Soaring above image

Polymyositis: How to Soar Above the Disease

Before polymyositis (PM) I was like a caterpillar just consuming life. I prided myself on being busy and being the queen of multitasking. I would often say to friends and family that I can make a meal, help one child with homework, referee between two other children, wash clothes2 min


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My fellow Myo Warriors, I just wanted to share something with you all on how I learned to cope with my disease.

Before polymyositis (PM) I was like a caterpillar just consuming life. I prided myself on being busy and being the queen of multitasking. I would often say to friends and family that I can make a meal, help one child with homework, referee between two other children, wash clothes… well, you get the drift. Just like a caterpillar eating everything in sight. Then fall of 2011 I became ill and fought through it instead of figuring out what was wrong. I was starting to slow right down like a caterpillar getting ready to cocoon.

As Myositis warriors, we all have the capability to be beautiful butterflies soaring above the disease. As we soar we educate others, we lend an ear and we give gentle cyber hugs and we become advocates of our health.

From fall 2011 to spring 2013, I was in my cocoon with so many medical tests, so many different doctors, so many different explanations of what could be wrong with me and lastly I spend so much time in and out of hospitals I really got to learn first-hand how the Canadian health care system works.

When I got my diagnoses via muscle biopsy on April 1, 2013, I was shocked and mortified and confused not knowing what Polymyositis was. Luckily I found wonderful support groups on Facebook the summer of 2013 which helped me to understand my disease and know that I am not alone.

Myositis patients, donate plasma

I was still in my cocoon but I could feel a change happening within me. I  started drug treatment in April 2013 and had to change drugs twice. I started on 60mg of Prednisone and 8pills of 2.5mg of Methotrexate. Then by June 2013, I had to switch to Imuran because according to my rheumatologist I was allergic to Methotrexate. I also was tapering down from Prednisone. During the summer months, I was at 15mg of Prednisone and 150mg of Imuran and I wasn’t having a good time.

In the fall of 2013 is when I started to break open my cocoon. I decided to honor and cherish what life had given me and start anew. I learned to ask for help, I learned to rest more and the most important I learned to listen to my body!

In the Winter of 2013, I broke out of my cocoon like a beautiful butterfly knowing and appreciating the little things in life.  I enjoy moments with all four of my children and my husband. Yes, I have good days and bad days and when I have bad days I gently allow myself to feel the emotions and then say to myself “I am beautiful, I am loved and I serve a purpose in life.”

As Myositis warriors, we all have the capability to be beautiful butterflies soaring above the disease. As we soar we educate others, we lend an ear and we give gentle cyber hugs and we become advocates of our health.

May today bring all my Myo warriors peace.

Author: Nicole Dorrington

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Myositis Support

Myositis Support and Understanding Association (MSU) is a patient-led, patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community! MSU was founded by myositis patients for myositis patients and caregivers and offers education, various support options, advocacy, clinical trial matching, financial assistance, and access to research. Visit our comprehensive myositis website at Understandingmyositis.org.

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