My experience with health care officials is not good. But is anyone’s? I have become outspoken but what is one to do when you tell friends of your experience or you read other situations and they say “well what did the doctor say?” Did you tell him? Did he read the notes you brought in” Did he give you sufficient time? Did he listen? or why didn't you tell him "well I did but he wasn't listening." All and many more instances can make one feel that they are going crazy.
When I was ten I was diagnosed with a seizure disorder. Grand mal.
My mother was embarrassed by it and took me to any Doctor she could find that would finaly say I did this for attention, it was in my head, or I think she would have even accepted that she herself was imagining it..
I do hope there is no one at this forum that has seizures. But if there is you surely know it is nothing that one could do for attention nor would you want to. It is a horrible experience and one that I have won the battle with. Pretty much. i was determined.
My mother found that special Doctor. My Dad was beside himself with her behavior. I remember being in the office with her and the Doctor when he said this to her. I lived many years of hell because of this. No support only from my Dad. Thank god God makes Dad’s :)
As the years passed I became responsible for me. No one else but me until I had children. So the “ME” was gone and they came first.
My medical was secondary. But I did notice along the years that Doctors did not listen. They did not give you sufficient time in the office. It was easier to hand out pills as a remedy. I would rather the Doctor spend a lot of time with the patient knowing that the next person will get just as good treatment.
My daughter died at the hands of three doctors a nurse and obviously the responsibility of the hospital.
My outlook on them is bad. Questionable to everything they say or suggest. I have learned to take things into my own hands. I have learned that they are not God and I will stop at nothing to politely disagree with them. If I have questions I want them answered. Sometimes I bring the answers with me.
Some Doctors thank me with an additional “ I never knew that” for a response response.
Having a seisure disorder left me to be “tagged” Whatever happened to me was all blamed on seizures. If I were to have kittens it was the seizures fault.
Now here I am with MS and I am hearing that over and over again. MS is confusing and it is something that can make one feel like a hypochondriac, and it is real. But it is not the answer to all of the problems. In fact it could be the reason that LEADS to other problems that a doctor finds the easy way out with. She’s nuts, she’s a hypochondriac, she has too much going on, You did not tell me this. (that’s because you did not listen)
"I have never read this before or never heard about it." "Hmmmmmm that's strange" is another good one. (that does not mean it does not exist)
Can a person imagine having multiple disabilities and most of them silent what responses come from Doctors? “well you sound ok, you look ok, you seem mighty strong and seem to be handling EVERYTHING etc.
If I were to go into every bad experience we would be here for weeks just reading my posts. I will have many as it is.
Doctors please wake up. If you took the Hippocratic (hypocritical) oath please read it again. Read it before you go to work each day. You are no longer the God that people used to make you out to be years ago. We all got smart. As the generations grew the intelligence has become a challenge for you all.
Soon we will be able to go to you and say “Dr. Who, I have this that or the onion rings” and ask for treatment. You will no longer need to play the guessing games. No guessing games and no high malpractice.
Which is another point. If the job was done right, there would be no need for malpractice. These are lives Doctors are playing with. We are not a game. We are not a token on a Parcheesi board. We are walking talking intelligent human beings that deserve better than what we are getting. We are the only ones who know and feel what is going on in our own body.
I personally do not care what tye of health insurance a person has. If you agree to see this person then you best treat them as you would anyone who has a lesser health insurance.
Just recently my ENT of 12 years who went through thick and thin with me with the cancer told me he was not going to be able to see me again. I asked why. His response was that at a meeting, they had decided not to take my type of insurance. Out the door I went.
When I finally did find another ENT two years later he called this first Doctor while I was there and blasted him. I mean blasted. He told him what he did was not leagal and uncaring for a Doctor. Ya da da. I was so proud to now have him for a Doctor.
I keep mentioning blogs and have yet to start one because I do not know where to begin. I still think my best bet is to begin a journal. Multiple journals. One on the Hiadrinitis. One for personal experiences as they happen or as I remember them.
One for health insurance, definitely one on the death of my daughter. and on and on.
Finding a Doctor is not really too bad. It is finding a Doctor who will listen and pay attention. The ones who did are now retired. Older Doctors who knew their work.
Thanks to a wonderful forum we may all be able to receive the support we need.
Quite honestly when I went to the VHL clinic I was treated like a queen and like someone special and who they cared for as a human being. They said i do not havwe it because there were no signs of kidney disease. i had no tests other than an MRI that showed three systs. So I have always been up in the air with that. But the bottom line is these people care.
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