I'm Jerry Williams, Founder and President of Myositis Support and Understanding Association (MSU) and I don't do crafts. I am thankful that Emily Filmore, a Co-Founding Director of MSU, does! She not only made my mask, and one for my husband, she stitched "MSU" on the front, and shipped them to me here in Delaware. Thanks Em!
Like others I know living with myositis, my pre-COVID-19 days were very similar to the current situation with stay home, social distancing, and wearing masks in public recommendations. I have had myositis for 17 years. After a 3-year battle for a diagnosis, I was told I had polymyositis. My diagnosis has since changed to dermatomyositis, rather than polymyositis with skin lupus.
I stay home for two reasons:
I am on immune-suppressing medications. As treatment for dermatomyositis, I am on Prednisone and Imuran, among others. Both of these medications suppress the immune system, which places me at a higher risk of infection. And because of this, for many years I have had to implement sometimes extreme germ-avoidance methods.
I am too weak to leave. Social isolation is my normal. This is nothing new for me. The muscle weakness, pain, and extreme fatigue make it very difficult for me to get out of the house. Getting down the stairs is often a roadblock for me being able to leave. Yes, I need a ramp but who can afford it? I know how this isolation feels and I am sorry my family members and friends now endure the same. But remember, this is temporary. It's a must to save lives and that's what matters.
Finally, I am thankful that with palliative care my quality of life has improved some over the past few months, and with telemedicine, access to my doctors has never been better.
I want to express my gratitude to all essential workers who continue to show up to ensure we have what we need to get through this. Thank you for saving lives.
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