First and Last

Posted on 13 May 2013 by jendavid91

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Graduating college is funny – you spend so long thinking about what school to choose, and then what classes to choose, what dorms to live in, and which textbooks to buy or rent. I remember matriculation four years ago, sitting in the crowd of my new classmates, a pit in my stomach trying to quell my intestines from causing a scene. To think about how sick I have been these past few years – the sheer number of doctors’ appointments, pills swallowed, IV attempts, hospitalizations, scars now icing my abdomen, and an ostomy bag carefully tucked into my dress, it seems unbelievable. But I want to be clear and direct – college was an amazing experience, and while I perhaps had far from the typical four-year journey, I have so loved my time at school and done some wonderful things.

When I was graduating high school, people who didn’t know me well cautioned me with wrinkled noses that I should stay home, I was – after all – sick, and why would I want to go to school in another country? My parents, undaunted by my persistence in school choice, willingly sent me on my way (okay, not so willingly when it came to saying goodbye, but that I’m guessing is a normative going-off-to-college right of passage). I found friends who saw beyond my disease, who have laughed with me, brought me extra clothes in the hospital, met my doctors, and made cupcakes in my kitchen. I have done community service and had a job serving under-resourced preschools all four years. I have been doing research since freshman year, did a senior thesis and got a grant, and am being awarded a Psychology Research award at graduation. I’m graduating with honors. I have perfected my Patrick Dempsey addiction, finally understood how to use Tumblr, hiked Machu Picchu, ran a half-marathon, and never pulled an all-nighter. And just before graduating and really entering the ‘real’ world (whatever that actually means), I even went on a first date – make that second, compliments of vegan ice cream.

The point to the rambling – I went to college. I went to college with Crohn’s. I went to college and was sick. I went to college and had surgeries. But, I went to college. I went to college and did it in four years and am graduating. I did it. I did not do it alone, but I did it. And so can you or your child or your best friend or that new patient you had in clinic today who was frightened and sick.

As an English minor, I took a class this semester that centered around literary non-fiction. The final class project was to write an essay of our own – mine was a braided essay about the history of Crohn’s (look it up, the story is fascinating!) and my own personal experiences. I even interviewed my GI for the piece. After being undecided about the title for literally weeks on end, my roommates finally prompted me to accept the working title of ‘Not Where I Thought I Would Be’ – and they, as usual, were right. At one part in the piece, I wrote that my GI understands that even though I may be broken, I am not breakable. I sent him the essay, which he so kindly read, and sent me an email response. “I would dispute one thing,” he wrote. “You are not broken. You are whole.” And while the thought was enough to leave a permanent grin on my face and make me feel incredibly lucky and honored to have such a compassionate doctor, it made me think – he’s right. I am whole.

In pediatric chronic illness, the focus is often on what’s broken. Your ESR is too high, you don’t like taking injections, you miss school to see the doctor, band-aids dot your arms to remind you where blood was taken. There are pictures of your gut, all twisted and inflamed, the pharmacist knows you by name, your medical chart has several volumes. But we forget to remind ourselves of something really important – we’re still kids, we’re still growing, we’re still dreaming. Our bodies may be in need of support, but our souls and spirits and whole. Be it going to college or anything else, having a chronic illness is only part of the equation.

If the last few weeks have proved anything to me, it’s that life is always happening – even if it means my college graduation will be here sooner than I want. There are still so many firsts in store for me, so many exciting things ahead, and yes, enough challenges (both health-related and other) to keep me busy. Perhaps it’s not where I thought I would be, but to be honest, I’m pretty darn happy I ended up right where I belonged.

Jennie

Kicking Up Confidence

Posted on 9 May 2013 by samisophia

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis – but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist’s office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court – and despite the March cold – donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

But I did it. And nothing happened.

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn’t do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot – and despite the overwhelming evidence that I won’t react – I still look for a hive to pop up. I am safe – but I can never erase that twinge of fear and doubt.

IBD is similar in some ways.

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn’t go. I’ll think, ‘This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.’ I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it’s just my menstrual cycle. That’s the most likely conclusion, and for three years, that has been what it always turns out to be – but my mind never goes there first, even now. Perhaps it’s a coping mechanism for when the day does come that I slip out of my remission – as if I think I’ll find comfort in saying, ‘Well, at least I knew this was coming.’

Living with a chronic illness, I am always walking through a pit of danger. Right now, I’m protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won’t hold off my immune system until I’m old and gray, but in the absence of a cure, my disease isn’t going anywhere. Even my medications could hurt me one day.

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

It’s important to know what I can’t do, but it’s equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It’s important to know where I stand, but even more important to walk with confidence through wherever I am – whether it’s the sidewalk or a courtyard of pecans, remission or a flare.

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if’s of my disease) can be unnerving, but I am walking, kicking, and dancing through it.

Making the Team

Posted on 23 April 2013 by samisophia

In October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene – so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen – and so to many, I’m just a kid still. I didn’t know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was “just a patient.”

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients – but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It’s so clear to me now that “Just a patient” is not a concept that exists in ImproveCareNow.

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) – but together through the art of virtual communication and the help of some friends, we didn’t let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance – the PDSA – aptly named after a fundamental quality improvement measure – because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was “just a patient” with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year’s time, it’s my hope that more patients will have felt the joy of this kind of welcome.

Five years ago today, I was waking up early – colon all cleaned out – and driving to the hospital with my mom, neither of us knowing I wouldn’t be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn’t have even imagined myself standing in front of such a brilliant crowd and sharing my story – a story that only just begins with a diagnosis and hardship – on the level I did last weekend. Today, I can’t imagine what comes next – but I know I’m humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars – because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

I do this because, right now, another young girl and her mom are driving to the hospital – and they don’t know what comes next – but I do.

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she’ll be able to help change care for the better for the next girl with IBD.

Like any good team, we are more than the names on the backs of our jerseys when we unite. In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.

To Nudge or to Push

Posted on 23 January 2013 by noel jacobs

Mother to teenage son: “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight): “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you. And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it. Can’t wait for that!” [insert sarcasm]

And, end scene. Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated? Maybe. But I know many families in this boat. They don’t have emergencies, and they get a clean “Good job, no problems this quarter!” during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life. She’s running this show!

How much should we push our teens to start taking charge and showing responsibility? It’s difficult. If we push too little, they don’t grow up. If we push too hard, they retreat and we keep doing everything anyway “because someone has to.” And by the way, ‘Why wasn’t that last relapse and hospitalization enough to make him wake up and start doing something about it?’

Deciding when responsibilities and consequences belong squarely on the shoulders of a teenager is difficult. So I believe in not placing it squarely on their shoulders. Too many experiences in your child’s life will happen too fast for them. Generations ago children were shown early the value of very hard work and developed the ability to value important things in life. In the culture of today these milestones are sometimes delayed too long and kids end up not being ready for adulthood’s responsibilities. George Bernard Shaw is credited with writing: “Youth is wasted on the young.” We look back on our own youth longingly, and wish our children could appreciate what they have while they are in their best form with the fewest problems and fewest responsibilities. But then we’re frustrated when they’re not ready for adulthood.

What I recommend to my parents, and work with them on during transition consultations, is a very intentional, dedicated and patient shift from parent-only to parent-child partnership through contract. Remember, childhood and adolescence are not just about fun, freedom, and all the time in the world. In all times and across all cultures youth is a time of great education and preparation. But we sometimes lose our perspectives as adults and forget that we are supposed to be their most important teachers. So here’s how we can teach them to prepare for adulthood. We show them, we do things together, we set expectations, and then we structure their lives so they’re rewarded for moving forward, for accepting apprenticeship. And while they’re learning, while they’re taking a little more on for themselves, we encourage and reward them for trying and for succeeding (and we stand by them when they do not succeed). After all, mistakes are proof that you’re trying, right?

Mother to son: “Okay, honey. I am going to tell you something important. Right now, I’m your mom, and I’m used to being in charge of your health. I use my insurance, I make your appointments, I take you to the doctor, I ask the questions, I go to the pharmacy, I pick up your medications, I put them in the day minder boxes, and I nag you until you take them. You’re going to take all of this over one day, because I love you and you have to live your life; I can’t live it for you. It’s not going to be today, or tomorrow; it’s going to take a while. But we’re going to do it a little bit each day, together, until you feel good about it, until you know how to solve the problems that come up, and until you are absolutely on top of everything you need to do to live well on your own.”

This principle applies, of course, to laundry, to keeping a room clean, to fixing food in the kitchen, to homework, even to friendship and romantic behavior. It is apprenticeship. The training starts early, it starts deliberately, and is more difficult for the parent than for the child. Again, this is the way it’s supposed to be. You cannot point, demand, and then leave responsibility for medical adherence in the hands of a child. But you can hold the hand of the child, guide them through the experience, and slowly transfer, through gradual steps and support, all the responsibility they’re ready to accept. And they’ll be ready. Ask a psychologist, like me, who has seen parents and children do this well.

Start today. Age 8? Great. Age 12? Go, go, go! Age 18: It’s time to sit down and have a conversation. And roll your sleeves up.

Mother to son: “Honey, you did a great job this week getting your pills organized into the day minders while I watched, and taking all but two of your evening pills just based on your phone alarm. I’m proud of the progress you’re making, and I want you to know I know you’re going to be ready for what life throws at you! I’m behind you all the way.”

Son: “Mom, it’s not like I’m leaving tomorrow! Don’t get all gushy. And don’t EVER do that in public.”

Laugh & a Half

Posted on 6 November 2012 by jendavid91

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. Early 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.

Now 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.