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I am going to use that until February, where we are going to look into different things if the pain isn't smaller. They are going to check my lung capacity, pain school, hypnosis, psychologist, and make sure that i don't develop a fair of eating.
I am starting with the psychologist already i January because i have post traumatic stress disorder because of the local hospitals treatment of me.think that you can have nightmare because they were so mean to you?? we have mailed Vestre Viken HF about what is going on, and that it is irresponsible and unworthy. i hope they don't treat other people that have a unusual disease.
They didn't belive that i had pain, they belived it was just psychological, but as my doctor at the national hospital said is; it not psychological pain, but you can use you're psyche to better deal with the pain :) They will also look at the botox, because its not the best treatment longterm, because the effect will be smaller, the more you take this treatment.
We also talked about if botox is not a treatment for the future, the botox i get is experimental, because they inject it into my entire esophagus (you can get a sleeping medicine so you don't need to be awake during the procedure.)
Then they will try to find drugs or treatments in other countries that have more knowledge about this illness, and thats a big relief, but if what i have read on the internett is true, then there is not much different drugs and treatments in other countries. Maybe we are to few with so severe pain that they don't use money on it.
But it could be that there is some doctor sitting in a small office in a basement, who are researching this topic.
Thats what really matter with the health care system, if the doctors or nurse don't belive you, its a terrifying situation to be in.
You can try a lot of different drugs and treatments if you're doctors belive you, because its the only thing you need to have: Trust
One thing i have though about is how the doctors talk to you. If they are arrogant,condescending,have made up there mind about you before they have meet you. Then you cant really work together, and the patient will get a worse treatment, and maybe be misdiagnose. Then you will not be getting the treatment that you should have.
We need not to be scared to tell our doctors what we feel. Doctors need to be able to get constructive criticism, and NOT want to help a person because they said you could think twice about you're languages, or why you don't help a person, when its obvious that the person is in big pains??
It still baffles me that some doctors, especially new ones who has chosen a specialty, and feels like they need to impress the more experienced doctors. They should try to impress the PATIENT not the doctors.
The one thing i have learned is that surgeons cant talk to the patients with dignity. They should all be locked up in the operating room, and never be in contact with a patient who is awake!
