Hi My Name Is Mary And I Am A Zebra

Soooooo- After completing numerous tests and logging countless trips to draw gallons of blood, after drinking liquid chalk, thinking I wet myself, having a arm that looks like a drug addict they are no closer to knowing WHY my cushings is back and no idea how they will treat it. Which quite honestly just SUCKS! I have learned some new things along this, my 2nd journey down this twisted path, which is just as bad as the first.
* MRI'S are only as good as the person performing them. Should be concerned that the people who conducted mine could not even get an IV started?
*What is the MEDICAL definition of NORMAL? What is TYPICAL? If I am neither doesn't that alone, make to you curious to investigate further?
* There are 2 different kinds of Cushings Disease. The kind that doctors read about in medical school, the kind that speaks in numbers, levels and terminology and there is the Cushings that I live with every single day. The one that is very real. It is not a number- it is my life.
To be a DOCTOR of a cushings patient means you test and test again. Because the disease is rare, but serious, it is important to carefully exclude other disorders, I get that. What I do not get is why, during this second testing phase, when I have a confirmed diagnoses from one of the leading medical facilities in the world, I am still in limbo.
To be a DOCTOR of a cushings patient means you still have a life. I am not saying a doctor's life is perfect, but it is most certainly better than mine right now.
To be a Cushings PATIENT means your life slowly fades from around you. Your body aches, your head aches, you sleep A LOT you wake up at 3 AM a lot, You talk less and yell more, and you sleep some more.
To be a DOCTOR of a cushings patient you talk in reference to "typical" and "normal". You ask your patients to "wait and see" but if you are the PATIENT you have a difficult time waiting and question what it is you are waiting for. You have a life to live. You can not order back time so the sooner the better. Any doctor who asks me to "wait" is obviously not living my life, paying my medical bills, that doctor is not entertaining my children when all I want to do is sleep in the middle of the afternoon. That doctor is not hiring a nurse, a nanny or a driver while I "wait" and life keeps moving around me.
To be a cushings PATIENT means you have to put on your battle gear for every appointment. You have to defend how you feel. Defend the very disease with which you have already been diagnosed with. You need explain over and over again YOUR "typical and normal" not the MEDICAL version.
I expected this long road. Remember- during 2007 when I was struggling with this EVERY doctor said I could not possibly have this rare disease. When the tumor stained positive for ACTH and they all said I guess you do have it- oops there were no apologies. Why should I expect this time to be any different. After all, remember, I am not typical or normal.
I recently read a story of a woman who is in medical school and trying to get a cushings diagnoses for herself (I wish I could remember her name so I could give her credit.) She said, in part "...There is a saying throughout medical school that they often tout. When you hear hoof beats, think horses, not zebras. The reasoning being is that zebras are rarer than horses therefore to be logical and a good doctor, if something resembling a zebra walks into your office as a doctor you should assume that it is actually just a normal old horse, even if the zebra comes in saying they are a zebra and hands you their drivers license."
So here I am again- in limbo waiting for treatment options, waiting for my life to simply go on. Waiting for MY normal.