Cushing’s Disease Anniversary
June fourth is the third anniversary of my second surgery for Cushing’s Disease. This is monumental to me because my team of doctors at Cedar’s Sinai Medical Center’s Pituitary Center (where the surgery was completed) told me that I would be 100% back to normal by my three-year anniversary.
The second surgery, June 4, 2007, removed my entire pituitary gland, along with the tumor. I’m living proof that one can live without a pituitary. But am I back to normal – I like to think so but I know there are deficit areas that remain a bit foggy. Most Cushing’s patients are in their 20′s and 30′s, I was much older than that at the time of my initial diagnosis and subsequent surgeries. Thus, one would expect my recovery to take longer.
Because of this website/blog and written articles, I have received phone calls and E mail from other Cushing’s patients or people who suspect Cushing’s in themselves or a family member. The stories are sad ones and often fill with professionals who will not listen to them or who refuse to do the right testing in order to diagnosis properly. I offer advise but I know how lucky I was to have a doctor who recognized the characteristics of Cushing’s in me right away.
So on the eve of my third anniversary, am I 100% back? No. Physically, I tire easily and take power naps about three times a week. I don’t like loud, crowed places because it makes my head “full.” I can’t listen to more than one person talking at a time and really pay attention, and conversation often tires me out. I lost weight at first but have gained some back. I continue to have a word finding problem at times, especially if I’m tired. Because I’m a speech pathologist, I know how to substitute many words and try to “hide” this language disorder. I don’t plan to overdo too much in any given day ~ if I do, I pay for it the following three or four days. I continue to get those deep, deep chills that only four or five blankets and a nap can cure – but not nearly as often.
BUT, when I compare where I was three years ago, I can only put the palms of my hands together, close my eyes, and thank God for my family, my faith, and my courage to pursue so desparately those things I knew I had to in order to get to where I am today. I’d put me at about 90%.
I’ll leave you with this thought because I like it and it says a great deal about anyone who has dealt with any disease:
“What lies behind us, and what lies before us, are tiny matters compared to what lies within us.”
~Ralph Waldo Emerson
