Looking back, it is hard to say when my story began, but Cushing’s disease was not part of my vocabulary until September 2020. As the world was quickly shutting down in March of 2020, I finally had my endocrinologist appointment that I anxiously awaited six months to have. 

What I learned early on from patients' experiences with Cushing’s disease is that it often follows an unpredictable path and leaves a person in an immediate reaction response, unaware of the next curveball it might throw their way. Since Cushing’s syndrome is a rare disease, you are left with many unanswered questions and finding the correct treatment becomes a stressful job.

Most of my Cushing’s journey has circled around important milestones in my life. I guess that’s what happens when you start to get sick during your transition into college. This was the time I was supposed to be learning, growing, becoming independent and finding myself. In a way, I suppose all of these things were still a part of my college experience, however, I also had to balance regular doctor’s visits and 24-hour urine samplings all while starting a new life in a new city on a college campus that was 6 hours away from home.

My Cushing’s story started long before I realized it was being written. It is hard to say exactly when I exhibited my first symptom, but looking back at pictures, I began displaying a rounded “Cushing’s face” during my undergraduate studies in the late 1990s. I began dealing with minor anxiety at that time, but that didn’t seem too abnormal given my busy and intense schedule.

It was like finding a needle in a haystack. It was Friday, June 26, 2015, one week after I was discharged from Brigham and Women’s Hospital where I had brain surgery to remove a pituitary tumor. My parents and I were back at the hospital to hear the outcome. I was very optimistic that day. I knew it was a success; it had to be. I hadn’t endured a brain surgery and three days of blood tests for nothing. We were called by the receptionist to one of the exam rooms, where we met Dr. Laws, my neurosurgeon.

I first started experiencing symptoms of Cushing’s Disease at the age of 16. I am now 36, and for the past 20 years I have continued to experience the aftermath of Cushing’s and the treatments I have undergone. I would like to say that Cushing’s has not changed me, but that would be untruthful. While Cushing’s does not define me, it is a big part of who I am and has shaped the last 20 years of my life, for better or worse.

While I don’t know exactly when my Cushing’s journey started, I can honestly say that I have mismanaged stress and trauma in my life going back to my childhood and I believe my body paid the price for that mismanagement. By the time I was 35, a single mother and working in middle corporate management, the effects of the stress were starting to be more apparent. I knew there was something wrong going on inside my body long before it showed physically.

We all experience them; wistful and passing moments of looking back into our lives for those events of awareness and choice that would have so differently shaped the years that came afterwards. Discovering that I had Cushing’s Disease, and coming to accept its meaning in my life, has brought those moments into sharp clarity.

My Cushing’s journey started many years ago. I was born in Russia, in a big city called Voronezh. As a child, I was sick a lot with upper respiratory infections and strep throat. Physically, I was much weaker than other kids my age. I also had different skin problems such as rashes and inflammations which were hard to treat. Also, when I dealt with stressful situations, like difficult exams, I became sick with flu like symptoms.

My story began in February 2015, or so I thought. I woke up one morning with my legs swollen again and it felt like my heart was racing. I made a doctor’s appointment that day. My blood pressure was out of control. My primary care doctor requested some blood work, and when my test results came back, I was able to review them online. There were a few test results that were either a little too high, or a little too low, but nothing significant. I did some research on my own and asked my doctor to request a test to check my cortisol level because I thought I had Cushing’s disease.