadn’t randomly showed up there!).
When I went down to the lab I asked for a copy of the orders (so I could know what tests they were doing). The orders had been put into the system (according to the time stamp on them) while I was waiting for the nurse upstairs – so not only had they not let me know about the new lab order, it hadn’t even been done!
So if I hadn’t gone over to their building and presented myself to their office, the labs wouldn’t have been ordered and I wouldn’t have gotten them done before my appt tomorrow and I’d be in another “get these tests done and come back in two months” loop.
Here’s hoping I don’t end up in another 2-month cycle anyway!