A few weeks ago, I had the opportunity to speak at Harvard Medical School about my disease. My endocrinologist does a lecture on pituitary disease, and I went with another patient of hers and talked about Cushing's Disease, and my adrenalectomy.
Of course, I was about to cry before I even opened my mouth to say anything, but that's pretty normal for me these days (stupid hormones). I talked about my dreams 10 years ago before I knew I had Cushing's, how I had planned to be sitting in their seats, in medical school or even finished with school by now. I went through my whole story, from seeing 5 different endocrinologists, to testing for more than 5 years, to how it was not one of those endocrinologists but my gynecologist who really diagnosed me with a pituitary disease. I talked about getting so many parking tickets because my legs were too weak to walk up the hill to class, and how it's so hard to be a good friend when you are sick, and that was probably the hardest part, not having all these important people around me when things got tough. Of course, there are those precious few that stuck by me through all of it, but not without challenges.
They asked me to compare how I feel now, to before Cushing's, and that's something I don't know how to answer. I don't remember before Cushing's, I don't know if there is a before Cushing's. Maybe I've had Cushing's since the day I was born, maybe since I was 12 or 13 years old, I don't know what feeling "normal" is. We talked about being without steroids for months, and how no one can believe that I am still alive. I also gave them some insight on how different my life is than most people my age. I can only work part time, a good year was only being hospitalized twice, and by hospitalized, I mean being admitted. Emergency room visits are still a normal, regular 4-5x a year occurrence.
Oh, did I mention that even my endocrinologist, who has been with me for 5 years, was crying by the time I finished? Even she learned things she didn't know before!
I think it was an unbelievable experience, and hopefully will be able to do it again in the years to come.