(Warning: I wrote this while in a place of upset, so keep that in mind and bear with me. In the interest of being honest and showing you a “behind the scenes moment,” I recorded what I was feeling after receiving some not so great news and wrote this post based on it. I’ve since cried it out – a LOT – and while I’m still worried and sad and anxious, I’m dealing with it and am feeling hopeful (with my fingers and toes crossed!).)
Cystic fibrosis is a bitch.
I was ready to write a post about the GOOD in my life. Wedding planning. Buying a house. 73% lung function. The wonderful man I get to do all this with.
And then I got a phone call. “You might have to go on IVs again.” After the wedding (thankfully), for 4 to 6 weeks this time.
A new bacteria is growing and they don’t know what it is yet. In two weeks or so I’ll need to give them another sputum culture so they can determine the next step. One of the three possibilities is IVs.
It’s unfair. I’ve done EVERYthing right. My lung function is the highest it’s been in 4 YEARS. But one bacteria could set me back so they want to get rid of it. As fast as they can. And I get that.
But I just want a break. I want a few months of things going okay. Of normalcy. Of coming home and cooking dinner… going to the gym… getting a good night’s sleep.
This year has NOT given me that. And sometimes it’s increasingly harder to see the light at the end of the tunnel. To believe that there even IS a light at the end of the tunnel.
I’m still SO thankful for everything I have in my life right now. I’m blessed with so many things. But it’s hard not to feel defeated. To wonder when my life will go back to “normal” or to know when to accept this as my NEW “normal.”
One step at a time. One day at a time. And I’ll get there.