I’m not quite sure when it started. All I can say is, the harshest symptoms hit me like a truck and quick.
January 2015, my boyfriend and I had headed to a Nike outlet to go shopping for gym clothes. That’s when I noticed my lower abdomen was starting to poke out a bit more than it usually ever did. Fortunately for me (or so I thought) at the end of December 2014, I had gotten a gym membership because I decided it was time to start lifting weights and gain some muscle mass.
At the time, I was 88 pounds. Not by choice because God knows I was one of the girls people hated because I could eat anything and not gain a single pound. Myself personally? I hated it. I wanted to not be such a stick. I wanted muscle and I wanted to be strong. I wanted people to stop telling me I’m anorexic. I just wanted to be healthy so people would stop bothering me all the time.
For a couple of months, my lower abdomen slowly kept growing in size, but just the lower section. It was frustrating. I was eating better than I had ever eaten in my entire life and working out more than I ever had in my entire life. I wasn’t going crazy at the gym, but I was being healthy. What the hell could my body possibly not be accepting my new lifestyle for?
School, work, boyfriend = never home. I was never home. I was always studying, working or with my boyfriend who lived in the same city as our school, 25 minutes away. Until July 2015, I had worked where I lived but I got a new job that month so I had to commute 35-40 minutes to my new job.
That was also the same month I started noticing I was beginning to get irritated all the time. I was beyond stressed, exhausted and wanting to sleep. I truly believed it was me being drained from commuting, studying, going to school and keeping up with my relationship all while barely being home that was causing the heightened irritation. But little did I know it would get worse. Much worse.
By October 2015, I had had enough so I decided to start seeing a naturopath. My gut was so much bigger. I was gaining weight. Nothing was working. I had hives constantly, I was sweating all the time and my headaches would never go. I was just over it and exhausted. I needed answers. I needed someone who could help guide me in healing my body because I thought it was just a stress thing.
But again – nothing was working.
Fast forward to February 2016. I had started a food sensitivity diet based on the foods that my blood test flagged as ‘red’, meaning they were not good for me. This diet consisted of eating basically nothing because my body barely enjoyed anything and everything I ate for 3 months was whole food.
I gained 30 pounds in 3 months.
From January 2015 until May 2015, I had gained a total of 67 pounds. Eating well, exercising, meditating and focusing on de-stressing and nothing was reversing my symptoms.
My naturopath concluded that she thought I had PCOS and wanted me on a ton of herbs and tinctures. At that point, I knew if nothing natural was helping me, then whatever was hurting me was beyond focusing on “natural remedies” and I needed the help of an expert. The only thing my family doctor could tell me was “eat better and exercise”. My mom having just had surgery thyroid cancer was not going to stand for that. She forced him to send me to a specialist. Bless her heart, honestly, because that’s exactly what I needed.
By the end of June 2016, I had met my endocrinologist and at this point, I had gained so much weight around my stomach area and face, that it wasn’t hard for him to be able to guess what I had by meeting me initially. I had what is known as a “moon face”, super red cheeks, a lot of extra facial hair, fat gain around my stomach and a buffalo hump. My arms and legs were normally sized compared to my mid-section.
The night before I had my appointment with him, I did a bunch of research on PCOS and came upon something called “Cushing’s disease” that was either caused by a pituitary or adrenal tumour. I literally chuckled because I was like, “nahhhhh”. No way I had a brain tumour. Funny how my mind went straight to the pituitary tumour and not the adrenal. I didn’t even care.
Within 2-3 minutes of meeting me, he asks, “have you ever considered that you have Cushing’s disease?” The second he finished his question, I knew in my gut that’s what I had. I knew that it was pituitary. I had had an inkling in the back of my mind since I had read briefly about Cushing’s, that it was exactly what I had.
To put it simply (because Cushing’s is a very difficult disease to explain and understand), Cushing’s is a disease caused by either a pituitary or adrenal tumour causing excess secretion of cortisol in the pituitary gland. This wreaks havoc on the endocrine system. Think of the endocrine system as a message system passing a baton off to the next department that needs to do their part: since the pituitary gland is one of the main control systems of the endocrine system, if one hormone is sending the wrong message to the next hormone it’s passing the baton to to keep our system functioning, then the rest of the hormones begin to not do their jobs properly. That’s when the body starts to get out of control.
The next 2 months were tests and an MRI, confirming that I had a 4mm tumour on my pituitary gland. I cried tears of joy having had a diagnosis. I had an answer as to why I lost all my muscle. An answer as to why I was gaining so much body weight in 1 section. An answer to why nothing was helping me. An answer as to why I lost my period, was sweating so much for no reason, forgetting things, unable to concentrate, unable to keep my cool. I had an answer as to why I injured myself doing a light back workout and couldn’t recover.
I had an answer.
I kept getting worse and worse and by surgery morning on January 27th, 2017, I was 188 pound.
In less than 2 years, I had gained 100 pounds.
The most physical symptom that caused people to not recognize me. People who saw me on a weekly basis didn’t recognize me one week to the other. That is how bad Cushing’s disease changes you physically. The part people notice the most.
My muscle atrophy was incredibly terrible. I had no strength to keep myself up that I even struggled to get out of the tub one day, causing me to slip on my left side and bruise all the way up my side and on my upper arm. It took 3 months to heal. I would sweat in -30-degree Celsius weather and be able to be outside in a tank top.
I couldn’t remember things.
My mom told me I kept starting conversations and going silent. I had no idea I was talking. My mom would say, “hello? Are you going to finish your conversation?” and I remember a few times this happening where I’d reply, “finish what conversation?”.
My testosterone levels were through the roof.
I had no estrogen. Because of the testosterone, I had so much hair on the sides of my face and on my chin and neck. My skin was dry and brittle and incredibly thinned out. I had deep, dark purple and red stretch marks all along my arms, calves, thighs and hips.
My stomach was so rock solid that getting out of bed was a nightmare. My feet, knees, elbows, and hands ached. They throbbed, actually. Writing was a chore. Typing on my computer was a chore. Sitting was a chore. Standing was a chore.
I could barely breathe properly.
It was difficult. I was also so big at this point that I was waddling. January 27th, 2017 couldn’t have come faster enough. It’s also gone by quickly being in recovery.
A lot of people believe that Cushing’s recovery is linear, but that is absolutely the furthest from the truth. You feel worse before you get better and although your quality of life does improve compared to when Cushing’s was full-blown, you are never the same health-wise ever again. Ever.
Recovery from Cushing’s is also different for everyone. Some people’s surgeries are a success while others aren’t. Some people need cortisol steroid replacement the rest of their lives, some are off of it in 1.5-2 years and some are off in 2 months. Some people have minimal chronic issues the rest of their lives and some have chronic health issues that keep them from living their lives the rest of their lives. No one can predict what each recovery will be like. Doctors are still trying to understand this hell of a disease and what damage it leaves us with.
Today, I am 17 going on 18 months post-operation on July 27th. I got a little weird before I got better, then I got better but am worsening again. I have dizzy spells, extreme nausea, vomiting at times, body weakness, and exhaustion. I also get chronic headaches that turn into migraines sometimes that turn into nausea.
One day, I can be perfectly fine and the next day, I’m sick for 2 weeks or 2 months straight.
There is no predicting how I’ll be each day which makes it really hard to have a life. It’s hard to make commitments because we have no idea how we’ll feel. It’s scary, the unknown. Especially when you’re so young like me and have barely had time to achieve your goals.
But that can be a story for another time.
All in all, I’ve learned during this disease that your attitude really makes or breaks your experiences. I could’ve chosen to be a bitter young woman and treat everyone horribly for what has happened to me, or I could’ve chosen to use my voice, spread awareness, help others and focus on the good around me.
I chose the latter.
Was it simple? No. Has it gotten easier? No.
My anxiety and depression consume me. It’s worse than it was with the disease before tumour removal and I thought it had reached its peak back then. But life is too short to focus on the bad parts solely. You need to appreciate the beauty in the smallest of things.
If you’re going through your own troubles right now, it’s hard but really try to focus on even the smallest of things that bring you any type of joy.
That was key in my coping during illness and coping post-surgery and until this day. I promise, it’s something you’ll never regret.
Photos below are Before, Morning of Surgery, and After
(1yr, 4 mo Post-op)