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We seem to think our story is different because it happened to us. I was diagnosed with Cushing's in September of 1997. I was 26 years old. I believe I'd had it for over 6 years prior to diagnosis. I was gaining weight, had dark purple stretch marks, fatigued, and depressed. Many doctors didn't know what was wrong. I was very active in school, played fast pitch softball and got a scholarship to play at a Junior College in Greenville, South Carolina, so there was no reason for me to be gaining all this weight.
My aunt told me to see an endocrinologist. He knew by looking at me it was Cushing's. I felt horrible, my blood pressure was high, my menstrual cycle had stopped completely, I had hair where I didn't want it on my chin and under my lip, and I hated to look at myself in the mirror. I felt like I did not know that person in the mirror. I felt ugly and fat and very unattractive. I kept away from the world. I wanted to die.
I had my first transsphenoidal surgery at the National Institute of Health in Bethesda, Maryland in February of 1998. The staff, nurses and doctors were all great. After surgery, I felt awful. I went back for a checkup in July and found out I wasn't cured. In March of 1999, I had my second transsphenoidal surgery. Dr. Oldfield did both surgeries. He felt like the first time, there was part of the tumor he didn't see, but this time he saw it had attached itself to the carotid artery and could not be removed. He recommended radiation. I was at NIH for three weeks and was flat on my back for eleven days with a fat graft and two lumbar drains with my second surgery. I went home for two weeks and was readmitted for the six weeks of radiation treatment. I didn't get sick during my radiation like some do.
They told me I would feel worse after treatment, and they were right. I never felt so bad in all my life. They also told me I would need a lot of pills to replace what the pituitary gland controls.
As for the present, April 2001, I have made it back to work full time as a Respiratory Therapist in Orangeburg, South Carolina at the Regional Medical Center. I am still struggling with my weight. I have learned that most Cushing's patients have a very hard time loosing weight. I am praying every day that God will give me the strength and courage to go on. I still get very depressed but it's getting better, Thank God! I'd like to talk to others who know the feelings associated with such a long recovery period. |
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