ImproveCareNow Jennie_david


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


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


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


Here We Go

As I was driving from Nova Scotia to Boston for school, I tried to think of the first day of classes my junior year. I was struggling trying to remember, and then it came to me: I didn’t go to the first day of classes because my body decided the ER was a better place to be. Nothing like starting off the year on the wrong foot.

 

I can summarize the fall semester of my junior year in one word: awful. I had the classes I wanted to take, everything moved in and meticulously set up in my room, a growing contingent of friends to explore the city with. But luckily for me (irony never gets old), I was entrenched in constant mechanical ileum bowel obstructions and ended up spending 2/3rds of the semester slightly (or okay mostly) drugged and trying desperately to figure out how to get better. And as I write this and think back to that time, it makes my stomach sore and also makes me want to have someone playing a violin in the corner as I recount my sob story. But instead I’ll just say this - that was a semester to survive, not one to enjoy.

 

For a long time I thought that every new school year had an obligation to set loose a varying kind of havoc on my body. Every year was something a little different, a little more challenging, a little more tiring. And before this post turns into a sappy, soap-opera worthy story-line, let me say this: this year is going to be different.

 

I’m (mostly) fixed, having discovered the etiology of my mechanical bowel obstructions (who knew yoga could be so dangerous!) and am absolutely elated to say that I haven’t had an obstruction since December (minus my obstruction in April, but hey I ate about 7 apples so that was my fault). It makes a world of difference having my body back and being able to do what I want. As my boss this summer said, ‘planning is important, plans are useless’ - aka nothing goes according to plan, but learning to swing with the punches and expect issues is the trick. I’m not naive enough to think I’ll be completely honky-dorey the entire semester, or that things won’t be bumpy, but I’m ready for what’s to come.

 

Here’s to the new school year. Here’s to new challenges. Here’s to resiliency, perseverance, and courage. Here’s to making new friends. Here’s to learning. Here’s to hoping the most stressful event of the semester will be an exam. Here’s to my senior year. Here’s to getting back up when you fall. Here’s to scars that remind me where I’ve been. Here’s to health and happiness and hope.

 

Here we go.

 

Jennie


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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