Log In or Register to Join The Conversation!
  • In recent years, I’ve cut back on meat consumption, but I do still eat it. My diet consists of a little bit of everything. I generally eat a LOT, but I’ve been pretty busy today so I’ve eaten lighter than most days.

    So far today, I had coffee and avocado toast for breakfast, almonds and raisins for a snack, and leftover lasagna for lunch (and…[Read more]

  • I just shared a little bit on Instagram about a conversation I had a few weeks ago. During this conversation, I was told that coronavirus is a “weak virus that only attacks weak people” and that if a person isn’t healthy enough to survive this pandemic, it’s due to their own health choices. To me, this translates to: if a person contracts and dies…[Read more]

    • I saw this post of yours on Instagram and LOVED it, so I’m so glad you’re talking about it more because I had so many thoughts. I guess my thoughts were really just a “slow clap” of applause… because I am so frustrated with the assumptions of worthiness in those with genetic or degenerative illnesses.

  • Jenny Livingston posted a new activity comment 3 weeks ago

    Bailey, no need to apologize — I don’t mind carrying the celebration over to another day! 🙂

    I want to point out that doing a job you genuinely love IS a celebration. Even if you never made a fuss or wanted to call attention to yourself, you were celebrating.

    Physically, I feel really good (something I am incredibly grateful for). Mentally…[Read more]

  • What beautiful thoughts, Paul. Thank you!
    “My favorite day!”

  • Jenny Livingston posted a new activity comment 3 weeks ago

    Hi, Ann! As Bailey mentioned, we are the moderators here. We are happy to help with anything you might need. Please never hesitate to reach out. We are so glad that you’ve joined us here!

  • Not to toot my own horn, but today is 33rd my birthday!🎉

    There was a time that birthdays didn’t mean that much to me. It would have been easy for me to let them slide by unacknowledged. But as I’ve gotten older, I’ve come to appreciate them so much more. In fact, I’m now a firm believer that we should celebrate the beauty of life anytime there…[Read more]

    • HAPPY BIRTHDAY!!! Sorry I did not toot your horn sooner or realize on the big day! I couldn’t agree more about the positive celebratory approach to special days. I am the worst about that (I’m always cynical and grouchy and not wanting to “make a big deal” if the focus is on me), but I really want to turn that around.

      Almost every single…[Read more]

      • Bailey, no need to apologize — I don’t mind carrying the celebration over to another day! 🙂

        I want to point out that doing a job you genuinely love IS a celebration. Even if you never made a fuss or wanted to call attention to yourself, you were celebrating.

        Physically, I feel really good (something I am incredibly grateful for). Mentally…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 1 day ago

    Becky, it may be that you need to post a new topic in order to include a photo, instead of trying to include one in this comment thread. I can see that you changed your profile picture (so nice to put a face to the name) but I believe if you want to post more pictures, you’d need to start a new topic — which you are always welcome to do! I hope…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 2 days ago

    Hi, Jessie! I’m Jenny, the other forum moderator. As Bailey said, we are happy you’re here and would love to help with anything you might need. Please don’t hesitate to reach out. Thank you for joining us on the forum!

  • I think we all have that tendency to tell ourselves stories. I tell myself stories about what it means to be a woman, a parent, a partner, etc. Challenging those stories is something I’m able to successfully do at times, but other times, I start believing them. Thanks for this reminder, Paul!

    And Bailey, something I find myself doing is pushing…[Read more]

  • Yesterday my family and I spent some time in the mountains where the air was crisp and cool. There was evidence of autumn all around us in the form of bright orange and red leaves. It’ll still be a while before there are cooler temperatures in the valley where I live, but I find myself so looking forward to my favorite season — fall.

    But even…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 3 days ago

    Hello, and welcome to the forums! I’m Jenny, one of the moderators here. You’ll soon be meeting Bailey, my friend and co-moderator. If you ever find yourself needing help navigating the forums, or if there’s every anything specific you’d like to discuss, please don’t hesitate to reach out. I’m so glad you’ve joined us here!

    What is your…[Read more]

  • Murphy’s law is another one that seems to be alive and well when it comes to CF. Hah! Thanks so much, Tim.

  • I’ve lived with CF long enough to know that the only certain thing about it is uncertainty. There have been countless times in my life that CF has thrown a wrench into even the best laid plans. As a child, I missed weeks of school at a time. As an adult, I was nearly fired from a job due to my “inconsistency.” As a college student, I took final…[Read more]

    • I feel for you so strongly with this school decision! I am literally studying curriculums right now for my girls for this next school year, and already panicking about math (which is not something I can successfully teach them by myself). Even though we’ve homeschooled for a few years now, it never makes it easier. (I think it’s worth it but……[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 6 days ago

    Bailey, “masochistic” is indeed the appropriate word to describe your relationship with hypertonic, hah! I’ve only ever been able to tolerate 3%. But, like you, I am a huge fan of CPT. My partner was a little uncomfortable when he was first learning how to it and I kept insisting, “I need you to pound MUCH harder.” 🙂

  • Paul, I really enjoy the thought of combining huff coughing or active cycle of breathing techniques with meditation. I find both mediation and yoga extremely helpful as I’m really dialed in and connected with my breath while practicing them. It’d be both easy and beneficial to add some huff coughs!

  • Vest.
    Pep.
    Manual CPT.
    MetaNeb.
    Huff coughing.
    Autogenic drainage.
    Active cycle of breathing.
    Airway oscillating devices.

    These are some methods of airway clearance that I’ve either tried or heard of. I’m a Vest and Pep girl myself, but I know that we all have a preferred way of doing things.

    What method of airway clearance is your…[Read more]

    • Love this question because we can learn so much from others and what works for them! For me, I honestly relied heavily on dance when I was able to dance 4 – 5 days a week for hours a time. I found that I coughed up the most muck after an intensive cardio and movement session like that (probably because it includes lots of jumping and heavy…[Read more]

      • Bailey, “masochistic” is indeed the appropriate word to describe your relationship with hypertonic, hah! I’ve only ever been able to tolerate 3%. But, like you, I am a huge fan of CPT. My partner was a little uncomfortable when he was first learning how to it and I kept insisting, “I need you to pound MUCH harder.” 🙂

  • Becky, this is amazing! I’m so happy to hear that her gut pain has gone away. Trikafta is doing amazing things!

  • Jenny Livingston posted a new activity comment 4 weeks ago

    Hey, Emma! I’m so happy to meet you! As Bailey mentioned, we are the forum moderators. We are glad that you’re here and we’re both happy to help if you ever need something. We hope you find this to be a safe and encouraging place. Thanks for joining us here!

  • Jenny Livingston posted a new activity comment 4 weeks ago

    Hi, Guily! So nice to meet you. As Bailey mentioned, we are the moderators here. We’re very glad you’ve joined us on the forums! We are both happy to help with anything you need, and we look forward to getting to know you!

  • Here in the US, the CF Foundation has made it possible for some patients to receive home spirometers free of charge. My clinic, so far, has not participated in this program. I understand that some of the machines have had tech issues, causing panic and frustration for those using them. Also, the home machines aren’t consistent with the machines…[Read more]

  • Load More
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account