Feeling of Violation and Old Journal Entries...

So I can't seem to recover from feelings of violation. They are feelings similar to that of a date rape victim. I trusted this doctor who did my surgery and he promised me he fixed me and was a 100 percent sure he got it all. He told me there was no way he could have not gotten it as he did a "million dollar" job on me (just last week). Yet I keep getting more and more evidence to the contrary...even the pathologist agrees and said they only got the sample of skin and blood from my nose! I’m getting all hospital reports as additional evidence.

I feel so dumb for trusting him. And then I feel so angry. I'm just so damn tired of fighting this thing and everyone that touches this disease. It is bad enough I have to fight the disease but having to fight the medical community on top of it all…it is a bit much! Luckily and I hate to say this I finally found a doc who knows what she is doing. She said the neurosurgeon was very upset that she would even question his ability in the surgery and the results. He’s not sending her the medical files on me. He’s a coward because he can’t even call his patient and explain or apologize or suck it up and admit he screwed up. Maybe he has something to hide? Well not for long because I will take this as far as I can to make sure I get answers and if someone has to pay...they will. I'll make it my mission to make sure that another patient doesn't have to go through the mental and emotional abuse that I have suffered. Not to mention additional physical problems caused by prolonging my disease and the surgical complications. He told me he was 100 percent sure I was "cured." He told my mother! HE LIED! I wish I would have taped him. I think I will invest in a tape recorder so I can catch all these docs on tape.

I understand mistakes and tend to be very forgiving since I have made many of my own mistakes in life. We all have and finally I’m mature enough to admit them. But to hide something this major, to lie about it and let a patient continue to get worse because you can not acknowledge a mistake is unforgivable. Someone will pay. No patient should have their lives so completely violated. I know I am not the only one but I sure as hell won't let them forget me.

I was reading my journal entries from when I stayed in the hospital each time. (I keep a personal journal as well as this since so thoughts aren't meant for everyone in the world.) Anyway, I knew four days after surgery that I would need a second one and that something was wrong...I wrote it! I knew all along something was drastically wrong with me yet no one would do the tests I wanted. And they even went so far as to have me do a psych evaluation....which I passed with flying colors! I think they knew which is why they wouldn't do the tests to confirm or deny my suspicions. They knew right then. They knew as I lay there almost going into a sodium induced coma! They knew as I cried in pain and stayed awake at night because I was so ill and wired from what I suspect was cortisol.

I have notes from all the docs in my journal...I know who they are and what they did and they will pay. I will not let another Cushing's patient walk into their office and be treated the way I was or any patient for that matter.

With that said I am planning to enroll in college again part-time while I am still on disability. I'll only be able to take a class at a time but I need to do something. Granted I hope my medical condition lasts long enough for me to do this but I need to help others with rare diseases. I need to help them win the battles that we all go through, even if we only win them in our hearts and minds. Anyway, I'm hoping to go back for social work or psychology so that I can take my communications and health background to help others like me. To give something back, something positive, from all this ugliness.

Something good has to come of all this since you have to do your best in life and I refuse to be positioned as the "bad guy" or as someone who let this stay a negative influence on their life. If I can take this horrible experience and what I have learned to help others; than I will have achieved something in my life.

And they better watch out for the day I'm better...because I do plan to fight like hell! People will regret their actions and others will hopefully not have to struggle through them. They think I am a fighter when I am sick; just wait till I have the health and energy to back myself!

Okay, off to relax a bit…and hopefully sleep which once again is not easy to come by.

PS - I do still believe there are some good docs out there...just too few who are concerned about people with rare diseases. And most that are interested in the rare diseases are in the labs trying to find genetic clues and treatments. I have worked with some of the most amazing medical professionals in my career and they deserve the credit for doing a great job.