Life and Times with No Immune System

Last week was an insane crazy awesome week.

On Thursday night, my mom and I drove up to London Ontario so that, the next day, we could watch my little brother graduate from Ivey at Western University. That night, we arrived in the city around 9:30pm, went for celebratory drinks and dinner, then went back to our hotel and got ready for the next morning.

Friday was a whirlwind with an early morning wakeup for me to hit the hotel gym, followed by a quick shower and change to get to the graduation auditorium. Hours later, (hours….) my bro graduated, and we made our way to our favourite local lunch spot back when we both went to Western. After that, we headed over to my brother’s girlfriend’s parents’ house for a lovely celebratory dinner. In between all this, I was working on my phone, my computer, back on my phone, and so on and so on (there was no way I couldn’t work – I have an important job!)

After getting home after 9pm on Friday, we all woke up the next morning to attend the early morning ceremony for my little cousin’s Bat Mitzvah service! We sat and watched her read her part on the podium and followed it with a lovely luncheon full of family and friends. The next part of the festivities – something my now legal cousins and I had been waiting for, for 12 years, was about to happen - an epic party where we could enjoy each others company while being all fancied up and.. enjoying the open bar. I was so excited.

In between the luncheon and the party, my boyfriend and I went back home to change. That morning, I had been coughing a bit, but felt completely fine and ready to party. Except, well, during the morning, I mistakenly messed up 2 different names of people whom I knew exactly who they were… it caught me off guard and weirded me out a bit, but I figured I was just tired. Best way to get over being tired? Work out. So, the boyfriend and I hit the gym before we showered and put on our fancy clothes.

It wasn’t until getting out of the shower, however, that something didn’t feel right. I felt warm and cold at the same time and my breath seemed to be coming out hot. I’ve had this before, but didn’t want to believe it. Sure enough, after taking my temperature, I had a fever.

But the fever was low.

Low enough that I could still attend the party we had all been waiting to attend for 12 years.

Now, all of us with either Crohn’s, Colitis, Cancer, or any other auto-immune disease know the drill. We get sick, and we get sick often. Sometimes, we get sick so often that we barely have a month of health due to our lack of immune systems. This can be a huge hinderance on our social lives, so, over the years I’ve learned never to let that get in the way… at least, to try.

So I put on my party dress and headed to the event.

And I made sure to snap a pic before I knew I would turn into a ball of shivering sweat on the floor.

Party Dress

“You don’t even look sick!” (They always say that, right?)

Luckily, I managed to.. survive. At least, for most of the night. I spent a lot of time at our table, and managed to eat some of the delicious food presented to me. I also stood and applauded for some of the speeches and spoke to a number of family and friends (always making sure to warn them to stay back from me, lest they catch something!)

As the night wore on, I, unfortunately, started to feel my immune system losing its battle against whatever was attacking me. I started to feel fatigued, cold, and cranky. It already being 12am with most people filtered out, I felt the night had been somewhat of a win. Not a success in any means, but at least I had made it through.

I was disappointed, however, to not be able to dance, laugh, and enjoy the festivities as much as I would have being my 100% self…but when this is your normal, you learn to deal.

The drive home, though, was where it started to really kick in. I was shivering hard and not taking anyone’s crap (as my boyfriend and brother cracked jokes in the cab.) I just wanted to be in pajamas and asleep. I got home, threw my purse, coat, shoes, and dress on the floor, got into the comfiest clothes I own and crawled directly into bed. As I’m told, I passed out within seconds.

Now, in my many years of being sick with every thing you could possible imagine, I’ve been quite used to getting a fever, having it stick around for a day or two, sweating it out, and carrying on with my life the next day. Sunday was supposed to be that day. But Sunday came. And Sunday went. I mean, it wasn’t all that bad – a bit of sweating and aching here, but I still had an appetite and wasn’t coughing too much. Cool – I’ll be back to work tomorrow.

Hah.

Haaaah.

Monday morning, I wake up to a fever of 39.5 c (103f). I basically couldn’t open my eyes, move my limbs, or lift my head. I was a wreck. My mom was so worried (because obviously she was checking in on me), that she insisted I go to the emergency room in case I had pneumonia or something worse.

She literally had to carry me there.

I don’t remember being that unbelievably incapacitated since I was sick with Crohn’s.

This was insane.

After a number of hours in emerg, sitting, waiting, blood work, more waiting, chest xray, being poked, prodded… etc, I was discharged.

The diagnosis?

Dr: “Well, we don’t usually see it this early in the season… but we’re pretty sure you have the Influenza Virus.”

(Obviously I have something that they don’t usually see at this time because my body has very little capacity to fight it off…)

Me: (muttering in my armpit because I’m lying in a ball on a gurney and can’t lift my head) “What do I do?”

Dr: “Nothing, just drink water and sleep. You should be over it in 7-10 days.”

7 to 10 days?

For someone without an immune system, those days could be doubled. Multiplied.

I was just hit with a life sentence.

So here I am.

4 lines scratched on the dresser beside my bed, counting the days. About to scratch in one more.

Today is day 5 with an insane fever and inability to move, to think, to eat, and struggling to type this blog without major grammar and spelling mistakes in my hazy fog (I’m sorry if there are any.)

As much as I’m complaining, this has been an enormous wake-up call. As I mentioned above – I don’t remember ever being as close to this sick as back when I was struggling with my disease. I have had a pretty good run lately where, even when I have been sick, I could get over it in a reasonable amount of time(-ish.) I’ve been lucky.

Many of you, however, are dealing with what I am dealing with now, almost every day – if not every day. Not necessarily with the flu, but with the symptoms of your disease, or from other sicknesses you’ve picked up because your body can’t fight off the germs. You are struggling to walk, to move, to eat, to socialize, to work, and to enjoy life. I am in awe of you.

But you can’t let this stop you.

I went to that party, and even though I didn’t have the best time, I was there and with the people I loved. I’m also still working from home as much as I can because my team needs me and I need to be productive. And I am still writing this blog because I had to pay homage to all of you who deal with this all the time.

So, to my dearest immune system and those of all others:

While we are thankful that you exist and work in our bodies to fight off infection in some capaticity… could you please try a little harder?

Sincerely,

The girl and her friends who ain’t got time for this.

5 Years and a Long Awaited Milestone

5 years ago, today (Oct 3), I was sitting on the floor at the front door of my university apartment with my computer on my lap.

I don’t remember much of that moment, but in a daze of necessary hurry, I dropped everything and opened up my web browser.

I typed in: uncoverostomy.com

It was there that I saw the beginning of the change we were going to see in the world.

5 years ago, today, the term “ostomy” was flipped on its head. The widely recognized stereotypical portrayal of an ostomate was disrupted. The repetitive, negative conversation about ostomy surgery shifted. What was once known as a horrible, life-ruining procedure was no more.

5 years ago, today, Uncover Ostomy began.

Over the past 5 years, we have all – ostomate or not – come together to change the conversation. We started changing our own perceptions, we started discussing our own stories, and we started sharing to those around us. Through the years, we have made a significant change in what “ostomy” means to the world.

Now it’s time for a new partner – one who can help take our experiences, our stories, and our voices to the next level.

Today, at our 5 year mark, I am proud to announce that Coloplast has become an official sponsor of Uncover Ostomy.

All posts related specifically to Coloplast will have this logo.

(PS – Click here to sign up for some free products!)

After years of conversations, months of discussions, and a few weeks of finalizing details, they have joined our efforts in changing the conversation around ostomy surgery.

The best part of all? Coloplast is my brand.

I have been an avid customers of theirs for over 10 years, completely and 100% on my own. Even after trying out many products from other brands, large and small, I have always gone back to Coloplast, year after year after year, for over a decade.

Many of you, whether through a blog post, a Facebook message, or a face-to-face conversation have heard me say time and time again that I cannot talk about the specific ostomy products that I use. This has, thus far, been a calculated decision made by all of those involved in the creation of Uncover Ostomy.

Over 5 years ago, as we began putting together this unprecedented campaign full of half-naked pictures baring it all, we had an idea – an idea that we thought could help us fund the conversation changing effort we were building – we were going to ask for the support from one of “the big 3″ ostomy companies.

The idea was that, whichever of the big three ostomy companies joined us in our efforts of changing the conversation by providing a donation or sponsorship, would have theirs, and only their products, featured in the pictures we were taking for the new campaign.  Ie; I was going to wear their product, talk about their product, and show how to use their product.

Sadly, after tireless efforts, all 3 companies gave a resounding no.

This had never been done before. No one knew what the reaction would be. We had no data to support us. Most of all, no one knew if it would backfire.

We understood.

We also pressed on, undeterred by this unfortunate circumstance, and took pictures using products across the lines of the 3 different ostomy product companies. We built the campaign and have been bootstrapping it, ever since. With very little capital, it’s amazing how far we’ve come.

Despite being turned away, we knew that it wasn’t the end of potential sponsorship from one of the big 3. In an effort to keep the door open, we decided that I was not going to discuss the type of ostomy products that I use. This decision was made so that, just in case, an ostomy company did eventually want to sponsor us, I wouldn’t be ruining the opportunity by blurting out my chosen company.

Uncover Ostomy Product 1
Uncover Ostomy Product 2

 

 

 

 

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But you all wanted to know.

So, so, so many of you have sent messages – to me, to the Facebook page, through the blog comments, through the website contact form, through Twitter – that it just didn’t feel right to remain silent. This is such a major element of how I manage my ostomy that I knew I was going to have to open up.

However, instead of waiting around for any ostomy company to sponsor our campaign, I decided I needed to go after the ostomy company that I wanted to sponsor us - my brand. It had become abundantly clear that I couldn’t just bring in just any ostomy brand and announce that I used their products. It had to be real. It had to be the truth.

So I reached out to the brand that has been my brand for over 10 years.

As you’ve noticed – we rarely ask for money. Instead, we focus on asking you to share the campaign, talk positively about yours or the ostomy of someone you know, and we ask that you share.

The money, however, needs to come from somewhere else.

Coloplast joining on with Uncover Ostomy is the chance we need to take our campaign to the next level. Over the past 5 years, we’ve reached hundreds of thousands of unique visitors online, we’ve had hundreds of thousands of social media impressions, we’ve shared hundred of stories, and changed an unbelievable amount of lives.

We are also bursting at the seams, ready to grow. So far, we’ve had very little financial support to even think of expanding into the opportunities that are waiting for us.

Now, it’s time.

Before you start worrying about what’s going to happen now, let me be very clear – I have not sold out.

Over the course of the many meetings I’ve had with the Coloplast Global, US, and Canadian team members, they made sure that I knew that they didn’t want Uncover Ostomy to change at all. In fact, they were the ones to bring it up to me, before I even had a chance to demand it.

Going forward, I am still heading up all Uncover Ostomy efforts, the campaign focus is unchanged, and I am still going to blog (complain) about anything that is relevant to our mission.

The partnership with Coloplast focuses on something much greater than what it might seem like, on the surface. Yes, they are providing us money so that I can now talk about their products, but this money allows me to finally open up about the products that I really do use. Furthermore, I will not be talking about/blogging/speaking about any products from the Coloplast line that I do not use saying that I do, and I will not be talking about any products that I do not like. I would never do that, and they don’t want me to, either.

In an effort to be fully and completely transparent, I want you to know that any specific Coloplast sponsored post/event/marketing material that we put out will be clearly marked with their logo. You will always know when they are a part of the picture.

So, what does this all mean?

Simply put, partnering with Coloplast means that we will be able to build upon the mission of Uncover Ostomy. It will allow us to expand our community, highlight your personal stories, and tell the world exactly what ostomy surgery is – life saving.

That is just the beginning.

There are so many more ideas that both myself, Uncover Ostomy, and the Coloplast team have already brainstormed that are just waiting for us to do. This is the beginning of a great partnership. A partnership that will help us all.

I chose to work with Coloplast because they are my brand. They chose to work with Uncover Ostomy because they believe in us. 

We are ready to grow. I can see it, I can feel it. It’s time. This milestone is proof of just that.

To the next 5.

Vegan = Forever the Most Annoying Person in a Restaurant

Before you read, please be advised that I am not a doctor, a nutritionist, a nurse, or a fortune teller. I am merely expressing my own views and experiences, hoping to give you a new perspective on your life and your health. Before you make any monumental changes, please consult a physician.

It was about 3 years ago, now, when I decided to try something just for fun. I had just moved to New York City – a new country, a new apartment, a new life. It was scary.

What was scarier than my big move, however, was the fact that my stomach had been bothering me for months prior. I had gone to my gastroenterologist, and to my surprise, was informed that the stomach pain I was experiencing was in no way related to my Crohn’s Disease. He hadn’t the slightest idea why my stomach had been acting up.

Having been given a clean bill of health, supposedly, I made my move to start my life anew.

My new life began in my small 500sqft apartment, shared with a roommate. I knew her, but not well, and I wasn’t very into shmoozing much upon my arrival. I had already been given readings to do for my Master’s program, (the reason for my move,) so I spent a lot of time in my room, studying.

Background noise had always been imperative to my studies, so I immediately turned to Netflix. We had not yet gotten cable TV in our apartment (thank you Time Warner for your superb customer service), so for the first few weeks in NYC, I used the video streaming service as my study partner.

Scrolling through the choices (not as many back in 2011), I settled upon the documentary genre, focused on food. I had always been really into these types of movies (Super Size Me being one of my all-time faves), so I thought the available film list would suit my needs, perfectly.

A few days, and over 7 documentaries later, I was well-versed in the food producing ways of North America – It’s kind of gross… and the grossness got me thinking:

“Why not, just for fun, try being vegan. I mean, isn’t everyone in New York City vegan?”

So, I went grocery shopping and took the plunge, just for fun.

After a week of cutting out all meat, fish, milk, and eggs, the stomach problems I had been plagued with for months had suddenly all disappeared. I felt totally, unequivocally, 100% better.

Well.

Fuck.

Whether my stomach pain was, or wasn’t related to my Crohn’s, I will really never know. What I do know is that I suddenly felt better than I had felt in years.

Now, 3 years later, I am still that girl.

Yes, I am the girl in a restaurant who asks for the server to list me all of the ingredients – to ask the kitchen, if need be – comprised in a meal, to determine if I can eat it. Yes, I am the girl who needs you to ask the chef to prepare a special meal for me at your wedding. And, yes – I am the girl who can’t eat bacon.

how-can-you-tell-if-someones-a-vegan

Yeah, no one likes vegans. All they ever do is ask about food. “What’s in this? What’s in that?” It’s annoying, right?

Ok, first of all, I am not one of those vegans. (Not like there is anything wrong with them…) I mean, I’m not one of those “animals are people too” type vegans who care about animal rights and all that. I wear fur, I have leather purses, and I used to believe that it was ok to eat meat because the animals were already dead and they would be dying in vain if we didn’t eat them.

No, I’m vegan because I don’t believe in how most animal products are processed and filled with chemicals and I don’t want them in my body.  I am vegan because after accidentally trying it out, I realized I couldn’t turn back.

Though, I respect anyone who is vegan, no matter the reason, because it is damn hard.

Either way, - I have always been that girl. 

I never had a choice when it came to food selection- and many of you who suffer with the often debilitating Crohn’s and/or Colitis might know what I’m saying.

The first thing a GI doctor will tell you as soon as you’re diagnosed with Crohn’s or Colitis is that you immediately need to cut out a long list of different foods: nuts, seeds, certain fruits and veggies, popcorn…

Suddenly, you find yourself sifting through restaurant menus trying to find something that doesn’t have one of those things - and asking the server. Then, if you’re lucky, ending up with a meal that isn’t just soup broth.

For me, being sick with Crohn’s was what made it difficult to find food I could eat, more than being vegan ever has been.

No word of a lie, my mom used to PEEL STRAWBERRIES for me because they had seeds I couldn’t eat (a gem, right? love her.) I also used to have to sneak potato chips into a movie theatre because I couldn’t enjoy the buttery movie snack of the ages due to the hard kernels. I was also that girl who had to bring a dietary restriction list with her on school field trips.

I have pretty much always been that girl.

At least now, I can eat.

When my Crohn’s disease was at its climactic peak, I ended up not only cutting out certain foods, but I ended up cutting out all foods.

I went from a semi restricted diet, to a meal replacement shake only diet, to eventually nothing but a permanent IV in my arm as my source of nutrition because my intestines couldn’t handle any food at all.

They say that, after 3 years, your body will tell you whether or not you can handle such a tough diet. I am not going to lie, there have been a few struggles. I had to spend time learning what was considered vegan, researching protein substitutes, and experimenting with adjusting meals to fit my ostomy, (after all, even with an ostomy, I can’t eat every vegetable or every nut all the time.) But it has been worth it. Having had numerous blood tests to prove that my nutrition levels are healthy, having had more energy than I can ever remember having, and barely being sick at all (a random flare up that lasted less than a few months), I know that I made the right choice.

Will I remain this way forever? Maybe. Maybe not. All I know is that I want to eat however way my body needs me to, and right now that means being vegan. I will do anything not to end back in a hospital bed, in pain, with an IV drip in my arm.

So, to all those who think this:

you_dont_win_friends_with_Salad

I’ll save these delicious, vegan meals for myself.

And stay healthy.

For tips and tricks on how I do it, follow me on Instagram, comment on the post below, or write on the Facebook page and I’ll answer any questions you might have!

The Quarter of a Century Birthday.

I’ve made it.

I’ve survived what life has thrown at me.

For 25 years.

Woo.

I used to love birthdays – when I was a small kid. I mean, why wouldn’t you? Cake, presents, clowns, the whole rigamarole. The best.

Then I hated birthdays. Right as school started, no one was around to celebrate. Or they were, but I wasn’t yet assigned a locker for people to decorate… Not that there were many friends to decorate my locker. (That’s what happens when you’re a weird kid, or end up in the hospital for years, or go to a completely new school without social skills to make friends.)

A few years later, birthdays were awesome again. Frosh week, bars, classes hadn’t started – or I could crawl to a class that started at 2pm the next day (praying not to throw up). Everyone was back in town and ready to party. It was great.

But once more, birthdays sucked. My dad died 4 days before my birthday, and for the past 5 years, I hated that time of year. I also broke up with boyfriends around the same time, moved to another city, and then moved back, and didn’t have many people around to soothe the pain of getting older. Not so great.

This year… this year, though, has been a good one.

Even though I woke up, worried about the wrinkles that would suddenly appear on my face once I began rolling down the hill of old age (I checked – I’m safe, for now), it started off great. I rolled over to see the most amazing guy I could ever ask for who wished me a happy birthday before I could barely get my head off the pillow. He surprised me with a beautiful gift, and started my morning off right.

I ran to work, like every normal day, and was greeted with birthday wishes from my whole office, accompanied by special cupcakes just for me (but I shared, don’t worry.)

Then, I spent the evening enjoying some delicious food with my family. What more could you ask for?

I couldn’t get a picture of the family, though, because throughout the day, I kept receiving heartwarming messages from friends, past colleagues, old roommates, cousins, UO supporters, acquaintances, all wishing me a special day – so many, that my phone died. (I’m still getting messages now, as the night goes on, but I plugged it in!)

Maybe it’s maturity? I mean, 25 means you have to be mature, right? Or maybe it’s because, as the years have gone on, and I’ve been through so many things, that birthdays are really just about making it through another year. I mean, making it through 25 years is not something that I thought I could do. I don’t even think my mom, at one point, thought I’d make it this far.

But here I am.

As my dad would say, I’m “over the hill, feeling the wind in my hair as I roll down the other side.”

Here’s to 25, more. And then some. Right?

Depression and Chronic Illness

Ever since the news broke of the suicide committed by one of my childhood heroes, I started to formulate the blog in my head.

I knew I wasn’t going to write about how Robin Williams was an inspiration for me as an aspiring actor. Nor was the blog to be about how I always wished he could be my crazy uncle who sat at the end of the dinner table making wild, obscure gestures and jokes while we tried to eat. And I definitely was not going to follow the path of the rest of the content marketers on the internet who wrote about Williams just to get attention from the public.

No, this is about the bigger issue.

Reports have been circulating that Robin Williams committed suicide after suffering through the early stages of Parkinson’s Disease(1).

A chronic disease.

According to the National Parkinson Foundation, more than half of those who suffer from Parkinson’s Disease also experience clinical depression (2).

In fact, it is widely known that depression is extremely common in those suffering from chronic diseases.

As someone who has dealt with the ongoing pain and suffering of a chronic disease, this struck a chord with me.

I’ve never written about this topic before, and to be honest, I’m not entirely sure why. Maybe it was because it never really seemed important enough to talk about. Maybe it was because it was actually just hiding beneath the thoughts and words I was writing about other topics. Or maybe it was because it’s not something one just wants to talk about. Either way, today, I feel, is the day to bring it up.

Years ago, during the toughest part of my disease from the ages of 11-13, I was suffering excruciating, unending pain in my stomach, I was unable to eat, I did not have enough energy to sit up, and I spent most of the time in the bathroom. But, beneath all of the physical pain and anguish I was feeling, there was also something going on in my head. I would lie on my bedroom floor, stare into the mirror on my closet, and look at my pale, sick skin, deep into my grey, glassy eyes, and say out loud to myself that I wished it would all be over.

While I was never officially diagnosed by a clinician, I feel as if I can safely say I was depressed. The Crohn’s and Colitis Foundation, (now known as Crohn’s and Colitis Canada), has reported that people with Crohn’s Disease and Ulcerative Colitis have a higher risk of developing psychological problems, such as depression, than the general population (3).  I believe I was one of those people.

I had depression.

During the worst part of my disease, my parents tried to get me counselling. While it was thinly veiled as having a social worker come in just to “hang” with me in my hospital room, I was smart enough to know what they were trying to do. And, being the stubborn kid that I was (I’m a stubborn adult, now), I refused. I told my parents that I didn’t need any therapy. After all, I knew that I would be happy again once my pain was gone.

To be honest, for quite some time, I felt I had been right.

Once I recovered from ostomy surgery and felt healthy again, my depression seemed to go away after the following few months. I never experienced a day where I knew it was just gone, but I had started to realize I was happy way more often than I was sad.

Pft, therapy. Who needs it?

It wasn’t until the passing of my father, 5 years ago, today  that the feelings of sorrow and despair crept back into my mind, engulfed my every thought, and was felt through every bone in my body. The man who gave me my love for computers, the man who told me inappropriate inside jokes that I wasn’t supposed to tell my mom about, and the person who held my hand through almost all of my unpleasant and painful medical tests, had just suddenly disappeared from my life. My daddy was gone. I was a mess.

Was I more susceptible to a depressive episode because of my chronic illness? Was I depressed because of the medication I was on? Or were these feelings normal from the loss of a person so meaningful to me?

To this day, I’m still unsure.

What I do know is that after my father’s death, I actually went to get help from a counsellor. Yes, I gave in and listened to my parents.

But you know what? It helped me more than I could have ever imagined. Not only was I able to talk about the feelings of losing a parent and learn to deal with those emotions, but the therapy I went through helped me work through the feelings and thoughts I had experienced through my chronic suffering so long ago, that I had never dealt with.

I have not had one of those depressive episodes since those few months after my father’s death.

Do I think that this is the end of depression for me?

Absolutely not.

As someone with a chronic illness, it would be naive of me to think that. With pain comes sorrow, and if I am to fall back into the pit of suffering that is Crohn’s disease, I am almost certain the feelings of despair will follow.

But, if this ever is to happen to me again, I now understand that I need to get over my stubborn ways and accept help. Because, you know, they call it “help” for a reason. It helps.

Luckily, I haven’t been quite as sick as I was back when I was 13, and as 5 years has now passed since my dad’s been gone, there is little I have to depressed about. I am living a happy life with great friends, an amazing boyfriend, an awesome job, and a family that I love. But, if I am ever to get into a situation again, where I feel like I have fallen into a pit of despair, I know there is help.

I knew I needed to write this blog to bring attention to the depression that many of us are susceptible to because of our chronic conditions. Whether you have suffered, are suffering, or haven’t recognized your depression, I wanted to take the time to tell you that you should be reaching out for help – in any form.

Whether it comes from a counsellor, a family member or a friend, or comes from simply asking to talk to someone on our Facebook page, I just want you to know that it does get better if you ask for that help.

Please ask.

<3

If You Can Do Anything With an Ostomy, How Do You Change the World?

A few weeks ago I contemplated writing a blog. I was sad and disappointed in myself and I had this overwhelming urge to apologize to you all.

After thinking about it over and over again… I felt it might have just been better left unsaid. And unsaid it went.

But here we are and here I am writing about this very thing. I am writing about it because I’m no longer just sad and disappointed in myself, but angry and frustrated at the society we live in.

Beware, there might be some swearing and there might be some harsh statements. There may also be some things you don’t agree with. And, as always, that’s fine. But what you’re about to read comes straight from my broken heart.

It began the week that we’re all quite aware of – when “ostomy” became the word on everyone’s mind. When that girl from the UK with an ostomy came out about wanting to be a model.

I saw an early article about this woman. I thought it was great to see some traction in the ostomy space and was happy to see it. I even kind of laughed at her storyline about how she wanted to be a model, because, well, I’ve made it very obvious that having an ostomy doesn’t stop you from professional modelling.

At least, I thought I had.

It was the following few weeks, when her story started going viral, that I was on the receiving end of hundreds of notifications. I was bombarded with Facebook messages from Facebook “friends” – people I knew well, people I hadn’t spoken to in years, people who knew me through other people… who were messaging me to tell me about this girl and share one of the hundreds of articles about her.

At first, I thought it was nice that these random people remembered about me and my ostomy and that they were thinking of me. However, that quickly faded as I began to see just how into this viral story these “friends” of mine were.

These people were not only sharing the article with me, but were sharing these articles with everyone in their social networks. These “friends” were sharing the articles written about this girl, and just in awe about how amazing her story was. These “friends” thought she stood for something.

A story about a woman who had an ostomy and wanted to overcome it to become a model. That was her story.

And they loved it.

What the fucking fuck.

Not a single one of these “friends” had ever once shared any of the plethora of inspiring stories/pictures that many of you have shared on the Uncover Ostomy Facebook page.

Not once had any of these people shared a blog post I had written, highlighting how the ostomy has never gotten in they way of doing anything, including professional modelling.

Not once had these people even shared an article written by a national publication highlighting our efforts.

Not. Fucking. Once.

But here’s this girl, just showing off her bag, wanting to be a model. And they’re sharing it.

They’re loving everything about it.

“Hey, isn’t this what you do? She’s amazing” (It is… but like… what?)

“Hey, have you seen this girl? They’re definitely just writing about her because she’s pretty” (Ummmm thanks?)

“Hey, you know that girl in the news made me think about the ostomy so can I ask you a question?” (REALLY. Like, THIS girl makes you want to ask about the ostomy, but our community of over 6,000 people doesn’t make you curious!?)

I even had another person tell me Uncover Ostomy didn’t have any shareworthy content.

Nothing anyone would ever want to share.

Not.

Anything.

Bag_Laying_website

It was literally boggling my mind that this one girl was getting all of this attention. Actually, it wasn’t just making me question what I was doing, but it made others question it, as well.

Uncover Ostomy

Yes.

Uncover Ostomy is reaching its five year mark.

And in one week, this girl accomplished everything I had spent every minute of my free time trying to get us to accomplish, together.

And then it hit me.

This sense of failure. It literally clouded my entire life for over 3 weeks.

I started to feel sick. I was depressed. I couldn’t focus. I cried.

I don’t cry.

I started Uncover Ostomy to get the public to see the ostomy for what it is – an amazing, life changing, gift. 

And after 5 years of spending my time writing, networking, promoting, urging you all to join me and share, and all of you doing just that - some girl comes out of the woodwork just with the hope of becoming a model and the world thinks that this is so fucking amazing.

You want to be a model? So do hundreds of thousands of other women and men out there.

You want to change the world?

Cause we do. 

While the ache of failure radiated through my bones, I knew I couldn’t sit by the sidelines. So I started to reach out to publications that had mentioned this girl and to give them the cause that had been missing from the story. To give them our story.

Thanks to some amazing publications, we got a bit of press – some really good press. (By the way, thank you to all those who shared the pictures that made it into this article!)

But I was still getting a lot of “no’s.”

I had been used to the “no’s” from the media. When we started UO, we were often rejected because the ostomy wasn’t glamorous enough – even though Uncover Ostomy was meant to change that. It didn’t matter – it was still too taboo.

So, finally, this girl opens up the conversation and I try and swoop in and let them know about the goal we’ve been trying to reach for almost 5 years, and most journalists just came back to me with more “no’s.”

They said they had hit their ostomy “quota” and that there really wasn’t anything left to write about. (Apparently, attaching an actual cause is not a good addition to an already buzzing story).

Defeated, at least I understood their reasoning. I got it. That made sense. Too much of the same content. Ok.

Until today.

Today, there has been another influx of ostomy related content focused on an individual being a model.

Except for the fact that the publication writing about this? One of the exact ones where I was told “there was too much ostomy content.”

They had our website, they had our Facebook page, they had my contact info, and they had our pictures.

And they fucking ignored it all.

I’m furious.

For almost 5 years now, we have come together to build an amazing place full of support, courage, and hope. An online community where, together, we are working to change the negative stigma surrounding the ostomy. We have a goal. A cause. A mission.

But society doesn’t care.

So, here I am, sitting, writing, fuming, livid. Feelings of failure wafting back over me, tears streaming down my face.

Selfishly, I feel like I’ve waisted the past 5 years of my life.

Overwhelmingly, I feel like I’ve failed you all.

Angrily, I contemplate how our society prefers one girl’s dream to be a model, over our dream to change the world.

Here I sit.

Not knowing what to do next.

I know I want to change the world, I just no longer know how.

—————-

And yes, you can be a model with an ostomy.

You can do anything.

Itsy Bitsy Ostomy Bikini

On a sunny day on June 28th, I wanted to spend some time in the sun and soak in that much needed Vitamin D. After putting on my new bathing suit top, paired with my small bikini bottoms and modified with my special bathing suit belt, I looked in the mirror and thought, “Wow, I can barely see my ostomy.”

It kind of shocked me.

So I decided to take this picture and post it on the Uncover Ostomy Facebook Page:

As you can tell from the myriad of comments, there was quite a discussion. Much of it was supportive, with others even posting pictures of their own awesome bathing suit choices, (seriously, go look!) Some others, however, chose to focus on the fact that my ostomy is not representative of the ostomy population.

It is very low.

Some people even went so far as to angrily message me on my personal profile and then block me.

I posted this picture for a reason.

I posted this picture because I wanted to show how have adapted to my ostomy.

Did you know that I am only recently able to wear low cut bathing suits? Yes, what I look like now is not what I used to.

As a young teenager who just came out of ostomy surgery, I found myself with my bag quite close to my belly button and with an excess amount of weight due to years on steroids. Not only was I just getting used to having a bag on my body, but I was struggling with showing minimal skin in public as an overweight person.

Needless to say, I experimented with a lot of swimwear styles.

Tankinis were my first style-of-choice, as they not only easily hid my bag, but they also hid the excess weight I was concerned with. In fact, I was more concerned with hiding the weight than hiding my bag. (Priorities, right?) I found that there were so many different types of tankini styles out there, that I really didn’t have to worry about going to the beach.

Just by doing a bit of digging in the past day, I’ve found these gorgeous options below. (Go ahead, click – they lead to the purchase page!)

Tankini Option from Lord and Taylor

Tankini option from Lord and Taylor

A tankini option from Hudson's Bay

Tankini option from Hudson’s Bay

Tankini option from Tommy Bahama

Tankini option from Tommy Bahama

 

A tankini option from Kenneth Cole

Tankini option from Kenneth Cole

Eventually, as I began to meet other ostomates from around Canada and around the world, I found that a lot of ostomates chose to go for the one-piece swimsuit option. To be honest, I was really hesitant to try this style because they very clearly show off every curve of the body – again, more concerned with my weight than with the bag. Nevertheless, with the encouragement of others, I tried some one-pieces.

I found that if you picked the right cut, and with the right pattern (or all black), it was a good option. I actually own 2 one-piece bathing suits now!

A one-piece bathing suit option from ASOS

A one-piece bathing suit option from ASOS

(I literally just bought this one right now, while doing my research…so, make that 3.)

So after mastering the tankini, then moving on to the one-piece, I was finally ready to tackle the bikini. I had lost the steroid weight, and I felt that I was ready to try something new.

I tried everything from boy short bottoms to high-waisted bottoms. I tried different styles, different colours, different brands, and eventually found pieces that worked for me. I still wasn’t in “full bikini” mode, as my ostomy was still quite high, but they did the job, just right.

(I own a pair of the bottoms on the left, anddddd I just bought the bottoms on the right…. I stopped shopping after that, though, I swear!)

Now, my drawer overfloweth with the multitude of different bathing suit styles I own. Depending on the day and the situation, I choose what I think works best for me. Some days I feel confident and go for a super skimpy piece, while other times I opt to cover up.

One thing that actually really stuck out for me, after posting my picture to the Facebook page, was that people were calling me out for even trying to cover up my ostomy. To be honest, I was a little shocked that people were upset about it.

High-Waisted bottom option from American Apparel

High-Waisted bottom option from American Apparel

High-Waisted bikini bottom option from Hudson's Bay

High-Waisted bikini bottom option from Hudson’s Bay

I want to make it clear that I have absolutely no qualms against anyone wearing their ostomy outside of their bathing suit (have you seen this girl?). Once in a while, I do flaunt my ostomy in a skimpy bikini, however, admittedly, only around people very close to me (like my boyfriend.)

The reason for this, and you’ve probably heard me say this before, is that after having my bag for so long, it has literally become just another part of my body. To me, my ostomy is my ass, and I choose to treat it as such. So, when I’m getting ready to go out in public wearing a bathing suit, I just think, “would I want someone to moon me on the beach?” Hellll No. So I wouldn’t do the same thing to them ;).

(Though, seeing some of those ostomy flaunting pictures posted in the FB post comments… You are slowly starting to change my mind… Nude beach, anyone?)

Anyway, here I am, almost 12 years later, and I find myself with 0 steroid weight and with a lower ostomy than I once had. My now healthy body had finally decided to grow my torso to its full length and the time has faded my small laproscopic scars into my skin.

But you’re right.

I’m not 100% representative of the ostomate population.

When posting this picture, I never considered this to be the case.

What I do consider myself to be is a representation of what experimentation, adaptation, and confidence can look like.

Not all bathing suits fit people the same way – ostomy or not. We all just have to find what works for us.

When you do, I hope you flaunt it with pride.

————————

Have your own ostomy bathing suit pictures? Post them to the Facebook page and let us see what style you wear!

All is Fair in… Full-Time Employment

Job hunting is hard

So, yeah. Maybe for a while, I was being really dramatic about being unemployed.

Finding employment is hard. I was stressed!

But I wasn’t really stressed about finding a job. I was stressed about finding the job.

I had previously been working at a pretty poorly run company and saw the signs of it going downhill, fast. I wasn’t being respected, I was being asked to work overtime to get something done and then it would be ignored and forgotten as if it was never needed in the first place. They also weren’t paying me the right amount or on-time, and just last week, I was finally paid my salary for working last July. What was even worse was they were lying to my face – and it was pretty damn obvious.

When I left that job, I felt a rush of determination. Determination that I was going to find a new job – the job. 

You know, like when you break up with a really terrible boyfriend (and we all know I’ve done that a few times…)

“I am sick of dating idiots, douchebags, psychos. I am ready for the one.”

So, for my month of unemployment, I was freaking out. You know, like a regular single girl.

“What if I can’t find the one?”

“What if I find the one and they don’t want me?”

“What if the one doesn’t exist?”

I felt desperate. I felt like I was reaching that age “when it’s kind of weird that you’re still single.” It almost felt like I was living that life where your grandmother constantly asks you why you’re still single and if she’s going to manage to live long enough to meet her great-grandchildren. Except this was about a job – and for me, not having a job was way more awful than being single forever. I was determined to find the job

And I was going to do damn well everything in my power to find it, grandma.

Ugh but the process. Going through the motions again and again and meeting people who are awful or putting yourself in awkward situations and maybe, if you’re lucky, coming out on top.

You know? The process.

The awful, horrible, excruciatingly painful, process.

You start by updating your online profile as if someone is just going to magically decide you are the one:

You start the only way you know how – the internet. You update all your channels, whether it be Linkedin with all your great experience and achievements, or your Match.com profile with all great your experience and achievements. You update the headshot, on both, to the most glamorous and least drunken photo you can miraculously find, and you cross your fingers.

Updating profile to get a job

You ask anyone you have ever met if they might know someone who knows someone who might, maybe, be interested in you:

Your best friend know of any job openings at her boyfriend’s office? Does your friend’s boyfriend also have any single friends? None? What about your friend’s boyfriend’s sister? Her best friend?

Awkward for love

You graciously accept anyone’s offer to connect you with the one, even though you think you are way better than that but also think you have no other choice:

Like when your grandma cares so much about you and your happiness that the thought of you being single literally kills her, so she sets you up with Fran’s grandson who lives in his parents basement and can’t drive. Or your friend’s dad owns a pizza hut that needs a driver, and you think of no better way to use your Masters degree. And you do it. You do it just in case you can’t find anything else.

Nothing else.

Um, no

You also reach out to any and all prospects even though they are insanely out of your league just in case they are desperate:

Hot guy at the bar is standing alone so obviously I’m going to awkwardly dance over to him because, why wouldn’t he fall in love with me?

Need 7-10 years experience? Yeah, I’m 24, but I’ve been doing this since I was 13 – I swear.

I promise

No, you don’t even know.

You finally find someone who is willing to give you a chance and take you out on a date/interview you (same thing) and you have to act like you think you’re pretty great when really you have no idea why you’re on this planet to begin with:

Why, yes, I just casually hike all the time and I love nature and all things relevant. Experience with Quickbooks? Who doesn’t have that? That’s accounting, right???

Thinking you're more amazing than you really are

You end up realizing that your date/interviewer is reaching into your soul by asking you a series of “thought-provoking” questions that literally make you reconsider your very existence but there’s no way out:

No idea

“If you were a box of cereal, which would you be and why?”

“What is your least favourite thing about humanity?”

“What do you think about when you’re alone”

meep.

After the torturous first date/interview, no matter how well or poorly it went, you play the “waiting game” and want to die:

Do you wait for them to email you first? Do you send the first “I had fun last night” text? Do you send a “thank you for considering me” email or is that too needy?! HOW DO YOU KNOW!?

Can they see me?

Sometimes, you get rejected, but you don’t let that stop you from “getting back out there” because you will not be one of those hoarding catladies:

Your loss

My mom thinks I’m awesome.

Then, somehow, by forces unknown, you end up finding the one, tell everyone you’ve ever met about it/them, then regret it immediately in fear that you’ve jinxed any chance of closing the deal:

Shh

Can they hear me?

Finally, if you’re really, really lucky, you actually land the one, and wonder every fucking day for the rest of your life how you managed to do that:

Only you

I honestly could not tell you how I did it.

After going through terrible date after terrible date, I somehow, by the lucky stars above me, found my perfect man. He treats me like a princess, takes care of me, values my intelligence, and makes me smile for no reason at all.

After going through terrible interview after terrible interview, I also, somehow, found my perfect job.

I currently work for a digital agency that is better than any job I’ve ever had or could ever have imagined existed. Even before I started, they asked me if I needed benefits, and only picked a provider that would fully cover my ostomy supplies.They constantly give me thought-provoking feedback and they actively seek out ways for me to learn to grow me as a professional. The whole team gets to go on work retreats in the mountains and they feed our silly little food cravings by supplying the best and healthiest snacks to the office. I was also promoted after only working there for a month because they valued my skills and intelligence. And the best part of all is that the place where I work is like a second family.

It’s nice to be able to look back now and laugh. Yes, I reached out to everyone about everything. Yes, I had terribly awful interviews/dates. Yes, I got rejected. But it was all worth it.

It’s not supposed to be easy to find the one, right?

They say that people tend to get married to their jobs. Well, if that’s true, I am lucky to have found one I could spend the rest of my life with.

Mr. Right… Now. Or So I Thought.

I am an extremely lucky girl to be able to say that I’ve been on a tropical vacation at least once, every year.

99% of the time, it has been with my family.

Usually, after dark, on these vacations, my mother would go to bed early and my brother and I would find some friends. Eventually, my brother would go off with the kids close to his age, and I would go off with some friends closer to my own.

Ok, well… usually with a boy.

In the past, going on vacation was a chance for me to live outside of my normal, strange life. In high school, I was picked on by boys, instead of picked by these boys. I was that awkward girl who could never get a date, all thanks to the 2 years I spent isolated in the hospital, battling Crohn’s.

Eventually, I came to realize that on vacation, these people who I would meet didn’t know about my past and didn’t jump to tease me or to shun me for being so strange. On vacation, I had confidence. On vacation, I was the girl that the guys wanted to talk to. It was weird. It was also really fun.

So, I started collecting vacation boyfriends.

Ignoring the fact that it sounds really bad…. as the years went on, I found that every vacation there would be some boy that would be interested in me and vice versa. Even though I had moved on to university and had overcome my boy repellant curse, vacations were a time for me to just enjoy someone’s company. For the week of the vacation, I’d usually find a boy to hang out with around the pool/beach, to hang out with in a larger crowd, and then to stay up really late talking with/maybealittlebitofkissing. It was just a way to add an extra element of fun to the trip, you know? (don’t judge me……….)

Every vacation, however, the same rules would always apply. We’d have a fun week, we’d maybe add each other to Facebook, and then we’d never really talk again.

And it was awesome.

Unfortunately, as things got a little crazy for me last year, the last tropical vacation I went on was last February in Jamaica, and it was the first tropical vacation I was taking without my family. It was actually a destination wedding for one of my utmost favourite couples, to which the bride also happens to be one of my sorority sisters. And yes, other sorority sisters were coming too. I thought it would be nothing but partying. I booked the trip as soon as I could, and was dying for that week to come.

Long story short (since I already wrote a bit about it here), I met Matt on this trip. He was on the same resort trip that I was on, for a different friend’s wedding. Wanting to maintain my vacation boyfriend streak, and despite my friends calling me ridiculous, I set out to get him to notice me and join me for a week of fun.

My (super secret) tactics worked, and we ended up hanging out all week and having an amazing time. It also didn’t hurt that my sorority friends ended up going to bed early every night, leaving me with no other option than to hang out with Matt. We partied with his friends, we stayed up late sitting under the stars talking about everything we possibly could, and…etc.

Matt had become my vacation boyfriend and had made that week even better than I had ever imagined it could be (and I had already imagined it being pretty great).

When the vacation came to an end, I knew there would be rules to follow. Matt was only in my life for that week. No matter how good looking he was, no matter how nice he had been, and no matter how happy I had been that week – our vacation relationship was over. And I kept repeating that to myself even in the boarding area of the airport on the way home. After all, in real life, he lived 2 hours away from me.

I was never going to see him again, and I was actually really bothered by that thought. But I shook it off.

GET IT TOGETHER – I told myself.

Then, something happened: In the airport baggage claim, back in Toronto, Matt called me over and asked for my number.

Ummm, what?

This isn’t how it’s supposed to happen! I thought we had both agreed to these unspoken rules of awkwardly adding each other on Facebook and never seeing each other again. No one keeps talking to their vacation boyfriend/girlfriend after the vacation is over! It’s the RULE.

I still don’t know why I did it (and I almost didn’t), but I walked over to him and gave him my number.

1 year later, I have never been happier at this very moment than I have been in my entire life. 

This past weekend, Matt and I celebrated our “official” 1 year anniversary. Though we met last February, we continued to see each other every weekend, until he eventually asked to be my “real” boyfriend, last April.  Since late October, he’s been living in Toronto, and next month, he’s moving in.

I’m usually one to follow rules, and I’m also usually one to cut emotions from a situation – it’s how I’ve been able to just “have my fun” on vacation. But there was something about Matt that I couldn’t forget. Whether it was the way he made me think, the way he made me laugh, the way he looked into my eyes, or the way he held me – there was just something.

And there still is.

<3

Remember to Always Burn Bright

I’m not afraid of a lot of things.

Not in the “I’m too proud to admit that I’m afraid of something” way, but more so in the sense that, when you’ve been through as much as I have, most things are much less scary, in comparison.

I’ll easily admit that I don’t like heights (not in terms of flying, but in terms of standing on top of a really tall ladder, obstacle course, rollercoaster, etc.), and I dislike a lot of things, like needles, and surgery, and death. Because I’ve had to confront these things head on, and have survived, the anxiety I had once had in the past has dulled.

It wasn’t until this week, however, that I realized that I am, in fact, scared of one thing.

Frightened. Terrified.

Of this one, all-consuming, ever-flowing, never stopping, life-altering thing.

Time.  

Time moves along like a train barrelling across a track. It has a predetermine route that it will continue to follow until it reaches its destination.

Except time doesn’t have a destination.

Time continues to barrel on, never slowing, never stopping, because nothing can ever get in its way.

Nothing, and no one can control time.

It just ticks along.

Tick, tick, tick.

I mean, that’s horrifying, right?

It was Thursday night that I really realized how terrorizing the concept of time is.

I accompanied my Zaida (grandfather) to his retirement home’s Passover dinner. I love my Zaida very much, and did not hesitate to agree to join the festivities. It’s just, you know, retirement homes.

I’ve never ever liked the idea of being old. I’ve actually said, many times, that I’d rather live a rich and full life while I can, and then end it when living becomes more of a hassle than an enjoyment.

It was this same logic that I applied when I was offered ostomy surgery. I would have rather had surgery to stay alive and live a normal life, than to be stuck, sick, in a bed, unable to live. I mean, I was going to die, but I had my chance to live life, so I took it. But when you’ve reached the end of your life, there are no more options. That’s it.

Time decides that for you.

Tick, tick, tick.

While I enjoyed spending time my Zaida, over the holiday dinner, I couldn’t help but scan the room. I saw tons of octogenarians sitting in their wheelchairs – some with family members, and even sadder, some without – trying to eat the chicken dinner they had been served. And it was hard for them. Hard for them to eat.

Time made them this way.

Terrifying.

At the end of the festivities, my mother and I wheeled my Zaida back to his room and said our goodbyes. It was time for us to have our own meal. We began discussing options, until my mom suddenly knew exactly where we were going to eat: Sushi Bar.

Sushi Bar is a restaurant owned by a man named Jimmy. Jimmy once owned another sushi restaurant called “Dr. Sushi,” and it was my father’s favourite restaurant. Jimmy’s restaurant was the first place I had ever tried sushi, after my dad began bringing me there, at 8 years old, for our many father-daughter dates.

One day, over california rolls and eel sushi, I mentioned to Jimmy that I loved his place and that I wanted him to do well. Jimmy, delighted, said that he had a way that I could help him. He handed me a tshirt and a handful of fliers, and told me that I could help him by going to flier the neighbourhood. He promised to pay me, and I was delighted to have been offered my first job. My dad, fully supported me, and we had planned to give out the fliers, together. 

Now, the details get fuzzy from this point.. but I remember that I never had the chance to flier. I got sick. I ended up in the hospital.

And I remember being extremely upset about being unable to flier. I felt like I was letting Jimmy down.

Time went by.

Eventually, Jimmy closed Dr. Sushi.

Time had decided that it was time for a change.

We never actually knew where Jimmy had gone, and it was just one of those things that happened.

Recently, however my mother and some of her friends ended up at a restaurant, that she found out, was his. He had come back into town and opened up a new shop. She had, apparently, gone up to him and introduced herself, and he knew exactly who she was. He also remembered me and my dad. He did not know, however, that my dad had passed, and he was sad to hear the news. My mom thought this was the perfect place for us to dine, and she was excited to see what Jimmy’s face would like when seeing me, after all these years.

All this time.

Tick, tick tick.

I walked into the restaurant and saw the same man I remembered from all those years ago. While he did not recognize me, (and said he would never have known it was me on the street), he knew exactly who I was.

Though it did grey him, and add a few more wrinkles to his face, time, thankfully, did not erase those memories.

Time has the ability to give and to take away.

Time gave us these memories, but it also took away my dad, my health, and so much more.

While I’m usually not a weirdly emotionally, touchy-feely, “symbolic,” type of person, I did find it notable that Jimmy included a candle on my specially made plate.

Sushi Bar Sushi

A candle burns for as long as the wick allows.

There are variables that might extinguish the flame, like water, or air, however, the flame usually reaches the end of the wick.

We are the candle and time is the wick.

And all we can do is burn as brightly as possible, for as long as we can, until we lose our flame.

Things are always going to change, and we’re all going to get old, and I think that is what’s so scary about time. These things are going to happen and there is absolutely nothing we can do about it.

We might as well use the time that time allows.