Kayla

Life is personal. It is raw, real, our connection to the world. I believe our experiences make up our foundation, our essence. When Coach Marc, reached out to me about sharing my story, I felt incredibly honored. If my story… my truth, helps someone – even just one person, I am in.

Growing up, I always hated the idea that my illness(es) would define me. Now… I am okay with it. Let these diseases define me; let the world see that underneath my artfully crafted exterior is a girl set on finding a cure, beating the odds, and defying that which “defines,” her.

I started having IBD symptoms when I was 11. I spent my formidable years in and out of pain. Suffering symptoms that made no sense. At times, I thought I was insane. People convinced me that I was making my self sick. No one believed me; not even family. Doctors could never find anything wrong with me and tests never showed anything conclusive. I finally got diagnosed in 2008, months shy of my 18^th birthday. I would like to say life got easier, that learning my symptoms weren’t mental, helped. It did not. With a diagnosis came pills, lots of them. With the pills came depression, and more doctors. With the doctors came financial obligations strapped with suitcases full of other problems.

At 12, I lost 50 pounds over the summer and did not understand why.

At 14, I got dirty looks for needing ultrasounds. Repeatedly.

At 15, I was told “I was a spoiled rich kid with nothing better to do, than waste everyone’s time.”

At 17, I was diagnosed with slight iron anemia, days before being admitted to the hospital for a 2-pint blood transfusion. A biopsy during this hospitalization is what ultimately led to my diagnosis. The first one, anyway.

At 20, I was 80 pounds and barely holding it together. I lived off crackers and Gatorade. I could never keep food down, had lower abdominal pain constantly, and was hospitalized with an abscess. I spent a full week in-patient and needed a feeding tube. I have clarion memories of that bedside PICC (peripherally inserted central catheter) line procedure. I remember the ice-cold sensation that cascaded down my arm. I remember it feeling wet, like something was dripping down my veins. That was July. By end of August, I was on an Ensure only diet. The end of October, left me peeing blood and in so much pain that I did not know if I would survive. Or if I even wanted to. I scheduled a doctor’s appointment, which led to an emergency CT scan. Before I was even home, results were in and I was referred to a colorectal surgeon.

I can see images from that day, the surgeon pushing a Kleenex box my way, sitting on a lone bench in a ginormous clinic all alone, crying. I can even see the drawings he did to describe what would happen next, but the actual words? They escape me. In essence, he offered me a “choice” between life changing surgery or months to live. I felt like a victim. I was angry, I was afraid, and I was alone. I went through with the surgery, but not as a survivor; not even as a girl who yearned for a future, but as a kid who was faced with an impossible choice. Being sick to me, is as normal as breathing. I did not know any different. 20 days after that appointment, I had the surgery – a temporary Ostomy and partial Colon resection. About four months later, I went through a second and consequently third surgery for the re-anastomosis, (attachment) surgery. I died on the table. Doctors were able to revive me. I did not understand what a gift I was given, not until much later. Recovery sucked. I remember catching Swine flu in the hospital and being quarantined. Mostly, I remember the way the March cold frosted the glass window in my room. I remember watching the seldom visited, traffic light below me. I watched as the green light turned to red. There was a sterile finality to it, that still haunts me.

At 23, I had a bowel obstruction at 30+ weeks pregnant with my first child. There was nothing anyone could do for me, so I toughed it out.

At 24, I got pregnant with my second child and was told I was too sick for the baby to survive. They suggested an abortion. I suggested they find another way. Without a second thought, I started an IV infusion biologic, Remicade. Although the medication itself had been around for a while, there was limited data on pregnant patients. A fact my doctor made clear when he said, “you might start the medication and lose the child anyway.” I prayed a lot. Mostly, I prayed for enough healing to protect my unborn son. He survived. We survived.

At 31, after 7 years on IV infused Remicade, a lifetime of IV insertions, and too many blood draws to count, my veins were shot; they had a nasty habit of collapsing, or rolling, due to scar tissue. Even though I spent years internally grappling with the idea of a port-a-catheter, which essentially is a disc under your skin in the that chest area that is used for intravenous medications, nutrients, or blood draws – I made the decision to schedule the procedure. Less than two months later, the Remicade failed, but not before giving me medication induced Psoriasis.

Amongst the years, my life has been riddled with sleepless nights, ER visits, hospital gowns, pharmacy visits, falling asleep on the bathroom floor, aching joints, blood, tears, inflamed insides, stress, anxiety, anger, isolation, new diagnosis, and the knowledge that I turned my best friend into a caregiver.

I could go on about the off the charts unbearable pain, the thousands of steroid pills I have ingested, or the nights when the tears burned hotter than the sting of the cold bathroom tiles biting into my skin, but I think you get it. IBD is so much more, than the sum-total of its parts. I am so much more.

I read a lot, I am never pop culturally relevant, and nine out of ten times I do not pick up on proper social ques. I have had to develop a thick skin and learn to laugh at myself. I am an over anxious thinker and worrier. I spend so much time stressing and wondering what if, that I often miss out on the best the world has to offer. I rarely see outside the black and white. I feel uncomfortable in my own skin. I cling to my loner status as a form of protection. I hate caring so much what people think. I never feel good enough. I want to be accepted. I want to fit in. I want to belong. I feel alone in a crowd. Guilt consumes me. I live in a world of fiction and fantasy. I believe in the magic of a good story, but not because of the happily ever after. I like knowing that the dragon can be slayed, that evil can be destroyed, that the days I fight my hardest are not done so in vain.

I found that magic, in Team Challenge. I found people that understood me, that believed me, believed IN me. I remember crying the whole way home, after my first team practice. I had found a home. A place to belong. It has taken me years of self-hatred and shame to fall in love with myself, something I am still working and learning how to do. Finding my TC family has been instrumental in my healing process. I am a better person because of them. They opened a space inside my soul that I thought was sealed. More than just love and support, they showed me how to be myself and share who I am without shame or guilt.

At 32, my story is on-going. After a six-year battle, I finally found the elusive R word; remission. Only to learn recently, that I might be failing another medication. I have been scoped, scanned, poked, prodded, tested, needled, and pumped full of so much chemicals and dye that I often do not know where I begin and the medication ends. Despite all of this, I will keep on fighting. For my kids. For my team. For people not yet ready to share their story. For a cure.

The point in all of this is, often when I think the world is cold and cruel, I blink and realize this life I am living, is anything but. I might not be the model patient, or save the world, but for the first time in my life, I am proud of me. I fell in love with my second grade crush, that deep in your soul, shout if from the roof top, write a sonnet love, that I thought only existed in fairytales and Hollywood. After being told I would never have kids, I had two. Two crazy, full of energy, wily, smart, and handsome little boys. I went to college, graduated with an Associates before going back for a Bachelors. I found a calling, and believe my current job is the career I never knew I was looking for. I have lived and continue to live well. The hard times are surrounded by the good times and as hard as it might be to believe, I am astonishingly grateful for my life. IBD is tough, but so am I.

Marathon #67 – Recap