Here I am. Here is me. On the left, that was me in 1998. On the right, that is me just a few weeks ago.
Yikes, what kind of nasty disease does such a horrible thing to you? Can you imagine thinking you still look like the left image and catching yourself in the mirror once or twice a day, SURPRISE!?!
Ok, so what is Cushing's Disease?
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Many people suffer the symptoms of Cushing's syndrome because they take glucocorticoid hormones such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation.
Others develop Cushing's syndrome because of overproduction of cortisol by the body. Normally, the production of cortisol follows a precise chain of events. First, the hypothalamus, a part of the brain which is about the size of a small sugar cube, sends corticotropin releasing hormone (CRH) to the pituitary gland. CRH causes the pituitary to secrete ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands. When the adrenals, which are located just above the kidneys, receive the ACTH, they respond by releasing cortisol into the bloodstream.
What are the symptoms of Cushing's Disease?
Symptoms vary, but most people have upper body obesity, rounded face, increased fat around the neck, and thinning arms and legs. Children tend to be obese with slowed growth rates.
Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.
Most people have severe fatigue, weak muscles, high blood pressure and high blood sugar. Irritability, anxiety and depression are common.
Women usually have excess hair growth on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop. Men have decreased fertility with diminished or absent desire for sex.
My first symptoms started in childhood. My weight fluctuated for no reason, to the point that I did not know what I looked like. From day to day my face bloated and thinned out. It was enough to drive a young girl crazy. I used to have dreams where my body would expand and contract; like a balloon being blown up with the air let out, repeatedly. I had tons of symptoms, but our family doctor blew them off and convinced my parents that I was a chronic complainer. lol.
In junior high every other girl had long since started their period. I hadn't. By tenth grade it started to bother me. In the summer before 10th grade I started getting deep purple stretchmarks. They ran down my hips to my thighs, across the sides of my breasts that had just barely grown. I didn't dare say anything to anyone about it. I used to sneak into my mother's room and use her precious bottle of pure cocoa butter on them, praying that they would go away.
That is how my Cushing's Disease started, twenty years ago. It wasn't until last year that a pituitary tumor was found during a Dynamic MRI at Cedars-Sinai. On July 31st this year, Portland's OHSU found a pituitary tumor and and congential cyst in the center of my pituitary. A second reading of my films showed two tumors and the cyst. I fear a third opinion. ;)
Last night my Los Angeles endocrinologist/specialist offered surgery for the second time. Last year he offered up surgery and I missed the boat. I've been kicking myself ever since then. I'm crazy excited today and I am seeing the light at the end of this long, long tunnel. I need to keep this journal. I need to keep my head on straight to guide me through surgery and recovery. Someday I just might be well for the first time in my life and I have to know where I came from to appreciate it.