Hello Darkness

Working underground collecting video for years, I learned what dark really is. Some trips were a long way from the surface and if artificial lights weren't on, it felt intimidating. The local mine training including “learning the ropes” which were on the side so we would know which direction was toward the surface and which was back deeper in the mine. While underground, I always knew someone was leading the way and someone was watching my back. Each experience ended with a feeling of joy and gratitude when we reached the surface.

Years ago I took my dogs Scooter and Molly to one of our local trails and old railroad tunnel with a curve. At the curve, we could not see the light of the entrance or where we were headed. I had no flashlight. This was before cell phones were so smart. I was sure we did not need to go far before we would see light ahead of us. I had been there before but they had not. Scooter froze and would not budge. Molly leaned into me assuring me she would go wherever I went.

I looked ahead and looked back. Light was closer behind but I really wanted to go forward as our walk had just begun. Scooter wasn't sure about either direction no matter how I tried encouraging him. He was less trusting about what may lie ahead. Molly believed in me and would have continued. They waited for my decision. We had no one ahead of us leading the way and no one behind us watching our back. I was their guide as we stood side by side.

We turned back. This adventure could be done another day when I could shine a light to lead the way.We all make choices in our lives. In darkness we are forced to make a choice. We cannot stay there long without some anxiety. Be the light or watch for the light in the direction you choose. It's not so far away. Darkness is not an enemy. It is a friend forcing us to choose. We learn much in the process. Fear not.

 

Things I celebrate now!

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!