Gunnar has asked me to write a blog with my feeding tube recipes for a few years now, but it never felt right to me. After all, I’m not a dietician or nutritionist, so who am I to suggest what people pour into their gullet? But this week is feeding tube awareness week, and as...
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This written interview was completed by Catya Kurban, a young woman living with cystic fibrosis who recently completed her masters in science (Child Life and Family Centered Care). She is a patient-facing healthcare worker. 1) why did you get the vaccine? I recently graduated with my masters in science studying Child Life and Family Centered...
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This post was written by Megan DiBenedetto. She is 28 with cystic fibrosis from the New York City area and is a practicing nurse at NYU Langone Health. I’m 28 years old with cystic fibrosis and I’m a bone marrow transplant nurse for NYU Langone Health, a New York City area hospital system. I received...
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Darcy is back on the blog! Fertility treatments are one of those elective procedures that have been canceled because of the pandemic. It makes sense, of course, but it’s one of those crazy domino effects of the virus. It’s weird to think that there will be different children born at different times because COVID19. I’m...
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It has been a difficult few months for the Canadian cystic fibrosis community. While our country is widely known for being a world leader when it comes to publicly funded cystic fibrosis care and healthcare in general, the same cannot be said for its position on pharmacare. Many Americans will be surprised to learn that...
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I never had asthma until a year and a half ago. One night, Gunnar and I were getting ready to go to bed in his bedroom back home in Long Island, like we had for years. Out of nowhere, my throat and chest started to feel very tight. “Oh no…” I thought, “I’m coming down...
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Darcy and I are writing complimentary blogs this week. We’re posting hers today and mine tomorrow! Gunnar and I have officially lived together for about a month, and I am here to report that it has felt very….. ordinary. My Mom says that if a relationship is right, living together should feel like home. Thus...
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