Activity
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Myositis Support published “Story” 1 month ago
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Marty Sasser became a registered member 1 month, 1 week ago
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McKenna Telke published “Story” 1 month, 1 week ago
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McKenna Telke wrote a new post, The Healing Power of Creativity 1 month, 1 week ago
I’ve been creating for as long as I can remember. I would create complex storylines, characters, and unique worlds. Art and writing are things that have always been a comfort to me, a therapy, and not just that b […]
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Linda Rabinowitz replied 1 month, 1 week agoSo much soothing inspiration from someone so young! (Not to mention talented) Thank you McKenna!
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McKenna Telke replied 3 weeks, 1 day ago
I am so glad to hear that you were inspired by my article. I hope that you may find yourself on a creative journey yourself as well. And I am so glad that you enjoyed my artwork. 😄❤️
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McKenna Telke changed their profile picture 1 month, 1 week ago
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Robert M Soward posted an update 1 month, 2 weeks ago
Are any other members Veterans?
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Robert M Soward posted an update 1 month, 2 weeks ago
I tried CBG and that helped relieve some of the pain within my body.
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Linda Rabinowitz published “Story” 1 month, 2 weeks ago
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Linda Rabinowitz wrote a new post, Myositis Awareness Month Honesty 1 month, 2 weeks ago
It’s May so Myositis Awareness Month has arrived. Myositis is a crazy weird group of diseases, so I guess it makes sense that someone crazy and weird like me should have it! 🤓🥸 I have refractory (a disease or con […]
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Jerry Williams replied 1 month, 2 weeks agoIt’s so great to see you writing again, @momluvs4kidz! I am sorry for your struggles, again, and so very hope that Rituxan will once again be a saving grace for your lungs and that your muscle strength improves. These flares seem to weaken us more each time. Thank you for sharing your experiences and for being so willing to help others. So much love to you!
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Linda Rabinowitz replied 1 month, 2 weeks ago
My love is with you right back. I’ve gotten good at seeing where muscle loss has happened…don’t know if that’s a good thing to get good at but here we are 🤷🏻♀️🤭 lol.
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Mary Lewis replied 1 month, 1 week agoLinda, thank you for writing this and sharing your Myositis journey and experience so openly and honestly. You are an amazing warrioress and have been hugely supportive to me. I, too, am so hopeful that with starting the Rituxan, you will experience some sustained improvement. And again, thank you for writing and in so doing, helping and supporting us ALL! You rock!
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Linda Rabinowitz replied 1 month, 1 week ago
💙💙
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Robert M Soward became a registered member 1 month, 2 weeks ago
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Luboš Tichý became a registered member 1 month, 3 weeks ago
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McKenna Telke became a registered member 1 month, 3 weeks ago
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Beverley Sprague became a registered member 2 months ago
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Lizzy Finn wrote a new post, Navigating ambiguity, building resilience, and celebrating wins: what I have learned after three years with a rare disease 2 months ago
I write this sat in the infusion clinic at Royal Melbourne Hospital. I am surrounded by other people, just like me, hooked up to beeping drips slowly feeding their ailing bodies various potions and […]
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Louie Doblado changed their profile picture 3 months ago
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Lizzy Finn published “Story” 3 months, 2 weeks ago
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Lizzy Finn wrote a new post, Rituximab – what to expect 3 months, 2 weeks ago
One of the (many) downsides of having a rare disease, is that there are limited accounts or experiences from real patients who are going through the same thing as you. That is why #MyositisLife is such a fantastic […]
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Jerry Williams posted an update 3 months, 2 weeks ago
MSU has given $250k in Myositis Patient Financial Assistance! https://understandingmyositis.org/250k-myositis-patient-financial-assistance/
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Polly Wood became a registered member 4 months, 1 week ago
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