65roses instagram photo

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Salty Cysters

Salty Cysters

  • 24.05.2018 17:59
  • 1

"Hope is often a powerful force empowering those who live with incurable diseases. In the final video for #CFAwarenessMonth, @esiason17g shares his hopes for the future, a cystic fibrosis cure, and being able to breathe normally" - @boomeresiasonfoundation — We couldn't have said this better ourselves!!! We love you Gunnar!! Thank you for all you do for every single person fighting CF & for the CF community as a whole!! — ❌⭕️❌⭕️Lea & Tiff — #cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cffighter #cfirl #cfawareness  #cfstruggles #breathe #doublelungtransplant #chronicillness #lungs #cfsucks #cysticfibrosisawareness #findacure #cflife #65roses #curecf #organdonation #raredisease

Lu's Flower Decor Rose Heart Shadow Box made in memory of Jamie Marie, a young girl who

Lu's Flower Decor

  • 24.05.2018 17:46
  • 4

Rose Heart Shadow Box made in memory of Jamie Marie, a young girl who fought long and hard with Cystic Fibrosis. 💜 . 65 Roses, a significant term for people affected with Cystic Fibrosis. If you say "65 Roses" out loud, it sounds like Cystic Fibrosis. Many, many years ago, a young boy heard his mother on the phone talking about Cystic Fibrosis, but to his understanding, mom was asking for 65 Roses. Since, the term has touched the lives of many of us, and it's actually one of the Beautiful things we hold on too through this journey. . . . #lusflowerdecor #paperflowers #cysticfibrosis #65roses #handmadepaperflowers #weddingbouquet #babyshowerdecor #flowerbackdrop #paperflowerbackdrop #silhouettecameo #silhouetterocks #madewithmichaels #makeitwithmichaels #classroomdecor #centerpieces #nurserydecor #babyshower #dfwartist #dfw #weddingdecor #caketopper #bridalshowerdecor #quinceañeradecor #sweetfifteen #roomdecor #homedecor #birthdaypartydecor #shopsmall #supportsmallbusiness

Caleigh Sarah Haber Transformation Thursday?! 🤷🏻‍♀️ • It’s not about perfe

Caleigh Sarah Haber

UCLA

  • 24.05.2018 17:42
  • 5

Transformation Thursday?! 🤷🏻‍♀️ • It’s not about perfect. It’s about effort. And when you bring that effort every single day, that’s where transformation happens. That’s how change occurs. || Transformed “Michael’s room” into this morning’s work space for Bryan. I love looking over my right shoulder and feeling his love radiate through me. I fight for our today and I fight for our tomorrow 💜! Thank you for being flexible and adapting in every situation - a true sign of a cf/transplant spouse! #fight2breathe #cysticfibrosis #65roses #curecf #cfawareness #unos #organdonation #donatelife #recycleyourself #unos #organdonation #donatelife #recycleyourself #doublelungtransplant #lobartransplant #workspace #werk #husband #marriage #ucla #uclahealth #hospital #medicine #health #morningmotivation #losangeles

65 Roses Craft Shop I love to see my stuff in other peoples houses! 🏡.....#65rose

65 Roses Craft Shop

  • 24.05.2018 17:18
  • 0

I love to see my stuff in other peoples houses! 🏡 . . . . . #65roses #craftshop #reversecanvas #diy #diyreversecanvas #diysign #bathroomsign #diybathroom #diyhome #makeeverything #makesomething #shoplocal #curecysticfibrosis #Cfmom

✨R E B E C C A R O B E R TS ✨ Morning Pug snuggles .......#health #healthcoach #photography #

✨R E B E C C A R O B E R TS ✨

  • 24.05.2018 17:10
  • 1

Morning Pug snuggles . . . . . . . #health #healthcoach #photography #mom #momlife #motherhood #parenting #art #artist #writer #cysticfibrosis #65roses #fitness #fitfam #fitmom #housewife #homemaker #food #foodie #family #fashion #cutekids #california #montereybay #cook #travel #jesus #rheumatoidarthritis #rodanandfields

When Every Breath Counts Life has its ups and downs. In case you don't know what you're looking

When Every Breath Counts

  • 24.05.2018 17:05
  • 0

Life has its ups and downs. In case you don't know what you're looking at, let me explain. The left of the graph is my Spiro/Lung function in 2010, while the other end is earlier this week. Every down is each time I've been sick, and every up is when I've recovered (usually after a hospital admission for IVs, Steroids etc). The percentages in the table are the measurements of comparison where 100% would be a normal person of my age, weight and height. #chronicillness #cysticfibrosis #copd #bronchiectasis #diabetes #arthritis #gord #ibs #spoonie #justbreathe #65roses #insulin #neblife #hospitallife #positivity #goodvibes #lifebalance #healthy

65 Roses @moxiefitnessequipment supports #65Roses and will be building one of t

65 Roses

  • 24.05.2018 16:22
  • 2

@moxiefitnessequipment supports #65Roses and will be building one of their awesome rigs onsite for our outside workout! Check them out to fit your gym or garage! THANKYOU #moxiefitnessequipment 🙌🏽 . #Crossfit #Crossfitrig #Crossfit4CysticFibrosis #CF4CF #CysticFibrosis

Dixie Harper On Sunday, June 3rd, I will be walking in memory of my best friend, Le

Dixie Harper

Queens, New York

  • 24.05.2018 16:08
  • 0

On Sunday, June 3rd, I will be walking in memory of my best friend, Lee Dietrich-Schaefer, whose battle with Cystic Fibrosis ended in 2003. CF is a devastating disease, and while great progress has been made in available treatments to improve and extend the lives of people with CF, there is more work to be done. If you'd like to be a part of the ongoing search for a cure, please support me by donating at the link in my bio. #greatstrides #cysticfibrosis #cffgreatstrides #addingtomorrows #whyistride4cf #cfawareness #65roses

Kaila Maartensz A common misconception about Cystic Fibrosis is that a lung transplant

Kaila Maartensz

  • 24.05.2018 15:41
  • 3

A common misconception about Cystic Fibrosis is that a lung transplant is a cure. A transplant is an incredible gift but it is far from a cure. After my transplant I no longer needed nebulisers or physio, but I did need many more tablets. The tablets are immunosuppressants - they suppress my immune system so that my body doesn’t realise my lungs are a foreign object and try to reject them. This means I’m even more susceptible to getting sick than I was before. There is also the constant fear of rejection. That is the word you never want to hear when you’ve had a transplant of any kind. My beautiful friend Nicky had her transplant a few years before mine. She did get sick, then her body rejected her lungs. The day I was called into ICU to say goodbye to Nicky was one of the worst of my life. Tomorrow is 65 Roses Day. If you see anyone selling roses PLEASE buy one. We need a cure for this disease, because even after a transplant it is still killing people I love. #fucf

Lady Blaze 🔥 Day 25 #65roses challenge was yapping to my bestie in Scotland for 65

Lady Blaze 🔥

  • 24.05.2018 15:12
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Day 25 #65roses challenge was yapping to my bestie in Scotland for 65 minutes this morning. The perfect way to start the day 🧡🌹 #65roses #65roseschallenge #65rosesforcysticfibrosis #cfawareness #cysticfibrosisaustralia #cysticfibrosisawareness #cysticfibrosisfundraiser #cysticfibrosissouthaustralia #cysticfibrosisawarenessmonth #farapartbutcloseatheart #besties #love #blethers

Gunnar Esiason Hope breeds success!!!💪🏻💪🏻💪🏻#Repost @boomeresiason

Gunnar Esiason

  • 24.05.2018 14:05
  • 8

Hope breeds success!!! 💪🏻💪🏻💪🏻 #Repost @boomeresiasonfoundation with @get_repost ・・・ Hope is often a powerful force empowering those who live with incurable diseases. In the final video for #CFAwarenessMonth, @esiason17g shares his hopes for the future, a cystic fibrosis cure, and being able to breathe normally. Watch! . . . #cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cffighter #cfirl #cfawareness  #cfstruggles #breathe #doublelungtransplant #chronicillness #lungs #cfsucks #cysticfibrosisawareness #findacure #cflife #65roses #curecf #organdonation #raredisease #cysticfibrosisawarenessmonth

Niki Every year since 2013 team Purple for Paxton has participated in Great

Niki

  • 24.05.2018 14:02
  • 1

Every year since 2013 team Purple for Paxton has participated in Great Strides. Almost every CF drug was created using funds raised from Great Strides. The Cystic Fibrosis Foundation leads the way in research for drug development, promoting high quality health care, and just helping people with CF live better lives. The Cystic Fibrosis Foundation does not receive any Federal Funding for this research. Pax has a pretty big support system that comes out for her every year. It's pretty humbling to see the love and support she gets every year. She inspires people to be better, she's changed people for the better, she's a hero to a lot of these people. They've all become part of our Purple for Paxton and honestly there's no greater feeling than that. 💜💜 #purpleforpaxton #cfwarrior #supertubie #ibdfighter #ibd #ulcerativecolitis #cysticfibrosis #cysticfibrosisawareness #cfawareness #cfsucks #curecf #65roses #justbreathe #saltygirl #greatstrides #fucf #day24 #cfspamallmonth

Lauren Kingston What most of you don’t know is that Matt and I nearly pulled the pin

Lauren Kingston

  • 24.05.2018 13:12
  • 2

What most of you don’t know is that Matt and I nearly pulled the pin halfway through our honeymoon in USA & Canada. We both got quite ill with bronchitis and with Matt having Cystic Fibrosis this is a very serious matter. With no travel insurance company really wanting to go near us with a pre existing medical condition and us not having access to meds with proper finances out of our own country; we were blessed to come across with welcoming arms from CF clinic in Calgary. They took us in and helped us out with consultation, tests and medications out of their own time and goodness of their own hearts. We didn’t have to pull anything out of our pockets, they managed to help us enough to get us through the rest of our trip. Now that we’re back home unfortunately matt has to be admitted in for tests and quite a intense tune up for the infection of the lungs. There is no break from Cystic Fibrosis - even for those in immediate family of those who have CF. #cysticfibrosis #cfcc #65roses #cysticfibrosisawareness #advocate #canada #calgarycfclinic #calgary #poweron #percussions #physio #liver #lungs #pancreas #saltyskin #stickycells #malnutrition #portalhypertension #monashmedicalcentre #cysticfibrosisclinic

Naomi Thomson One of the many #bouquets I put together today in preparation for #65r

Naomi Thomson

  • 24.05.2018 12:25
  • 5

One of the many #bouquets I put together today in preparation for #65roses day tomorrow. Some of these will be sold in the city on Hay St, as well as single roses that will be sold for $5 each across perth tomorrow in shopping centres. Keep an eye out for the folks in red and support #cysticfibrosis @cysticfibrosiswa #fundraising #supportthecause #cfwa #volunteer #roses #flowers #65rosesday #65rosesday2018 #perth #perthisok

Ric Reyerson A sea of roses for tomorrow's 65 Roses Day. Come see us in Forrest Cha

Ric Reyerson

  • 24.05.2018 11:48
  • 4

A sea of roses for tomorrow's 65 Roses Day. Come see us in Forrest Chase or one of 14 local Perth shopping centers. #65rosesday #cfwa #roses #seaofroses #cysticfibrosis #cysticfibrosisawareness #cysticfibrosisawarenessmonth #cysticfibroses #cysticfibrosisfundraiser #65roses #65 #fibrosekystique #fibrose #mukoviszidose #zystischefibrose

 4 weeks today since Mahlia started all her medication after being diag

  • 24.05.2018 09:48
  • 14

4 weeks today since Mahlia started all her medication after being diagnosed with Cf. I am so incredibly proud of our baby girl, even though she pulls some faces, she takes it all like a champ each and every time! This may only be the start of her medication and physio she will have and do daily, but I hope she can look back when shes older & know each day the extra time we put in to make sure she’s thriving and to stay as healthy as possible. You are so strong princess and in such a short time that you have been in our lives you had made me an even stronger person! We count our blessings every day to be lucky enough to be your Mummy & Daddy 💕 #cf #65roses #babygirl #cysticfibrosis #cysticfibrosisawareness #babylove

Becky #cfawarenessmonth #Mentalhealth “Without mental health, there can be

Becky

  • 24.05.2018 09:34
  • 1

#cfawarenessmonth #Mentalhealth “Without mental health, there can be no true physical health.” -Dr. Brock Chisholm ❤️ For people who struggle with a chronic and/or terminal illness, this quote carries an especially heavy meaning. Researchers have found that people with CF, and parents of children with CF are more likely to have depression than the general population. And this isn’t really a surprise, because having a terminal illness SUCKS, and is sometimes sad, and anxiety provoking. With depression, it can be difficult to take care of yourself and manage the burden of this (or any) disease. I have struggled with anxiety and bouts of depression on and off since I was 16. But for the most part, I’ve done a lot of work on myself and I’m okay. However, last year when I was pretty sick and hospitalized, and for a few months after being hospitalized, I was depressed. It wasn’t something I realized right away, but more of a gradual loss of joy or interest in things I once liked to do, loss of energy, and general low mood. It wasn’t until I started to get my groove back that I realized what a hole I had been in. Luckily, as a therapist, I have a lot of very empathetic and compassionate friends and colleagues. I had people who were there for me and checking on me and keeping me company when I was too sick to go out into the world. I’m so grateful for these people who get it, and get me. Now I meet with a therapist weekly to talk about life and fears, and the legitimate ways that having an illness can mess with you and your happiness. I don’t consider myself depressed anymore, but just facing reality and difficult decisions can be hard and take a toll at times. This is a long post, but basically, if you or someone you know might be depressed, there is help and you are not alone. •💜• #cfawareness #cysticfibrosis #sixtyfiveroses #65roses #mentalhealthawareness #shareyourstory #depression #chronicillness #raredisease #spoonie #therapy #selfcare

Elisha - New Homes Consultant Tomorrow, Friday 25th May is 65 Roses Day for Cystic Fibrosis. So why

Elisha - New Homes Consultant

  • 24.05.2018 09:00
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Tomorrow, Friday 25th May is 65 Roses Day for Cystic Fibrosis. So why not buy yourself or your loved one, a single rose or a dozen! Thank you for your support! Volunteers will be out selling these roses across Perth, tomorrow. #conquercf #conquercysticfibrosis #cysticfibrosis #65roses . . . #interiordesign #interiordesignerperth #interiordesignperth #interiorinspo #perthinteriors #perthinteriordesign #perthinteriordesigner #homedecor #interiordesignideas #interiordesigninspo #interiorstylingwa #homestyling #instahomedecor #monacointeriordesigns #perthsmallbusiness #perthcreatives #interiorstylist #decorating #designinspo #housegoals #perthgirlboss #perthstagram #perthdesigner #perthcreatives #perthlocalbusiness #homebeautiful #wabuilders

Christine Jacklynn You know you have cystic fibrosis when...#cysticfibrosis #cfsucks #65

Christine Jacklynn

  • 24.05.2018 08:37
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You know you have cystic fibrosis when... #cysticfibrosis #cfsucks #65roses #cfawareness #vest #oxygen #nebs #bedside

Sales Rep • Account Manager Diagnosed since 8 months. 18 years old  living strong and not giving u

Sales Rep • Account Manager

  • 24.05.2018 07:33
  • 4

Diagnosed since 8 months. 18 years old living strong and not giving up. People always ask me why im so jumpy, hyper, positive and always cracking jokes. It’s because I love to see people smile, im the “class clown” because everyone around me doesn’t know what they have untill they lose it, making people appreciate life and making them laugh and smile is all I can ask for, I love seeing people happy. I always tell people enjoy life, life is short, appreciate life, because I can’t and knowing I have a short life expectancy due to my cystic fibrosis and I still wake up every morning smiling, I know, I know for a fact all you can too. So please smile when your down because someone has it worse then you. When I’m admitted into the hospital for treatment and I’m going through some depression or frustration and then I see someone with cancer smiling, I tell my self to sulk the fuck up and smile , if that little girl can smile, so can I. Every morning I wake up is gods blessing, treat everyday like your last and enjoy your life. #cysticfibrosisawareness #cysticfibrosis #FuckCF #65roses

Mandy Gough FRESH FLOWER FRIDAY!!! tomorrow....Preorder fresh bunches featuring r

Mandy Gough

  • 24.05.2018 07:19
  • 0

FRESH FLOWER FRIDAY!!! tomorrow.... Preorder fresh bunches featuring roses for tomorrow only - limited numbers with part-proceeds going to Cystic Fibrosis #65roses appeal. $30 beautiful bunches FREE DELIVERY inner city/west and for a small fee to other locations - DM me for more details or to secure your bunch or email hello@bloomingmoo.com Credit card payment accepted!

Laura Harp This beautiful lil girl owns my heart!! 💜💜 #CaliAnnMello #Beauti

Laura Harp

  • 24.05.2018 06:56
  • 4

This beautiful lil girl owns my heart!! 💜💜 #CaliAnnMello #Beautiful #GrammyIsMyName #CysticFibrosis #65roses #BreathEasy #FinDaCuRe #BlessedBeyondMeasure #GodsGift

Becky I love how she will just stare at the ocean with me. I think she loves

Becky

Twin Lakes State Beach

  • 24.05.2018 05:59
  • 0

I love how she will just stare at the ocean with me. I think she loves the ocean breeze as much as I do. It’s so healing and powerful. •🌊🌞💜• #cysticfibrosis #sixtyfiveroses #65roses #coastalliving #santacruz #dogsofinstagram #beachtherapy #saltwatertherapy

44 St Georges Terrace #MooreStephens @exchangetowerperth @cysticfibrosiswa riding from 10am!

44 St Georges Terrace

  • 24.05.2018 05:23
  • 0

#MooreStephens @exchangetowerperth @cysticfibrosiswa riding from 10am! #charityevent #donate #CF #65Roses

Danielle Greening #65roses

Danielle Greening

ACU North Sydney Campus

  • 24.05.2018 05:06
  • 1

#65roses

Ceci’s Lashes FUN FACT!!! 💜💜💜💜 Not all of my followers know unless I’m

Ceci’s Lashes

Texas Children's Hospital

  • 24.05.2018 04:59
  • 7

FUN FACT!!! 💜💜💜💜 Not all of my followers know unless I’m setting appointments for yous. But I’m a nurses’ aide for a world known Children’s Hospital. And I work nights on one of the best patient care floors at Texas Children’s Hospital. It is one of my passions to care for each one of my patients and I treat every single one as if they were my own. Working at a Children’s Hospital has to be the best. It keeps you young and on your toes. Not to mention I love the staff I work with. I couldn’t get through my shifts without you guys. #NightShiftPCA #fuckcysticfibrosis #65roses #lovemycysticfibrosispatients #ilovewhatido #CecisLashes #LashArtistByDay #PCAbyNight #lashextensions #lashartist #eyelashes #eyelashextensions

Alyssa's Story YOGA FUNDRAISER!!!!Alyssa's Avengers Presents: YOGA ON THE BAY WITH M

Alyssa's Story

Seaside Heights, New Jersey

  • 24.05.2018 04:54
  • 0

YOGA FUNDRAISER!!!! Alyssa's Avengers Presents: YOGA ON THE BAY WITH MISS.TRISH! WHEN: SUNDAY, JULY 8TH, 2018 TIME: 7:00PM - 8:00PM WHERE: ON THE BAY (NEXT TO STEWART'S ROOT BEER IN SEASIDE HEIGHTS!) PRICE: $15.00 BUY TICKETS ONLINE: https://ticketbud.com/events/dbf29642-5ee2-11e8-9815-4fff9785a678 OR IN PERSON: CONTACT DANIELLE CICALA VIA FACEBOOK/INSTAGRAM OR EMAIL, ALYSSASAVENGERS65@GMAIL.COM TICKET SALES CLOSE JULY 2ND, 2018 COME DOWN TO THE SHORE AND SUPPORT A WONDERFUL CAUSE WHILE GETTING YOUR YOGA ON! 🎉 ・・・ #ALYSSASAVENGERS #cysticfibrosis #nonprofitorganization #lungdiseasesawareness #cysticfibrosisfoundation #cysticfibrosisawareness #educate #love #inspire #like #alyssamarievincente #65roses #findacureforcysticfibrosis #cysticfibrosisfighter #cysticfibrosisawarenessmonth #cysticfibrosislife #findacure #organdonation #organdonationrecipient #becomeanorgandonor #volunteerswanted

44 St Georges Terrace The #BUILTWorthy team up first and foremost! @cysticfibrosiswa @excha

44 St Georges Terrace

  • 24.05.2018 02:45
  • 1

The #BUILTWorthy team up first and foremost! @cysticfibrosiswa @exchangetowerperth #Charityevent #Spin #65Roses #Donate #cysticfibrosis #TeamVAULT

ॐ leigha elaine ॐ #CysticFibrosis causes the mucus in the body to be very thick & sticky

ॐ leigha elaine ॐ

  • 24.05.2018 02:42
  • 5

#CysticFibrosis causes the mucus in the body to be very thick & sticky.. The mucus can easily clog the lungs causing chronic infections & inflammation.. Lily does breathing treatments & chest physical therapy twice a day (morning & evening) to help keep her lungs clear.. We start Lily’s treatment with a couple puffs of albuterol from an inhaler & it opens her airways to get her ready for the sodium chloride.. She inhales the sodium chloride through a nebulizer wearing that cute little turtle mask.. It’s pretty much just a salt water solution & it helps liquify the mucus.. Then we put her little purple vest on & she does her ‘shakies’ which breaks up the mucus so she can easily cough it out.. For the past year Lily has been on antibiotics for pseudomonas.. The antibiotic she takes is also inhaled through the nebulizer, we just use a different mask with it & we always do it last.. This is a crucial part of Lily’s care.. She has no days off when it comes to her treatments.. They must be done every single day in order to keep her as healthy as possible.. It takes approximately 2 hours to finish, that’s about 4 hours a day Lily spends doing lung therapy.. Hopefully the antibiotic will eventually heal her pseudomonas but the albuterol, sodium chloride & vest will absolutely be a part of her daily regimen for the rest of her life.. 💜 #LilyGaia #warriorprincess #LilCyster #65roses #justbreathe #saltycyster #CFirl #cysticfibrosisawareness

✨R E B E C C A R O B E R TS ✨ Isla, always dancing and singing! Hey we got a huge discount on some s

✨R E B E C C A R O B E R TS ✨

Gilroy Gardens

  • 24.05.2018 02:31
  • 1

Isla, always dancing and singing! Hey we got a huge discount on some season passes at Gilroy Gardens if anyone want to come with us!!! . . . . . . #health #healthcoach #photography #mom #momlife #motherhood #parenting #art #artist #writer #cysticfibrosis #65roses #fitness #fitfam #fitmom #housewife #homemaker #food #foodie #family #fashion #cutekids #california #montereybay #cook #travel #jesus #rheumatoidarthritis #rodanandfields

My CF Life “If you go around being afraid, you're never going to enjoy life. Yo

My CF Life

Na Pali Coast

  • 24.05.2018 01:46
  • 1

“If you go around being afraid, you're never going to enjoy life. You have only one chance, so you've got to have fun.” - Lindsey Vonn Cystic Fibrosis can be a scary thing. It shortens life expectancy and can definitely cause lower quality of life. However, with hard work and determination we can overcome this disease. I try to enjoy each day as it comes because even though there is much to fear with Cystic Fibrosis, or any type of illness, we need to try and enjoy each day as they come because the one thing we can’t get back is time. #cysticfibrosis #65roses #cfril #dailymotivation #mycflife

Skylar 💪🏽 People often ask me what’s my prognosis, am I going to need a lung t

Skylar 💪🏽

  • 24.05.2018 01:24
  • 9

People often ask me what’s my prognosis, am I going to need a lung transplant in the future or if I’m on a waiting list for a transplant. • As of right now, the answer is no! • I’ve been lucky enough that it’s not a discussion I’ve had to have with my team of Doctors. • Although, lately, we’ve had to try different treatments, adding and replacing, and we even booked my sinus surgery to get my nasal polyps outs. I’m looking forward to these new adjustments that will lead to positive effects and for now, I’m just focusing on just that! • In other words, it's very tempting to take the easy way out and give up on ‘trying’. Try and try and try again. We grow, and we learn from not having the answers given to us right away. Get excited when something doesn’t work out right away, it means you are strong enough to handle what was thrown at you. Embrace it! • For now, I'll try as many different treatments as it takes to find what works for me and my body. 💕

𝓐𝓷𝓷𝓪 Bei 🌧 wird doch lieber ein Bild mit ☀️ gepostet 😍Heute hat

𝓐𝓷𝓷𝓪

  • 24.05.2018 01:17
  • 3

Bei 🌧 wird doch lieber ein Bild mit ☀️ gepostet 😍 Heute hat es hier öfter mal geregnet und das Wetter war nicht wirklich prickelnd. Da hat es sich angeboten einfach mal drinnen etwas aufzuräumen und anschließend die Füße hoch zu legen! Ich hab mit einer meiner beiden Katzen einen Mittagsschlaf auf dem Sofa gemacht 😛 #dailypost#mukoviszidose#cysticfibrosis#cysticfibrosisawareness#65roses#65rosesforcysticfibrosis#saltygirl#staystrong#neverstopsmiling#nevergiveup#smile#zoo#girl#blogger#blogger_de#lifestyleblogger#lifestyleblogger_de

Sandi Parsons, writer 31 Days of Cystic Fibrosis. May 24Staying at Home After four weeks i

Sandi Parsons, writer

  • 24.05.2018 00:38
  • 1

31 Days of Cystic Fibrosis. May 24 Staying at Home After four weeks in hospital, I went home. Physically, it would have been easier to stay in hospital, but I knew if I didn't keep challenging myself, I would go downhill quicker. The days merged into weeks, then months as I waited for the call that would change everything. I spent my mornings in bed, Bi-pap assisting me to breathe, as I read with Monkey at my side. At mid-day, I’d switch over to the oxygen concentrator with its 20-meter cord, and we’d slowly make our way to the kitchen for brunch. Next, Monkey would stretch out on the bathroom tiles while I showered. After that, we’d head to the lounge-room. Either we’d share the couch, or she’d lay on the floor beside me. This routine was punctuated by attending various medical appointments and visits from Dale, my @cysticfibrosiswa homecare worker. Each day was physically harder than the last until it was no longer safe for me to drive any distance and my Mum had to chauffeur me to my clinic appointments and the gym. Bonus Fact: Although the technical term for Bi-Pap is non-invasive ventilation, Monkey found this treatment rather invasive. Even under the best of circumstances, she didn’t like me to breathe near her face. Now, with my ragged breathing sounding not dissimilar to Darth Vader with a head cold, she’d found something she could not tolerate. But it was her duty to ‘look after’ me and she refused to let this get in her way. Her solution, as I lay in bed reading was to snuggle her backside under my armpit, so the steady stream of air emitting from the Bi-Pap mask was well away from her face. #cysticfibrosis #31daysofcysticfibrosis

sketchcoffeeandart FREE COFFE between 8 and 12,  with every donation-  Make every coffee

sketchcoffeeandart

  • 24.05.2018 00:37
  • 0

FREE COFFE between 8 and 12, with every donation- Make every coffee count tomorrow- for 65 Roses Day supporting those living wit cystic Fibrosis , we have partnered with @cfcc_nsw . Your cuppa will make a difference! #cf #cfcc #65roses #foracause #makeitcount #lifeasweknowit

BEF Hope is often a powerful force empowering those who live with incurabl

BEF

  • 24.05.2018 00:02
  • 2

Hope is often a powerful force empowering those who live with incurable diseases. In the final video for #CFAwarenessMonth, @esiason17g shares his hopes for the future, a cystic fibrosis cure, and being able to breathe normally. Watch! . . . #cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cffighter #cfirl #cfawareness  #cfstruggles #breathe #doublelungtransplant #chronicillness #lungs #cfsucks #cysticfibrosisawareness #findacure #cflife #65roses #curecf #organdonation #raredisease

Somer Love Have you ever wondered where the term

Somer Love

Xcel Fitness

  • 23.05.2018 23:54
  • 11

Have you ever wondered where the term "65 Roses" comes from.... The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease, since Cystic Fibrosis can be difficult to say. . The "65 Roses" story has captured the hearts and emotions of all who have heard it. I had the pleasure of interviewing Richard the boy from this story when he was awarded the Heroes of Hope Award back in May of 2008. . The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation. 🌹❤️ This pic of Drae and I was taken at the Crossfit 4 Cystic Fibrosis event last year. I'm so excited for this years event coming up on June 9th at Xcel Fitness learn more about it over at @crossfit4cysticfibrosis you won't want to miss it! Breathe out Love! Xo❤️ . . . . #LoveToBreathe #65roses #crossfit4cysticfibrosis #crossfit #cfawareness #cfawarenessmonth #curecf #inspo #strength #fight #wod #live #love #breathe

tiffrich22 CF Awareness Day 23: Sinus Problems👃🏻Yes, CF does impact another

tiffrich22

  • 23.05.2018 23:07
  • 1

CF Awareness Day 23: Sinus Problems👃🏻Yes, CF does impact another area of the body…CRAZY, RIGHT?!?!?! 😳😳 It, also, affects the sinuses. The sinuses are part of the upper respiratory tract. Their warm and moist epithelium humidifies the air and tends to capture and filter out the good and bad particles that we breathe in. In a person with CF, the sinuses tend to be inflamed, aka a condition called sinusitis (most of the time it’s chronic). This causes multiple symptoms like nasal obstruction, chronic congestion and discharge, headaches, and post-nasal drip. Most CFer’s develop nasal polyps. These are benign masses that form in the sinuses that block the nasal and sinusoidal drainage. This can lead to sinus surgeries in order to remove them (polypectomy). The other thing is that the sinuses can easily develop an infection, just like in the lungs. Due to the lack of drainage of the sinuses and CF, bacteria get trapped up in the sinuses causing it to grow into an infection. To reduce the need for antibiotics and getting an infection, the discharge needs to come out. For me, Sinus rinses are one of the best and easiest ways to do this. This uses warm filtered water and a saline mixture packet that is sprayed into the sinuses. This flushes and clears out all the mucus sitting in the sinuses and nostrils and allows one to breathe a lot easier. Plus, it reduces the likelihood of an infection to flourish and possibly travel down to the lungs. Most of the CF population has sinus issues. I did not get bad sinus problems until after transplant. I now need to get sinus surgery to clean out my sinuses due to it being a bit clogged in there. Thankfully i do not have any polyps. In my daily schedule for my sinuses, I do a sinus rinse a couple times a day and I do nasal sprays.🤧🌹💜 — #TiffGotLungs #lungs4tiff #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cfirl #saltycysters #youtube #cyster #fibro #love #laugh #hope #donatelife #organdonation #dream #donor #curecf #65roses #recycleyourself #taylorswift #thankful #blessed #justbreathe #greatstrides #sinus

65 Roses Only the best #JumpRope in the game! @rxsmartgear supports #65Roses an

65 Roses

Salt Lake City, Utah

  • 23.05.2018 22:43
  • 1

Only the best #JumpRope in the game! @rxsmartgear supports #65Roses and hooked us up for some prizes! THANK YOU #RXSG! . #Crossfit #Crossfit4CysticFibrosis #CysticFibrosis #CF4CF

Jackie💜 What I wear biking vs. what my mom wears 🤣 who think she needs to b

Jackie💜

Bull Run Regional Park

  • 23.05.2018 22:41
  • 22

What I wear biking vs. what my mom wears 🤣 who think she needs to buy some workout clothes!? 🚴🏻‍♀️ • Knowing since the end of last year that I’d be getting my hip replaced, I’ve been SO excited about being able to exercise...for good this time, without bumps stopping me & without pain. In 2014, I ran a mile for the first time since high school...and while I felt so accomplished, I hated every single step. Running just isn’t for me...I was so bored the entire time. But I realize that biking is for me. The time flies by & when the wind blows it actually feels like you could be flying. The plants are so green, the birds chirping...I don’t even need music. • Because of the trauma surrounding my transplant and the complications I’ve had, my lung function has only gotten to 62%. Which, 62% is a h*ll of A LOT BETTER than 28%. But I’ve made a new goal of 70%. And I’m gonna get there from riding my bike. So today, I’m openly letting all of you know my goal of 70% lung function, biking to get there. 💜

Andrea’s angels We had a terrific Tuesday around Des Moines. Took the fam to check out

Andrea’s angels

Des Moines, Iowa

  • 23.05.2018 22:03
  • 0

We had a terrific Tuesday around Des Moines. Took the fam to check out @mainframearts where my niece got to meet and chat with storyboard Illustrator Adam VanWyk, and talk gaming with Josh and Will of Numinous Games. My mom was gifted a beautiful hand blown ornament by JJ Gaffers. . We ended the evening meeting up with the Danger family and enjoying fabulous sushi at @wasabidsm . Playing with my new @mtjme #65roses #hoorag . Making fun no matter where we go!

✨R E B E C C A R O B E R TS ✨ Cricket the pug. I still have a loving shih tzu boy ready for his new

✨R E B E C C A R O B E R TS ✨

  • 23.05.2018 20:23
  • 5

Cricket the pug. I still have a loving shih tzu boy ready for his new home! Go to peace of mind dog rescue to give him a forever home! . . . . #health #healthcoach #photography #mom #momlife #motherhood #parenting #art #artist #writer #cysticfibrosis #65roses #fitness #fitfam #fitmom #housewife #homemaker #food #foodie #family #fashion #cutekids #california #montereybay #cook #travel #jesus #rheumatoidarthritis #rodanandfields

Emily 23.5.18 today I got the best news ever. The biopsy results came back

Emily

  • 23.05.2018 20:14
  • 19

23.5.18 today I got the best news ever. The biopsy results came back and everyone did fear that it would be the PTLD (cancer) like last year. But it’s not. I’m officially in the clear. I’ve been waiting for this news anyway since November last year. As soon as I heard the news earlier I was in tears. I beat PTLD 🙏🏻 #cysticfibrosis #65roses #cysticfibrosisawareness #cysticfibrosisfoundation

Klyn How many times do our problems stop us when the chase should be our fo

Klyn

San Diego, California

  • 23.05.2018 19:43
  • 5

How many times do our problems stop us when the chase should be our focus?!

Sabrina Andersen Todays PW, Outdour/Indoorgym completed 💪💖💋 #fitness #pain #mu

Sabrina Andersen

Fällforsån, Västerbottens Län, Sweden

  • 23.05.2018 19:37
  • 3

Todays PW, Outdour/Indoorgym completed 💪💖💋 #fitness #pain #muscles #outdoorgym #powerwalk #healtinspiration #cffitness #cfwarrior #cysticfibrosis #cystiskfibros #idothisforme #allthatmatter #65roses #cfawareness #girlscompetewomenempower #Betterbodies #gymlife #mygoal #workout #workoutvideo #cysticfibrosisvideo #noexuses #nevergiveup #strongerbetteryou

Alessio Tomasella One of my passions 😊#asaltylife #cysticfibrosis #cfirl #CFLife #MyL

Alessio Tomasella

Ferrata della Memoria

  • 23.05.2018 19:19
  • 1

One of my passions 😊#asaltylife #cysticfibrosis #cfirl #CFLife #MyLifeWithCF #LifeWithCF #65roses #fibrosicistica #montagna #mountain #mountains #lovemountain #mountainlovers #mountainlover #mountaingram #mountainaddict #viaferrata #vieferrate #ferrate #ferrata #ferratadellamemoria #vajont #digadelvajont #me #picoftheday #photooftheday

The Vivian Lee Foundation As part of cystic fibrosis awareness month, I thought I'd take a momen

The Vivian Lee Foundation

  • 23.05.2018 18:53
  • 7

As part of cystic fibrosis awareness month, I thought I'd take a moment to share pieces of our personal CF journey. It's not easy to be vulnerable and transparent, but awareness is at the root of who we are here at The Vivian Lee Foundation. This is part 1: Vivian and her twin brother, Graeme, were born on January 1st, 2015. By Saturday of that same week, we started to notice that Vivian was not eating. She was very lethargic and when she did eat she would spit up the whole bottle. I called our pediatrician and she advised us to take her in to Randall Children’s Hospital to be monitored. We headed in that night with the twins, expecting to be there for a few hours or possibly overnight. Little did we know that we would end up being there for 12 days. After a couple days of not eating and not gaining weight, we were getting worried that something besides low birth weight was causing Vivi to decline. We knew that both Kirk and I are carriers of the gene for cystic fibrosis, and had given this information to the doctors. Because of this, we knew that Vivian had a 1/4 chance of having CF. They did a couple of tests to try to figure out if it was indeed CF. We put her on enzymes before her feeds, and within 24 hours she had started to gain weight. That was a major sign that this was indeed CF, since she responded so well to the enzymes immediately. We then confirmed her diagnosis with a blood test. Currently, the average life span of someone living with cystic fibrosis is 47 years old. Our dream is more, we are fighting for more. Today Vivi, a normal CFer, has many daily medicines, therapies and practices that affect her life. She will have to take enzymes every time she eats and do her chest treatments 2x/day for the rest of her life. Not only is this disease inconvenient, but it is expensive and very scary. (Story to be continued...)

Katrina Rosemire More about germs... because germs can be dangerous... #amberlystrong #

Katrina Rosemire

  • 23.05.2018 18:46
  • 0

More about germs... because germs can be dangerous... #amberlystrong #curecf #greatstrides #65roses #cysticfibrosis #cysticfibrosisfoundation #weneedacure #addingtomorrows #CFF #raisingawareness #greatstridesor #Cfparent #justbreathe #breatheeasy

Cassey Woodall If you haven’t seen the music video, “I Lived”, by OneRepublic w

Cassey Woodall

  • 23.05.2018 18:30
  • 3

If you haven’t seen the music video, “I Lived”, by OneRepublic watch it now! It was dedicated to a boy living with cf. I cry every time. Last year, Sam and I decided that we wanted to take this month (May is CF awareness month) and do the best we can to raise money for the cf foundation. Since the cf foundation does not receive federal funding, it becomes our job as parents to advocate and help raise money for research. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. It’s always uncomfortable to ask for donations, but this is the only way a cure can be found. We are blessed that Harlow is happy and healthy right now, but everyone gets sick. I’m afraid for the day when she gets a cough or bad cold. The unknown is scary. There are many days when I cry at my bedside or in the shower and no one knows. It’s not always convenient or easy to do her treatments. She fights me and it breaks my heart. I hate that I always have to worry about her being around a large group of people... I can now hear a cough a mile away. In two months she will be old enough to go to nursery at our church and I hate that I’m terrified for her to be with a few other kids (germs!!). It’s hard to think that she will have to do all this extra stuff every day for the rest of her life, but it has become routine. I know that I’ll never stop worrying, but I know it will get easier. I never want cf to be the thing that defines her. She is spunky and determined and know that the Lord has great things in store for her. #cfawareness #cysticfibrosis #65roses #gogoharlow

65 Roses Where my Dads (and Moms) at?! @missioncriticalgear supports #65Roses a

65 Roses

Xcel Fitness

  • 23.05.2018 18:26
  • 0

Where my Dads (and Moms) at?! @missioncriticalgear supports #65Roses and hooked us up with a bunch of their awesome products to use as prizes! THANKYOU #MissionCritical for the #love! 🙌🏽 . #Crossfit4CysticFibrosis #CF4CF #CysticFibrosis

The Vivian Lee Foundation Our next #vivisvintagemarket is only one month away. You know what tha

The Vivian Lee Foundation

  • 22.05.2018 22:40
  • 8

Our next #vivisvintagemarket is only one month away. You know what that means...? VENDOR HIGHLIGHTS are back! We are thrilled to welcome @chipandchisel and we think you will enjoy all the pretty little sparkly pieces they have in store for our shoppers.