Life with JDM
A patient-submitted story by Cathelina V.
JDM (Juvenile Dermatomyositis) has been a part of my life since I was 14 years old, now 30yrs old and still battling and being baffled by this illness. I realize it is so much more than a burden I carry. So much of JDM dictates my life, my decisions, and choice of actions. What comes easily to most; cooking, cleaning, getting dressed… can be a daunting task for me when I do not feel well. Finding the energy and motivation to get up from lying or sitting down when my body is pulsating from pain can be rather difficult. Finding the balance between listening and knowing my body and its limitations at times is a struggle.
My mind is healthy and thinks it can do it all with no breaks. But, my body quickly reminds me as it can stop me dead in my tracks! Life with JDM is a guessing game. Every day can bring something new or old symptoms and pains that have been forgotten. JDM may control how much pain and or fatigue I will have, what will hurt, how fast I will tire, how many breaks will be needed, and overall general physical health. But it does not control my mental state, what I have and will accomplish, or my smile.
(MSU encourages you to share your story of living with or caring for someone with Myositis at www.UnderstandingMyositis.org/sharerare)
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