Hi Lory and welcome to #MyositisLIFE. Thank you for joining this new and growing site. My name is Jerry Williams and I was diagnosed with polymyositis 18 years ago after an almost 4-year battle for a diagnosis, which has since been corrected to dermatomyositis by some of my doctors. I am the Founder and President of Myositis Support and Understanding Association (MSU), the patient-led nonprofit of which this program was built. We are working to expand and build this site more and thank you for being involved. My Best, Jerry
Hi jerry,
Thank you for your reply. It also was a long battle for me. it has taken 5 years and a lot of misdiagnosis. One dermatologist finally did some blood test and refer me to rheumatology. it was nurse who recommended a
doctor who deals in rare disease. she has a rare disease herself. its has been really hard. I am really sensitive to
meds. so haven’t found anything I can tolerate.
i can deal with the rashes. i have had light sensitivity for ten years. which has gotten worse. lost a lot of people
because of it. who want to be in the dark with someone all the time. I have one real friend left. she doesn’t mind
making a room dark for bit . So I can visit her. what hurt the most was losing someone I thought I knew for thirty years. it was to depressing for her. LIKE WHAT! Try living this way. Now it the vampire life.
@nicetee So great that you have a friend that is willing to deal with the darkness. Losing friendships is something I know all too well. Over the 18 years I have been living with myositis, I have learned who my true friends are and my Mom always told me growing up that one day I would. Please know you have me, us. We understand.
thank you for the welcome. I heard that saying too. how true. it is nice to feel understood. Flare up days.
they can be so painful. sometimes just have to do nothing and rest. Thanks again.
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Hi Lory and welcome to #MyositisLIFE. Thank you for joining this new and growing site. My name is Jerry Williams and I was diagnosed with polymyositis 18 years ago after an almost 4-year battle for a diagnosis, which has since been corrected to dermatomyositis by some of my doctors. I am the Founder and President of Myositis Support and Understanding Association (MSU), the patient-led nonprofit of which this program was built. We are working to expand and build this site more and thank you for being involved. My Best, Jerry
Hi jerry,
Thank you for your reply. It also was a long battle for me. it has taken 5 years and a lot of misdiagnosis. One dermatologist finally did some blood test and refer me to rheumatology. it was nurse who recommended a
doctor who deals in rare disease. she has a rare disease herself. its has been really hard. I am really sensitive to
meds. so haven’t found anything I can tolerate.
i can deal with the rashes. i have had light sensitivity for ten years. which has gotten worse. lost a lot of people
because of it. who want to be in the dark with someone all the time. I have one real friend left. she doesn’t mind
making a room dark for bit . So I can visit her. what hurt the most was losing someone I thought I knew for thirty years. it was to depressing for her. LIKE WHAT! Try living this way. Now it the vampire life.
@nicetee So great that you have a friend that is willing to deal with the darkness. Losing friendships is something I know all too well. Over the 18 years I have been living with myositis, I have learned who my true friends are and my Mom always told me growing up that one day I would. Please know you have me, us. We understand.
thank you for the welcome. I heard that saying too. how true. it is nice to feel understood. Flare up days.
they can be so painful. sometimes just have to do nothing and rest. Thanks again.