How do I start my story about my journey with Cushing’s? In May 2011, I had a severe anxiety attack, and that’s what I consider “the day it all started.” Hindsight tells me that I had symptoms for years before but they were not severe enough or were attributed to something else. The anxiety attack was pivotal because I had never had one before. I am usually very calm, but I was beside myself with fear that day.
Let’s rewind to October 2010, my 40th birthday. Everything seemed fine, but friends kept telling me that things would go downhill now that I was 40. I would start to fall apart, they’d say with a laugh. I did not realize how right they were, but it wasn’t from age.
I started to have trouble sleeping. I was working 16-hour days between 2 jobs so I assumed it was from being overworked. And I was never a good sleeper anyway! Then the night sweats started. I decided the thermostat was set too high and my flannel sheets were too hot.
In January 2011, I started exercising to get in shape for my nephew’s graduation. I didn’t want to look old and out of shape in the pictures. I became a bit obsessive about it, exercising in the morning and the afternoon if possible, 7 days a week. I was constantly sore but blamed it on over-exercising and a lack of rest.
Next came the stomach issues. My grandmother used to say I had a “cast iron stomach” and could eat anything, but suddenly everything bothered me. I thought I was getting too much acid in my diet.
The hair on my face? It was because I was 40. The head cloud? It was from working so much and being so tired. Did I mention I was cranky? Mean is a better word. It was a complete 180 from my normal personality. Again, I attributed it to lack of sleep.
It was easy to rationalize each symptom individually. But after my menstrual cycle stopped, I decided to see the doctor. I had never missed a cycle and was convinced something was wrong. I also had a sense of overwhelming dread. I thought I wouldn’t reach my next birthday.
I went to my primary care physician, who said, “You need to calm down and not work so much. You are 40 and your blood pressure is out of control.” He gave me medicine for blood pressure and told me to relax.
A few days later, I was napping (because I can’t sleep at night) and woke up and had trouble seeing out of my right eye. I had a full-blown anxiety attack. I told my doctor that I could feel something on the inside of my skull behind my eye. Weird, but I really could feel pressure. He set me up with a neural ophthalmologist who saw nothing behind my eye. I just need glasses because I’m 40 now.
Everyone was right. Once I turned 40, things really did fall apart. What was scary is that I’m an identical twin and she was FINE! What was wrong with me?
I turned to the Internet, my best friend and worst enemy. After entering my symptoms on WebMD, I narrowed it down to a brain tumor, lung cancer or Cushing’s disease. I remember reading the list of Cushing’s symptoms. I turned to my co-worker and said, “I have Cushing’s; I just know it.” She laughed and said I was crazy. I looked “normal” on the outside and I couldn’t articulate what was happening inside. I started to think I was going crazy.
But I knew something wasn’t right. I felt trapped in my own body. I kept demanding tests and was persistent that something was wrong. My blood pressure was getting worse and I was also on pills for acid reflux and anxiety. I went to the doctor once a week for blood pressure checks. I suggested Cushing’s to my doctor, who said, “Don’t be silly; it’s too rare.”
After one visit, my doctor finally noticed a “hump” on my back and asked if I had this before. He scheduled an appointment with an endocrinologist the very next day. HALLELUJAH! That little hump was what made him finally take me serious about Cushing’s.
The next day I met with the best endocrinologist in the world, Dr. Rachael Fawcett. She ran the dexamethasone suppression tests, the urine collection tests, blood tests, and ordered an MRI. The MRI showed a small tumor on my pituitary gland that was pressing on my optic nerve. (I KNEW IT!) Together, the MRI and other tests allowed her to diagnose me with Cushing’s. It was August 18, 2011. I cried happy tears.
Dr. Fawcett set me up with the best neurosurgeon in the world, Dr. Edward Laws at Brigham and Women’s Hospital. We scheduled my transsphenoidal surgery for August 30, 2011 – the best day of my life. I was terrified of surgery, but it was the best feeling in the world to finally know there was a reason for the way I felt and that the surgery could possibly fix me.
The surgery went great and I was on the road to recovery – a long and painful recovery. I have never felt so fatigued and sore in my life. I wondered if it is how a boxer feels after going 12 rounds in the ring? My family, friends and co-workers were tremendous during the testing and recovery phase. I am grateful to all the people that supported me through this ordeal. Dr. Fawcett and Dr. Laws and all the staff at the Brigham and Women’s were phenomenal and I credit them with saving my life!
I was able to wean off ALL medications by June 2012, and now I only need glasses for reading. I am almost 6 years in remission and I feel great. I still worry about a recurrence, but I don’t let it stop me. I take every day as a gift. I encourage anyone who thinks they may have Cushing’s to not take no for an answer. If I had given up after my first “no,” I don’t know where I would be now.
Newsletter: Summer, 2017