Growing up, I had always been a small kid so when I hit 100 pounds my senior year of high school I had a party. I had a legitimate party, with a cake, friends, family, everything. I figured ‘better late than never’ I’m finally coming into my womanhood! Because of this, the increased weight gain didn’t become alarming or even noticeable until I came home from college one weekend in September. My family took one look at me and began asking questions. At this point my face was starting to round out into the well-known moon shape and my period had disappeared. I was naive and shrugged it off. The thought that something unusual was happening never crossed my mind. I went back to school without a care.
Shortly after my visit home my symptoms became ignited by some imaginary switch. I started losing my hair but yet experiencing facial hair growth. Forty extra pounds found its way around my stomach and my back was constantly on fire. I developed diabetes, slept 14 to 18 hours a day and facial acne appeared. I started taking pictures of the deep purple scar-like striae that everyday seemed to snake their way lower andlower down my legs. My mind was cloudy and distant while my emotions swung like a pendulum. I was losing my muscle and my bones were weakening at a rapid pace.
Halfway through the semester I started falling on the stairs as I no longer had the strength to support myself. I will never forget one time when my roommate and I were going up the stairs to our room. She hopped up the steps as I hesitated, looking upwards. I knew I was going to struggle so I told her I’d catch up. As she left my view, I burst into tears and sat at the bottom of the stairwell. While crying, I slowly made my way as I crawled up three flights on all fours.
Another moment that sticks out is when I was making the three hour drive home for a doctor’s appointment. Halfway into the trip I fell asleep at the wheel and was jerked awake by the rumble strips. That was one of the most real moments of my life and from that trip forward I took a nap at a rest stop every time I had to make that three hour journey. Those are two of only a few distinct memories I have of being sick at school. It was a complete whirlwind and my timeline seems to all blend together.
My parents had been asking questions not only to me but to friends and family while I was away. So on my second trip home I went to see my pediatrician. As experienced by many other Cushing’s patients, he suggested polycystic ovarian syndrome (PCOS) as a cause of my symptoms. My tests came back normal and my parents asked about Cushing’s. A family-friend who was a nurse suggested we inquire about it. The doctor said my blood pressure was normal and “there is no way you have Cushing’s, it’s just too rare.” After some back and forth conversation he reluctantly agreed to the testing. I had the blood tests, dexamethasone suppression test, 24 hr urine, and salivary cortisol’s done. After a few weekend trips home my results confirmed “high levels and abnormalities” as was stated on our home answering machine.
I was then referred to endocrinologist Dr. Stephen Hammes at Strong Memorial Hospital at the University of Rochester in New York. As I walked in the door he simply stated “If I saw you at McDonalds I would tell you to get tested for Cushing’s.” The MRI soon after revealed a small tumor sitting on my pituitary gland. I had never been so relieved in my entire life. The worst part is not having any answers and finally I had one. There was the source for all of this, and the possibility of getting back to the person I used to be was the greatest feeling. Because of the speed at which my symptoms were progressing my surgery was scheduled immediately.
In my eyes post-surgery is when the real battle began. The recovery process is so slow and mentally exhausting, some days were almost unbearable. The support of family and friends is so important and there is no way I would have gotten through those first few months without them. I wanted to feel like myself again so badly but my body and mind weren’t ready. I was constantly trying to force wean myself off the prednisone, which just didn’t work.
In March I went to live with my grandparents in Florida for a few months and it ended up being one of the best decisions I ever made. The weather and company I had on a daily basis lifted me tremendously. I am and will forever be so grateful for the time I spent with them. For eight months post-surgery my life consisted of three things: medication, physical therapy and self-reflection. Finally around September 2010 it started to pay off as I began to feel like myself again. It’s now been over five years since surgery, and as much as I’d like to say I’m at 100%, I know I am not. Physically most everything went back to normal and I no longer have diabetes but the damage done to some of my bones was considerable and I can still feel the weakness in my ankles and knees. When I see a flight of stairs I can’t help but cringe at the thought. This is all okay with me though because it’s something I know I can work on. Overall this experience was life-changing and I live life so much harder now because of it.
The statistic is something like ’10 in every million’ people are diagnosed with Cushing’s and I would never have imagined that I would be one of those 10. Now that I’m here, I want to make sure I do my part. Since recovery I have been able to work with hospitals and universities to spread awareness and have spoken with patients all across the World from London, to Israel, to Australia. Having a support system is crucial and we are so lucky to have the CSRF as a platform that enables us to communicate, inform and support one another. I am proud to be a part of this community.
I would love to hear from others.
Newsletter: Spring, 2015