It's hard not to feel guilt for all those years my partner spent taking care of me as I got more and more sick from cystic fibrosis. This Valentine's Day, I'm not going to dwell on the past. I'm going to focus on how much we love and care for each other right now.
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This year, I'm planning a big, beautiful queer wedding with my fiancée, Ali. Even though I felt conflicted about bringing Ali into a life with CF, she stayed by my side through some of the hardest challenges I've ever faced.
When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
It might seem strange but for someone with cystic fibrosis, something as simple as a mammogram can spark joy. It means that I have lived long enough to have reach this preventive care milestone, and that is something to celebrate.
With COVID-19, a year indoors -- and online -- has brought up a familiar feeling that screen time has the potential to bring us hope and laughter. On the other hand, the internet can also convince us that the sky is falling.
At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.