• I always like to clean the house and make sure the fridge is stocked. There’s nothing worse than not feeling well and also having a gross house or no food available! I also like to eat a big, special, delicious meal before going NPO. As you can probably tell, I’m very food-motivated. 🙂

    Hope your surgery goes well!

  • In our household, it depends on the type of sickness. I have a bizarre ability to avoid stomach bugs (knock on wood) so if it’s a stomach virus — puking, diarrhea, etc. — I have no issues. I’ll let my daughter climb right into bed with me so I can comfort her and/or help her reach the barf bucket in time.

    I’m always far more worried when it’s…[Read more]

  • Rare Disease Day is celebrated on the last day of February with the intent to raise awareness about rare diseases and their impact on patients’ lives. In the spirit of Rare Disease Day, community members are sharing videos of what makes them rare. Check out these videos for inspiration, then (if you’re comfortable) submit your own!

    Luisa: https:…[Read more]

  • Pills, nebulized meds, inhalers, sinus rinses, more pills, cleaning equipment, blood sugar monitoring, refilling prescriptions, scheduling appointments, more pills, treatments, attending appointments, and oh! — did I mention pills?

    The daily CF grind can be exhausting. There’s just so much to do and keep track of! I’ve been living with CF for…[Read more]

    • I would love to hear these too! I am basically the WORST at keeping track. I try to keep a small bag of my most pertinent, everyday meds that I throw in my dance bag before I rush off for work, so I’m less likely to forget. Or I try to keep nighttime meds in my eyeline in my bedroom so I can’t avoid them (but that’s not always the prettiest in…[Read more]

  • So, I’ve always been very independent and autonomous regarding my healthcare. I’d been in a relationship where my partner didn’t want to be involved very much, and over the years I became very protective of that part of my life. I was rather proud of the fact that I dealt with most things alone (and quite well, I might add).

    But when my current…[Read more]

  • Jenny Livingston posted a new activity comment 1 day, 11 hours ago

    This is a really interesting concept. Forums, Instagram and Facebook have been ways that I keep in touch with the CF community, but an app would add a level of convenience that would certainly be nice! I love the story of you and your friend passing notes!
    • Jenny Livingston posted a new activity comment 1 day, 11 hours ago

      Hello, Tyler! Welcome to the forums. I’m Jenny (32 with CF), one of the moderators here. I hope you’ll find the answers to some of your questions. If you need any assistance, whether it’s about navigating the forums or specific questions/topics you’d like to discuss, please feel free to reach out to myself or @bailey-vincent, our other forum…[Read more]

    • For the past couple weeks, I’ve been taking antibiotics to treat pneumonia. During that time, I’ve complained about the side effects far more than I’d like to admit.

      I recently posted about how my doctor and I were both surprised to discover that I had pneumonia. Based on my symptoms (or, rather, lack of them) we never would have guessed it.…[Read more]

      • YES! I was admitted a couple of months ago for acute kidney failure, but I didn’t feel like anything was failing or going wrong, and I felt downright silly going to the ER like my doctor told me. I kept apologizing for being there, like: “I’m not even in pain. Sorry if I’m wasting your guys time. Just following doctor’s orders.” And then, of…[Read more]

    • Jenny Livingston posted a new activity comment 6 days, 12 hours ago

      Hi, Danielle! Welcome to the forums! I’m Jenny (32 years old with CF) and I’m one of the moderators here. Thanks for joining us. If you have any questions or need help in any way, please don’t hesitate to reach out to myself or my co-moderator @bailey-vincent. We are happy to help and so glad that you’re here!

    • Jenny Livingston posted a new activity comment 6 days, 12 hours ago

      Because Teresa and I culture such different things, and we each have very resistant bacteria, we’re very careful. We don’t ride in the same car, sleep in the same house, share anything, prepare food that the other will eat, etc. We live across the country and see each other once a year. We have a very close relationship even without that physical…[Read more]

    • Jenny Livingston posted a new activity comment 1 week ago

      Hello, Martha! Welcome to the forums! I’m Jenny, one of the moderators here. If you need any help navigating the forums or have any questions, please reach out to myself or my co-moderator @bailey-vincent. We are happy to help and so glad that you’re here!

    • Jenny Livingston posted a new activity comment 1 week ago

      @@mauritaah hello and welcome to the forums! We’re so glad that you’ve joined us here! I’m Jenny (32 with CF) one of the moderators here, along with the lovely @bailey-vincent. Please let us know if you have any questions or if there is something specific you would like to discuss. We are happy to help!

    • On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes embarassing or difficult to talk about. Join the conversation on Instagram or here in the forum.

      In 2016, several weeks after a hospitalization, I began losing my hair. I’ve always been a shedder, but thi…[Read more]

      • Knock on wood I haven’t experienced this too too badly myself (though I worry about it with all the meds and stress and so on), but I know some friends who have! I DO find that my hair takes a hit when I’m in the hospital for awhile, because it isn’t cared for as well, and gets tangly really fast. Because I have curly hair, I try to go into…[Read more]

    • At CF News Today, we are celebrating Rare Disease Day, which is February 29. It is a day when we shout loud and proud to the world that we have forged uniquely powerful identities through the odysseys of our conditions. It’s the day we demand more awareness, more action, more compassion. Let’s flood the internet with our voices to make our…[Read more]

    • Jenny Livingston posted a new activity comment 1 week, 2 days ago

      Dakodah, hello and welcome to the forums! I’m Jenny (32 with CF), one of the moderators. If you have any questions or need help navigating the forums, please reach out to myself or @bailey-vincent, our other forum moderator. We are happy to help and so glad that you’re here!

    • Yesterday, I posted this little video of my sisters who made a little appearance on the news in 1986. I got several responses like, “I didn’t know you had sisters with CF” or “what was it like growing up with multiple CF kids in the house?”

      Both my older sisters were born with CF. After they were born, my parents had two boys (my older…[Read more]

      • So many families seem to have more than one kiddo with CF, and siblings definitely get within 6 feet of one another growing up. How do you and your sister Teresa take precautions now, if you don’t mind my asking? I definitely feel like, when it comes to family, I’d be a lot more obstinate about certain precautions. But I’m fortunate in that I…[Read more]

        • Because Teresa and I culture such different things, and we each have very resistant bacteria, we’re very careful. We don’t ride in the same car, sleep in the same house, share anything, prepare food that the other will eat, etc. We live across the country and see each other once a year. We have a very close relationship even without that physical…[Read more]

    • I, too, am a bathroom and car crier. I’ve been doing it since I was a teenager — trying to hide those breakdowns from others. I didn’t want to burden anyone or make them think I was weak or overreacting to something. Then my therapist told some something that hid pretty hard. “Vulnerability is strength,” he said.

      When someone tells me they’re…[Read more]

    • @bailey-vincent I think I just look “healthier” than people generally expect. On one hand, as you said, it’s nice because I don’t want to look sick all the time. But it also feels really invalidating. I’ve even had a doctor approach me while inpatient and say, “You don’t look like you should be here. Are you sure you’re sick?” It was obviously…[Read more]

    • “Self-care” seems to be a very trendy phrase right now. From status updates to blogs to news articles, self-care is surging in popularity! When I first started seeing this self-care trend emerge, I was a little annoyed. “All I ever do is take care of myself,” I thought.

      But a conversation with a good friend helped me reframe my thinking…[Read more]

      • I think self care IS necessary in terms of finding times to relax, connect, and prioritize mental health… but I have so little time to do it, that I actually have a lot of misplaced guilt about self-care. I legitimately feel guilty for not having enough time to prioritize myself, which just adds another layer of stress to the whole thing. And…[Read more]

    • Hi friends, for today’s WCW — we’re doing something a little different. Today we have Emmanuele, who is 22 years old and is from Rondonia, Brazil. We asked @emmanuele.machado to share a little of her story with CF, while living in Brazil. Be sure to answer her Q in the comments:

      🦁I’m 22 years old and live in Vilhena, RO. I’ve spent a lot o…[Read more]

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