Caitlyn’s Polymyositis Blog

As the time to go back to work approached, I started doing more to try and get my strength back: Going up and down the stairs, lifting weights.  It seemed like the more I did, the weaker I got.  One day coming into the house after a doctors appointment, I collapsed on the front step.  My mom came and opened the door, and I told her I was saying my prayer as I was on my knees in the snow.  I was unable to get up so I crawled into the house, sat in the entryway, then crawled up the stairs to get to my feet.

At some point, my mom decided that we should go out to Zellers to walk around and out to meet my dad for supper.  This was a particularly rough day.  I was pushing a cart to keep me from falling over, but it was like my legs didn’t want to move.  My mother was getting frustrated with me because I couldn’t explain why I could hardly move.  I told her it was like my head was telling my legs to move, and my legs were ignoring it.  We gave up on this little outing after there were tears in the show department.  We went to meet my dad at East Side Mario’s.  We were seated as far as possible from the entrance so I shuffled my way back to our table.  I could hardly even hold my head up during the meal.  It was a disaster.  When we left, I was able to walk out of the restaurant somewhat like a normal person…however, I still needed help getting into the car. 

The most traumatic outing occurred around that time as well.  My parents decided that we were going to take a trip to Sussex to see the ski hill and go for lunch.  That morning, I could hardly get out of bed.  I did not want to go anywhere.  My mom came in and tried to get me excited to out for a Sunday drive.  I could hardly sit up in bed…and the thought of getting dressed to go out was overwhelming.  After a while, my dad came in and tried to get me excited to go out as well.  I finally got up, and got ready.  We drove out to Poley Mountain.  My dad had wanted to have lunch at the ski lodge…I didn’t want to see anyone I knew so we opted to go to another restaurant.  By this point, not only could I hardly hold my head up, but I could also hardly chew.  I’m sure the waitress thought that there was something wrong with me.  It took me about 40 minutes to eat a sandwich and some french fries.  Each fry took about a minute to chew.  When it came time to leave, I was mortified to discover that I wasn’t able to stand up out of the booth.  After a while, I found a way to get up, but I was extremely embarassed that I couldn’t even do something simple like stand up.

The initial point of the doctors appointment on January 20th, was to get paperwork done for my return to work.  However, after another panic attack and more tears on the drive in to the appointment, it was clear that work was not going to be happening that week.  It was clear to myself and my doctor that we were on the wrong track.  The weakness was increasing.  He had me show him how I could lift my arms.  I couldn’t even lift my arms up far enough to touch my hair.  As I lifted, he felt my shoulders and remarked that I had frozen shoulders and it seemed like I had bad shoulder injuries.  At this point, he tried something different.  He pressed on different points of my body: Behind my neck, shoulder blades, behind my knees, my hips, lower back.  At this time, he realized his diagnosis of depression was wrong.  He thought that perhaps it was Fibromyalgia or Rheumatoid Arthritis.  At this point, I was taken off Prozac and another referral was put in to see a Rheumatologist.