Carmelle’s Story

By Carmelle Melanie

In 1998, at the age of 20, I should have been proud of myself. I had succeeded, despite the odds, to get myself off the streets and away from bad people, rent an apartment, find a job, a boyfriend, and start college. And I had done it all on my own.

 

Instead I felt lousy. Really really lousy. I had no strength for anything. My memory didn’t work properly and my sight tended to “jump”. I got out of breath from the smallest effort, and I just couldn’t concentrate on anything.

My body had changed too. I was really overweight, with a red face, buffalo hump, facial hair and bright purple marks all over my body. I would sweat all of the time. I didn’t recognize my face in the mirror. I didn’t even recognize my own smell.

I realized I was dying.

My close friend at the time, Rena, said she had looked up my symptoms and decided I had Cushing’s. She read out loud from the encyclopedia all about Cushing’s and we both laughed. It seemed absurd; Cushing’s sounded like a fatal disease, and I hadn’t yet realized I was ill.

 

Over a year later I finally went to see an endocrinologist. I was given a long list of medical tests to do. I was in and out of hospital. I stopped going to college and work. The diagnosis was Cushing’s disease, which is a rare and life-threatening disease, caused by a tumor which releases lethal quantities of a hormone called cortisol into the body.

 

The proper diagnosis took months, in which time the symptoms became much worse. My whole body ached. People wanted to hug me but I couldn’t take the pain it caused. There were days I didn’t really eat because it was too much effort to prepare or buy food. Showering was hard. I couldn’t reach my feet anymore. I couldn’t sleep, but I couldn’t stay fully awake either. I was in a perpetual state of confusion.

 

There was only one surgeon in the whole country that performed endoscopic transsphenoidal surgery. He tried to extort me and asked for 20 thousand shekels to speed up the queue. (That’s about $5100.) People with Cushing’s don’t care about anything anymore, can’t even think properly. So I refused him the money. (Also because I didn’t have such a sum.)

After six months on the waiting list I finally got a date for the surgery. At the age of 22, on the 27th of November 2000, I had surgery to remove the tumor from my pituitary gland. Which is a fancy way of saying that I had brain surgery. A few days later I was discharged to my empty rented apartment to fend for myself.

Only three weeks later I returned to work. I had no choice because I was out of money. If I didn’t work I would be back on the streets. Because I was never able to properly rest and regain strength, recovery time was extended significantly.

One year after surgery I started college again. I still wasn’t feeling totally better, but I was up for the fight. Two years after surgery I got married, to the same boyfriend who had been with me throughout the whole illness.

 

It took over two years post-surgery before I stopped taking medicine and started feeling like my old self again. My body will never return to what it was. And neither will my brain. But at least I don’t have Cushing’s anymore.