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What's Salty and Sweet, but Bitter if it Gets Hot?


Several weeks ago, I sent out a message to see if any of our board members and core team members had any questions about CF, or if they had any questions about my personal philosophy on things, from a CF patient’s perspective. I haven't received any yet, but came up with a few of my own for the general population; those who haven’t been fighting their entire lives, every day. Of course these are rhetorical. I know the answer to all is "fabulous." 


1.       What is it like to be able to eat what you want without having to take a handful of pills each mealtime without having to stay in the bathroom for 3 days?


2.       What do you do with all that free time on your hands when you’re not doing treatments and strapped to a vest and nebulizer? That’s a month of a CF patient’s life each year just gone. I can’t imagine what I could do with 12 months in a year. Can you?


3.       What is it like to be able to go and shop for life insurance?


4.       How does it feel to grow up knowing that you will probably live into your 70's?


5.       What’s it like to never go through life and cough up 12 oz of blood in a sitting before the age of 20, wondering if it would ever stop or if you would live through it? Truly believing you are about to die is very liberating.


6.       How do you handle being able to treat life like a sprint and a marathon at the same time? OMG the possibilities are endless. 


7.       What’s it like to be able to look for a job and not have to worry about the specifics of their health insurance?


8.       What’s it like to travel freely, not having to worry about the possibility of a health crisis in an environment that’s not equipped or knowledgeable enough to handle it?


Here’s to those who’ve never complained or asked, “why me.” But have often asked, “what if?”


Surf. Salt. Survive.

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