ImproveCareNow Pac


Emma: Your Waiting Room Ally


Today is the second day of Crohn's and Colitis Awareness Week. Throughout the week, Jill, Jennie, and I will be taking turns profiling some ImproveCareNow innovations we are incredibly excited to share with the community. I have the honor of introducing Emma, a promising initiative out of Oklahoma University (OU) Children's Hospital  to bridge the gap between tech-savvy adolescent patients and their gastroenterologists.

Who is Emma? Emma is the main character in a captivating iPad game of the same name, developed by OU students in collaboration with Dr. John Grunow. The Emma iPad app is designed to engage young patients in the waiting room, educate them on how to better manage their IBD, and give clinicians a preview into their patients' health and needs. Each session is customizable to a young patient's diagnosis and history.

Put an iPad with the Emma app in the hands of a young patient; she's a little bit anxious about her upcoming clinic visit, but is tech-savvy and somewhat disengaged in the waiting room. Emma transports her into a colorful, interactive four-realm world. It reads like a storybook at first, but soon launches into a variant on Angry Birds. The adventure begins in Port Vanguard, the portal to all four worlds. Soon, our patient is swiping her fingers across the touch screen, navigating Emma's rocket ship through hazardous terrain and "boosting" it when it starts to fall. It's familiar, it's engaging, it's competitive....and it's educational!




Emma App Screen Shot Welcome to Port Vanguard Screenshots from Emma app courtesy of Robert Free (co-developer)

Emma 2As our patient plays, Emma slips in multiple choice questions that test her comprehension on topics like nutrition and self-management, questions customized to her diagnosis. Emma also asks the patient to rank her quality of life and emotional health. Emma sends our patient's responses and a summary of  specific target areas of patient education which need work to her gastroenterologist. Her GI can then tailor her subsequent visit to address gaps in her understanding of her diagnosis and specific areas of concern. Emma is all about streamlining the clinic visit to make effective use of everyone's time. The app is currently being beta tested at OU Children's Hospital, where a select group of patients are helping Emma reach her full potential before hitting ImproveCareNow centers nationwide.


Why do I think Emma is so brilliant? Emma is an effective and clever use of technology, which has been designed especially for a tech-savvy generation. Emma engages patients in the waiting room while giving physicians a quick pre-visit snapshot of their condition. She turns waiting room downtime into a productive use of patient energy (and maybe even jitters!) to better the patient-physician dynamic. I met Emma this past summer during a Patient Advisory Council beta test opportunity and was immediately impressed. As I transition into adult care, it's exciting to watch technology improve the pediatric clinic environment I lovingly leave behind. Emma is innovating the clinical experience, starting right in the waiting room. That's a real game-changer.




Open not Broken

I started off my life with Crohn’s as a nine year old boy with very little support outside my family … and frankly I just did not want anyone to know. I had some goals – mostly about excelling in school. During my years of elementary school and junior high, I told nobody about the battle I was having inside.  I didn’t want anybody to know about it and I certainly did not want to stick out from the crowd. “I want to be invisible,” I remember myself saying.

 

If you ask my friends now, they will most likely tell you that I stick out like a sore thumb. After you show your face on a video screen in front of the entire high school to tell them about Crohn’s everyone pretty much knows who you are. The other thing they might tell you is that Alex loves not being "normal" and he is okay with being different.

 

Some of this perspective on my changed life came to light while I was sitting in church listening to a sermon. I honestly don’t listen to all the sermons.  Maybe it’s that some of them are just over my head; but this one was different.  In his sermon the minister at my church compared the breaking of bread to the breaking open of one’s heart. He says, “We don’t usually think of being broken as a good thing. The word ‘broken’ really has a bad sense about it, suggesting that something is useless because it doesn’t work anymore. But suppose we think of it more in terms of ‘broken open’ and offering a way to get to the inside of the thing.” His philosophy about broken hearts really struck me. I wonder now whether he wrote this sermon about me.  Because when I think back I was broken (or at least my intestines were); and somewhere along the way that broken heart or broken situation, in my case, opened up.

 

I am now okay with everyone knowing I have Crohn’s.  I don’t have to hide in a corner when my Mom flushes my PICC line and I am okay wearing my backpack with my TPN lines hanging out and the pumps whirring away in public.  I enjoy meeting with my Doctor and talking about my disease with him, and speaking to other people with ostomies and IBD. The things that I hid from before have turned into my favorite things to do. The shy, soft-spoken boy has been replaced by an open, out-spoken one because I was willing to open my heart to my disease.


None of Your Business

For a long time, I thought I owed people disclosure of my Crohn’s disease. I thought it was as obvious as my hair color and couldn’t get far into a conversation without it coming up in some way. And in truth, virtually any story from the last nine years relates back to my IBD, but nevertheless the disclosure was a near-immediate thing.

 

I challenged myself when I came to school to not tell people. Not to hide it from anyone, but to be Jennie first and a person living with Crohn’s second. But now, as I apply to graduate school, I feel torn.

 

Whenever I tell someone that I want to be a pediatric psychologist for chronically ill children, they always raise their eyebrows and comment on how specific it is. Why, they want to know, did I choose that? Well (insert sigh here), I often tell them, I have Crohn’s disease.

 

But this, in all reality, is not really true. Of course I do have Crohn’s, but I don’t want to be a psychologist because I have Crohn’s. My exposure to pediatric chronic illness was because of being a patient, but why I want to pursue Psychology is because I’m extremely passionate about the field and doing research. Not as a patient, as an academic.

 

And this is the push and pull of my disclosure saga - to tell or not to tell. It’s one thing when I’m sitting face to face with someone and have the opportunity to explain and show (aka flash) my ostomy and delve into my whole gut-filled story. Sure, okay. It’s quite another when I’m applying to graduate school and trying to articulate my relevant research experience, to people that I have never met before all over the country who will likely only look at my application for a matter of minutes. In this case, disclosing excessively seems unnecessary - an unprovoked therapy session almost - and so I’ve tried to step carefully, disclosing succinctly in a way that does not consume my personal essay.

 

The heart of the issue is that it’s my story to tell. Disclosing is a choice and I get to decide who gets to know. Be it for graduate school, or a new friend, or a boyfriend, I can choose whose business it is.

 

Because I am not Crohn’s. I am Jennie, and proud of it.

 

Jennie


Laugh & a Half

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

 

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

 

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

 

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. Jennie's SignEarly Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

 

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course.

 

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was.

 

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

 

Jennie at the Finish LineNow to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us.

 

Hell or high water, people. Hell or high water.

 

Jennie


What We Wish Our Parents Knew

Mother and Daughter not talkingAt ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:

1) Take a deep breath: Living with IBD as a teenager isn’t easy, but it doesn’t need to be figured out all in one day. There are going to be days that go according to plan, and those that really don’t - sometimes just getting through the day is the goal.

2) I’m moody; get used to it: Regardless of my IBD, I’m still a teenager, and I’m going to be moody sometimes (or okay, a lot of the time). It doesn’t mean I don’t love you, it doesn’t mean I don’t need you; it just means I’m growing up.

3) Let me cool off: Between the stresses of growing up and dealing with my disease, there will be times I just want to be by myself. Let me take some time to calm myself down. I will come to you when I want to talk.

4) I’ll know when I’m ready: The second best decision I made after my diagnosis was to join a teenage support community. The first best decision was to wait until I was ready to make the most of it.

5) Forgetting is not failing: If I forget my pills a few times or make some choices I’ll regret on the toilet tomorrow, don’t assume you need to charge in and take control. I know it’s hard for you to watch, but you’ll make more of a difference if you ask me how you can help me do better instead.

6) One of these kids is not like the others: Especially when I’m sick, try to go easy on and make time for my brothers and sisters, even if it means taking time away from me. Remember that we all don’t know how it feels to be each other.

7) Caring isn’t always sharing: I know you don’t like when I don’t tell you about the blood or mucus or pain until it’s been happening for a few days – but until there’s something we can do about it, I’ve always felt it’s better for just one of us to be scared. Trust me to know when I need to come to you and when I don't.

8) It’s my body, and I’ll decide if I want to: I am going to be moving to adult care soon, and it’s important that I’m prepared to be my own medical advocate. Help involve me in my care, encourage me to call my nurse and refill prescriptions, listen carefully to my concerns and ideas, and help me make decisions with you and my medical team.

9) There’s nothing like a good IBDer: My IBD friends will just ‘get’ it, and it’s really important to have that social support - it helps me feel normal and social.

10) Hello, my name is IBD: If I ask you not to mention my disease in a public situation, it doesn’t mean I’m embarrassed. It may just mean I’d like to introduce myself before I introduce my disease.

11) At least it’s not ..... : Some of my friends with IBD or other chronic illnesses will be healthier or sicker than myself, but please don’t make comparisons. I know my worst may be someone else’s best, but that does not mean I don’t have a right to mourn my losses.

12) What hurts the most: When you say you’d take my colon from me and give me your healthy one if you could, I know it’s because you love me and hurt seeing me in pain, but I could never dump this on you. Some days, I wish you could see my perspective, but the thought of you feeling my pain makes me hurt more than anything.

13) Home is where your guts are: I don’t want to be defined by my disease, and part of that is going to school/work where I want. It’s possible to leave home and travel for school. With the right accommodations, I can do anything. I know my body and myself, and I can decide what I can handle.

14) Forever isn’t tomorrow: Sometimes, it’s okay to live in the moment, and make decisions for the next week or next month or next semester, without worrying about where we’ll end up. This is a forever disease, but we don’t have to make decisions for forever today.

15) A bumpier ride makes for a better story: Life is not going to be easy as pie living with IBD. Every year will be something different, but if we hold on and stick together, we’ll emerge one way or another.


Gutsy Friends + Geeking Out + Taylor Swift = A Great Weekend

I was standing in a dimly lit ballroom, full of researchers in their weekend clothes, eating celery when I saw her coming towards me. Her being my friend and fellow PACer Sami, a backpack on and a big bag over one shoulder, a wide grin breaking on her face. We ran at each like you see in those slow-motion movie scenes, met each other in a big hug, then, smiling at one another, introduced ourselves in person for the first time. This is the funny thing about gutsy people meeting - we know each other in a way that others don’t, even though we’d never met face to face. And just like that, it was a gutsy friendship at first sight.

 

We were abuzz with excitement in the nerdiest way - surrounded by researchers and GIs - we couldn’t keep from smiling at the scene. The ImproveCareNow Learning Session was completely novel to me in how Sami and I, as the two C3N Project patient scholars, were included in a conference designed for researchers. It was sort of like looking over the fence into someone else’s backyard, and all of the researchers were more than welcoming and excited to have us there. In case it is not abundantly clear by the end of this post, I am a huge researcher groupie - like huge, I was geeking out the whole time - and was so thrilled to be a part of the Learning Session.

 

Sami and I begrudgingly discovered that we had been given individual rooms - a thought which would likely please someone else but not us - so we decided to remedy the situation and move her things into my room (because it would have been a tragedy to have lost bonding time!). The first night we stayed up way past our bedtimes sharing stories and showing off the things we had brought to put on our storyboards. Finally by 1:30 AM, we conceded that it was probably time to go to sleep since we had to rouse ourselves at 6 AM, so we climbed under the covers and said good-night.

 

Saturday was filled with so many incredible things that it’s hard to recount them all, for any words I pick cannot accurately describe my enthusiasm or the entire experience. Having been given access to the Twitter account so we could send real-time updates, I became (even more of a) Twitter addict, tweeting everything from that first breakfast (Chicago was so ready for me with all of the bananas!) to quotes during the opening remarks. As someone who has IBD, it was really humbling and phenomenal to see all of these dedicated researchers and doctors working to improve care in pediatric IBD. I have found myself over the years struggling to establish medical legitimacy for my disease, and yet amongst this group, everyone understood, encouraged, and believed in youth with IBD - it was unbelievable.

 

We got to attend a session with parents and it is something I will never forget. Their faces were bright with enthusiasm, their children so young and hopeful, but their futures unsure. There was relief in their faces when they saw me and the other patients - knowing that their own kids with IBD would be okay and happy and smiling and at school and living life. I had never thought of my parents in that way before - the uncertainty, the fear, the love for their children - and I was incredibly touched by their compassion and insight into what it is like when your child has IBD.

 

The patients and parents had set up storyboards on the periphery of the conference room, and I would peruse them with Sami at my side, the two of us falling in love with all of the children. There is something odd and unnameable about looking at a child and knowing some of the IBD challenges in his or her future - those nights when there’s nothing to do but cry, days in the hospital falling asleep to daytime television, and times when the very thought of leaving the house seems impossible. But I know too that there will be moments - bigger and greater than the moments of pain - where the world will open right up for these kids and they’ll be unstoppable. I wish I had met them in person - but that can be my next trip to meet my little IBD crushes.

 

For the last day of the conference, Sami and I had been asked to choose our ‘IBD theme song’. On Saturday night, Sami and I laid on our bed, exchanging song options until we had found the perfect ones. The big reveal of our IBD-theme-song-extravaganza had been saved for the very last part of the conference, and we handed over the songs on a USB stick.  But when it came time to announce the songs, instead they called Sami and I to the podium. We got up and began to laugh nervously as we threaded our way through the sea of chairs and tables. Sami went first and played ‘The Fighter’ by Gym Class Heroes and we began to dance at the front of the room. Upon introducing my song, I explained that it was an ode to my colon - and ‘We Are Never Ever Getting Back Together’ by Taylor Swift began to play. The researchers laughed and clapped as Sami and I began to dance again and we were laughing with them.

 

ImproveCareNow Patient Advisory CouncilIt was the conference I’d be looking forward to for so long, enjoyed so much, and was over way too soon. Before I could blink, I was sitting on a plane bound for Boston. All of my roommates were out when I came home.  I unpacked and called my parents, telling them all about the trip and the countless amazing things that had happened. The next day, I went to the gym and just before I put my headphones in, a certain song came over the loudspeaker and I couldn’t help but grin. ‘We Are Never Ever Getting Back Together’ was on and I briefly considered taking out my ostomy and dancing, but felt that the joke would be lost on my college peers. I put my headphones in, the smile stuck on my face, thinking of my weekend and the great things to come for all pediatric IBDers.

 

Jennie


Great Points

I'll start by saying writing this post has caused me internal agony - and I'm not talking about the gutsy variety, but more like the heart-wrenching writers' block variety. Why? I've been asking myself that from the time I first sat down to write this in the airport nearly two weeks ago. I think it's because I still can't comprehend that the Learning Session (henceforth known as ICNLS) is over.

 

As the inaugural Patient Scholars, Jennie and I traveled to Chicago the weekend of October 5 - 7 to work, learn, and represent the PAC, ImproveCareNow's Patient Advisory Council, at ICNLS. The "pack" is a group of motivated high school and college students with IBD, dedicated to paying our experiences forward to benefit ImproveCareNow's interventions and the next generation of pediatric IBD patients.

 

ICNLS is a semi-annual opportunity for clinicians and researchers representing ICN care centers around the country and London to come together to share and inspire each other. This Learning Session integrated Jennie and myself as PAC representatives to learn from the team presentations, participate in PAC leadership brainstorming sessions, and interact with the care teams. As the commencement ceremony of our initiatives as Patient Scholars, we hardly had a moment to reflect on our incredible circumstances. Yet, despite the restless nights spent in awe of our company, I couldn't have asked for a more energizing weekend in IBD wonderland.

 

Exhilarating. Fast-paced. Wonderful. Inspiring. Incredible. Over. When Jennie and I danced to "We Are Never Ever Getting Back Together," a song Taylor Swift wrote especially for Jennie's dear and departed colon, we didn't yet realize the words would later hurt. For the record, I don't expect to never ever see you again, but even six months can feel like forever when you know what's out there. A group of strangers never felt more like home. Thank you.


The theme of the Learning Session was Transitions, in hindsight even more appropriate than I initially realized because the Learning Session itself was a notable transition for me. A Great Point.

 

The first Great Point in my IBD career was The Diagnosis. My first night in the hospital I spent in room 310. Vulnerable. Alone. Guilty. Feelings I should have never felt, but I did. Vaguely hopeful. For what? I didn't know then. Remission? I didn't realize I could or expected to engage in a deeper goal. I thought Moving On meant fighting IBD until I felt as if the whole dirty mess had been a crazy dream. I wasn't a sick kid, not in my stubborn mind. There have been other significant moments in my journey since then (scopes, Camp Oasis, the first enema, the Prednisone Disaster of 2009, learning that perms do not in fact make steroid face look any better), but none as life-changing as The Diagnosis or worth the title of Great Point.

 

Until now.

 

I wish I could've known I'd spend two incredible days in a much nicer room 305, only five digits and (less than) five years off. I wish I could've heard the sound of Jennie and I laughing on the twelfth floor of our grand hotel in Chicago, sharing stories about flying with Miralax and ostomates climbing literal mountains. I wish I could've felt the rush of our breakout sessions, planning our initiatives for the coming months, feeling the most beautiful kind of butterflies in my stomach rather than stabbing pain. I wish I could have seen Molly, Diane, and Sydney holding up a beautifully ridiculous little sign in the airport and us laughing as we walked to the hotel - the beginning of the next Great Point. I would have smiled more. I would have reached out more. I would have felt okay more. Perhaps I would have known too much. Perhaps I needed the struggle to know why I'm working for change.

 

ICNLS is over, but this is just the beginning of a new Moving On. A more beautiful and hopeful Moving On.

 

Are you ready? We are.


Superman Syndrome

When the moment comes to explain to someone what IBD is, there is a second where I'm mentally debating between the 'real' answer and the 'nice' answer. The 'real' answer outlines, well, reality and what was happened to me, being gutted and all. The 'nice' answer is the 'Oh, it's not really a big deal, my bowels can be fussy sometimes'. Oh lies.

 

But how do you explain to someone the troublesome storm beating around in your abdomen when you look fine without causing them to tailspin into a reaction of pity?

 

And so when I was thinking about this the other day, it hit me - I'm like Superman. (Clarification: I wish I were, wouldn't that be nice!) We're all like the super-hero who is an ordinary kid, typically on a smaller side (think Tobey Maguire in Spiderman), and it's only in the darkness or night when we become our true selves. Not the become-the-massive-green-hulk, but the idea is that we look normal, we are (mostly) normal, but there is something different about us. What I love about my metaphor is that unlike other things I've heard, this is a positive way to describe us. We have super-hero courage and strength and passion about awareness and advocacy, so how are we not super-heroes?

 

In high school, I was the girl who was sick. The girl with the NG who was once asked if I snorted an iPod shuffle (which, to this day, I am not sure how that's anatomically plausible anyway), the girl who would vanish for long periods of time (aka in the hospital) and suddenly reappear (see, super-hero!), the girl who made it a habit to take ambulance rides from school to the local ER. When I came to college, I tried very hard to just be me - the person who is in love with Patrick Dempsey, likes to run, works in a preschool, and wants to get a PhD in Psychology. I am all of those things and the 'super-hero' part is my Crohn's and my ostomy, things underneath my clothes and inside of me that don't make me who I am but contribute to what my body is. You should never feel like you owe someone a confession of your diagnosis - because you're not your IBD, you're Sarah or Kate or Joey or Marcus.

 

And you're a super-hero.

 

Jennie


To Listen

I am perhaps the proudest a sophomore could be of her undergraduate institution, and every year, I have the incredible opportunity to share my passion for Hendrix through a little event called Phone-A-Thon.

 

Yes, I see you cringing. I apologize if an overly enthusiastic student such as myself has called you just as you’ve sat down to dinner to tell you my story and ask for your support. I promise, some conversations feel as awkward for us as for you.

 

Sometimes, though, there’s that conversation that flourishes - that reminds me not only why I love interacting with alumni, but why I’m passionate about sharing my passions with strangers at all. The conversation where someone just “gets it.”

 

Tonight, an elderly alumni struck up a conversation with me about my minor, Medical Humanities, which explores the human aspects of medicine. I soon found myself sharing with him my role on ImproveCareNow’s Patient Advisory Council and my IBD advocacy efforts. I never expect anyone to have heard of IBD or, if so, to appreciate my passion - but here was someone who just “got it:” he has several friends with the disease.

 

This, on the same day that we talked about Miralax in Organic Chemistry class, and a girl on my campus approached me to let me know my Huffington Post article really inspired her family because her little brother has Ulcerative Colitis? Today has been a laundry list of unexpected happenstance. (Did you know that the main chemical compound in Miralax can not only relieve my constipation, but also contribute to a Suzuki coupling reaction? Neither did I! Found that out while drinking my daily Miralax-Gatorade breakfast oddly enough.)

 

Back to the story, we struck up a conversation about the significance of strong communication skills in medicine. He shared with me the story of a doctor of his who takes the time to sit down and ask him a simple question at the start of each appointment: “How’s life?” Not in a friendly-opening sort of way, but in a genuine I-am-truly-curious sort of way. Five extra minutes of this doctor’s time, he shared, give him that extra push to stick to his treatment regimen. Five minutes every three months remind him that his doctor truly cares about him, which in turn, makes him truly care about his treatment. In turn, I shared the story of a resident who treated me during my initial hospital stay and shared her experiences living with Crohn’s with me. She is the single most important factor that determined my attitude from that day forward. She took the time to return to my room after rounds and really listen to my feelings about my diagnosis. Fifteen minutes of her time changed my life as much as my diagnosis.

 

Five, ten, or fifteen minutes of just listening can profoundly change patient outcomes. It’s incredible, but I believe it’s true.

 

ImproveCareNow believes it too - creating innovations and changing the system to give every patient a voice and the chance to feel heard - and conversations like the one tonight remind me just how proud I feel to be a part of an organization dedicated to giving voices to young IBD patients and their families all around the country and England.

 

In the words of a wise old stranger, “It’s not just medicine that will cure people. It’s doctors who will listen, believe, and give hope.”


 

 

 


You're Making Me Crazy

 

 

 

 

 

 

Unfortunately, I can remember it like it was yesterday.

 

I was at the hospital - again. Missing school - again. In pain - again. And had just been told I was fine - again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

 

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way - I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

 

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life - with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system.

 

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

 

And remember, you’re not crazy. You’re gutsy.

 

Jennie


 

 

 


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