Wednesday, June 28, 2017

Maintaining is Winning

I am a person who has a mindset of always trying to better myself... I want to improve, get better, get stronger, smarter, etc.. I think that is my biggest challenge with living with cystic fibrosis. I am constantly working my butt of to stay healthy and to try to improve my health, and yet, there are so many times when I don't feel like the numbers don't show that work. I have been compliant with treatments, working out, and I was at the beach last week, but my numbers were pretty much identical to my lung function in March. I had really hoped that they would have gone up at least a little bit. It was 43%.

I have to remind myself that with this disease, maintaining lung function is a win... it's a big victory. It's just hard to accept that sometimes, but I am working on it. That being said, I'm not giving up hope that my numbers will eventually work their way back up... that's part of what drives me to work as hard as I do.

In other news, my weight was also the same which is great! My doctor was happy with everything and pretty much told me to keep doing what I'm doing. I go back in September, so I'm going to keep pushing and see where it takes me then.

6 comments:

  1. The information is very good and very useful. I really like it and I am also waiting for the post information. And do not forget my friends visit my website :) thank you

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  2. Hi Kayla! I've been looking around your blog and appreciate that you are taking the time to share your journey with us so we can understand what it's like to have CF and raise awareness.

    I am working on a novel featuring two teen girls with CF, as I feel this particular condition is under-represented in YA fiction, and I was hoping to connect with you to possibly interview you as part of my research. I would like my work to accurately portray CF and what it's like to be a teenager living with it. I hope my work will raise awareness. My email is caroline.renee.mills@gmail.com if you would like to get in touch. Thanks so much and I wish you all the best!

    Caroline

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  3. Hi Kayla,
    Your blog is incredible and your journey is inspiring. Out of curiosity are you still on Orkambi?

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  4. I too have cystic fibrosis (as does my younger sister.) I'm grateful to have found your blog. Always refreshing to read from someone who understands -Jessica S

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  5. Actually nice and informative blog, Thanks for blog. Living Day

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