Hop On One Foot

When I was hospitalized last time(in October 2019), my doctor rushed in my room to tell me Trikafta had been approved. 

For 4 months we’ve all been going through a run around with insurance to get it approved. With more hiccups than once can count Trikafta finally showed up February 18th. It was brought down and I started it on February 19th.

There were many happy tears! 

With being in the hospital when I started Trikafta (and probably should have been a couple weeks ago-with a very fun exacerbation, and a large dip in PFT’s), 

This heart of mine was so full and so thankful; there’s no words to even describe that feeling.

Day 8 in the hospital, which was also day 7 on Trikafta. I was beyond happy that after repeating my PFT’s(pulmonary function test) my lung function had gone from 52%(when I was admitted, and the lowest I’ve ever been) to 74%!!! From antibiotics and Trikafta I was beyond thankful for the progress.

Each day I wake up; I am so thankful & have so much gratitude knowing God’s on my side...which makes every day a day to be thankful for & is one more day I get to wake up, fight, & live this beautiful life. 

I will complete a full 14 days of antibiotics, and come back for a follow up with my doctor at 4 weeks out of being on Trikafta. 

We are all anxious to see the results I will have with this amazing medicine. The testimonials have been phenomenal. 

But I don’t need to be greedy. I will be thankful for ANY improvement. 

ANYTHING is something to be thankful for. 

Like I was telling one of the traveling nurses this week when they asked how I like having CF. I am grateful. It makes me-ME. It makes me different. I don’t know any different. This is MY PERFECT life, and I will/would do whatever it takes to live this amazing life God blessed me with. It helps me appreciate life that much more; and like I told my nurse-if it was said that hopping on one foot could make a difference I would do it. 

I will do ANYTHING! to fight and live this beautiful life. 

ANYTHING!

Sometimes people take for granted how “good” life is. 

Sometimes people let the “petty” stuff get to them.

Take a minute and just think-YOU woke up today. 

That’s all that matters. 

Life is beautiful. Don’t take it for granted. LIVE this beautiful life you’ve been blessed with, spend it with those you love, take on adventures and make SO MANY memories!! ...and if you happen to live with something, such as an incurable like Cystic Fibrosis-I hope you fight, everyday-because this life....

This life is so beautiful and we need to live it. Don’t take any day for granted.

~God Bless 

It Doesn’t Work Anymore

It’s been a while since I’ve sat down to write(I say that all the time) but I truly find strength in writing when I don’t realize it. 

In October(during my last hospital stay) a new amazing CF medicine(Trikafta) got approved. I qualify for this drug. And since November we’ve been trying to get it approved. 

In that time; we entered my favorite time of the year.  I turned 25 in November. Thanksgiving. Christmas. 

All of my favorites. 

Last years ending was by far the best I’ve ever had. 

Speed up to January. I caught a bug. My lungs are wrecking little bits of havoc. 

That feeling of sandpaper scratching your skin-that times about 5; every time I cough. 

But that’s normal. My normal. 

Then I went on vacation to Arizona and felt amazing-no humidity, the mountains. Perfect weather. My lungs thrived. 

Shortly after coming back the sandpaper scratch, as I call it, has come back. 

My body does not tolerate oral antibiotics only IV form(except one medicine in liquid form). So I opted to try it to kick this little silliness in the butt. 

Well, the time has come to where the words “it doesn’t work anymore” has come. 

Talk about a little stomach punch. 

Old reliable is no more. My body has become immune to the Oral liquid antibiotic. 

This brings us current...my CF team has been calling every week to check on me and stubborn me-has officially scheduled a hospital stay. 

1 week out. 

My team is not to happy about that but its scheduled. 

CF doesn’t know time. It doesn’t know “schedules” and I may be more stubborn than people think-but I will fight till there’s nothing left in me for my health and this beautiful life. And I’m not so stubborn to let things get out of hand. 

I have been blessed with the most amazing life and I am going to live that life to the fullest. 

This is my normal. My beautiful everyday normal.

Through every single cough, sometimes throwing up, mucus plugs-I am still thankful for this life. And even more thankful to have CF.

I have full faith that soon I will get on Trikafta. 

Living this life isn’t for the weak. Especially those who are closest to us-and live with us. They are a blessing to “put up with us”. 

God put some special kinda of chords in those of us with CF. 

He gave a strength that is no doubt the highest there can be. He gave us willpower, fighting power, the gene to appreciate every single day. 

The ability to love more and make the most of this life. 

He made us warriors. 

Does that mean we’re perfect? And never have a “tough day”?

Not at all. There’s many times with silent cries wondering will this get better...but it’s always turned around with being thankful for seeing another day. 

Being thankful to love the little things. 

Learning to take nothing for granted. 

Does that mean hearing “it doesn’t work anymore” doesn’t hurt? 

For a mere second it feels like defeat. 

A gut punch. 

But it’s always reminded that God never gives you more than you can handle and everything happens for a reason. 

I may be a broken record when I say I love this life and am so thankful to have CF. But that will ring true forever. 

I can’t imagine my life without it. 

This life is so beautiful. Never take it for granted. 

Seeing life through a CFers eyes is one of the most priceless. 

So in a week when I go in for my “tune up”; and I lay on that table for a PICC line-I will be saying prayers to God-still thanking him for allowing me to live with this illness. 

Seeing how life is going to turn out-makes every single fight worth it. 

~God Bless