Not What I Wanted to Write

(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.Ā 

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.


8 thoughts on “Not What I Wanted to Write

  1. You are my hero! This is a setback no one would have dreamed of for you at this time in your life, but you are handling it with your usual grace and positive thinking. You are an example of how we should all face adversity, and I’m sorry that you have to bear it. You are surrounded with the love and support of many friends and family…please just ask for any help you need – it’s how people can show their love for you. You will have a happy wedding day and a happy life…and these giant boulders in your path will not withstand your giant spirit! I love you with all my heart.

  2. Kath, I’m not even sure what to say other than you are one of the strongest people I know. I will cross my fingers (and toes) for you, and will be there if you need anything. You have such a great support system- Mike, family, friends. We are all here for you. Hugs!

  3. You are doing everything right! That’s why they caught this bug and have a plan. It isn’t the best time for sure and you are allowed to express your feelings about that. I think that is the healthiest response. You do a great job with your health and will continue to do that. We are all so proud of you and support you in everything that you do. Love you a bunch šŸ™‚
    Margaret & Carl

  4. Katharine, I am so sorry to hear this. As Margaret said, they caught the bacteria, and want to review more.
    The good news also is that IV is only one of the three options!
    The other good news is that it can wait until AFTER your wedding. YAY!
    There isn’t much you can do right now, as it sounds, but you CAN be with Mike, preparing for your future, and deal with the bacteria when the time comes.
    You are going to be a GORGEOUS bride, and I can’t wait to see photos!
    Congratulations — and I know you are going to kick this bacteria’s butt! šŸ™‚

  5. Sigh – this post brought me to tears because I can so relate. While I myself am not going through what you are, I feel so many of those same feelings about my child and what she is going through. I will say some prayers that no PICC is necessary, and that this new bacteria goes away quickly. In the meantime, sending you a virtual hug.

  6. *Hugs* You know, wedding planning is really fun, but it can be super stressful. It’s ok to not feel completely blissed out. I hope things get better soon!

  7. I understand. I just want a break from it all. The appointments, the treatments, the changes to my life, feeling like I’m losing more and more of “me” with each new normal. I think I need to stop looking to the end of the tunnel for the light and finding it around me instead. Sounds like you’ve got some great ones around you with the future mister and all these commenters. Here’s hoping your body gives you a chance to take a breath and enjoy them. *Spoonie Hugs*

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