![]() |
![]() |
![]()
I received an issue of The Cushing's Newsletter in spring of 1997 after being diagnosed with Cushing's syndrome in April of 1997. It was very helpful then to know that I was not alone, and it was reassuring to read letters by others which could have been written by me! Now that I have some perspective on my illness and have had an almost complete recovery, I'd like to share my story.
I had the classic evolving symptoms for about three years, starting at age 26: puffy face and neck, easy bruising, weight gain in my upper body, weakening leg and back muscles, transparent skin, insomnia, etc. I had always been very healthy and in shape. I am a vegetarian and eat well. As my symptoms evolved, I thought I was just getting older, out of shape and gaining a little weight. It grew more embarrassing - people I didn't see very often didn't recognize me. I tried to lose weight and to exercise more but I couldn't get rid of the fat on my face or stomach.
I had been an actress and had become a decent dancer before all this started, but I found myself less interested in performing. I still did creative things, but I realize now that I had a steady fall in self-confidence because I didn't feel attractive. Only my mother kept looking at my face and saying "something's wrong. This isn't you." She pushed me to get thyroid tests, but I was fine. Last spring, my ankles and feet got extremely swollen. I had recently gone on the Pill to regulate my period, which had grown irregular over the past few years, and thought the swelling was a side effect. I went to the gynecologist who also happens to know something about endocrinology, and he said the swelling was not related to the Pill and noticed that I had very high blood pressure. He asked about the big bruises on my shins and my transparent skin. He suggested it could be related to Lupus or a cortisol problem and sent me for tests. Within a week, I was diagnosed with Cushing's.
Testing showed a tumor on my adrenal gland. I had a very successful surgery by an excellent surgeon, Dr. Antonio Alfonso, and am grateful for the excellent care I received from my endocrinologist, Dr. Edmund Giegerich, both of the Long Island College Hospital in Brooklyn, NY.
When I was finally diagnosed, it was a real lesson in paying attention. I've always known intellectually the burden we feel in our culture to be thin and attractive. Women especially feel shame about gaining weight. The frightening thing is that those who care about us think they're protecting our feelings by not saying anything. Who wants to be told they look fat?
I had a good muscular recovery from my surgery but experienced some melancholy and loss of appetite from taking steroids. My husband was very supportive and helped me get through my bouts of depression, which I was experiencing for the first time in my life. At the end of the summer I had a big decision to make. I had already deferred graduate school for a year, and was afraid that if I didn't go in the Fall, I might never go. I had already left my job. I knew I wasn't physically or emotionally fit to go but I knew I didn't want to sit around the house feeling depressed. It also meant moving to another city and living with my sister while my husband stayed in New York.
I decided to give it a try. The first 6 weeks were extremely difficult. I woke up every morning feeling tired and queasy, scared and overwhelmed. I had to force myself to eat. It was nice to lose weight, but when I couldn't eat, it freaked me out and I would get more depressed. An older friend of mine who was very healthy and had been HIV positive for over 10 years recommended St. John's Wort to me. He took it because he couldn't afford not to feel positive.
I was getting desperate and I really didn't want to get involved with prescription anti-depressants, so I gave it a shot. Within a few days I felt a little better and within the usual three to four weeks I felt a hundred times better. I felt centered, like myself, for the first time in years. I regained my appetite and felt happier and more optimistic. I knew that even if I had to stay on the steroids for a long time, that it would be manageable.
This helped me dive into my graduate program and for the first time since surgery, I felt I could really concentrate, be creative, and be interested in new ideas. I remember reading the article on coping by Dr. Fava in your spring newsletter, where he encouraged patients recovering from Cushing's to resume former activities when possible so as to not sit at home brooding and feeling hopeless. As hard as it was to leave my home and start school 3 l/2 months after surgery, I know that pouring myself into something was immensely helpful to my physical and emotional healing. It helped show me that I could still do what I love to do.
During my recovery, whenever I felt my worst, I remembered that there are a lot of people out there suffering more difficult illnesses or treatments, and I felt fortunate. I turned 30 in November and didn't have any of the angst that my friends have felt because I was so grateful to be alive and 95% healthy. My family has many friends around the world who had prayed for me, and I had made it through. We all had a lot to be grateful for at Thanksgiving.
I never really fell into the abyss of wondering "why me?" but I have tried to figure out what the message was. One was to slow down and let go of certain things. Listen to myself and to others. I told one friend that my experience with illness and depression gave me an understanding and sympathy for others who are ill or depressed which I hadn't had before, and this was an important part of my growth as a person.
After going through an identity crisis, feeling like I had been invaded and left with a shell to figure out who I am, I am glad to feel like I've come back down to Earth and have my feet firmly on the ground in my own shoes with new soles!!
I am happy to report that I have lost 25 pounds, I am continuing to get stronger and I'm in the process of successfully tapering off my hydorcortisone. If anyone needs encouragement, feel free to contact me. |
|
comment on this page
email this page
print friendly
