Friday, January 28, 2011

The Man of my Dreams

Now, I am going to start skipping around in my story, because I don't want to talk only about Cystic Fibrosis. As I said in my last post, I view CF as only a part of who I am, but there is so much more to me. That all goes into living with CF, and the other stuff is what gets me through the hard and scary times.

As I have pointed out in my about me section, I am engaged to my best friend, Eldon English. And what more perfect time to start talking about the man I'm going to marry than exactly 4 months before the wedding? At this point in my life, he is my favorite topic to discuss, but how do I put into words what Eldon means to me?
I met Eldon in 5th grade. We were in the same class, and he was my best friend's boyfriend. We went to different middle schools and high schools. Our high schools were actually rivals! We had not talked since 5th grade when I found him on Myspace. We began talking and just getting to know each other, and after awhile, we became really close friends. I came to consider him as one of my best friends. It was over a year later when we decided to to start dating.We had a long distance relationship for 3 years, and our relationship grew to be one of love, trust, and communication. After almost 4 years, we are getting ready to get married!
That sounds like a pretty typical love story, but there is so much more to Eldon's commitment to me. What does it mean to marry someone with a terminal illness? Eldon has chosen to marry me knowing what our future may have in store. As I have mentioned before, the median life span of people who have CF is around 40. While I try not to think about it, that is only 17 years away... not long at all. There is also the fear of a lung transplant hanging over our heads. It is not really a question of if I will ever need one but when which was brought to a reality last August (more on that later). Then comes the worry that we will not be able to have any children because of the toll that takes on the mother's body and whether we are comfortable having children knowing there is a chance they won't have their mother for as long as we would like. Most people would take all of this information in and turn to run away as fast as they could. But Eldon didn't.
Eldon has chosen to stay, and he is my inspiration to keep fighting. I want to be with him as long as I can, and the only way to do that is to do everything in my power to stay healthy. I cannot wait to get married, because I want to spend the rest of my life with Eldon knowing that he feels the same way. We take everything one day at a time, and he keeps me strong. Eldon Thomas English is the best man that I know, and I am so excited to have the chance to be his wife!

Tuesday, January 25, 2011

Starting at the Beginning

In most cases, people who have Cystic Fibrosis are diagnosed at birth or within the first two years. I am the exception to the rule. I was not diagnosed until I was six years old. So, for the first six years of my life, I had stomach issue after stomach issue. I won't share all of the details with you, but I would eat all of the time. It would just go straight through me. I looked like a child who was malnourished with a protruding belly and thin, tiny appendages. My mom took me to three different pediatricians before they figured out what was wrong. So what threw them? I had virtually no lung issues. Why? They said that it was because of how active I was. I was always going... running, playing, jumping. While it made my lungs healthier, it extended the time it took to get a proper diagnosis. Finally, my doctor performed a sweat test on me, and determined that I had Cystic Fibrosis.

From that point, I quickly began accumulating different treatments to fill my day. It was hard, because my breathing treatments took at least twenty minutes each, and I had to do them twice a day. That is a lot of time for someone who is wanting to be outside playing with her neighborhood friends. There are many times that I remember crying when my parents made me come in to do a treatment in the middle of a game of hide-and-seek or kickball. I did it all anyways, and for the most part, I stayed relatively healthy. There were periodic hospital stays for pneumonia or bronchitis, and I dealt with it. My CF doctors believed in doing bronchoscopies (when they go in and flush out the lungs) regularly as a preventative measure, so I began having one done almost every year. Again, I dealt with it and kept going.

I really began resenting the whole thing when I reached high school because I had things that I found more rewarding and important. I was a cheerleader, and I wanted to spend my time doing that, working out, and learning how to tumble. But there were always breathing treatments to do. Through all of that, I still stayed healthy when compared to other people with CF at my age. It wasn't until my senior year that I started skipping treatments here and there, and my health started to decline a little. Once I got to college, it was even worse... but more on that later.

There is so much more that I could write on this part, but I don't want to go on forever. So that is it for now, and I will add to it as I go on. I have to admit that it is really nice to write all of this out, because there are so many things that I keep hidden. I do that because when I was in high school, I decided that while CF is a huge part of my life, it would not define who I was. Most of the people I knew in high school still probably have no idea that I have Cystic Fibrosis unless they are reading all of this now. I just kept it all to myself, so this is a pretty big deal.

Monday, January 24, 2011

A Little Bit About Cystic Fibrosis

I'd like to start off by explaining what Cystic Fibrosis (CF) is. CF is an inherited, life-threatening disease. Inherited means that it is passed down through genes. The defective gene is recessive which means that both parents have to have carry the gene in order for the child to actually have Cystic Fibrosis. That means that my mom and my dad are carriers for the disease even though neither of them actually have it. The defective gene causes mucus that is thin and slick in a normal person's body to be thick and sticky in a CF patient's body. The mucus clogs up the lungs increasing the risk for lung infections. It also blocks the pancreas which prevents the proper digestion of food. There is not a true life expectancy for this disease because there are so many varying factors that contribute, but on average, people with CF are living into their 30's and 40's. That being said, there are those who live much longer than that... my goal is to be one of those.

There are many fundraisers that take place throughout the country to help raise money to find new treatments and one day, maybe even a cure. I will be walking in the Great Strides Walk for Cystic Fibrosis on May 14th this year in Knoxville, Tennessee at Victor Ashe Park. I have set a goal for myself to raise $1000. If you would like to donate anything to my cause, I would greatly appreciate it! There is no amount that is too small! Every little bit helps, and it all adds up! All you have to do is click here, and it will take you to my donation page. Thank you so much for your help!

Sunday, January 23, 2011

We'll see how this goes...

My name is Kayla Rose. I am 23 years old, and I have Cystic Fibrosis. God has been stirring in my heart to share my story, and I think this might be the best way to do that. I want to share my struggles, fears, and blessings so that they might help someone else going through something he/she might feel is unbearable. I believe that God does not give us more than we can handle, and we can use our difficulties to reach others and offer inspiration. So that is my goal for this blog. We'll see how this goes...