Part Two of Unique Me

     At the point of diagnosis, crutches became a permanent part of my life (they had been a stand-by for the previous six months, but now they weren't optional). Talk about a pain in the pits, these things can be lethal and no where near fashionable. However, since they ended up being a part of my wardrobe for nearly three years (yes, I said three followed by years), I learned how to dress them up a little bit. Decorate for holidays, get autographs, use them for purposes other than what they were intended for :) However, I digress. Appointments at Riley were happening on a monthly basis and my next appointment post-diagnosis was the day after my first day of seventh grade. Trust me, I wasn't ready for this appointment, it was far from routine.

     We showed up at the clinic early to receive my orders for blood work and x-rays. Since I was on such high doses of anti-inflammatory medication, my blood counts had to be checked on a very frequent basis to make sure that my vital organs were still functioning properly. I felt like a human pin-cushion, especially on the days where a 10-vial draw was a necessity, but the tests were important and saved me more than once! I was also becoming a pro in the x-ray department...I knew exactly what views they needed, how many times it would take to get a clear picture, and how embarrassed I would become when they would ask my about my ovaries or if there was a chance of pregnancy.

     When we finally met with Dr. Kling and his staff, they informed us that since I was such a rarity, treatment was a difficult path to prescribe. There were procedures that could be done to check the severity of the joint, but it required general anesthesia and potential surgical components. However, there was one option that stood out above the rest and would be the non-surgical option to gain some rotation within the hip. I wasn't a candidate for a replacement or other non-exploratory surgeries (like the one above) because I was still growing and for a second strike, the nature of my disease could actually eat the replacement joint. My option...an extended stay at Lifelines Childrens' Hospital in Indianapolis. I would receive specialized physical and occupational therapy, nursing care and constant monitoring. Doesn't that sound like a load of fun? My thoughts exactly! The day was Thursday, my reservation had been made for Monday morning.

     I plan on dedicating an entire blog post to my time at Lifelines, but it ended up being a one-month stay in a place that was basically a nursing home for children. My life and the life of my family had been put on-hold. Everyone took turns staying with me, wiping my tears and being the face of courage when I was at my lowest point imaginable. I endured 12-14 hours of physical/occupational therapy each day. They had to create a traction unit out of my shoes in order to stretch my hip properly...I had to use it everyday and then sleep in one similar to it every night. I had to be placed in certain positions and strapped to bolsters for an hour at a time...I remember screaming at the top of my lungs due to the intense pain. It got to the point that no one was allowed to be in the room with me during "position time" because I would beg them to unhook me and not tell the nurses. I would eventually become calm, but at that time, nothing could compare to the pain. I was blessed with an abundance of cards, care packages, flowers and above else, love. I had friends that would come and visit and just climb in the bed with me while I was being iced down for my next round of therapy or lying in the traction device. I prayed every Friday,when the insurance had to re-approve my stay for another week, that they would deny me and kick me to the curb. Of course the insurance was phenomenal and they kept giving the high-sign for me to continue. Ugh! However, through the pain and the tears, this is the moment where I realized how different I truly was, how lucky I was to be surrounded by so much love. My hip may be rare and a celebrity on the medical conference circuit, but I had more to offer the world than a copy of my bone scan. This condition wouldn't define me, it would push me through to new levels that I never felt possible.