Monday, March 10, 2014

My Story Polymyositis Part Two

     The summer of 1998 did not go the way I envisioned it.  Instead of beach trips and good times, I had doctor's appointments and medicine trays.  The variety of medicine I was on was making me worse.  Much worse.  And it came with its fair share of unpleasant side effects, which were treated with, that's right, MORE medicine.  I felt like I was 97 instead of 17 when I sat down each week to fill my medicine tray.  I was on so many different pills that I needed not just a medicine tray but one that you could pop each day of the week out to take with you.  You know the one that has four different compartments for morning, lunch, dinner, and bedtime?  Yeah, I needed that for all my medicine.

     The prednisone was take a toll on my body.  I was having a much harder time getting off the floor and out of chairs.  I could no longer preform these tasks with my legs alone, I had to push off with my hands.  In the few short months that I had been on prednisone, I had already gained 30 pounds (and it wouldn't stop there).  Dr. Brackett referred to it as cushingoid and I refereed to it as looking like a chipmunk.  I always had a very clear complexion but the prednisone took that away from me as well.  I had horrible acne, especially on my forehead.  I also had developed thrush in my mouth and throat.  Thrush occurs when a fungus called Candida overgrows in your mouth.  These side effects of prednisone caused me to have to take two additional medicines.  (Yay!!  NOT!!)

     Unfortunately, that wasn't the end of it.  Emotionally, I was on a roller coaster with no way off.  There weren't many highs on the ride but there were a ton of lows.  There were so many physical changes I was going through and they seemed to be all at once.  My physical strength was rapidly declining thanks to steroid induced myopathy.  My physical appearance had drastically changed.  I went from a cute little stick chick to an over weight acne covered sobbing mess.  There were many days that I looked in the mirror and could not even recognize the sad girl looking back at me.  My brown eyes were the only thing that remotely looked familiar to me and even they were different, they were so sad.  It was bad....really bad.  I was deeply depressed.  And guess what?!  There was another pill for that!    

      The combination of prednisone and methotrexate were not yielding the results my doctors had hoped.  So we added another medicine to the mix.  Mid summer I began taking 50 mg of Imuran. Imuran has several different uses such as: to prevent the rejection of a kidney transplant, to treat certain types of bowel conditions (Crohn's disease, ulcerative) and to treat sever rheumatoid arthritis.

      In July, I had a repeat muscle biopsy and MRI at Vanderbilt. The lack of improvement was baffling to my doctors and the question of whether or not I had an accurate diagnosis came up many times.  Dr. Brackett reached out to many other doctors across the eastern sea board for feed back on the proper treatment for me and if I had an accurate diagnosis.  The response to whether or not I had a proper diagnosis was always about the same.  It seemed all the doctors that looked at my muscle biopsy slides were always about 99% sure that I had polymyositis.  No one was ever 100% sure.

     So I continued on following the doctor's orders like a good little patient all the while the most fun part of my adolescences was passing me by and my senior year of high school was quickly approaching.

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