A Day to Remember

Today is a day to remember, as the FDA approved a new Cystic Fibrosis Medicine that works with one of the mutations I have. 

I have so many thoughts on what I could write(and what I will share soon) but I simply wanted to share what I wrote on my Facebook page today(The Joys of Having CF).

My thoughts I shared “in the moment” as I saw the news and my doctor came into my hospital room.

I had also shared the FDA website as reference to the post.

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A DAY TO REMEMBER!! 

THIS was APPROVED TODAY! There are no words other than Thank you! to all the doctors, researchers, and everyone who donates. 

The difference this will make in not only mine, but everyone’s life who this will help! For 25 years! this is what we’ve been waiting for. It’s not a cure-but this is sure one of the biggest steps towards one. I can not wait to see how this will affect life. 

Being in the hospital while this is approved(so close to my birthday)-my doctor came in less than an hour after news broke to let me know. He wanted to make sure I was the first to know. 

I feel so blessed to have such an amazing doctor!

Please pray that all of us who qualify-also have insurance that will let us get this medicine! 

Next to the day we can receive it-this is a day to remember!!!

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Soon I will do an update on my latest 14 day hospital stay but this news was more important and I wanted to share my thoughts on “approval day”.

We simply now have to wait for the insurance process to start-which could be months-but there is a light that we all can look forward to.

For now-Thank you to everyone-are fight is far from over but we are making great strides in the right direction every day and we need to celebrate these victories.

~God Bless

Paige 

Do You Ever Get Afraid?

Do I Get Afraid of Hospital Stays?

That is a question I get asked a lot. Do I get afraid? Am I afraid?

The answer-Sometimes-but not for reasons you’d think. We’re all human.

Do I get afraid for hospital stays? No. Hospital stays are so routine for me after almost 25 years that it’s like second nature. I go in knowing that this is MY normal. It’s a way to make me take a break to get better. I go in knowing that it’s to make these beautiful lungs healthier again-to in turn live a longer life. Period. I would/will do anything to keep these precious lungs healthy. 

Am I afraid? Now that could be a loaded question with so many answers. My main answer is sometimes. 

Sometimes I get afraid of maybe not being around as long as I’d like, not hitting all my goals, or achieving all my dreams. 

Sometimes I get afraid of not finding the one yet and when I do not having enough time with them. 

But fact of the matter is those are things NONE of us can control. Only God. 

So after saying all that...am I afraid? No....because I know in my heart that whatever God has planned for me will be what is supposed to happen. 

That may sound crazy to some-but it puts me at ease. 

I am already the person who worries/sometimes stresses over silly things. 

I am NOT perfect by any means. But I have learned that for me-leaving everything up to Gods hands is always the best. 

He helps me not be afraid and to trust in him. 

Now sometimes that is way easier said than done. 

But everyday I remind myself that if I woke up today-I can face whatever is brought my way. 

So; do I get afraid of hospital stays? No

Am I afraid? No

lwe’re all human, but we can’t let our fears get in the way and stop us from living the life we dream. 

~God Bless