Listening to my body -- and hearing what it has to say -- is not always what I want to do, but what I need to do.
Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
Having cystic fibrosis can be a full-time job -- especially when you already have one. Here are some of my tips for managing work, life and a busy schedule with CF.
After turning 60, I decided to mark the milestone by creating a “living list,” 60 things I could do to raise awareness and money for cystic fibrosis care.
As a teacher with cystic fibrosis, I find it no surprise that heading back to school can be a shock to my system. But over the years, I've learned that if I can remember three main things, I can stay healthy through the transition back to school.
At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
Not only am I a member of the CF community, but I’m also a member of the clinical community — an oncology nurse — and I have had to endure hard lessons to learn to advocate for myself and get the medical care I need.
My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.