@momluvs4kidz
Member since March 26, 2019
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Linda Rabinowitz commented on the post, The Healing Power of Creativity 2 years, 3 months ago
So much soothing inspiration from someone so young! (Not to mention talented) Thank you McKenna!
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Linda Rabinowitz commented on the post, Myositis Awareness Month Honesty 2 years, 3 months ago
💙💙
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Linda Rabinowitz commented on the post, Myositis Awareness Month Honesty 2 years, 3 months 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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Linda Rabinowitz published “Story” 2 years, 3 months ago
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Linda Rabinowitz wrote a new post 2 years, 3 months 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 2 years, 3 months 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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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 2 years, 3 months 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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💙💙
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Linda Rabinowitz commented on the post, Unexpected lessons learned while facing my new reality 4 years, 9 months ago
First-I’m so glad you shared and I hope that it helped writing this and sharing; know also that you’ve most definitely helped others ❤️
I’ve been getting rituxan for most of about 3 years. I e tried IVIG, 4 tries and 4 bouts of meningitis so at least for some time, that option is out the window.
I’m assuming you’ve since gotten your rituxan,…[Read more] -
Linda Rabinowitz commented on the post, My Mom Has Dermatomyositis (DM) 4 years, 9 months ago
I hate that he has to be my caregiver, but he does a really good job 💙💙 Caregivers go through SO much, I hope more share their stories.
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Linda Rabinowitz commented on the post, Facing rare disease alone 4 years, 10 months ago
I’ve done my chronic illness partner-less so it’s my normal… it still sucks but it’s all I know. I feel so bad for you. I know you’re strong, you know you’re strong and will get through but right not, or sucks.
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Linda Rabinowitz commented on the post, Going out of my head 4 years, 11 months ago
I’m in tears reading this, especially about the kids, and not being able to be the parent you were (and liked!) before this disease so rudely took hold. I know you’ll not give up and I know you know you’re not a failure but yes those feelings still come on and having this forum and others from MSU are so helpful in letting us just express it! Y…[Read more]
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Linda Rabinowitz wrote a new post 5 years, 1 month ago
Pain Never SleepsI wake as tears begin to flow, I cry before I even know what brought them on, And then, Realization . . . The pain that never ends, it seems has found its way into my dreams.
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Linda Rabinowitz wrote a new post 5 years, 4 months ago
The Other Pain of Living With MyositisI’m feeling so incredibly, painfully lonely. I don’t know what to do with the, almost, physical pain of it. Mostly I can fake it, but it’s getting harde […]