When I woke up this morning, I knew I had an appointment to see a new doctor – a neurologist. I haven’t seen a neurologist since I was probably ten years old. Since I got the diagnosis of Reflex Sympathetic Dystrophy, I’ve spent a lot of time in the waiting room at pain management clinics. There’s no cure for RSD, so pain management was the obvious route, and because these doctors gave me at least a bit of pain relief, we stuck with them and never saw another specialist.
Despite my doubts over the years of my diagnosis, there was never a doctor that questioned it. I would meet a doctor and explain to them that my symptoms didn’t really match those of someone with RSD, and it was like the doctors had on sunglasses and could only see my condition with that color lens. No matter what symptoms I was showing, I had RSD. That’s the trouble with diagnoses: yes, they simplify processes and give a name to the face of someone’s demons, but once you get diagnosed, its difficult to move outside of that realm.
So back to my doctor’s appointment… I was in that kind of mood this morning where everything anybody did or said bothered me. I didn’t want to go to this doctor, and I didn’t want to waste my time. For those of you who have an illness that doesn’t always fit inside the box, you’ll probably understand my frustration. New doctors suck. I hate seeing new doctors, and if my parents hadn’t been in town to make me go to this appointment, I probably would have cancelled it. So I didn’t have the best mind-set going into the appointment, and I expected absolutely nothing constructive to come out of it. I expected to be disappointed.
I was supposed to get a nerve entrapment test done and to do so I had to meet with the neurologist first. The nurse led my parents and me into Dr. Martin’s office after taking my vitals, and at once I liked him. My mom described him later on as that absent minded professor type. She hit it on the head. I wouldn’t be shocked if he was slightly cuckoo, but judging by the huge number of awards and diplomas on his office wall, he is a very intelligent man. I explained everything from the beginning: how the pain started, how I got diagnosed, how it progressed, what treatments I’d had, what my pain felt like now, and the various other things that happen in my body that seemed unrelated but abnormal (like the fact that my feet don’t sweat).
In a split second he dismissed my diagnosis, and I realized I had found my real-life Dr. House. He was slightly crazy and disturbingly bright, but he wants to figure out what the hell is wrong with me. He wants a diagnosis as much as I do, and for that I am so thankful. Not to say that my previous doctors didn’t care whether or not I was in pain, but pain management doctors approach things differently. They’re not diagnostic people: they treat and manage pain. They don’t cure it. It has its place in medicine, of course, and they’ve helped me a great deal to function in everyday life, but I’ve never had a doctor put two and two together and actually made four. He didn’t take the diagnosis as a given, which meant that he examined every dusty corner of my health to find out what is really going on inside of my body. He came to the conclusion that I have an autoimmune disease (say whaaaaaat?). He doesn’t know which disorder, but it isn’t RSD for sure. He took note of all of these other things that are abnormal about me and realized they’re all related. Symptoms that I didn’t even know I had now matter a great deal, apparently (for example, my hands and feet look like wax, which is a symptom of certain autoimmune deficiencies). He’s going to run some blood work, and if he can’t do the tests and treatments he wants conducted here in Tallahassee, he will send me to the teaching hospital at Vanderbilt (where Dr. Martin has an award named after him, in case you wanted to know) because they are the nation’s leading research center on autoimmune disorders.
I’ve never been so amazed by a doctor in my life! Just the fact that he wants to move in a different direction is heartening to me. For once, I left a doctor’s office feeling encouraged and maybe even hopeful. Plus, I realized something very important today: some opportunities that don’t seem like opportunities can be the game-changer you were hoping for. The game has been changed J We’re moving in a new direction, and I don’t even think I would have gone to the appointment if it had been up to me. I would have missed out on this amazing opportunity. I would have continued to just manage the pain, without ever realizing that maybe the causes matter just as much as the symptoms. I don’t know where I will end up, and now I have no diagnosis, but it seems like we’re on the right road now.
So I’m asking you to not give up on the resources people provide to you. As smart as we think we are, we don’t know everything (surprise surprise!). In fact, we know almost nothing in proportion to the amount of information that’s out there. People and situations are often different than what they appear to be, and we can’t assume that anyone or anything will turn out as planned. We apply knowledge that we already have to situations and people, but if that knowledge is flawed, we will miss out on the majority of the picture. Throw out your preconceived notions and don’t give up on finding an answer for whatever problem you are facing, because tomorrow could be a game-changing day for you!