Meet Lindsay. This is her Story.

Let me start out by introducing myself.

My name is Lindsay Coulter and I’m a wedding and portrait photographer based out of Waterloo.

I’ve always been a happy person. Each report card ever sent home to my parents used words like bubbly, energetic, joyful. I felt grateful for the cushy, “normal” life I had been blessed with. Sure, I worked hard, but I was also very aware that I was lucky. I had two parents who loved me, had completed university, gotten a cat, a dog and had a fiance who loved me. Honestly, everything was falling in to place like some kind of hollywood script. I’m sure I had normal bumps in the road just like anyone else, but really my life was good. I’m sure you’re wondering when the shoe drops, because as my naive self learned, it always does. 

In December of 2016 my whole world fell apart. My best friend of 25 years, Kristen, passed away suddenly. I had just gotten home from a Christmas trip to New York with my fiance Taylor, and opened my laptop to a message from a friend of hers in Australia (where she was living) looking for Kristen’s parent’s phone number. My heart sank. I knew that it wasn’t going to be good news. I sat on the couch frozen, unable to type.

Finally a few moments without breathing later I responded and asked her to just tell me what was going on. Kristen and I were like sisters; we had grown up in each other’s homes, we met at daycare when we were less than 2 years old, and had been practically inseparable ever since. Although it was selfish, I just wanted to know she was okay, so I could go on with giving her their number. Eventually they connected, but I knew whatever it was I didn't want to find out over the phone. So Taylor and I drove straight to her parents house.

When we got there, they told us she had died.

That was it.

The world froze.

I went through the many phases of grief - denial, anger, erratic behaviour, sadness, anxiety, extreme fear of losing anyone else, guilt… the books about grieving really had it right.

But what the books about grieving don’t really tell you is how to come out on the other side of it.

I was incredibly grateful for my self-employment in those next few weeks, so I could take some time to process. To be totally honest, I went through a cycle of sleeping, crying, and drinking for a few weeks. It was really strange, it didn’t matter how much I drank, I still felt sober. It was almost like nothing was going to cut through the reality of this loss. 

Luckily for my health and my relationships, that phase only lasted a few weeks. Once I stopped that cycle and realized I needed to continue working and getting up each day, I became numb. I wasn’t happy, I didn’t smile. The only jokes I could make were morbid, and I’m fairly certain most of my friends and family thought I had totally lost my mind. How I kept my business going in 2016, while trying to plan a wedding is nothing short of a miracle. I have no doubt that Kristen was asking the universe to help me out during that time. 

After about 3 months of just merely existing, I decided to go see my doctor. I told her “I don’t have time to feel like this, I need to get back to normal”. (As if anyone has time for this). My doctor gave me a couple of prescriptions, and also referred me to a counsellor. I was happy to have medication to take for when panic attacks took over, but I knew I needed to speak to someone in order to fully move on.

When a 25 year old dies, they don’t leave a neat and tidy package.

They leave a path of pain and destruction and 5 million unanswered questions.

I knew a pill wasn’t going to help. 

So I went to a counsellor. I asked her if I would get myself back. I wanted to know if the happy person I once was would ever come back, to which her answer was “Maybe, maybe not. This might just be your new reality”. *Note, if you’re a counsellor dealing with someone with severe depression, telling someone there’s maybe no way out of this, is definitely not the answer. At our next appointment, she told me I probably just needed to take more naps and drink more water. She obviously hadn’t listened when I told her I was sleeping 8+ hours a day. So I got up in the middle of our session, told her I needed to go for lunch, and never went back.

It was a weird time.

Finally, the light came.

Near the end of 2016 I had agreed to trade services with a personal trainer in the area. She was pregnant with her second daughter, and wanted maternity photos. She knew I had a wedding coming up and wanted to get in shape, so it was the perfect fit. Her baby arrived in May of 2017, and we started training together a few weeks after. She brought Baby T to all of my workouts for the first few months, and her little face was all I needed on the hardest of days. For the first time in 5 months, I was moving. I was getting out of bed at 7, I was putting on clean clothes, and I was seeing progress. Not just physically, but emotionally. 

I worked through my fears of having a wedding without her by my side, of losing another loved one, or dealing with any other kind of tragedy.

I had no idea that lifting weights and running would be all the therapy I would need.

I had been a yoga instructor throughout university, so I knew there was power in movement, but yoga wasn’t calling to me this time. I needed to feel strong. I needed to believe in my body. I needed to appreciate my health and not take it for granted like I had been. I needed to feel connected to the shell that carried me around- since the trauma of losing Kristen it had felt like a foreign entity.

I listened to my body, and forced my mind to play along.

Alicia and I trained together 2-3 times a week, every week, and we haven’t stopped since. What started as something I wanted to do to look nice in a wedding dress became something I needed to do to be a great partner to my now-husband, a better friend, and effective business owner. My clients needed me to show up to their wedding as the joyful, bubbly, happy person they hired a year and a half before, and I needed that girl back too. 

The idea of not only losing Kristen but losing myself was something I couldn’t manage. I couldn’t control Kristen’s death, but I could fight to get myself back.

And so I did. That was the beginning of finding myself, not the previous version but a newer version of myself. This new version of me still cries almost daily, and misses her girl like crazy. But this new version is also grateful with a new sense of awareness.

Before I was grateful for the life I had, but now I’m grateful having known loss, and having fought through it.

In December Kristen will have been gone for two years, and it still feels like it was just a few months ago. I will not pretend to know the answers to loss or trauma, but I will say that the advice given to me over and over again “one step at a time, one foot in front of the other” is exactly what got me through. 

Meet Catarina. This is her Story.

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)

Meet Ali. This is her Story

As a kid I remember my emotions feeling so big it seemed they couldn’t physically be contained in the room I was in. To me, they were palpable, and taking up space, big and heavy, they surrounded me.

I guess that I have always been like this- feeling in a big, intense way.

While this certainly has its advantages in the pleasant and joyful contexts, when things swing the other way it’s hard to feel something so deep and so painful; especially when it appears from the outside that the circumstance just doesn’t seem to call for it.

As a teen I remember literally, running away from these deep feelings when they became too much. As in, I would actually head out the door in whatever I was wearing and run as far as I could, “away” from the pain I was feeling. Usually, after a few blocks, I couldn’t breathe very well and not being in proper footwear and attire led to extreme discomfort. But for a few minutes, being sweaty and out of breath gave me something else to think about- it released me from whatever pain I was feeling, without actually having to truly confront it and deal with it.

This worked for a while here and there until I experienced a period of pain as an undergrad so deep that I could not run away from it. After a particularly bad week of sleeping all day, a friend dragged me to the gym with her where we participated in a kickboxing class. For the first time in weeks I was actually moving my body and getting the blood flowing. It was tough, I didn’t want to do it, but with each shadow jab I felt a little lighter.

By the end of the class I remember feeling good, so good, that I cried on the way back to my dorm room.

I just wanted to feel this good more often, but it seemed so impossible. I remember later that day talking to a friend and saying out loud the words I was never able to say before; “I think I’m depressed”.  She encouraged me to seek help, and thankfully I did.

My story does not end there of course. While I had quickly learned that staying active played a key part in getting my life together again as a depressed undergrad, my depression didn’t just go away one day because I decided to work out regularly. In fact, while I continued to remain very active in my early 20s, the next obstacle that was thrown my way was uncontrollable anxiety that felt like it was just handed to me one day, out of the blue.

At first, I was not able to fully recognize that something was not quite right. I began making lists for everything, always worried, terrified, that I would forget something. These lists began to control my life in a way that I couldn’t explain. Some days and even some vacations were spent just making sure things were crossed off, instead of actually living in the moment and enjoying each “item”.

This sense of overwhelm and desire to complete what I felt I “needed” to was all-consuming at times. At first, it was easy to blame it on my perfectionism and Type A personality. But as this spilled into every other area of my life I realized that these feelings of trying to control everything were not normal. It reached a tipping point when I would drive to my internship every morning with butterflies in my stomach and then sit in my car once parked for a good 15 minutes convincing myself to go inside. There was no real “reason” to feel this way and I could not control it. In a sense, my lists were a way I was able to feel control over my life at this time.

I would sweat every time my phone rang, worried that the person calling me was going to tell me a family member had died. I was afraid to get in a car with another driver in fear of getting in an accident.

My fear of the unknown and all possible terrible outcomes sent my head in spirals, I had trouble sleeping and would often feel on the verge of a panic attack when I thought about anything beyond my current task at hand or day. Unfortunately, regular physical activity had taken a backseat to graduate school and juggling two part-time jobs. But one day, I felt the overwhelm and lack of control bubble over and was reminded of my childhood feelings- I could not keep them in the room and I just need to get away from everything. I laced up my shoes and headed outside, telling myself that maybe I  would just feel a little bit better if I went for a run.

It sucked. I was breathless within 3 minutes and sweating through my shirt. I stopped to walk every few minutes and cursed myself for thinking this was a good idea. However, after a few minutes I realized the feeling of panic had subsided.

I probably only ran about 2km that day, but I returned home with a clearer mind and a sense of calm I hadn’t felt in weeks.

A few days later when I started feeling the same way, I laced up my shoes again. I don’t know what came over me, but for some reason I told myself that day that I would train for a 10k race. Over the next few weeks, I started to run regularly when I felt overwhelmed. It wasn’t long before I fell in love with the feeling of getting out there. I fell in love with running the way I fall in love with most things in life- obsessively, completely and all at once.

At first, I loved how it humbled me, I had thought I was fairly athletic and in shape, but running seriously kicked my ass . Over time though, it gave me a sense of control as things became slightly easier. When I laced up my shoes, I knew what to expect. I knew when I would tire and where I would turn around and how far I could do. Eventually, I was able to start pushing myself more and more- conving myself to run 100 more meters when my mind was yelling “STOP!”.

For the first time in my life, I realized I could challenge my thoughts and push beyond them, and, that my thoughts were not always right- I COULD run a little bit further if I wanted to.

After a few months, I found myself in a place where running gave me space to actually work through things. Instead of trying not to die with each painful breath, I was able to fall in to a rhythm, to run and think and recognize my obsessive thoughts as merely thoughts. I was able to be in that moment while correspondingly work through the unpleasant physical feelings it gave me- and I realized how much that related to my anxiety that I dealt with in my day to day life. It was okay to feel unpleasant things, accept them for what they are (temporary) and keep pushing through them.

Running has since become a major part of my life. As soon as I feel myself slipping, I know what I have to do to feel better. That’s not to say it’s easy to just lace up my shoes when I feel my mind take over with negativity and worry. Sometimes it takes everything I have to lace up my shoes and get out the door. It has also helped to have a community to push me and support me and get me out there on the days when I would really rather not. Running has challenged me to push beyond my self-imposed limitations and not let thoughts define me. In running away from myself, I have actually learned to not shy away from myself.

I have learned to come home to my body and my breath and who I am- anxiety and all.

While there is no question that professional help and medication can turn a life around, it is the feeling of pounding concrete that has truly changed me.

It is so easy to look at physical activity as a way to look a certain way, but in reality, it has the power to not only change your body but change how you FEEL. Learning the connection between mind and body has been the most pivotal and important lesson I have learned in my life.

My depression and anxiety are parts of me that I have learned to live with, and physical activity is an important piece of my toolbox that I often reach for when life just seems to be too much. Running is always there for me, steady as can be. One foot in front of the other. Left foot, right foot, breathe in, breathe out and repeat. It pulls me back to the ground when I need it the most.