Days before Christmas 27 year old Kayla walked into her doctor’s appointment for her routine Remicade infusion — therapy used to help keep her Crohn’s disease symptoms at bay, when nurses told her that no infusion would be happening. She had an infection.
Panic set in.
Her toddlers Jackson and Joseph, whom she fondly calls her miracle babies, expected her to be home for Christmas.
After an examination, doctors found that she had a “pocket or abscess” between her skin and small bowel, which her routine treatment might exacerbate. At the same time, having been on Remicade for three and half years, she knew the unpleasantness of the withdrawal symptoms.
Her babies, and reason for pushing ahead stayed at the fore of her mind.
“I guess the long and short of it, is that they make me better. I would give anything to protect them. They force me to turn away from the pain and be with them,” she says.
A seven and a half hour wait at the hospital, a frantic search for last-minute pre Christmas appointments, an insurance nightmare and an MRI later, Kayla ended up at home with antibiotics but not her usual Remicade.
“I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry,” she penned on her new blog started as an outlet to help her cope.
Juggling life and finding inspiration
Crohn’s disease is a long-term condition that causes inflammation of the lining of the digestive system. Kayla also lives with a string of chronic health conditions —Fibromyalgia, Scoliosis, Anemia, TMJ.
“I started having symptoms when I was 11, but I wasn’t diagnosed until I was 17. I didn’t have much support, and to be honest, I believed myself crazy. I had to have a partial bowel resection, and a temporary Ileostomy bag at 20.
“When I got pregnant with my second son, they told me to make a choice, IV infusion Remicade, or my pregnancy. I chose my son.
“I have struggled my way through two pregnancies, while working, and going to school. I wanted my kids to believe in the notion that you can be anyone, do anything,” she says.”
Juggling the demands of daily life with a family and a two hour commute to her full time job as a Court Assistant is no easy feat. She must squeeze 40 hours work into four days to allow time for her infusions.
“Between life, work, and the bouts of flares, I never seem to have enough energy.”
But Kayla makes it happen. Here, inspiration is in no short supply from her babies and husband— a childhood crush she first met in second grade, and whose path crossed with hers later as adults.
“My husband and kids are the miracle I never imagined I would find. It is tough to work an eight to five with a two hour commute, volunteer, be a wife and a mother, all while getting infusions and managing all that goes along with auto-immune diseases.
“My kids, they keep me moving forward. I also find inspiration in song lyrics, quotes, holding hands, kisses on the cheek, and in humanity. I find that I want to be better, do more, be more,” she says.
Hopes for the future
Kayla has an Associate’s Degree in Paralegal Studies and a Bachelor’s Degree in Criminal Justice Business Administration and Management. She is also working towards becoming a state certified mediator.
“I have a lot to be thankful for, falling in love when I was determined to be alone. Having my kids, despite all the odds and roadblocks. Graduating with a Bachelor’s Degree, and starting a career.”
I ask her how she copes with the unpredictable and turbulent world of chronic illness.
“‘Faith trust and pixie dust’ most days! (she’s a Peter Pan fan). It’s getting harder as they get older. To hide the pain…sickness. Sometimes it feels impossible to take take care of myself, yet the boys need to eat. They need baths, and love. They need to be little boys.
I started blogging a few months ago, to lessen the burden. Now it sort of feels like a life line! It’s been a struggle, but I want my kids to know they can truly do anything.”
Life with chronic illness has been fraught with difficulties but Kayla has learnt much too.
“I spent so much of my adolescent years undiagnosed that I stopped believing in myself. Over the years I have learned that trusting yourself, your instincts, and your experiences, is key. Be an advocate for yourself. Click To Tweet
“There have been so many moments over the years that have taught me about myself and helped me move towards my future but the moment that stands out in my head, is finding “Team Challenge,” (an endurance team training programme). It was the first time in my life that I didn’t feel like I had to hide who I was. I got to be free of shame and guilt.
“My biggest hope for the future is a cure. Beyond that, the will and fight to keep going. I want more than anything, to see my boys grow up. Every skinned knee, school bake sale, or team event. I want to be there. I want to know them, watch them fall in love, and see the men they become.”