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  • On Instagram over the weekend, I rehashed the story of a freak accident that took place 10 years ago. It’s a strange story involving a lawnmower, Home Depot, my ex-husband, and a severed Achilles tendon. The months of recovery that followed were some of the most difficult of my life.

    A doctor once told me that I have a “tendency for the…[Read more]

    • Oh my golly… anything involving the Achilles tendon is my absolute worst nightmare because of dance. (It’s one of the most common dance injuries, and I’ve heard all the scary “snapping on stage” stories one can take!) Wow. What was recovery like for you?

      If I had to answer your question in one word: YES… I find that if there is only “1% of…[Read more]

  • Becky, this is amazing! I’m so glad to hear about these positive changes. Being a mother myself, I can only imagine how full your heart is as you see these things taking place. Sending love to you and Kelly!

  • I recently had my first telehealth CF clinic appointment. To be entirely honest, I didn’t have high hopes or expectations for it. I simply didn’t see how an appointment over the phone could come close to the level of care I receive in clinic (not to mention that PFTs were out of the question).

    As great as my team is, I just didn’t imagine my…[Read more]

    • I had my first CF Telehealth the other day, as well, and was ALSO pleasantly surprised! Mine was through video chat (since I’m deaf and usually have an interpreter present), and I felt less stressed knowing I didn’t have to drive far, hurry inside, or worry about what I’m wearing, etc. (That part maybe sounds silly, but I am who I am, lol).

      My…[Read more]

  • Oh, Bailey, I love this! The only times I’ve had to be a care partner (a phrase I learned on your IG post) are following a shoulder surgery my partner had and, of course, when my daughter has been sick or had minor procedures. Like you, I get pretty intense! Hah!

    In a way it’s nice to be there for someone else, but it also gives me a tiny…[Read more]

  • I’m a huge fan of mental health therapy! It’s been so beneficial in my life. My clinic does a great job of prioritizing mental health, but we don’t have a clinical psychologist on staff. I’ve worked closely with my CF social worker to manage some health-related stress and procedural anxiety. She has been phenomenal!

    Outside of clinic, I see a…[Read more]

  • During my hiatus from the forums, I shared an update on Instagram that I wanted to quickly share here as well.

    I started Trikafta in November, near the end of a two week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling overall. I was NOT one of…[Read more]

    • This is just so amazing. Do you find that your laugh is different without a cough? What about your singing voice or your speaking voice? I realize I have hearing loss so this is weird stuff to wonder, haha, but I’ve been thinking about that when I imagine a life without coughing.

  • My pancreas has always been mildly “wonky” in that I’m pancreatic insufficient and require enzymes. But I’ve been lucky that it hasn’t caused any other issues thus far. And my liver takes the abuse from our sometimes toxic medications like a total champ! Again, just dumb luck.

    I know that pancreas pain can be incredibly intense and debilitating.…[Read more]

  • Jenny Livingston posted a new activity comment 5 days, 18 hours ago

    Hi, Kimberly! Thanks for joining us here. I’m Jenny, one of the forum moderators. My co-moderator (@bailey-vincent) and I are here to offer support, answer questions, or simply chat if you ever want to. I hope you find the forum to be a safe, educational, and (hopefully) fun place for you. Please reach out if you ever have any questions.
    • @ashjeand Hey! In response to your question, I’d like to tell a quick story:

      I clearly remember an experience when I was 19 years old. I was sitting in the hospital lobby after a CF clinic appointment, and a woman was sitting across from me with her baby. She was holding a binder labeled ‘What Comes After Diagnosis’ and she was sobbing into the…[Read more]

    • It goes without saying that many of our lives have drastically changed since this pandemic began. I don’t want to dismiss the very real struggles many people are facing during this time, but at this particular moment I want to focus on something a bit less heavy.

      Since spending so much more time at home, I’ve had some extra time to…[Read more]

      • I LOVE this!!! What’s the puppy’s name and what type of dog? We did not jump on the puppy train (though I’d love to, haha), but I have been working on a fiction novella for fun, reading more, and want to start a family band. I have no musical talent… but I really think we could be huge.

    • Jenny Livingston posted a new activity comment 1 week ago

      Hi, Renee! I’m Jenny, one of the moderators of the forums. If you need any help navigating the forums or have any questions, please don’t hesitate to reach out to myself or our other moderator, @bailey-vincent. We are both happy to help and so glad that you’re here!
      • I’m Jenny, one of the moderators of this forum. My co-moderator (the lovely @bailey-vincent) and I have been on hiatus for a few months, but I am happy to report that we are back! She will also be posting to reintroduce herself soon, so especially if you haven’t met her yet, be sure to watch for her post.
        A little more about myself: I am 32…

        [Read more]

      • Here in the United States, we’re seeing massive school closures across the country due to COVID-19. Colleges and universities have moved to online instruction, and most K-12 schools have been closed for the time being.

        My daughter’s school, for now, is doing distance learning. Her teacher records “welcome” videos each morning and talks…[Read more]

        • I love that it’s going so well for you and her! Her teacher sounds amazing. Both of my girls are already homeschooled, so not much has changed for us… but a LOT has changed for us in terms of extracurriculars. They are so used to staying active in the evenings, whether dance or Civil Air Patrol or all their activities, and I think feeling…[Read more]

      • I was supposed to have CF clinic (a post-pneumonia follow up) on Monday. As recently as Thursday, I had spoken to my nurse coordinator and we’d decided that the benefit outweighed the risk and we planned to keep the appointment. But by Sunday night, things had changed. I got a call from the PFT lab at 9:00 pm. They were letting me know that they…[Read more]

      • For me, Five Feet Apart did a great job portraying the relationships between patients with CF, and nurse/patient relationships. I’ve had a couple Barbs in my life (without so many HIPPA violations). And the relationship between Stella and Poe really got to me. When Stella cries out, “he was my best friend and I never hugged him.” AH, MY HEART! I…[Read more]

      • During this time, many of us (hopefully all of us, actually) are practicing social distancing and self-isolation. The CF community is high-risk, which means that we need to be taking extra precautions. Fortunately, we’ve been practicing for this our entire lives — we’re pros at infection control!

        What I’m curious about right now is how…[Read more]

        • I’m sort of ashamed to say that my favorite way of connecting with the world is Instagram… but it’s true! I don’t have all the social medias (no Snapchat or TikTok or Facebook), but I find IG rather calming because I can choose to just look at images, or just read captions, but I don’t necessarily have the same panic or politics that can…[Read more]

      • The benefits of exercise are pretty well-understood in our community, but that doesn’t mean it’s always easy to maintain a workout routine. I’ve talked before about how I tend to fall off the exercise wagon every now and then and sometimes I really struggle to get back on.

        But I’ve found something that has not only helped me ease back in…[Read more]

        • Now that I’m stuck indoors and unable to get to the studio, I am hoping to do more ballet barres at home on my own (just blasting music until it fills the house and doing my own thing at the kitchen counter), or using some of my favorite muscle therapy tools like my foam rollers and balance board.

          I also have Sleek Technique DVDs which I really…[Read more]

      • Jenny Livingston posted a new activity comment 4 months ago

        Hi, Tim! Thanks for joining us here on the forums. I’m Jenny, one of the moderators here. If you find yourself in need of help or have something specific you’d like to discuss, please feel free to reach out to myself or my co-moderator @bailey-vincent.

      • Jenny Livingston posted a new activity comment 4 months ago

        Hi, Tim! Thanks for joining us here on the forums. I’m Jenny, one of the moderators here. If you find yourself in need of help or have something specific you’d like to discuss, please feel free to reach out to myself or my co-moderator @bailey-vincent.

      • Jenny Livingston posted a new activity comment 4 months ago

        Hi, Jason. Welcome to the forums! I’m Jenny, one of the moderators here. I also come from a family where 3 of us have CF!

        Should you need any help navigating the forums, or if there is anything in specific you’d like to discuss, please feel free to reach out to myself or my co-moderator @baiely-vincent. We are happy to help and so glad that…[Read more]

        • Thank you Jenny and nice to meet you, hoepfully I learn somethign here and possibly give some insight to life and a family with CF!
            • Hey Jason! Yes, I look forward to knowing more about you, your story, and your connection with CF. Like Jenny said, we are here if you need help with anything. It’s nice to meet you!

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