I am rare…

and I am in the middle of my Cushing’s journey as I write to you from my home in Sackville, New Brunswick, Canada. My story is similar to many I have read in that it took years to get a diagnosis. Like others, I was referred to many specialists, each one looking at another single symptom. This began in 2017. I am 68 years old. In 2017, I was in my 39th year as an elementary school music teacher, a profession I loved. I retired in 2019. My breakthrough came because of a chance conversation with my daughter. She had talked to a friend about pituitary gland problems and she mentioned to me that my symptoms sounded the same. This led me to read about Cushing’s Disease. An EENT surgeon was trying to figure out why I had a lump on my neck. Exploratory surgery showed that it was not a lump that could be removed, but just tissue, and I was scheduled for an MRI so he could have a closer look. I requested that the MRI be expanded to include the head and look at the pituitary gland and I asked for bloodwork that would check for cortisol levels. My doctor then referred me to an internal medicine specialist who would look at all the symptoms I was experiencing and connect the dots. The official diagnosis had to wait for a referral to an endocrinologist which took place in 2022, five years after symptoms had appeared.

 I had a first surgery in June of 2022. It was not successful. I am currently waiting for an appointment with a Neurointerventional Surgeon and Interventional Radiologist to determine which side of the gland needs to be targeted in a second surgery.

Every health care worker I have encountered has been exceptionally professional and kind, but it is discouraging to be stuck in a medical system that is in crisis and have long wait times for every next step. Daily life is a struggle with the weight gain (round face, thick neck, buffalo hump and huge abdomen), high blood pressure, shortness of breath, high blood sugar, vertigo, water retention, facial hair growth, thin skin and bruising, fatigue and numbness in feet. Adverse effects to the body are starting to take hold.

However, the support of my family gives me hope that although this disease will shape the rest of my life, there may be some brighter times ahead.