Prior to the onset of Cushing’s, I led a very healthy and active life and was by all accounts sound in mind and body. Early indications were subtle…an increasingly pudgy abdomen and face that wouldn’t trim despite a healthy diet and consistent exercise, and small distinct stretch marks below my navel. I tore a disc, bruised easily and simple wounds would take forever to heal. I retained excess fluid and felt pain in my hips and knees after just one flight of stairs. I had stress fractures in my ribs. I was steadily gaining 5 lbs. a year, mostly in my abdomen. I developed the classic “moon face” and began to notice that my limbs had lost any tone they once had. I have always believed that we are each responsible for our own physical and spiritual well-being. Somehow, on both fronts, I was failing myself. Despite my best efforts, my energy was slipping and my spirit was fading. I tend to ignore discomfort and generally only seek outside help when urged to do so by others. Despite two “bare all” physicals during this period, the diagnosis was that I was just getting older and needed to take better care of myself.
At my request, I was tested for diabetes and thyroid, and had a urology work-up. I was determined not to quit, so I went back for an endocrine work-up, having seen in books many parallels between my symptoms and glandular disorders. My AM cortisol levels were ten times the normal range, my PM levels were equally alarming. In August of 1996 my endocrinologist told me I was a classic Cushing’s patient. I felt a great sense of relief that I had a disease with a name! In one 45 minute meeting, I had been absolved of five years of guilt and self-recrimination. At that point, I gave into Cushing’s and accepted its place in my life.
My pituitary tumor, on the left side, was diagnosed from the Petrosal Sinus Sampling (PSS) and my surgery was in November of last year. At first, my insurance limited me to a surgeon who performed limited transsphenoidals, so we appealed and won!! Seven weeks following surgery I was still washed out until l:00 PM or so. I experienced headaches and had very little appetite as nausea was with me 24 hours a day. Ten weeks after surgery, I felt well enough to begin exercise again. Lap swimming and nautilus weight-training three times a week for the past two months, has given me a solid foundation upon which I can build. It is exciting to shed weight, build strength and feel the energy return.
I don’t hate my General Practitioner for missing the diagnosis, many doctors do. I do fault him, however, for not listening to me…and for ignoring my instincts. He denied himself what could have been his best diagnostic tool.
Of all the afflictions we face as humans, I feel fortunate to have had one that comes with a cure. Ultimately, it is the love and support of friends and family that has made this trying experience bearable.
Newsletter: Spring, 1997