Beth Steckler's Avatar

Beth Steckler

@purplemamabear.bsky.social

Patient advocate, advocate for healthcare reform, wife/mom of those w #rarediseases, rare disease legislative advocate, interested in systems, sociology, psychology. Enjoy hiking & kayaking. Love πŸ’• people, books, traveling & laughing.

329 Followers  |  446 Following  |  347 Posts  |  Joined: 23.09.2023  |  1.6326

Latest posts by purplemamabear.bsky.social on Bluesky

Post image 11.01.2025 23:36 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Adore this

11.01.2025 20:28 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Happy to report that the @asanews.bsky.social Disability in Society Section has a BlueSky account!

@asadisability.bsky.social

Thanks to @jessical-2022.bsky.social for setting this up!!

Follow us!!

06.01.2025 17:39 β€” πŸ‘ 33    πŸ” 12    πŸ’¬ 2    πŸ“Œ 1
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πŸ’”

08.01.2025 02:35 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Not all Americans!!!! Some of us are mortified and terrified.

08.01.2025 02:33 β€” πŸ‘ 10    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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a woman in a black shirt is pointing up at the word this in pink letters ALT: a woman in a black shirt is pointing up at the word this in pink letters
08.01.2025 02:31 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Critical for patients and caregivers to know this regarding EMRs.

08.01.2025 02:30 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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My world 🌎

07.01.2025 14:30 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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SOCIAL SECURITY IS OUR MONEY! IT WILL ALWAYS BE. WE PAID FOR IT. I SUBSIST ON IT AS DO MILLIONS, FOR US IT IS OUR ONLY SOURCE OF INCOME. SENIORS PEOPLE W/DISABILITIES/VETERANS & PEOPLE WHO RECEIVE SURVIVORS BENEFITS. WE WILL FIGHT TOOTH & NAIL FOR THIS PROGRAM!

(Thank you @socialsecurityworks.org )

06.01.2025 17:34 β€” πŸ‘ 4909    πŸ” 1330    πŸ’¬ 129    πŸ“Œ 40

Gorgeous

06.01.2025 12:55 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

also almost died twice due to the hospital not reaching out to her specialists. Young people can have chronic pain & complex health issues. This is hard enough but the medical trauma often endured is brutal. 3

05.01.2025 20:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

ensure they will not die due to lack of quality & collaborative care. Also, financially cost for her is lower even though I am basically been paying a second mortgage. No patient with insurance & Medicare should be paying minimum of $25,000 out of pocket for medication. It’s been insane. She has 2

05.01.2025 20:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

We have made it officially & my daughter now permanently resides in the next state over so she can access quality and compassionate medical care.

People with complex health should not have to move out of their state that their family and friends are in order to access appropriate care and 1

05.01.2025 20:03 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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a blue and red circle with the words we come together for rare disease ALT: a blue and red circle with the words we come together for rare disease

Who’s attending #RareDiseaseWeek in DC this February?

Excited to attend!

05.01.2025 19:54 β€” πŸ‘ 0    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
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Absolutely πŸ’― me

05.01.2025 19:50 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Makes me laugh every time I see it. My son rolls his eyes but……. resemblance, no?

05.01.2025 17:37 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Down with *UnitedWealthCare* Up with Universal Health Care. πŸ’™

27.12.2024 16:15 β€” πŸ‘ 12874    πŸ” 2395    πŸ’¬ 101    πŸ“Œ 82
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God forbid if she went into MH.

29.12.2024 02:35 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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When was this?

29.12.2024 02:34 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Instead of manifest destiny, maybe try manifesting decent healthcare.

29.12.2024 00:44 β€” πŸ‘ 11244    πŸ” 1520    πŸ’¬ 184    πŸ“Œ 50

I saw previews when I went to Wicked. It looked good. I’m going to try to go.

29.12.2024 02:31 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Whooping Cough 😷

29.12.2024 02:31 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

On Medicare I still had to assist my adult kids - they had to pay over $50,000 out of pocket. Unbelievable. This was bc they were a wee bit above poverty level & could not also access Medicaid.

29.12.2024 02:26 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Medicare's $2,000 prescription drug cap expected to bring major relief to cancer patients The new price cap, part of the Inflation Reduction Act, will apply to all prescription drugs covered by Medicare.

Thank YOU President Biden & VP Harris for this. Everyone on Medicare will benefit, this is such an overlooked accomplishment for those of us who have multiple & costly medications. Remember this serves Seniors/Survivors/People With Disabilities & Veterans! AMAZING.πŸ™πŸ’œ

www.nbcnews.com/health/healt...

28.12.2024 20:10 β€” πŸ‘ 1444    πŸ” 439    πŸ’¬ 33    πŸ“Œ 17

We MUST stay united and EMBRACE 2025 TOGETHER! Never give up. Onward!πŸ’œπŸ”₯

28.12.2024 18:23 β€” πŸ‘ 1411    πŸ” 235    πŸ’¬ 47    πŸ“Œ 7

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