After opening up a time capsule that I put together when I was 7 years old, I decided to write my childhood self a letter, explaining how great her life is when she is 30.
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I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?
Managing cystic fibrosis can feel overwhelming at times — but we’re here to help. Learn how to navigate life with CF.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
As a person with cystic fibrosis, I used alcohol and drugs to fit in with my peers and cope with the hardships of having a chronic disease. I still struggle with sobriety, but I have taken control of my health and my life.
Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.
Having experienced loss before, I thought I knew how to process grief. But, when I lost my cousin to suicide and my grandmother to the pandemic this past year, I reacted in unexpected ways and learned new lessons about coping with grief.
As the mother of a toddler with cystic fibrosis, I found it hard to deal with the daily grind of treatments, appointments, and insurance claims on top of all other daily responsibilities. After months of suicidal thoughts, I finally reached out for help.