And It's About Time There Was Some Support For Cushing's!
I had a pituitary tumor removed at the Mayo Clinic in Rochester in September of 1992. For several years, i experienced the sad symptoms of Cushing's Disease. I had fractures, bruising, high blood pressure, facial hair, muscle wasting and a pot belly. I was tall about 5'9" and got to 160 lbs before my surgery. But it was concentrated around my middle. The years i suffered were from 1987 until 1992. Also during this time, my mother was living with and dying from Lou Gehrig's Disease. I was having much marital discord also; my husband was no comfort to me; wondered why i could not get a job and manage the home and our young daughter also plus the trips to help with my mother.
I started to read the nursing textbooks at our local college(we were living in western North Dakota at the time) and became convinced i had some sort of adrenal affliction. I t was harder to convince the local doctors to test me. But they finally did. We finally got to Rochester where my cortisol levels were off the charts, but the pit tumor did not show up on the MRI. But the chemical tests indicated it had to be pituitary cushings and the surgery ensued.
I had a hard adjustment after surgery. A few months afterward, just before my first period, i had a bad breakdown. My husband put me in a mental facility for ten days; then we were separated for 4 months. We reunited; life was still difficult but i wanted to rebuild my health and my life with him and my daughter. Then in 1994 i had to return to Rochester to have mitral valve repair. I had had a heart murmur since age 4 and was suffering from severe distress due to the mitral valve disease. I lost a week-end during that surgery, but i felt so great when i finally woke up. I really had a few good years after that surgery.
Until my doctor decided to wean me off the prednisone early in 1998 without doing the ACTH stim test first. I almost died trying to get off the pred. Then he decided i would not. So i am truly Addisonian and will take Prednisone the rest of my life.
I have done some substitute teaching after my pit and heart surgery but retired about 2001 from working outside my home. My husband retired in 2003 from government work and we live on a lake home in rural Minnesota. Our daughter has been very successful, graduated from the Yale School of Architecture and works as an architect iN New Haven, Ct.
My life is all about pacing and trade-offs. I i do this, then i won't be able to do that..... My doctor in Minn is not so defensive with me; more accepting and relaxed. I really have to be my own physician. I take about 6 mg pred daily; more if situations are demanding. Also i use ativan, calcium, b vitamins. No coffee or colas anymore; much tea use herbal and black. the chamomille tea is a great soother for me.
It is hard for family to reconcile to my limitations. My husband excludes me from his trips, etc. He is very hardy and likes very physical activities and he can be scornful of my lack of stamina. I do try to do the holiday meals for groups at times. I pay a price for all extra effort. I do enjoy reading, the computer, word puzzles. Moving to this area has brought alot of loneliness; but most sick people have to endure that too. I am adjusting and do not cry so much about it anymore. I have 3 sisters and my daughter who are a wonderful support system.
All my labs were excellent on my recent physical(of course, they don't check the cortisol levels). I think i am doing what i can to salvage some health. lWeight is good. I do have osteoporosous.
I would like to hear from others who have had Cushings and may now be Addisonian.