I was diagnosed with Cushing’s disease in August 2016, a disease caused by a tumour or excess growth in the pituitary gland, which is located just below the base of the brain. It’s hard to go about my life knowing that others in their 20s are making advances in their career, achieving their goals and making memories with friends, loved ones and family. It’s sometimes hard for me to see that I am not my diagnosis and that I can reach for the stars, too.
In the photo to the left, I am pictured first at the beginning of 2015. In the middle is a photo of me taken in June 2016. I don’t know what’s next for me, hence the question marks. And that uncertainty is scary
A Quarter Young has given me the opportunity to share my journey with Cushing’s disease. I will write three posts about my journey over the span of a few months, including recovery (so yes, this story has a happy ending).
Here is part one:
December 2014. The month and year I decided to kick my butt into gear. To finally start eating a truly healthy diet and add in some exercise with the help of my boyfriend, who knew the gym a lot better than I had. I noticed in October 2014, I was getting tired easily, but I thought that was because I started a new school and program. In January 2015, while shopping at Nike, I tried on clothes when I noticed the bottom of my abdomen was starting to stick out a bit. For five to six years, I had been trying to gain weight, but my body never could. I was crippled with major anxiety and depression from the time I was about 13-years-old. Some days were so bad I could barely stomach a grape. I wasn’t too heavily affected by this little weight gain. I was actually happy and reminded myself I had just started going to the gym and it would go down once I got into a better routine.
During my first semester at school, I decided I wanted to switch my program from advertising and marketing to simply marketing. I ended up starting again from scratch that January, which would lead me to complete five semesters straight without a full break. When July 2015 came, I was really exhausted, irritated all the time, weak and unable to handle the gym or anyone around me. I started a new job on top of everything and that month, school came with group projects. Needless to say, I was beyond what people would describe as overworked and over-stressed.
My gut was getting bigger, I was getting a lot of acne, which I never had before, and my body started experiencing random aches. I also noticed an area on my right arm where my hair was completely gone. It’s nearly 2017 as I write this. That hair still hasn’t grown back.
In early 2015, I was struggling to keep concentration and memory. I couldn’t remember things I knew I knew nor could I retain simple information. I couldn’t grasp concepts no matter what I did, even when it felt they were on the tip of my tongue. I started getting major hives and panic attacks. Work was going downhill, too, even though this was the one place I thought would’ve respected my deteriorating health. I thought my place of work cared about my wellness.
Management ended up following the opposite of company guidelines and I was caught in the middle. The pressure picked up and I found myself getting worse. With trouble at work, dealing with group projects and not taking any days off, I couldn’t seem to keep up with my mental or physical health. The weight kept coming on.
In October 2015, I began seeing a naturopath who helped me understand how the body works and how so many issues are often linked to one source. I tried a whole bunch of things, but again, kept gaining weight. I wasn’t sleeping properly, either. I also added adrenal support and digestion tinctures into the mix, and anything else to help my aching stomach. From February to May 2016, I went on a food sensitivity diet that was supposed to help with my recent diagnosis of Polycystic Ovary Syndrome (PCOS), often caused by a set of symptoms due to elevated “male hormones” in women. However, I ended up gaining 30 pounds. Nothing seemed to be working.
This is when I went back to my family doctor who advised me to eat healthier and exercise. I proceeded to tell him that’s what I had been doing for over a year-and-a-half with a gut that wouldn’t stop growing! I wanted to see a specialist! That’s when he finally sent me to my endocrinologist.
I researched everything possible about PCOS before meeting my endocrinologist. Upon researching, I found out about Cushing’s disease. I kept telling myself there was no way I had a benign brain tumour. Yet, there was something in my gut was telling me my hopes were far from true.
When I met my endocrinologist, he took one look at me and asked me if I had ever considered that I had Cushing’s disease. You know the feeling of your stomach dropping to what feels like the floor when you’re going downhill really fast on a roller coaster? That’s how I felt. Plus nausea.
Next, I underwent multiple tests, and re-tests, which pointed to high cortisol levels in my ACTH (a hormone produced in the pituitary gland, which is in your brain where the tumour would be). My endocrinologist sent in a request for a rushed MRI at the end of July 2016. I had the test the next month. A week-and-a-half later, I was diagnosed with a four-millimetre benign tumour in the pituitary gland.
The diagnosis has, somehow, been blessing. Cushing’s disease is very difficult to diagnose and it can take years before a doctor links the symptoms together. Often times, people with Cushing’s disease go through different tests for different symptoms and illnesses, over and over again, before any connection is made. It’s hard to pinpoint.
I have been seeing a surgeon at Toronto Western since October 2016 and finally got word that I will be having surgery in 2017. Living in my early 20s with goals and dreams I cannot achieve because of Cushing’s disease has been beyond difficult. This disease robs people’s lives and in my case, it’s robbing my youth.
I have hope for my operation and will continue to raise awareness about Cushing’s disease every step of the way. Of course, my focus is to get better, but it’s also to help other people in a situation similar to mine. I hope more people will be as lucky as me!