Sorry in advance for this long post. I just needed to talk to people who would understand:
I have been alive long enough to have heard many doctors tell me this and that and tell my friends and spouse this and that and tell my parents this and that. And as the years continue and as the latest fad of favorite diagnosis changes and as pharmaceuticals change their stories about the drugs they are pushing I have come to realize that doctors should be listened to only as a consultant. Sort of like a high paid electrician or plumber; a technician who has learned a current piece of knowledge.
It is always important to believe the patient. To never hear that you, the patient, are wrong, hysterical, imagining stuff, a baby, not tough enough, or worse yet , to be told that you have no right to read information for yourself or on the internet, or come to your own conclusions.
I could list wrong diagnoses and terrible physician mistakes and abuses that have led to the death of the patients under their care. I have worked in hospitals all my adult life and am sickened by what I have seen.
However, for some strange reason I still go to doctors, especially when I am frightened, listen, believe, pay my bills and look to them for comfort, explanations, and a wisdom that I long to find in some grown up person that would sooth me and make me feel less afraid. I know this is a fantasy and yet I keep wasting money and anger on this experience.
My husband has what is now called PSP (what it is might change as fads and research change). Remember the old Senility, hardening of the arterioles, senile psychosis diagnoses (if you are young enough). Everyone who HAS PSP has different symptoms..hum? what does that mean...most obviously it means that we have a group of different problems lumped together under a name...that for now seems to have some heuristic function.
I have just come out of hospital with a bill of $5,000 for what has always been severe intermittent back pain. I left the hospital in worse shape than I went in and my husband was in a complete terror thinking that I had died. The doctor I saw (briefly) said I needed back surgery $70,000 but that he wouldn't do it even if I had the money because I was a "baby" and couldn't tolerate any discomfort. We are talking about pain that had me on my knees praying for God to kill me.
I will not go into the whole story of this man's treatment of me, lack of understanding about my husband, and obvious greed. But once again I can only blame myself for looking for help where there is only illusion and expense.
Sorry for the long post but I needed to get this on paper and off my chest. My husband has not recovered for his terror about my death and still thinks I am dead. He feels helpless and frightened. I am in a rage, still in pain, and now in debt.
Thanks you all for listening. I needed to talk,
Jill
Early diagnoses of PSP may be a blessing.
PSPDrugs
He said, "I'm dying today."
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