Polymyositis: How to Soar Above the Disease

Author: Nicole Dorrington

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

Before 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. From fall 2011 to spring 2013 I was in my cocoon- 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 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. I was still in my cocoon but I could feel a change happening within me. I  Started drug treatment April 2013 and had to change drugs twice. I started on 60mg of Prednisone and 8pills of 2.5mg of Methotraxate. Then by June 2013 I had to switch to Imuran because according to my rheumatologist I was allergic to Methotraxate. 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 honour 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!

Winter 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 Myo 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:

Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

View more information: Myositis Support

2 Comments
  1. KateRossiStuart 4 years ago

    You did a beautiful job with this, Nicole.

  2. Jerry Williams 4 years ago

    This is so beautifully written Nicole! You make such great metaphors. We do educate others and those cyber hugs are all so important since we are all spread so apart due to the rareness of our myositis. And your quote, “I am beautiful, I am loved and I serve a purpose in life” is something each of use should reaffirm in ourselves everyday! Thank you for sharing this with us!

Leave a reply

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

You agree to our Terms and Conditions and Privacy Policy by using and viewing our site.

Want to make a tax-deductible donation? Visit our Donate page today!

PIONEER, Idera clinical trial for dermatomyositis

PIONEER, Idera clinical trial for dermatomyositis

or

Log in with your credentials

or    

Forgot your details?

or

Become a Member