Icon Nikon
Gold Member
How right you are NH!
I can not begin to find the words to express what this means to me or how it affects me each any every day.
After my last Brain surgery in Dec, my two insurance plans stopped covering my care. And other than 5 drains (3 in kidney and 2 in lung) being surgically inserted, a severe antibiotic reaction when meds were changed without informing me, and my heart stopping again, I saw only nurses, for the hospital had written me off. So for the past two months I saw no doctors, except during emergencies, and had no tx or recovery plan. I was not receiving any care except antibiotics.
I even, in my mostly paralyzed state, requested that my room lights be turned off in silent protest of the hopelessly dark place they had abandoned me to die in. I also desperately used the side rails to pull out one of my kidney drain tubes so that the doctors would HAVE TO respond. But all they did was send in a PA to take a cursory look at entrance/exit location. And well, after all that, I too gave up on me.
However, AKJ never would let me quit. She validated my tortorous experiences of not being allowed to eat, or receive meds to help with pain, sleep, or take any Klonopin, or get minimal PT to stimulate nerve transmissions, stretch/flex muscles, or maintain range of motion (I did stop speech pathology because no one can understand how I learned language on my own in the first place after 20 years of abuse-related mandated/selective mutism). She managed to cry with me and even to turn my tears into laughter. She came up with ideas which ignited some hope in me. But mostly she just sat with me on the phone, shared herself and her life with me, and helped me to escape my surroundings. What a heavenly friend to be blessed with.
So with her steadfast encouragement, online line spirit lifts like this thread, and online forum fruend support/words of encouragement, I rose up and assertively took the hospitals head on (with a whole lot of research and phone calls). In essence, I found a way for both hospitals to get my stay covered, save face and possibly avoid a lawsuit that I, or whoever survived me, would have easily won. Now it was again in their hands to choose which road they wished to travel - I of course wanted the former since the latter almost certainly assured my own demise.
Anyhow, yesterday I did finally see a doctor (who actually seemed to see me as a person, admitted that I had the "hospital by the balls", and appeared to be genuinely shocked at such gross mistreatment). After that, I had a head/abdominal/back MRI and a Pelvic US to evaluate the brain tumor and brain abscess as well as for the baseball-size mass in my lower back that I had been complaining about for the past month or so (and I rarely ever complain about physical pain, since I have never known one pain-free day in my life). So NOW the mass is being biopsied and I just hope for the best...but no matter what it is it drastically decreases my chances of having the brain surgery I need. And even if it just delays the surgery, that has, by itself, allowed the tumor to grow and the abscesses to continue to cause more permanent damage to my delicate brain tissue and functions.
In any case, I can not imagine myself being able to fight for proper medical care without your collective support. So please know that no matter what happens going forward, you all showed me great human kindness, compassion, understanding, fortitude, and encouragement when I needed it the most.
And although my appreciation is abundant, I still can only offer a heartfelt thank you to each and every one of you!
Humbled Hugs,
Alex
I can not begin to find the words to express what this means to me or how it affects me each any every day.
After my last Brain surgery in Dec, my two insurance plans stopped covering my care. And other than 5 drains (3 in kidney and 2 in lung) being surgically inserted, a severe antibiotic reaction when meds were changed without informing me, and my heart stopping again, I saw only nurses, for the hospital had written me off. So for the past two months I saw no doctors, except during emergencies, and had no tx or recovery plan. I was not receiving any care except antibiotics.
I even, in my mostly paralyzed state, requested that my room lights be turned off in silent protest of the hopelessly dark place they had abandoned me to die in. I also desperately used the side rails to pull out one of my kidney drain tubes so that the doctors would HAVE TO respond. But all they did was send in a PA to take a cursory look at entrance/exit location. And well, after all that, I too gave up on me.
However, AKJ never would let me quit. She validated my tortorous experiences of not being allowed to eat, or receive meds to help with pain, sleep, or take any Klonopin, or get minimal PT to stimulate nerve transmissions, stretch/flex muscles, or maintain range of motion (I did stop speech pathology because no one can understand how I learned language on my own in the first place after 20 years of abuse-related mandated/selective mutism). She managed to cry with me and even to turn my tears into laughter. She came up with ideas which ignited some hope in me. But mostly she just sat with me on the phone, shared herself and her life with me, and helped me to escape my surroundings. What a heavenly friend to be blessed with.
So with her steadfast encouragement, online line spirit lifts like this thread, and online forum fruend support/words of encouragement, I rose up and assertively took the hospitals head on (with a whole lot of research and phone calls). In essence, I found a way for both hospitals to get my stay covered, save face and possibly avoid a lawsuit that I, or whoever survived me, would have easily won. Now it was again in their hands to choose which road they wished to travel - I of course wanted the former since the latter almost certainly assured my own demise.
Anyhow, yesterday I did finally see a doctor (who actually seemed to see me as a person, admitted that I had the "hospital by the balls", and appeared to be genuinely shocked at such gross mistreatment). After that, I had a head/abdominal/back MRI and a Pelvic US to evaluate the brain tumor and brain abscess as well as for the baseball-size mass in my lower back that I had been complaining about for the past month or so (and I rarely ever complain about physical pain, since I have never known one pain-free day in my life). So NOW the mass is being biopsied and I just hope for the best...but no matter what it is it drastically decreases my chances of having the brain surgery I need. And even if it just delays the surgery, that has, by itself, allowed the tumor to grow and the abscesses to continue to cause more permanent damage to my delicate brain tissue and functions.
In any case, I can not imagine myself being able to fight for proper medical care without your collective support. So please know that no matter what happens going forward, you all showed me great human kindness, compassion, understanding, fortitude, and encouragement when I needed it the most.
And although my appreciation is abundant, I still can only offer a heartfelt thank you to each and every one of you!
Humbled Hugs,
Alex
