Part One of Unique Me

     As I shared in the opening blog, I was created a bit differently than everyone else, in a way that showed me the world from a different perspective. For those that know me well, you are quite aware of the "special hip" and the journey that it took me on in my younger years. Some of this may be boring reading to you, but you may find some interesting tidbits. For others, this "specialness" played a significant role in my life and still does today. I'll admit that some of these pieces are difficult to recall and this blog would be multiple pages if I did it all at once, so I will break it up a bit. So here's the scoop and how this crazy journey began:

     In February 1995, just shy of my twelfth birthday, I finished my tap class on a Thursday evening, but this time something was much different. I had intense pain in my right leg that didn't seem to dissipate with rest, ice or any other typical relieving agent. I attempted my next dance class and by the time it was over, I had to be assisted to the vehicle because my leg really did not want to cooperate. As a nearly eight-year dancer, I was no stranger to pulled or strained muscles, but the pain I was feeling was from from ordinary. Little did I know that this night and this pain would help to carve the path for the remainder of my life.

     I limped around on Friday morning and my family decided that a trip to the doctor was necessary to make sure I hadn't caused any damage. Xrays appeared fine, my range of motion was limited (but nothing more than what you would see with a traditional sprain) and everything seemed to be in working order. I was told to stay off of it for the weekend, take stronger anti-inflammatory meds and take at least a week off from dance. Ugh...that was the worst possible thing he could have told me, take a week off from dance, we'll see about that doctor!! Well the weekend of rest turned into the weekend of terror...the pain intensified, walking short distances proved to be next to impossible, and I knew that this was WAY more than a sprain. Monday ended up being a blur...my family doctor started running typical range of motion tests and I had lost several degrees of rotation in a 48 hour period, enough to warrant a special appointment with the orthopedic surgeon. They rushed me for more xrays, took multiple vials of my blood and sat me in a cold and sterile room to wait for the doctor. He had me walk down hallways, measured the lengths of my legs, moved me around like I should be made of rubber. All I could see was him shrugging his shoulders and saying that I would need a full-body bone scan. He asked my Mom to join him in the hallway to set-up my appointment. I didn't learn until later (much later) that when they stepped into the hallway, my Mom was informed that they suspected a rare form of bone cancer and that my prognosis would be grim, most only survive six months. My mother is ONE STRONG WOMAN, because she was nothing but positivity when she came back in the room for the doctor to explain the procedure. I didn't have a clue that they thought my life was hanging in the balance.

     A few days later, I show up with most of my family in tow for a full-body nuclear bone scan. That's right, for at least a day, I was glowing! I didn't know that my Mom had arranged with a doctor at our clinic to have my tests read immediately, due to the fear of what they may tell us. Originally they said it could take up to two weeks to hear anything, we heard in less than two hours. When the nurse came in to tell us that the doctor would be there shortly, she happily announced that "it isn't cancer". My Mom and Grandma burst into tears and I am just sitting there, stunned. What do you mean "it isn't cancer, I thought they were looking for broken bones"? Then they shared what the orthopedic surgeon had told them and my heart sunk into my stomach, even though I was elated that I didn't have a six month window to live my life. Basically, the test showed nothing and we were back at square one with a leg throbbing with mysterious pain. The next few weeks were filled with doctor appointments, the evening of my twelfth birthday spent in the Ball Hospital ER and being tagged as some sort of medical mystery. After numerous doctors, numerous tests (including a MRI) and numerous theories, it was decided that I would be sent to specialists at Riley Hospital in Indianapolis.

     Riley was nicely decorated as we made our way to "Clinic C", which would end up being my home away from home. Multiple doctors came in to check me out, look at my xrays and talk to me and my family...I felt like a celebrity. I was slightly ticked-off when they decided that I needed to spend the night in order to allow multiple tests to be ran and to enjoy a little bit of physical therapy. Once again, the tests and xrays came back clear and everyone was stunned. One month later, I returned to the "C" and then had the opportunity to meet with Dr. Thomas Kling, an orthopedic surgeon that looked like a skinny version of Santa Claus. My new xrays and a new MRI finally had an answer to reveal (6 months later)...the cartilage had disappeared in my right hip joint and only left a thin film that had kept it rubbing bone on bone. My previous xrays had "phantom cartilage", which was basically fluid that mimicked the look of a normal joint. I was officially diagnosed with Idiopathic Juvenile Chondrolysis.

     Idiopathic Juvenile Chondrolysis...say that three times fast. It is a rare joint disorder with no known cause that typically effects African-American females in their twenties. I was only the second case seen by Dr. Kling, the first for many others, and I happened to be the rarest. My crutches now became permanent fixtures (I was told to become non-weight baring immediately), I had to sleep in a special traction contraption and my bedroom had to be moved to the dining room of our home because I was no longer able to maneuver the stairs to my 2nd floor bedroom. This tap-dancing, tennis playing, pre-teen was now a research study and medical lab rat. Just when I thought that this was the worst of it, the saga continued...