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IVIG saved me in the beginning of my dermatomyositis journey - stopping the dysphagia, helping my rashes, and improving my muscle weakness. Yet no matter how we changed the speed, fluids, premeds, etc we just couldn’t get it right and after landing in the ER with head splitting migraines 3 times I had to stop. I would spend 2 consecutive days at the infusion center a month, usually about 7 hours each day. It would take me about a week to fully recover from the IVIG and I’d have maybe 2 weeks of
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I went from having my health be kind of a sidebar of my life to priority number one. It is the easiest thing to take for granted when you have it, and the most coveted (and sometimes elusive) thing to obtain once you’re sick. Truthfully I can’t even remember what it felt like to be truly healthy at this point. I’m still grateful though for how far I’ve come. #dermatomyositis #raredisease #autoimmunedisease #autoimmunewarrior #invisibleillness #healingjourney #chronicillness
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