@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 π people, books, traveling & laughing.
Adore this
11.01.2025 20:28 β π 4 π 0 π¬ 0 π 0Happy 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!!
π
08.01.2025 02:35 β π 0 π 0 π¬ 0 π 0Not all Americans!!!! Some of us are mortified and terrified.
08.01.2025 02:33 β π 10 π 0 π¬ 0 π 0Critical for patients and caregivers to know this regarding EMRs.
08.01.2025 02:30 β π 2 π 1 π¬ 0 π 0My world π
07.01.2025 14:30 β π 1 π 0 π¬ 0 π 0SOCIAL 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 )
Gorgeous
06.01.2025 12:55 β π 1 π 0 π¬ 0 π 0also 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 π 0 π 0 π¬ 0 π 0ensure 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. Itβs been insane. She has 2
05.01.2025 20:03 β π 0 π 0 π¬ 1 π 0We 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
Whoβs attending #RareDiseaseWeek in DC this February?
Excited to attend!
Absolutely π― me
05.01.2025 19:50 β π 2 π 0 π¬ 0 π 0Makes me laugh every time I see it. My son rolls his eyes butβ¦β¦. resemblance, no?
05.01.2025 17:37 β π 0 π 0 π¬ 0 π 0Down with *UnitedWealthCare* Up with Universal Health Care. π
27.12.2024 16:15 β π 12874 π 2395 π¬ 101 π 82God forbid if she went into MH.
29.12.2024 02:35 β π 1 π 0 π¬ 1 π 0When was this?
29.12.2024 02:34 β π 0 π 0 π¬ 0 π 0Instead of manifest destiny, maybe try manifesting decent healthcare.
29.12.2024 00:44 β π 11244 π 1520 π¬ 184 π 50I saw previews when I went to Wicked. It looked good. Iβm going to try to go.
29.12.2024 02:31 β π 1 π 0 π¬ 0 π 0Whooping Cough π·
29.12.2024 02:31 β π 1 π 0 π¬ 0 π 0On 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 π 1 π 0 π¬ 0 π 0Thank 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.ππ
www.nbcnews.com/health/healt...
We MUST stay united and EMBRACE 2025 TOGETHER! Never give up. Onward!ππ₯
28.12.2024 18:23 β π 1411 π 235 π¬ 47 π 7