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