iiinova — where your digital self keeps evolving

RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

Another major life milestone, another horrible emergency: www.instagram.com/p/DTHyaLklD9... Can you help by donating any dirivitive of 55 ($0.55, $5.50, $55, $550,...) for my birthday?: Tiny.cc/RareDiseaseHope

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

⚠️EMERGENCY⚠️ I'm out of the (abusive) nursing home, with no monthly funds for an assisted-living facility. I may be homeless as of 9 Jan. Can you help, please? www.instagram.com/p/DTHW1m8lM0... To help with uncovered meds, please see the OTCS, esp. Quercetin, in my Amazon Wish List: Tiny.cc/7tujuz

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

#DisabilityDiscrimination by META: How I responded: www.instagram.com/p/DTG9i0kARl... I was offline during a critical emergency. Can you help, please?: Tiny.cc/RareDiseaseHope

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

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

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RareDiseasePatient @rarediseasepatient.bsky.social · 05/03/2025

⚠️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

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RareDiseasePatient @rarediseasepatient.bsky.social · 04/03/2025

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

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

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

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RareDiseasePatient @rarediseasepatient.bsky.social · 27/02/2025

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==

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RareDiseasePatient @rarediseasepatient.bsky.social · 26/02/2025

28 FEB is #RareDiseaseDay. There are 30,000,000 rare-disease patients in the US. NIH & FDA cuts stopped our clinical trials & treatments. Now, Medicaid cuts will kill us. When boycotting on 2/28, please give the $ you save to the fundraisers of rare-disease patients. www.yahoo.com/news/no-amaz...

yahoo.com

'No Amazon, no Walmart, no fast food': What's behind the 'Feb. 28 economic blackout'

The People's Union USA, a self-described “grassroots movement” founded by John Schwarz, is encouraging Americans to refrain from making non-essential purchases on Friday.

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RareDiseasePatient @rarediseasepatient.bsky.social · 25/02/2025

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.

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RareDiseasePatient @rarediseasepatient.bsky.social · 24/02/2025

⚠️URGENT: MEDICAID,⚠️ DISABILITY, & NURSING HOMES: I am severely disabled, with rare, fatal diseases, in a skilled nursing home. ⚠️If Medicaid is cut, I will be immediately HOMELESS & DEAD.⚠️ PLEASE SAVE MEDICAID, & SAVE MY LIFE: Call & write to House Representatives before votes on 2/24-2/25.

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RareDiseasePatient @rarediseasepatient.bsky.social · 24/02/2025

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RareDiseasePatient @rarediseasepatient.bsky.social · 30/01/2025

Just a point of order: @maddow.msnbc.com tonight: "In all likelihood, you don't have a family crest." My mother's family name was #Davies. 😕🤦🏼‍♀️ #FamilyCrest On a more serious note: I'll try to post my letter to Senators to vote NO on #RFK tonight. I'm #disabled, in a #NursingHome, on #Medicaid.

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RareDiseasePatient @rarediseasepatient.bsky.social · 21/11/2024

Please don't forget the #disabled as a historic target & casualty.

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Reposted by RareDiseasePatient

BladeoftheSun @bladeofthes.bsky.social · 20/11/2024

How many of these do we have?

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RareDiseasePatient @rarediseasepatient.bsky.social · 16/11/2024

My contention since the 110th Congress: All persons with a penis living or traveling in the US must be required to have a vasectomy. Temporary reversal may be applied for and adjudicated by panels of qualified persons with a uterus. Until then, I believe that Lysistrata had it right all along.

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Reposted by RareDiseasePatient

Brittany @iambrittany.bsky.social · 12/11/2024

I love that so many are advocating for libraries on my TL. If you don't know already, you can connect your library card to Libby, which allows you to read books on the Kindle store for FREE. #Booksky

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Reposted by RareDiseasePatient

Hazie @hazie.bsky.social · 13/11/2024

I’m guessing I’m in some sort of starter pack about COVID, Long COVID and or masking & mitigations. I have gained over a 1k followers and and somewhat overwhelmed. Thank you to whoever included me. I’ll try to live up to your recommendation. Masks Keep Us Safe. xo

Poster:
COVID CAN HAVE LONG TERM EFFECTS
Cream coloured background with a circle of red circles around a burgundy circle with various black silhouettes interspersed.
Text:
GET ON YOUR NERVES. NEVRE PAIN, NUMB HANDS & FEET, RINGING EARS, TREMORS
TURN YOUR STOMACH. HEARTBURN, DIARRHEA, CONSTIPATION, NAUSEA, CRAMPS
BREAK YOUR HEART. CHEST PAIN FAST, SLOW OR SKIPPED BEATS, SHORT BREATH
CHANGE YOUR MIND. DARK MOOD, POOR MEMORY, STRESS, ANGER, FEAR
MAKE YOU LOSE YOUR SENSE. BLURRY VISION, LOSS OF TASTE & SMELL, RINGING EARS
TAKE YOUR BREATH. WHEEZING, COUGHING, BLOD CLOT, BRUISES, HIVES
MAKE YOUR SKIN CRAWL. BROKEN SKIN, RASHES, BRUISES, HIVES
MASKS KEEP US SAFE
@bircovidhealth twitter & instagram

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