When I was a kid, I used to get SO INCREDIBLY ANGRY at my parents when they asked me if I had taken my pills, when they told me it was time for my treatments, when they threatened to call the doctor if I didn’t put my neb in my mouth, and when they told me to finish my food. I hated those words, “It’s treatment time!” or “Time to take your pills.” I hated those “times” when I had to take time out of my ordinary life, when I was tired, when I was sick, when my favorite show was on, when my friend was sleeping over, when I just wanted to eat my ice cream. I always thought “why don’t YOU try doing this every day,” “can’t i just skip just this once?”, “why me?” It didn’t make sense. It wasn’t fair. And to any child, those are normal thoughts. But they didn’t budge, they were persistent. And not only that, in the background they were making sure I had refills of all my pills, cleaning up my CF supplies messes (they still do), and worrying probably more than I realized.
Now I know that they were doing all of those because they love me. Their love is something I’ve appreciated to this very day and I will appreciate for every day beyond that. Sure it was annoying, and sure sometimes I felt they should have just left me alone, but it was for the best. I know that if they weren’t nagging me I probably would have taken the option to play with my barbie dolls rather than do my vest. And just because I’m older and more careful of how I care for myself, I still need that reminder once and a while.
For example, the other day, I had been busy with homework all day, so I was exhausted and ready to go to bed early. I knew I had to do my third dose of Cayston/Aztreonam in the E-flow before bed. Even though it takes only 3 minutes, I knew it would mean I’d have to wait to brush my teeth, get it set up and then take extra time to clean it. In my over-tired mind, doing Cayston was the end of the world. Though I’m usually very good about just getting it done, that night I brushed it off like it was fine to skip it, and Kyle, my boyfriend, was there. He was very adamant about telling me I had to do my aztreonam. He wouldn’t leave until it was done and convinced me that taking time to do it wasn’t going to be that big of a deal. He even jokingly pretended my doctor was calling him saying I have to do it for the study I’m in! He made me laugh and it didn’t seem like such a big deal any more.
I’m so grateful for all the people in my life who check up on me. I know I can trust myself to do my best for my own care, but sometimes I just need that extra shove. So this is a thank you to the people who love me. First and foremost, my parents, who have bared the brunt of my care, who have been there every time I’m in the hospital, who check to make sure I’m doing everything I should, who comfort me when I’m exhausted, who support me in my efforts to do better, and who have been there for me and who I know will always be there every step of the way; my brother’s for asking how I’m feeling, for learning more about my treatments, for supporting me; our family and family friends who donate and support everything our family does; my friends who ask if I took my pills, who see me as a friend rather than a sick girl, and who explain my disease to new friends; and Kyle for always making sure I’m doing what I can to be healthy, for celebrating my runs with me, and for loving me (even when I’m tired and grumpy.) I am so lucky to have such people in my life!
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