Now that I’m in my third year of Tysabri I get to see Dr. M four times a year — every three months. Plus side, only two of those visits require MRI scans. Minus side — it’s four times a year I feel outside of myself, unable to articulate myself, overwhelmed by fear.
Yesterday, as John and I made our way back to the car, hot tears stung my eyes and I clutched my paperwork tightly in clammy hands. I’d felt five years old in that office. I’d felt out of my depth, unsure, wrong. It’s a terrible way to feel.
I go to see Dr. M armed with a list of queries typed haphazardly in my phone. I don’t know why I even bother. The answers are always the same. It could be MS. It could be something else. It could just be aging. It could be something different entirely.
Do doctors want us to spend our lives in and out of waiting rooms, forever chasing answers to unanswerable questions? Here’s a referral to a urologist, one for a psychiatrist, another for a gastroenterologist; here’s one for a DIFFERENT neurologist, because that’s not in my realm of practice. Perhaps also a cardiologist?
Clearly, all us sick people have copious amounts of time and energy at our disposal to spend time on the phone (making appointments, haggling with insurance, etc etc), driving to and from all the appointments, following up on treatments and recommendations. It’s a true joy to be told the same thing over and over.
They just can’t be sure. It might be this, it could be that. Have you seen so-and-so yet?
And it’s not just me. It’s my mother, my father-in-law … so many other people struggling for answers, for a direction.
As we approached 95 from 76 I turned to John. “I think we need to make doctor days sushi days. Can we do that?” He smiled and nodded.