Category: My Story

During the summer it was easy to pretend that I wasn’t sick. I could make up excuses for why I wasn’t playing manhunt or run the bases when my body wasn’t strong enough. Sleeping until noon was normal for any 13 year old so my days in bed weren’t viewed as strange. I even went to a camp for other kids with Arthritis, but I still wasn’t excepting of my disease. I wasn’t like those kids. I didn’t wear my disease on my sleeve (yet) so there was no point in me being there. Those kids seemed to enjoy being sick and most of the time it felt like they were battling it out for who was the sickest… a fight I would gladly lose. I didn’t have the same war stories they did and I didn’t want them. I wanted to be back home where I could talk about shopping and nail polish instead of pain and pills.

The best part about that summer was I could hide. I was too young to drive and my parents both had big important jobs so they couldn’t drive me to my friends houses whenever I pleased. I always was able to come up with a believable excuse to stay home when I just couldn’t handle leaving the house.

Then school started.

There was no denying that I was different. Yes, everyone had heard of my diagnosis, but it wasn’t real until September. All of a sudden I was never at school. I was always coming down with strep throat or a stomach virus or a stupid cold that would knock me on my butt. My immune system was shot and couldn’t handle middle school germs. There were weekends where chemo got the best of me and there was no way I could make it through the school day. On top of that, my joints had never hurt more. Being sick was all I could think about and I was starting to understand all those kids at camp. My life started revolving around my disease. I felt trapped in my house and confined to my bed because well, I was.

I was falling behind in school both academically and socially. Most of my teachers were understanding (one however was not). I had a tutor come to the house a few days a week to make sure I was getting the vital content to pass the grade. I was lucky enough that my tutor was the learning support teacher. She was my number one cheerleader and my voice at school (outside my parents of course). She would spend her entire weekend with me teaching and testing me. On my good days, the days I actually went to school I spent the day in her office. I wasn’t exposed to as many germs, plus going to my classes where I was super behind was equal parts humiliating and devastating. On my bad days we would work at my kitchen table or sometimes even in my room. I can’t thank her enough for all that she has done for me, Mrs. Todd if you are reading this, Thank you so very much.

Around this same time I had a visit to see Dr. Sherry, I told him about the pain and how it was only getting worse. I told him about how much school I was missing because I was always sick. Like I had said before, treating chronic illness is a guessing game and we had gotten the formula right yet. After another head-to-toe exam complete with a comedy act, he sat down.

He told mom and I that the handful of drugs I was currently taking were just not enough. He added in a biologic drug. This medication meant two more shots a week (that is three if you are counting, plus the dozens of pills I was taking a day). I already hated my chemo shots, the last thing I wanted was more. I felt as thought I just couldn’t win, I was so fed up with the seemingly never-ending changes that I cried. The only place I allowed myself to breakdown and feel sorry for myself was the hour I was at the doctors every three months. Everywhere else I was strong and a fighter. I was fine outside the hospital walls but inside them I was constantly waiting for the other shoe to drop, which it seemed to always do. I cried until the nurse handed my mom the information packet on my newest treatment. They I pulled myself together and walked through the halls to our car with puffy, reddened eyes. I put on my sunglasses and took a deep breath as we exited the parking garage. If I could handle everything I had so far two more shots wasn’t going to break me.

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I hope you guys had a great start to your week! You know I love Mondays. I am trying some new workouts this week and a new nutrition plan that I cant wait to tell you about. I have been adding in a 40-ish minute walk to my morning routine and it totally sets the pace for my entire day. I hope you enjoyed the next piece to My Story… during next weeks posts things start to get a little crazier. It is very Real Housewives meets Gossip Girl. You don’t want to miss it.

xoxo,

K

Happy Monday!! Sorry I have been MIA this weekend! It has been a busy one filled with working, celebrating the worlds best dad and a lacrosse tournament. Before we get into the next part of my story, I wanted to take a second to thank my readers. Never in my WILDEST dreams did I expect all of the love and support I received. I cannot believe how many people took time out of their lives to look at my blog, and I was elated to 50% of you come back for more. For the first week, I couldn’t ask for more. So, I thank you from the bottom of my heart!

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April 13, 2006

My entire family was headed down to CHOP. Dad was going to ask my doctor a million questions, mom was going to learn how to give me chemo and my brothers were along for the ride. This time I felt more calm. I knew what to expect. I knew where the parking garage was, how to get to the waiting room and what my doctor looked like.

When we got there Mom and I showed the boys the way. When we got off the elevator and walked down the long hall towards the waiting room. This time there were no patients, no kids in wheelchairs, no babies crying. It was silent. The nurse greeted us and walked us past the hall where the exam rooms were. She walked us through two huge double doors where all of the doctors had offices. Because there were five of us, she sat us at a table in the hall and went to tell my doctor we were waiting.

Dr. Sherry, this time wearing a Veggietales tie, came out of his office to meet us at the table. He introduced himself to my dad and the boys. The boys sat on the floor listening to their Spongebob Walkmen while the three adults and I sat at the table.. Dad pulled the list of questions he typed (he didn’t have time to make a PowerPoint)  out of his folder and handed a copy and a pen to each of us. Dad, being the businessman he is, expected a game plan, an execution strategy and a drop dead date for my cure.

Every question my Dad had, my doctor couldn’t answer. Unlike business, medicine is a game guess and check. We try one medication, one treatment, at a time and adjust as we go. There was no cure, only symptom management. My doctor was able to give statics, but no real answers. He had no way of knowing how I would respond to the typical treatment. Dad was becoming more frustrated, but luckily for Dr. Sherry, we had another appointment to get to.

Two days before, in the blur that was my diagnosis day, we agreed that I would be in a study. They were looking at the DNA of children with arthritis to isolate the gene that is altered. I had to have blood drawn before my first dose of Methotrexate. A representative from the study met us outside the giant doors and led us through the halls of the massive hospital. We took countless twist and turns down hallways, two different elevators, and walked through dozens of doors to get to the room where they would take my blood. Mom and I went in to a room with oversized lounge chairs and Princess stickers on the wall. An Audrey Hepburn movie was on a tiny TV. Mom and I filled out paperwork. I signed my name more times than I could count. They took the handful of tube of my blood they needed and we walked the ten miles back to my doctors office, this time, to an exam room.

A nurse I have never seen before came in teach mom, dad and I to give me shots. She handed me a circle with tan plastic ‘skin’ to practice on. She watch as I drew back fake medicine and injected it into the ‘skin’. Then it was mom’s turn. After a few practice tries, the nurse demonstrated on me, with real medicine. My first dose of chemo. The poison burned as she pushed it into my skin. The nurse put a bandaid on the barely-there mark on my arm, smiled and asked if we had any questions. She reminded us that no pregnant women could be in the room where we kept the medication, how to dispose of the needles and sent us on our way.

After being poked and prodded, mom and dad said the boys and I could have a treat, McDonald’s. We were rarely aloud to have it so we jumped at the opportunity. After a quick lunch, we found our way back to the parking garage to being the drive home.

Several hours later reality hit. I was on chemo.  My mouth was full of sores. I was throwing up uncontrollably and the pain was almost unbearable. My stomach felt like it was being torn apart and there was nothing I could do to stop it. This was my treatment. This was supposed to make it all better. I remember laying in my bed sobbing. My mom was in my bed with me, rubbing my hair. That was the first time I ever saw my mom cry. That was the first time my disease was real. That was the night my innocences was lost…the world was no longer unicorns and rainbows. There was pain and disease and heartbreak. I asked my mom “Why me?” and she couldn’t answer. There was and is no answer. No one is immune to life and this is part of it. I cried myself to sleep that night.

The next morning I learned the real definition of exhaustion. Nothing feels like the morning after your first dose of chemo. I stayed in bed all day because my body was too tired to move. I spent most of the day crying and sleeping. I didn’t want to eat. I didn’t want to talk to anyone. I wanted to be alone.

My mom let me cry it out until the following morning. On the second day, she came in my room, opened my curtains and told me to take a shower and get out of bed. I didn’t have to leave the house but I wasn’t allowed to sit in a dark room and feel sorry for myself. This was my new life and I could either embrace it or become a victim to it, and one of those wasn’t an option.

That was a defining moment in my life. Mom brought me back to reality and helped me become a fighter. I couldn’t change my situation, but I could change the way I handled it. I learned, at twelve years old, that it isn’t the things that happen to you that define you. It is how you react, learn and recover. I know now, chemo wasn’t nearly my biggest challenge or the hardest thing I would go through. Chemo taught me to be strong when I was weak and that everything (good and bad) is temporary.

Alright girls…I have to go to the gym and make lunch before work. I will have a lot of good stuff on the blog for you this week. More recipes, work outs and OCD organization tips. Don’t forget to follow me on social media so you don’t miss a thing!

xoxo,

K

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.

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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