My name is Maryann and I am a Cushing’s victim. At the age of forty-four, I noticed something was going on with my body, and like most other Cushing’s people, I had no idea why my body and mind were changing. In 1993, I had some joint pain, but really didn’t think much of it. I went to an internist with a specialty in arthritis. He gave me some pills, did blood work and found nothing. I asked him why I had a hump in my neck and his answer was, “You’re Fat!” I could have died. At 4’11’’ and 115lbs, I always tried to maintain a decent weight but in about 4 weeks I went to 145lbs. A second internist got the same results-nothing.

I fractured my foot but didn’t know why, and things started to go crazy. I couldn’t make any decisions, couldn’t walk without shoes, my bones hurt, there was the hump, and a distorted body. The facial hair was just awful, I had to wax my whole face. My ankles would swell, hands had lumps, and my blood pressure was so high I was close to having a stroke. My face was like a balloon. I didn’t recognize myself in a mirror. I would get out of bed and brush the hair off my pillow, then brush my skin off the bed, unreal. I decided to try an orthopedic doctor. He too, found nothing, said that it must be sciatica and to stay in bed for 6 weeks. Nothing was getting better and I was walking with a walker. A doctor said I should see a shrink that I just wasn’t dealing with things and must be depressed. Yes, I was depressed – my body and mind were changing and I didn’t know why! I remember reading in one of the CSRF newsletters a poem that said, “I look in the mirror, but I don’t know who’s looking back.” This the worst feeling you could ever have. Getting dressed in front of your husband is a no – no, you go in the closet or in the dark.

Another set of doctors gave me an MRI and found three tumors on my adrenal gland but said, “No problem – they’re very small” and that I should let them go until they get bigger. Things continued to get worse and so did the depression. Then one day I saw a friend, (a doctor’s wife) who said, “you need to see an endocrinologist!” Dr. Cobin saw me and knew I had Cushing’s. This was the first time she saved my life. She sent me to New York to see Dr. Perkiliedes, who said that I needed surgery. By then I had broken my ribs fifteen times and my thumb. He had to wait because it had also affected my heart. In 1998, I had my surgery. I had to take a lot of pre-tests because they didn’t really know as much as they do now. I was the first laparoscopic adrenal surgery at Mt. Sinai. Students were all over and it was documented on film. They removed the two tumors and said, “It could come back.” I always had it on my mind- it felt lake a cancer victim, but I was up and dancing the following day.

Thanks to my family, especially my husband (who took the brunt of me being a really nasty person. My daughter was frightened and thought I hated her) and with lots of prayers and God, I made it!!

I was fine for a few years, finally had all the weight off and BANG, I felt all the symptoms all over again. I really flipped out. At that point, my son told me one of his friends looked like me, she was puffy and afflicted by this horrible ordeal. We met and comforted each other, even call each other “cushie”. Along with another gal I know very well who had a pituitary tumor, we all get together and share our stories. I guess in one way I am glad to have had Cushing’s to meet and reunite with these girls. God works in mysterious ways.

My second bout with Cushing’s was almost worse because I knew what was coming. This was the second time Dr. Cobin save my life. I was five years older and it hit me hard. In 2001, I had my second surgery. Once again, my family and friends supported and helped me and with God’s help, I made it again.

I still have some problems and I must admit, as do my other cushie friends. We all still feel like we still have a lot of Cushing’s in us. I’m on prednisone and other medications for the rest of my life. I’m wearing a medical alert bracelet, just in case of an accident, cold or stress. Every time I look down, it’s a reminder of what I have and have to live with forever. I guess the keyword is live – and I’m trying!! God Bless, Good Luck to all and never, ever give up!!