The Beginning of the Journey

Let me bring you back to about this time of January 2009. In January of 2009 I was getting along relatively well with my family and was awaiting the birth of my first niece. Happily enjoying the new laptop that I had gotten for Christmas. I mention the laptop because my using it was one of the contributing factors to a medical issue that was the event forced me to trust my gut feelings more often.

As an individual with a neural tube defect I had been told since I was a young child that I would need to regularly change positions and that I should also get in the habit of checking my body for sores. I spent the weeks after Christmas sitting on my bed playing with my laptop and not changing my position nearly as much as I should have.

In mid January I realized that although I wasn't in pain, due to decreased sensation, I had developed a pressure sore. I immediately went to the doctor and was told that not only was I going to need skilled nursing care at my home that really regardless of what the doctors or nurses did that it wouldn't heal unless I took the responsibility to stay off the wound as much as possible. Now is probably a good time to mention that I am wheelchair bound and that the wound was near my coccyx. Thus, I had to switch from being relatively active to basically being stuck in a bed forced to lay on my sides and stomach.

It took about a month for my wound to completely heal. That month felt incredibly long. Being stuck at home in bed left me feeling isolated and depression kept rearing it's ugly head. I tried to stay as positive as possible and was encouraged by my nurses that the wound was closing nicely and that it would get better if I just held up my end of the bargain and stayed off of it. I did hold up my end of the deal and exactly two days before my niece was born I was given medical clearance to begin living my life again.

I was thrilled with that news especially once I got the phone call to go to the hospital to meet my new niece. As I was holding her for the first time I made a vow to myself to do all that I could to prevent myself from having to experience anything like that again. Sadly, that was not in the cards for me.