Wednesday, April 11, 2012


After choosing my surgeons, I decided to post-pone surgery until the end of the summer.  We had been planning a vacation that summer, one we’d been planning for a long time.  Since it would be nearly 4 months until surgery, I opted to take ketoconazole during the summer, a medication that lowers cortisol production.  Taking keto helped, though it took several weeks to get to a therapeutic level.  Since there is not a large population of diagnosed Cushing’s patients, there is not a strong market for disease management.  Since I have cyclic Cushings, taking a medication to lower my cortisol was a bit of a crapshoot.  Dr. Friedman gave me an initial dose, but I still had to tweak it according to how I felt and judged my cortisol levels to be.  If I took keto and my levels were not high, I would put myself at risk for adrenal insufficiency, which is unpleasant in its mild form and can be life threatening if escalates. 

 Our vacation was fabulous beyond words...it had been a dream of mine to travel to Europe and we decided to travel by cruise once there.  We took a 10 day mediterranean cruise on Disney Cruise Line and then spent a couple days in Barcelona afterwards. 

When I booked the trip I did not have full-blown Cushings, and never in my wildest dreams could I have imagined how my health would decline.  It was frustrating to be on my dream vacation, and not be able to keep the pace I envisioned.  One of the most obvious and most common symptoms of Cushings is rapid weight gain, and by the time we took our trip I had gained 50 lbs, and i am only 5' 3 1/2".  It's hard physically to carry the weight, alot of it is in the abdomen which makes me feel pregnant.  It's hard mentally to have confidence and feel good about the way I look, especially around the pool or in front of a camera.  But I refuse to give the disease any power...I swam, I posed for pictures with the princesses and Jack Sparrow and i loved every minute of that trip!  Here is a picture of me with my favorite princess....yes, I"m a disney 'freak' and proud of it ;)


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