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.
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.