I think of myself as a very well rounded person and I don’t believe I have one certain attribute, trait or aspect that defines ‘me’. That is why it seemed wrong to make this blog about one topic. It does seem fitting, however, to devote some of my writings and reflections to Cystic Fibrosis (CF). It has really been prominent in my life over the past 2 years, where sometimes I feel like all I am is CF, more so than ever before. Don’t worry! I quickly reject those thoughts as I think of the many blessings that I have been granted in life, strength God has given me, and the love and warmth in my heart that I can share with others.
So, CF. Where do I start? I was lucky to have a childhood that was minimally impacted by the disease. I had friends, went to sleepovers, played outside, was a good student, outgoing, opinionated, strong and spunky. My Mom would perform manual chest PT, where I would lay in different positions as she used her hands to pound all over my back/chest for 30 minutes, twice a day, so I could spit out mucus. I really don’t remember this much – although I am sure my Mom will tell you I probably fought her tooth and nail and hated doing treatments. I do remember I would do the treatments in front of my friend Andrea, and she always wanted to help! I think in 6th grade we purchased The Vest, which was a plastic strap on vest that would blow up with air and shake the mucus out. I also did a few nebulizer aerosol treatments like albuterol and antibiotic medicine.
I was hospitalized a few times for lung infections before the age of 14, but I sort of remember them as fun experiences where I played with other children, painted pictures, played games and had really nice nurses. I am sure at the time it was probably not all fun and games, but it’s good that I don’t remember it being a bad experience.
I had to take pills whenever I ate food to help digest the fat and absorb proteins/vitamins. This was more of a nuance and became embarrassing when Mom would ask for cups of water at fast food drive-ins because “my Daughter has to take her piiiiiiilllllls”. At that time, I was thinking, “seriously Mom, just pay 10 cents for the cup and stop sharing the fact that I have an illness”. It also became annoying that I could not go outside/be in gym class on hot days for fear of heat stroke, as CF causes you to sweat incredible amounts of salt. Don’t worry, Mom was on top of that too, making sure the school had plenty of Gatorade at the nurse’s station (embarrassing!). Outside of these medical treatments, everything else was normal.
In high school, I had friends, played soccer one year, was in chorus, enrolled in honors classes, had my share of boyfriends, went to parties and dances, and was lucky to stay out of the hospital until sometime in college. I think my experience was pretty mild for a kid with CF – I was so lucky and I count my blessing everyday for this. A lot of children need to have feeding tubes, stomach/intestinal surgery, longer hospitalizations, they have antibiotic resistant bacteria in their lungs causing such damaging infection and some are not able to go outside and play.
So, that is a little history on the first part of my life. My next posting I will talk a little bit more about life as an adult and how CF has had more of an impact on my life recently. To learn more about Cystic Fibrosis, please see Cystic Fibrosis Information on the right side of page. One day soon, I will do a summary explanation of the disease.
Neat website I came across that shows what the Vest therapy looks like: http://www.singingatthetopofmylungs.com/Home.html