The Good Doctor

Last week, I had a surprisingly pleasant visit to the doctor. Shocking, really, I mean it, it’s absolutely shocking. Doctors, hospitals, needles, diagnostic imaging, cold exam tables, white rooms, paper gowns, medical students etc. have all been familiar to me for quite some time. And save a few kind encounters it’s always been particularly uncomfortable. Starting out in the medical world at such a young age softened me a bit, but the older I get the more aggravated I get by the blatant invasion of privacy and total lack of respect for a patient as a person. It is rare to go to a doctor and leave feeling like they knew there was a human being, a real person, underneath the gown. I’ve been privileged to see a rheumatologist every 3-4 or 6-8 weeks since the ripe age of 11 years old, and I did really love that doctor, he was the doctor I wanted to be (when I was going to be a doctor) and he still encourages me to be a doctor, likes to tell me the perfect time during my residency to start a family, and it’s written on the front of my two inch thick chart, “wants to be a doctor” next to the “Binghamton University Class of 2012 2011”. As kind as he has been, as loving and truly concerned as he has been, I feel that he has lost sight of me, and after 10 years, my diagnosis has been set in stone though my symptoms, my blood tests, and the course of my disease has greatly changed. It also sometimes seems that I am still a 12 year old girl rather than a 21 year old college graduate. All in all, it’s been a journey of inconclusive and incredibly invasive tests, multiple specialists, tons of prescriptions, a few admissions, plenty ER visits, and some less than, some more than, pleasant doctors.  Last week though I caught a glimpse of the light at the end of this very long tunnel. 

I have found the good doctor. I was asked if it was okay if a resident joined the physician when he came in to exam me. That resident and the doctor also introduced themselves and shook my hand upon entering the room. They sat down thanked me for bringing my previous records and then began a discussion. Asking about my work, what I was studying here, and then about my symptoms, what’s been going on for the last 10 years? Now before I go any further I have to admit that when I arrived at the office I was ready to leave, I felt like I knew how this appointment would go and really I should just leave. Everyone in the waiting room was 60+, well I think that’s generous, probably 70+ with canes and therapeutic shoes. Having a diagnosis of arthritis usually lands me with geriatric patients, like the time I was paired with an 80 year old woman at physical therapy so we could do our exercises together (I wanted to cry) but this was literally an old folks home in the waiting room, it was frightening. They were all looking at me, I think expecting me to be waiting for my great-grandmother to come out from her appointment, and they were all shocked when the nurse came out to bring me in. I was further discouraged when the nurse gave me a gown and a drape to wear for my examination, I know I shouldn’t have been surprised but rheumatology exams involve a great amount of twisting and turning and leg lifting and bending and all things most people wouldn’t do while wearing pants never mind in a gown with the opening to the back. Well to my surprise it wasn’t that bad. The doctor actually moved the drape before lifting my foot to my head in attempt to keep me covered and as comfortable as possible. I can’t say I’ve ever experienced that, an acknowledgement that a patient might not want all their bits exposed to the two male doctors or to the nurse or to anyone in the room really. They even left the room so I could get dressed before the walking and bending part of my exam. Aside from all the niceties of the exam, this doctor was genuinely intrigued in my case. He agrees that it was difficult but he wasn’t willing to just stick with my original diagnosis, which has been HLA-B27 positive spondyloarthropathy for the last 10 years with Anti-CCP positive rheumatoid arthritis for the last 8 months. Both of which have been treated very aggressively, making a proper diagnosis even more difficult now, because the damage that we would expect to see from a normal progression of the disease may not be there because of the treatment. He acknowledged that there are multiple things happening with multiple systems involved, he heard my concerns and wanted to address them. He understood when I said I am looking for better answers than I have been given. He also understood that just because something is ruled out doesn’t mean that my symptoms go away we still need to find the cause and treat. Through the years I’ve been referred to so many specialists with a guess at what I may have, and once they rule that one diagnosis out I am dismissed and no one looks any further. It’s as if because they didn’t see any demyelination on my MRI that my blurry vision and pain and numbness in my arm have magically disappeared, when (obviously) that isn’t the case. I’m going back to this doctor in two weeks, I had blood drawn and a few XRAYs taken and hopefully he can tell me something new. I really think one of the most frustrating things is being sick, all the time, feeling sick, all the time, feeling exhausted, all the time, and not knowing why. It feels weird to wish for them to find something but I just want answers. But for right now it just feels good to be listened to! It feels so good to feel like after all these years, after all these doctors, after all this pain, someone is going to try and actually figure it out. I can’t believe it! So, kudos to you Binghamton.