The Summit Foundation for Cystic Fibrosis

My first memoir

I have never blogged in my life. I have, however, read people’s blogs-does that qualify me to write my own? probably not. I think blog’s are a bit narcissistic but I am going to do one anyway. My name is Nicki Perkins and I am a 39 year-old woman with cystic fibrosis. Actually let me  qualify that, I am a 39 yr old woman who has earned not one but two university degrees, have been married for almost 14 years, run my own foundation for cf research, travel pretty extensively, speak spanish, have a huge support system of friends and family, am a dog mom for the 2nd time and oh I have this really crappy disease that gets in the way of all the other good stuff. I had to qualify that because I have NEVER let cf define me. I am not my disease. I currently have a 39% FEV1, a feeding tube to help nourish me and diabetes. I struggle everyday with something; stairs, carrying laundry, staying warm, a huge coughing fit, lost a contact, ran out of coke (the beverage), whatever. cf is an invisible disease and it is when I park in a handicap spot that I want to yell to the world “I need this spot too, I am broken too!”. On a side note: i use cf in small letters because it doesn’t deserve to be capitalized.  As I ramble I want to share my final thoughts to this first post, I never thought I would see my 40th birthday let alone see my 40th birthday without a lung transplant, well guess what? In exactly 6 months I will have achieved that goal. With cf, birthdays are a gift not a right…

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