Seeking a CURE for my Cushings Disease

Well, I had Gastric Bypass surgery this past Oct. 23, 2009 because all of my doctors told me that I was FAT and that Cushings Disease is too RARE... 3 weeks later, I was finally diagnosed with that RARE disease...

So, after many more tests, a MRI, 2 CT Scans, the scary IPSS procedure (that was undeniable), I had Transsphenoidal Pituitary Surgery at UAB's Kirklin Clinic with Dr. Kristen Riley on April 7, 2010. Sad to report, it was unsuccessful.

As of yesterday, I have changed doctors. Dr. Bill Ludlam is my new Endocrinologist. He is a Cushings/Pituitary Disease Expert. He practices at Swedish Hospital in Seattle, WA...all the way across the country.

I am tentatively scheduled for a week of intense testing beginning June 28th. Then, if all goes as expected, Dr. Mayberg will perform my second pituitary surgery the following Tuesday, July 6th...Hopefully, this will give me the 'cure' that I have been begging/waiting for.

Am I in Charge of my Diagnosis?

I turned in my 24 hour cortisol free urine test 8 days ago. I still have not had any correspondence about my results... Do I call the Kirklin Clinic Doctor or do I call my General Doctor or do they contact me with the results? I already have been made to feel like I am a hypochondriac... begging for this test. I feel like I have been trying to PROVE that I have Cushings Syndrome or something other than I have just gotten huge and disgusting... I wonder if I have heard nothing about the results then it must mean that I am fine. My results MUST mean that it has come back that I am totally healthy. If the test did show that something wasn't right, then, certainly, they (someone) would have called immediately to let me know that I am not perfectly healthy. Well, I guess I will know eventually. I think I will call my Doctor today and see if they can find out the results... I am just rambling I know... I think I am starting to lose faith that something really is wrong with me. I am just FAT and need to get on with my life!

Monday August 10, 2009

Today is the day I have chosen to take my 1st 24 hour cortisol free urine test.
I wonder if this test will come back in the "normal" range like all the blood work has.
Meaning:
Once again, Lisa, there is NOTHING WRONG with you!
You are just FAT!
SO: Get out of your bed, quit feeling sorry for yourself, deal with the 80 lb. weight gain in 4 years, the hard as a rock (7 month pregnant looking) stomach, the deepest depression ever, the black hairs all over your red face and fat neck and chest, the ugly 'buffalo hump' on the back of your neck, the hot flashes and profuse sweating, the chronic pain/muscle weakness/joint soreness, the exhaustion and fatigue, the memory loss, the weird texture of my once straight/ thick/healthy hair that is now wiry and thin, the strangest moles/skin tags/rash that continue to develop, the on again/off again blurry vision, the uncontrollable edema in my ankles and calves, the total lack of sex drive, list just goes on and on...
I wonder when I will have the results of this test?
They say "Cushing's Syndrome" is so rare... only 13 people/one million...
So, maybe not Cushing's, what then?