Author: Lauren

CF Hero

I’d like to ask you to take some time to vote for a real CF hero in the Apple Bees Heros contest. She has defied the odds and has run a half marathon all raising money for CF! She even has her own organization dedicated to “rocking CF” and raising awareness. She is truly a hero and I admire and respect her for everything she does! Her name is Emily Schaller. PLEASE CLICK HERE to vote for Emily!...

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The Past: My First Admission

I was lucky to have gone in the hospital a full 4 years after my diagnosis. I was seven years old and in the first grade. My cleanout was scheduled for the first two weeks of school. It didn’t really hit me too hard that I would be missing my first two weeks in the big school, with a full 6 hour schedule. I had to do what I had to do. I was in a double room with a little girl who loved to watch Nickelodeon. I was shy, and never said much to her. The hospital was scary. Getting my picc line placed was frightening. I didn’t know what was happening, it was a first time for everything. But I had my mom right by my side the whole time to ease my fears. I got to pick a new color to wrap my picc line in every couple days. The hospital turned out being more fun than expected. I had visitors almost every day, and I got so many cards and gifts. I had tons of stuffed animals once I went home and all sorts of things to keep me busy. I kept a journal and had everyone sign it when they came in. My favorite place was the “Activity Room” where I could go and play with other patients and we would show off our...

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The Past: The Diagnosis

This is me, at age 3, the day I went into Children’s Hospital Boston to get diagnosed with CF. I had an awful cough as a kid, and I was tiny for my age. So we went to get tested for CF. My first memory as a kid is the sweat test. I remember it feeling like my arm was being electrocuted and crying the whole time. I had no idea what this was for. I had no idea what cystic fibrosis was! I just thought I got to take my dolls on an adventure into boston, and I got to see the big Whale mural that we drove by on the highway. But the sweat test said I had CF. And that was the day our family’s life changed forever. We were already dealing with the fact that my brother had brought home lice from school, and of course the whole family got it when we had our weekly TGIF tv night watching our favorite ABC sitcoms on mom’s bed. It was around christmas, and my mom said she wouldn’t come to christmas at my grandmother’s house, cause she didn’t want to spread the lice, and she was so shocked by the recent news. But our family told her we needed them at this time, they were our family. So we came, all my cousins had their hair...

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The Past: “Treatment Tapping Time!”

I was thinking today about what it was like for me in the past compared to now. So I decided to start a series of posts that reminisce to my younger days with CF. I remember my smiling dad saying cheerily every day “TREATMENT TAPPING TIME” Tapping of course was our name for chest PT, and somehow he thought both the alliteration and saying it like it was snack time or play time made it seem better than what it was. Sometimes we’d play games while I did my nebulizer. And we would watch whatever I wanted while he did my Chest PT. I had a mask instead of the mouthpiece because I hated the taste of everything. And my nebulizer was about twice the size of the one I have now. Of course, I tried to avoid it every day. I would cry and my mom would pretend to call the doctor at which point I would shove the mask on my face with a pout. I complained that the Tobi tasted bad. I complained that the tapping hurt. I complained that I just wanted to sleep. To get me to be compliant we made a chart. Every time I did my vest 10 times, I got to go to the local candy store, Skinners, and get whatever I wanted. Sometimes I got $10 worth of candy which...

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Running with Meka

Lately I have been taking my lab dog Meka running with me and its so fun! We start out in the backyard where we do a warmup lap and then I stretch while she plays with her ball and sprints around. We set off walking down my side street to warm up then we start to jog at the end. I don’t even need to bring my headphones with me cause she keeps me entertained. Its so great running outside in the fresh air with her. She trots along panting right along with me and keeps up the full 2 miles that we run together. I’ve even got her to ignore other dogs walking past us because she is so engaged in our workout. Once we get home I stretch and cool down. Today, we went for a swim in our pool to cool down from the hot sun. Meka even came along! Next time she comes swimming with me I’ll post a video, its HILARIOUS. She jumps sooooo high then pretty much bellyflops into the water and fetches her ball! Right now she’s grumpy though because she has to dry off before she can come cuddle with me ! Time to go do my nebs now. My lungs are craving hypertonic saline!!!!!!...

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