Cushing's Info

I was diagnosed with Cushing's Disease in 2004 and had 2/3 of my pituitary removed.  This was after 8yrs of going from doctor to doctor and thinking I was going to go crazy.  I was told that I was depressed at the beginning and I knew that wasnt the problem, but not knowing what to do I went on an antidepressant and then continued trying every antidepressant and doctor out there.  It is the worst feeling to know that there is something wrong with you and to be told by several doctors that either you are obese or make you feel like it's in your head.

Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again.  I am now going through what I did 8yrs ago.  My endocrinologist doesn't think that the Cushing's is back because of my tests being borderline.  He told me that he thinks I am obese and I need to have stomach surgery.  I seriously cried for days and told him that I disagreed and I wasn't going to give up.  I have Kaiser and he referred me to the University of Colorado hospital for them to do the testing, which is what they did in 2004 also.  Thank GOD!!!!  The endocrinologist at the University knows what she is doing and is very thorough and agressive. 

So I saw the dr. at the University about 2 months ago and she ordered 3-24hr urine tests and 3 dexamethasone tests.  Here is my problem.  I am scared to death to do the tests for fear they are going to come back saying everything is normal.  In fact, I even asked the dr. if the medicines that I am on could skew the test results and she said possibly.  So, we decided I would go off the meds.  Well.....that is not possible. I honestly cannot get out of bed, I have no energy or motivation and I ache so bad that I have to take advil.  I am caught between a rock and hard spot because I can't get off the meds and I'm so afraid that it is going to cause the tests to be inaccurate but yet I have to function and work.  I work from home, thank God, but that is even very difficult for me.

I am at my whits end, I feel like I have not felt pretty or good for so long that I honestly have thoughts of dying and I know I can't go there because I love my kids so much but I am honestly feeling like this life is not good and I don't have much strength left in me to fight.

I need support in following through with the tests that I need to.  Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don't have the Cushing's back and I will have to live like this the rest of my life.  Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything. 

I'm praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out.

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Robyn will be our guest in BlogTalk Radio on June 15, 2011.