Tuesday, May 6, 2014

Diagnosis and Childhood

I'm way behind, because it's day 6 of Cystic Fibrosis Awareness Month, and I have only posted once. So, I'm going to play catch up just a little bit and post for day 2 and 3. From the moment I could crawl, I was always active. I had one of those bouncy seats that hangs in doorways, and according to my parents, I was constantly jumping in it. Due to all of the exercise early on, my lungs really did not show the major symptoms of cystic fibrosis. My big issues showed up in the form of digestive issues due to my pancreas malfunctioning thanks to CF. I was born before it became the norm to screen newborns for the disease, so I slipped through the cracks when it came to receiving a diagnosis. My mom argued with multiple pediatricians about my health. She went through two that both told her she was just overly concerned and that I was just a sickly child. Finally, she got the third pediatrician to really put some thought into what was going on with me. He went out on a limb and decided to test me for cystic fibrosis even though he was confident that was not what I had. So, at the age of 6 years old, I was diagnosed with cystic fibrosis after going through a sweat test which is the procedure that is used to determine if a patient has CF.

I mentioned that I had digestive issues as a child, and I just remember excruciating pain dealing with those issues. When I look back at pictures of me as a kid before my diagnosis, I looked malnourished. I had the thin limbs with the distended belly due to my body being unable to digest the food that I was eating. I am so thankful for that pediatrician that actually listened to my mom and tested for cystic fibrosis.

Once I received my diagnosis, life changed pretty dramatically. We started going to a specialist for my disease, and I had to begin taking new medications and doing breathing treatments. I continued staying active, and thankfully, my parents chose not to put me in a bubble because of CF. I was always outside playing with the neighborhood kids, and it was like pulling teeth trying to get me to come inside at night. I struggled with the fact that I had to go inside earlier than my friends, because I had to fit in a breathing treatment before bed.

In elementary school, I was not embarrassed by cystic fibrosis, because it really didn't matter what people thought about me. I didn't let it effect what I was doing or who I was friends with. The biggest problem I had with it was that I had to go to the office everyday to get my digestive enzymes before lunch. That was always an inconvenience to me.

My childhood was great minus the hassles that cystic fibrosis presented. My parents allowed me to live my life as close to "normal" as possible. My family hit the ground running after I received my diagnosis. They knew they had to do everything in their power to fight this disease. We began raising money and participating in Great Strides that year. We have been doing the same thing every year since then. This year will be my 20th year with Great Strides! I plan on doing everything I can to fight the disease for not only me, but for every person who is struggling with it.

To make a contribution to the Cystic Fibrosis Foundation, just click on the picture below. :)

1 comment:

  1. That's why I love you and look up to u! You're such a positive person:)