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Staying Salty
Приєднався 25 лип 2016
Six different people with Cystic Fibrosis coming together to talk, inform, help, and educate about their lives and experiences with CF.
ILLNESSES BEYOND CF| Chad Riedy
Check out some other videos!
Research in the CF World: ua-cam.com/video/iv-BQacSyw8/v-deo.html
Spirituality and CF : ua-cam.com/video/VGsayD_tjso/v-deo.html
This is Me: ua-cam.com/video/RnsF4gUtO9/v-deo.html
Staying Salty Social Media Accounts:
Facebook: stayingsalty
Twitter: seven_salty
Instagram: StayingSalty65
My Social Media Accounts:
Twitter: cjriedy
Instagram: cjriedy
(music by Charles Michael Duke- aka Charlie Barrington)
www.youtube.com/watch?v=4MaEF...
Research in the CF World: ua-cam.com/video/iv-BQacSyw8/v-deo.html
Spirituality and CF : ua-cam.com/video/VGsayD_tjso/v-deo.html
This is Me: ua-cam.com/video/RnsF4gUtO9/v-deo.html
Staying Salty Social Media Accounts:
Facebook: stayingsalty
Twitter: seven_salty
Instagram: StayingSalty65
My Social Media Accounts:
Twitter: cjriedy
Instagram: cjriedy
(music by Charles Michael Duke- aka Charlie Barrington)
www.youtube.com/watch?v=4MaEF...
Переглядів: 212
Відео
CF BELLY | Tara Bourque
Переглядів 6585 років тому
↓↓ FOLLOW US! ↓↓ Staying Salty Social Media Pages: FACEBOOK: stayingsalty/ INSTAGRAM: stayingsalt... TWITTER: seven_salty ↓↓ FOR MORE FROM TARA ↓↓ Follow her other accounts: Instagram: tbrq Twitter: tarrabrq Facebook: AliveWithEve... Email: tmbourque4@gmail.com
CF BELLY | Chelsea Spruance
Переглядів 7555 років тому
↓↓ Watch more videos by Chelsea!! ↓↓ My last video (CF research ) → ua-cam.com/video/D_bKeVdB1P0/v-deo.html OTHER RELATED VIDEOS What I eat in a day → ua-cam.com/video/GwMBhuHr7dM/v-deo.html Scars and body acceptance → ua-cam.com/video/NFJdKJYdOb8/v-deo.html Your care team and YOU → ua-cam.com/video/rZFmnxLA1x4/v-deo.html ↓↓ FOLLOW US! ↓↓ Staying Salty Social Media Pages: FACEBOOK: facebook.com...
CF BELLY | Ashley Wilson
Переглядів 2695 років тому
FOLLOW US: Facebook Page: Staying Salty Instagram: @StayingSalty65 Twitter: @Seven_Salty FOLLOW ASHLEY: UA-cam: ua-cam.com/users/AshleysRoses Instagram: ashleys.roses Twitter: ashleysroses16 Blog: ashleysroseythoughts.blogspot.com CREDITS: Music Used: Intro Music: ♡I’ve Got Cystic Fibrosis by Charles Michael Duke itunes.apple.com/us/album/ive-got-cystic-fibrosis/10843...
CF BELLY | Chad Riedy
Переглядів 2445 років тому
Time to talk about the CF Belly and how we handle the bloating, gas and aches and pains. Check out some other videos! Research in the CF World: ua-cam.com/video/iv-BQacSyw8/v-deo.html Spirituality and CF : ua-cam.com/video/VGsayD_tjso/v-deo.html This is Me: ua-cam.com/video/RnsF4gUtO9/v-deo.html Staying Salty Social Media Accounts: Facebook: stayingsalty Twitter: seven_...
CF BELLY | MirandaLynn
Переглядів 4525 років тому
bereadytovote.org vote411.org lwv.org MY SOCIAL MEDIA ACCOUNTS INSTAGRAM - mirandaporche TWITTER - mirandaporche FACEBOOK - Miranda.porche BLOG - www.Mirandaporche.com STAYING SALTY SOCIAL MEDIA ACCOUNTS FACEBOOK: stayingsalty... TWITTER: seven_salty INSATAGRAM: StayingSalt... UA-cam:ua-cam.com/channels/uh_PEl6HUgGz5ii...
DAY IN THE LIFE | Tara Bourque
Переглядів 5525 років тому
↓↓ FOLLOW US! ↓↓ Staying Salty Social Media Pages: FACEBOOK: stayingsalty/ INSTAGRAM: stayingsalt... TWITTER: seven_salty ↓↓ FOR MORE FROM TARA ↓↓ Follow her other accounts: Instagram: tbrq Twitter: tarrabrq Facebook: AliveWithEve... Email: tmbourque4@gmail.com
DAY IN THE LIFE | Ashley Wilson
Переглядів 2735 років тому
FOLLOW US: Facebook Page: Staying Salty Instagram: @StayingSalty65 Twitter: @Seven_Salty FOLLOW ASHLEY: UA-cam: ua-cam.com/users/AshleysRoses Instagram: ashleys.roses Twitter: ashleysroses16 Blog: ashleysroseythoughts.blogspot.com CREDITS: Music Used: Intro Music: ♡I’ve Got Cystic Fibrosis by Charles Michael Duke itunes.apple.com/us/album/ive-got-cystic-fibrosis/10843...
DAY IN THE LIFE | Chad Riedy
Переглядів 1045 років тому
Chad and the boys head to Nats Park for a little baseball experience! Research in the CF World: ua-cam.com/video/iv-BQacSyw8/v-deo.html Spirituality and CF : ua-cam.com/video/VGsayD_tjso/v-deo.html This is Me: ua-cam.com/video/RnsF4gUtO9g/v-deo.html Follow Us: Staying Salty Social Media Accounts: Facebook: stayingsalty Twitter: seven_salty Instagram: Stayi...
Research In The CF World | Tara Bourque
Переглядів 1465 років тому
↓↓ FOLLOW US! ↓↓ Staying Salty Social Media Pages: FACEBOOK: stayingsalty/ INSTAGRAM: stayingsalt... TWITTER: seven_salty ↓↓ FOR MORE FROM TARA ↓↓ Follow her other accounts: Instagram: tbrq Twitter: tarrabrq Facebook: AliveWithEve... Email: tmbourque4@gmail.com
RESEARCH IN THE CF WORLD | Chelsea Spruance
Переглядів 4405 років тому
↓↓ Watch more videos by Chelsea!! ↓↓ My last video (Hardships in school with CF) → ua-cam.com/video/L_UOhrvcW78/v-deo.html OTHER RELATED VIDEOS Orkambi and beyond → ua-cam.com/video/lhQM7n23Lfw/v-deo.html Ports vs PICCs → ua-cam.com/video/zDxZuNQwc-0/v-deo.html Your care team and YOU → ua-cam.com/video/rZFmnxLA1x4/v-deo.html ↓↓ FOLLOW US! ↓↓ Staying Salty Social Media Pages: FACEBOOK: facebook....
CLINICAL TRIALS | Ashley Wilson
Переглядів 845 років тому
FOLLOW US: Facebook Page: Staying Salty Instagram: @StayingSalty65 Twitter: @Seven_Salty FOLLOW ASHLEY: UA-cam: ua-cam.com/users/AshleysRoses Instagram: ashleys.roses Twitter: ashleysroses16 Blog: ashleysroseythoughts.blogspot.com CREDITS: Intro Music: ♡I’ve Got Cystic Fibrosis by Charles Michael Duke itunes.apple.com/us/album/ive-got-cystic-fibrosis/1084327380?i=1084...
Research in the CF World | Chad Riedy
Переглядів 795 років тому
This week we are chatting about the importance of participating in research studies and clinical trials and our experiences with them. Spirituality and CF : ua-cam.com/video/VGsayD_tjso/v-deo.html Living Near Others with CF: ua-cam.com/video/zbDtNxIFF9c/v-deo.html This is Me: ua-cam.com/video/RnsF4gUtO9g/v-deo.html Follow Us: Staying Salty Social Media Accounts: Facebook: stayingsa...
HARDSHIPS IN SCHOOL WITH CF | Chelsea Spruance
Переглядів 2925 років тому
HARDSHIPS IN SCHOOL WITH CF | Chelsea Spruance
School Hardships with CF | Chad Riedy
Переглядів 1015 років тому
School Hardships with CF | Chad Riedy
NOT THE TYPICAL CF PATIENT | Erin Mahaney
Переглядів 3426 років тому
NOT THE TYPICAL CF PATIENT | Erin Mahaney
How are things going now?? 2023 . ..
Dear so pretty 😍 please spit that mucus which stuck in your lungs while you cough cough toy by taking a deep breath from your nose dear
Whoop whoop spread the word guys !!! I wish everyone knew about CF and the issues it brings. Idiots who say these things are either dumb or uneducated. I lost some of my close friends in around 1995 from CF in Australia. So happy TRIKAFTA has just been approved here. Wonderful news. I am a PROUD organ donor and have encouraged those near to me be the same !!!
I have CF too, for the last 2+ years now I've been a much healthier weight( debatably for the right reasons) but, now I have MASSIVE bloated, distension-esque stomach area. If I suck it in to attempt to look 'normal' I can barely breath.
What is her channel
The issue is when CFers don't have any medical ensurance issues. These ensurances pay for EVERYTHING for these people! A patient who is on a ventilator, and who has a trach, cant get vital stuff that they need because they have so many restrictions thanks to the CFers. A ventilator patient who has thick secretions and gets horrible mucous plugs can't get a vital medication that would actually help them. Why? Why do patients who have horrible mucous plugs and who has a tracheostomy can actually die from these plugs. They can't get a medication that would help thin the patient's mucous they cannot get this drug, because only the CFers get it. I get that CFers are sick. OK, I get it. But you don't see CFers with tracheostomy tubes, who are on a ventilator. These patients don't need a ventilator. Not only that, getting a VESt for a patient who is unable to cough well, who has a trach and a ventilator is nearly impossible. WHY??? Because it's restricted to the CFers!! I'm probably losing my vest which has helped me so much, because medicare and medicaid is refusing to pay for the thing, thanks to the restriction to YOU GUESSED IT!!! THE CFERS!!! Another thing? That vest has over 1000 hours, which prooves that I'm using it, however HILL-ROM is going to come and take my vest, because I don't have a diagnosis of CF. Another thing I notice? CFers are always griping and crying about how it's so hard. OK, Grow up and live with it. You have CF. You gotta do your treatments, and you gotta take your treatments. Be thankful that your ensurance is covering all that equipment. Cause they're probably taking my vest since I am not a CFer!!! Yet let's get thi straight. I have a trach, and am on a ventilator. What next Are they going to restrict ventilators to home patients and say that they'll only cover them for CFers? They do that? Us ventilator patients are DEAD!
I deliberately wanna love a girl with cystic fibrosis in America, if I could.
As much as I appreciate what I assume is a well-intended sentiment, this comment gives off some major sexist-abelist "I wanna love/take care of a dying girl" vibes. 🧐
@@AHealthyHanThanks for rplying me.🙂🙂 looking forward for ur new video.
Hey umm a question Is it hard to marry cystic fibrosis?
Hey ur healthy haley lu richardson to me🙂🙂 for me u two look familiar. Just like ur utube name ur healthy than haley.
Peace✌✌🙃🙃
Don’t know if you know this, but you can also do a port in the inside of the arm. Not all doctors do it, it’s a bit less common, but a good option. The port itself is smaller than the one in the chest, and it’s more durable than a PICC.
I hate that people always ask "since when do u have it?" After I explain that you're born with it!!!!!
Thank you so much for this! I’ve been trying to find something to really work on my inner chest muscles. This was amazing. Loved following along!
I don't have CF I have CFTR dysfunction which is kinda similar. My friends always compliment me for being so slim but to be honest I'd rather be heavier...thanks for the tips ;)
Thank you so much!!!!♥️♥️♥️♥️♥️
So pretty much, I have a lot of symptoms of Cf, I would tell my mom but I'm scared she won't believe me, can you give me some tips please. Because, I don't want them to get worst, and I once even sneezed and out my mouth we, is yellow, thick, sticky mucus. That's the type of mucus CFers have. Once again, can you give me some tips please.
Your just faking it a persona said it to me and I’m like not to be rude but not all need tubes or have to stay at the hospital it hurt my feelings so I told them to maybe look it up more
Sorry, can't hear.
Same, there’s so many cases yet it’s rare to find other people with it. I’m 18 in 4 months and I’ve been diagnosed since I was born and my sisters 24 and she’s also been diagnosed since birth.
I'm struggling because I'm in a living situation where gaining weight isn't possible, even with my Gtube. I'm 82lbs and it scares me. And I know people in these comments probably don't care, but I don't have anyone to talk to about my CF problems.
I know this is a "what not to say to a cfer" but....i pissed off
Thank u so much for talking about the beginning bc that's the most important. We all wanna be big or huge but as we all know the road to it is very hard but we need to know that we can get there by just starting. Again thank u so much.
God I love new Orleans
What is this channel?? I have cf and just curious why there is someone new in each video
i always write that on get to know me papers!!!
i really love this channel😭 i am a 16 years old cf patient and it is very relatable and very helpful. thank you so much!!😭😭
One of the nice things about women with CF is they have lovely voices. Good luck with everything and thanks for the information regarding your diagnosis.
Hi Chelsea, my daughter and I just did some yoga with you, we sure would like to see more videos, maybe in front of the ocean 🏝🌅
Thanks guys for making this video, I had to recently explain the situation to my husband about why my stomach is so extended all the time why and why it looks like that you know he's not too sure everything about CF just yet we've been married for 7 years but I was only diagnosed at 15 years old so you know it's pretty hard but I had to show him this video so maybe you could understand it better because now I'm 30 years old in March 6th 2019 is when I will officially be 30 years old. So I hadn't watch this video to explain the cystic fibrosis got and what it's all about and why we haven't and it's just a thing we all have this is the fibrosis family has
yuygi
Thank you Miranda. You are so well spoken and openhearted and it is very helpful to listen to your videos. <3
good luck in your new adventures bro!
They tested me by a sweat test
I was also born in 89. I was diagnosed at 15
Same things i did too + Ginger tea 😉 xx
Do you have dysautonomia?
Yeah Tara I know the feeling of having a feeding tube as well but I had it Taken out about year ago, left another small hole, my second belly button. Lol
Wow, you are a very intelligent young woman , thank you for sharing with us.
For me those exact same things are working. No dairy, no meat, very little gluten, no processed foods and yoga. I would like to add drinking enough water every day to prevent DIOS. I am so happy that a lot of cfers are focusing on diet these days, I think it is essential to our wellbeing. We do not have to live with these issues, there are ways to improve the belly situation! Great video, lots of love from germany!
If you haven’t been able to get your lung function back. Try exercising while doing treatments. My lung function nearly doubled.
I had a blockage as well
Hi Chelsea yess I have the same belly issues effecting my lungs and gi.Im 29 nd have CF
Hi brandi, yes we spoke on facebook the other day :) thanks for watching! -Chelsea
@@StayingSalty yes I know exactly what it's like to have those gi issues. I had a blockage and had a foot of my bowel removed as well as many other surgeries. But I'm a warrior just like you guys are and we are gonna be here for a long Time.
When I drink Ensure it makes me hv gas, but I guess most milk does. Lol
I love this channel.
For me it’s pizza or anything with tomato sauce...And I def need extra enzymes with pizza and anything with a lot of cheese...What helps me is warm peppermint tea ☕️
It's very common I also have that issue
The enzymes brake down the fat and stop
CF hero. I'm on a trial as well
I am 29 with cf
Congrats
I totally understand the GI issues, I'm the same way.
Great to find others with CF. I'm 29 years old diagnosed at 15 had it since birth.
Brandi, glad you found our channel. Congrats on 29, I'm 37 and was diagnosed at age 3. Please, always feel free to reach out at any time with any questions, thoughts or topics you would like to see! -- Chad
@@StayingSalty yeah i been actually trying to find someone older then me with cf and I'm so happy to see how far we are getting. It's makes me feel more encouraged
@@StayingSalty I just started my own channel Cystic Fibrosis Warriors
This is great news! Way to go on getting out there and spreading awareness! We will have to check it out! We certainly have come a long way from the days of not living past childhood - Chad
Oh man! One of the most JERK things I have EVER said was to a very dear CF Friend of mine, asking her if she was pregnant (after YEARS of trying) only to have the response, "No, it's just CF belly." I seriously had a major 'I'm an A-Hole cry about it with my husband later... I think I cried like 3 times about how inconsiderate I was. Made me so sad. @sabrinawalker
Yo i totally agree with all of this. I think the degree on how sick you are at the moment has a lot to do with it. For me it also has to do with certain foods like diary products or things like soda, or certain fasts foods and such. Usually when im really bloated or just big in the belly, I like to drink some hot tea.