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.😢💔
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.
Goddess, things are so terrible that I forgot about such a happy day. Here's to all of the glorious nerds in the world who celebrate #PiDay.🤓❤️ May sharp minds & education survive this period in US history.🙏🏼🫂
March 15, 2025 at 5:22 AM
Goddess, things are so terrible that I forgot about such a happy day. Here's to all of the glorious nerds in the world who celebrate #PiDay.🤓❤️ May sharp minds & education survive this period in US history.🙏🏼🫂
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.
Completely horrible & stupid, yes,...
but I am your friendly #vegan, and #RareDisease patient invested in scientific advancement, here, to remind you that animal #vivisection is horrible & stupid anyway, for any reason.
but I am your friendly #vegan, and #RareDisease patient invested in scientific advancement, here, to remind you that animal #vivisection is horrible & stupid anyway, for any reason.
March 6, 2025 at 1:44 AM
Completely horrible & stupid, yes,...
but I am your friendly #vegan, and #RareDisease patient invested in scientific advancement, here, to remind you that animal #vivisection is horrible & stupid anyway, for any reason.
but I am your friendly #vegan, and #RareDisease patient invested in scientific advancement, here, to remind you that animal #vivisection is horrible & stupid anyway, for any reason.
...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
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
This research additionally aids in the development of treatments & cures for #RareDisease. 😢💔🦓🤍
March 5, 2025 at 7:38 AM
This research additionally aids in the development of treatments & cures for #RareDisease. 😢💔🦓🤍
I think that what has been necessary, for too long, is direct, magical (and responsible) action; mundane, human means are no longer sufficient for the danger & harm. There comes a time for #witches to gather, in the light, and unite energies for a common purpose in history (lest it repeat).✨🌛🌝🌜✨
March 4, 2025 at 6:00 AM
I think that what has been necessary, for too long, is direct, magical (and responsible) action; mundane, human means are no longer sufficient for the danger & harm. There comes a time for #witches to gather, in the light, and unite energies for a common purpose in history (lest it repeat).✨🌛🌝🌜✨
Anyone ever notice how many of the Sprouts products we love are from Canada? And when our x-friends have to compensate and our chocolate chips & maple syrup become unaffordable...that may be a good thing because there will be no natural sedatives holding back a population of pissed-off women.😡
March 4, 2025 at 5:16 AM
Anyone ever notice how many of the Sprouts products we love are from Canada? And when our x-friends have to compensate and our chocolate chips & maple syrup become unaffordable...that may be a good thing because there will be no natural sedatives holding back a population of pissed-off women.😡
NB: I've been measuring morality in watching who celebrates what:
We know a lot when the leader of a democracy is disrespected by a dictator & a misogynist in the oval, & the right celebrates.
We know a lot when a network cuts @joyannreid.bsky.social, & the Nazis on X celebrate. Dumb, @msnbc.com.
We know a lot when the leader of a democracy is disrespected by a dictator & a misogynist in the oval, & the right celebrates.
We know a lot when a network cuts @joyannreid.bsky.social, & the Nazis on X celebrate. Dumb, @msnbc.com.
March 1, 2025 at 9:16 PM
NB: I've been measuring morality in watching who celebrates what:
We know a lot when the leader of a democracy is disrespected by a dictator & a misogynist in the oval, & the right celebrates.
We know a lot when a network cuts @joyannreid.bsky.social, & the Nazis on X celebrate. Dumb, @msnbc.com.
We know a lot when the leader of a democracy is disrespected by a dictator & a misogynist in the oval, & the right celebrates.
We know a lot when a network cuts @joyannreid.bsky.social, & the Nazis on X celebrate. Dumb, @msnbc.com.
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).
😥🦓💔 I still don't have an answer RE one of my treatments. The 1st life-saving auto injector for rapidly-fatal adrenal crisis was to finish trials & be approved by FDA this year, and now...?☠️💔
This destruction of the HHS (& all gov) is so horrific. I think that someone needs a visit by 3 ghosts.😡
This destruction of the HHS (& all gov) is so horrific. I think that someone needs a visit by 3 ghosts.😡
March 1, 2025 at 4:32 AM
😥🦓💔 I still don't have an answer RE one of my treatments. The 1st life-saving auto injector for rapidly-fatal adrenal crisis was to finish trials & be approved by FDA this year, and now...?☠️💔
This destruction of the HHS (& all gov) is so horrific. I think that someone needs a visit by 3 ghosts.😡
This destruction of the HHS (& all gov) is so horrific. I think that someone needs a visit by 3 ghosts.😡
Thank you for sharing. I've been wanting the Rare Disease Caucus chairs to make s statement to us about everything. It was weird enough that none of them were scheduled to speak.
Since their recent votes, I've asked Sen Wicker & Rep B to resign their Caucus chairs. My letters are in my feed.
Since their recent votes, I've asked Sen Wicker & Rep B to resign their Caucus chairs. My letters are in my feed.
March 1, 2025 at 4:25 AM
Thank you for sharing. I've been wanting the Rare Disease Caucus chairs to make s statement to us about everything. It was weird enough that none of them were scheduled to speak.
Since their recent votes, I've asked Sen Wicker & Rep B to resign their Caucus chairs. My letters are in my feed.
Since their recent votes, I've asked Sen Wicker & Rep B to resign their Caucus chairs. My letters are in my feed.