Today was the beginning of a string of appointments to become established with a new team of doctors in the city where I have relocated. Immediately upon arriving via cab, I knew that I was wasting my time.
The building was old, maybe built in the ’60s or ’70’s, and did not have automatic doors (first clue). I took the elevator up to the third floor, and arrived in a dingy hallway with sad puke green carpet. A sign in the elevator banks told me that this floor included plastic surgery, physical therapy, neurology, gynecology, hand surgery, general surgery and pain management. Picture this: All of those specialties crammed behind two closed doors, with only two receptionists to check patients in (second clue). I’m used to going to offices where neurology takes up an entire floor and I’ve never seen a list of thirteen-plus specialties squeezed into one space. By contrast, all of the good doctors a) have cleaner floors, and b) charge more, and c) are more up-to-date on research.
I arrived with all of the copies from various doctors and notes from St. Joseph’s Hospital in Phoenix, because I (correctly) guessed that the huge stack of paperwork still hadn’t been scanned into the system so all of the other doctors can see it. I spent about ten minutes total with the doctor. Out of all of the information I provided to her, she asked me repeatedly why I had a shunt, since I didn’t have a diagnosis. I told her that it was obvious after the repeated lumbar punctures that I needed to have something continuously take the fluid off of my brain. I mean, at some point, you have to go with what you see, even if you can’t put a name to it. A name is just a name. A diagnosis is just a diagnosis. I’m a complete person, which also means that I am complex. It’s been five years, so I’m not surprised that a diagnosis is still evading all of the medical staff.
In the end, she threw up her hands and said she had absolutely no idea what was happening with me, but she would be happy to send a referral to any other physicians of my choice. To me, those were the magic words, because I had discussed one doctor in particular with one of my sister’s employees, and it turned out that he would only take patients on if other doctors made the referral (no matter which insurance company foots the bill).
As I suspected, it was not yet time to exit the Magical Medical Mystery Tour – certainly not under that roof, anyway.
Let me explain one more concept to you, and that is of the Carousel of Crap. We first started referring to the Carousel in my former work group as we faced some very specific challenges regarding office politics. The Carousel of Crap is the ride we can all relate to. You go around in circles, the music is a little too loud and whiny, you are nauseated because you ate a little too much cotton candy, you can’t get off because the ride is still moving, and there is shit flying everywhere.
I feel as if I have made a stop at the Carousel while on this tour. I can’t get off, I’m a little sick to my stomach and there is shit flying everywhere. I have to explain everything from scratch. I have to deal with doctors who aren’t interested in reading about my case. I must do my own research and try to find better specialists who are further away from my home base (read: more expensive cab fare). I’d like to tag out and have someone else be me for a while so they could find out what it’s like to be a rock star in the rare and difficult world.