Donna G. shares an open letter to Dermatomyositis for Myositis Awareness Month and MSU’s #MyositisLIFE project.

An Open Letter: Dear Dermatomyositis

In January 2015 I was diagnosed with Dermatomyositis at the age of 36. Of course, I never heard of it. My initial reaction was mixed with confusion, sadness and anger. However, the one thing I knew was I was not going to let the illness completely take away my quality of life. My family and friends were not going to allow it either. I decided to write a letter to Dermatomyositis:1 min


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In January 2015 I was diagnosed with Dermatomyositis at the age of 36. Of course, I never heard of it. My initial reaction was mixed with confusion, sadness and anger. However, the one thing I knew was I was not going to let the illness completely take away my quality of life. My family and friends were not going to allow it either. I decided to write a letter to Dermatomyositis.

Dear Dermatomyositis,

I am writing you because I found out in January 2015 you were the culprit behind my rash and muscle weakness. Apparently, you will not be going anywhere anytime soon. So I think we need to set a few things straight. I was told there may be days that I will battle getting out of bed. My regular daily battles usually include trying to get my 8-year-old to do his homework, my teenage daughter with her busy schedule, and maybe my husband with paint colors. I like to keep it that way. I understand you are going to give me bad days, here’s the deal, I like to have the last word. I also have determined family and friends.

MSU, IndeeLift program, greater independence for myositis patients

When you decide I am not making it up the stairs, my husband carries me up. My husband has been through deployments, he does not find you intimidating one bit. On the days you take a smile away from me, I have two amazing kids that replace it instantly. When you decide that you will not allow me to pick up the slack in the household, my mother moved in to help me. Did I mention she likes to drive? You are not keeping me in on the days I need to get somewhere and it is difficult for me to drive. There have been a few nights you wanted to keep me up but I did not get frustrated. My cousin works third shift, we text through it.

I have numerous friends and family that have adapted to the unpredicted schedule you have given me. What I am trying to say to you is you have a wall of people to get through to bring me down. Since they are not fond of you, my advice is to keep the flare-ups to a minimum. This flare that has been lasting a year is pushing it. Please do not get too comfortable, I have a life to enjoy with incredible people.

Sincerely,

Donna


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Myositis Support

This is the official #MyositisLIFE account of Myositis Support and Understanding Association (MSU),  a patient-led, patient-centered, all-volunteer 501(c)(3) nonprofit organization founded by myositis patients for myositis patients and caregivers.

MSU is Empowering the Myositis Community through education, support, advocacy, clinical trial matching, financial assistance, and access to research. We are working to improve the day to day lives of myositis patients and their caregivers. Learn more about MSU and myositis by visiting our comprehensive myositis website at Understandingmyositis.org.

As a nonprofit organization, MSU relies on donations in order to provide crucial programs and services to the community. If you are able, make a donation of any amount today.

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