Tag Archives: patient

First and Last

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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

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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.

Pecan Court as described by Sami 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.

None of Your Business

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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

Superman Syndrome

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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

The Great Zip Line Misadventure of 2012

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I hardly consider myself an outdoors girl, but for five days this summer, I volunteered as a summer camp counselor for twelve to thirteen year old girls. We roasted marshmallows, performed in a talent show, and competed in “Camp Olympics.” The campers, aged seven to seventeen, were as enthusiastic, active, loud, and curious as any of their peers at typical summer camp experiences around the country. Yet, Camp Oasis is not your typical summer camp experience. All eighty campers had Crohn’s Disease or Ulcerative Colitis. Although I’ve lived with Ulcerative Colitis since fourteen, I had not experienced Oasis, but I know firsthand the value of camaraderie among young patients and fell in love with friends’ descriptions of Oasis’ impact on young patients. I believe every child should experience camp, but camps that serve chronically ill kids provide them with especially extraordinary experiences. That first bite of a roasted marshmallow tastes just a little bit sweeter to a kid who’s been NPO or on a liquid diet. The kid whose medical chart outshines their personality on a regular basis shines just a little bit brighter on stage. For the kid who has more hospital bracelets than sports trophies, “Camp Olympics” means just a little bit more. We give the campers the reins at camp, and the medical staff stay in the background, and that’s a freedom every young IBD patient should experience. It’s impossible not to look around you at camp and feel crazy lucky, even in spite of the disease that brought us all to a tiny rural town in Missouri.

I’d heard from friends at other Oasis camps that the zip line is considered the defining Oasis activity, and since counselors are allowed and encouraged to participate in activities with the campers, this was an activity I was also eager to try, if for no other reason than to say that my first summer at Oasis included that defining zip line moment. I felt like a proud momma watching every camper in my group conquer that wall and the zip line, which made the blow all the stronger when I didn’t. For a few seconds, it bothered me; here, all my twelve-year-old campers had made it up while I had succumbed to the pain. After pepping them up for this the whole week and encouraging them not to give, I had given up. I felt as if I’d let those kids down somehow as a role model, in hindsight a misinterpretation of those words. I didn’t get that defining zip line moment, but the self-pity was short-lived because it was replaced by an ah-ha moment. Through all this reflection over the kids succeeding where I had fallen a bit short, I realized that somewhere during the week, I’d stopped thinking of them as sick. I’m not quite sure how to express the magnitude of this realization. For years, I refused to attend Camp Oasis because I considered it a camp for sick kids – and yet here I was, there in the middle of Missouri at so-called Camp Whiny Sick Kid, and the last words I’d have used to define those kids were whiny or sick. Even the two girls in our and the adjacent bunk who needed to leave for medical reasons were anything but whiny; not to perpetuate the ridiculous stereotype of sick kids as heroes, but those girls were tough. Like I said, I maybe felt sorry for myself not making it up that wall for about three and a half seconds, and then I was over it. My defining camp moment didn’t come on a zip line like I expected; it came on the ground beneath it. Not only had I pushed myself harder than ever before to hang on to a rock wall, but I had finally been able to push past a label I’d stuck to Oasis four years prior. I absolutely expected to look at these kids and see “kid on Prednisone” or “kid who had ostomy surgery,” but instead I saw them as just kids at camp and often forgot why we were all at Oasis at all. I didn’t physically land in a harness in the middle of an open field – but mentally, I landed somewhere so much more personally significant.

I believe that’s the beauty and power of Oasis. It may be a specialty camp for IBD kids, but it’s so easy to forget why you’re even there. And once you leave, it’s hard to imagine not going back. The lessons I learned in those five days are innumerable, but perhaps the most significant was the reminder of the first piece of advice to come with my diagnosis: IBD, whether mild or severe, should never define a personality. I’m so thankful Camp Oasis is around to help the next generation of IBD kids learn that too – and remind some of us older kids of what we ought to remember.