On Not Feeling Well and a Thank You

the VEST - my best friend the past couple weeks
the VEST – my best friend the past couple weeks

Guys, I can’t even begin to explain how much all the love you showed after my blog post meant to me. You always know exactly how to lift me up when I need it most. THANK YOU. I often fear I leave this space for too long and will come back to silence, but you are some of the most loyal blog readers I could ever ask for. Thank you for that, too.

Basically, just know I am so very grateful for each and every one of you

* * *

In some not so great news, after over two weeks of not feeling well, I’m heading to Hopkins tomorrow (Tuesday) to see if they can figure out what’s going on.

I’m coughing up more mucus – well, coughing more, period – and I have a deep ache in my chest. Despite doubling up on treatments – a process that takes three to four hours a day – I still don’t feel as well as I should. Better maybe, but not great.

(That pic up there? That’s me and my VEST – a form of airway clearance. We’ve become pretty close lately. Maybe I should name it – suggestions welcome.)

Doubling my treatments means meds and work alone takes up 12 hours of my day. Not eating, not sleeping, not doing regular household things, not spending time with Mike – just meds and work. And I might be a little less grumpy if it was helping, but It’s frustrating to work twice as hard to feel only half as good.

But what’s weighing on me most heavily is the fear that’s always in the back of my mind: What if this is it? What if this is my new normal? What if I don’t get to feel better than this?

Because that’s what cystic fibrosis is. A progressive disease that no matter what I do gets worse with time.

I know that kind of thinking doesn’t do any good. So instead I’m telling myself this is just a hiccup. Some extra gunk that needs clearing out. A bacteria they can treat. And with some time I’ll get back to feeling like myself.

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6 thoughts on “On Not Feeling Well and a Thank You

  1. I’ve got it! The best shall be named Ryan Gosling. That way you can think happy thoughts during treatments and pretend it’s a long hug from Mr. Gosling instead 😉
    xo

  2. Good luck! I sooooo know this feeling where all you feel like you do is vest and work. It’s almost robotic and it was one of the toughest places of my life. I’ve also had weird bouts where I feel like I can do my vest and meds multiple times a day and it feels like the well of gunk is never ending. I know everyone’s CF is different but what you describe hits close to home. Sending you love and prayers. Xo

  3. Hi Katharine,

    I clicked over from your CFF post because your story resonated so much with me. I was diagnosed with CF at 28- and I just turned 30. What a world-rocker. I completely relate to your struggle with appreciating our “luck” for having a less severe disease than so many others do, and the constant, never-ending uncertainty and worry. Figuring out how to fit treatments into daily life when there’s so much else I’d rather do, the dread before every doctor’s visit if it’s going to be the one where I get the really bad news, feeling like I’m a difficult person to have in the lives of loved ones… I hear you.

    As a fellow Baltimore-area native (now transplanted to the West Coast), bookworm, FNL lover, and CF sufferer… let me know if you ever want to chat. Because I sure do feel ya.

    Your appointment has passed now, but I hope they have some answers to ease your symptoms and your worries.

  4. Just found you today through a Facebook post from CFF about your story. It was like looking in the mirror. It spoke to my heart, and so does your blog.

    I was also diagnosed in high school – age 16, and am now 30. I’m a CFer with a husband, and on Thursday- a 1 year old! I live outside of DC, and the super nerd in me wants to be all “omg, be my best friend!!” But that’s pretty creepy coming from a stranger. Honestly though, it would be nice to connect some time… Just to talk to someone that “gets it”.

    The fear of “is this my new normal”… You could be inside my head. I will definitely be a loyal reader. Thanks for being out there!!

    Jenny

    • Jenny, thank you so much for your comment. It really does sound like our CF story has been on an identical path! I’d love to chat more so I’ll send you an email. Talk soon!

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