Thread by @purplemamabear

Warning ⚠️ ⛔️ : Uncomfortable Thread 🪡
My tweets lately have focused on my daughter’s #healthcare at @SanfordHealth & our struggle to access appropriate & compassion care where her agency is not taken away. I know the threads my be uncomfortable for some particularly if you 1

are a #medical professional. I am aware that many are thinking 💭‘what’s the back story’, ‘something they did caused this no #medical facility or #medical #professional would partake in this’. I get that. There IS a back story. A child at 2 wks having her 1st #hereditary 2

#pancreatitis flare. In 1st grade undergoing her 1st #transplant. In 6th grade undergoing 2nd #transplant. Complications, no real follow up. Complications being ignored. Physicians both on #transplant team as well as others questioning her symptoms, her #pain. Dismissing & 3

ignoring. Then when issue was found 2 be ‘legitimate’ no acknowledgment by the #physicians that they were sorry 4 not listening to her, 4 blaming her. My once extremely confident daughter gave up. She did NOT trust doctors, she did NOT take care of herself, she was no longer 4

pleasant w #medical professionals thanking them after IV placement or after placement of NG tube. She felt lied to & betrayed but not only medical professionals but by me. And she had good reason. I understood why she was this way yet it terrified me. For several years I was 5

so afraid I’d lose her. Her #behaviors made sense to me but to #medical #professionals she was ‘uncompliant’ she was a ‘frequent flyer’ she was a ‘drug seeker’ that’s how she was scene. No matter how honest I tried to be, how upfront many #medical #professionals did not 6

& because of this added to the snowball gaining speed going down the mountain. The last several years my daughter has grown. She has worked hard to address the #trauma she has experienced. I am incredibly proud of her YET that snowball is still gaining speed & out of control. 7

I often see posts of #violence towards #medical #professionals. I don’t ‘look away’ it IS a problem one that must be addressed. #Medical #professionals should feel safe. There is never a time when calling names, threatening or harming someone is acceptable. Never. YET there is 8

another side that is often NOT talked about or acknowledged- the #violence towards #patients & #caregivers. It may not look like the #violence #physicians & other #medical #professionals exp but it is #violence - it is being #labeled, it is being dismissed, it is being 9

#gaslit, it is having your #agency taken. It happens. I think being in #healthcare is an extremely difficult job, that there are good people that are not only working to care for #patients but also improve the system. Yet, there are people whose intentions are NOT good, there 10

are admin, #physicians & #nurses whose actions regularly #harm #patients.
What my daughter has experienced the last several years is NOT ok & it IS occurring. It’s dehumanizing, shaming & has impacted access to appropriate care. Her safety has been jeopardized a number 11

of times. Requests to reach out to specialists or be transferred denied. And for years this issue of her injecting herself w #insulin has been a focus EVEN though there is a note from one of top #specialist in this area outlining that it is normal for post AITTP #patients to 12

experience the issues she has. YET no one seems to have read it. I have been labeled ‘aggressive’. I have NEVER called anyone names, threatened or harmed anyone NOR would I EVER. I have #advocated 4 my daughter, I have asked for a collaborative meeting. I have taken other 13

appropriate steps in order for a plan to be implemented. In over 3 years we have been denied a meeting, concerns denied, and we’ve been labeled many things. I despise tweeting about this yet my daughter & I made the decision a few years ago that it was only option we had 14

we much rather have sat down years ago. So while I hate tweeting our lives we will continue. What is occurring is wrong. It’s unethical & care is dangerous. I understand that many will assume they is a ‘reason’ my daughter is being treated how she is but this treatment is NOT 15

ok. There is a huge issue in #healthcare, not only are #physicians & medical professionals being harmed, #patients & #caregivers are as well & BOTH should be acknowledged & unacceptable. It’s not ok to acknowledge one & not the other. And as much as I hate it, as much as my 16

daughter hates it we no longer will remain silent. There are basic rights that #patients should not be denied & it happens & it’s not ok to look away or rationalize that we (or they) did something to deserve such behaviors. I refuse to look away from #harm done to 17

#physicians, #medical professionals, #patients or #caregivers. No rationalization is ok. Full 🛑.