The surgery day stress had brought up a lot of issues and feelings I hadn't thought about. Worrying about the future wasn't something that I wanted to do. I just wanted to be a normal teenage with no worries. So that was what I made my week of recovery about, being a normal teenager. I got to sleep in late, I had a huge fight with my stepmother, I hung out with friends that I didn't normally see because they went to a different school and I just tried to relax.
I realized as soon as the muscle biopsy results came in my life would change. At that point, I would either have a diagnosis or the probing and testing would continue. I knew if I had a diagnosis, then I would forever be 'labeled' and I didn't like the thoughts of that. But I definitely was not enjoying all the tests the doctors were ordering either. Really, I hoped I would wake up and have the last several months just be a dream. Of course that didn't happen.
I only got three days of relaxing before Dr. Brackett called. My results from the muscle biopsy were in from Dr. Odum. It was time for another doctor's appointment.
On Friday, January 30, 1998 my parents and I were in Dr. Brackett's waiting room. Dr. Brackett was a rheumatologist practicing with Arthritis Associates. We were by far the most youthful group in the entire waiting room. Most everyone had a head full of grey hair and some sort of assistance device to aid in their walking. I remember feeling so out of place. I was a 16 year old girl. What was I doing in this waiting room?
Once I was called back, my parents and I waited for Dr. Brackett in a small exam room. My parents had been divorced for a little over four years. I was glad they were able to come together for me. I know it had to be awkward for them to sit in that tiny room with me but I was so glad they were both there. As a way to lighten the mood, my dad was checking out everything in the room. He opened all the drawers, touched everything on the counter, and played with the instruments hanging on the wall. I told him I didn't think we were allowed to mess with all that stuff (even though he was doing a great job distracting me). My dad said that we were helping pay for it with our visit so he thought it was okay for us to touch everything. I had to laugh at his reasoning.
When Dr. Brackett came in the room, the mood changed. We all held our breath and waited for the results. He reviewed with us that my EMG was consistent with myopathy of the upper and lower extremities, my most recent CPK levels were 12,000, and my muscle biopsy was consistent with inflammatory myopathy. Dr. Brackett and Dr. Odum's impression was that I had Polymyositis. I had no clue what that was but it didn't sound good. Tears streamed down my face. I didn't know what all this would mean for my life and my future.
Dr. Brackett suggested we start with treatment immediately. I was to take 50 mg of prednisone everyday. I need to be on birth control and 1,200 mg of Caltrate-D. I would return in one month. Suddenly, everything was going so fast. We had answers but didn't really know what they all meant.
By the time I left his office, my head was swimming. Polymyositis and prednisone. I knew nothing about those things but they were about to take over my life. We were given pamphlets about each to read up on. I just wanted to run and hide. This couldn't possibly be happening to me.
(Below is a little extra info on prednisone and polymyositis….these terms were foreign to me at the time.)
Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)
Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases. Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's. It's more common in blacks than in whites, and women are affected more often than men are. Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)