Imagine the hero of a black and white B movie desperately overacting his line as he realizes his many attempts to save the world haven’t worked yet and he is tiring way too fast. “Must conserve energy.” Finally using his brains to figure out the best way to defeat alien invasion, he summons his last bit of strength to save the world!
Welcome to the life of many Crohn’s Disease sufferers. We often do feel trapped in this B movie drama every day, trying to conserve what little energy we have for the important things in life. I’ve had to develop a gravy principle: Get two things done each day and everything else is gravy – a bonus. I have to pace my speaking/presentation commitments enough apart so I have time to recover between them. Truly life is lived, one step at a time.
While I’ve suffered from Crohn’s Disease for more than 25 years, I’ve only known what I was battling since January. Yeah, it really stinks. Sometimes I wish I could jump back in time and knock on the surgeons’ heads who opened me up in an exploratory surgery, took out 18 inches of my colon and left me a parting gift of a lovely scar. “Hey guys! Did you ever think that damaged colon might be due to Crohn’s Disease? Maybe you should follow up on this. Order a colonoscopy, some stool samples and some bloodwork.” Alas, no one was there to tell them, so they didn’t do it.
Maybe that’s why I’m where I’m at now, to make sure it doesn’t happen to anyone else. There are many out there like me, misdiagnosed or undiagnosed for years, struggling against something they couldn’t name and didn’t know how to fight, just trying to figure it out on their own. So as this disease sucks my energy, I live life only one step at a time. I choose the most important things to do each day and save my energy for those.
I’ve made a lot of new friends and connections since my diagnosis. I now keep up with “Girls with Guts” and a Crohn’s Disease Online facebook page. It helps to see what others are struggling with and know that I’m not alone. It also helps keep us from reinventing the wheel. Hey, if something works – share it!
So since I’m taking just one step at a time, I’m going to make them count. This October, I’ll make them count at the Take Steps for Crohn’s being held in Tyler, Texas. I’m looking for a sponsor for a team, or else I’ll just sign up as an individual walker. Either way, I’m going to help raise awareness about this lifelong disease and how many times we look “normal” on the outside, but we are suffering greatly. Maybe I can help just one more 15-year-old girl avoid 25 years of not knowing the enemy. Everyone deserves to know what they are fighting against!