Shelby's Nanaimo HnW Speech 2011

The following speech was delivered by Shelby at her HnW in Nanaimo, BC. The picture is of Shelby's team - The Party Poopers!

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I would like to start by saying THANK YOU. From the bottom of my heart thank you for being here today to help spread awareness and raise the well needed funds to help bring us one step closer to the end of IBD. For those who don’t know me, my name is Shelby Milholm and I am your Nanaimo Chapter vice-president as well as your Youth Advisory Council Representative for BC and the Yukon. I have been involved with the CCFC for a few years now and I have to admit that working with this foundation and all of the amazing people who are a part of it (and who show up to demonstrate their support at events like this one today) has been very empowering, encouraging and truly rewarding.

The group I am mainly involved with, the YAC, is a selection of 9 youth from each region of our country (with my self being the representative for our region.) The majority of individuals diagnosed with IBD are under the age of 30 and more and more children and youth being diagnosed so it is important that we voice the needs of our youth. The YAC is our voice! The purpose of our group is to come up with ideas, suggestions , tools, and tips to help youth become more engaged in our mission to find the cures. Our main purpose is to help show youth that we play a very important role in spreading the awareness about our diseases.

One of the most exciting things we have been working on this year is a new book that we have recently published called “Tales from the Throne”. The book is a compilation of short stories from youth who have been in your shoes. There are stories of triumph and inspiration as well as many very useful tips to help you show your disease who is boss! There are stories of personal experiences, a parents perspective and many tips and stories from past and present members of the YAC to help with things from every day life, to traveling the world with IBD. There is even a story from yours truly.

I have brought a few copies of the book along with me today so people can take a look at it and I have a few copies with me to sell for $15 each with the proceeds going directly to research. So please come talk to me at some time during our day here if you are interested.

Reading the stories in our book and standing here today seeing all of you, out here, to fight in our mission to find a cure for this disease, my disease, is truly inspiring! We are all here today to accept that we or someone that we know has inflammatory bowel disease, but we have proven that we will not accept that nothing can be done about it. Today we are taking the metaphorical steps to bring an end to the pain. We are raising our voices and raising awareness. Each year I am blown away by the support that we are shown at the heel n wheel a thon. Seeing each of you here gives me hope. Hope for a brighter future. One where we will no longer need to walk to find a cure, because we have found it! And for that I thank each and every one of you here today.

In the words of Charles Dickens, we “walk and be happy; walk and be healthy. The best way to lengthen out our days is to walk steadily and with a purpose."

Today WE HAVE A PURPOSE!

You're Right

When I was diagnosed with Crohn’s, the words meant nothing to me. The word ‘Crohn’s’ seemed as harmless as the word ‘banana’ and I didn’t think it would make a different in my life. It didn’t matter to me until I was sitting in a room full of doctors telling me that I was chronically ill and offering treatments that scared me to my core. I can remember my twelve year old self trembling, my parents reached for my hands, but instead, I stood up - full of fury and fear and confusion - and turned and left the room. And as soon as the door clicked close behind me, it was like it had never happened, like I could just run away where no one would find me and I would never have Crohn’s.

Years later, I sat in a hospital bed crying as my GI laid out new treatment plans that I disagreed with. Trembling again, this time all of 16, I cleared my throat and ordered him to leave my door. It took several times of me repeating myself before he obeyed, but I wanted him out. I wanted him to go away, my disease to go away, my life to be the way I wanted.

They say that when we are attacked by something - be it a bear or an illness - there’s a flight or fight response, to run like the wind or to stay and fight. I am not an escape artist much to my disappointment, and couldn’t flee the pain and disease raging inside of me, and had no choice but to stay and fight. The fighting is tiring and forced, it’s not a battle I signed up for, I was thrown into a war with a thousand people with swords running at me while I merely had a toothpick to disarm them with.

But living with IBD is as much about living as it is about fighting. A few days ago, I took my dog to the park to run around after dinner. There was no one around, just me and him, and he chased the ball around the field as the sun set and the sky grew grey and freckled with pink. I sat down and closed my eyes, wanting the world to stay exactly how it was, whole and mysterious and beautiful, as if I were exactly where I was supposed to be. A very dear friend recently said “you have a right to live a beautiful life.” It seemed so obvious, and yet, completely novel and revolutionary. It’s not only something that I should have, it’s my right to have a fully amazing and fulfilling and beautiful life. Yes, I may have Crohn’s and I may have an ostomy, but I’m damn well going to have a beautiful life to go with it.

And so I challenge you too to live a beautiful life. Stand and fight for your life, live it, love it, and it will be most beautiful one you could have ever imagined.

Jennie

Dear Stacey

When I was in the hospital for the month of April, I had begun my pilgrimage in the ER at 2 AM. And being triaged, IVed, shot up with narcotics, retelling my history to every doctor and nurse, putting in my NG tube, I was finally taken up to the inpatient floor by the next afternoon. I was dopey from the drugs, in pain and exhausted, but I felt a sense of relief in finally being in a hospital bed. My nurse introduced me to my roomie-to-be, earlier posts have called her Stacey so we’ll stick with that. She smiled at me, introducing her husband who sat beside her, and asked me the preliminary questions - how old I was, where I went to school, and how I was feeling. Stacey and her husband showed immediate interest and that seemed to be that as I drifted off into a drug induced slumber.

Each day, Stacey and I would talk through the patterned curtain that divided us, her husband would tell me jokes and funny stories. At night, Stacey would turn her TV to the channel that had calm music and a moving picture of the stars. It became a tradition, the two of us watching the stars grow and shrink as we whispered about our lives, the things we had done and the dreams we had. Yes, it all sounds very slumber party or fairy tale-esque, but they were the little things that passed the time, the markers of the days gone by and the closer we were to being home. One morning, my nurse came in and told me I’d be switching rooms. I panicked a little - why did I have to move? She dropped her voice and said that Stacey had an infection and had to be isolated. I frowned. I understood but it wouldn’t the same in my new room next door. The next day I dragged my IV pole to see Stacey, blissfully ignoring the isolation procedure. We would send messages back and forth via nurses, and when she was being discharged, she got a nurse to ask me if she could have my email address.

And so, for the past two months, Stacey and I have sent daily emails to each other. We talk about just about everything and anything, and even though there’s at least a 40 year age gap, we help one another when it feels like no one else understands.

Therefore, this is a thank you. A thank you for everyone who opens their hearts and their lives to me, to other IBDers, to those who need support. Life is not a solo sport, and we need people cheering for us, especially those who are in the same race themselves. Being understood and supported and encouraged is empowering, it makes me feel so good about myself and my future. It’s like singing loudly (and really badly) in the car to my favorite songs, or miraculously finishing a half an hour jog, or even having that feeling of wanting to be no where else but where I am. It’s reassuring and reaffirming and makes me believe that I can really do anything.

They say things happen for a reason. I think that things happen, and then those of us who want to move on find reasons to make our experiences - however painful - worthwhile. My April hospital visit tested my sanity and as much as it was a challenging and painful experience, I met Stacey. It’s funny how two people can be thrown together in a room and become life long friends, I would never have known her otherwise and yet because of our shared hospital room, I will never forget her.

Never underestimate the power of saying hello. Never underestimate the power of a smile. Never underestimate the power of an email.

But most importantly, never underestimate the power of yourself.

Jennie

New Years 2011 Goal #1 complete - cycling 200km

Hi Gutsy Generation,

Its been quite a while since I last wrote a blog entry - I missed you guys.

I'm happy to follow up with you and share that I successfully completed the 200km bicycle ride for cancer. I raised over $3400.00 and did this for my sister. Courtney, my younger sister and best friend had stage 3 cancer a few years ago in her final year of highschool - she's moved me in ways I'll never forget... and why we both ended up with challenging conditions?... I do not know, but its pushed us to strive for things - big things - like cycling 200km from the CN Tower in Toronto all the way to Niagara Falls together this last June 10 weekend!!!

Here is my page that tells more about Courtney's story with a picture of her - http://www.conquercancer.ca/site/TR/Events/Toronto2011?px=1790375&pg=personal&fr_id=1361

(Picture 1: Courtney; Picture 2: Myself and Courtney in Hamilton, ON after cycling up some tough hills along the escarpment; Picture 3: Niagara Falls - We Did it :) )

I really don't know how it happened. I've been trying to pay closer attention to my nutrition - to see what foods work and what dont... its been a struggling experience... because if you toss stress into the equation, that makes practically every food un-digestible ... and sometimes the minute stresses of just trying to watch what you eat is enough stress to tip the scales....

The day before the cycle, and the week before the cycle, I wasnt feeling too hot - I was even second guessing myself thinking - "why the hell am I doing this? Why the hell am I putting my body through this? Did I think I was healthy enough to do this?" . I had a huge pit in my stomach while packing extra clothes and getting my bike ready and my water bottle filled up with electrolytes. The morning of the Ride my brother drove us down to the CN Tower, to the Ex grounds and Courtney and I walked our bikes to join the crowd of people also participating in the Ride. I kept thinking in my head " ok... im here now... and im only going to go until I feel I can't go anymore - Im not going to push myself."

Courtney was in the opening ceremonies. She was amazing. There was another lady sharing her recovery story from colon cancer - and she was there RIDING THIS YEAR THE 200KM ALSO! Go Her!!!! Courtney, along with 3 other cancer survivors together walked a bike down through the crowd of people for all those with cancer and/or touched by cancer. I was at the beginning of the crowd and when I saw Courtney, with her helmet, and her bike gear walking the bike towards the starting line with those 3 other cancer survivors, my heart poured out and I found a powerful strength come from deep inside me. I thought about her and how strong she was during her treatment - while loosing her hair, and going to her highschool prom during chemo, and making it to Camp Ooch (Kids Cancer Camp because at the time she was 17 years old and was able to be treated at Sick Kids Hospital where they have great camps like this for kids), and making it through radiation... and then starting university right after, and becoming a Big Sister, and volunteering, and joining her university cycling club and.... being filled with love and peace everywhere she goes, shining positivity, ambition and kindness to everyone she meets and everywhere she goes. As tears poured from my eyes, I let my heart lead the way, and as I can barely believe, together, Courtney and I completed our 200km cycle for cancer and we crossed the finishing line, with the beautiful sun shining, and felt the mist from Niagara Falls, I felt immense gratitude for the health that I do have - even if its not 100% perfect. But like many others, I chose to do the best I could, and although we don't always cross the finishing line - that part doesn't matter: ITS THE JOURNEY THAT MATTERS MOST.

Hugs,

Ash :)

Next goal: Aug 1, 2011 - The Death Race (125km run through the mountains as part of 3 man relay) in Grande Cache, Alberta... I'm going to do my best, whether or not I cross that finishing line.

I'll Cry If I Want To

It’s not my party, but it’s definitely my life, and I’ll cry if I want to. Let me be clear in separating my latest woes: ostomy = amazing, partial blockages from adhesions = annoying and painful and really frequent experiences. And so this past week, I found my belly stirring with my trademark pre-blockage symptoms of pain, decreased output, and nausea. I can keep it at bay for a while via a liquid diet (so not thrilling), keeping active, and heat bags. But sooner or later, my adhesions will fully wreak havoc and send me to the ER.

Thursday night was my first stop in the ER. I walked up to the triage desk, the nurse asked me why I was there, to which I replied, “I have a permanent ileostomy from Crohn’s Disease and I’m having a partial blockage.” She looked up at me and asked me to repeat it. I understand that I’m not having a heart attack or bleeding all over the floor, but I hate waiting in those waiting rooms while everyone gets called ahead of me while I wait not so patiently doubled over in pain and frustration. But finally they did call me and off I went, journeying back to the medical world. I had tried to beat the blockage to the punch, before my output was non-existent but while my pain told me it was coming. Traditionally an NG tube to decompress my stomach or being NPO will do the trick, but the ER doctor - who, in fairness did seem sympathetic - wanted to be conservative and gave me some fluids, some morphine, and sent me home on clear fluids.

That was the first mistake. As I learned last summer especially, clear fluids cannot provide any nutrition and exhausted me further. I was too tired to get on my computer and interact with the world and instead slept away the days beneath my quilt moaning. I woke up in the middle of my night to my phone buzzing with the arrival of an email and habitually put a hand on my bag. Flat as a freaking pancake, aka time to panic. No matter how much I drank and how many popsicles I munched, my ostomy refused to fill up. So I survived for a day and a half before I was waving the white flag again. Refusing to wait in the ER again, we arranged to meet the GI on call. Little did we know, we had to still wait for an hour in the waiting - my Mom and I were not so gently introduced to ‘Intervention’ on TV - before we saw anyone.

The whole experience left much to be desired. No success in trying to get bloodwork left me with a black and blue left arm since my right arm has clots and they can’t poke it. The GI doctor - fellow, not attending - was nice enough at first sighting, but refused to give me pain meds (as narcotics slow down your gut) or do another Xray or more testing. This may sound arrogant on my behalf, but I didn’t go for their opinion, I wasn’t asking, I was telling them what’s wrong and how to treat it. But no. They wouldn’t dare listen to me. After crying to my Mom after the GI left about how frustrated I was, the nurse called the GI back to talk, thinking this might get him to order an NG tube or perhaps listen to me. He walked in, and you could tell the battle lines had been drawn, me versus him. He refused the tube. He refused giving me pain meds. He refused to ‘indulge’ me in my ‘coping mechanisms.’ Excuse me, but the last time I checked, I was living in my body and know that if I have a blockage and my ostomy stops working, it’s darn right dangerous and I should get to an ER. I was so deeply offended by him that it left me speechless, and I’m hard to leave speechless. And so eight hours, two liters of fluids, bruises and blood, and my advocacy responsibility called into question later, I was on my way home.

Blockages, like tears and many other things in life, come and go. I’m finally on the mend - again - but still find myself seething with annoyance and frustration. I hate when people try to use emotions against me, because at the end of the day, it’s facts for them but it’s my life they’re determining and yes, I’m going to cry when I’m upset and in pain. If I didn’t, then I think something would be wrong with me. That GI didn’t know me, he doesn’t know how I live my life and how I fight to have it in spite of my disease. He doesn’t live in my body and doesn’t know the agony it has endured. It can be easy to shut up around doctors like that when you feel like you’re getting no where, it happens to the best of us, but we have to stand our ground and speak our minds. So it might offend a doctor, it’s our lives and we have to make the best decisions for ourselves. We should be able to cry when we need to and speak our minds and be genuinely listened to.

All I have to say is, it’s my body, and I’m going to do what’s right for me, thank you very much.

Jennie

The Things That I Know

There are many things in life that I admittedly have no sweet clue about. But when it comes to IBD, I am an expert just like everyone is with their own bodies. And so, here is a list of the things that I know about life.

1) Being told “everything happens for a reason” or “what doesn’t kill you makes you stronger” is NOT helpful.

2) Half-ply toilet paper should be illegal and all violating restaurants, hospitals, and schools should be charged and made to use Charmin extra-strong.

3) Crohn’s is not spelled CHRON’S - in fact, ‘Chron’s’ is not a disease at all.

4) Ask for anything when you’re sick. After years of writing ‘puppy’ on the grocery list, my parents finally caved when I got IBD.

5) If you want to get six months worth of gifts, have your birthday in the hospital followed by having an organ removed (an appendix will do). It worked for me.

6) Never, ever, ever complain about a full ostomy bag or a leak. A full bag means that your system is working properly, an empty bag, that’s something to freak out about.

7) Use clear mascara when in the hospital or in situations where you might cry. You’ll still look great, but won’t have black smudges when you begin to cry.

8) Leggings are a girl’s best friend.

9) Always bring a book to the hospital/appointments.

10) Always charge your iPod before going to the ER. You never know how long you’ll be there.

11) Do what you love. The feeling of being alive shouldn’t be wasted for a nanosecond of our existence.

12) Walk before you jog, jog before you run, or you’ll have an asthma attack.

13) Say ‘thank you’ when thanks are due and ‘I love you’ at the end of each phone call with the people you care about.

14) It’s always best to laugh so hard that your drink comes out your nose.

15) IBD sucks.

16) The CCFC and the Gutsy Generation are awesome.

17) Grey’s Anatomy is the best show ever. (But sorry sister, Patrick Dempsey will not leave his wife and children to marry you, no matter how much you’re in love with McDreamy)

18) The people who help out willingly when you’re sick are doing just that - helping out by their own free will. There’s no need to say “I’m sorry” to them, they love you and they want to help.

19) Poop smells bad, that’s why there’s Febreeze.

20) A dog will always be excited to see you when you come home.

21) Soy cheesecake is delicious.

22) Never underestimate the power of a hug. It might just make your entire day.

23) ‘The Sisterhood of the Traveling Pants’ is a must-have for those sick days stuck in bed.

24) Never get overly attached to bed sheets or underwear. You will wash them often and be tempted to throw them out after an accident.

25) You are the expert on your own body, despite not having a medical degree. Your doctor may have graduated top of his class from the best school ever, but he can’t tell you how you feel.

26) Yoga is relaxing and the breathing technique helps me survive my Crohn’s.

27) Meeting someone else with IBD is one of the best experiences ever.

28) My ostomy surgery on August 10th, 2010 saved my life.

29) Pick your favorite song and dance to it. It will make you feel better.

30) Positive vibes and singing kumbaya won’t make your IBD go away.

31) My favorite place in Boston is the Boston Public Library.

32) My Mom is my best friend and she would do anything for me, and vice versa.

33) I have friends who love and care about me and I’m honored to know them and call them friends.

34) This list is getting a little long.

35) There will be a cure... in our lifetime.

Jennie

Will the Real Jennie Please Stand Up?

In the first grade, I had a family friend in the class. His name – albeit his ‘blog name’ is slightly tweaked – was Benny Davis. Let’s remember that my name is Jennie David. Jennie, Benny, Davis, David – it’s confusing. We were watching a movie in class, ‘Hercules’ if I do recall, when our teacher started whispering, “Jennie, Jennie.” I turned around, only to hear her say, “Benny, Benny.” Wrong name, I assumed, and turned back to the Greek tragedy Disney-style. “Jennie,” she said again, I looked, but only to once more hear “Benny.” This went on for a good few minutes, me turning around then Benny, until she finally said “Jennie and Benny! Both of you!”

That’s one thing when my name is mixed up with someone else’s. But it’s another when it’s mixed up with my own name. I get Jennifer, Jenny (spelled the wrong way!), and most hatefully, Jeanie. It’s just Jennie – I’m named after great-grandmothers who were just Jennie’s with the ‘ie’. Bottom line: it’s just Jennie.

But no, that’s not what happens. And interestingly much more in Halifax compared to Boston, but every time I go into a medical setting they call out for Jeanie. JEANIE. Not Jennie, Jeanie. Sometimes I correct them, sometimes I just roll my eyes silently and go with it. I want to say, “No, try again. Spell my name back to me and try again. Tell me when you find the ‘a’.”

It’s admittedly a silly thing to be annoyed about. Maybe it bothers me that they’re not paying enough attention to notice the spelling of my name, or the fact that it makes me sound about 1,000 years old. And maybe it feeds in to my massive annoyance of people misspelling Crohn’s as Chron’s, oh the very typing of the misspelling is enough to drive me crazy! It’s a hard disease name to spell, I get it, but learn to spell it, especially if you’re a doctor. My GP at the student health services spelled it wrong on my GI referral and I silently said to myself, “Thank you very much, I’ve lost all faith in you.” If you can’t spell my disease, I don’t trust you to treat me.

I had a friend whose mom used to get a lot of telemarketer calls. If they mispronounced her name, she would say, “Nope, she doesn’t live here.” One day when I’ve worked up the courage and frustrated enough with my alter ego Jeanie getting all of the attention, I’m going to say, “Nope, Jeanie isn’t here for bloodwork. But JENNIE is.”

It’s six little letters, two n’s, and ‘ie’, and no ‘a’. Will the fake Jeanie please leave and the real Jennie stand up?

Jennie

Jennie's Halifax HnW Speech 2011

The below speech was read at the 2011 Heel n' Wheel at the Halifax Waterfront. (Picture: Jennie on left)

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Once our lives collide with the medical world, there are many things demanded of us – to take our pills, be active, report new symptoms, and attend all appointments. I can remember those first few months after my diagnosis at 12 years old, going through the movements as if I was a puppet dancing. The steps of the dance aren’t hard to learn; in fact they’re rote and there are people whisking you around the dance floor. Knowing was one thing; knowing that I had Crohn’s and that I required medications and treatments was understandable logically. Acceptance, however, was not. I could not, and would not, accept that the rest of my life would involve medications and blood work and doctors. I held my doctors responsible for my disease, and viewed them as the people who had stripped me of my identity and wanted me to accept the new path they had superimposed on me. Acceptance felt like the ultimate confession, the ultimate defeat, when I would lose any remaining piece of myself and dissolve into my medical records.

Acceptance and resignation had always been synonymous to me – giving up and giving in. When I thought of accepting my disease, it infuriated me that it also implied that it was in some way it was only my problem to deal with. To me, acceptance of a disease was never leaving bed, not going to school, and having a poor quality of life – no one dreams of ending up like that. So I fought and I struggled and refused to be consumed by my Crohn’s.

But I was very wrong. Acceptance did not mean resignation in the least. Taking responsibility is a part of acceptance, but not in the way of burdening ourselves with the illness, but rather taking control of the situation. Acceptance has a reputation for being passive and submissive, but it might just be the hardest thing you’ve ever had to do. And after all, acceptance is not the final destination. It’s like having batter without a cake pan, or bed sheets without a bed – you need acceptance before you can get to a better place.

Acceptance means understanding, it means that I’m aware of the challenges or responsibilities around me. The next step is crucial – what do you do with acceptance? When the horror that we are accepting is inside our bodies, we can feel all the more betrayed and angry.

The best advice I received before having my permanent ileostomy surgery last year was to not look until I was ready. And although it was a good and decent suggestion, I couldn’t resist the temptation of pulling up my oversized Johnny to reveal the little bag that had saved my life. The bag was rubbery and medicinal, and beneath it was the meaty red intestine sticking out. My first thought was what did I do? How was I ever going to manage to accept my permanent internal tailoring and be happy about it? The answer: moment by moment, step by step. On my last day in the hospital, I decided to empty my bag in the toilet ‘like a big girl’ as the nurses had been emptying it bedside. As I attempted to model what I imagined it would be like, I opened the lip of the bag before pointing it towards the toilet. Needless to say, before I knew it, I had drowned myself and the bathroom with output and as I sat there laughing, I knew I was going to be okay.

And that is why it’s so exciting to be here today. We can accept that we have inflammatory bowel disease, we can accept that our bodies function partially as its own enemies, but we cannot – and will not – accept that nothing can be done about it. Today we are taking the metaphorical steps to bring an end to the pain, we are raising our voices and raising awareness. We have to accept our disease before we can fight for our future.

This is my pledge and this is my mission: I accept my disease, I accept my ostomy, I accept my responsibility to be a part of the cure, and I refuse to accept the limitations people think there are – because the truth is, there aren’t any.

Jennie's Halifax HnW Speech 2010

The below speech was delivered at the Halifax Heel n' Wheel in 2010. I'm thrilled that we've accomplished our goal of our book (mentioned below) and surviving and thriving with IBD.

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Everybody has a story to tell.

But sometimes, we wish we were telling another story. We wish we weren’t telling one of intestines and medicines and IVs and toilets - but one of a normal childhood and a normal life. We are each both the narrator and author of our own lives, the only catch is sometimes we don’t know the whole chapter until it’s happening.

If we tell certain stories enough, they begin a life of their own, you perfect the way you tell it, what words you use, where you pause. For me, one of those stories is when I first started getting sick. I was 11 and finishing the sixth grade, the valedictorian of my class and so excited for junior high. I was also experiencing white hot pain searing across my pre-teen abdomen - that succession of words proves how many times I’ve told his story - and within a few months I was 12 and had been diagnosed with Crohn’s. My family and I were oblivious to the diagnosis, a so-what-happens-how? attitude, I was the only person in my entire extended family to receive the diagnosis. Too soon did we figure out that we were in way over our heads, my Crohn’s Disease was not ever going away and there were no easy answers to decide upon. And while I had my parents and siblings, the story of those first few months stayed bottled inside me, there was no outside ‘safe’ person to unload upon, no tolerance for emotional breakdowns in public. So I kept my lips shut and did not share what I then considered more of an obituary than a story.

There were a few attempts to ‘match’ me with another youth who had IBD to ‘show me the ropes’ - but I was bitter and angry and did not want to be soothed into thinking that everything would be just peachy, because I was different and I was sick and that was not okay. The only actions I took daily to mirror my constant thought about my IBD was taking pills when my parents forced me and camping out in the bathroom.

I don’t remember exactly how we began to get involved, but then the next thing I knew, my parents had taken me to a CCFC event. I was at first shy and afraid - who were these people that I had some unspoken bond with? Where did I fit in? It wasn’t until I saw how they looked and acted and how they treated each other for me to realize that I would be ‘normal’ amongst this group and perhaps they did want to hear my story. And they did.

Being involved locally gave me a tremendous new voice and a purpose to share my story. I not only wanted to share my story, I wanted to change something. And while it seems like a huge leap from my deep denial, I felt my place in the CCFC community. When the opportunity came along to apply for the Youth Advisory Council (YAC), I jumped at the chance and applied as quickly as I could. Within a few months, a happy voice on the other end of the phone told me I was in.

The first time the dozen of us from around the country phoned into the conference call, my heart was beating crazily. I was the youngest, in some cases by about eight years, I sat on my bed listening to everyone exchange their quick stories, where they were from and what their diagnosis was. A couple of months later we all met at Congress in Toronto and all we wanted to do was exchange stories. I did not know any other youth who had IBD - and these kids were funny and smart and compassionate and empowered. It was exhilarating. They were university students, boyfriends and girlfriends, workers, athletes - they were amazing youth who had IBD and not the other way around. Their stories fueled me, and continue to this day, to inspire me daily to live my best life.

This year is my third year on the YAC and I find myself as the current chair of the council. In the short time that we’ve existed, we have created a website, business cards, tipsheets, a brochure, etc. - and soon to be a book where we can collect all of our stories. The book, ‘Tales from the Throne’, will collect submissions which you can email to thegutsygeneration@ccfc.ca and book cover submissions that you can send to the same place by July 16th. Yes, this is a shameless plug, but each one of us has the opportunity to share our stories, even just writing it down is a release of emotion and thought.

And now that I’ve shared one of my stories - you can ask yourself, what is the story you want to share? What is the story you want to write, and how will you get there?

Burn Baby Burn

Remember when your Mom told you to put on sunscreen? Well, you should have listened. Volunteering and coming out to the Heel n’ Wheel (HnW) isn’t enough to protect you from the sun scorching you. Of course, when does anybody really have time to slather on some SPF-30 when you’re busy setting up tables, registering people, and marching along your own HnW track?

My advice: make some time. My pediatric GI nurse has been involved with my local chapter for the past decade, and each HnW she would nag me about putting on sunscreen, remind me throughout the event, and smirk when I would come into clinic the next week slightly crisped. And so here is my cautionary tale to all of you Heelers and Wheelers:

It was a rare HnW for us in the Halifax chapter a few years ago – rain was no where in sight and the sun was shining down on the waterfront. You would have thought we all lived under rocks given our excitement about seeing clear, blue skies, and sunscreen somehow became a distant memory (or, at least for me). I tend to disregard the whole ‘apply every hour’ instruction on the bottle, and had patted it on my face and scarcely on my arms and legs. I’ve already outlined my obsession with face and body paints at the HnW in previous posts, and so I once again found myself bored at the face painting table with a table full of temptations. My team that year was called ‘Jennie’s Prednisone Posse’ and I (stupidly) decided to write this on my left arm in face paints. I thought it was great, and so did everyone else – at the time at least. I proudly swung my arm around and enjoyed the HnW.

Fast forward to the next morning, when I woke up and discovered, much to my horror, that I had gotten sufficiently burned around the face paint on my arm. Of course I had noticed this the night before, but it wasn’t that noticeable, or maybe I wasn’t really paying attention at the time. I don’t tend to burn, but there it was, a beet red left arm and in perfectly readable letters, JENNIE’S PREDNISONE POSSE.

In an effort to find a cure, I had successfully branded myself with the word POSSE. Go ahead and laugh, my family and chapter sure did. It wasn’t funny the next week, or the week after that, it took a good month for it to really disappear, for people not to look at me like I was crazy when they spotted my arm. I mean, I did look ridiculous – all of sixteen years old, clean behind the ears, and POSSE seemingly tattooed on my limb.

So a word to the wise – use some sunscreen and reapply every hour, unless you want to be branded. The weather forecasts continue to predict sunny skies for the Halifax walk, and while I hope that we won’t see a drop of rain, I will be the one nagging everyone else about sunscreen.

Happy walking

Jennie

The One Two Step

While I favored pirouettes and piles over the quickstep or the foxtrot, I am pleasantly thrilled with the ‘chicken dance’. No, not that traditional one we all know so well, the Gracie version (reminder: the 3 year old I babysit), the dance - I might add - includes flailing her arms and spinning in a circle until she falls down laughing.

There’s something untouched and pure and surprising and humorous and honest and real about little kids. They giggle when somethings tickles them, tears roll down their cheeks before they understand why they’re upset. Gracie’s newest obsession is the word ‘poop’, clearly I find this immensely entertaining, and I brought her my copy of “Everyone Poops” (I must confess it was a recent gift from my brother, ah the perks of having a bowel disease). She LOVED it and laughed so hard, asking what animals were on the pages pooping. I told her I had brought some more stories, she looked up at me with big eyes and asked, “Everyone Pees?”

Besides the fact that I love Gracie and her big brother very much and find them amazing little people, I’m touched even more to be their babysitter because of the way I started babysitting them. At the time, I had an NG tube and explained in detail what it meant to their parents, who were very understanding and supportive. By this time, I had a rote speech I’d give to kids about the tube, and was prepared to do this for Gracie and her brother. But much to my surprise, and delight, they didn’t seem to notice and asked no questions about it and couldn’t wait to show me all of their toys and books. Last summer, Gracie and I both went under the knife - her first for her little burst appendix, me next for my colon, but we’re both proud members of the down-an-organ club. They are reminders of my crazy dance with Crohn’s, the one step forward, two leaps back, falling down and getting up.

And so the theme of walking and feet and dancing is ingrained in me as I head into the final week before the Heel n’ Wheel. I pause to think of more ways to fundraise, not wanting to pitch my story as Hollywood’s next tragedy staring Natalie Portman (because, let’s face it, she is starring in virtually every movie nowadays, not that I don’t love her), but instead as just my life. Yes, I want someone to donate $10 to research. But no, I don’t want to go door to door with my big I-have-an-ostomy-and-a-disease eyes. I sent an email tonight to lots of friends and family with the exciting YAC and Gutsy Generation news we have worked on this past year as well as the bite-size version of my medical history, claiming pride and empowerment over my conditions (the truth, no matter how much it is drenched in cheesiness). So far, one donation - and hopefully more to come!

It’s human nature to want things we can’t have. For me at age five, it was purple hair (thank goodness my parents said no). For Gracie, it’s the (odd) desire to want to have one bang (aka one piece of hair as a bang) - she was taken with my lack of bangs and pretended to not have any herself. For my sister, it’s endless Timmie’s hot chocolates and ice caps (okay, perhaps possible, but unlikely). For people with IBD, it’s the want to be done with our diseases and get on with our lives. And come next Sunday, I will be walking, taking the tangible steps to achieve that - and who knows, maybe if I’m crazy enough, I’ll be doing Gracie’s chicken dance, celebrating what the CCFC has accomplished and the dance-worthy futures that lie in store for us all.

Jennie