RareDiseasePatient
@rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
RE blog:
"Trumpus" must become vernacular.
RE Dems & Schumer:
I'm suffering, w/ rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al.
I spent excruciating energy begging #Senators to oppose the budget. My life didn't matter to these Dem Senators either.😢💔
"Trumpus" must become vernacular.
RE Dems & Schumer:
I'm suffering, w/ rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al.
I spent excruciating energy begging #Senators to oppose the budget. My life didn't matter to these Dem Senators either.😢💔
March 15, 2025 at 8:22 AM
RE blog:
"Trumpus" must become vernacular.
RE Dems & Schumer:
I'm suffering, w/ rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al.
I spent excruciating energy begging #Senators to oppose the budget. My life didn't matter to these Dem Senators either.😢💔
"Trumpus" must become vernacular.
RE Dems & Schumer:
I'm suffering, w/ rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al.
I spent excruciating energy begging #Senators to oppose the budget. My life didn't matter to these Dem Senators either.😢💔
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
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
March 15, 2025 at 5:35 AM
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
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
Unforgivable.💔 It's difficult to know that my life doesn't mean anything to these #Democrats either.
March 15, 2025 at 5:32 AM
Unforgivable.💔 It's difficult to know that my life doesn't mean anything to these #Democrats either.
And yes, the 10 Dem #Senators who voted with the #Republicans do own what happens next, including the deaths of #disabled & #NursingHome patients like me.
@schiff.senate.gov @alexpadilla4ca.bsky.social @amyklobuchar.com @dorismatsui.bsky.social
@meactnet.bsky.social @msnbc.com @latimes.com
@schiff.senate.gov @alexpadilla4ca.bsky.social @amyklobuchar.com @dorismatsui.bsky.social
@meactnet.bsky.social @msnbc.com @latimes.com
March 15, 2025 at 5:11 AM
And yes, the 10 Dem #Senators who voted with the #Republicans do own what happens next, including the deaths of #disabled & #NursingHome patients like me.
@schiff.senate.gov @alexpadilla4ca.bsky.social @amyklobuchar.com @dorismatsui.bsky.social
@meactnet.bsky.social @msnbc.com @latimes.com
@schiff.senate.gov @alexpadilla4ca.bsky.social @amyklobuchar.com @dorismatsui.bsky.social
@meactnet.bsky.social @msnbc.com @latimes.com
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 those, 10 Dem Senators either.
@msnbc.com @latimes.com
I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to those, 10 Dem Senators either.
@msnbc.com @latimes.com
March 15, 2025 at 4:58 AM
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 those, 10 Dem Senators either.
@msnbc.com @latimes.com
I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to those, 10 Dem Senators either.
@msnbc.com @latimes.com
Thank you, @lawrenceodonnell.msnbc.com & @robinkelly.house.gov, for your attention to the impact of #Medicaid cuts on #NursingHomes.
I'm bedridden, w/ comorbid, fatal, rare diseases, in a #NursingHome, all paid w/ Medicaid. If Medicaid is cut, I will be homeless & die.
#SaveMedicaid; save my life.
I'm bedridden, w/ comorbid, fatal, rare diseases, in a #NursingHome, all paid w/ Medicaid. If Medicaid is cut, I will be homeless & die.
#SaveMedicaid; save my life.
March 7, 2025 at 8:20 AM
Thank you, @lawrenceodonnell.msnbc.com & @robinkelly.house.gov, for your attention to the impact of #Medicaid cuts on #NursingHomes.
I'm bedridden, w/ comorbid, fatal, rare diseases, in a #NursingHome, all paid w/ Medicaid. If Medicaid is cut, I will be homeless & die.
#SaveMedicaid; save my life.
I'm bedridden, w/ comorbid, fatal, rare diseases, in a #NursingHome, all paid w/ Medicaid. If Medicaid is cut, I will be homeless & die.
#SaveMedicaid; save my life.
...but a lovely statement about, EG, the 2/3 of #Medicaid -covered Americans, like me, in #NursingHomes, being a "flagrant waste of taxpayer dollars."
#PresidentialAddress #PresidentialAddress2025 #JointAddress #NursingHome #SaveMedicaid
#PresidentialAddress #PresidentialAddress2025 #JointAddress #NursingHome #SaveMedicaid
March 5, 2025 at 8:20 PM
...but a lovely statement about, EG, the 2/3 of #Medicaid -covered Americans, like me, in #NursingHomes, being a "flagrant waste of taxpayer dollars."
#PresidentialAddress #PresidentialAddress2025 #JointAddress #NursingHome #SaveMedicaid
#PresidentialAddress #PresidentialAddress2025 #JointAddress #NursingHome #SaveMedicaid
#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
⚠️⚠️⚠️
#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
March 5, 2025 at 9:52 AM
The nonsense about Bobby leading the HHS didn't do me any good either.
March 5, 2025 at 9:33 AM
The nonsense about Bobby leading the HHS didn't do me any good either.
#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
March 5, 2025 at 9:31 AM
#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
March 5, 2025 at 9:30 AM
Oh, @joyannreid.bsky.social, I wish that I'd known you were in LA. I'm l in a Medicaid-paid nursing home in the area, & would love to talk w a great journalist RE what this administration is doing to #disabled ppl & us in #NursingHomes again (after killing us, as a "sacrifice," during COVID).
March 1, 2025 at 9:05 PM
Oh, @joyannreid.bsky.social, I wish that I'd known you were in LA. I'm l in a Medicaid-paid nursing home in the area, & would love to talk w a great journalist RE what this administration is doing to #disabled ppl & us in #NursingHomes again (after killing us, as a "sacrifice," during COVID).
28 FEB, 2025
#RareDiseaseDay
& Economic Blackout Day
Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients.
About:
instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
#RareDiseaseDay
& Economic Blackout Day
Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients.
About:
instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
February 27, 2025 at 1:34 PM
28 FEB, 2025
#RareDiseaseDay
& Economic Blackout Day
Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients.
About:
instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
#RareDiseaseDay
& Economic Blackout Day
Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients.
About:
instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
URGENT: SAVE MEDICAID TO SAVE MY LIFE:
I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead.
Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead.
Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
February 25, 2025 at 8:44 PM
URGENT: SAVE MEDICAID TO SAVE MY LIFE:
I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead.
Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead.
Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
🧵3/3
#RareDiseaseDay
28 FEB, 2025, cont...
...and attempts to cut #Medicaid. My #NursingHome, medications, & treatment for fatal #RareDiseases, are paid for w/ Medicaid. Without Medicaid, I will be homeless & dead.
instagram.com/p/DGPrdLbxUpa/?igsh=MzRlODBiNWFlZA==
@maddow.msnbc.com
#RareDiseaseDay
28 FEB, 2025, cont...
...and attempts to cut #Medicaid. My #NursingHome, medications, & treatment for fatal #RareDiseases, are paid for w/ Medicaid. Without Medicaid, I will be homeless & dead.
instagram.com/p/DGPrdLbxUpa/?igsh=MzRlODBiNWFlZA==
@maddow.msnbc.com
February 20, 2025 at 12:13 PM
🧵3/3
#RareDiseaseDay
28 FEB, 2025, cont...
...and attempts to cut #Medicaid. My #NursingHome, medications, & treatment for fatal #RareDiseases, are paid for w/ Medicaid. Without Medicaid, I will be homeless & dead.
instagram.com/p/DGPrdLbxUpa/?igsh=MzRlODBiNWFlZA==
@maddow.msnbc.com
#RareDiseaseDay
28 FEB, 2025, cont...
...and attempts to cut #Medicaid. My #NursingHome, medications, & treatment for fatal #RareDiseases, are paid for w/ Medicaid. Without Medicaid, I will be homeless & dead.
instagram.com/p/DGPrdLbxUpa/?igsh=MzRlODBiNWFlZA==
@maddow.msnbc.com
🧵2/3
#RareDiseaseDay
28 FEB, 2025, cont...
...the #ValentinesDayMassacre of #CDC, #NIH, & #FDA, funding cuts, research freezes, halts to clinical trials & medication approvals, removal & alteration of public health INFO, hacking of our health data,...
@maddow.msnbc.com @clairecmc.bsky.social
#RareDiseaseDay
28 FEB, 2025, cont...
...the #ValentinesDayMassacre of #CDC, #NIH, & #FDA, funding cuts, research freezes, halts to clinical trials & medication approvals, removal & alteration of public health INFO, hacking of our health data,...
@maddow.msnbc.com @clairecmc.bsky.social
February 20, 2025 at 12:04 PM
🧵2/3
#RareDiseaseDay
28 FEB, 2025, cont...
...the #ValentinesDayMassacre of #CDC, #NIH, & #FDA, funding cuts, research freezes, halts to clinical trials & medication approvals, removal & alteration of public health INFO, hacking of our health data,...
@maddow.msnbc.com @clairecmc.bsky.social
#RareDiseaseDay
28 FEB, 2025, cont...
...the #ValentinesDayMassacre of #CDC, #NIH, & #FDA, funding cuts, research freezes, halts to clinical trials & medication approvals, removal & alteration of public health INFO, hacking of our health data,...
@maddow.msnbc.com @clairecmc.bsky.social
#RareDiseaseDay
28 FEB, 2025,
...after confirmation of #RFK to #HHS,...
🧵1/3
@nordrare.bsky.social @everylifeorg.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @joyannreid.bsky.social @aoc.bsky.social @alexwags.bsky.social @maddow.msnbc.com @lawrenceodonnell.msnbc.com
28 FEB, 2025,
...after confirmation of #RFK to #HHS,...
🧵1/3
@nordrare.bsky.social @everylifeorg.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @joyannreid.bsky.social @aoc.bsky.social @alexwags.bsky.social @maddow.msnbc.com @lawrenceodonnell.msnbc.com
February 20, 2025 at 11:57 AM
#RareDiseaseDay
28 FEB, 2025,
...after confirmation of #RFK to #HHS,...
🧵1/3
@nordrare.bsky.social @everylifeorg.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @joyannreid.bsky.social @aoc.bsky.social @alexwags.bsky.social @maddow.msnbc.com @lawrenceodonnell.msnbc.com
28 FEB, 2025,
...after confirmation of #RFK to #HHS,...
🧵1/3
@nordrare.bsky.social @everylifeorg.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @joyannreid.bsky.social @aoc.bsky.social @alexwags.bsky.social @maddow.msnbc.com @lawrenceodonnell.msnbc.com
Can you please #help me pay for #surgery, #medical care, & to return #home?:
💔GoFundMe.com/HOPE-for-a-RareDisease-Patient
#NursingHome #RareDisease #Fundraiser #Donate #Share #DonateorShare #HelpingOthers #Neurosurgery #OrthopedicSurgery #EhlersDanlosSyndrome #MadelungsDeformity #AddisonsDisease
💔GoFundMe.com/HOPE-for-a-RareDisease-Patient
#NursingHome #RareDisease #Fundraiser #Donate #Share #DonateorShare #HelpingOthers #Neurosurgery #OrthopedicSurgery #EhlersDanlosSyndrome #MadelungsDeformity #AddisonsDisease
November 20, 2024 at 6:20 AM
Can you please #help me pay for #surgery, #medical care, & to return #home?:
💔GoFundMe.com/HOPE-for-a-RareDisease-Patient
#NursingHome #RareDisease #Fundraiser #Donate #Share #DonateorShare #HelpingOthers #Neurosurgery #OrthopedicSurgery #EhlersDanlosSyndrome #MadelungsDeformity #AddisonsDisease
💔GoFundMe.com/HOPE-for-a-RareDisease-Patient
#NursingHome #RareDisease #Fundraiser #Donate #Share #DonateorShare #HelpingOthers #Neurosurgery #OrthopedicSurgery #EhlersDanlosSyndrome #MadelungsDeformity #AddisonsDisease