I am so very sorry for not keeping up with this petition. Unfortunately , this is one of the main reasons we can’t fight for our rights like we should. Our illnesses dictate what we do on a minute by minute process. I will explain my absence. 

On April 9, 2025 I had a medical event that landed me in the hospital for 15 days. And because the hospital refused to update my medical record I was quickly labeled as a SUD patient; even though I am a neuropalliative care patient. I had that paperwork with me to prove it. But it took 10 days for them to realize I wasn’t an addict and that I knew what I was saying. 10 days of being abused and traumatized; over and over again. Each medical professional. There are over 100 progress notes BUT they refused to post them for my provides until I was discharged for four days to post all the notes.  

My neuropalliative care doctor couldn’t do anything because the hospital was withholding records from the electronic chart so that they couldn’t see them. I now see myself in a situation of needing to file a lawsuit of discrimination, neglect, abuse, and malpractice.

I quite literally must have had some form of stroke as my right side is still a mess almost 2 months later. The brain MRI didn’t get done until I begged neuropalliative care doctor to please ease my mind that I didn’t have a stroke. But because the report doesn’t specifically state stroke, they consider it normal. Despite ALL of the new verbiage in the report.

 I now REQUIRE a mobility aide. I cannot do anything independently anymore without supervision because of what happened on April 9th. I walked out t of my Josie and couldn’t get out of our SUV at the hospital 5-7 minutes later? But they ruled it “anxiety” and “hypermobile Ehlers Danlos complications”.

They only have 11 of my 22 medication allergies!! They didn’t have any medications updated! HOW did they make informed decisions on my healthcare if they didn’t have any of the correct info?!?! When I was also presenting them the latest and last visit with my neuropalliative care docs!!! This overly traumatized me and I feel if we don’t all start speaking up, we won’t be heard.  I can’t let that happen.

Please put this into overdrive and share it everywhere you possibly can. I apologize for not being able to update anyone. I’ve been bed ridden since December. It’s been terrible. I appreciate any and all that have read, shared and signed and taken note of the discrepancies of the healthcare system in the US!! We need some momentum to drive this to the white house! Please, I beg of you!