Wednesday, March 25, 2009

March CPK

CK is down to 660 now!
Shingles doesn't seem to have triggered anything!

Thursday, March 19, 2009


I am following the 10-20% trend of patients who, after HiCy, have an awakened form of Chicken Pox- Shingles. I was glad to have the Post-HiCy Care info on hand and am now on Valtrex as an anti-viral. I cannot give another person Shingles but there is a small possibility that I could give Chicken Pox to someone that has not had Chicken Pox or was not vaccinated against it. It is unlikely that I would spread this to others with it being on my side and covered by clothing. I first noticed a tender feeling on my side and then in a few days there was a bumpy red rash that followed the nerve line on the left side of my body.

This was not suprising, not too uncomfortable, and easy to treat.

Ignoring the peripheral fear of flares is not so easy.

Tuesday, March 17, 2009


I had my MRI of the legs at the beginning of March and we were pleased with the decrease in inflammation in comparison to a year ago. It was better but surely not perfect and present in the areas I know are the weakest- hamstrings and gluts. Not sure what is permanent damage, but the goal is to build up the muscle around the damage. I have decided to do physical therapy on my own.

We decided to start tapering a bit to 12.5 Prednisone and I am doing 10mg/15mg back and forth each day for a month. Not sure what will happen once I am at 10mg.

I received a photo/video release in the mail the other day for the film that I will be in for Hopkins. That should be interesting watching me try to communicate clearly while nauseous. Speaking of movies, a friend just showed me a small independent film shot about the friendship between a woman with Polymyositis and a boy with Autism. It is called "SideCar." ( It sheds light on the possibilities that form with friendship, the severity of Myositis, and the uniqueness of the autistic mind. We all have something we carry around with us that shapes our world but does not define us. A nice reminder to get past what's on the surface.