I’m going to get a little personal today. The whole process of “getting it out there” can be so therapeutic, and I need that today.
Most of you reading this blog know that I have Crohn’s disease. (If you want to know more, CCFA.org is a great place to go.) I was diagnosed just before I turned 21, during the summer before my senior year of college, after struggling through sickness for a good 6 months. I was so sick. So, so, so sick. But somehow I managed to drag myself out of bed every day and attend all my classes. It got to the point where all I could eat was a little cereal for breakfast, as long as it was soggy enough to slide down my ulcerated throat. That was it. Day after day. I’d come home from school and collapse into bed, sleeping for 4-6 hours before getting up to change my clothes and go to the bathroom. And then I’d crawl into bed, shivering with a fever and doubled over in pain. And I’d sleep some more and get up to do it all over again.
I was so relieved to have a diagnosis. And at the same time, completely scared and overwhelmed. Along with the diagnosis came lots of tests (colonoscopy, barium study, blood work), lots and lots of medicines, lifestyle and dietary changes, and the realization that I will likely never be cured of this disease. While I knew it certainly wasn’t a death sentence, for a naïve 21-year-old it felt pretty close.
With the help of my doctor (who I loved dearly) and my parents (I love them dearly too!), I was able to get things pretty much under control. When I could actually eat again, it was like a whole new world opened up to me!! I had to take it slow and learn which foods I could tolerate and which I couldn’t.The first time I got to eat a hamburger again was heaven! And then I realized that greasy food really wasn’t a great thing for me.
I have gone through a lot in those nearly 16 years (yikes!!) since my diagnosis. Marriage, surgery to remove one foot of my small intestine, 5 kids, several moves…just to name a few. I’d say my disease has been much easier to deal with than most who have this disease. I have typically responded well to medicine, and surgery put my disease in remission for a long time. But I’ve had my struggles, and continue to have ups and downs.
As I get older, and realize more what this disease means, I find myself a little frustrated. Along with Crohn’s disease comes joint pain, fatigue, mouth sores…all sorts of weird and annoying little things. And medicine and continued tests. (I’ve had more colonoscopies than most people will ever have in their lifetime, times two. I’m only 36.) I feel yucky fairly often, and am usually pretty low on energy. My body hurts almost all the time. I try to work through it and just keep moving. Most days, I can do what I need to and hardly bat an eye. Other days, I spend most of my time lying on the floor by my kids while they play, and we eat cereal for dinner.
I look at other moms and wonder, “What would that be like? To have the energy to do all those fun things with your kids? To have your body work right and not hurt all the time? To just BE?” I know it could be worse. Really, I do. And I also wouldn’t wish this disease on anyone, even the most vile person.
I know I can’t wish for this disease to be magically cured (though I’d take it if I could), so I won’t waste my wishes on that. I have learned some valuable lessons from all of this, and I don’t think I would have learned them any other way. So maybe that’s why I have this disease.
But I do have one wish. I wish everyone could understand what a blessing it is to feel good, to be healthy. I love the days when I feel good. I love how I feel. I love what I can do. I wish every other person could know that feeling and not take it for granted. Even when they don’t work right, our bodies are such a blessing. Having them work like they should…well that’s just a little bit of heaven!
