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Jerry Williams published “Meme” 3 years, 12 months ago
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Jerry Williams wrote a new post 3 years, 12 months ago
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Jerry Williams commented on the post, Easy tutorial for CDC recommended mask 4 years ago
@efilmore Thank you for putting this video together. While I don’t sew, if I did, it looks like this would be an easier way. I imagine this will help many people. Keep up the great work. I am so proud of you!
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Jerry Williams commented on the post, Welcome to our world 4 years ago
@lizzysawrus Great article! I have welcomed many of my family members and friends into our world. Many of them told me they had no idea how difficult life is like this so yes, better understanding is one of the bright sides of this awful virus.
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Jerry Williams commented on the post, Finding my happy place with IBM 4 years ago
Thanks for sharing it! We look forward to you sharing more.
It’s great that your band is so helpful and understanding and that you have such a wonderful support system. Keep playing as long as you can my friend!
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Jerry Williams commented on the post, Finding my happy place with IBM 4 years ago
@jaymo It’s so wonderful to know you can still play the guitar. How do you cope now playing in a wheelchair?
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Jerry Williams commented on the post, Facing rare disease alone 4 years, 5 months ago
@lizzysawrus I can’t imagine the shock you faced hearing this from J! I was shocked to read it; I actually gasped out loud. Thanks for the positivity despite that it is a terrible situation for you and for providing tips to help others may be going through the same thing. I just happened to get lucky in meeting my husband the year I got sick and…[Read more]
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Jerry Williams commented on the post, Kept Promises – "Love Never Fails" 4 years, 5 months ago
It really does, Anne!
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Jerry Williams commented on the post, Kept Promises – "Love Never Fails" 4 years, 5 months ago
@cajungirl4life Once you again, you nailed it. It’s wonderful you have such a loving and caring husband who stands beside you. That is so important. Thanks for your honesty in sharing your experiences.
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Jerry Williams posted a new activity comment 4 years, 6 months ago
@cajungirl4life Yes, I do understand completely. I truly hope Rituxan is the answer for you! Btw, your articles are amazing! I am waiting to publish your next soon and I hope you will continue writing with us. Your words in the one currently published, I felt so weird reading my own experiences, insecurity, not being the person they agreed to…[Read more]
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Jerry Williams commented on the post, Going out of my head 4 years, 6 months ago
@seatlsonic Thanks for sharing how difficult it is when it takes away from time spent with family.
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Jerry Williams commented on the post, Global Genes Patient Advocacy Summit Highlights Video 2109 4 years, 6 months ago
@lynnwilson Love your rare disease advocate dance with Seth!
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Jerry Williams posted a new activity comment 4 years, 6 months ago
@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.
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Jerry Williams posted a new activity comment 4 years, 6 months ago
Hi @painsucks Welcome to #MyositisLIFE! Good luck with your testing. We will be thinking of you.
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Jerry Williams posted a new activity comment 4 years, 6 months ago
Hi Kelly and welcome to #MyositisLIFE! So glad to see you here. We are working to continue building this site and we thank you for being a part of this growing effort to educate using our experiences.
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Jerry Williams posted a new activity comment 4 years, 6 months ago
Hi Sara 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…[Read more]
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Jerry Williams posted a new activity comment 4 years, 6 months ago
Hi Taslim 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…[Read more]
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Jerry Williams posted a new activity comment 4 years, 6 months ago
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…[Read more]
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Lory G Cully replied 4 years, 6 months ago
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.…[Read more] -
Jerry Williams replied 4 years, 6 months ago
@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.
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Lory G Cully replied 4 years, 6 months ago
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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Jerry Williams commented on the post, “You're pregnant, get used to it” 4 years, 6 months ago
@shicki1202 So thankful you shared your experience as we have so many young people who want to start a family and are looking for this type of experience. I look forward to you sharing more soon!
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Jerry Williams commented on the post, You must be doing fine!!! 4 years, 6 months ago
@annecarlo There are times I find myself intentionally not doing something because of what others might think – that because I can walk with my cane one day, I am fine and all better. I am working on trying to not do that anymore and just live my life. Good for you though for getting out and doing something you love and miss. Keep at it!
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