Mom Level 11

Mom; noun

1. A beautiful and rare creature that picks you up when you fall down, feeds you soup when you’re feeling sick, and nags you to wear a sweater when it’s cold.

Maybe my definition of mom is a bit specific.

But, in some shape or form, I think all of us have mothers – biological or adopted – who fit into this definition. Whether they stay at home to make sure our lunches are healthy, our beds are made, our soccer jerseys are washed, and our homework is done, or they work long hours to make sure there is food for lunch, a bed for us to sleep in, clean clothes to wear, and a chance at a good education – mom’s put their wants and needs aside to take care of us.

Sure, sometimes mom’s can be naggy, invasive, and embarrassing (see crazyjewishmom or my grandmother, (mom’s mom) who has since passed but whom I miss dearly, but could have been “Crazy Jewish Mom”.) Sure, they may make us want to pull out our hair, scream at the top of our lungs, or hide under the bed. And sure, sometimes they think act like they know everything – but 100% of the time they are doing what they do because they love us.

If mom’s could be rated on a scale of 1-10, they would all be a 10.

Mom level 10.

But there’s a special class of moms. Moms who surpass the scale.

Mom level 11.

These are the mothers of kids with chronic illnesses.

Moms with sick kids are a whole other category of mothers. They take on all the responsibilities of moms at level 10, with an additional level of anxiety, stress, fear, and worry.

My mom is definitely a mom at mom level 11.

Whether she was peeling strawberries for me to eat, because I couldn’t eat the seeds on my special Crohn’s diet, or she was waking up at the sounds of my whimpers and lying beside me when I couldn’t sleep because of the pain, or when she’d come sit with me when I was in the hospital on her lunch breaks from work so I wouldn’t be alone – my mom did it all, while still working a full-time job and having to be a mom to my little brother.

Level 11.

The thing about mom level 11 is that it never ends. Even now, with my Crohn’s kind of maybe not but maybe in remission, my mom still keeps an eye on me. She bugs me to email my doctor, or checks in on what I’m eating, or how much I weigh, or just how I’m feeling. She’s always worried about me, even though I’m 25!

I’m really lucky to have her in my life.

Well, actually, I’m extra lucky.

I have another mom at mom level 11 in my life who also keeps tabs on my health.

My grandmother (my dad’s mom), who she herself is also the mother of a kid with a chronic illness.

From what I’ve been told, a long time ago, my uncle struggled with stomach pain for a while, but doctor’s kept telling him and my grandmother that nothing was wrong. Knowing full well that something was, in fact, wrong, my grandmother continued to pressure doctor’s until they finally were able to diagnose him with Crohn’s when he was 13 years old. She not only had to take care of her young sick son and all the symptoms and struggle of Crohn’s, but she also had to maintain a household and a business and 3 other children.

And then me. She had to worry and stress alongside my parents while I suffered from the same disease she had seen her son suffer from for most of his life.

She might actually be a mom level 12.

I don’t know what the future holds for me, but there is a good chance I, myself, will also be a mom to a kid with a chronic illness. That scares me to death.

At this point, I can barely see myself being able to reach mom level 10. Babies cry and I give them right back to where they came from. I hardly have enough hours in the day to get everything I want to get done, now – how the hell will I have any time when there are kids in my life? I mean, my boyfriend gets sick and I can barely handle him whining on the couch!

If I struggle to imagine having to take care of a healthy tiny human, how am I supposed to take care of a kid who can’t eat, can’t sleep, who is in unbelievable pain and is on the brink of death?

I honestly do not know how my mother and grandmother were able to do it. Or how they can still do it.

But they did and they are and they will continue to do so.

At least I know that when I do have kids, and if my kids are kids with chronic illnesses, I’ll have amazing role models to look up to.

You are both the strongest people I know. I love you both so much <3

A photo posted by Jess Grossman (@jessgrossman) on

 

Dear CDC…

Dear CDC,

My name is Jessica Grossman.

In my 25 years of life, I’ve tried to live as healthy as possible.

I watch my diet.

I exercise

I take vitamins.

I don’t really drink.

And I certainly do not smoke. 

But I have an ostomy.

For reasons completely out of my control due to Crohn’s Disease, at the age of 13 years-old, I was told that my disease was going to kill me unless I had life-saving ostomy surgery. 12 years later, I’m alive.

Uncover-Ostomy-12-Year

I get it.

You want people to quit smoking.

I do too.

Smoking is gross.

It’s bad for you.

My grandmother died from smoking.

But you’re doing it wrong. So. Very. Wrong.

And I’m here to call you out.

I’m here to enlighten you on something you really should already know. You are a major health organization, after all..

Centre for Disease Control, this video that you put out, featuring a woman named Julia, is what you think is the perfect way to scare people out of smoking.

I’m not entirely sure, but I assume that you, Julia are a real person with this real story. But, Julia, if this your real story, I am saddened for you.

You had colon cancer due to smoking and you needed an ostomy.

But what you said in this video, Julia, to be honest, shocked me. You said:

“I had chemo and 2 surgeries, but what I hated the most was the colostomy bag.”

I’ve never experienced chemo myself, though I have witnessed many others go through it (including my father) and it looked horrendous. Losing hair, weight, being weak, nauseous, anemia, infections, … were all not as bad, you say, as being alive with an ostomy bag.

No, I’ve never had chemo.

But I have had those side effects as symptoms of my Crohn’s.

Losing hair and weight? Check.

Nausea and anemia? Check.

Infections? Check.

I am not comparing what I went through to having chemotherapy, but I still find it hard to believe that an ostomy bag is worse.

And you, the CDC, you chose to highlight this. You chose to highlight that no matter how horrendous chemo is, an ostomy bag is worse. 

The campaign continues, with another, longer video from you, Julia. Here you give a bit more detail into what life is like with a bag.

It turns out, you only had a bag for a year. It’s sounds like that was a sad year for you. I’m sorry it was.

“I didn’t want to be around anyone.” You say. You say this because you were worried the bag would come loose and it would smell. You had gas and cramping and you say you were essentially “stuck at home.”

Julia, the only time I’ve ever been stuck at home was during the time I was sick with my disease. My bag rarely ever comes loose, and thanks to my healthy diet, it doesn’t even smell. Gas and cramping? My boyfriend has more of that than I do. He smells worse, too.

Julia, maybe you didn’t know we were out there – others with ostomies who could help you. Others who live meaningful and enjoyable lives. Lives that, without an ostomy bag, would not exist.

I can’t blame you, though, Julia.

It’s hard to find us. It’s hard to find the positive light hidden within our ostomy bags. You know why, Julia?

Because of organizations like the CDC.

Yes, CDC, because of you.

As your mandate states:

“CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.
CDC increases the health security of our nation. As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.”

Saves lives.

Yeah, there’s a part in there that says you work to save lives.

CDC, do you realize that what you’re doing is completely contradictory to your mission?

Yes, you’re working to stop deaths related to smoking. But in return, you may actually be increasing deaths that could be avoided with ostomy surgery.

1 in 200 people in the US have some form of IBD. If it gets out of control, IBD can lead to the need for ostomy surgery. Without ostomy surgery, IBD can lead to death.

And this 1 in 200 number is just those with IBD.

Not those with colon cancer.

Not those with diverticulitis.

Not those who had traumatic accidents that need the surgery to make it through the night.

Ostomy surgery is a weird surgery. While in some cases it’s an emergency procedure like during an accident, in most cases, it’s elective.

Mine was elective.

I was literally given the option to choose between ostomy surgery or death.

And many other people are given this choice, too.

But they aren’t getting a chance to make a rational decision.

They are clouded with misconceptions and misguided notions.

Because of campaigns like this, the negativity surrounding ostomy surgery continues on.

Because of campaigns like this, many people are choosing to struggle through their disease instead of having ostomy surgery.

Because of campaigns like this, many people may choose to die.

Because of you CDC.

In the meantime, I’ll continue what I’m doing over here.

I’ll continue to spread positive ostomy awareness wherever I go. I’ll continue to visit patients faced with the decision to have ostomy surgery and help them make that rational decision. I will continue blogging about how lucky I am to be alive because of surgery. And I’ll continue to call out organizations like you.

In the meantime, CDC…

FU CDC

Love,

Jess.

—————————————————–

I’m supporting the UOAC in their efforts to get the CDC to remove the campaign. I have signed their change.org petition, and you should too.

It’s a Love-Hate Relationship

The sun shines through your window as a new day breaks. You open your eyes and you roll over. It’s your first thought as the day begins.

Thinking about being together again.

Then, as the day goes by, you start to question it. You gave in. You wonder why you did because you know you shouldn’t have. Your whole body regrets it.

The love-hate relationship.

I’m currently in a love-hate relationship. A relationship that, when it’s good, it’s really good. Every moment we spend together fills me with joy and happiness. But when it’s bad, it’s really bad and it hurts everywhere.

My love hate-relationship has been going on for years.

What relationship is this, you ask?

My relationship with food.

Relationship with food

I’ve been in a love-hate relationship with food for a very long time. We’re one of those couples who met a really long time ago and started out as friends. We’ve had many ups and downs – lots of fights where we just can’t agree with each other. Some great times too, when the comfort overwhelms me. We have such a history that we keep finding our way back together, no matter how difficult things get. No matter whom, or what gets in our way, we always find our way back to each other.

But right now, we’re broken up.

For some reason, myself and food have just not been getting along. As I wrote recently, we broke up for a bit – for over a month, until my doctor helped us work things out. I gave food a chance, and it seemed like we were getting along fine for a little while after.

A few weeks ago, however, food stabbed me in the back again – and at the worst possible time.

I woke up early one Saturday to get to the set for a new show I’m filming and felt very strange. Not having a choice, I headed to the filming location. Within 10 minutes of being there, we got into a huge fight and I began throwing up. I couldn’t stop for basically the entire day, while filming all of my most important scenes.

The director would say “ACTION,” I’d do the scene, the director would say “CUT,” and I would run to the bathroom to vomit. Then I would come back and start over again.

Uncover Ostomy - Love Hate Relationship - Food

Food is one of those illicit lovers who can make you feel amazing one instant, then horrible the next.

The feeling of eating something decadent and sweet, or sour and crunchy – those are some of my favourite feelings. Like any good lover, food can make you feel like you are the most important person in the world.

Uncover Ostomy love hate relationship food

But like any bad boyfriend, food can also take that all away. Not only can food ignite pain in my body from the inside out, but it has the ability to eat at my mind and make me feel like I’m worthless.

Having Crohn’s disease and an ostomy has required food and I to do things in our relationship that many others will never have to do. I’ve had to cut out stringy foods and foods with seeds to dairy to meat to essentially cutting out all food in general. I’ve been on almost every diet known to man to even not being allowed or able to eat anything at all. Because of this rocky road we’ve been down and continue to follow, it’s had both physical and psychological effects on me.

Effects that still haunt me today.

For those amazing faithful readers of mine who have been following me for years, you may remember the days when I used to complain about the love-hate relationship I had with one of my exes. I would blog over and over again about how we had gotten together after being friends for years, had broken up, then gotten back together, then broken up again, and then miraculously found our way back to each other before breaking up one last time.

It was exhausting.

But here I am, about 7 years later, and I find myself chatting with him on Facebook chat, seeing him at parties, and going out for with him for lunch (well – only tea for me) last week.

With my ex.

Why? Because we’re friends again. Really good friends, actually. Just like we used to be before we dated.

Which is crazy to think because if you remember how messed up our relationship used to be, you would have never thought that we’d ever want to look at each other again, let alone spend time together. But here we are – civil and getting along well.

This got me thinking that maybe there is a chance for me and food. Sure, things are rough right now and I’m unsure of where we might end up, but there may be a settling point where we can both get along, just in a different way. This is what I’m currently working towards. I’m taking that break from food, but trying a little bit of something here and a little bit of something there. Letting food in just enough to keep me going but not too much to bring me back down.

While there are still a ton of physical and psychological side-effects that food has given me, I think that if I work hard on mending our relationship in whatever form that may be, those will hopefully disappear.

Where our relationship will go in the next few weeks, months or years is unknown – but at least I know anything is possible.

Excuse me while we go work it out.

uncover ostomy love hate relationship food

I am Fine.

“Fine.”

By definition, the word means “in a satisfactory manner,” or, you know, that everything is OK.

We say it often. When someone, for instance, asks how we are.

“Oh, I’m fine.”

But what does the word “fine” really mean?

Many of you reading this might already be thinking – wait, fine does not always mean everything’s OK. In fact, does it ever really mean things are satisfactory?

As the sitcom formula goes, a guy does something, unbeknownst to him, that upsets the girl. He carries on with his day, until he realizes the girl is less than happy with his presence.

“Honey, something seems different. Are you ok?”

“Yes, I’m fine.”

“Oh, ok, great. Want to get some dinner?”

“NO. GO AWAY.”

End scene.

never do this.

Really.

I promise.

pinky swear

Trust me, I am not one of those women who just keeps things to herself and says she’s fine when she really just wants to punch her guy in the face. For real, my boyfriend can attest to that. If something’s wrong, I’ll say it. (Ok, as I’m writing this, he’s saying I’m lying. I DO NOT AGREE.)

Anyway.

There are a lot of women, and men too, who do this. Pretend like nothing’s wrong, while they’re really seething on the inside.

If no one has said this to you, before, I’m saying it now – playing the “fine” card, does not accomplish anything. All it really does is it makes things confusing and unnecessarily convoluted.

Just like my body has been doing.

Yes, my body is currently playing the “fine” card.

As I wrote a little while ago, I was having strange pain in my stomach. It was so bad that it stopped me from being able to eat, being able to exercise, and stopped me from being able to go out with friends. It was also such a weird pain that I couldn’t really tell what it was – and neither could my doctor. It was terrifying.

My body was attacking me from the inside and we had no idea why.

In an effort to reduce the pain and hopefully solve the problem, I went on a clear fluid/soft food diet for over a month and a half. I also had a number of uncomfortable and intrusive tests done to determine what the issue might be. After all was said and done, there was still no solution.

My doctor told me that because he couldn’t figure out what was wrong I should just try eating again and see what would happen.

I really missed food, so I thought I might as well try. The following 2 days the pain persisted. I still had no idea why.

Then, miraculously, on day 3, I ate a meal and did not feel a thing.

An hour later.

2 hours later.

10 hours later.

My body was completely fine. 

What the actual hell?!

My body had decided it was fine. 

Do I know why it was mad in the first place? No. Do I know what happened to make it better? No. Do I know when it will get mad again? No.

I have no idea what is going on inside of me. Not a single clue. And yet, somehow, on some random day, it decided that everything was A-OKAY and I could go along my merry way.

It would normally be at this point of the sitcom where the girl finally explodes and tells the guy everything that has been wrong for the past month, they talk, and eventually sort it out.

However, for me, I have no idea what was wrong, or if it will be wrong again in the near future.

While my mom and my boyfriend keep telling me that I should just be happy the pain is gone, there is a little voice in my head that keeps reminding me that it could come back at any time. You know, that same voice inside your head that reminds you to be careful what you say because you might piss off your girlfriend.

Guys, let me tell you, if that’s what you think when you’re around your girlfriend, the relationship is not going to last.

But I can’t break up with my body.

I’m stuck in a relationship with it.

For whatever reason it decides to be mad, whenever it decides to be mad, I have no control and no solution. I just have to ride it out until it decides that it’s over it.

So, for now, I am fine.

sigh

I Don’t Remember How to be Sick

I finally decided to go to the doctor.

After my mom called me out for my blog post last week, after my boyfriend bugged me enough, and after being on clear fluids and having pain for 3 weeks, it was time.

Yesterday afternoon, I emailed my GI doc’s receptionist at Mt. Sinai hospital in Toronto, detailing my symptoms – some of which I have never had before. Early this morning, she called and told me that the doc could fit me in. This doctor barely has time for anyone and he was fitting me in.

This must not be good.

I made it to my appointment today, sat down and went over my symptoms with my doctor. He hummed and hawed, asked me some questions, and poked at my stomach – the usual. The unusual part, however, was that he had no idea what was wrong with me.

In fact, he wasn’t even sure if my symptoms were related to my Crohn’s Disease or my ostomy. Maybe the gallbladder? Maybe the pancreas? Maybe a stricture or maybe just some scar tissue. Who knows! The only way to find out, he said, was to schedule me for some tests and test out a med.

I was sent across the hall to get my blood drawn, downstairs to fill a prescription, then back up to the 5th floor to try on some hospital gowns for my xray photoshoot.

After an hour and a half of running around the hospital, I left, and started to walk home.

It was cold out, but sunny, so I put on both my jacket hood and my big sunglasses.

And I walked.

I kept walking.

Mind blank.

Walked some more.

My mind still blank.

I walked by a pharmacy.

Without even knowing it, I walked through the door.

I didn’t need anything.

I was drawn to the candy section. The only area that had food I could eat.

I circled 2 aisles.

I still didn’t need anything.

Mind still blank

I stopped on my second time around and stared at some candy. I lifted it off the shelf and read the ingredients.

I didn’t need it.

I turned and started to walk around the rest of the store.

And then my eyes started to well.

Still in my sunglasses, so the lady across from me in the store at the cash register couldn’t see, tears made my vision blurry, and a lump in my throat formed.

I didn’t want to eat anymore stupid candy.

I wanted a real meal. Something so simple. Something I haven’t had in 3 weeks.

Lump getting bigger, I walked out of the store, and continued walking home.

My mind, no longer blank, now racing, fuelled my walk home – how could the doctor not know what was wrong with me? How could I not know what was wrong with me? What if I need to be on medication again? What if I have to go back to the hospital? What if I need surgery? What am I supposed to do? Am I strong enough to handle whatever is coming my way? Will I have to stop working? What about my boyfriend? Would I still have the energy to continue working on all the extra things I’m working on? Could I spend weeks in a bed again? Could I handle people poking and prodding me? What about the pain that comes with tests? What if the pain gets worse?

And so on, and so on..

And then, my mind stopped on one last thought -

I don’t even remember how to be sick.

The last time I was really, really sick, I was 13 years old.

Whether it was because I was too young to understand how sick I was, or if I just didn’t have anything to lose, the thought of being sick was never that frightening.

I remember that I could just accept the fact that I was living in the hospital. I remember being ok with missing out on holidays and vacations. I remember accepting that I was doing school work from a bed and skipping after school activities with my classmates. I remember just laying back while doctors and nurses poked, pinched, sliced and diced me. I remember being able to handle the pain. I remember it all just being ok.

Or maybe it was all the drugs. Most of what I remember experiencing is clouded in a haze of drugs.

But what I do remember in that haze is that I just knew how to be sick.

What about now? I’m 25 years old and very aware of what could happen and what might happen and how much of an impact it would make on the wonderful life I’ve built.

I don’t remember how I did it.

Maybe it’s the fear of not knowing. Maybe it’s because this is the second time in 2 years. Maybe it’s because I have so much more to lose.

Whatever it may be, at this point, I can’t really fathom what’s coming and what I’m going to do about it.

The only thing I can do is make light of the situation and hope for the best.

 

Can someone say sexy hospital wear? Sigh. #crohns #colitis #ostomy #ibd #hospital

A photo posted by Jess Grossman (@jessgrossman) on

But You Don’t Look Disabled

A few months ago, I wrote about how I had applied for the Canadian Disability Tax Credit here in Canada, which, when approved, comes with some tax benefits. If you remember, I had quite a time trying to get approved, but, eventually, after going through the process of re-applying, rewriting applications, bugging my GI doc to fill out some extra forms, I was finally granted disability status in Canada.

Yes. In Canada, I am considered disabled.

And yes, I know I don’t look it.

 

fabulous

According to the Canadian Government’s definition of disabled, I do, in fact, fall under that category. My ostomy makes being alive very different and more complex than non-disabled people. Though I’ve had it for almost 12 years and it is part of who I am, it still has its ways of being a pain. The extra time, cost, and complexity of my ostomy qualifies me as being disabled.

And it doesn’t matter that I don’t look it.

One of the benefits of having the tax credit is that I am able to open up a special savings account. As everything is when it comes to government, it’s a process to get it set up and comes with many stipulations and rules. Before I set up this savings account, I wanted to do my research, so, I went from bank to bank, talking to their employees, asking the questions I needed answered.

And from bank to bank, I would get the exact same thing:

“Hi, I’d like to talk to someone about opening an RDSP here at your bank.” I would ask.

“Ok, I can find someone for you to speak with. Who did you say this is for, again?” They would say.

“It’s for me.”

“A Registered Disability Savings Plan is for you.”

“Yes.”

“You know you have to be approved for it, right?”

“Yes.”

“Have you been approved?”

“Yes.”

confused

“…”

“Ok… let me just get someone for you…”

And off they’d go, walking a few steps, then looking back to get a good look at me in my skinny jeans and high heals, and wondering if I was just some idiot.

Eventually, I found the bank I wanted to open the account with (not from the help I was getting, but from the investments…) and I went to set it up.

I went to the teller, and said the same thing I did time and time again – I wanted to open an RDSP. After witnessing another round of confusion and hesitation, I was eventually taken to an employee who could set it up. It was only after a quick introduction that it went straight into the usual:

“This RDSP is for.. you?” he asked.

“Yes.” I responded.

“Disability Saving Plans, right?”

“Yes.”

“With a D.”

“Yes. I’ve been approved for it. I know how much money I can put in. I know the rules about taking money out. I just need someone to set it up for me.”

“You seem like you know a lot more about this than I do.”

“Well, I’m not mentality disabled!”

eye roll

Eventually, I started giggling out of frustration and exhaustion and just wanting to have the whole thing finally done with. The banker, recognizing that I was laughing at my own inappropriate joke, relaxed into the conversation and we were finally able to get it done.

Finally.

Not a single part of me was surprised by the confusion and questioning I experienced during this process. In fact, I expected it.

But why did I expect it? Why was it ok for me to accept that others couldn’t accept that I’m considered disabled? Why was it ok for the employees to question me in this way? Even further, why was it ok for them to speak to me like I have the IQ of a 5 year-old?

Well, you all already know that I’m not someone who cares about what anyone thinks of me. But what if I did? What if I was someone who could be offended by something like this? Would you have been?

For those of us with Crohn’s, Colitis, ostomies, and other chronic illnesses, we’ve heard it before:

“Well, you don’t look sick.”

No, on the outside, we don’t look sick. In fact, on the outside we look like strong, beautiful people.

Because we are.

But on the inside?

Some of us are in pain, some of us can’t sleep, can’t eat, can’t move, can’t muster up the courage to hang out with friends.

On the inside, we’re not ok.

This is a picture of me that was taken last weekend:

Uncover Ostomy - Photography by Angela McConnell - But You Don't Look Disabled

Guess what?

I was having stomach pain when this picture was taken.

I have been on clear fluids and soft foods all week.

While I know my mother is going to read this and call me and yell at me for not telling her sooner - she saw me this past Friday and couldn’t tell.

Most of the time, you can’t tell.

And none of you would be able to tell if I hadn’t opened up about it.

This is why it is so important that all of us speak out.

It’s important that we teach. It’s important that we help the public understand that there is a lot more than what’s on the surface when it comes to our health. This is why I am always talking about what I have, to remind people that you can’t judge a book by it’s cover.

And you can too.

Whether you take time to explain it to a few family members, or a group of friends, or you open up about what you have to an entire auditorium of people -

We all have a reason to talk about what we have.

Without us speaking out, we will continue to be judged by our appearance and not understood by what we’re going through. We will continue to be scrutinized for having to leave school early, for missing a day of work, for not being able to wear a certain pair of pants, or for not being able to share a certain dish at a restaurant. Without educating those around us about what we’re going through, they’ll never learn.

Because they can’t see it for themselves.

Friends and followers - I have some exciting things coming in the next little while for Uncover Ostomy that I want all of you to be a part of. While I can’t divulge many of the details yet, there is a way you can be involved.

Over the next few weeks, you can educate. Over the next few weeks, I want to see you share.

I want to know why you talk about your #ostomy.

Tweet to @UncoverOstomy, post on our Facebook page, and use #ostomy on an Instagram post.

Tell me why you open up. Whether it is to just a few people or hundreds of people over, I want to see your reason. I want to know why you have joined our cause.

Soon, you’ll get see why….

No, we may not look disabled on the outside, but that’s only because the strength that comes from dealing with our diseases is what shines through most.

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.

An Open Response to the Guy Who’s Upset He Can’t Date Me.

This past week, I received a message via the Uncover Ostomy contact form, in response to the lastest blog post about my Valentine’s Day festivities.

Well, more about who I chose to spend my Valentine’s Day with…

(I’ve bolded the aspects that stuck out, to me, so feel free to skip the rest.)

Dear Jess,
I hope this correspondence finds you well. I wanted to take a minute and share a couple of thoughts about your recent blog post, dated Feb 15th.
Ordinarily, I wouldn’t bother to comment or quip about some stranger’s comings and goings, their life and their “business”…… Because it’s not any of my business, so ordinarily, i wouldn’t care enough to bother, like, what 4?
But reading that Feb 15th blog entry, I felt compelled otherwise….. and how did I stumble on the blog, one right mouse button click too many I suppose…….
Anyways, I just wanted to comment that I found your entry totally heart wrenching and disappointing. As a Jewish guy here in Toronto committed to courtship with Jewish women, I find it painful and frustrating to observe Jewish women who have totally excused themselves from embracing that same commitment, to endogamy. As a Jewish guy, I can’t court whomever. If I do, my offspring will cut off and my lineage severed. My Bubby can’t take solace in the fact that despite her grandchild’s interfaith relationship, the lineage will continue. Jewish Maternal lineage is not a loophole for Jewish women to say, ‘I’ll date whoever and it’s okay, i’ll still be Jewish and so will my kids’ etc. Apart from the sheer falsity of that thought (lol since when does a non-Jewish spouse teach their kids to sing ‘Ma’Nishtana’ on Passover?), the male half of your coreligionist (or co-traditionalist if you prefer) have no such loophole to abuse.
As a Jewish guy, it’s date whoever and sacrifice my lineage, period. And while some guys might be totally assimilated to the point where they don’t know about their Jewish identity, nor care, and thus ready to court whoever they suites their fancy…… for us Jewish guys who want to preserve our identity, we need to court inside the “community” (lol, funny notion), otherwise we face ostracism. No bris, no bat/bar mitzvah for my kids if I marry a ‘Miss French’s’. So we Jewish guys who are committed to endogamy for the sake of preserving our lineage, and note there is nothing racist in the principle of endogamy, sadly watch or female co-religionists (or, co-traditionalist) get involved with whichever guy tickles their fancy, leaving us men behind, either to remain perpetual bachelors or betray our lineage, by default forced forsake the perpetuation of a Jewish identity to the next generation. That’s why I found your post, heart wrenching.
Best of luck in all your career and philanthropic pursuits,
N

Ok, before I get into what I really want to say, let me give you a bit of context.

I was raised Jewish by a Jewish family.

I went to a private Jewish elementary/middle school, I had a bat-mitzvah, kept Kosher, went to synagogue on the important holidays, and I have been fully educated in all Jewish traditions, cultural norms, and history. I have been Jewish for the majority of my life. My dad’s side of the family is “reform,” where they celebrate the important holidays, attend synagogue on the most important days, and keep Kosher. My dad’s sister is actually an Orthodox Jew, and follows all Jewish traditions and rules to the letter. My mom’s side is much more “reform,” and mostly just use the Jewish holidays as a reason to get together for dinner. Besides my mother and her parents, everyone else on this side of my family has married outside of the Jewish faith, but that hasn’t stopped them from recognizing and observing some of the traditions.

My Jewish upbringing is why I was featured in this article, on ShalomLife’s “Top 20 Under 40″ list. It was a wonderful article that said some great things about this campaign. I want to, first and foremost, thank the publication for recognizing me and Uncover Ostomy.

It is this article, that I assume, is how the particular individual sent that email, came across this campaign. (I haven’t, however, determine exactly how he found out that my boyfriend isn’t Jewish.)

In case you were unsure, the point that this individual is trying to make is that, in the Jewish religion, children are determine to be Jewish based on their mother’s religion, so Jewish guys are forced to marry Jewish girls if they want to have Jewish kids. What has expressed here is his disappointment in my decision to date “whomever tickles my fancy,” (aka someone not Jewish) because I am then taking myself out of the group of potential wives for him, and his fellow Jewish brethren.

To that I say: I am offended.  

He’s pretty much implying that I have taken myself out of his potential dating pool, as if I was just waiting there to be chosen.

Ummmmm.

Excuse me.

I can pick whomever I damn choose. Sorry that you don’t have the opportunity to date me? Sorry I’ve picked someone who’s not Jewish, over you? Besides, not a single one of my past boyfriends have been Jewish.

Ok, so, at first, the “not dating Jewish guys” thing wasn’t something I did intentionally. In fact, there have been a number of Jewish guys I’ve wanted to date. Unfortunately, the Jewish boys whom I had grown-up with, and the other boys that I have since met, have never seen me as dating material. Hence, I’ve never really tried to date a Jewish guy.

I was deemed “unfit” for dating, it seems, back when I was battling my Crohn’s disease as a pre-teen. Not only was I isolated from growing up with the Jewish community because I was stuck in a hospital bed for 2 years, but I had become shy and awkward and didn’t fit in. It didn’t help that the side-effects of my medications made me look like a monster. Even after I had surgery, I didn’t know how to act in social situations and I was still overweight. I never meshed with that group, so I didn’t really bother.

It was around this time that I remember seriously thinking about the premise of Judaism, as a whole. It was during those long, lonely days that I sat, in pain, in the hospital thinking “why me?” and “what did I do to deserve this?” In school, I had learned to trust and believe in God, but during this ordeal, I couldn’t really understand why. These thoughts made me question what religion really was all about.

After surgery, however, I went back to my Jewish school and pushed those thoughts aside.

Eventually, I went on to a public highschool, where I was one of very few Jews, so I identified as such. It seemed to make sense to me, and I continued on through to university.

It wasn’t until my second year of university that my Jewish identity started to morph. I suppose it could have had to do with living outside of my Kosher household or even because I didn’t hang out with the Jewish community at my school.. which, after all, was comprised of all those kids that I had never meshed with in elementary school. Whatever it was, the previous thoughts of questioning religion that I had, had, back in my days of being sick, slowly started to creep in.

It was in second year that I had met a boy whom I liked, and we started dating. He wasn’t Jewish, but he was nice and treated me well. He was also the second boy I had been in a relationship with who wasn’t Jewish. It didn’t matter, though, because I knew I was still young and marriage would not be in the cards for a while.

Anyway, this boy and I dated for a few months into school and throughout the Christmas break. It was then that my boyfriend of the time invited me over to his family’s Christmas dinner. In response, I invited him to join me at my family’s equivalent Channukah celebration.

That is, until, my father said otherwise.

I’ll be clear and say that I adored my father, and always will…. but in this moment, everything I thought I believed, changed.

My father said I was not allowed to bring my non-Jewish boyfriend to Channukah dinner. 

He explained that he expected me to marry a Jewish boy so that I could have Jewish kids. He said that bringing this non-Jewish boy into the family for celebrations was not appropriate. He said that he knew this boy wasn’t long-term, but that I needed to start thinking about my future and how I was going to raise a family.

I remember looking at him, stunned, with my jaw brushing against the rough carpeted floor.

This was a man who had always, always, always taught my brother and I to be accepting of everyone. Sure, we went to a private Jewish school, but we also went to a public summer camp, public highschool, and we had non-Jewish family friends, whom we had shared both Christian and Jewish celebrations with. I had been raised to learn about all cultures and religions and to accept everyone for who they are.

And now, suddenly, inviting a non-Jewish person to a Jewish celebration was not allowed?

I reminded him of this. I reminded him of the values he taught me.

And then I didn’t speak to him for 3 days.

To me, religion was the least relevant factor in the person I would choose to spend my life with. Why would I ever want to turn down a guy simply because he wasn’t Jewish? What if I had found the most amazing person in the world, who treated me like gold, and who would do anything for me, but he wasn’t Jewish? I’d have to say “sorry, better luck next time”? Even if he totally respected the Jewish faith? Even he let me celebrate the holidays and share them with my kids? Would it be better for me to end up with someone who didn’t respect me, simply because they followed the same rules of faith?

It didn’t make sense.

If someone loved me and I loved them and we had a happy, healthy, respectful relationship, that was the only thing that mattered.

The views my father expressed made me seriously reconsider why I needed religion in my life at all.

Eventually, he apologized and explained that he knew I was right about the idea of acceptance. He did, however, make sure to mention that he still really, really wanted me to marry someone Jewish, to keep it in the family..  I said I would see where my life ended up. And that was that.

Sadly, less than a year later, my dad died from a rare blood disease at the young age of 46.

And with him, died my need for religion.

It was during his “Shiva” (the Jewish form of a Wake, and lasts a week), that I knew religion was no longer for me. Everywhere I looked, there was something religious. A symbol. A prayer. And my Ultra-Orthodox aunt telling me that his death was “God’s way.”

No it wasn’t.

He was dead, and no part of religion was going to bring him back.

Just like I had been sick and almost died, and the surgeons saved my life.

Just like how religion was not going to play a part in how much love would exist in the marriage I would eventually choose.

And this is where I stand. This is where my journey has taken me.

Journeys are unique. Everyone experiences a different life that contributes to an individual sets of beliefs. I’ve found this especially true while doing work for this campaign, as those who have had especially rough journeys either end up with a lack of faith, like me, or with one renewed.

And you know what? To each their own.

My personal journey has led me to a place where I identify as just being me, and where I identify with an overarching set of beliefs that I do not categorize with any religion. I believe in the tenants of being kind, being respectful, being generous, and being loving. I also believe that others have the right to believe in whatever they so choose.

I, as you all know, very much believe in acceptance for all.

So, as I wrap up this long winded post, I want to say that my own personal journey has led me away from religion, and I believe that it’s ok. I want to say that I also believe that while this may be where I ended up, others end up completely different, with newfound strong belief in a higher power. While those people believe in something different than what I believe in, to me, it doesn’t matter. What matters to me is that we are all happy in the beliefs that we have chosen.

My dad passed away over 4 years ago now, and it’ been that long since I’ve stopped identifying as Jewish. I still go to Jewish family events, I still enjoy the food, I still understand the traditions and cultures, and I even still catch myself saying things like “oy vey.” I was raised Jewish, and it will always be a part of me.

My current boyfriend isn’t Jewish. He also isn’t any other religion. He was raised in a family that believed in another faith, but, like me, identifies with being himself. He believes in the same tenants that I do, of being kind and respectful and loving and accepting, and acts that way towards me. It doesn’t matter if we celebrate Channukah or Christmas, or we do both because we get to spend time with our families. What matters is that we love each other and have a wonderful relationship based on important values.

To the guy who wrote me that email: I am not Jewish, nor do I plan on raising a Jewish family. I do, however, recognize my family history and tradition, and will ensure my future children recognize it. I will also ensure that my future kids understand the religions, cultures, and traditions of all other faiths in the world. I don’t believe in Judaism, nor do I believe in any other religion.

What I do believe in, is accepting others for who they are and that they are happy with what they choose to believe in.

Maybe you should too.

Who Needs Sleep When You Have Netflix?

I’ve recently discovered that the best time to have a Netflix marathon is at 1am in the morning.

I’ve discovered that instead of rolling around in bed, twiddling my thumbs, and thinking about how stressed I am, I can just watch countless episodes of TV shows on Netflix until I literally fall asleep on my computer.

Otherwise, I won’t fall asleep.

I think, if I didn’t have Netflix, or similar forms of entertainment at my fingertips, I could go more than 2 days without sleeping a wink.(If I really tried, I could probably go 3, but I’ve heard people start hallucinating at that point…)

I’ve been having a really hard time sleeping lately.

And it’s not because I’m sitting in the living room and too lazy to get up to go to bed (which, used to be my excuse for staying up all hours of the night…), because I get into bed, every night, as a reasonable time, thanks to my boyfriend. We’re usually all tucked in and ready to count Z’s at around 11pm. He has a full-time job, so he has a reason to get to bed before dawn.

Night after night, we turn out the lights, say “I love you,” and then in about 15 minutes, he’s snoring away while I’m lying there, staring at the ceiling, literally feeling the cogs spinning in my head.

Sometimes, I get up to go to the bathroom.

Other times, I try and close my eyes to meditate.

I even try to count sheep.

Unfortunately, neither the quick trip to the bathroom, the meditation, nor the counting sheep can stop my brain from thinking about what’s got me extremely stressed.

My job hunt. I’m looking for a new job.

If you haven’t seen my endless tweets about how ridiculous the job market is, how annoying job hunting can be, or how I’m just ready to be hired, you may not have known. But, if you have seen them – I’m sorry.

Job hunting is hard. Between working at my current job, writing constant cover letter drafts, filling out applications, doing phone interviews, and showing up for in-person interviews… it’s crazy.

And I don’t know when this started to be a thing, but I have job, after job, after job asking me to do assignments for them! Like, they’re asking me to do work that they would be hiring someone to do.. but getting myself, and others, to do it for free. I mean, don’t get me wrong, I get the concept of it, where they want to see if I’m competent and what-not, but the type of work I’m being asked to do, and how much of it, is a little ridiculous. And, from what I’ve heard recently from a friend who just hired someone, the assignments are misleading – she hired someone who cannot do shit, despite completing the interview assignment properly.

It’s also insanely hard to get people to even take me seriously because of how young I am. If I’ve learned anything from my current job, it’s that it doesn’t matter how old you are, it’s all about what you know – and I know quite a lot, apparently. However, getting someone to take the time to even give me a chance to prove this, is turning out to be a difficult task.

Another huge concern of mine is the fact that stress contributes to Crohn’ disease flare-up… Well, stress contributes to a lot of health related issues, but in my case, Crohn’s is a huge concern. I haven’t had too much “tummy trouble” just yet, but if this continues, I may not remain as lucky.

Sigh.

I know I shouldn’t complain. I’m in a much better position than others that I know. I have good work experience, a great education, and lots of networking connections who are helping me out. Despite all this, I’m still extremely overwhelmed and severely lacking sleep.

While the boyfriend snores away, I find myself lying awake, wondering whether or not I’ll get a job I enjoy and whether I’ll get one that pays me enough to cover my bills.

And then I start to wonder if I’ll even get a job at all.

I wonder if I might become destitute.

Then I start picturing where I’ll have to live.

And then, I start wondering where I can find cardboard boxes big enough to use as a shelter for under the bridge I’ll inevitably end up calling home.

Without being able to stop, I begin to imagine my new friend Bob who used to be a successful investment banker who lost millions of dollars, was fired, and ended up under the same bridge, to which he now helps the other bums under the bridge with their investments of old beer bottles and pop can tabs to pay for the swimming lessons for his imaginary pet Lobster, Al.

And then somehow, I wake up the next morning.

Body half off the bed, drool coming down my mouth, and the blankets on the floor, I look up to see my boyfriend telling me it’s time to start the day.

Wearing his nicely fitted dress pants and his perfectly pressed button down shirt, he kisses me, still in my pjs and hair in a messy bun, goodbye, while he goes off to work hard at his great job.

I, on the other hand, move myself to the couch to continue my job hunt so that I won’t end up trading bottles to pay for those swimming lessons for Al.

Frequent Flyer Disease

Ahh Saturday. A day to sleep in, relax, and not do a damn thing. My favourite day.

A day I’ve hardly seen in the past few weeks.

And holy hell am I tired.

——–

I remember the days when I couldn’t wait for the weekends to hang out with friends, party, and stay up really late, and  travel – basically a few days without sleep. It was great.

Now, I can’t wait for Saturday so that I can stay in my pj’s till 1 in the afternoon.

For me, the past month and a bit has been full of traveling and very little sleep. From Chicago, to London, ON, to Ottawa, and NYC, I feel as if I haven’t stopped moving. I had a bit of time in between each of those trips which were mostly spent to go grocery shopping and clean (you know, adult things.)

Don’t get me wrong – I love traveling. I love going to new places and seeing new things and meeting new people.

Like, Chicago. I had never been before, and neither had my boyfriend, so we decided to make a trip there for a few days. We stayed with some friends, who graciously offered their place, and we had a great time. We did a lot of touring and I saw things I had never seen before (like the Bean!), went to a really fun museum (ugh, yes, I’, a nerd) and ate very, very well.

Only a few days after that trip, we went to London, ON so that I could speak on behalf of Uncover Ostomy at the Crohn’s & Colitis Foundation of Canada’s Education Symposium. Since my boyfriend had just moved to Toronto from London, we took the opportunity to spend the night before with a bunch of his friends before waking up early the next day for the event. Despite the lack of sleep, it was fun to hang out with his friends, and a pleasure to speak to such a great group of attendees. My brother even stopped by to support (since he lives there.)

Shortly after that trip, I headed to Ottawa, ON – another place I had never been – to speak about Uncover Ostomy at another CCFC Symposium. While I was only there for about 24 hours, I got a glimpse of the downtown nightlife and went out with a few volunteers from the event. Waking up early, once again, I made my way to the event and spoke to another amazing group of people.

Then, for what seemed like only a few days later, I headed off to NYC for a few days. It was great to visit the place I once lived to see some of my friends and even more exciting to meet one of my idols, Morgan Spurlock.

Unfortunately, my NYC trip wasn’t as fun as it could have been because I had come down with an infection. This was not surprising, as on my immediate return from Ottawa a few days before, I had been struck with a stomach virus. I clearly hadn’t recovered enough from that virus, as my body wasn’t able to fight off coming down with another sickness.

I think they call this Frequent Flyer Disease.

It’s known that when you have Crohn’s disease, and that when you’re missing a colon, your immune system is severely decreased. This is something I’ve been used to for most of my life and haven’t really had to deal with. I’ve been able to travel around the world, party, and barely sleep without any problems.

However, it’s becoming more and more apparent to me that as I get older, so is my body. And I guess I’m getting more and more susceptible to this “disease.”

Maybe it’s just being 24. Maybe it’s just the fact that I’m not the spry 19 year old like I used to be. I mean, do other 24 year-olds get sick from lack of sleep? Anyone? Beuller?

Ugh, I doubt it.

Fortunately, as I notice the decreasing ability for me to fly somewhere new every weekend, I’m actually happy to not do it as much. I like waking up late, bumming around, and relaxing after a long week of work. I mean, it’s Saturday, at 1:30pm, and I’m still in my pj’s hanging out with my boyfriend – and I couldn’t be happier. 

I guess this is what maturing is all about.

While I’m still recovering from the infection I got in NYC, I am still very happy with the past few weeks. Sure, being sick sucks, but experiencing all the things I’ve been able to experience from traveling definitely outweighs the sick, and I’m not going to stop.

Crohn’s hasn’t stopped me before and it is certainly not going to stop me now.

I just need to figure out how to, you know, not die, in the process ;)

Happy weekend, everyone. Enjoy it.