Make CF Stand for Cure Found

Before I get to the main focus of this post, I have to just say one thing that’s been on my mind: I will NOT let this disease get me. I refuse to believe that I will die from cystic fibrosis. And I’m going to keep myself as healthy as I can to make sure I’m around WHEN a cure is found, not if.

I’ve made it a point not to let having cystic fibrosis define me or rule my life. Sometimes to a fault. There’s a fine line between doing what you can to maintain your disease and letting it control you.

I’m sure those that are in similar situations have their own ways of thinking about this. This is mine. I just believe that living intoΒ your disease, assuming all the bad things associated with whatever ailment it is WILL happen, is no way to live. Self-fulfilling prophecy, as they say.

Okay, rant over. πŸ™‚

Let’s see, where did I leave off?

Ah, my last Hopkins appointment. Well, it went okay. Scratch that, it went terrific. My lung function went from 64% to 71% – I’m now back to where I was seven years ago. And considering this is a disease that gets worse with time, that’s pretty darn good.

But I want to do better. So I’m trying to get my compliance from 80% to 90%. As well as get back in my workout routine, which I’ve been neglecting since the 5K.

My next appointment is on May 25, just a little more than a month from now. And I’ll be sure to let you know how that goes. Here’s hoping for 80% lung function! And if I get there, I might just get a puppy or a tattoo… right, Mike? πŸ˜‰

In other news, as some of you might have seen via Twitter, I’ll be speaking at a CF-sponsored event this Saturday –Β the Grand National Steeplechase Luncheon.

This is my first time speaking to such a large crowd (around 300 people!) and I’m incredibly nervous.

When I was first asked I considered saying no. But the more I thought about it, I realized what a fantastic opportunity it would be. And if fear was my only reason for NOT doing it, well that wasn’t enough of a reason.

I’m excited to share my story. But more importantly, I can’t wait to get people EXCITED! A cure for cystic fibrosis could be found in my lifetime, and those that donate to the cause now could be a part of that.

I’ll be back to let you know how that goes. Send good vibes my way! And if you want to donate to the CF Foundation, just click here.

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15 thoughts on “Make CF Stand for Cure Found

  1. You are going to inspire those people on Saturday MORE than you already inspire all of us!! I am so proud of you – you are such an amazing person.

    And your lung function will get ABOVE 80%! I’m sure of it! πŸ™‚

  2. I really love your way of thinking. I only met you for a short period of time, but that positivity radiated off you and it’s amazing.

    Good luck with your speaking engagement, you’ll do great!

    And congrats about your appointment, that’s awesome!

  3. If I’ve learned anything from Ashley, it’s that there’s a difference between having a disease and BEHAVING as though you do. Sounds like you’re perfectly aware of that already, so you’ll be fine.

    That being said, don’t forget that we’re here for you when you need us.

    Good luck on your speech. Keep your mind on your goal (a cure within our lifetime!) and you’ll be great!

  4. GO KAT! I am so glad your lung function is back up that high! Keep aiming higher and higher!!!

    You will do GREAT speaking. Your in-head practice (like voicemails) will help you tremendously! (Plus, you’re a natural leader — people will listen!) πŸ™‚ Good luck!

  5. Oh my gosh that’s AWESOME!!!! What a big improvement over such short time- I’m confident you’ll surpass your next goal.
    You will do fantastic on Saturday- you’re such an inspiration and the people who hear you speak will listen and HEAR you πŸ™‚ Good for you for conquering your fear head on!

  6. Congrats on the amazing progress!!! your hard work and positive attitude are an inspiration!

    Also, I support having a puppy as a reward for progress at your next appointment!

  7. Congrats on the good news (and good progress)!

    And also – I love your attitude. A lot of people, regardless of the circumstance, will often take on a “woe is me” attitude. I love that you don’t!

    Oh and you should totally reward yourself with a puppy!

  8. I can’t wait to hear how it went. I agree with what everyone else has said you are just so amazing. I mean, wow, I just can’t put into words how much your positive energy and outlook just spill over into everything you do. You are such a strong woman, and for that reason and many more, you WILL be around and healthier than ever when a cure is found. πŸ™‚

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