ImproveCareNow Flare


An issue may seem like an insurmountable mountain, but there is always the other side.

Henry Brittain

Hello! My name is Henry, and I am a 14 year old freshman in high school. I was diagnosed with Crohn’s disease when I was nine. Most people don't know  that I was born in NYC but moved to Charlotte, NC when I was six months old.


Episode 3 of the imPACt Podcast

I had the pleasure of presenting at the Spring 2021 Live Online Community Conference last week on the topic of “Recovering from Flares”. Myself and other PAC members discussed things like: what a flare looks like, how a patient can anticipate a flare and what steps they can take in communicating with their providers and family to avoid serious health repercussions. Our goal was to really emphasize proactivity and empower patients to take charge of their health. 

I'm really excited about this topic and have shared a bit more about it below, including how you can listen as we continue the conversation in Episode 3 of the imPACt podcast this Friday.


Tools To Get Through A Flare

Lexa_F_3.png

My name is Lexa, and I'm 17 years old. I'm currently in high school and I love to travel. I was diagnosed with Ulcerative Colitis (pancolitis) in April this past year.


Social Media Flare

It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.


Sitting In It

Or "The Crystal Ball Method of Informed Consent"

Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

 


IBD flare...a lesson in humility

Flare. It’s a common, yet dreaded, word used by IBD patients.

 

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

 

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

 

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

 

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

 

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

 

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

 

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

 

Saying those simple words is incredibly humbling for me.

 

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

 

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

 

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

 

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

 

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

 

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

 

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

 

Humbling.  All of it is so incredibly humbling.

 

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.


The Kindness Project

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.


27D

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

 

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

 

Jennie with her bag of Twizzlers at the ImproveCareNow Strategic Planning Meeting Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

 

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

 

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

 

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

 

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.Ellie Black the Olympic gymnast signed an autograph for Jennie David on her flight home to Halifax

 

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

 

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

 

Jennie


Kicking Up Confidence

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.


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


1  2  Next →

Built by Veracity Media on NationBuilder