This was the day that the ‘team’ came up with my diagnosis of functional dyspepsia. The attending physician, Dr. M, came to see me and provided me with a handout from the internet describing the condition. I told her I didn’t have heartburn. She said I did. I decided not to argue with her as I didn’t want her to pull my tube out. I asked again about my swallowing problem. She called it my ‘perceived’ swallowing problem. I knew that I had to get out of there as soon as I could. I wasn’t happy with the ‘diagnosis’ as it seemed to be a general label applied to a group of symptoms but had nothing to do with a diagnosis for the cause of the symptoms.

It’s also interesting to note how one minor interaction with one nurse gets over-generalized to ‘at times rude to staff’ when I was as pleasant and cooperative as I could be, even when distressed or in pain. I can imagine the discussion at rounds and I know that those things get talked about. I’ve sat through rounds and been appalled by the things that get said. I was always the ‘outsider’ when in acute care as there were so few speech-language pathologists. The bully culture thrives in the health care system, and it affects patient care.

I had several friends come to visit that day. It was nice to see people.

My pediatrician friend came by that day as well. I showed him the functional dyspepsia handout and we talked about it. He was as disappointed as I was about the lack of a real swallowing assessment. He stayed for about an hour and he talked about the pitfalls of internal medicine and why he chose pediatrics for his specialty training. Anyway, he’s super smart and proposed a diagnosis of ‘possible MS’ way ahead of anybody who ‘should’ have diagnosed me. He did it by listening to me over the phone in November. It was highly unusual for me to call both of my doctor friends at home that month with questions about my health but I needed good brains and good ears to help as I was suffering so much with no answers or help.

I’m not sure what this nursing note meant with ‘doctor friends’ in quotation marks. I guess it was beyond imagining that a crazy woman like me had any friends who were doctors! Maybe I’m reading too much into it but I wonder if that was also part of the behind closed doors conversations about me. I hope I didn’t tell any of them about my ‘astronaut friend’, my ‘lawyer friends’, my ‘university professor friends’ or gosh, even my ‘politician friends’! As I had told the nurse, I felt that the weak diagnosis was insufficient, and I felt that way even before talking to my ‘doctor friend’.

I was gaining strength and feeling a lot better. I went for walks around the ward to start rebuilding some lost muscle tone. I was on my way out without any answers.  I was determined to deal with the GI problem first, then figure out what to do about the facial pain. They had started me on gabapentin a couple of days before and it was helping with the pain.