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

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

The Point: Protect Yourself from the Flu

As I write I am coughing and sniffling my way through my first cold of the season.  Since my daughter started school in 2010 I have been exposed to a whole variety of new viruses – especially this time of year.  Speaking of viruses, there’s another kind out there that can make the common cold look like a walk in the park.  The Flu.

The flu is bad enough all on its own, but kids with Crohn’s and colitis should take it even a bit more seriously because the flu virus can stimulate the immune system and that can cause a flare.  One way to take control and help prevent that from happening is to get protected against the flu early in the season.

I noticed just the other day that my local pharmacy has put up their flu shot sign – which means the vaccine is available.  The point:  add ‘flu shot’ to your list of questions for your next visit to the doctor (if that happens to be soon), or call up and schedule an appointment to get your flu shot today.  Getting protected against the flu may help keep you in remission.

Keep in mind: if you are taking medications that block your immune system (such as: prednisone, azathioprine, 6MP, Imuran Remicade, Humira, methotrexate and others – ask your doctor to be sure) you will want to get the killed vaccine (the shot), not the live vaccine (the nasal spray).

You can learn more about the flu shot by reading the Centers for Disease Control and Prevention 2012-2013 Influenza Vaccine information statement.