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rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
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I'm suffering, with rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al. I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to these, 10 Dem Senators either. @everylifeorg.bsky.social

submitted 42 days ago • 0 comments

#PresidentialAddress #PresidentialAddress2025 ⚠️⚠️⚠️ #Medicaid #HHS #Disability #DisabilityRights #NursingHome #NursingHomes #SaveMedicaid #RareDisease @dorismatsui.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @msnbc.com @maddow.msnbc.com @allinwithchris.bsky.social

submitted 52 days ago • 0 comments

⚠️SAVE MEDICAID & HHS: SAVE MY LIFE.⚠️ I'm bedridden, with comorbid, rare, fatal diseases, in a #NursingHome, paid by #Medicaid (as is true of 2/3 of all US nursing-home patients). If Medicaid is cut, I will be homeless & die. Contact info. for key Senators is in my posted letter. #SaveMedicaid

submitted 52 days ago • 0 comments

As International #WomensDay approaches, a reminder for the US: It wasn't #witches who were burned, drowned, & tortured; it was #women. & we are repeating history. There are times in history to gather #magic for common cause. #witch #witchsky #WitchesofBluesky #Salem #SalemWitchTrials #RoeVWade

submitted 53 days ago • 0 comments

After the #NIH- #FDA #RareDiseaseDay event ☠️, & slashing of #HHS depts, I ask the #RareDiseaseCaucus to address the #RareDisease community. Letters asking Sen Wicker & Rep Bilirakis to resign their Caucus chairs are in my feed. @amyklobuchar.com @dorismatsui.bsky.social @everylifeorg.bsky.social

submitted 56 days ago • 0 comments

28 FEB, 2025 #RareDiseaseDay & Economic Blackout Day Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients. About: instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==

submitted 58 days ago • 3 comments