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Bailey Vincent started the topic My New Boundary Goals: What Are Yours? in the forum Adults With Cystic Fibrosis 1 day, 2 hours ago
Yesterday I talked a bit about wanting to set boundaries for myself going into this new year, and today I wanted to expand upon what I’m aiming to do.
Currently, I have decided to try the following, in order to (hopefully) prevent as much crash-and-burn and sickness:
1. Be completely off my phone by 9 PM every night, even if that’s technically…[Read more]
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Bailey Vincent started the topic Boundaries For Your Body in the forum Adults With Cystic Fibrosis 2 days, 6 hours ago
I don’t do New Years Resolutions (it’s mid January and it’s the first time I’ve mentioned the word, so maybe that’s obvious), and I don’t like to add more To Dos to my list when I’m already a little stressed (see also: yesterday’s post), but… Then this weekend happened.
After a meltdown-city type of week, I kept tossing around my sister’s…[Read more]
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Bailey Vincent started the topic My Personality Is My Worst Symptom in the forum Adults With Cystic Fibrosis 2 days, 23 hours ago
Medicine is exhausting and confusing for all of us, but sometimes I wonder if my personality makes it a little harder on myself.
Let me paint a picture. Last week I saw my orthopedist who said we need to repeat the CT mylogram again (similar to a spinal tap), to make sure my recent rise in upper back pain is not structural – which he does not…[Read more]
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Bailey Vincent started the topic Guilt: The Worst Symptom Around in the forum Coronavirus (COVID-19) and CF 6 days, 5 hours ago
I posted at the beginning of the week about my back issues and got some really kind replies (our friend John Schroeder said: ” I hope your dics find a solution for you”, which means a lot), but I keep feeling torn on “what to do”.
I hear conflicting concepts constantly. “Do physical therapy. Movement and muscle strength will help” (which I…[Read more]
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Bailey Vincent posted a new activity comment 6 days, 5 hours ago
Hey Paul, yeah I was definitely joking on the Bacon theory when I wrote this! haha. Thanks for explaining to everyone else incase they were like: “What is she talking about?” Appreciate it
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Bailey Vincent posted a new activity comment 6 days, 21 hours ago
Paul, I cannot thank you enough for writing and sharing all of this. I read every word and loved imagining your home (oh how I want to change countries!) and life, but I also felt like the following sentence is the mantra we all need right now:
“The vaccine might improve things in the long run. It will however not change our present lifestyle for…[Read more]
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Bailey Vincent posted a new activity comment 6 days, 21 hours ago
Hey Bill! Thank you for joining us! As my co moderator Jenny already said, we both work here on the forum: posting topics, lending support, and striving to be a listening ear/eye should you need it. If you need anything at all in the future, please don’t hesitate to reach out!
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Bailey Vincent posted a new activity comment 6 days, 21 hours ago
So I’ll answer you in unnecessary detail. Storytime! Ready? (haha)
I am the baby of 5 kids and I am the only one with CF (although mine, like some friends on this forum, was diagnosed later in life and is considered atypical, or CFRD). All 4 of my older siblings are healthy, although my Dad has always had heart problems, hearing loss and…[Read more]
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Bailey Vincent started the topic Can Our Country Hurt Our Health? in the forum Adults With Cystic Fibrosis 1 week ago
I know we all live in different parts of the globe right now, but since I live in America and our nation has had a state-of-crisis these last couple of weeks… it feels sort of weird to be posting and not acknowledging what’s been going on.
As I watched some of the recent violence and turmoil play out (which impacted my family directly since my…[Read more]
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Bailey Vincent started the topic Is Your Life Still Changing For the Virus? in the forum Coronavirus (COVID-19) and CF 1 week, 1 day ago
Yesterday I posted a bit about virus cases in my area, and how rapidly they’re increasing in proximity and relation by the week, but I also had to ask:
Do you change your habits based on an uptick in cases?
For example, right now the numbers are higher than ever (certainly higher than they were when my region initially shut down months ago), yet…[Read more]
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Bailey Vincent posted a new activity comment 1 week, 2 days ago
Thank you so very much! This really means a lot! I hate that it keeps “stopping” me because I know physical therapy and strength can help, but then I also know time to heal can help, you know? Sometimes I feel like: “Which do I do?” lol
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Bailey Vincent started the topic Six Degrees of COVID: How Separate Are You? in the forum Coronavirus (COVID-19) and CF 1 week, 2 days ago
Here’s an uncomfortable question:
How are COVID cases in your area?
I ask this because I keep saying, “I feel like the six degrees of COVID separation are less and less” more and more. Lately, I see more and more people in my community posting about positive ’19 tests, and increasing symptoms.
At the start of this pandemic, it felt a little…[Read more]
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Bailey Vincent started the topic Do You Get Medically Superstitious? in the forum Adults With Cystic Fibrosis 1 week, 3 days ago
Hello CF Squad! I have missed you so! Even though our amazing Jenny has been manning the forums the last couple of days post holiday break, I’ve been a few days behind her in return, mostly due to the fact that I “blew out” my back while brushing my teeth.
Yes, while brushing my teeth. I was in the bathroom on an ordinary evening, about to return…[Read more]
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Bailey Vincent posted a new activity comment 1 month ago
YES. Wow. This post almost made me cry (to be honest) because I am definitely feeling “unremarkable” right now and like easy answers aren’t quick enough. And often, with further digging, we find whatever the cause is… but it takes SO much effort to get there. So lately I’ve been thinking: “Why did I even complain? Why didn’t I just hide at home…[Read more]
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Bailey Vincent posted a new activity comment 1 month ago
haha. This killed me. I cannot stop laughing, lol
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Bailey Vincent posted a new activity comment 1 month ago
Tim- like Paul said and I think like I’ve said before… CF patients should definitely be given consideration and support for their hearts! I so agree! And I don’t know why we aren’t?
I am a heart patient and have an ICD and am on a diligent amount of heart medications. I really had some scary moments in the ICU before we figured out what was up…[Read more]
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Bailey Vincent posted a new activity comment 1 month ago
I definitely needed this reminder!
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Bailey Vincent started the topic Loved Ones: What Do You Wish For Them? in the forum Friends and Family of people with Cystic Fibrosis 1 month ago
I was posting a lot about predictions heading into a new year, with the holidays fast approaching, and I started thinking about partners or caretakers.
If you had to wish for ONE THING for your loved one next year, what would it be?
If you are a caretaker or loved one, what would you wish for the person you love who is the patient? What about…[Read more]
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Bailey Vincent started the topic Predicting the Future: January and COVID? in the forum Coronavirus (COVID-19) and CF 1 month ago
As I prepare and scramble for “time off” over the holiday, I find myself wondering how much of life will jumpstart again in January.
I have a lot of projects on the horizon but keep wondering… How do I predict what’s to come in the pandemic, and how do I not take on too much too fast?
I worry that “best set plans” for January will crumble if…[Read more]
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Bailey Vincent posted a new activity comment 1 month ago
I absolutely love your word (and those of everyone commenting). Wow… it’s hard to find one when yours fits so well, Jenny!
Hmm… I guess I’d say: Savor.
Not fancy. There are better words out there. But… it just feels right?
Being forced to slow down this year and not be traveling for work and rushing around as in previous seasons has…[Read more]
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