ImproveCareNow Jennie_david


All or Nothing

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

 

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

 

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

 

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

 

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

 

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

 

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

 

Jennie


Nobody Puts Baby in the Corner (or a Space-Saving Bag)

Today in class, a guest lecturer talked about patients with chronic illness “having to get used to” their new roles as patients. Those words were not the main point of the sentence; they were the words you say trying to pad the time, but nevertheless they were there, sandwiched in between other ideas. It made me think of space-saving storage bags. My grandparents bought them years ago, in an effort to control the umpteen crocheted afghans that had begun to overtake their Florida condo.

There’s a sense of disbelief – or at least at 13 I possessed such a notion – that overtakes you when watching someone demonstrate a space-saving bag. They show you the pile of items to be stored and the nonsensically small bag that the items will supposedly all fit into. No, your reasonable brain informs you, this is impossible; it is foolish, for it seems like trying to fit the entire American population into the state of Rhode Island. But the miracle is performed; disregarding your doubt, the vacuum is hooked up to a special port in the bag, sucking air out and shrinking down the large pile until it is neatly, possibly even comfortably, squished in the teeny space-saving bag. And this is what I thought of, as the speaker lectured, about fitting into bags that can't possibly contain the whole of you - until you shrink.

There is something about being a patient that is belittling, and for the chronically ill, something that is voluntarily so. We comply and save our feelings for favorite books, comfort food, the song that always makes us smile, the memory of our first car, our first kiss, our first failure, plans to travel the world, and whatever else makes us up.  Instead we don the Johnny shirt, shrinking into our own space-saving bag. We become reduced down to our disease; a list of symptoms, a medicine cabinet of pills, a medical record number.

If there is a manual on how to deal with a chronic illness, I missed it. As far as I'm concerned there are no rules, all you can do is live (and trip) gracefully. Yes, it is important for people with chronic illnesses to learn about their illness and to adjust to what it means (read: adjust emotionally not adjust your expectations about your life's possibilities).  But it is also important to be true to yourself.  When I wake up in the morning and get ready for class, or sing along to some favorite lyrics, or tell my parents about my day, or make cupcakes for my roommates; I am not my disease. I am Jennie. I am a girl graduating from college who wishes Patrick Dempsey would marry her - and so many other things. I politely, but fervently, refuse to be put in a space-saving bag, because it’s impossible to shrink me down and after years of being reduced to a diagnosis, I will no longer allow it.

The noun ‘doctor’ comes from the Latin ‘docere’, which means ‘teach’. ‘Patient’, on the other hand, is also Latin but means ‘suffering’. Even if you can manage to overlook the double meaning of patients having to be patient, the roots of the words speak for themselves. But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together – to quote a Taylor Swift song (but of course), “two is better than one”.

So be a little rebellious (if you’re like me, you never really went through the traditional teenage rebellion phase [Mom, Dad, feel free to disagree], you’ve earned it). You don’t fit in a space-saving bag, so don’t bother trying. Be patient with yourself, but no need to be only a patient – you are a teacher, you are incredible, you are a thousand other things, and (in the words of a fellow Crohnie) you deserve a beautiful life. That, my friends, is impossible to fit in a space-saving bag.

Jennie


Follow The Leader

Many years ago now, I was at an IBD conference with several other patients. It was the last day of the conference, and we were sitting in a room, chatting at white-clothed tables with our suitcases at our feet. At 16, I was the youngest in the group by a couple of years - the others were a mix of guys and girls: college-students, with boyfriends and jobs and so on. The moment that is so clear in my mind all of these years later was sitting next to one girl I admired so much and bursting into tears. Alarmed (she had only known me for 48 hours, it was alarming to start sobbing!), she asked me what was wrong. Through my tears and melodrama I blubbered, “I don’t want to go home! No one else understands me like you guys do!”

 

Even though it sounds silly and very over the top, to my younger self, it seemed like nothing had ever been more true. I suddenly had a family of older brothers and sisters who got it, who could coach me from the sidelines and pick me up as I tripped trying to figure out adolescence with a chronic illness. And interestingly, if you asked the group why they were involved, the answer was always the same - so the younger versions of themselves would have the support and encouragement.

 

And it’s true - knowing someone else like you could do it means so much, it’s the I-think-I-can to the I-KNOW-I-can attitude switch, which is priceless. For me, that was the moment when I was suddenly in charge of my life again, and since then I have been fortunate enough to be that support for other people. Having mentors and people to look up to, gave me hope when things felt small and constrained, and in a lot of ways it gave me the fuel to keep going.

 

I am still in touch with my IBD friends from that first conference. Many of them are engaged or married, working and successful, one girl and her husband even have an adorable little boy. Yes, they are still sick, they still struggle to find the balance between patient and person, but they are living and doing an incredible job at it. Their mentorship to me is something that I will never be able to adequately thank them for, so instead I hope that by aspiring to be like them I will make them proud.

 

Jennie


I've Had It Up to Here

I returned home on Tuesday evening, dropped my bag on the floor, sighed, and looked at the pile of clothes still sitting on a table beside my desk and thought, ‘Thanks for the reminder.’ I had been looking forward to attending a great IBD meeting in Montreal this past weekend - planning to, but in the end my unruly body decided that traveling was not a good idea. Consequently, I missed the conference, my friends, and had left the pile of clothes atop that table and spent the past near-week in the hospital.

 

I find that when I’m hospitalized, for the first few days with the nausea and upchucking and pain meds and exhaustion, I’m relatively okay with being in the hospital. Relatively. But then I reach a point, a threshold level, when I’m feeling okay enough or frustrated enough or just as though I’ve had enough and feel the inescapable need to devise my exit strategy.

 

Crawling into my own bed last night, I felt as though I simultaneously belonged nowhere and everywhere. There’s an ease in being transposed in hospital, academic, or home situations that is comforting but alarming. The same habits flood back to me - using my medical lingo (“No an 18 French is not acceptable, please get a 10 French, and I’ll be putting in the NG tube myself, thank you very much”), putting my disease history in chronological order (deciding, as doctors have taught me, what is relevant and what is ‘personal’), reciting my IV speech (“I’m a hard stick, go a little higher or a little lower, but try wherever you think you can get it”), and explaining my ever-faithful teddy bear companion (yes, even at 21 years old). It’s routine. But it’s also disorienting, a feeling that leaves me awake at night, blinking at the ceiling, wondering when the bruises on my arms will fade and knowing that the ones on my spirit may never quite heal. This is not intended to sound fatalistic or depressive, just honest, a feeling that sucks me back to a fetal position regardless of the 9 years of IBD, until I feel like a little girl just wanting to be hugged.

 

A friend, who was at the conference that I missed, was texting me today and asked me how I was doing. Throughout our conversation, he asked me if I was taking it easy and taking care of myself. I replied that I think we both do a much better job of taking care of others than taking care of ourselves. I’m the first one to hold someone’s hand, to hug them, to offer company to the hospital or an equally difficult/upsetting task, yet the last one to ask for my hair to be held back as I vomit. And luckily for me, I have friends who do not ask (because they know I’ll politely decline) and help me out anyway and I love them for it.

 

Similar to my reaction to the over-sized NG tube, sometimes that tantrum of “It’s just NOT FAIR” bubbles to the surface. And that’s okay, even if it feels like something I should’ve gotten over. When I’ve had it up to here, near-tears and all, the comfort of having people who ‘get it’ is immensely helpful. I don’t have to explain myself to them, and it makes me really believe that there will be more conferences, more opportunities, despite the pain and frustration that accompanies any chronic illness.

 

My only advice when it comes to ‘having-it-up-to-here-moments’: eat a cupcake (if tolerable), stare at a picture of PDemps for a while, listen to a favorite song, dig up your old yearbook and reread notes that make your heart warm, hug someone, and remember that there are always people in the wings waiting to catch you.

 

Jennie


Never Say Never

Under normal circumstances, I would avoid quoting my fellow countryman Justin Bieber in the title, but this my friends is anything but a normal circumstance. You see, I have set a record for myself. I went the entire semester without being in the hospital.

 

My first thought, ‘Is this what college is supposed to be like?’ Answer: apparently. Who knew. I managed to forgo my frequent flyer status at the local hospital (after all, the rewards are less than desirable, I’ve already ‘won’ enough scars to last me a lifetime) and get to all of my classes. I didn’t miss a class for feeling sick - instead I missed a couple of classes for attending an IBD conference and running a half-marathon. Sure beats my ‘sorry-I-decided-to-live-in-the-hospital-now’ line that has accompanied every semester.

 

My parent’s reaction to this: IT’S ABOUT TIME (yes, the feeling can only be expressed in caps). This semester has been full of college firsts - having a kitchen, living with roommates, starting my senior thesis. I think of my roomies, we’ll call them Maya, Mimi, and Ana, and can’t remember a time when I didn’t come home and see their faces, grinning at me, or bake them cupcakes or have silly dance parties to Disney songs. I felt this kind of way after my ostomy surgery a couple of years ago, like the reset button had been pressed and all of a sudden I was turned out bright and shiny (quoting Grey’s Anatomy, but of course).

 

If things were always sunny, I wouldn’t know any different. But when things are dark sometimes, it's nothing short of glorious to open your arms wide and squint into the sun. Not metaphorically, having had a rough go of it for my freshman through junior years, it means all the more to me to have had a wonderful fall semester of my senior year.

 

But this is not to say that challenges are not hiding behind my closet door and under my (impossibly high) bed (note: the bed is very high, I have a stool to propel me atop it). My small gut is dotted with grumpy ulcers, ready and waiting it seems to rain on my beautiful parade. But now it’s different - I have a say in my care, an absolutely wonderful GI, roommates and the best of friends who are all to willing to pick up prescriptions and keep track of what I’ve eaten during the day (“Jennie-fer, what have you had to eat today?” note: ‘Jennie-fer’ is my name for when I’m ‘in trouble’), and just be there and not talk about IBD or bowels or bags and just be 21. Of course sometimes I’m scared, sometimes there are tears, and sometimes I am angry that my body will never give me a break.

 

But more often than that, I am so very happy to be where I am. The other day I was standing in my living room on the phone with my Mom, and had this thought:  ‘Wait, how did I get here?’ The sheer fact that I’m a college senior, without any medical leaves: who's had two surgeries and extensive hospital stays, made me wonder how it all happened. And here’s how - with a lot of help. My parents, my friends, my professors, the disability office on campus, and my doctors. My education has and always will be, if I am so lucky, a communal effort. There is no way to thank everyone, all I can do is try and keep running as fast as I can toward my dreams.

 

Life is big and giant and arguably impossible and overwhelming at times. Maybe you feel like you can’t do something all by yourself, but the thing is there’s no reason you should have to do anything by yourself. There are so many others who love you and who are rooting for you on the sidelines (if you can’t hear them, maybe it’s just that your thoughts are turned up too loud). You can do it.

 

Remember, in the wise words of Justin Bieber - never say never.

 

Jennie

 

[Editor's note: Original post featured on The Gutsy Generation.  We made a few minor edits for clarity and to include links to other posts by Jennie, which you'll enjoy.]


One More Time, Just For Kicks

[Editor's note: posted originally on The Gutsy Generation, Jennie has shared One More Time, Just for Kicks with LOOP.  Enjoy!]

 

What would be the fun if things were easy? I prefer the harder, circuitous route that takes you a thousand miles out of the way only to end up a step behind - clearly the more enjoyable path.

 

I’ve since lost track of which stories I’ve employed as metaphors, but alas I shall tell another in the hopes of demonstrating my point. When I was about 9 I was sledding with a friend on this big, enormous, wonderful hill (that seemed like a mountain at the time) near my house. The short of the long story was that there’d been an ice storm that day before and the hill was slick and frozen. Regardless we still thought it was a good idea to sled, and we climbed in this big purple Rubbermaid sled (goodness knows why Rubbermaid made such a sled, but I’ll have you know it was quite hefty and heavy), her behind me, and pushed off. Needless to say it wasn’t the smartest idea to be sledding in such conditions, and soon enough we flew off a bump, did a 360 in the air, then I landed on the ice chest first, then her on top of me, then the big ol’ purple sled and all we could hear as we moaned and slowly slid down the hill was my Mom screaming at the top. When I decided to have ostomy surgery a couple of years ago, I did so knowing that I would still have Crohn’s, still have a chronic illness, still have medical decisions to be make, but it was a big step in treating and addressing my disease. And it was. I don’t for the smallest fraction of a second regret my choice. IBD treatment has been described to me as ‘step up’ treatment (ASAs to steroids to immunosuppressants to biologics to surgery) and by all accounts a complete protocolectomy at 19 was the most aggressive treatment possible. But now as I sit here with a flare-up, it feels like I did when I landed on my chest on that icy hill - the you-have-got-to-be-kidding-me-this-is-ridiculous kind of head-space. Even though I know it’s not true logically or medically, it feels like I’m back in the same place as I was before surgery making these difficult decisions about difficult medications.

 

It’s kind of funny - I’ve never had a flare-up without my colon before. To quote Aladdin, it’s a whole new world. Don’t get me wrong, it still sucks and hurts and seems particularly unnecessary and unpleasant. But I’m not running to the bathroom, and all of my colonic symptoms are only memories. I know for my parents they hoped - with good reason - that my surgery would be more or less the final event in my IBD journey, at least for longer than two years. I can sense their disappointment and frustration on phone calls, just as I feel disappointed and frustrated at times, but I know that I have their support about whatever treatment I choose (to this point my Dad informed me that my Mom and him were “100000% behind me”).

 

It’s kind of like when you’re somewhere and you smell something that seems familiar but it takes you some time to place it - having a flare and being ‘sick’ again is a transition that I’m getting used to. After standing on my soapbox about taking your time with medical decisions and so on an so on, it’s about time I take my own advice.

 

I just have to hold on, and close my eyes for the scary parts if I need to. Here we go.

 

Jennie


Shoulder to Shoulder

A children’s hospital is, at its core, fundamentally different than an adult hospital; not better or worse, but different. My memories of my pediatric hospital include bright murals running down the halls, butterfly-shaped wards, having the Easter bunny visit when I was an inpatient, and a box full of finger-puppets courtesy of the blood lab. I was still sick, but there was a very intentional way that my parents were involved, like extra chairs in hospital rooms for family to dish out opinions and help decide. The first time I was in the adult hospital my Mom cried. The hospital room was beige, had four beds, and was wholly adult while I still felt like I was trying to grow up.Hospital Beds

 

When I was transitioning to adult care, I had a singular ‘transition appointment’ where I was supposed to magically become an adult (this, however, did not happen). It’s kind of like if you want to get from point A to point B with a dozen eggs - you should probably keep them in the carton to transfer them, versus spilling them into the bag without protection and ending up at point B with a bag dripping with yolk.

 

That’s why it’s so exciting to be talking about Patient Activation. Just as the name suggests, the goal is to help patients and their parents become more active and engaged in their medical care. If you want to go to Spain and speak fluently, you need to do more than buy a dictionary – you need to practice.

 

Currently, the Patient Activation intervention is capitalizing on something patients are really great at – using their phones. Participants receive texts on a weekly basis with a question about their health status and when they text back, the answers are saved. And then all of their responses from the Inter-Visit Planner are aggregated and given to the participants and their doctors. What’s so cool about this is that participants and doctors are entering an appointment with things to talk about, which help everyone make better decisions about their medical care.

 

Another really interesting part of this intervention is the Patient Status Tracker, which helps translate medical language into accessible English. I can remember sitting in appointments when my doctors would talk to one another and I had no idea what they were saying, even though I was sure they were speaking English – medical lingo is hard to understand, especially when it comes to test results. The tracker gives participants an insight into their care through visualizations of test results and plain language.

 

Growing up is hard. All of a sudden it’s a lot to be responsible for, but when one of those responsibilities is medical care for a chronic illness, it’s all the more important to have the necessary skills and support. This way we can truly stand shoulder to shoulder with our doctors, hand in hand, to make the best decisions for ourselves and our diseases.

 

Jennie


Ginger.io – the ‘Psychic’ Phone

When I was in a flare when I was little, my family could tell even if I was trying to keep it a secret. Sure, there were the usual signs like going to the bathroom more and not eating my whole plate at dinner, but my parents could tell I wasn’t feeling great depending on how frequently I used to heat up my magic bag.

 

Clearly I wasn’t going to be a world-class spy, I gave myself away too easily.

 

Patient reported outcomes (the good ol’ “How ya doing?”) are notoriously unreliable – we’re not always 100% accurate when asked to recall specifics about how we felt in the weeks leading up to an appointment. Passive patient reported outcomes are still reported by the patient, but in a way that taps into a behavior that has the possibility to tell our doctors something about what’s going on with our disease.

 

Since the summer, I’ve been a tester for Ginger.io, an iPhone app that does two things – 1) helps me keep track/think about my disease 2) tracks my movement (as per location settings) and records my phone’s activity. Now before this sounds like 1984 and Big Brother has come to the world of IBD, the idea is that my behavior will provide insight into how I’m feeling. For example, when I’m feeling really icky and just want to stay in bed and watch Grey’s Anatomy all day, I’m a) not moving a lot b) probably not calling a lot of people c) probably only texting my IBD friends if anyone. When I’m feeling great, I’m running around campus, checking my email, and doing lots of things on my phone. The intervention’s goal is to describe the connection between behavior (as measured by communication and movement patterns) and health.

 

Its quick and easy, a perfect couple-minute activity to do when I’m on the bus going to class or waiting in line. These are some screenshots from my phone to show you how easy it is to use.



Interested? You should be! If you have Crohn’s and an Android (yes, Android - there is a need for Android users to test the app currently) smartphone, go to http://ginger.io/join/c3n/ to sign up!

 

Jennie


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


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