And It's About Time There Was Some Support For Cushing's!
I'm finding y'all a bit late -- four years after my "cure"! I went through several years of unexplainable problems, which included a heart attack, before I was able to get treatment. My husband had contacted OHSU Pituitary Unit on my behalf and Dr. Bill Ludlam called me to tell me my case was neither unique nor hopeless. One interesting aspect of my case is a genetic link -- my maternal grandfather died of complications relating to acromegaly.
Today, I get along fairly well, although normal has a new definition. I still tire easily under stress and am facing surgery to remove cataracts, a problem that has been accelerated by my long dependence on cortical steroids (no sign of a functioning pituitary). I work out vigorously several times a week and stay on a pretty strict schedule for sleeping, eating, and otherwise living.
One big problem for me was a deterioration in my ability to read, concentrate, and remember things. I am largely over this now because I spent the last couple of years teaching English at a local Christian high school. I mention this because it is one of the big reasons I felt so "old" when I was in the midst of my disease. Perhaps some of you recent patients wonder if you are on the verge of Alzheimer's? If so, hope is on the horizon. There is indeed life after Cushing's.
One of my goals and dreams now that I have walked through the horrors of this disease is to write a book for young people on the pituitary gland and ways it can malfunction. I would like to approach the topic through stories of people who are, like me, survivors. If you'd like to talk with me about your own experience, I would love to talk with you!
After my own diagnosis, I spent a lot of time thinking about my grandfather and what he had to endure. It's clear the doctors knew what was wrong, since acromegaly is clearly indicated on his death certificate (he died in 1943). My mom remembers that he got weak, and that he always asked Granny to make the biscuits he loved because his large hands got in the way of most everything he tried to do. She says he never complained, but I wonder, was he frightened? I sure was. Endocrine disease is scary. I hope to make it less scary by raising the level of general knowledge.
Rene' Hinds, "Mrskittycat"
