@Oldspartan is correct. There are very few “good” doctors. Of the approximately 17 doctors on my regular care team and the hundreds of doctors I have seen, I can easily say less than 5 of my regular doctors are truly good and I’ve had less than a dozen other good doctors (be it emergency care or otherwise)
I’m truly thankful for my neurologist and my new PCP/GP, and I’m slowly gaining some new doctors that at least will do their job.
Unfortunately the major learning hospital, that takes on all the rare cases and is also the main trauma hospital has now refused to take me on as a patient. Ever. Even after my specialist begging them to take me.
My cardiologist fired me as a patient for being too complex, leaving me without care.
Another major hospital discharged me post-unexplained coma when my blood pressure was critically low and I was unstable, stating that I was too complex. “If she goes into another coma, stick her in the car and drive her to another state because maybe someone there will want to deal with her”
I have dozens more stories like these. Left unconscious and refused testing and treatment with my partner being told “she’s faking for attention” ….how do you fake a critically low blood pressure? Being told I was crazy for two years when my abdominal muscles completely ripped off from my pelvis. Being told I was worthless if I was sick and forced to do dangerous exercises that permanently damaged my body.
This has been an ongoing issue my whole life. I have no trust left for the medical system. And my work with advocating for other patients hasn’t helped. I’ve met so many dear friends that I’ve grown to love through my work with rare disease, and the amount of friends who have died, and who I am watching die in front of my eyes because of purposeful neglect is truly heartbreaking.
As I discussed in a recent podcast episode with a fellow PRC survivor, the questions so frequently asked to us is “why don’t you sue” -and it isn’t ever that simple. It was simple for the case of Maya Kowalski (the Take Care of Maya documentary on Netflix is incredible, she lives with one of my conditions)and it’s not that simple for any of the survivors of abusive pediatric pain programs, or really any malpractice suit unless it is so severe. It really lends to the helpless feeling.
Yes maybe it could be done, but in comparison what has happened to me is so minor, it’s hardly worth the paperwork when all of your energy must go to surviving the next day
I’m truly thankful for my neurologist and my new PCP/GP, and I’m slowly gaining some new doctors that at least will do their job.
Unfortunately the major learning hospital, that takes on all the rare cases and is also the main trauma hospital has now refused to take me on as a patient. Ever. Even after my specialist begging them to take me.
My cardiologist fired me as a patient for being too complex, leaving me without care.
Another major hospital discharged me post-unexplained coma when my blood pressure was critically low and I was unstable, stating that I was too complex. “If she goes into another coma, stick her in the car and drive her to another state because maybe someone there will want to deal with her”
I have dozens more stories like these. Left unconscious and refused testing and treatment with my partner being told “she’s faking for attention” ….how do you fake a critically low blood pressure? Being told I was crazy for two years when my abdominal muscles completely ripped off from my pelvis. Being told I was worthless if I was sick and forced to do dangerous exercises that permanently damaged my body.
This has been an ongoing issue my whole life. I have no trust left for the medical system. And my work with advocating for other patients hasn’t helped. I’ve met so many dear friends that I’ve grown to love through my work with rare disease, and the amount of friends who have died, and who I am watching die in front of my eyes because of purposeful neglect is truly heartbreaking.
As I discussed in a recent podcast episode with a fellow PRC survivor, the questions so frequently asked to us is “why don’t you sue” -and it isn’t ever that simple. It was simple for the case of Maya Kowalski (the Take Care of Maya documentary on Netflix is incredible, she lives with one of my conditions)and it’s not that simple for any of the survivors of abusive pediatric pain programs, or really any malpractice suit unless it is so severe. It really lends to the helpless feeling.
Yes maybe it could be done, but in comparison what has happened to me is so minor, it’s hardly worth the paperwork when all of your energy must go to surviving the next day
