I clearly remember my first appointment with the rheumatologist. We went up to the second floor to register, and then went to the clinic. When we got there, we were given the usual forms to fill out. I was weighed and my height and blood pressure were taken. Then, a nurse came in and asked a bunch of questions. She just happened to be an old family friend, from when I was little. After that, we waited for a little while. Then, the doctor came in. She seemed nice enough. She looked at my shoulder and was impressed by the hypersensitivity of my skin. She asked me a couple of questions and mentioned "reflex dystrophy." I was surprised, because a friend of mine had been diagnosed with something called "reflex sympathetic dystrophy syndrome" by this doctor. I innocently asked if they were the same things. She didn't answer me. She gave me a prescription for Naprosyn, an NSAID (non-steroidal anti-inflammatory drug), sent me for occupational therapy, and decided that I should see a psychologist.
My mom decided that this time I should go to therapy at Hell, especially since this was OT and not PT. The OT seemed nice, and I liked her. I chattered away while I did exercises. They hurt a lot, and I said so. Somehow, I thought that she didn't care that it hurt me.
At my next appointment with the b---- rheumy at Hell, she made me stop playing the violin. I was heartbroken! She kept asking questions about my parents forcing me to play and stuff like that. The Naprosyn wasn't helping, so she switched me to Clinoril. She also prescribed a TENS unit. At the end of the appointment, she took my mom into a different room. My mom wouldn't tell me exactly what they talked about.
I kept going to OT twice a week. In OT, I spent ten minutes playing the violin, with the OT watching my shoulder movement. I loved those ten minutes, and I began looking forward to my trips to Hell, just for the little while that I was allowed to play the violin!
I used my TENS unit all the time. It really didn't help much, but it was the only thing offered to me.
I started seeing a psychologist in the professional building there. She was little, blond, and very quiet. She was supposed to teach me biofeedback, and we did a few sessions. It was weird...she put electrodes on my shoulder, and I had to try to change the little line on the computer by relaxing my muscles.
After a few sessions, she stopped taking me for biofeedback. Instead, we sat in her office and she asked me bunches of questions. I was confused...I thought she was supposed to teach me biofeedback, not psychoanalyze me!
I didn't have an appointment in the rheumatology clinic for a while. For some reason, my mom and I stopped by there after I had OT one day. My medication wasn't helping, and she increased my dosage. Then, she decided to consult with a shoulder specialist at the medical college, and she sent me for "nerve conduction studies," which I now know as EMG/NCV.
It was March, 1996, and the Jewish holiday, Purim, was coming up. My mom suddenly got sick, and we didn't know what was wrong with her. We made an appointment for the EMG anyway.
I had occupational therapy first. That day, the OT made me lay on my stomach and do a puzzle with my arms above my head. It was NOT fun! It hurt my arm a lot, and it took forever because I'm bad at puzzles.
The EMG was...an experience I'll never forget. My mom compared it to Nazi torture, which is not something my family uses lightly! I cried throughout the test. Afterward, my mom took me to the mall for lunch. I was miserable for days, from the pain caused by the test.
My mom's liver function tests were all screwed up, and my grandfather thought that she might have hepatitis. She didn't get to come to hear me sing in the choir for Purim. The theme that year was Disney, and we all wore Mickey Mouse ears. It was fun.
The next morning, I woke up with a sore throat and a low-grade fever. My mom called my grandma, and she took me to my grandpa's office. My grandpa put me on antibiotics: a medication called Ceftin. That afternoon, I seemed to be feeling better. My mom and I played with the dog...well, actually we drove the poor dog insane and laughed at her!
The next day, I was much sicker. I continued to get sicker, and I ended up with a high fever, headache, swollen glands, and a bright red rash over my entire body. My mom was still sick, but the hepatitis tests came back negative, three times. She asked my grandpa if it could be her gall bladder, and he said that it could. She was right, and she needed surgery to have her gall bladder removed.
I was still REALLY sick. My grandpa thought that it might be mono even, and he sent me for blood tests. They came back negative. I got sicker, and I even threw up a couple of times. After seeing my rash, he thought that it could be an allergic reaction to my medication. I stopped the Clinoril. After a few days, I started to feel a little better, although I was still pretty sick.
My mom went into the hospital for her gall bladder surgery, and I stayed home and watched stupid videos that my grandma rented for me. The day before my mom came home, I was feeling a lot better. The next day was the orchestra's trip to Madison, and I desperately wanted to go, even though I couldn't play in the concert! My dad told me that I could go if I didn't have a fever. Our thermometer broke, so my dad used my grandma's old mercury one. It was stuck at 99.8! My dad ran it under cold water and it STILL read 99.8! That was in my favor, and he let me go on the trip. I missed two full weeks of school while I was sick.
Two weeks later, after I was pretty much recovered, my grandpa said I could try the Clinoril again. I ended up coming home from school, with a fever and a rash. There was no doubt: I was allergic to Clinoril. My mom called the rheumatology clinic and talked to the other doctor there. He prescribed another NSAID, called Voltaren, which was in the least related class of NSAIDs from Clinoril.
My mom made an appointment with the shoulder specialist at the medical college. He looked at my arm, sent me for x-rays, and said that I had "loose joints," and that I probably just pulled my shoulder partially out of socket a few times. He gave me a new OT script, saying that I should avoid lifting my arms above my head.
Then, he threatened me. He told me that if I complained about being in pain, I wouldn't be allowed to play the violin. It wasn't, "if you're in pain, you shouldn't be playing." It was, "shut up or we'll take away the thing you love the most." I had two more sessions in OT. During the second-to-last session, the OT said something that made me cry. I don't even remember what it was, but I know that it was mean.
I got to start playing the violin again, which I was very happy about. I continued to see the psychologist for a few more times. After my last appointment, she told my mom that there was nothing psychologically wrong with me, and that I was a "pretty neat kid."
I had an allergic reaction to Voltaren on May 9, 1996, the day before my baby cousin's bris, his sister's birthday, and our new rabbi's welcoming service, which I chanted the Torah portion at. I had a fever, a rash, and this time my joints stiffened up. It wasn't fun, but the bris was nice, and so was the welcoming service.
When my mom called the rheumatology clinic, they said that I should take Tylenol for pain! I was upset...the Voltaren was helping my pain a little (it's an extremely strong NSAID), and without it, I was miserable. Tylenol did nothing, of course. I took it regularly, like the doctor said to, which I now know is pretty dangerous.
The doctors' appointments and therapy stopped over the summer, and little mention was made of my pain for months. If I brought up the subject, my mom automatically stopped me. I didn't know what to do. I was undiagnosed, not believed, and in a lot of pain.
