Reflections : My Life with CF

About a year and a half ago, I was diagnosed with Cystic Fibrosis. After having some time to reflect on my experiences throughout this past year or so, I’ve realized how much beauty there really is around us. I’ve realized that life is, indeed, short. I’ve also learned that not many people know about CF, which is understandable considering there are only roughly 30,000 cases of it in the U.S. All that said, I would like to share my story with you in hopes that it may bring a little light to your day and positively impact your future interactions. This post is a compilation of a few different things I’ve written, so I apologize if it’s a little spacy.

My CF is a little different than the common diagnosis. Currently, my CF does not affect my lungs; they are healthy. Those of you who know about the disease are probably thinking, “But if you have CF, why are your lungs healthy?” Cystic Fibrosis is a genetic disorder caused by a chromosome deletion and normally does affect the lungs. Usually mucus clogs up the lungs so that it is very difficult to breathe; often people with the disease make it to their teens or twenties. It is normally diagnosed when you are an infant. They didn’t start testing every child born for CF until the year 2000, so since I was born in 1995, I was not tested.

Ever since I can remember, I have had stomach aches. I think my parents probably thought I was just complaining a lot when I was little because my tummy just always seemed to hurt. The last few years especially, I would have just terrible stomach aches. It got to the point in the spring of my senior year where I couldn’t eat because every time I did, I got a stomach ache. I lost quite a bit of weight, so we went to see a doctor. He was able to piece together all of the symptoms and prior surgeries I’d had and came up with a probable diagnosis. After a good amount of testing, his assumptions were confirmed: I had CF.

So, my CF affects my pancreas. My pancreas has gone through what they call Disappearing Pancreas Effect, so it has mostly been replaced by fat and mucus. The pancreas is responsible for producing insulin and digestive enzymes for your stomach to help it digest food. I still have a bit of functioning pancreas left; it still produces enough insulin to keep me from becoming diabetic, but it is not producing enough enzymes to help me digest food: hence, the stomach aches. Also, the main duct in the pancreas, the Pancreatic Duct, is dilated 3x the size it should be, due to a clog in the lower part of the duct. So I have chronic pancreatitis, which means my pancreas is almost always inflamed. Currently, in some surprise to my doctors, my lungs are totally healthy. I am so grateful; not many people with CF get to say that.

So that’s the gist of how Cystic Fibrosis affects my body.  But the main part of this post is not about silly pancreases or “woe is me,” because that doesn’t help anything. None of you can probably magically change my DNA (if you can, I’d love to speak to you). 🙂

   A favorite quote of mine comes from a book written by a Holocaust survivor.  It said, “You get to choose the color of your own sky every day.” My dad said this to me a few years ago, but it wasn’t until a chilly night in April when he said it again that it stuck with me. He was the one to tell me about my diagnosis that night. I can not imagine how difficult that must have been for him. My father is so important to me; he has been there for every doctor’s appointment, every tear, every frustrating situation at hospitals and each rejoicing hug. I am so blessed he’s my dad.

There are so many other worse things than my CF: disease, war, hunger, cancer, abuse- just horrible, horrible things. How lucky am I? I taught church school at my home church for a few years. One of the projects was called “Perspective Glasses.” We made these little cardboard glasses and we had the students think of a situation recently that made them mad or sad and then told them to put on the glasses. What the glasses did was they made the students look at the situation from a different perspective. Was the waitress kind of rude and snippety with you at the restaurant? Put on the glasses. Maybe she was having a bad day, or maybe someone in her family is sick and she is caught up in worry. Did the line for coffee take forever this morning? At least you have clean water to drink and have money to buy things for yourself, like coffee.

It’s all about perspective. We can really have an impact on the people around us. Sometimes I think we forget that. We get so caught up in our own situations and lives that we forget to take a step back and look at the world around us and the impact we have on it. Life is messy. I don’t think it was meant to be pristine, clean and crisp- because we don’t learn anything that way. I like to paint. When I’m done painting, I often look down and see my hands and clothes are full of paint- but when I look up at the easel, something beautiful is there. I’m sure many of you have felt this before. Take hiking, for example. You get dirty and sweaty. It’s hot. But when you reach the summit, you see an amazing view below– something full of life and something breathtaking.

A change in perspective requires hope. Hope in people; hope that the situation will change. For me, that hope comes from God. Sometimes when I’m sad, I question everything, and I ask, “Well why am I here then? If I’m causing pain for my family and if I’m in pain, then why bother?” I don’t claim to know the answer to any of those questions, but what I’ve come up with, for me, thus far is that I must have some kind of purpose. If I’m not gone yet, He must still need me for something.  I don’t know what, but I hope it’s something cool.

I have a life ahead of me filled with surgeries, doctor’s appointments, tests; but I also have some life ahead of me. I don’t know how much, or how little, but to me that isn’t important. No one knows when they’re gonna go- death is inevitable.  It’s going to happen. But what is important is what I choose to do with that life; what I do to help it, impact it, and maybe leave it just a little better than I found it.

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.”  Abe Lincoln

We don’t have to be afraid of things we do not know or understand. Thanks for taking the time to understand a little more. Have a lovely weekend, everyone!



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