Disclaimer
Writing my story is difficult. Trying to sum up the last ten years in a few paragraphs is seemingly impossible. It has been a long process with hundreds of setbacks but I will let you in on a secret… it has a really happy ending. To understand why I am so passionate about promoting health and wellness through food and fitness I need to share with you just how far I have come. I will share a little more of my story every Monday…I want to ensure that those interested in my story know when to expect it, and those who are more interested in other content can visit the blog the rest of the week. Per usual… Let me know what you think. I love feedback.
The first time I realized there was seriously something wrong I was at karate. I was twelve and in a special class on Friday nights for the students training for their black belt test. I was doing forms and perfecting my technique for my upcoming test. I cried when my dad came to pick me up, and continued to cry the entire way home, saying I was in too much pain to move. I told him he needed to carry me in the house and up to my bed. I have always had a flare for the dramatic so naturally he thought that this little fit was no different. Mom thought I was being hormonal and she sent me to bed with a Midol.
The next morning I woke up feeling like the tin man from the Wizard of Oz. I slowly got out of bed and made my way downstairs. I walked up to my mom and held out my arms. “Mom I still can barely move. Just look at my fingers.” I said. Her response is something I will never forget.
“Oh my god. They look like Grammy’s.”
Mom called my doctor (who had weekend hours) and we were seen right away. My doctor walked in, did her quick exam and said, “This is definitely arthritis. To be honest, I have never diagnosed a child with arthritis so I will need to find you a specialist.” She told me to rotate Advil and Tylenol every six hours to help control the pain and to take it easy.
12 years old; 8 months before I was diagnosed
Several months later, on April 11, 2006, mom and I drove the hour to The Children’s Hospital of Philadelphia. I was in seventh grade and it was spring break. The entire drive to the city I was thinking about the games of capture the flag and run the bases I was missing with the guys in my neighborhood.
I thought this was going to be like any other doctors appointment but when we pulled into the parking garage I was immediately taken aback. Parents pushing large brightly colored wheelchairs with tiny humans in a little seat. The cars that lined every inch of the garage had bumper stickers that read, “Proud Parents of a Cancer Surviver.” and “Osteogenesis Imperfecta Awareness”. There were license plates from all over the country, some from states I forgot about since I was tested on them in the fourth grade.
After mom and I finally founds a parking spot we walked toward the brightly colored elevator. We got off on the second floor and walked down a long hallway. When we got to the waiting room, one that would soon become all too familiar, there was more really sick kids. Kids with feeding tubes and kids with braces around their ankles. I had never seen so many sick children in my life.
When my name was finally called, I had my height and weight taken by a nurse in Winne the Pooh scrubs and neon orange nails. She then walked us to an exam room with a big window and beach themed wall paper. A few minutes later, a man walked in with a beard down to his sternum. He had on a SpongeBob tie, a white button down, light wash denim and white converse. He introduced himself as Dr. Sherry.
Dr. Sherry asked me what seemed like a million questions. He asked about my hair, my energy level and my sleeping habits. He asked me what I felt the moment I opened my eyes in the morning. He asked me how I felt after 20 minutes in the sun and about my activity level.
After the interrogation, he started his physical exam. He pulled gently on the ends of my hair. He moved my body while he examined my joints as my fingers, elbows, and jaw bent. As he moved me he told jokes, his way of distracting me from the pain. In between punchlines he asked me about the pain he could see all over my face. What hurt? When did it hurt? And my personal favorite, describe the pain, as if my twelve year old vocabulary was filled with an abundance of adjectives for pain. He looked at my skin. He checked in my ears, my nose and my throat. He listened to my heart and lungs.
After his carefully examination, he sat down and told mom and I that I had Polyarticular Juvenile Rheumatoid Arthritis (now simply called Idiopathic Arthritis). Which meant I had an autoimmune disorder where my body was attacking most of my joints. He started talking about anti-inflammatories, vitamins and low dose chemotherapy. He told us we would start there and add more medication if it seemed like I needed it. He explained that there is no exact magic formula to treating auto-immune disorders. I would have to try different medications and see how my body reacted to them… most of this however, was lost on me.
I emotionally shut down when I heard the word chemotherapy. I didn’t pay attention to the “low dose” detail. In my mind I was picturing my beautiful blonde hair gone, a long with my social life… at the time I didn’t know I would, in fact, lose one of those things, but it wasn’t my hair.
The drive home was long. Mom had a list of people she needed to call, starting with my dad. To be honestly I zoned out for the first half of the drive. My mind was stuck where Im sure my dad’s was…chemo. After mom got off the phone with dad she called a specialty pharmacy to order my chemo, needles and special containers to dispose of the poison in after the injections.
We drove straight to CVS because we had about half a dozen prescriptions I needed to start that night. My first dose of chemo was in two days I some of the vitamins and medications were to help decrease the expected side effects.
That night, I ate dinner, took the handful of pills Mom picked up for me and went to bed. I had no idea that my life was changed forever. After April 11, 2006 nothing would ever be the same. The way I felt about my body, the way related to my friends, my parents and even my little brothers was completely different. Little did I know, the sunny spring day in April would impact every decision I would make for the rest of my life.
Check back next Monday for the next part of My Story.
xoxo,
K
