@bailey-vincent
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Bailey Vincent posted a new activity comment 1 week, 1 day ago
There is so much stigma with mental health that it’s hard to open up as a professional, without feeling like you look “unprofessional” to someone else (or at least that’s what I’ve worried about in the past). And I hate that, for myself and others.
Recently, a friend of mine was referencing how much she loves this new generation because they’re…[Read more]
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Bailey Vincent started the topic Quarantine Routine: What's Yours? in the forum Coronavirus (COVID-19) and CF 1 week, 1 day ago
I am already trying to think about topics for my column next week, and I keep coming back to the notion of a Quarantine Routine and how much I need one for myself. I’ve seen others posting about what they’re doing while social distancing or stuck at home, whether that be daily workouts, or cooking, or crafting projects… And I was wondering:…[Read more]
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Bailey Vincent started the topic Do You Have CF AND Another Disease? in the forum Adults With Cystic Fibrosis 1 week, 3 days ago
I wrote a column this week called “I Don’t Fit the Description of What CF Is Supposed to Be” and I’m wondering: How many of you have some other illness that doesn’t commonly connect to CF?
I have friends who have CF and fibromyalgia. Or CF and something else. Does anyone else have “CF And”?
I personally consider all of my complications…[Read more]
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Bailey Vincent posted a new activity comment 1 week, 3 days ago
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]
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Bailey Vincent started the topic What Does Compliance Mean During the Coronavirus in the forum Coronavirus (COVID-19) and CF 1 week, 5 days ago
I have read the advice about cancelling all non-urgent medical appointments amid the COVID-19 outbreak but I can’t help but wonder: What does compliance mean during the coronavirus?
I have an important appointment tomorrow that is not medically urgent (I’m not in pain at this moment) but it IS in the sense that it’s dealing with something…[Read more]
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Bailey Vincent posted a new activity comment 1 week, 5 days ago
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]
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Bailey Vincent started the topic Social Distancing Date Night: Sickness in the Movies in the forum Adults With Cystic Fibrosis 1 week, 6 days ago
As some of you might have seen already, the movie Contagion is suddenly trending on digital streaming services, despite being over 9 years old. A great many of us are studying up on pandemic-cinema, and there are so many sick movies to choose from that stretch far beyond the zombie-virus themed subtext.
This got me thinking: What do you…[Read more]
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Bailey Vincent posted a new activity comment 1 week, 6 days ago
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]
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Bailey Vincent posted a new activity comment 1 week, 6 days ago
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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Bailey Vincent posted a new activity comment 1 week, 6 days ago
Hey Tim! Like Jenny already said… welcome! We are here to help if you ever need anything, want to discuss anything, or have any problems. I look forward to knowing more about you and what connects you to CF, and hope you are well!
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Bailey Vincent posted a new activity comment 2 weeks, 3 days ago
I couldn’t love this post more. Thank you… yes! Here’s to crazy moms who love ferociously!!!
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Bailey Vincent started the topic Leaping For Science: Do The Risks Pay Off? in the forum CF Science and Research 2 weeks, 4 days ago
I wrote a column today that talks about “fringe science“. More specifically, it talks about more experimental procedures that aren’t yet covered by insurance, including stem cell therapy and phage therapy. I have heard positive things from many friends with CF, and had my own positive experience myself.
Still, sometimes when people suggest…[Read more]
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Bailey Vincent posted a new activity comment 2 weeks, 5 days ago
This is so so so so important to discuss, but so hard too. I 100% went back and forth at wanting to create a child with my partner, who is raising my daughters with me. My girls have begged for a little sibling throughout the years. Once my uterus was removed (I had a rectal and uterine prolapse, which is apparently pretty common in CF?), I had to…[Read more]
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Bailey Vincent posted a new activity comment 2 weeks, 5 days ago
Hey Diego. It’s so nice to meet you. As co-moderator of the forum- along with Jenny whom you’ve met- I’m here to help chat, support and facilitate whatever you might need. If you have any issues, just let us know. I look forward to learning more about you, your story, and your connection to CF!
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Bailey Vincent posted a new activity comment 2 weeks, 5 days ago
Hey Manda! So happy you registered! As Jenny already said, we are co-moderators of the forum and are here to help with anything that you might need (or want to discuss)! Just say the word and we are here to help
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Bailey Vincent posted a new activity comment 2 weeks, 5 days ago
This is such a relatable concern, but I also can’t even imagine your worry as a mother! Worrying about myself is much easier than worrying about someone that I love. Personally, I have flown using a mask for safety… wiping down most things that I touch… drinking tons of water… etc… But that IS of course much more difficult with a 6 month…[Read more]
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Bailey Vincent started the topic Let's Get Gross: Stuff We Don't Talk About in the forum Adults With Cystic Fibrosis 2 weeks, 5 days ago
Okay, this isn’t the most ideal topic of conversation but… Does anyone else wish they had someone to talk to about the “gross sides” of CF?
Obviously we know it comes with a lot of mucus and mayhem, but I am way too embarrassed most of the time to talk about some of the more insider things that happen.
For example, this week I sneezed,…[Read more]
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Bailey Vincent posted a new activity comment 2 weeks, 5 days ago
This is super interesting and good to know! I haven’t checked in with my clinic yet, but probably should. Although, in the case of phone calls, I wouldn’t be able to because of my hearing loss, so I wonder what ADA-compliant steps clinics might put in place, to make sure patients have access? FaceTime, email, etc. I’m curious and hopeful
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Bailey Vincent started the topic What Do You Wish Others Knew About CF? in the forum Adults With Cystic Fibrosis 3 weeks, 2 days ago
Today one of my colleagues asked the following question: “What do you wish people without Cystic Fibrosis knew about living with Cystic Fibrosis?”
I wish people know that not everyone has the exact same type of Cystic Fibrosis (those with variants or atypical types still exist). I wish people know it doesn’t just impact our lungs, like everyone…[Read more]
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Bailey Vincent posted a new activity comment 3 weeks, 2 days ago
I have not participated in a virtual event before, but would really love to try! Thank you so much for sharing! I wonder how Deaf friendly these are, overall? I am great at reading lips, so if cameras are clear and easy to see… I should be good? Do you have any tips for getting the most out of one of these events from your experience in the past?
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Thanks for bringing this to my attention! I wonder what, if any, accommodations the CF Foundation has available! I know there is a chat option during breakout sessions, where typed conversations take place during the video chats. But I truly don’t know accessible the event, as a whole, would be for someone who is deaf. But now I am certainly going…[Read more]