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  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    Hey Leorelle! It’s so lovely to meet you. My name is Bailey and I am one of the co-moderators here on the forum. (Jenny, another Cfer and mother in her 30s is my counterpart… you’ll meet her soon!) We are here should you need help with anything at all- whether trouble shooting, navigating, or just a shoulder to lean on. Look forward to chatting…[Read more]

  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    I truly wish you could write a book about this. I would help you! This is speaking to my heart in so many profound ways.

  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    Tim, I don’t know if I realized your wife had a colectomy of sorts because… I did as well! We removed my colon and large intestine a couple of years ago (and appendix), and good golly Molly was it the best decision I’ve ever made. Although of course my GI can still be a mess, the improvement was enormous! Since then, I’ve noticed how many CFers…[Read more]

  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    I couldn’t agree more (your prior postings definitely inspired this forum topic!) and I am so curious why this isn’t more prevalently discussed. It’s fascinating to me that you mentioned cardiology, for example, because I am also a heart patient (Brugada) and the lung transplant doctor connected to my clinic has made many a comment about how there…[Read more]

  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    I absolutely love that quote and it really gives me major food for thought because- though I obviously write about CF issues and sociological impact in terms of my job- I rarely ever talk to my CF team about these topics or go beyond Op-Ed style advocacy. I’ll write about how “I wish we could have x, y, z”, but don’t do more beyond that to change…[Read more]

  • Bailey Vincent posted a new activity comment 1 day, 16 hours ago

    Becky, this is so amazing!!! Thanks for sharing a bit about her history (it’s actually reassuring to me in a kindred-spirits sort of way that she also had some GI muckery, as we can relate to one another). I’m curious as her Momma… Are you often able to be there with her during past hospital visits, or do you have to support from afar? I know…[Read more]

  • I wrote a column this week about weight gain in the CF community (especially with the release of gene moderators); in particular, how little education we have on the subject. Personally, I wish we discussed “why” gain has occurred (for example, sometimes mine is ascites and water weight from IVS… other times, muscle and yummy nutrition), versus…[Read more]

  • Bailey Vincent posted a new activity comment 2 days, 20 hours ago

    Ah, Happy Birthday to your sweet girl! It’s so funny how we both have 11-year-olds; friends from afar! Is she going through any sort of phases right now? My youngest is in the phase of being either an adorable cuddly koala, clinging to her childhood, or having zero patience for anyone and no ability to hold a chore list in her mind (haha).

    I…[Read more]

  • Yesterday I posted about which organ is impacted most by your disease process, but today I wanted to ask something that I’ve seen discussed a lot on the forums lately…

    Should CF clinics include ALL specialists?

    For myself personally, I have to attend my GI and colo-rectal doctors frequently, as well as my liver guy, my gastric pacemaker…[Read more]

  • Bailey Vincent posted a new activity comment 3 days, 16 hours ago

    This is FASCINATING. Thank you for sharing your findings and thoughts!

  • Bailey Vincent posted a new activity comment 3 days, 17 hours ago

    Paul, Thank you for your perspective. I don’t necessarily think contemplating our growth through difficult circumstances makes us prisoners behind bars, per say. I’d like to think I’m someone who hasn’t used this as an excuse, but I also think refuting it’s impact on my life entirely- in terms of finances and even reproductive standpoints- would…[Read more]

  • Bailey Vincent posted a new activity comment 3 days, 17 hours ago

    Okay…. We have the same brain today. I JUST posted asking which organ is impacted most? Let’s take this as a sign that: this needs to be talked about more!

    But you asked something really unique in that you said- ‘What symptoms do you have that differ from the “classic” explanation of CF? ‘- and I had not even thought about symptoms spe…[Read more]

  • If you had pick one organ that’s impacted the most by your disease process… Which is it?

    And, in doing so, which doctors feel the most important members of your team?

    Mine has undoubtedly been my stomach (as I wrote about recently on Instagram with some less-than-flattering photo memories), or- perhaps more specifically- my whole digestive…[Read more]

  • Who would you be if you weren’t sick?

    That’s a hard question, isn’t it? I like to think I never think about “what ifs” or letting sickness “stop me”, but in reality, if it weren’t for my health, my life would look different. That’s just the way it is. I wrote about how much I hate identifying as just one thing on my Instagram a couple of days…[Read more]

  • Bailey Vincent posted a new activity comment 1 week ago

    I love that you did this experiment! Those photos are the stinking cutest! So, I honestly am not extremely “comfortable” when I wear masks, especially depending on the material. But for me I think it’s just the nature of getting overheated and how anxious that makes me feel? I know there is no serious danger and (even if I desatted a little) no…[Read more]

  • Bailey Vincent posted a new activity comment 1 week ago

    Thank you for this insight and support! I have definitely had ulcers over the years (one time, over 6 at once!) and all sorts of issues that I didn’t think “came with CF.” Currently, it’s actually my bone health and spine that are impacting me the most. It makes sense with all the coughing and degeneration, but in my mind… It seems so…[Read more]

  • Bailey Vincent posted a new activity comment 1 week ago

    Hey April! My co-moderator Jenny already said hello, but I wanted to introduce myself really fast too. I’d love to know more about you, and your story, and what brings you here? If you ever need anything at all- just say the word!

  • Bailey Vincent posted a new activity comment 1 week ago

    I LOVE this question and I’ll be honest… I hadn’t thought about this through the lens of CF yet/before.

    When it comes to deafness, the Deaf community generally takes a straight forward approach, preferring the term Deaf. They take pride in being Deaf (with a capital D if you use the language and are part of the culture), as opposed to saying…[Read more]

  • Bailey Vincent posted a new activity comment 1 week ago

    So very true! Some of my friends have had their hormone levels enormously impacted, but that’s not something we routinely test and treat. Others have colon and stomach motility problems (like me) and so many other areas involved than we learn about. If I’m having a major GI issue, I still have to see my GI or colon or liver specialist (versus my…[Read more]

    • It would be very good if ” those other organ specialists could be hired at each clinic, so it can be a (mostly) one stop shop where everyone is communicating and seeing it through the same lens” happened. Some are but most are not and unfortunately most do not see the role CF has in the effect on “their” organ. We do need to keep pushing and…

      [Read more]

  • Bailey Vincent posted a new activity comment 1 week, 2 days ago

    The timing of this is fortuitous because… I am feeling the opposite of resilient right now!!! I had a discouraging medical day where I, frankly, really wanted “fast fixes” and was reminded there are none. So discouraging.

    However, after reading your question here and then mindlessly scrolling through Instagram (should I admit that?), I saw a vi…[Read more]

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