My new life,with Polymyositis
by guest author, Sandra
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 a 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. Everyday 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.
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
Tags: myositis awareness myositis story myositis support
This is a reply to Sandra Padilla. I was diagnosed with severe polymyositis in 1970. I went through a lot of painful tests and I was in severe pain and could barely walk or move my arms, especially to raise them even to shoulder level. I was in the hospital for a month and treated with hydrotherapy, prednisone and lots of bedrest.
I spent the first couple of weeks feeling extremely sorry for myself and asking that age-old question ” what did I do to deserve this”. The answer is “nothing”. When I decided to start thinking positive and telling myself everything would be fine, things started turning around.
I am now 76 years old and have been able to do most of the things I have wanted to do all these years. My energy level has always been fairly low, my muscles get sore if I over do things and I have had chest pain, etc over the years.
The hardest part has been that it is a fairly rare and not well understood condition. Most of my doctors have down played the seriousness of it and one or two have told me “you don’t have polymyositis”. Well, excuse me, but I live in my body, and I know how I feel.
My best advice is, get plenty of rest, exercise, eat healthy, stay hydrated, avoid alcohol, only take the medications you absolutely need to stay healthy, and most of all – believe in yourself and stay positive. There is a saying that “whether you think you can, or you think you can’t, either is true”. I choose to think I can!