Hello, my name is Sandra. I have a rare autoimmune disease called Polymyositis. It causes inflammation of the muscle tissues.
I was 46 years old when I was diagnosed in 2013. The attending physician said to me, “You will either be paralyzed or dead by the end of this year.” I sat in my hospital room, crying, unable to comprehend any of this. Why? What did I do to deserve this? I decided there is NO way I’m going to let my kids see me paralyzed; I couldn’t handle a slow and painful death. So I decided to give up then and there. NO medication, food, etc.
A few days later, January 9, 2013, to be exact, I got a phone call from someone I had only met once before through a mutual friend. His name is Jim Morrison and he talked to me and gave me hope and my faith back. He said, “Never give up on life. It’s yours, fight for it. You have been put here for a reason and don’t question it, just ask for guidance.” His wife Janice also helped me, especially the first few months. She helped me understand and comprehend that my life wasn’t over; it was just a new beginning.
Three years later I’m still struggling but I don’t question it anymore. Now I want everyone to know what it is like to live with something that many have never heard of (Including myself). I would like to spread awareness of Myositis including Polymyositis (PM), Dermatomyositis (DM), Inclusion Body Myositis (IBM), and Juvenile Dermatomyositis (JDM). These affect patients differently, but there are a few things that are the same including muscle weakness, pain, and of course the fact that our lives will never be what they once were.
I went to the Myositis conference a few weeks ago. I got to meet some of my online support group friends. It was wonderful meeting them all and having a chance to talk to someone face to face and realize that you’re not alone. I learned a lot from this group and I learned more at the conference. Every day I learn something new and interesting.
There are 50,000 to 75,000 people affected by some form of Myositis in the United States. It is estimated that 5-10 people per million are diagnosed annually. We are here to raise awareness. Someday doctors will figure out how we get Myositis, how to prevent it, and of course, they will find a cure.
She helped me understand and comprehend that my life wasn’t over; it was just a new beginning.
People look at me and say, “Oh there is nothing wrong with you. You are exaggerating or you want attention.” Well, we may look great on the outside but remember it affects our insides, muscle tissues, kidneys, liver, and lungs. All I have to say for those who have any disease/illness and read this is to always think positive thoughts, stay away from negative thoughts, and from people that will only bring you down. For those who are reading this and don’t believe ask questions and educate yourself and always remember that we are all affected by this differently. Talk to that person, their spouse, his/her doctors, caretaker, etc. Family and friends are who get us through another day.
As for me, I’m struggling but alive. I am taking it one day at a time and realizing that “Day-by-Day is The Myositis Way!”
*Day-by-Day is the Myositis Way” is the slogan for MSU