@jerrywilliams
Member since January 13, 2019
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Jerry Williams posted an update 4 years, 7 months ago
@cajungirl4life Hi Kelley 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…[Read more]
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Jerry Williams commented on the post, Balancing rest and recovery with myositis 4 years, 7 months ago
@lizzysawrus – What a great, and relatable, article about your experiences. Finding that balance is tough. Knowing when to push and when to rest. When to worry and when to relax. Having such a great boyfriend that keeps you involved in “regular” activities is awesome. Communication is so important in any relationship, but with chronic illnesses…[Read more]
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Jerry Williams posted a new activity comment 4 years, 7 months ago
@annecarlo Thank you so much!
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Jerry Williams posted a new activity comment 4 years, 7 months ago
We are working to improve this site as we continue to welcome new members. We love feedback, so feel free to send me a private message with anything you have in mind. #MyositisLIFE is for all of us to publicly share our experiences to ensure we promote awareness, education, patient and caregiver perspectives, and help advance research. We are here…[Read more]
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ac replied 4 years, 7 months ago
hi Jerry! just poking around and getting familiar with it all myself; i think its great though so far and if any ideas pop in my head, i will share them with you. but it looks like you guys are thinking of everything 🙂 good job.
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Jerry Williams replied 4 years, 7 months ago
@annecarlo Thank you so much!
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Jerry Williams posted a new activity comment 4 years, 7 months ago
Hi @annecarlo and thanks for joining us on #MyositisLIFE!
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Jerry Williams posted an update 4 years, 7 months ago
@myositis It was great you were at the TMA conference again this year! We are moving, pushing, working to continue to Empower the Myositis Community! Looking forward to more shared experiences.
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Jerry Williams wrote a new post 5 years, 1 month ago
[vc_row][vc_column][vc_custom_heading text=”Get your #MyositisLIFE T-Shirt” use_theme_fonts=”yes”][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”4232″ img_size=”” […]
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Jerry Williams wrote a new post 5 years, 1 month ago
This campaign is now closed. Thank you for your support!
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Jerry Williams wrote a new post 5 years, 1 month ago
Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course and that is often easier said than done, especially for those who suffer from Myositis.
Life s […]
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Jerry Williams wrote a new post 5 years, 1 month ago
Anyone dealing with a chronic health condition (whether as a patient or loved one/care partner) can tell you, illness makes you think about things that you would prefer not to. For some, one of those things is […]
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Jerry Williams wrote a new post 5 years, 1 month ago
I am about to share a bit about myself that may be scary or shocking. I am certainly exposing some darker sides of my past that some would consider too private or forbidden to share, but I do it to show you that […]
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Jerry Williams wrote a new post 5 years, 1 month ago
My name is Marsha Bell. In 2005, and unbeknownst to me, my life as I once knew it was about to change forever.
I’ve been diagnosed with the following rare, incurable muscle degenerative condition n […]
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Jerry Williams wrote a new post 5 years, 1 month ago
I am the care giver you see me everywhere,But what you don’t see is just how I got there.
I didn’t set out to be a fixer of all things broken,Just someone who cares without words being spoken.
I try to be a s […]
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Jerry Williams wrote a new post 5 years, 1 month ago
I have been trying to figure out a way to explain what it is like for a child of a parent with Myositis. It hasn’t exactly been easy. We, as children, do not deal with the day-to-day struggles many times. In m […]
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Jerry Williams wrote a new post 5 years, 1 month ago
Mums journey was a very difficult one. Â I remember her first fall the day I gave birth to my daughter 21/12/2005 and her final day her body could take no more was 28/6/2016. Following her first fall mum noticed […]
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Jerry Williams wrote a new post 5 years, 1 month ago
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 n […]
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Jerry Williams wrote a new post 5 years, 1 month ago
Myositis Awareness Month got me thinking…and really, reflecting about a time before my initial flare-up almost three years ago, when Myositis wasn’t at the forefront of my consciousness—a notion that seems so for […]
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ac replied 4 years, 6 months ago
“…try to hold yourself in some degree of compassion, and understand that you’re a sick person and if you don’t live up to whatever expectations you might’ve had before all this started, it’s the expectations that are the problem, not you. ”
this made me pause…and cry. i’d like to “forget” that i am sick, and that this disease is, in actuality, pretty damn serious. and it is hard-and-fast; it doesnt “go away”, there is no cure or fix: we cant have an “immune system transplant” or blast it away with radiation.
big hugs. thanks for posting.
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Jerry Williams wrote a new post 5 years, 1 month ago
Leaves were starting to fall, the air was crisp, and the evenings started to feel much cooler. As each day went by, I noticed that I struggled more and more to get out of bed. I was starting to feel weak and I […]
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Jerry Williams published “Meme” 5 years, 1 month ago
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Jerry Williams's profile was updated 5 years, 1 month ago
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Hi Jerry! So sorry for the really late response. But, you know how this crazy disease goes. One day you’re fine, the next, not so much. Plus, I started my first Rituxan infusion last Friday which had me down for a good week. Next one is this Friday and then I go 6 months before the next 2. Thank you for the warm welcome and I’m glad to be here.
@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]