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.
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
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