I can, very clearly, recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie

Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.

Last year I made an animated film about my diagnosis with Crohn's disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

I have been meaning to write this post for a while but the thought of sharing my voice felt a bit self-glorifying so I held back, until now.  I realize that I may not be the only one holding back, so I decided to open up about getting involved in case others are feeling similar.  That is, wanting to give back maybe, somehow, not certain how, but also not ready to or feeling any desire to rally a crowd or become a spokesperson of any kind, any time soon.

I was diagnosed with ulcerative colitis 11 years ago, at age 16.  I have worked on research studies coincidentally linked with IBD since I graduated college and am currently working alongside a lot of big-shots in IBD research while getting my Master’s in counseling.  Speaking about my disease comes easily, trying to create a buzz about it does not.

For months I have been contemplating why I am not more interested, more invested in becoming more involved.  But what I also have been questioning is what it means to be involved and at what level it is acceptable.  Whether it is participating in a research study, writing about your experiences, sharing your story with a friend or broadly campaigning for awareness; being involved with a disease that has debilitated you in some way can seem daunting, overwhelming.  Why would I want to think about my disease any more than I have to?  Doesn’t thinking and stewing about this condition only make things worse?  Sure it can.  So if getting involved doesn’t feel right for you, at this time in your life, at this stage in your development or at this phase of your condition, that is OKAY.  Getting involved should make you feel comfortable and empowered.

This reminds me of the times I practiced meditation when I was really sick.  I did not focus on or contemplate my disease, no.  Instead, I visualized light radiating above my head where I pretended I was HEALTHY, that I was healing. I did better forgetting I was in pain, had chronic bloody diarrhea and had to eat a limited diet.

A friend recently shared an article with me called Engagement in advocacy: Not an all or nothing thing.  This resonated with me.  People considering getting involved come from all walks of life. They might be sick or in remission, they might be emerging from or deep within depression, they might be moving on with their lives happily and healthily and never looking back at the disease, they might be graduating from high school, college or grad school, they might be committed to another cause (just as worthy), they might be mothers of other children, grandparents, friends, doctors or researchers who wish they could do it all but don’t have the time or resources, they might have more skills and resources or less than others, and they might have limited or unlimited availability for whatever reason.

No single situation or story is the same.

A spectrum of ways to be involved, which encourage and empower every person at any stage to jump in, will welcome more people into the fold and build a community that represents everyone’s uniqueness, as well as our commonalities.

I encourage each person to consider what makes them comfortable. Your voice, your experience, your time has value however you choose to share it.

[Editor's note: This post was shared by Elizabeth Monti Sullivan. Liz works at the James M. Anderson Center for Health Systems Excellence leading efforts toward establishing a mentoring program and coordinates health care innovations like Passive PRO as part of C3N Project team.]

Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.



 

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.

Flare. It’s a common, yet dreaded, word used by IBD patients.

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

Saying those simple words is incredibly humbling for me.

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

Humbling.  All of it is so incredibly humbling.

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

Dearest 13 year old Me,

You want so badly to be brave, but you don't think you are.  Instead, you believe that crying means weakness and guard yourself from others to hide from the feelings of insecurity, embarrassment, and frustration.  Here, where you come to the point of realizing how poor and needy you are, is where you will begin the journey of believing that you are brave.

No, you won’t ever like fruit punch, Nesquick, Jello, being touched in spots that needles go, the smell of anesthesia, or the look of medical equipment.  You will have to encounter these often and will decide down deep in your soul that you will not be overcome.  You will make bracelets to raise awareness that almost all the girls in your high school will wear, and will raise 5,000 dollars for research.  You will run a half marathon. You will graduate Summa Cum Laude. You will be a teacher.  You will have overwhelming support from people you love you.

Having Crohn’s is messy, difficult, sad, angry, emotional, unjust, and terrifying.  You will feel many of these things.  It will be hard because it is these feelings that will betray you and cause the traumatic events to be seared in your memory.  I’d like you to fight to control your mind, to shut the door on unhelpful memories, and to continue to move forward.  Your feelings are valid but they are not the only truth.  They are not who you are.  Who you are is loved.

At the end of the day you will face challenges, and on top of that you will have to battle Crohn’s.  I bet you wish you could catch a break. You feel trapped inside your own body that doesn't quite work right; that may be the hardest part of all.

This is the part where you remember you are braver than you think.

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

Jennie