Keep Calm and Gutsy On

I recently met a girl who has IBD who said that only a few people in her life, outside of her family, knew about her diagnosis. She is wonderful and amazing and a good person, and it is absolutely her choice who she wants and gets to tell. But it made me think, who in my life doesn’t know I have IBD?

To answer my rhetorical question, there’s virtually no one that doesn’t know about my IBD. I guess that’s what happens when my profile picture is of my ostomy (sarcasm implied), but seriously, the people that don’t know I have Crohn’s are probably the same people that don’t know my last name or things like that. 

Gut Inspired’s topic of the month is relationships - so I thought I’d take a gander at a post on that, since my posts rarely (if ever) revolve around acting my age and thinking about boys (unless, of course it’s Patrick Dempsey than I talk about this all the time). So here goes - deep breath!

I just read a research article about social competence and kids with chronic illnesses. I wrote to the author (my friends know I’m a researcher groupie and if emailing people were a sport, I’d be a record holder) and we were emailing back and forth. His interest was more in children who had neurological damage and social competence, my interest was more in socialization with chronic illness. I was saying to him that I went from being a 12 year old to being 80 years old and that I largely missed out on interactions with my peers. And because of this I straddle the line of young person/old person and perhaps even the socially unaware person. By socially unaware I mean that I have absolutely 0 skills in flirting or being able to recognize flirting (I don’t just write this because my parents read this - hi Mom and Dad!), and not that I stand in the middle of the grocery store aisle unaware of the passing carts. 

At heart I feel like I’m still 12 years old and waiting for junior high to begin, when I thought there’d be boys asking me to dances and so on an so forth, all of those things that you see in the movies. But life isn’t a movie and the only men in my life have been old guys in lab coats. Maybe also in part because of the nature of the illness, it’s a private part of your body that suddenly everyone in the medical world has access to just because of their profession. 

This is likely an unfair statement - however - I think there are a lot of great men, but not as much great young men, it’s a growing process for all of us. It’s not that I don’t think I’m worthy of love or some other Oprah/Dr. Phil segment, but being in a relationship where a partner has a chronic illness is something to consider. Even though I’m doing great right now (knock on wood), we all know the pendulum swings at will and we don’t know we’re sick until it’s knocked us flat on our backs. And I don’t care about the ostomy, it’s certainly the kind of thing that you’d need to show someone to explain it, but that’s fine with me, as they say, those who mind don’t matter, those who matter don’t mind. Yet - it doesn’t make it easier finding that person.

Step number one is finding a good guy. Clearly. I can’t have this imaginary conversation and be accepted if there’s no one on the other end. And part of the vacant boyfriend position is residing in the hospital for so long - and unfortunately I don’t consider the old men on the floor as part of my dating prospects (though in that case it could be like the Medical Bachelorette). I think honesty  in the best thing - but with that said, dosing is important (aka I will need to restrain myself from explaining a protocolectomy on our first date, whoever this poor soul will be!). I so desperately want someone to say to me that it all doesn’t matter, but I know it does. I would never want a relationship - of any kind - to be focused on being sick. Because I am not sick. I have a chronic illness, but that’s not who I am. 

I want the whole thing - the white picket fence, the five kids, the dogs playing in the yard. But whoever I’m supposed to be with is out there somewhere in this big wide world, and who knows, maybe he’s even reading this tonight.

Jennie

Gelato and Big Red Buttons

Ciao!

I am writing to all you beautiful gutsy people from the breathtaking land of Tuscany, Italy.

Before I left, I was literally telling everybody and their mom that I was going to Italy. A touch annoying? Probably – regardless, almost everybody who I spoke to about my trip responded with some variation of this sentence, “Oh my goodness – the gelato!!! You must eat your body weight in gelato!” I usually responded with a smile and a polite nod followed by, “Yes, I hear it is to die for”.

So as my mom and I walked around the cobblestone streets of Cortona last night, as expected, I saw people eating gelato on every step, every stoop, every patio, long story short – it was everywhere. My mom and I entered one of the gelato extravaganza shops (which I am sure is the formal name for them). I asked the lady behind the counter (who spoke spot amounts of English) if any of the flavours were made with fruit ice (knowing the slim chances of them having a lactose free option), instead of milk. Looking like a deer in headlights, she picked up the phone, muttered some Italian and quickly hung up the phone. Now, it could have been the major language barrier between us, or the fact that I was asking for ice cream with…well, no cream. Oxymoron anyone?

Now here is the thing, in my everyday life if I can get my hands on lactose free ice cream – fantastic. But it is not something I ultimately crave and seek out anymore. But ever since people have started on with this life altering gelato experience I am supposed to have in Italy, and now seeing it, it is all I think about. My brain (well, more like my intestines) are telling me no, but my mouth is telling me yes.

It’s the negative suggestion effect. This is the idea that a suggestion or command NOT to do something will actually increase the likelihood of somebody actually doing it. A friend of mine introduced this idea to me a few months back, and it cannot be truer. Picture this – you are sitting in a room, maybe with a friend, maybe alone. Next to you there is a large red button on the wall and underneath the big red button there is a sign that reads, “DO NOT PRESS THE RED BUTTON!”

What is the first thing that you want to do when you read that sign? YOU DESPERATELY WANT TO PRESS THE RED BUTTON!!! AM I RIGHT?!

I’ve decided it could probably take up a chapter in the story of my life, and a lot of IBD-ers lives.

“Taylor, don’t eat salad!” What do I want to eat? Salad.

“Taylor, don’t eat popcorn!” What do I want to eat? Popcorn.

“Taylor, don’t eat fresh fruits and vegetables!” What do I want to eat? Fresh fruits and vegetables.

“Taylor, don’t steal the fancy three ply toilet paper out of that washroom for your house at school!” What do I want to do? Steal the toilet paper!!!

Oy Vey!

So hey, do me a favour and don’t eat any bananas!?

Ciao a tutti voi ragazzi e ragazze Gutsy!

Taylor

P.S. Yes, I used Google Translater for that departing statement. I haven’t picked up that much Italian...yet....

P.P.S. Feel free to offer up any lactose free gelato advice?!

In Awe

I made it! After three weeks spent in a theatre, some new friends and one performance later I am officially done my undergraduate degree! #thoughtitwouldneverhappen

In order to celebrate this wonderful occurrence and the Victoria Day long weekend my best friend, Megan, drove down to our house at school to visit me for a few days. We were lucky enough to have sunshine every single day and spent the weekend socializing with friends, catching up, hiking the stunning trails that the Niagara Region has to offer (they should be paying me to promote the region) and eating fantastic food.

Today, after a beautiful afternoon spent at the Niagara Glen soaking up the sun and hiking the Niagara River we worked up an appetite and decided to stop at Subway on the way home for some grub. As we sat at a table in the middle of the restaurant eating our subs, Megan looked at me and said, “Tay we have literally just hiked and ate this weekend – AWESOME!”

As I sit here on my couch writing this blog I have food in my belly, a fresh sun kissed glow on my shoulders and I am feeling profoundly happy - it’s that crazy ‘is this real life?’ kind of happy. It is just so unreal to me - a year ago having a weekend packed with hiking up waterfalls, down escarpments and eating delicious food would not have been possible, let alone so enjoyable.

I don’t have any profound quotes or cleverly worded sentences to sum up what I am feeling – other than I am in awe.

No colon and still rollin’ peeps!

Peace out and happy Victoria Day to all you Gutsy folk (and the non-gutsy ones too)!

Taylor

From this....

... to this!!!!!

Dog Days

After 12 hours and an endless playlist of sing-along-worthy tunes, I found myself and my parents pulling in to our driveway in Nova Scotia - the official welcome home to Canada. And while the moment still seems surreal as I type from the desk I had in high school and glance at the yearbooks on my shelves, I know summer is just beginning and the reality that I’m no longer at school will sink in soon enough. 

Virtually every semester since beginning college, there’s been some health emergency/issue/drama that’s taken me out of the game so to speak. So this was arguably the first semester that I was really in class all the time and able to do things with my friends. Example: I was walking home from studying around 8:30 at night the other week when I ran into a friend and he invited me to eat with his friends at a dining hall. I was shocked when I heard myself agreeing and heading off - not worried about getting sick or missing a medication time or even just being able to have the stamina was a surprise. And I laugh now and think, is that what college is supposed to be like?

This morning I went for a run with the dog to survey the neighborhood (Criminal Minds style, thank you very much). As I was literally rounding the bend home, I ran (well, not actually, I managed to stop myself!) into a neighbor. “Oh Jennie,” she begins, “you look like you’ve gained some weight”. This comment from her makes me laugh, because it seems to have no grounding in reality for I’ve been the same size the last hundred times I’ve seen her and yet she recites this each and every time. It’s like being told, “You look so much better!” Like thanks, what did I look like before? I’m the first one to admit cringing at pictures of myself when I look emaciated and laughing at my pathetic Prednisone pictures, but when I’m 20 years old I don’t need a comment to imply how utterly crappy I looked before - I’m aware, thanks.

It all comes back to this - beyond the overly hot and humid and desperate days of the middle-summer when not even Antarctica would have water cool enough to stabilize the temperature - we as IBDers experience the dog days of our lives when our illness flares. It’s not being sluggish by choice, not giving up or giving in, just living with the reality of the body we’ve been dealt. And that’s not meant to sound harsh or laissez-faire, but rather a validation of those feelings.

My Mom asked me this morning, “Do you ever just relax?” Answer: no. When I feel well, there’s too much I want to do with my life and my time - latest goal: do a triathlon (now that I’ve said it here I’m stuck with this!!) - that I have no time to waste. Things do get better with effort and time and patience and support and hope. It’s not equal, but what you get out of life is directly related to what you put in to living it.

The summer is here - grab some lemonade and a pool noodle and get going on enjoying it. Remember to take a break, you deserve and more importantly you need it. And don’t forget that no matter what the challenge, don’t rush the time that it hurts, but you can start climbing that mountain to overcome it today.

Jennie

Display Case

If you’re looking for my dorm room, you won’t have a hard time finding it. Besides the unmistakable clue of my name, the dead-giveaway is the IBD awareness poster on the door. Of course I did.

And while I’m all for awareness and raising the profile of IBD, sometimes I have a slightly negative experience with professing my guts (or rather, lack thereof). Let me paint the picture for you: I was hungry, it was late, the dining hall was closed. I meandered downstairs to get a snack from the cafe. I ran into a friend I had recently met, and while I think she’s super nice, we don’t know each other well. This translates into her not knowing about my IBD. Awareness has to take place at the right times - it’s not something to say just to say, not for those awkward moments of silence, you have to have a sense of the audience. 

Back to the scene at hand. At the cafe, tummy grumbling, searching for food, chatting with a friend. With finals looming, it was the natural subject of our conversation. So luckily I only have one final on Thursday so I’m currently enjoying endless reruns of Alias - and okay, studying too, I promise - and I was jokingly saying that I wanted to be Sydney Bristow (come on, being a kick-butt spy would totally rock). As we’re talking away about wanting to be super secret awesome spies, I heard my name and saw my RA.

“Jennie,” she said, “it’s so nice to see you out and about and alive and out of the hospital.”

Uh oh.

My friend turns to me with a ‘WHAAAT?’ expression on her face. Confession time. “Oh yeah,” I said, “I have Crohn’s and last semester the hospital was my secondary residence.” And when the moment of truth came, she didn’t even blink and said, “My cousin has that.” Ah, relief. We then were talking about that and meds - in the middle of the cafe I might add - and finally my ostomy. “Your what?” was the response. I pulled down the top of my sweatpants to show her and quickly followed it up by adding that I wanted to be the first spy with a bag. A white lie? Perhaps (though it would still be awesome). But I felt the need to be especially chipper and upbeat about it since the moment had been thrust upon me. 

I felt like I was on display, being prodded for a story before I was ready to share it. I’m more than willing to share when given the chance, but I dislike when others (even when the intention is good) feel the need to over-share and expose my medical background. 

Awareness only works when you’re a person first. You have to first know that my favorite color is purple, that I love to lip-sync as I run (a confession I might want to keep to myself...), I could eat crate-loads of bananas, I would faint if I met Patrick Dempsey out of sheer thrill, I truly love school and learning, I want a big family, and so on and so forth - you get the idea. 

You have to know that first before you can understand my life with IBD, before you can understand that IBD is just a part of me and not a defining characteristic. I am me before I am anything else and I’ll never give up that right.

Jennie

Tick Tock

I swear I just got to BU.

And yet, today I finished classes for my junior year. Done. Gone-zo. Over.

What just happened???

I admit, the relief of class time expiring and the (small) sigh of relief (until the realization that finals still looms around the corner) that washes over me when everything is over is fantastic. But then again, I only have two semesters left after this one before I’m not-so-gently tossed into the big, wide ocean that is the world. 

At the end of one of my last classes, our professor gave us a sweet, albeit sappy, speech about achieving our dreams, then left us to fill out the course evaluations. One girl who’s graduating got up and ran out of the room, crying. She came back in after a moment, wiped her face, and said, “I just realized I’m graduating.”

I had smiled and perhaps said some platitude, but the thought hit me when I was walking home from class. It was a calm Bostonian night, a slight chill in the air, but the big towers downtown were twinkling, the sheen of the Fenway lights glowing under the Citgo sign. And all I could think was that I was leaving in under two weeks. 

Only a year before I had been nearly imprisoned to the hospital, better yet, fall semester before I virtually lived there. When I think about that, my brain wants to explode, I think, how did that happen? How did I survive? I know I live with a chronic illness, but the constant up and down sometimes makes me feel like I don’t know which way is up anymore. But after the bizarre cause of my obstructions was identified during my surgery in January, life has been a little less shaky to say the least. 

The only way I know how to describe it is to borrow from ‘The Incredibles’. Near the end of the movie, they’re driving in a limo back to their house and little Dash is talking on and on and on (at the speed of light) about how awesome their adventure/trip/saving the world was. At one point he says, “AH! I love our family!” - with his arms out wide - and falls back on the seat. That moment and feeling of ‘I’m right where I belong and things are awesome’ is how I feel right now.

Life moves fast, and before you know it, you’ll blink and you’ll be 83 years old. Well, okay, not that fast, but you know what I mean. Especially when we’re sick, we tend to spend so much wishing time would pass, wishing to fast-forward to that small, wonderful space that is remission. 

Nothing is guaranteed, and we all know this. But I will do my best to appreciate the healthy times I’ve had, and perhaps more importantly, the time I have right now. 

Tick tock, there goes the clock - I’d better get going - I’ve got some living to do!

Jennie