LOOP Blog

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.

I tell my Kindergartners to make choices that are kind.  Isn't that the Kindergarten explanation for how Crohn's disease works; it causes your body to make the unkind choice to attack itself. Ever since I was 13 part of my daily life is deciding how to manage having Crohn's disease.  I am free to make choices that heal or choices that destroy.

Being a part of the Patient Advisory Council, Take Steps, and CCFA encourages me to make decisions that bring wellness to myself and others.

A must-read reblog from The Lybbaverse - about getting #healthier2gether.

There are many reasons why ImproveCareNow (and collaborative healthcare networks like it) is a good thing.  The website at healthiertogether.org is a venue for everyone who believes healthcare is better when patients, families, and care teams are able to work together, learn from each other and share insights.  It is a place to share reasons and what matters, or to simply say "I Support ImproveCareNow" or "I Support Getting Healthier Together".

Please help us reach our goal of 1,000 people showing their support by September 15th.  Each one of us can make a difference.  Together we can make change.  Please share your voice - today.

How can you share your voice and help?  Visit healthiertogether.org today and show your support.  Support comes in many forms - a note or a novella, a photo or a poem, a story or a song. Share widely. 

Thank you.

Not sure what ImproveCareNow is?  Read the Purpose Statement.

If ERs gave out awards to their most loyal customers, I’d be a no-brainer for the #1 Customer award. But, since I live in reality, I collect medical bracelets in lieu of my big award.

Ending up in the ER on a Wednesday around midnight was an unexpected way to spend the night. When my Dad and I started walking toward the way-too-familiar ER entrance, I turned to him and said, “This is how I spend a night out on the town.”

Jennie: 0, Body: 1

Ironically, my ER-dash had nothing to do with my Crohn’s, but rather a separate condition that leaves me prone to blood clots. I’d developed some chest pain earlier in the evening and given my odd combination of past history with clots and the fact that I'm now working in cardiac surgery (and being all too conscious of heart problems), my parents and I figured safe was better than sorry, even if it did mean adding another metaphorical stamp to my ER frequent flyer card.

FYI: Chest pain is like the golden ticket in the ER – you whiz right in and before you know it you’re strapped to an EKG and instructed to stay still (warning: not an encouragement to report chest pain to triage unless you have it!). For an ER that I’ve spent way too much time in, this was by far the quickest trip to a room yet, and as I was being taken to the room, I noticed a sign that bugs me every time.

STAFF ONLY

Capital letters, bolded, just in case you couldn’t read it on the first go-round. I remember the first time I saw such a sign, in my elementary school, walking by the staff room and feeling indignant. Staff only? I thought to my self. If staff are people who work somewhere, then I’m staff too because I work at school. Why are students not considered staff? Yes, I’ll admit that staff has a more nuanced meaning than simply ‘working’ at a place, but even so it bothered me then and it bothers me now. Especially given that I actually am a hospital employee now, albeit not in the ER, do I dare cross the threshold of the STAFF ONLY areas?

Spoiler alert: I did not stomp through the STAFF ONLY hallways proclaiming that I too was staff, but I did something better. The ER resident assigned to my case was a young, dry-humored doctor who seemed patient and kind even if it was the wee hours of the morning. When he asked for my past medical history, I squinted at him and told him I wasn’t really sure where to begin. I began listing my medical conditions and issues as he busily scribbled it all down, asking some questions and prompting me to recall other relevant medical history. Every addition to the list made him raise his eyebrows and I couldn’t help but laugh as I continued to rattle off problems – truly, it would have been kind of funny if it wasn’t so ridiculous. I intentionally used all of my medical jargon to show him that I knew what I was talking about. He smirked at me and said, “When are you going to med school?”

At one point, he looked up from his paper and said, “You know, I thought I’d come into the room and meet this 21 year old girl with multiple problems and risk factors and she’d be all whatever, but instead I come in here and you’re all bright and happy, I’m just like, I don’t know.”

“Well,” I told him. “You know the body, even when it’s crappy, is incredibly resilient and you can still do everything and do what you want.” I proceeded to tell him about graduating on time from college with double honors, and he held up his hand for a high-five. It’s official folks: high-fiving a doctor has been crossed off my bucket list. And to be clear, it is not that I think I’m extraordinary, but I do think I am normal and I think that is exactly what struck him.

I hope that he remembers me - and the notion that living with a chronic illness is still living - years from now when he’s a little older, a little greyer, and has his own patients without an attending around to keep tabs on him. I hope I taught him something that he couldn’t learn in a textbook. I hope I earned my honorary medical degree by showing him that doctors can and need to learn from patients just as much as they need to work with patients. There may be hallways marked off with STAFF ONLY, but that at the end of the day, it’s not about labels or the costumes of lab coats or Johnny shirts, but rather about the collaborative relationship, the give and take, the listening and the caring between doctors and patients.

Because we’ll get a lot farther if we work together versus working alone.

Jennie

It's no secret on this blog that Jennie and I both adore Taylor Swift, but I perhaps admire her liner notes more than any particular lyric. One in particular inspired me to share my story, even when I felt like I had nothing worth sharing:

"There is a time for silence. There is a time for waiting your turn. But if you know how you feel, and you so clearly know what you need to say, you'll know it. I don't think you should wait. I think you should speak now."

Jennie and I have a secret theory that T Swizzle is an ImproveCareNow supporter all the way. "We Are Never Ever Getting Back Together" is just too easily about a colectomy. Alas, we are currently without any proof to back up our theory, but like any of her songs, it's quite obvious Taylor wrote the above quote with inflammatory bowel disease and ImproveCareNow in mind.

Taylor was writing, of course, about the Healthier Together campaign. She - and we - want you to speak now. Every family connected to an inflammatory bowel disease patient has a story to share - and we want need to hear and share those stories.

Networks like ImproveCareNow are leading the way to ensuring innovation, quality, safety, and value for every patient, every time. We're all about engaged care, empowering patients, families, care teams, and researchers to work together and share information seamlessly to drive improvements in the care of kids and teens who deserve a fantastic quality of life and a cure. It's not just your doctors and nurses who are the catalysts for change. It's all of us - little and big. When we work together, kids with IBD get better, faster.

Healthier Together is a movement to support ImproveCareNow through the collection of 1,000 statements of support by September 15, 2013. What can you do? If you are a patient with IBD, a family member or friend of a patient with IBD, a clinician, a researcher, Taylor Swift, really ANYONE, you can (and should!):

1. Visit and share www.healthiertogether.org.

1. Write a letter (or even just a sentence or two)! Why do you believe it's important for patients, parents, care teams, and researchers to work together in a learning health system like ImproveCareNow? Short, long, poetic, epic - anything goes!

1. Create a video! Let us hear your story. Make it a collaborative effort and interview your care team. Gush about your dreams for IBD care and how learning health systems like ImproveCareNow can help make them a reality.

1. Draw a picture! Too young to write? Are you an artist at heart? Not sure how to put your thoughts in words? Show us your vision for collaborative care and why it matters for inflammatory bowel disease patients and families.

1. Take a photo! Hold up a sign, show us a memory, or let your smile speak for itself.

All letters and media can be submitted at www.healthiertogether.org. Photos can also be tagged with the hashtag #healthier2gether on Instagram (follow us @healthier2gether, too!)

Jennie and I share our stories all the time, but it's not enough. We need the little stories, the big stories, the crazy stories, the boring stories - because no story is ever unimportant. Write it or draw it or speak it into a video camera or post it on Instagram, but whatever you do, I don't think you should wait.

Bonus points to anyone who can get Taylor Swift (@taylorswift13) to submit a post to the Healthier Together campaign.

S+J

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

Picture this: you’re waiting for class to begin, or an elevator to open, or for a cashier to call you to the counter. Sound familiar? Welcome to my life. With a fair amount of time spent waiting, I often (along with the vast majority of my contemporaries) pull out my smart phone and start sifting through text messages and checking (and re-checking) my email. It kills a few minutes, and before you know it, class is starting or the elevator comes or the cashier calls out, “Next in line!”

Three summers ago after I returned home energized from my freshman year of college, I began a summer job as a babysitter to three one-year-olds. I love kids and these little ones – a pair of identical twin boys and a little girl – were as precious as they come (besides nap time when the boys would cry until their faces were red). I so enjoyed watching them discover the world and interact with myself and each other. I had just started a new biologic medicine before leaving school for summer break – it was going to be ‘the one’ (sadly, ‘the one’ in the chronic illness world rarely refers to a significant other, but instead the lofty potential of a medication to bring on the sought-after remission).

Spoiler alert: it was not ‘the one’ and one evening I found myself at the mouth of a toilet throwing up. I banged on the ceramic tile floor of the upstairs bathroom to get my parents’ attention downstairs in the kitchen, and after they ran up the stairs to see what the matter was, they found me in tears pleading to them that something just wasn’t right. A scope and lots of sedation later, the answer: severe inflammation throughout my colon. There’s a lot of ways to say it, but it came down to one thing – farewell colon.

There was a park a little ways away from the kids’ house and we would often walk there to play (note: a triple stroller with three kids is super heavy!). I recall walking home from the park one day and needing to go to the bathroom, immediately.   I considered going to a random house and demanding to use the bathroom but decided against it. I made it back to the kids’ house and soon found myself housebound there with my three charges, herding them in the bathroom so I could watch them every time I needed to go (which was quite often). Between bathroom breaks I can remember standing in the kitchen with an Oreo on my tongue, trying to find the energy to play with the kids.

The question soon became how did I get so sick so quickly? The answer was complicated – first and foremost, I had never really been well. Secondly, and perhaps more importantly, I had become so accustomed to feeling ill and dealing with symptoms that the feelings of wellness, health, and energy were merely distant memories. I could talk about them, but could not really physiologically remember what it was like to be well. Going to the bathroom existed solely as a horrifying painful experience, but it was my daily reality. And somewhere along the way, my disease had made the transition from uncomfortable and unpleasant to unbearable and unrealistic.

Having Crohn’s isn’t my fault – but it is my responsibility to do my best to take care of myself. After some initial denial, I was a conscientious patient who asked a lot of questions and adhered to my medications and spoke honestly with my doctors.  But I said farewell to my colon anyway.  What had I done wrong? How could I have better predicted the steep descent of the flare that eventually took my colon? Another spoiler alert: it all ended up just fine, as I was able to squeeze in my ostomy surgery a month before my sophomore year; I returned to college that semester and I love my bag. But the whole experience made me think, there must be a better way to track my symptoms so that I can catch myself when I’m starting to slip down the mountain; so I can alert my doctors and put up the CAUTION signs and figure out a strategy to rescue me from a debilitating flare.  You know, even without a colon, I still get flares.

Now picture this: you’re waiting for class, the elevator, or the cashier. You reach for your phone, but instead of texting a friend, or checking the weather, what if you took two minutes to track your symptoms? Well, luckily for us, there’s no ‘what if’ because it is real. It being Ginger.io, a smart phone app and ICN innovation that does a few super cool things. In honor of Ginger.io, I’ve made a list.

Ginger.io is Super-Cool Because…

1) It looks cool – it’s a sleek app that’s easy to use (in research geek-speak: it has a great deal of clinical utility because it’s feasible for participants to navigate).

2) It sends you push notifications when the surveys (which take an average of 2 minutes) are ready to complete, so you’ll never miss a beat.

3) It leverages your smartphone’s location services with the idea that when you’re feeling well, you’re moving all over, and when you’re feeling icky, you’re staying in bed with some Netflix (okay, so maybe the latter is just me….). The app literally tells you how much you travel so you can have a clue as to whether or not your ‘moving and grooving’ habits have changed (but don’t worry, it doesn’t creepily stalk you!).

4) Daily surveys capture the details of whether your pain is getting worse or better, whether you’re going to the bathroom more or less – in other words, it helps you become more conscious of your disease and any changes in your symptoms (i.e., giving you and your medical team the power to stop a flare in its tracks).

5) You get your info – you have a chance to receive a monthly graphic report of your answers to bring to your next doctor’s appointment.

6) It pays! A little moula never hurt anyone! Since you’re helping with research, there’s a financial incentive for every survey completed – and no, it’s not monopoly money!

Would my disease and surgical history have been any different if Ginger.io had been around 3 years ago? Maybe. But my point isn’t about rewriting my history; it’s about my ability to get engaged by tracking my symptoms and about being involved in health care innovation research in a way that is directly beneficial to me (and hopefully many others who live with chronic illness every day). In a busy world, Ginger.io is an efficient use of my time.  I don’t mind spending a few spare minutes here and there to catch up on my health and assess how I’m doing.

Your mission, should you choose to accept it, sign up for Ginger.io.  Take a few minutes to dedicate to your health on a daily basis (and hey, it will come in handy when you’re bored and staring at your phone), it’s an app-solutely great idea!

Jennie

To my 12-year-old, newly diagnosed self:

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

Hear the voices behind the blogs - Patient Scholars Jennie David and Sami Kennedy will chat via LIVE Webcast with Dr. Peter Margolis about their work with the C3N Project and the ImproveCareNow Network this Thursday, June 27.  Jennie and Sami are part of the Patient Advisory Council (PAC), where they collaborate with a diverse group of patients to help their generation and the next by working alongside researchers, clinicians and families.  What does a PAC member do?  You’ll have to tune in Thursday and hear for yourself.

Find out more about the PAC here, and make sure to bring comments and questions to the LIVE discussion - register now!

C3N LIVE Webcast | June 27, 2013 | 12 PM ET

Not available to join the Webcast?  Follow and join the discussion in real-time on Twitter.

Hey.

Breathe. I know you want to scream right now, because it hurts so bad. I'm sorry.

I know you struggled to sit through that presentation. I know you didn't leave because you were afraid you'd get in trouble. You didn't want to be embarrassed. You wouldn't know what to say. You have diarrhea and it's really bloody, and I know that scares you. I know there's no way to say that easily, so you keep quiet. Some days, it's just blood. I know you wish you could talk about it. One day, you will.

I know you're scared. Scared that next time, you won't make it. Scared that the line outside the stall will start to get impatient. Scared that everyone will notice it's you giving off that smell. I know you wish you had more hands, so you could plug your nose, grip the rail, and hold your aching belly at the same time. I know you worry that one day, the pain won't pass, and you won't be able to wipe and stand up and just leave. You don't know what you'll do then. You're scared to look down, afraid of what you'll see. It's getting worse. The doctor said it would get better. I know it doesn't make a lot of sense to you now. You're eating only the most basic foods. It's a bagel every day for lunch, maybe white rice and a banana for dinner. You're staying hydrated before you run. That was supposed to make it all better. No matter what you eat, the pain makes you moan and cry and scream, but you know you get through it every time. You're going to get a break soon. It will be okay.

You're going to face something even worse than that pain, too. Bad doubt, worse than the worst of your pain. It will hurt you more than anything. Trust yourself. Your pain is real, and you are not weak. You are loud and smart and spunky. Be that girl, even through the pain. I know you think letting people do nice things for you will make you not-a-grown-up, but let them. It's not baby-ish to need a hug or do a silly craft. Keep that in mind...say, two weeks from now. That was a hint. Hey. Really. You're being more of a grown-up than you know right now, even right within that stall.

I'm sorry. I'm sorry that the field trip you've been anticipating for months had to go this way. I'm sorry that you couldn't eat at lunch. I'm sorry that when you get on that school bus to go home, you're going to sit alone and lay your head against the window, clutching your stomach, wincing with every bump in the road, hoping you see the school before it's too late. I'm sorry that when you go to track practice, you're going to be the last runner to cross that finish line again. I'm sorry that you're going to have to keep running all the way inside to the field house bathroom. I'm sorry that you're going to have to get back in a car to go home. And come back tomorrow to go through the pain and confusion and loneliness again. I'm sorry that you haven't had the normal freshman year you so badly wanted.

I know you're not wondering why you, but you are wondering why, and I am sorry that even I can't tell you that. No one can. But, one day, you are going to dream of finding the answers to questions you don't even know to ask yet. You are going to read books and hear stories about cells and pathways in your body that sound too incredible to be real. But, they are. And you will love those stories so much that you will want to learn every detail of those stories and write your own, too. You will have dreams you cannot even fathom yet. Dreams bigger than the stories and bigger than the pain.

I know it bothers you that I'm apologizing. I know if you were feeling better, you'd probably even be angry that I'm being so unclear about everything. This is our story, and you have to live it out to become me. Believe me, you'll like who you become. I'm sorry that you have to feel this pain, and that it's worthy of a letter, but know this: one day, you will speak about this pain, and the crowd will stand up and applaud, and it will be one of the happiest moments of your young life.

Hey. Don't look down. Just this one time. You know what's there. Look up. You don't know what's ahead yet or even what your problem is, but one day, you're going to be part of the solution. I know.