There are so many things I can do now that I could not do 8 months ago. The dermatomyositis that landed me in the hospital had done a lot of damage - at that time it was major rashes all over my body and extreme muscle weakness. We didn't know then what was causing me all this trouble.
I am a lucky one. UPMC Pittsburgh is on the leading edge of this rare disease. Doctors at the Faulk Clinic in Pittsburgh just got FDA approval for the treatment of dermatomyositis with IVIG infusions. The first treatment approved since identifying the disease in the '70s. Why so long? It was difficult to have enough people to do a good study. I started IVIG the end of September.
With just 4 infusions, there are many things I can do now that I could not 6 or 8 months ago or at points along the way. On difficult days, focusing on what I CAN now do has been really important.
Here's a list:
Swallow without food getting stuck
Lift a half gallon of milk
Dress myself
Get out of bed without assistance
Cook meals
Do light cleaning
Drive
Shower without assistance
Do a few stairs
Walk short distances without a walker
Concentrate on mind tasks for longer periods of time
Hold a book to read (I have enjoyed audible!)
Spend a little time outside without skin turning red
Play with the dogs
Groom the dogs
Open child proof things and safety food lids
Laugh out loud - (because I quit smoking)
I'm sure there are other things too but these are the ones that come to mind today. I am so thankful for the encouragement and understanding of a whole community of people who have helped me during this year. They brought food, came to help daily or stay for a while, did cleaning, called to check, held down the fort (music store), brought books and music, pointed me toward positive audible books and podcasts, kept me laughing.... This is my year of celebration and I look forward to sharing these days with YOU!
