You often hear at the end of a standard news story on the umpteenth car collision of the week, “no life-threatening injuries.” Well, those “no life-threatening injuries” in me are causing me to still be seeking medical help 10 years later, partly because traumatic brain injury (TBI) health care is so fragmented, so little understood, and a nightmare to find the right specialist to help you. Too often, GPs don’t have a clue who to send you to, neurologists think you’re hunky dorey if you know who the Prime Minister is and your skull isn’t caved in, and most medical specialists know nothing about TBI — and so, for example, you go see the cardiologist for heart problems but because he knows nothing about TBI and how it affects the heart, he doesn’t fully understand the problem and can’t help you beyond tossing you a prescription that will sort of help, which is where I’m at.
So this week I entered the Toronto Rehabilitation Institute on University Avenue for help with high body temperature, high heart rate, high blood pressure, bad sleep (man, I’d kill for good sleep), water retention that goes away, raising my hopes, then comes right back, bloody thing, plus much more. I had received my one-on-one outpatient neurorehab at the TRI Rumsey Centre, a very nice, quiet place near the CNIB, and hadn’t been in the downtown TRI before. I walked in and wanted to turn right around and walk out again. Perhaps it was my own desire not to have to tell my story one more friggin time or because I didn’t feel I belonged, this couldn’t possibly have happened to me, or because for too many people with TBI, life is greatly diminished, dreams tossed after the injury, and I felt that in the air. But I kept going, into the elevator and up to the designated floor. I ended up telling my story twice, once to the nurse who took a quick history while I struggled to understand her through her thick accent — and to have her spell COLD-FX right — holy cow, was that irritating, we went through CODE, CODA, COLD, COLDA, COLDAFX — OMG, haven’t you heard of this before, I felt like screaming at that point! — anywhoo, I told my story once more in detail to the resident who looked through the doorway of the exam room I was waiting in, to ask whom I was waiting for. Oh brother. After waiting for the third time, the physiatrist came in with the resident straggling behind. She said I’d had a tough time of it — at last somebody understood! She went on to say that my symptoms must be “uncomfortable” at the same time as I said “uncomfortable.” I’ve never been in sync with a doctor like that before! Unfortunately, though she knows what the problem may be and has heard of the same symptoms in her other patients, she’s not the specialist to investigate it fully. She feels that many of these symptoms may be because the pituitary was knocked around during the car crash that caused my TBI. I need to see an endocrinologist, she told me. Grooooaaaaannnn. She knew my antipathy to endocrinologists, but this one sub-specializes in pituitaries, is kind, knows brains injuries (bonus!), and listens well. I like that: listens well. And so I agreed. What else am I going to do? Say no, and continue to be uncomfortable? No way.
While I wait for the appointment to be made and the many months of waiting (because, let’s face it, seeing a specialist quickly is pretty much impossible), I have more blood tests to have done. Oh joy. All the doctors will be cc’d on them, which probably means finding the one doctor who actually got the results, get them myself, and fax away to the others because what would good health care be without me having to do the work myself.