MotilityDisorder

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Anyone with experience with hospice?

Due to issues with my current palliative provider began the process of looking for another. New agency, whom I like so far, has suggested I'd be better served on hospice as they could provide almost everything at home and bring some continuity of care, something i currently struggle with a lot. Would love to hear of others experience. Especially with difference with palliative and hospice. TIA for sharing! #Hospice #Dysautonomia #GastrointestinalDiscomfort #Gastroparesis #MotilityDisorder #FeedingTube #ivfluids #Pacemaker #PureAutonomicFailure #FailureToThrive #ChronicIllness #chronic pain

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what is wrong with me though?

None of my doctors can ever tell me what exactly is wrong with me. They just go back to my weight! I know I have undifferentiated Mixed Connective Tissue Disease. I’m now having neuro symptoms including muscle weakness, twitching, motility issues. i have to get my esophagus dilated and Botox injection in my esophagus and now need a liver biopsy. I have new dry patches on my wrist and ankle and my fingers swell. My bloodwork is pretty normal right now. So frustrating trying to figure it out!
#venting #UnknownIllness #MotilityDisorder

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