As a small child the only thing I knew about surgery was that I got a cool present after. A My Little Pony coloring book to be exact. And when i got back to school I would have an awesome new cast for all of my friends to sign and draw pictures on. My mother gave me lots of extra attention that I didn’t normally get and I thought that was just great. I could ask for just about anything I wanted and she would rush to my side. What 5 year old could ask for any better?
I never perceived my predicament as an illness or a problem. No, I was just special. Mom says that almost nobody else is like me. I have a rare disease…a novel, obtuse thing that provides me with all of the attention and presents I could ask for.
Now, six surgeries and decades later the novelty has evolved into a giant pain in my ass. Or leg rather. I have a rare benign bone disorder called Osteofibrous Dysplasia. Up until I was about 18 it constantly grew back resulting in a bowed tibia and a terribly weakened bone. Surgery after surgery was done to try to remove the affected area and it always came back.
Doctors now know much more about the disease than when I was five and strongly recommend avoiding surgery if possible. Would that knowledge have stopped the countless surgeries all those years? Maybe. Am I bitter? I try not to be. It’s difficult to say what the doctors should or should not have done. After all, the tumor spans over 2/3 of my tibia and has resulted in fractures.
Nonetheless, I now need a rod in my tibia to stop the bowing and strengthen my tibia. While I am very glad that much of my daily pain will go away as a result (not to mention the tumor is pretty much gone), I am freaked out! You’d think I would be used to surgery by now, it turns out I am not! Not only do I have the procedure itself to cope with, I will have a six week recovery time. Oh and did I mention I have a three year old daughter?
I have a wonderful husband and family as a support system but I am still worried. I am going to have no control of my life! Well, what books I need to read but that’s about it. Searching online for others stories and how to cope with a rare disorder has been fruitless. I also wanted to know how other parents deal with recovery and still manage a toddler! So I have decided to start a sort of surgery journal. An outlet for my experiences.
My surgery is September 13 and I’m it for the long haul!