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CF in the Age of Big Hair & Leg Warmers

Posted Jun 15 2010 12:00am
Confessions of a Cyster will include the good, the bad and the ugly. Just an FYI, I am generally a positive person, however, I have no problem admitting when things just downright suck. If you only want the bright and shiny side of CF, this blog may not be for you... However, I know that I am much more fortunate with my health than many others with this illness. If you only want to hear about the challenges from someone who is currently struggling, this blog may not be for you either. I will be sharing my positive insight and successes in future posts. This is just one girls story...

1981 ~ 1989 (Elementary School Days)

Sick little, Stacey. Somebody should have given me a tissue instead of a cheap plastic comb... Seriously, that picture is all wrong! A little better a year later in 1st grade. Except for the clothing choice, of course.

After reflecting, I think I learned 4 major lessons during these school years:

Lesson #1: Chronic Illness Can Sometimes Become Routine
After a few years of becoming intimate with CF, everything became more routine. A pain in the ass...yes, but still routine. An hour of nebulizer treatments then clapping, followed by a huge handful of pills, in the morning before heading to school. Then repeating it all again in the evening. Oh, and I was not one of those children who sucked it up and accepted this as my reality. I'm not sure that there was a single day that went by that I did not BEG my parents to skip my treatments. I could think of a million things I would rather be doing. It was, however, part of my routine.

Lesson #2: It's Difficult to Dream About the Future When You're Told You Won't Have One
These were my healthiest years. I had lung infections, but none lead to hospitalizations. Besides all of the medications I was taking and treatments I was doing, in public I was a normal kid who seemed to always have a cold. Yet, even at this young age, I think I always lived with "death on my shoulder". I took a lot of interest any time I heard of a child dying. I wanted to see how people reacted, what the details of the death were, what the process was like... I was curious about what was to come for me. I remember how the question, "What do you want to be when you grow up?" annoyed me. I always had an answer, but I never thought past that rehearsed response. I ALWAYS have dreamed about my future only as far in advance as the current life expectancy. When I was little, I never thought of myself as a teenager. When I was a teen, I never imagined being a twenty-something. Even today, it's hard for me to see past age 37. More on that in future posts... I think this may be a form of self-preservation. If I don't dream about it, I won't be quite as disappointed if it doesn't happen. Makes sense, right?

Lesson #3: Being the Healthier Sibling o f a Sick Child Can Pretty Much Suck
One thing that still makes me sad about this period of time is all of the time my stupid disease stole from my brothers life. He had the pleasure of being the healthier sibling. He had some health issues, but did not require daily treatments. This equated to him being unintentionally ignored much of the time. Everybody always said how great Jason was at entertaining himself. Honestly, I don't think he had a choice. There was only so much attention to go around. My parents did nothing wrong...I just took a lot of time and attention to care for... Honestly, it must have really sucked for him :-(

Lesson #4: Real Friends Will Do ANYTHING For You!
One thing that makes me look back an smile is the love of a few close friends, especially Lisa and Jenny A. They both took such a huge interest in learning my treatments so I could go on the 6th grade camping trip and 8th grade Washington DC trip with my class. Such a HUGE responsibility for these little girls to take on. Lisa always had my back, too. If anyone ever made a comment about my disease, she would put them in their place. Now that I have lived 34 years, I know that friendships like that are very hard to come by. I'm happy Lisa is still part of my life today and that I have reconnected with Jenny A. via Facebook ;-)

Stayed tuned for the next Chapter...CF in the High School years...UGH! NOBODY hated high school quite like I hated high school!!!

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