@bailey-vincent
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Bailey Vincent started the topic Help: I Am an Anti-Germaphobe Who's Becoming a Germaphobe in the forum Adults With Cystic Fibrosis 2 days, 13 hours ago
I have never been a “germaphobe”, despite our predisposition for infections and sickness. I always thought that stressing about what we can’t control only causes more stress. Sometimes I’m even a little negligent in caring because I don’t want to be ‘that person’ who’s always stressed about germs and her health, when the world spins on without me.…[Read more]
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Bailey Vincent posted a new activity comment 2 days, 13 hours ago
Yes, hey Carol! I will second Jenny in saying welcome to the forums, and we are here if you need us. We hope to post questions and content that provides good conversation, but if there is ever anything you want to discuss or would like us to broach… please just let us know! I look forward to getting to know you more
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Bailey Vincent started the topic Do You Let Kids Be Involved in Treatments? in the forum Adults With Cystic Fibrosis 3 days, 6 hours ago
I posted a video of my 10-year-old daughter and I preparing my home IVS on an ordinary day (mostly because I was trying to share her adorable words in the caption), and was wondering: How do you guys feel about this?
I used to hide everything from my kids in the past. Now, I just hide anything that might cause them distress (you’ll never catch me…[Read more]
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Bailey Vincent posted a new activity comment 3 days, 6 hours ago
So far, thankfully, no. I am actually not much of a fever girl… even when my blood cell counts are all out of whack (right now my platelets are apparently crazy-pants low?) I have no idea why, but almost everything hits my GI the wrong way
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Bailey Vincent posted a new activity comment 3 days, 6 hours ago
Hey Rebecca! Welcome to the forums. Jenny and I are your co-moderators here, and here to help you with whatever you need. Questions, comments, a shoulder to lean on… Just say the word!
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Bailey Vincent posted a new activity comment 3 days, 6 hours ago
YES! I am in a low-energy phase as well, and sometimes it’s even after I’ve checked blood sugars, eaten all the right things, etcetera. Maybe it’s because I am able to do the “right” things so inconsistently, that I’ve created a deficit for myself?
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Bailey Vincent posted a new activity comment 3 days, 6 hours ago
I would like to add to this Carly has clearly mastered the cat-eye in ways we never could
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Bailey Vincent posted a new activity comment 3 days, 6 hours ago
This is amazing! I am trying to gain 10 pounds in 2020 so trying to work my way there
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Bailey Vincent started the topic Do You Feel Better or Worse on IVs? in the forum Treatment routines, medicines, and the like 4 days, 13 hours ago
I’m going to be honest: I prefer IV Bactrim to oral Bactrim, even though neither are easy to tolerate for long periods of time. The latter does slightly more damage to my stomach than the former, and I often lose too much weight when I’m on it (from feeling ill).
I know some people feel worse on IVS before they feel better, but I normally feel…[Read more]
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I can’t do Bactrim in any form! I’ve developed a pretty severe allergy to it, but even before that, it caused such severe GI distress that I really hated it.
I’m someone who definitely feels worse on IVs before I start to feel better. The first 5-7 days of IVs are always really rough, and lately it’s been a flu-like ache that gets to me the…[Read more]
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So far, thankfully, no. I am actually not much of a fever girl… even when my blood cell counts are all out of whack (right now my platelets are apparently crazy-pants low?) I have no idea why, but almost everything hits my GI the wrong way
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Bailey Vincent posted a new activity comment 4 days, 13 hours ago
Lol. Thank you sir!… I will take that… to heart.
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Bailey Vincent posted a new activity comment 4 days, 13 hours ago
I 100% do the same thing. I don’t regularly go to the OBGYN, eye doctor, or anywhere else unless something is “wrong”. For me, some of these aren’t covered by insurance. For example, I super need to get glasses for my eyes while driving, but I know I can’t afford the exam and prescription currently. But others – like the dentist- I avoid until…[Read more]
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Bailey Vincent posted a new activity comment 4 days, 13 hours ago
I read this quickly and was about to be like “Oh my gosh yes! So much yes!” and then realized who it was about. Haha. But still… Yes?
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Bailey Vincent started the topic Does CF Representation in the Media Matter To You? in the forum Adults With Cystic Fibrosis 5 days, 13 hours ago
QUESTION: How much does representation really matter?
I shared a little bit about not wanting to be the “token” in any given situation on Instagram not long ago, and I still have thoughts about what this really means. Whether the token deaf person, or the token sick person, or anything else. Although I fear tokenism in my profession, I often for…[Read more]
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Bailey Vincent replied to the topic Has anyone been diagnosed as an adult carrier? in the forum Diagnosis Information and General Questions 5 days, 14 hours ago
William, wow, what a pickle you’re in. I am so sorry you’re dealing with this. I know that so many people struggle in the healthcare system for years trying to find answers, and that the feeling of “knowing something is wrong” when no one will listen is truly so scarring.
Although I am not a physician nor an expert, I can say that working with a…[Read more]
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Bailey Vincent posted a new activity comment 5 days, 14 hours ago
Hey Alice! My name is Bailey Anne Vincent and I am one of the forum moderators, in addition to my friend Jenny Livingston who you’ll soon meet. We both live, mother, and moderate amid illness, and are here to help anyone who’s impacted or may have questions, comments or concerns. We try to make this feel as much a friendly space as possible, and…[Read more]
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Bailey Vincent posted a new activity comment 5 days, 14 hours ago
Hey Nikki. Welcome to the forums! I am one of the moderators, along with the amazing Jenny Livingston, and you’ll see the two of us “around town” posting different topics and starting conversations. If ever you want or need to talk about anything, we are here. Please just reach out any time! Excited to get to know you and talk more
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Bailey Vincent posted a new activity comment 6 days, 11 hours ago
This is amazing. I could read this post again and again. Do you ever feel that you keep looking for positive posts like these, because they’re so rare to us? They feel like these amazing moments to be savored. Wow
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Bailey Vincent posted a new activity comment 6 days, 11 hours ago
Yes, hey Julie! I’m late to the party, but so happy to welcome you along with Jenny. I am 33 (it’s apparently the 30s club around here?) and actually just got out of a hospital admission, so- as you can see- Jenny and I truly try to mix living with this illness with supporting those impacted by it online at the same time. If you ever need someone…[Read more]
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Thank you. I hope you’re feeling better.
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Bailey Vincent posted a new activity comment 6 days, 11 hours ago
Oh let’s UNPACK. I love that you talked about this. I personally have struggled with my own self identity when it comes to letting loose and having adult, appropriate fun, because my liver is not the healthiest and I don’t ever want to add to its burden. In the rare, rare occasions I enjoy a glass of wine with my friends (normally once every three…[Read more]
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Bailey Vincent posted a new activity comment 6 days, 11 hours ago
Hey Brittney. My name is Bailey, and Jenny and I are co-moderators on this forum. We aim to support, engage and encourage you however you need, on whatever topics you need. Talking can be healing, so if ever you need someone to talk to (or to post a topic that you really wish could be covered), please just let us know! Take care and look forward…[Read more]
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Ooh, this is a topic that I’m incredibly interested in! I always wonder how other parents approach these things. As you know, I also have a 10-year-old daughter. She has always been involved with my care. As a toddler, she’d squeeze my nebulized medications from the vial into my neb cup. As she got a bit older, she really enjoyed watching me…[Read more]