Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
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Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
I always say that when life gives you lemons … turn around and write some Japanese-style poetry. I hope you enjoy these haikus I have written about life with cystic fibrosis.
My feisty, athletic nature has gotten me through two double-lung transplants. Although my active lifestyle is different than before, I have embraced brand-new competitive pursuits that have helped me develop the mental fortitude to overcome medical adversity.
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.