Awareness Story - Catarina
The photo on the left shows me in late 2014 and the middle photo is me at my graduation June 2016. Around October/November 2014, I began to notice that in the early evenings, I was a lot more tired than I usually had been. I shrugged it off because I assumed it had to do with the fact that I was working and going to school full time. From September 2014-April 2016, I went to school non-stop without more than a 2-week break. I was commuting 35 minutes to school, 40ish minutes to work and going to the gym between working and school. I was handling it well enough until July 2015. I had been putting on weight that was muscle and I was beginning to look healthy. I was underweight for about 5-6 years of my life and couldn’t put any weight on for the life of me. But from July-December 2015, it just wouldn’t stop. I was around 130 lbs by July and by Christmas, I was about 140lbs. I was eating healthy and going to the gym. That winter, I also started getting intense hives daily. I was itchy all the time and incredibly hot. I began to notice I was getting dizzy once in a while and feeling weak. I also couldn’t socialize like I once used to. Going out after school or work was simply not an option – I had no mental or physical strength to endure anything. Just the thought of having to shower after work or school was a chore. The thought – not even actually doing it. My anxiety and depression worsened. I began to get more and more irritated by everyone and everything for absolutely no reason and it wouldn’t stop.
October 2015 is when I began to see my naturopath. I wanted to have a mixture of western medicine/natural medicine to help me with my weight/mood/energy. I started doing what my naturopath suggested I do and I did lose 2.8% body fat in 8 days but that quickly stopped. We thought it was just stress from school, work and a lack of sleep mixed with my love for sugar. By January 2016, I was hovering around 155 pounds. February I received results of a food sensitivity test because both my doctors thought I had PCOS – I was highly sensitive to so many foods and I cut them out of my diet for 3 months. I even cut out unnatural sugar completely (I still ate fruit), but I continued to gain 30lbs and was told that I should automatically begin losing weight on my new diet without even working out. That’s when I had enough and got a referral to see an endocrinologist in May. I met my endo that month and he questioned the diagnosis of PCOS. He asked me if I had heard of Cushing’s Disease before and I said yes, but hoped it wasn’t that because it sounds like hell. Something in my gut told me I had it, though. He asked me about my skin (I was indeed ashy and have had red/purple stretch marks since early 2015 that haven’t left and until this day, keep appearing in new places), my vision hasn’t been the same. I was staying injured longer. He sent me for tests that help begin deciphering between PCOS and Cushing’s and by my 2nd appointment with him, he ruled out PCOS. I did a suppression test and my cortisol did nothing but get higher. He ordered another round of the suppression test with a higher dosage and a 24-hr urine test. My cortisol levels were through the roof and even higher on the suppression test with that higher dosage than the 1st time. He said the levels of my ACTH matched the levels of someone with a brain tumour in their pituitary gland. I went pale and he reassured me if it was that, it would be removed through my nose. He said that my levels pointed towards a tumour that would be around 3-4mm.
He automatically sent a rush for an MRI and I got one within a week and a bit. August 3rd I had my MRI and by August 15th he called me with my diagnosis – a 4mm tumour. He was spot on since the day he met me. This is not the case for a majority of Cushing’s patients. I am very, very lucky to have had a diagnosis this easily. I am thankful everyday that we got to the bottom of this so quickly. I have not met my surgeon yet though which is a bit frustrating, but I will by October 19th. I am praying I have surgery before the end of 2016. Today, my symptoms have drastically gotten worse. So incredibly quickly. I can barely walk anymore; my ankles are incredibly weak. My back never stops aching whether I sit or stand. Standing I am dizzy. Headaches are non-stop now. My vision is bad – it is a major struggle to drive because of that and the pain I get in my legs. I have no muscle at all. I cannot think straight anymore and everything overwhelms me. When I speak, I forget why I’m speaking and I cannot understand simple things. The list goes on and on. Although my life is a struggle, it is not the worst struggle in the world. I am very lucky for this diagnosis. It isn’t easy to go through this and I know recovery will not be simple but I am so thankful I have a chance at recovery and getting most of my life back. I believe I was dealt this hand to become a better person, appreciate my body and my life more. Not that I didn’t before, but I didn’t appreciate myself enough. I believe I was also dealt this to realize what is important in life. I refuse to look only at the negatives of this disease – I’m using it as a learning experience, too.