My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.
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After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
Despite my cystic fibrosis, my relationship with my daughter continues to grow stronger each time we are together. She doesn't care about what I can or can't do physically. She just loves me unconditionally.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
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.