#CFLife

Instagram photos and videos

#cflife#cysticfibrosis#cysticfibrosisawareness#cfwarrior#fitspo#cfawareness#cf#barbell#CFlife#CF#chronicillness#fitness#fibrosisquistica#curecf#runner#running#deporte#65roses#arnasafighters#fq#run#cfirl#ORKAMBIya#arnasaaraba#hope#dandoalientoalosbesossalados#arnasafigthers#besossalados#ORKAMBIorain#everestingchallenge

Hashtags #CFLife for Instagram

Who would you be ready to go on an adventure with? ⠀

#adventure #ride #partnerincrime #partners #cysticfibrosis #aworldwithoutcf #invisibleillness #cflife


0

We leave the Banff area today. 😩 Before we go, we thought we’d share our space. It tucked into a junky corner of a packed RV Park. So, while we weren’t fancy or in the center of the National Park, we found a space last minute; and if you ignore the clutter, you will see we were surrounded by the beauty of the Canadian Rockies AND within 1 - 1 1/2 hours to everything we wanted to do (5 minutes from the entrance to Banff National Park). We now know the area a bit, and will plan better next time. Plus, if you are planning a trip to the area and have questions, we can offer suggestions. We will be posting some videos soon on our YouTube channel of our time here. Now on to Glacier NP (if we can find a place to stay 😬😉). Have you been to Glacier National Park in the US? Where was your favorite place to stay? What was your favorite thing that you saw or did while at Glacier NP? #cftravelers #cftravels #cysticfibrosis #cflife #faithoverfear #fulltimetravel #fulltimervfamily #welovecanada #glaciernationalpark #glacierorbust


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sta foto sembra un cazzo di quadro del rinascimento, ci voglio la firma di Leonardo in un angolino. 🎈mi trasferiscono all’ospedale per gli adulti (e non so se gioire o piagne). alla prossima visita conosco una delle dottoresse, che dice sono BRAVISSIME, SIMPATICISSIME, LEVISSIME E PURISSIME. e d’ora in poi i ricoveri saranno nell’ospedale grande e brutto, così se mi servono apparecchi più fantascientifici ce li hanno più facilmente.
dopodiché una bella dose di epatite b perché era l’unica malattia che mi mancava dal bingo e volevo prendere anche quella (no sche era un vaccino). 🎈IM GETTING TRANSFERED TO ADULT CARE SDNGHGNGN IM 16 🤩😭 so next check-up i’ll meet one of the adult docs and my next inpatient admission will be in the huge ass adults hospital and idk if i’m happy or nah bc on the cons:
-lonely
-everything is new and ik the childrens hospital so well 😩
-there’s a play and craft room in the children’s hospital what will i do without it
-no pets for adults 🙍🏼‍♀️
on the pros:
+I CAN BE THERE ALONE +i can go out sometime (like really out... as in city center or so)
+there’s like a mall in that hospital. a bank a hairdresser a grocery store hngngn


3

A few days ago, this little muffin decided that she no longer wanted to be rocked or nurses to sleep. After a couple nights of struggle and one night of no sleep and screaming, my frustration led me to put her down in her crib and walk out of the room. Ten minutes later, she was out. Thus began our sleep training. That’s right! This little girl now goes to sleep all by herself. Which is both amazing and heartbreaking. My big girl 😢
#mattieroo #baby #babygirl #babiesofinstagram #babystyle #babyfashion #candidchildhood #uniteinmotherhood #motherhoodsimplified #girlmama #ohheymama #loveofmylife #briarhandmade #dearloa #smallbusiness #smallshop #smallshoplove #shopsmall #bonnets #bonnetlife #modernbonnet #persuepretty #cf #cflife #cfbaby #cysticfibrosis #cysticfibrosislife #cysticfibrosisbaby #cysticfibrosisfighter


1

It takes a village. Penny, Adam and I are so thankful for ours 💗. Hand smooches for Nana and Papa are all the evidence you need 😘.
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My dad, on the right, quit smoking after 40+ years when Penny was diagnosed. It was incredible. Obviously, smoking is a huge no-no around Penny. Under advice from her respirologist, we avoid any smoking at all costs (yes, I’ve ran through a parking lot to get through an unavoidable cloud quickly 🤷🏻‍♀️). If friends or family do smoke, we ask that they shower, change their clothes, and wash their hands prior to handling Penny. It always feels AWKWARD talking about this to our loved ones who do smoke! We’re not here to judge their choices or hinder their enjoyment of an event. BUT making sure Pennys lungs are as protected as possible for as long as possible simply has to be priority number 👆🏼. .
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Any other CF parents or CF adults out there? Thoughts on the smoking battle??
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#cysticfibrosis #cfparent #sixtyfiveroses #65roses #cfstandsforcurefound #pennyspeeps #smokingcessation #cfwarrior #ittakesavillage #raredisease #cfwarrior #saltykid #saltygirl #cflife #pennymaureen #breathebravely #justbreathe


2

Clinic days #cflife can’t even remember how many #sweattest she’s had done now😂 @cftrustuk


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Back to the hospital to see why this little monkey keeps getting a high temperature
#cflife #cf #cysticfibrosis #bravegirl #fighter


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🌟HAPPY LAUNCH DAY! Growing Up Sick: How to Turn Your Kid’s Scary Diagnosis into a High-Quality Life is now available in Kindle and Paperback! 🤗🎉 link in bio


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🔊Fundación Vital sigue apoyando a los Besos Salados!! 🎊Nos dejará mobiliario para la sede en Peñacerra del Everesting Challenge!😮😮 Molaaaa! 😎Esto marcha!!💪
Fundación Vital, que suerte tenemos de contar con organizaciones como vosotros de nuestro lado!!❤️❤️ FQ: ESTÁS SOLA!!! VAMOS A POR TIIIII!!!💪💪
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🔊Vital fundazioa gure musu gazien sostengua jarraitzen egongo da!!🎊 Arku bat utziko digute Jaiverrek hortik bueltak emateko!!😮😮 Hau martxan dabil!!😎
Vital fundazioa, zelako zortea daukagun gure alde beti egotearren!! ❤️❤️FK, BAKARRIK ZAUDE!!! ZURE KONTRA GOAZ!!!💪
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🔊Fundación Caja Vital are still supporting to the Salty Kissess!🎊 They will lend us furniture for the Everesting Challenge point!😮 Wow!! This is working!😎
Fundación Vital, we are very lucky for having you by us! ❤️❤️FQ: you are completely alone! We are after you!💪
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle


0

Girl it is 6am. Could you not sit on your mother's chest yet. #Thorin #CatsOfInstagram #Cflife #CfAware


0

Give me a 🙋🏼‍♀️ or a 🙋🏻‍♂️ if you have fed your baby a spoonful applesauce at two in the morning.
And what about a 🤦🏼‍♀️🤦🏻‍♂️ if your child, like mine, has swatted said applesauce onto your clothing, floor, the couch, their face, anywhere but their mouth really, in their sleep. Because I am all of the above!
This is the face I imagine Caroline would make if she were awake to witness her own handiwork. 🤦🏼‍♀️🙋🏼‍♀️🤷🏼‍♀️ #morethancf #choosejoy #gratitude #hope #choosehope #cfcureforcaroline #momlife #cflife #cysticfibrosis #cfbaby #cysticfibrosisawareness #cysticfibrosisfighter #cf #cfcureforcaroline #teamcaroline #geneticdisease #torticollis #exclusivelypumping #choosehope #hope #curecf #cfirl


11

This is the most common cystic fibrosis mutation... let’s end this💜💜💜 #kyleescause #endthisnow #strong #yougotthis #cflife #stupidcysticfibrosis #f508mutation #cfawareness


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I haven't done one of these in a long time, so here's a Medical Update: Last October I had a routine surgery to get nasal Polyps removed along with getting my deviated septum fixed, although they got a good portion of the polyps, the were still plenty and they didn't hey to my septum due to me walking up in surgery and finding out I have a collapsing airway that I can't do anything about except make sure I don't overwork myself. Fast forward to now, my polyps are back and possibly worse than before causing constant pressure and pain as well as causing an infection in my sinuses and o still have my deviated septum on top of that so I have been house ridden for the past month or so. At first they said they couldn't fit me in for surgery until October of this year but now after fighting with them they moved it to Early August. The only problem is that I leave for Power Morphicon in CA 6 days later and I don't know if that's enough recovery time, i've been planning this trip for two years so that does make me nervous but I haven't been able to be nervous on that because my insurance has been fighting me the past 3 weeks saying that there's a mystery insurance that is on my profile which is not allowing my medications to be filled and they are the medications I need to take to survive with transplant but no one knows how to take the mystery insurance off and I'm almost out of meds. I know, it's a head spinner but i'm hanging in, I still have my spirits up. I just don't enjoy doing updates because I don't want pity, no matter what i've gone through or go through, I am still so thankful for the life I do have.
#chronicillness #cysicfibrosis #cf #cflife #chronicillnessawareness #transplant #cysticfibrosisfighter #invisibleillness #lungdisease #lungtransplantsurvivor #65roses #lungtransplant #cysticfibrosisawareness


3

Social media. We all talk about it endlessly! The pros. The cons. You're on social media right now actively reading this...SO
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Join the @saltycysters and friend Somer Love, filling in for @esiason17g , as they discuss how social media has brought them closer to other CFers in the community and resulted in positive experiences overall.  They share advice on how you can make lasting connections and more!
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#cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cffighter #cfirl #cfawareness  #cfstruggles #breathe #doublelungtransplant #chronicillness #lungs #cfsucks #cysticfibrosisawareness #findacure #cflife #65roses #curecf #organdonation #raredisease


2

Day 2. Picc line days are hard. But we are thankful. No more pokes from this point forward. I am kind of funny as I wake up from the anesthesia...although I doesn’t find much funny. Some of my moms favorite ( I don’t remember any of this BTW) things I said are “I am cold. I am going to bury myself (in the covers)“ “ooooo. I feel like a butterfly.” “Whhherrreee’s Mylee????? (As I was buried)” “Mom! They have paralyzed me!” “I want to sleep! I am so tired. I neeeedddd anesthesia so I can sleep some more.” And to the very kind nurse helping us “you need to work faster.” Comment down below what your favorite thing I said was/ if you have funny stories like this! ••••••••••••••••••••••••••••••••••••••••••••••••••• #fruitsstrong #cfwarriorprincess #cfsucks #cflife #cfirl #cysticfibrosis #aintnomucusgonnastopme #rockcf #CLErocksCF #cffighter #dowhatyouthinkyoucantdo #makeCFstandforCureFound #strongAGAINSTcf


5

🎊Otro comercio que dona su talento y esfuerzo al Everesting Challenge!! ➡️ @fitnessdigital asesorará a Javier Prieto sobre nutrición para estar a tope antes, durante y después de la prueba y le proporcionará los alimentos específicos que necesite!! 🔝🔝Qué decir, Finess digital… que además de ser un referente europeo en el sector del fitness, tiene un saco lleno de solidaridad y se la regala a Arnasa Araba y Javier Prieto!!💎 Mil gracias por estar ahí y cuidar de nuestro Javier. 💎Animaros a conecerles!!
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🎊Beste salerosketa batek beraien talentu eta esfortzua ematen diguna Everesting Challenge-rako!!➡️Fitnessdigital.com Javier Prieto aholkatuko du nutrizio partetik. Topera egon dadin lehenik, tartean eta probaren ondoren, beharko dituen elikagai konkretuak emanez!!! 🔝🔝Zere esan dezakegu fitnessdigital.com buruz, punta-puntako salerosketa dela eta elkartasun bete zaku daukala!!! 💎Eskerrik asko hor egoteagaitik eta gure Javier saintzeagaitik. 💎Anima zaitezte eta ezagutu fitnessdigital.com
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🎊Another Company donates their talent and effort to the Everesting Challenge! ➡️Fitneesdigital.com will advise to Javier Prieto to be fit before, during and after the challenge and they will give him specific nutrional supplements to be 100% ready! 🔝🔝What to say Fitneesdigital.com. you are not only an incredible company, you also have a bag full of solidarity! 💎Thanks million to be there and take care of our Javier. 💎Come on guys, meet them!
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle


2

Look at this adorable AffloVest @semiseriouschefs made for Baby Sea Otter! Now "no one has to do treatments alone in their house!” Thanks again for sharing! Share your photos or videos with us by tagging us with #AffloVest


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#epicseries in LA last weekend. Such a great #WOD #burpeesarethedevil #womanwithmuscles #cflife


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Hey @afflovest! Sure would have been cool to have the view on the right instead of the floor of the RV for Maggie-Faye to do her vest. #justsayn #cysticfibrosis #cflife #southcarolinaishomestate #fulltimetravel #fulltimervfamily


2

#tbt to the time when Chelsea was celebrating victory at @lawnsummer nights. Have you ever been to a LSN event? 😎

#lawnsummer #breatheburger #food #burger #cysticfibrosis #aworldwithoutcf #chronicillness #invisibleillness #cflife


0

You've got #soul. You are a #warrior. We will fight this fight with you, until there is a cure. @shermanmandie 💙
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The Vest®️ Airway Clearance System.
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#cflife #airwayclearance #thevestsystem #thevestairwayclearancesystem #thevest #vest #cysticfibrosis #cf #cysticfibrosisawareness #65roses #sixtyfiveroses #airwayclearance #hillrom


1

https://youtu.be/Ip9eV0MuiF8. Link in our bio
🔛Vídeo en en el canal de Javier Prieto Pedales Solidario con entrevista a nuestro presidente.
➕FQ:Vamos a por ti. Los #Arnasafighters están preparados.➕
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🔛Vídeo in Pedales Solidarios YouTube Channel from Javier Prieto. There is a interview to our president.
➕CF: we are after you. The #arnasafighters are ready!!!➕
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle


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AffloVest Tutorial Series: Our next video shows you how to clean and maintain your AffloVest after use. For more videos like this check out our YouTube Channel (Link in bio)


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Canadians with cystic fibrosis born today have an estimated median survival age of over 50. Because of research and medical advancement, they live longer and healthier lives. Although the aging process can bring its own challenges, it is also an exciting time. So this month, some of our community members will respond to the question: what it is like to growing older with CF? Please, feel free to join the conversation and share your own experience of aging with cystic fibrosis. ⠀

#Repost @cfcanada
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#growingold #growingolder #aging #cysticfibrosis #aworldwithoutCF #CFlife #research #healthcare #spoonie #chronicillness


0

Being in hospital means Elliot can watch whatever he wants, including Christmas films - Nativity 2 - even if it is the middle of Summer... 🙈🙉🙊 #merrychristmas #nativity2 #cflife #cysticfibrosis #ivtime #christmastree #christmasfilms #middleofsummer #hospital #hospitallife #saltykids #cfkids #summer #summerholidays


1

Spoons🥄🥄🥄
I know many of you have heard me talk about 'spoons' or call myself a 'spoonie' before but may not know where it comes from or what it means!

The Spoon Theory is a way for chronic illness peeps to describe and explain their limited energy. Spoons symbolise energy - lots of 'spoons' means lots of energy to complete tasks and take on the day, not so many 'spoons' means less energy. I have found it extremely helpful when dealing with my own depleted energy levels, something which is quite new for me.

Simply put, each person will wake up with a certain amount of 'spoons' and each action they take that day uses up a certain amount of those spoons. Being ill, forgetting medication or using lots of spoons the day before also contribute to decreasing the spoons you wake up with. Some days I have enough spoons to do everything I want. Other days I have to pick what I can manage and be ok with that.

The Spoon Theory has helped me manage my energy and recognize when I should take it easy and when I can let loose, and given me a way to effectively communicate this to people around me.
#cysticfibrosis #CFLife #chronicillness #chronicillnesslife #sixtyfiveroses #spoonie #spoons #spoontheory #invisibleillness


4

Hello! Day 4 in the hospital. So far this is the worst time here. And just because I have never felt so bad in my entire life! I can barely walk, just few metres then I can't breathe and my SpO2 drops to 70%. My FEV1 decreased to 30%. And ALL I can hear from nurses is how bad I breathe. Well no shit.
But is this gonna stop me hell no

Any cf patient want to talk with me
I just need to have a conversation with a person that can understand me a little bit
#cysticfibrosissucks #cysticfibrosis #CF #cflife #cysticfibrosislife #cysticfibrosisawareness #cysticfibrosisfighter #fucf #cffighter #cfawareness #sixtyfiveroses #ivs


8

"Strength does not come from winning. Your struggles develop your strenghts. When you go through hardship and decide not to surrender, that is strength." - Arnold Schwarzenegger
Throwback to my graduation.

#graduation #grad #postgrad #throwbackthursday #tbt #strength #growth #university #cheerleading #cheer #practice #pride #strong #support #balance #hardwork #consistency #grind #northwest #southafrica #cronicillness #cysticfibrosis #cfwarrior #cflife #cysticfibrosisawareness #photography #photooftheday


1

🚵‍♂️Gracias al @eltallerdeasier por participar con nosotros en el Everesting Challenge!!!🔷️ El Taller de Asier en la calle Paraguay nº 1 cuida de nuestras bicis y nos las pone a punto!!🔷️ El próximo 21-julio estará en Peñacerrada para ayudar a Javier Prieto y su bici a poder continuar con la prueba al 100%! Asier, gracias por ese corazón tan grande, Arnasa Araba te manda mil Besos Salados ❤️❤️ y te desea el mayor de los éxitos a tu negocio.💎
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🚵‍♂️Eskerrik asko el taller de Asier gurekin parte hartzeagaitik Everesting Challenge erronkan!! 🔷️El taller de Asier Paraguay num 1 kalean aurki dezakezue, gure bizikletak zaindu eta konponduz!!🔷️ Hurrengo Uztailak 21ean Urizaharran egongo da Javier Prieto laguntzen, bere bizikleta zainduz erronka oso irten dadin. Eskerrik asko Asier bihotz hain haundi edukitzeagaitik❤️❤️, Arnasa Arabatik milaka musu gazi ematen dizikizugu!!💎
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🚵‍♂️Thank you to the Taller de Asier for participating with us during the Everesting Challenge.🔷️ The Taller de Asier in 1 Paraguay Street takes care of our bicycles. The next 21stJuly he will be in Peñacerrada to help Javier Prieto and his bicycle to be able to complete the challenge! 🔷️Asier, thank you very much for this big heart, ❤️❤️Arnasa Araba sends you one million of Salty Kissess and we wish you the best of the success in your business.💎
#fibrosisquistica #fq #arnasafighters #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle


3

Nachdem Sie mich am Dienstag beim b2run nicht haben starten lassen, kann ich am Samstag beim #mountainman noch einmal durch das Gelände wieseln.

Gelaufen wird die -S- Distanz mit ca. 23km und ca. 800HM. Meine angestrebte Zielzeit liegt bei 2:30h. Für mich Flachländer momentan sehr ambitioniert, aber nur an Herausforderung kann man wachsen.

#adidas #cfirl #laufwunder #trail #marathon #fitness #adidasrunning #runningismental #running #laufen #lifeisgood #instadaily #run #cflife #cflifestyle #runner #instarunner #hiking #trail #fit #fitnessaddict #runnerscommunity #competition #fitfam #healthy #lucky #trailrunning #garmin


1

Bueno hoy jueves hace una semana que me dieron de alta y una semana qe llevo poniendome el meropenem en casa asi que una semana ya superada, y a por los siguientes 8 dias que quedan! Vamos que yo puedo!!💪💪💪
Ahh como hoy he madrugado, hoy Dios me ayudará seguro, ademas me tocan pruebas de alergias con antibioticos y tiene que salir todo perfecto 🙌🙏💪a por el jueves se ha dicho!
#mivida #mividaconfq #fq #FQ #fqlife #cflife #cysticfybrosis #fibrosisquistica #FibrosisQuistica #antibiotico #iv #meropenem #matandobichos #superacion #motivacion #sepuede #yopuedocontodo #StayStrong #siemprepositiva #siemprefuertes #cambialasreglas


2

We are all settled in in Monterey, CA🙌 and it is breathtaking here! It’s nice to be back by the ocean but I have to tell you guys, I already miss being surrounded by mountains already😬 The great thing about it is that it’s not completely flat like Florida haha. We will be here for a few months and excited to show you guys around!
#rv #fulltimerv #rvlife #rvliving #rvlifestyle #traveling #california #ocean #wanderlust #explore #happycamper #vlogger #travelvlog #cysticfibrosis #cysticfibrosisawareness #cflife #meetthestroops #sixtyfiveapparel #motorcycle #klr650


26

Tonight God reminded me to BE STILL. As tomorrow approaches my anxiety runs high. I have my 3 month cystic fibrosis check up. I fill my mind with truth because God is in control of every aspect of my life. I am learning to trust in him, all his ways are good. I know I've come along way. Months ago I would lay awake all night worrying about my pfts, my results. (Generational sin) I know God created me in his image & I am wonderfully made. He also knew I have the strength to battle this not because of my strength BUT because of his STRENGTH ❤️
1 Peter 5:7
Cast all your anxiety on him because he cares for you.
#cysticfibrosis#cfawareness#generationsin#faith#devotions#truth#overcomeworry#cfwarrior#God#hope#overcomeanxiety#lungdisease#mediport#cflife#strength#positivemindset#cfadult#determined#fitnessjourney#trustingod🙏#cfadvocate#believe#breathe


2

Conquered the wainui water tower today. Havnt done that walk in iver 10 years. Beautiful view. Stopped 3 times tho so upwards from here. #wainuiomata #watertower #bestviewsinwellington #cflife #fucf #igotthis #cfwarrior #familywalk #dreamitbelieveitachieveit #30%lungs #cfwontholdmeback


3

Say hello to the California recipient of an AffloVest in Colton Legacy Foundation’s 50 AffloVests in 50 states project, Buster!

REPOST: @coltonslegacy
Yesterday, Colton invited 5-year old Buster to join him on the red carpet at the $50K Charity Challenge basketball game in Los Angeles. Then, he revealed that Buster is the Legacy Project recipient for California and presented his AffloVest. Buster's family is fighting hard for good health and research for a cure. We'll share more of his story soon!



#LegacyProject #AffloVest#LegacyDonationDrive#50KCharityChallenge


3

Double unders got me like...💥 Ziel bis Ende Juli: 20 (Milena) & 100 (Maurice) Double unders. So sieht man am Ende eines harten Trainingstages mal aus 💪🏼 #crossfit#crossfitopens#cflife#fitness#fitcouple#fitlife#fitspo#fitfam#healthylife#ropeskipping#doubleunders#goals#love#sport#workout#noexcuses#hereweare#reebok#workhard#shape


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Why would you stop when you can keep going? Sure hope that’s how I feel tomorrow! Getting the old legs ready for a *gasp* real workout tomorrow. I’m not nervous yet but I probably will be tonight when I try to sleep. Starting my evening #zen now. #run #running #runner #marathon #summerrunning #lnk #chicagomarathon #kayteruns #cflife #cffighter


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@team_boomer_usa July 2017 #CFWarrior, Connor, was diagnosed with #CF at the young age of 10 months. Running 5k’s and playing sports allows him to remain healthy in a fun, positive way. Keep up the good work Connor!
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#cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cffighter #cfirl #cfawareness  #cfstruggles #breathe #doublelungtransplant #chronicillness #lungs #cfsucks #cysticfibrosisawareness #findacure #cflife #65roses #curecf #organdonation #raredisease


1

🔊Chicxs! Os esperamos a todos en la Sociedad Bombalatxi este sábado para animar a Javier Prieto en su Everesting Challenge!!!➕ Además a partir de las 12:30 hinchables para los txikis, música y pintxopote!!!!➕
Sociedad Bombalatxi!! ➡️Menudo regalo nos habéis hecho cediéndonos vuestro espacio para esto!!! ❤️❤️Mil gracias amigos.
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🔊Neska-mutilak! Bombalatxi elkartean itxaroten zaituztegu larunbat honetan Javier Prieto bere erronkan animatzeko!!! ➕Gainera 12:30 tik aurrera gaztelu puzgarria edukiko dugu txikentzat, musika eta pintxopotea !!!➕
Bombalatxi elkartea!!!➡️ Zelako opatia egin diguzuen zuen lekua utziz!! Eskerrik asko lagunak!!❤️❤️
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🔊Guys! We will be waiting for you in the Sociedad Bombalatxi this Saturday to cheer up Javier Prieto during the Everesting Challenge!! ➕Additionally, from 12:30 pm games for kids, music and pintxopote!!➕
Sociedad Bombalatxi! ➡️So spectacular gift you have made us donating your space for this! Thank you very much folks.❤️❤️
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports #bicycle


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#Repost @cfcanada
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"Being able to work alongside my parents at the CF walk. An event my family has loved for years. Growing older with cystic fibrosis also means that I get to share my story with new parents of kids with CF. Reassuring them that unconditional love is the only thing you need when you're on this journey ❤️" - Kristina⠀

#growingold #growingup #aging #parents #familytime #shareyourstory #CFCanadaWalk #cflife #cysticfibrosis #aworldwithoutCF #CFlife #healthcare #spoonie #chronicillness


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Struggled this AM in my workout...hope to get it together for round 2️⃣ this evening 😬. Apparently I was NOT a badass today 🤣
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🏋️️‍♀️ #shortgirls #fitspo #run #squats #trailrunner #gymrat #trailrun #gym #isquat #barbell #wod #running #runner #fitness #runnergirl #crossfitgirls #crossfit #crossfitter #cfl1 #cflife #girlswholift #fitmom #momswholift #fitgirl #girlythings #girlygirl #curvygirl #curvyfit #curvy #womensfitness #fitspo #barbell


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REPOST: @coltonslegacy
This cowgirl #cfwarrior is not only good at stomping her boots on the farm, she's a pro at stomping out CF's control on her life! Strong. Courageous. Fiesty. Steeley Jo! Read more about Steeley Jo on our website! •

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#warriorwednesday #coltonunderwoodlegacyfoundation #cowgirl #stompcf


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"Being able to work alongside my parents at the CF walk. An event my family has loved for years. Growing older with cystic fibrosis also means that I get to share my story with new parents of kids with CF. Reassuring them that unconditional love is the only thing you need when you're on this journey ❤️" - Kristina⠀

#growingold #growingup #aging #parents #familytime #shareyourstory #CFCanadaWalk #cflife #cysticfibrosis #aworldwithoutCF #CFlife #healthcare #spoonie #chronicillness


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Nos hacemos eco de esta noticia de nuestrxs amigxs de @arnasaaraba
haciendoles llegar todo nuestro apoyo y suerte en ese reto tan emocionante y duro de Javier Prieto. Os animamos a todxs a participar y apoyar algo tan solidario con la fibrosis quistica.
Eskerrik asko !! 💪✌️👏
En la web de @fqeuskadi encontrareis amplia información de todo el reto del Everesting challenge del 21 de Julio.
#Repost @arnasaaraba (@get_repost)
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✔️ Diario de Noticias de Álava! Otro gran aliado de Arnasa Araba!!!➡️ Son ellos los que nos proporcionarán los hinchables, ayudando en su montaje y desmontaje! Un trabajo brillante que le dará un toque muy especial al 21-julio, haciendo que los txikis también sean #arnasafighters!!! 👶Saltos y Saltos que llenarán de aliento a los Besos Salados!
✔️Además nos está publicitando en su periódico! Gracias Diario de Noticias! 🌹💫Ver link en nuestra bio⬆️⬆️No sabéis todo lo que nos estáis ayudando! Besos Salados!😘😘
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✔️Diario de Noticias de Alava!!! Gure aliatu berezia!!!➡️ Beraiek ematen digute aukera gaztelu puzgarria jarriz! Puntu berezia emango dio egunari gure txikieak erronkan ere parte har dezaten, beraiek ere #arnasafighters direlako!!! 👶Jauzi eta Jauziz musu gaziei Arnasa ematen!!
✅Gainera egunkarian erronkaren iragarkia ateratzen da! Eskerrik asko Diario de Noticias!! 🌹💫Betidanik pilo lagundu diguzue! Musu Gazi potoloak!!😘😘
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✅Diario de Noticias de Álava!!➡️ Another good friend of us! They will borrow us the game for the kids on Saturday, also with the assembly and disassembly. A brilliant job and a brilliant touch for the 21st July, the little ones can also be #arnasafighters jumping and jumpling!!👶
✅More over, we are on the pages of the newspaper!! Thanks million Diario de Noticias!🌹💫 You are really helping us!! Salty Kisses!😘
#fibrosisquistica #fq #dandoalientoalosbesossalados #arnasaaraba #ORKAMBIya #besossalados #deporte #arnasafigthers #everestingchallenge #bicicleta
#fibrosikistikoa #FK #musugazieiarnasaematen #musugaziak #ORKAMBIorain #kirola
#cysticfibrosis #CF #blowingencouragementtosaltykisses #saltykisses #CFlife #cysticfibrosisawareness #cfawareness #ORKAMBItnow #cfwarrior #sports


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⭐️Last CF clinic appointment as a ONE year old ⭐️ 26 lbs 3 oz and 32 in long putting her in the 🥁 92nd percentile for height to weight 🎉 Bristol saw her normal CF NP today, the dietician, and respiratory therapy. RT was amazed she’s tolerating 15 HZ on her vest. Dietician was amazed at her growth curve. NP said not a thing to change. Long story short, everything’s perfect! 👌🏻 Shout out to Jesus who is the real captain making it happen. Peace out CF clinic, see ya when I’m two ✌🏻 .
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#cysticfibrosiswarrior #cysticfibrosisfighter #cffighter #cfwarrior #cf #cflife #cfirl #puppyobsessed #books #reading #cftoddler #cysticfibrosistoddler #cfclinic #clinicday #cfclinic #cfclinicday #drapt #medicine #doctorsappointment #raredisease #chronicillnesswarrior #df508 #ddf508 #deltaf508 #meconiumileus #survivor #warriorprincess #cfwarriorprincess


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🔊 🙋🏼 heut sind die jungs von @nucao_ zu besuch und haben ihr neues veganes protein vorgestellt 🥛 fazit von unseren zwei mädels @olga.beitler und @julianebeitler : super lecker und #gesund 😉🤗 vielen dank für den besuch @nucao_ 🙂 wir sind auf den geschmack gekommen!


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Had a 💥BLAST in NYC🗽
Couldn’t pass up the chance for a fun photo op📸
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Living with #cysticfibrosis brings ALOT of challenges BUT it will never stop me from living life! I’m just like any other kid. I can go places, experience new and exciting things, make memories with all of the awesome places this world has to offer. Sometimes, there are situations where we are more cautious though. We do A TON of hand washing (thanks @purellbrand hand sanitizer🤟) steering clear of peeps that are looking sick or coughing a bunch and keeping 💦hydrated on super hot days☀️(thanks @gatorade 🍊)
It takes a little more pre-planning before we head out places...but we’re pretty much pros now 😎
Can’t wait to see where my next adventure is!✈️🏖️
#cflife #chasingsunshine #dkg #curecf #cfsucks #nyc #timesquare #ellensstardustdiner #carmines #bronxzoo #museumofamericanhistory #mylittlewarrior #bekind


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We've had quite the week. Isabelle has had a GJ tube placed, and feedings have started! Izzy just doesnt gain weight, shes my child, so shes picky. PICKY. Were busy, our stress, schedule and demands are changing, but hopefully so is our quality of life! Im tired yaall, EXHAUSTED really, but were not stopping here. (And eventually my schedule will allow crafting time, right?)
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#65roses #craftshop #ourcflife #cfawarness #diy #doityourself #diyinsta #diyfarmhouse #dreamhome #makedopestuff #cyster #tubies #rookietubies #feedingtubes #curecf #cysticfibrosis #NCH #cfmama #cfcyster #saltycyster #newnormal #cflife #cfparents #craftingcures #craftingforawarness #instadiy #instaawarness #instacyster #istheretimetobreathe


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44.2kg! Only 0.8 off my target weight! Go Nena Button! (Also lmao at how tanned my arm is compared to my belly 😂) #99RedBalloons #Cflife #CfAware


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Most expensive purchase on holidays yet🙈 lost tablets £50 that last 4 days 😳 we don’t no how well off we r with the NHS 😉 #cf #whenyouneedtabletstoeat #creon #cflife #thingsmoneycantbuy #weneedorkambi #whenyounevergetabreak


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I met a mom of two daughters with CF (17 and 12) and one son without (15). I asked her how she copes with the difficult stories and parts of this disease and she looked at me with pure determination and conviction and said, “I choose to live out of a place of hope. I believe my girls will live a long and beautiful life. I believe a medicine will be found to change their health for good. I believe a cure is on the way. That’s where I live my life from day to day. I can’t live my life out fear. It’s not good for me and it does nothing for my children. I choose to live from a place of hope. It’s the best thing I can do for my family.” 💙 I am so thankful I heard that just two weeks into our CF journey. I felt like she gave me permission to protect my hope and cherish it. Fear isn’t a bad thing, it’s so natural and human to be afraid from time to time. But I don’t want to live my life based on fear and I don’t want Caroline to either. #morethancf #choosejoy #gratitude #hope #choosehope #cfcureforcaroline #momlife #cflife #cysticfibrosis #cfbaby #cysticfibrosisawareness #cysticfibrosisfighter #cf #cfcureforcaroline #teamcaroline #geneticdisease #torticollis #exclusivelypumping #choosehope #hope #curecf


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