The weekend was a total bust as I anticipated my Monday afternoon doctor’s appointment. I ordered food and watched episodes of The Daily Show on DVR. I love Jon Stewart! He became my Jewish boyfriend, whom I discussed politics, the silly things that the media focuses on, important world issues, jokes, and everything in between. The show gave me comfort, a way to escape from my oppressing reality. After an exhilarating weekend with Jon and every takeout imaginable, Monday came, I woke up and decided to be optimistic. I hoped that my mindset would ultimately affect the outcome of my appointment; at this point I needed something.
My mother knew about the appointment and called me five times that morning to ensure that I was on time. Each phone call started with her thick and sweet Nigerian accent saying the same sentence with each phone call, “Where ah you baby?” Going nowhere if you continue to call me, I was thinking, but I knew she was worried and trying to be there for me. So I reserved the inevitable blow up for her fourth call and finally had to blurt out that her incessant calls were no longer helping and that I would call her when it was over. Being my mother she called one more time and followed her “Where ah you baby?” with “I’m sorry honey for calling again, but I couldn’t help it.” I know my mom so I just laughed and accepted that she loved me that much. I quickly ended the call with telling her to calm down and promising that I would call her, ten minutes later I headed out the door.
The train was a blur and I almost ran to the doctor’s office, finally I was about to get some answers or so I thought. There was another patient, who was wrapping up his appointment and it was taking longer than anticipated. I was getting anxious in the waiting room, I even got up a few times to look down the hallway to see if the doctor’s exam room door had opened up yet. The receptionist could see my obvious anxiety and tried her best to continue to reassure me that the doctor would be out soon. She told me that I was his last patient of the day, so he would be able to give all of his time and attention to me, and my appointment. I nodded politely, but it took everything inside of me to not run into his exam and yell, “End this now, I am dying out there, we need to talk MAN!!!” As I was standing in the hallway for the fourth time, the door opened, I ran back to the waiting area to take my abandoned seat and attempted to look calm. They talked briefly in the waiting area, shook hands and finally the doctor called my name. He immediately apologized for keeping me waiting, I told him that it was no big deal, and followed him back to the exam room.
I was sure that his receptionist would share my crazy antics with him when I left, and I was ok with that reality. We sat down and I know that he could see the anticipation all over me. He said, “ok let’s not wait anymore”, and he handed me the results. I read over them expecting to see in big letters YOU HAVE THIS DISEASE, but what I saw was a list of diseases. He told me that he would not be able to fully diagnose me that it was out of his scope of practice. Where have I heard that before? The sheet of paper he gave me stated that I had one of these five mixed connective tissue diseases and that a rheumatologist would have to determine which one. What the hell is a rheumatologist, and why am I wasting my time here with you if I need to be with one of those doctors, I wanted to say, but just nodded. I didn’t understand why this was so hard to diagnose, almost four months had passed since I went to the dermatologist and no definitive answers. I wanted to breakdown and start crying. He must have seen how all of the energy that was left, just escaped my body as I slumped down in my chair.
He then asked if he could share a story with me about his brother, I raised an eyebrow and then obliged. He told me that he had a younger brother, who was healthy his whole life then all of a sudden one day 15 years ago woke up one morning and was covered in purplish-red rashes, similar to the ones on me one morning. He had a severe fever, chills and was very weak. The doctors took many blood tests and could not figure out what was going on, but they found that his body systems were shutting down and at that point they gave him six months to live. At this point in the story I looked at him with a, “WTF Face” and he quickly added, “my brother is still alive.” He quickly wrapped the rest of the story by telling me, after they had prepared for his brother’s funeral, and last few months of life, a few months later everything disappeared and his brother became completely healthy again. The doctors could not explain it, but as he put it “there are many things that my colleagues don’t know and, can never explain because we are human.” He continued with, “I say all of this to say, don’t lose hope and don’t think that this will not get better or at least manageable.” I appreciated his efforts to comfort me, but I still didn’t know what was wrong with me and I would not find comfort until I at least got a diagnosis. He gave me a few names to rheumatologists and made me promise that I would stay positive through the process. I don’t know how well I kept that promise.