TRIKAFTA!!!

 

November 6th, 2019 I swallowed my first dose of Trikafta!!!!! I have felt every emotion, some I didn’t even know existed. We have waited almost 40 1/2 years for this moment! 

Heres to hoping for a prolonged future, the chance to take a deep breath with ease, and ditching this damn leash... a girl can dream and I am dreaming BIG!!! I have really high hopes for this drug. I am putting every single egg in the basket and really it’s because I don’t have any other choice. I think it’s ok to want big changes and to want them instantly. But in reality I think it will take time and my continued hard work and determination. Trikafta has a lifetime of disease and damage to work around and I just have to remind myself of that.

I can’t help but feel excited and nervous, I am hopeful, and I am beyond grateful for the opportunity to take this drug that I have been waiting my whole life for. It does come with a heavy heart knowing that I have friends who need it now and don’t have it yet, and that I have friends who don’t even have this as an option. I see you guys. I love you guys. I promise you right now that I will NEVER stop fighting until everyone has a chance at something like this! When I say ‘Until It’s Done’, know that I say it with all of you on my mind and in my heart.

Today as I swallow my first dose I will be focused on visualizing a positive outcome with minimal side effects. I want to be able to live fully each day and not just survive. Im envisioning stronger lungs and deeper breaths. 

I swallow this first dose for all who have gone before me, my special angels watching over me that I can’t help but feel had a hand in all of this. For my family and friends and everyone who has gotten me to where I am today. Thank you! This is for all of you! I have to quote my friend Gunnar “I am holding in my hands 30 years of cystic fibrosis research, millions in fundraising, hundreds of thousands of volunteer hours, and tens of billions of dollars of drug development funding. It’s surreal.” I am incredibly grateful! Breathe out Love! Xo❤️

Five Feet Apart

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!! 

There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is. 

I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable! Last month I went with my parents and having them both tearing up next to me was an indescribable experience. I try to protect them from CF as much as I can but the truth is this is our reality. I don’t let too many people see the hard parts of CF, I guess my mindset is to always protect and be strong for everyone, I’m not too sure why I do this because it can be exhausting... I feel like it’s just the CF way, because I know I’m not the only one. There are some real, raw moments in this film and having my support system see it with me was a vulnerable feeling but at the same time it was liberating in a way to have them see the emotions I experience and all that takes place behind the scenes. 

As the cast was introduced to us and as they took on life with CF head on as so many of us with CF do I couldn’t help but feel Claire’s presence throughout the film. CF is different for everyone and although not everyone will relate to these stories that were portrayed so well I truly believe we will see a lil bit of ourselves within each character. Human connection is so important and when you live with a disease that prevents you from connecting with the very people that get what you’re going through having more people become aware and understand your world even if it’s just for two hours means more than you know. 

This film is bringing awareness to the forefront of a disease that so many people still don’t even know what it is, it’s going to be so eye opening for people. I truly believe it will help others have a greater understanding and new perspective not just of the CF community but the chronic illness community as a whole. There is so much more to CF than what you will see in this movie but this will get the conversations started and from there we can continue to educate and spread CF awareness. 

It’s pretty amazing to me that CF is changing before our very eyes with all these amazing modulators and the drugs that are in the pipeline. I believe CF as I know it and CF that is depicted in this film will soon be a distant memory and not the reality for the children that are diagnosed today, and that is worth celebrating! Breathe out Love! Xo❤️