#phaware

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DAY167..... I got lost on day158..... let’s try this again shall we, with less pain, less fatigue, and less breathlessness 🤣yes, that is funny but we can try #onebreathatatime #pah #phaware #systemicsclerosis #scleroderma #heartfailuresucks #mentalhealth #pain #chronicfatigue #autoimmune #riseagain #
Dagen derpå og gårsdagens skuffelse over å ikke nå toppen har lagt seg litt. Nå klarer jeg å se den prestasjonen det er at jeg klarte å bestige nesten 600 høydemeter, jeg som for bare en stund siden måtte ta pause etter å gå en etasje i trapp. ----------------------------------------------------------------------------------------------------------------------- Idag ser jeg tilbake på en tøff men fantastisk fin tur, en tur med vakker natur og en utrolig flott utsikt 😍😍 ---------------------------------------------------------------------------------------------------------------------- Dette var testen for å sjekke formen i forhold til mitt store mål og gå Gaustatoppen. Jeg tenkte nok underveis at det ikke var mulig, men jeg vet nå at hadde jeg ikke måtte spare energi for å komme meg ned igjen, så hadde jeg klart denne toppen også, og på Gaustatoppen kan man eventuelt bruke alle krefter opp, og ta banen ned igjen 👍Jeg har troa, og med tro kommer man langt 🤩😉 ------------------------------------------------------------------------------------------------------------------- #elgåhogna #engerdal #femundsmarka #topptur #fjelltur #fjellet #norsknatur #norsknaturpåsittbeste #pulmonalhypertensjon #pulmonalhypertensjonnorge #pulmonalarteriellhypertensjon #phaware #phawareness
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IV or Subq PAH Patients & Caregivers. Take this short survey on ways to improve current IV pump solutions to enhance the user experience and get a 25% discount code for the @phaware store as a thank you! Redeem by 9/17/18 #phaware
Thank you to Beyond the Diagnosis and artist Nan Kruzik for adding Lucas Van Wormer to your #RareDisease Art Exhibit #BeyondTheDiagnosis So great to have #PulmonaryHypertension in the mix! Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases. #phaware Patricia Elaine Weltin
Coolest news of the day! Southwest Airlines now offers iHeartRadio on all domestic flights. Now you can listen to I'm Aware That I'm Rare: the phaware podcast via iHeartRadio! Time to get #RareInTheAir #phaware 💜💙💚🧡❤️ @southwestair @iheartradio
#Repost @muslimsinwanderlust with @get_repost ・・・ We met Zain Bhikha on the last day of our trip. His assistant was kind enough to make an appointment for us with him. I grew up on his nasheeds since I was 10 years old. They're like an old friend to me - I fall in and out of contact. . . Since we met him, I have been listening to his nasheeds with new ears. His studio is non-profit (so anything you buy from them is basically charity!!), he has a full time job and he volunteers in the community. He has had deaths in his family due to pulmonary hypertension. He is now a grandfather. (Remember Rashid Bhikha singing My Mother? He is now a father himself Mashaallah!) . . He gave us one beautiful advice: to treat people, especially the youth, without judgement. Life is so hard for kids growing up, they can do without our judgement while they try to make it. He also reminded us to always remember that no matter what we do, we will all end up in the same way - we will all pass from this world and return to our Lord. So, to see everything through that lens when we do anything. . . May Allah give baraqah in his work. . . . @zainbhikhaofficial . . . #zainbhikha #rollmodel #phaware #nasheed #naseeha #childhood_memories #southafrica #Johannesburg #muslimgirlscantravel #muslimtravelers #thetravelinghijabi #wearetravelmums #hijabigirl #hijabitraveller #hijablife #dadsofinstagram #dadsanddaughters #babycantravel #babytraveler #familyblog #familytravel #throwback #lastweektonight
#Repost @pahssc (@get_repost ) ・・・ Doğum gününüz kutlu olsun Dr. Erdal TAŞÇI. Hayatımıza mucizeler katan sağlık çalışanlarına teşekkür eder, sağlıkta ŞİDDETİ kınıyoruz. Sağlık çalışanlarına SAHİP çıkalım. Hep birlikte daha güzel yarınlara! #Skleroderma #showyourrare from Turkey! #PahSsc #PulmonerArteriyelHipertansiyon #PulmonerHipertansiyon #PHAware #Scleroderma #Eisenmenger #EisenmengerSendromu #EisenmengerSyndrome #kteph #SistemikSkleroz #SystemicSclerosis #AkciğerNakli #KalpAkciğerNakli #Nadirhastaliklar #NadirHastalıklarGünü #RareDisease #PulmonaryArterialHypertension #TurkeyRareDisease #OrganBağışı #OrganNakli #OrganBagisindaBelcikaModeli #OrganBağışındaBelçikaModeli #Hepbirliktedahagüzelyarınlara #WorldPHDay #PresumedConsentOrganDonation #Akcigernakli #KalpAkcigerNakli Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Iban: TR520004600476888000041558 Tel: +90 555 024 14 80 Mail: pahssc@gmail.com @PahSscDernegi Organ Bağışında Belçika Modeli Uygulaması için detaylı bilgiye https://www.facebook.com/OrganBagisindaBelcikaModeli/ erişebilirsiniz.
Doğum gününüz kutlu olsun Dr. Erdal TAŞÇI. Hayatımıza mucizeler katan sağlık çalışanlarına teşekkür eder, sağlıkta ŞİDDETİ kınıyoruz. Sağlık çalışanlarına SAHİP çıkalım. Hep birlikte daha güzel yarınlara! #Skleroderma #showyourrare from Turkey! #PahSsc #PulmonerArteriyelHipertansiyon #PulmonerHipertansiyon #PHAware #Scleroderma #Eisenmenger #EisenmengerSendromu #EisenmengerSyndrome #kteph #SistemikSkleroz #SystemicSclerosis #AkciğerNakli #KalpAkciğerNakli #Nadirhastaliklar #NadirHastalıklarGünü #RareDisease #PulmonaryArterialHypertension #TurkeyRareDisease #OrganBağışı #OrganNakli #OrganBagisindaBelcikaModeli #OrganBağışındaBelçikaModeli #Hepbirliktedahagüzelyarınlara #WorldPHDay #WorldSclerodermaDay #PresumedConsentOrganDonation #Akcigernakli #KalpAkcigerNakli @drerdaltasci Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Iban: TR520004600476888000041558 Tel: +90 555 024 14 80 Mail: pahssc@gmail.com @PahSscDernegi Organ Bağışında Belçika Modeli Uygulaması için detaylı bilgiye https://www.facebook.com/OrganBagisindaBelcikaModeli/ erişebilirsiniz.
We met Zain Bhikha on the last day of our trip. His assistant was kind enough to make an appointment for us with him. I grew up on his nasheeds since I was 10 years old. They're like an old friend to me - I fall in and out of contact. . . Since we met him, I have been listening to his nasheeds with new ears. His studio is non-profit (so anything you buy from them is basically charity!!), he has a full time job and he volunteers in the community. He has had deaths in his family due to pulmonary hypertension. He is now a grandfather. (Remember Rashid Bhikha singing My Mother? He is now a father himself Mashaallah!) . . He gave us one beautiful advice: to treat people, especially the youth, without judgement. Life is so hard for kids growing up, they can do without our judgement while they try to make it. He also reminded us to always remember that no matter what we do, we will all end up in the same way - we will all pass from this world and return to our Lord. So, to see everything through that lens when we do anything. . . May Allah give baraqah in his work. . . . @zainbhikhaofficial . . . #zainbhikha #rollmodel #phaware #nasheed #naseeha #childhood_memories #southafrica #Johannesburg #muslimgirlscantravel #muslimtravelers #thetravelinghijabi #wearetravelmums #hijabigirl #hijabitraveller #hijablife #dadsofinstagram #dadsanddaughters #babycantravel #babytraveler #familyblog #familytravel #throwback #lastweektonight
Waiting for the plane to arrive 😊 I'm sleepy but wired on love! Counting down the seconds until my munchkins are on the ground! #waitingimpatiently #waiting #spiritairlines #flightdelay #cantwait #raredisease #pulmonaryhypertension #phaware #ph
8 years, 96 months, 2920 days, 70080 hours and 252288000 seconds of my life with Pulmonary Hypertension. Today is 8 years as a #phighter ... I was told to expect around 2-3 years. I am thankful for borrowed time. I am thankful that God knows every second I will breathe and has never left my side. He is the God of all my days, my good days, my bad days and all the in-betweens! Thank you Lord for keeping me strong even when I feel like giving up. Seasons change, You stay the same, You are God of all my days. #phaware #oxygenforlife #ivpump #Godofallmydays ❤️
DAY 158 #365daychallenge It’s difficult to have positive days all the time especially when the mental is constantly struggling with the physical .... but it’s okay to have down days, life can really be unfair sometimes 🤦🏻‍♀️ #onebreathatatime #pah #phaware #systemicsclerosis #scleroderma #gastroparesis #sjogrens #heartfailuresucks #mentalhealth #anxiety #melbourne #repost from @brightgram
POCKETS!
Zach & Zachary
Samantha Blaire Cutler (Dear Evan Hansen, Billy Elliot) & Katie Micha (Gypsy, Billy Elliot, How the Grinch Stole Christmas) at breathless 2018
Como es costumbre nos reunimos los viernes a nuestro talerr de pintura, adicionalmente realizamos una Jornada para compartir experiencias de los pacientes que fuimos a la #PHACONFERENCE 2108 en Orlando, con todos nuestros compañeros, y aunque lo que pudimos mostrar fue apenas una pincelada de todo el aprendizaje, fue un gusto poder trasmitir esa extraordinaria experiencia a los demás. Pacientes de #FundacionFundem , @ #HAP , #EM , #PHAWARE #PHAASSOCIATION , AbbySicklesPha, Michael KnaapenPha, Paula Cabral García TeresaMuller, FundacionFundem, Azalea Candelaria -Pha, PhaStaff, Frank Cann -pha, Lori Lopez Pha
My newest column post for Recharged and Rewired is up today. The link to my column is in my bio. It's about pain and the physical and mental struggle that comes along with it. I included this quote from #greysanatomy . 💜💜💜#phnews #bionews #phaware
It's two years today since my mom and bro entered the Great Beyond together. Not a day goes by that Christopher and I don't think of them. I hope they are happy and at peace. We love you guys, always. . #weightwatchers #weightloss #betterhealth #letsdothis #pulmonaryhypertension #livingwithPH #phaware #wwsupport #wwsmartpoints #weightlossjourney #weightlossmotivation #beyondthescale #wwcommunity #writer #writersofig #writersofinstagram #fattofit #blogger #roadtoonederland #journeytoonederland #nyualumni #nyu #nyusps #nyusteinhardt #ripmom #ripbigbro
This Stonehenge inspired replica I stumbled upon years ago is now a main attraction for the small town of Ingram, Texas. It all started w a limestone rock that was gifted to the creator. He was later pondering grander possibilities, and this happened! It’s a must see, especially at sunset. Stone Henge II• Ingram, Tx #ingram #ingramtx #stonehengeselfie #stonehengerocks #texastreasures #texashillcountry #phtraveler #theohtraveler #phaware #phawareness #pulmonaryhypertension #pulmonaryhypertensionawareness #travel #texastravel #adventure #adventuretime #explore #exploretexas
#Repost @round_thirteen13 with @get_repost ・・・ Never ever Quit! Pain is just weakness leaving the body. • • • • • #struggling #striving #Ph #PulmonaryHypertension #round13 #raisingawareness #phaware #phwarrior Please follow the page and show your support.
Never ever Quit! Pain is just weakness leaving the body. • • • • • #struggling #striving #Ph #PulmonaryHypertension #round13 #raisingawareness #phaware #phwarrior
Death leaves a heart ache no one can heal love leaves a Memory no one can steal. Your wings where ready but we where not. You Blessed us with eachother as siblings. Life has never been easy for any of us but one thing is for sure you raised strong individuals and we have eachother. We miss you moma bear 637 #lakalakastrong #family #PHuckPh #phaware #TeamSylvia #ourangel
Kad je cilj jasan...korak je veoma lagan ❤ Inspirisan nadom @nikola.bojovic #inspiredbyhopeteam #inpiredbyhope #phserbia #phaeurope #phaware
Liv (left) & Maia (right) perform “For Good” from the broadway musical, Wicked, in honor of Chloe Rand. Because I knew you, I have been changed for good.
Today we celebrate the birth of Maia Katz, a long time friend of the Rand Family, and a major player on the breathless team. We love you so much and are incredibly lucky to have you in our lives! Happy Birthday Maia!
New Zealand. Australia. New York. Ireland. Marseille. Not bad for a #spoonie ...❤️ to all who helped me make it 🙌🏻🌊📷✈️ Every trip came with its own longing for the safety of home, and bed...but it feels good to finally have a worthy reason to feel completely exhausted! #outmycomfortzone #feelthefear #noteasybutworthit #luckygirl #travel #invisibleillness #phaware #pulmonaryhypertension #chd #arrythmia #ilovemynhs #anxiousbutcourageous #anythingtodeclare 💊💊💊 #choosegrowth 👌🏼
The power of a PH Warrior. People with chronic illness know how binding their pills are, how tethering that oxygen or central line is. I think @heavyheavy.lowlo captures it beautifully with her vision. So happy to have gotten the pleasure of working with her again! #phwarrior #pulmonaryhypertension #phaware #pills #oxygen #o2
Tomorrow marks a year since I started my Weight Watchers journey. I readily admit that I fell off (and stayed off) the wagon in February and am only now starting to work my way back on. I am happy to report that I've managed to maintain a 41 pound loss but I gotta lose much, much more. So, I'm going to get back to posting my progress again. It helps to keep me honest (and motivated)! Wish me luck! . Photo on the left was taken in April 2017 and the right photo is from my trip to London this June. . #weightwatchers #weightloss #betterhealth #letsdothis #pulmonaryhypertension #livingwithPH #phaware #wwsupport #wwsmartpoints #weightlossjourney #weightlossmotivation #beyondthescale #wwcommunity #writer #writersofig #writersofinstagram #fattofit #blogger #roadtoonederland #journeytoonederland #nyualumni #nyu #nyusps #nyusteinhardt
My beautiful baby girl. Today is all about Sage. How I wish I could just hold her and kiss her head one more time. She was the strongest human I know and such a little warrior. I just can’t get enough of his video and how happy she was here. 🌿Sage Anise🌿 . . . . . . #phlife #missmymonkey #ilovemymonkey #sage #scissorsforsage #heart2cureph #pulmonaryhypertension #pha #phaware #phighter #missmybaby #babiesofchicago #chicagobabies #scissorssage
Yakima Valley sunset thanks wildfire smoke. Sucky reason for the beautiful colors, but beautiful. #yakimavalley #sunset #washingtoninstagram #amazing #colorfulWA #nofilter #getoutside #wildfire #pulmonaryhypertension #phaware #breathe
Here we go, good people! I said I was going to teach myself how to dye my own yarn and, viola! From pot to project, these photos document my first foray into this new, fun (and slightly messy) adventure. Stay tuned for future projects! . . #weightwatchers #weightloss #betterhealth #letsdothis #pulmonaryhypertension #livingwithPH #phaware #wwsupport #weightlossjourney #weightlossmotivation #wwcommunity #writer #writersofinstagram #fattofit #journeytoonederland #nyualumni #nyu #nyusps #nyusteinhardt #ilovemynewhome #crochet #ourmakerlife #handmade #crochetersofinstagram #knittersofinstagram #makersgonnamake #yarnaddict #knitting #craftastherapy #crocheting
The things we fear the most have already happened to us. You’ve already survived it. You’ve already conquered that chapter in your life. You now have experience in knowing what you are capable of mastering. It was a lesson not a sentence. The only way to go from here is forward! #photosbysophia #leaveitinthepast #moveforward #wisdom #acceptance #resilience #peace #namaste #letitgo #motivationalquotes #strength #chronicinspiration #spoonielife #phaware #phawareness #phwarrior #phwarrior 💜
DAY 148 #365daychallenge ... ain’t that the truth 🤦🏻‍♀️ #grateful ❤️❤️ #onebreathatatime #phaware #systemicsclerosis #365daysofhealing @the.wandering.peacock #Repost @the.wandering.peacock ・・・ 💙🙏🏻Happy Monday🙏🏻💙 Have a fabulous week xo #newlambtonvillage #monday #gratitude #blessed #exhale
My buddy hep and I part ways again tonight. Whilst I will enjoy the freedom of not wheeling him round with me, I am not the first person treated by my doctors to wish this continuous infusion could be a permanent thing like insulin or the pumps some PH patients have. And I am not the first patient my doctors have wished they could strap it to and send them on their way either! So, if you are a pharmacist and you are reading this, I know, I know, you gave us LWM heparin.... But we would love this version as outpatients too!!!!! #aps #antiphospholipidsyndrome #stoptheclot #PHighter #PHaware #CTEPH #pe #dvt #myfriendhep #hepaWIN #callingallpharmacists #help
Things to do at Myrtle Beach 🏝 •Ripley Believe it or Not •Neón Skywheel •Landshark Bar n Grill •Mini Golf •Visit the boardwalk •Rent a moped •Shop The Gay Dolphin •Ride the thrill rides •Visit Wonderworks •Visit Broadway at the beach (👌🏼) And on and on. You could stay here at least 3 days and never run out of new things to do and try! I always stay at La Quinta Inn and suites •Myrtle Beach, South Carolina 👉🏼During this visit I was on Inhaled Tyvaso. This PH medicine allowed me the most freedom & side effect free lifestyle ever! #myrtlebeach #southcarolina #visitmyrtlebeach #boardwalks #ripleysbelieveitornot #broadwayatthebeach #wonderworks #skywheel #skywheelmyrtlebeach #southcarolinabeaches #phtraveler #thephtraveler #phaware #phawareness #tyvaso #pulmonaryhypertension #pulmonaryhypertensionawareness #chronicallycool #chroniclife #spoonie #adventure #adventuretime #beach #beachlife #beachesbecrazy
As I watched the sunset from the cliff with my O2 I saw two people down on the beach doing things I love and that I wish I could have also been doing. Photography and yoga are two of my passions but I have been limited in both because of being dependent on oxygen. But this is why I’m here in San Diego... to hopefully have a surgery that will allow me to breathe again, to live again, to do all those things I love and to do so much more. Seeing these people was a powerful reminder of why I’m here 💕💕💕#chronicillness #cteph #ptesurgery #sandiego #thejourney #oxygenlife #phaware #pulmonaryhypertension #aps #imnotdoneyet #sanantoniophotographer #sanantonioyoga
DAY 147 #365daychallenge ❤️❤️❤️❤️❤️❤️❤️Could not be happier right now ! Right at this moment !!!!!!!!!decided to go outside for a little walk (very little)to the back yard, as it’s been months, and what a surprise was waiting for me !!!!! My first ever cauliflower 😍😍😍😍😍 so I pulled the whole thing out 🤦🏻‍♀️ I must be getting stronger 💪💪🙊🙊🙊 and quickly (🤣) rushed inside to take a pic and post 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻 #tinysteps #onebreathatatime #keepmovingforward #honouryourvalues #liveitlikeyoubelieveit #phaware #pah #systemicsclerosis #homegrown #growyourfood #cauliflower #vegiegarden #melbourne #gardening #yayme
Zagrljaj za sve PH borce od Maksima! Kad porastem biću najbolji sportista i biću deo Inspired hope tima ❤❤❤ #inspiredbyhopeteam #phserbia #plucnahipertenzija #sport #uzdravomteluzdravduh #phaware #getbreathlessforph
My newest column post for Recharged and Rewired (link is in my bio). It's about how having PTSD led me to experience avoidance of hospitals. Avoiding hospitals and appointments has always felt like a good idea at the time, but it never is the best way to deal with fear. #chdaware #phaware #mentalhealth
But the greatest present of all was given to me long ago...
Sure it’s nice to open a gift that’s tied up with a perfect bow...
“Doesn’t matter where we are, if you’re there with me. Cause when we’re together, it’s my favorite place to be...” - Anna & Elsa! Ava Rand and Liv Rand performed “When We’re Together” from Olaf’s Frozen Adventure, the short premiering before the new Disney Pixar film, Coco, at breathless 2018. This was the first time these sisters performed a duet together at Sardis!
Behind a successful man is a strong women... . . . Behind a STRONG WOMEN.... Is a man who watch out for any dangers coming to her.... 😜 . . . (P/S: Can see my man @azarico_bt at the back watching if dangers coming? 😂😂😂😂😂) #leenastrong #agelessleena #healthiswealth #sickisbiznes #phaware #phigter #pulmonaryarterialhypertension #scleroderma #sclerowarriorsg #sclerodermawarrior #positivevibes #empowerment
Knit and crochet projects are like potato chips: you can't have just one. I've started working on my Christmas gifts already; I'm getting too old to do that whole "stay up all night on Christmas Eve to finish gifts" thing. 😋 Shawls are my jam this year. (Yeah, yeah, who am I kidding - any excuse to play with yarn!) 😆
So we say, HAPPY TRAILS to you, Maria! We love and adore your spirit and talent! Thank you for all you do!
This week is @mariarosebriggs last week at #hellodolly and we’re sure she’s on to grand new adventures! We can’t wait to see all of the amazing things you do!
APPRECIATION POST: @mariarosebriggs from broadway’s @hellodollybway @frozenbroadway & @catsbroadway joined the breathless team this year and lit up the stage with her beauty and grace. We love you, Maria!
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