I was 21, 88lbs. I had just gone through a terrible year that begun mid-2013. I was starting a new program at Mohawk College for Advertising and Marketing and I had just joined Arbonne, which I quickly let go of in a couple of months because I was not feeling well.
I met my current boyfriend early October and I was finally finding happiness again. He loves going to the gym, so my newfound love of working out came from him. I always did work outs at home, nothing intense and all body-weight exercises, so beginning to weight lift was exciting. I got a new membership to a gym and actually used it that time around – I was proud.
Throughout the first couple of months of us dating, I noticed I was falling asleep a lot around 8pm. I was getting really tired all the time but I just assumed it was because I was a busy person.
New year with new goals that I was sure I would crush. My boyfriend and I went to the Nike Outlet to get some clothes and I felt like I was getting fat for my body size. It’s funny because when I look back at the picture below, you can’t tell I was growing a bump at the bottom of my abdomen but I knew it was there and I thought I looked disgusting.
That’s funny, right? Oh, how I would kill to be this “disgusting” again. Since you can’t really see my face, here is what I looked like that time in 2015.
I was pissed, everyone. I was working out, eating well, and my gut wouldn’t stop growing – W. T. F.
I promised myself that I would kick my ass into gear and that I would lose that stubborn belly fat! I WAS GOING TO LOOK HOT!!
In January, I had switched to the Marketing focused program at school, so that caused me to have to be in school for 5 semesters straight which meant summer school.
By this time, I was always irritated, moody, tired, angry, stressed out and on edge. My anxiety was through the roof. I didn’t understand why I was getting so big but chalked it up to stress. I wasn’t sleeping well, either. I had also gained stretch marks on the back of my legs at this point and my mom and I just said it’s because I was gaining muscle. I mean, I was. My legs and bum were super muscular but the rest of me wasn’t. It was strange.
I thought it was also the stress from my job at the time and July was a transition period into a new job. My old job was at Tim Horton’s and I had gone from a size 2 pant to a size 8 pant in 3 months because of my gut.
My gut was growing and so was my booty, so I was happy. I mean, I had a cute butt at one point – my fitness game was great besides the fact I got super irritated sweating but it seemed like working out was paying off. Look at it!
I had a lot of acne on my chest at this point. My face was getting bigger, I had cystic acne like crazy. My digestion was horrid. I was eating well and going to the gym. I was working on weekends and going to school 5 days a week. I was never home. Again, I pointed everything towards stress but decided to go see a naturopath to help me more personally with diet or seeing why I was getting so much acne. Note the facial changes below: although I looked healthier in the second photo, I was getting much bigger… I just used the scarf to hide most of my double chin.
Nothing was working. I was about 150lbs by this time. That’s about a 62lb weight gain in ONE YEAR. I decided to take a food sensitivity test and when I got the results, I did the diet strictly for 3 months along with working out and I gained close to 30lbs!!!! That May, my mom and I went to my family doctor and asked to be sent to a specialist. My mom had thyroid cancer so she wanted to ensure that I wasn’t having any issues with my thyroid as well.
I was graduating from school. This was when I realized how bad my body had gotten. Back in April, my memory was already horrid, I barely passed my exams to finish school – my brain fog was incredibly intense.
My acne was terrible, I had a lot of facial hair, super red cheeks. My face looked swollen, I was always hot. Working out injured me more than helped me and no clothes was fitting – I’d outgrow new clothes within a couple of DAYS.
*You’ll notice during a certain point in time, I have close no 0 photos. I hated taking photos of myself – I didn’t know who I was*
When I met my endocrinologist mid June, I had done all my research for PCOS (Polycystic Ovarian Syndrome), ready to beat it and lose all the weight, acne and facial hair. Within a couple of minuets of meeting me, he asked me if I had ever considered Cushing’s Disease. Cushing’s and PCOS have very similar symptoms so throughout my research of PCOS, I stumbled upon Cushing’s Disease a couple of times. I thought to myself that there was no way I had a brain tumour because they’re “rare”, but deep down in my gut, I felt like I knew I had that.
I did quite a few tests in a short span of time. Blood tests, 24 hour urine test, and a dexamethasone suppression test. All my tests ruled out PCOS so my endocrinologist kept testing further with more dexamethasone tests. My cortisol was through the roof. You’re supposed to be below 250 (and whatever the measurement is, I’m not sure) and I was at 690 when I first got tested. After the 3rd set of those tests, he had me sent in for a rushed MRI which was done very early August and by August 15th, 2016, I had my answer.
I had a 4mm tumour on the outside of my pituitary gland.
I cried tears of joy. People apologized for my diagnosis and I honestly told them they were being silly – I had a reason for the stress, agitation, irritability, memory loss, brain fog, weight gain, hair growth on my face and belly, hair loss on my head, the loss of my period, the weakness in my legs, the loss of the muscle I had gained, my lack of sleep and the horrible digestion (or lack thereof) that I was having.
I was referred to a surgeon in Toronto and by mid-October, I met her and her team. This was the beginning of my journey towards finding a way to get better and I’ll admit, it wasn’t an easy one but never once did my surgeon beat around the bush or lie to me. She was always honest and so was her team. They were amazing with me from day 1.
By September 2016, this is what I looked like.
No, I was not angry – okay, I was – but that was just the way my face sat. Imagine having NO control over how you look no matter what you did to improve your health. My hair was wild no matter what I did, but I was losing a lot of it (I had a lot of hair to begin with so it was hard for others to tell that I had lost a lot), the acne was out of control, my face was puffing and I had very red cheeks. That was all people could see. Cushing’s is so much more than the physical that others see but this is the reality of what others notice but internally, we are dealing with hell on earth. This disease is slowly killing us each day in the most painful way possible.
It took me a while to have surgery. I got a call in mid-January 2017 that I would be having surgery January 27th. Those 2 weeks I had to prep were busy. I finished working, I had to get financial situations sorted out, run errands and make sure everything that needed to be done for at least 3 months, was planned ahead. Was I nervous? Yes. I had very many times where I thought I wouldn’t be able to go through with it but I reminded myself it was the ONLY way out of this hell hole and that I would be fine – I’d sleep and wake up “instantly”.
January 27, 2017.
Was I nervous? Yes. Was I nervous about being so nervous that I would fight to go inside? Yes. I am someone who gets really severe panic attacks so I was worried I would have a moment where I’d be screaming, refusing to go inside. I was nervous but so much more calm than I expected. I’m not majorly religious, but I prayed for weeks. Actually, I prayed a lot during this whole thing. I think meditating, positive thinking and prayers helped me calm myself and the fact that my surgeon and her team were so amazing, I knew I was in good hands so I didn’t panic. Morning of the surgery, I was 188lbs. That’s a 100lb gain from where I was 2 years prior. My cortisol levels were also in the 800’s. The following photos were taken the morning of my surgery.
My Cushing’s was very aggressive. From September 2016-January 2017, the changes were immense. I was waddling like a penguin, it was difficult to breathe, I had hard palpitations, high stress, I was insulin resistant. In the middle of speaking, I would forget that I was speaking and just stop. I couldn’t remember things – they would come back to me after a few days or weeks. I had no muscle. My stomach stuck out so far – I’m a 5’2″ girl and XL clothing didn’t fit me. I would sweat in -30 degree celsius weather. I was going to the bathroom every 10 minuets to pee. I hadn’t had my period since June 2016. I could barely write with a pen or type on my computer – the pain from using my arms in any capacity was horrible. After work, my legs and feet would throb without stopping. I could get home on a Friday and they would not stop throbbing the whole weekend. The pain in my legs and feet was intense.
I used to love to take baths with salts to help calm my muscles down but I had to stop because I couldn’t get out. My stomach was as hard as a rock, really stuck out and I was too weak. My arms couldn’t pull me up. My legs couldn’t either. Because of the excess cortisol, a majority of the weight gained was in my mid-section. Because my muscle all turned to fat, my arms got a little more chunky and so did my legs, but nothing like my face and mid-section. Because of that mid-section weight gain, my legs could barely handle carrying me around.
As I sit here writing this all, it is July 9th, 2017. I am 5 months post-op. Recovery is a whole other hell for Cushing’s survivors – it’s not linear that is for sure. But I am doing so amazing. I am proud of myself for how far I’ve come.