Sunday, May 7, 2017

CF Awareness Month Day 7 - School

Since I didn't have to start dealing with hospital admissions until I was in my mid-twenties, CF and school were not a complicated mix for most of my life.  Growing up, I occasionally had to miss school because of routine doctor appointments, and I think my parents were a little more lenient with allowing me to stay home from school when I wasn't feeling well or was coughing a lot, but it was never anything that made me feel different from my other classmates.

In elementary school, I had to leave my enzymes with the school nurse and go visit her during lunch every day to get my pills.  Thankfully it was a small school, so the nurse knew me well and it was never a big deal to go get my pills.  In fact, it made me feel kind of special because it was something I got to do that the other kids didn't, haha.  I actually remember that in elementary school, I had a list of three things in my head that made me feel special and unique from the other kids in my class (in a good way!  I was proud of these differences!):  1) I was an only child; 2) I had no middle name; and 3) I took enzymes.  This is probably a good testament to how my parents raised me to deal with and understand CF.  :)

By the end of elementary school, I just carried my enzymes with me in my purse or backpack, and this continued through high school.  I'll be honest, I wasn't always great about remembering to take them, but my weight did fine so I must have remembered often enough.  The enzyme forgetfulness did often lead to tummy issues while I was at school, though, which could be embarrassing (and painful!).  Slowly, I learned my lesson, though.

My lungs were good enough to not need daily breathing treatments until the end of high school, so breathing treatments, etc., were never a big issue at school or when I'd travel on group trips, etc.

College was a learning curve on taking care of my own health.  On top of having complete freedom/responsibility for the first time in my life, it was unfortunately also the time my lungs started getting worse and needing more attention (aka: I needed to do my breathing treatments and Vest every day).  I did ok keeping up with my oral medications, but I was not great at remembering to take my vitamins.  I also almost never missed an albuterol treatment, but I rarely did my hypersal or pulmozyme, and almost NEVER did my Vest.  My roommate and I got along fine, but we weren't especially close, and while she knew I did breathing treatments every day, I was embarrassed to do the Vest around her because it was so loud and weird.  I wish I could have been braver and more responsible back then, because my lungs definitely took a downward turn toward the end of college.

My last experience with CF and school was when I returned to law school in my mid-twenties.  During law school I had to be admitted to the hospital several times (4 admissions, and 2 at-home-only IV courses, and 3 sinus surgeries).  This was challenging because we were only allowed to miss a certain number of days each semester or we wouldn't get credit for the class.  Really, this just meant I couldn't let myself play hooky very often because I knew I might need those absences for a real reason later. :)  And, on one or two occasions, I actually left my hospital room to "go for a walk", which included a driver waiting downstairs to help me make a quick getaway to attend my class right down the road for an hour or so. 😆  I didn't tell all my professors about my CF, even when I had to be admitted during the school year, but twice I had to:  once when I was admitted right before final exams, and again when I needed an extension on a paper due to being in the hospital.  Everyone was very polite and accommodating both times I needed a break.

Learning to manage school and CF as a young child is an important part of learning to grow socially while also learning how to deal with CF's requirements and complications.  College is an important time to learn autonomy, both as a person and as your own caregiver.  This is the time you have to learn to take of yourself FOR YOURSELF, not for your parents or whoever has been driving you to do treatments up until that point.  And further education and CF is good practice for learning how to balance CF needs with the demands of the workforce you will someday enter. 

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