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I'm laying in bed thinking about my future as I have so many nights before. Only moments ago waking up to Bryan peering over me while my body trembled beyond my own control. Immediately my eyes meet his and my body throws itself into a sitting position followed by several minutes of dry heaving, back pulling, muscle aching, and joint burning. My body sometimes hates me for the extreme measures I put it through in order to treat my numerous diseases; especially when it's endured almost a week straight of 3am vomiting and low oxygenation combined with even lower red blood cells. I have to admit the last week I have been too tired to write, too fatigue to post regularly on social media, and too overexerted to even process most of my emotions that this journey pushes into my head. It's hard for the outside world to see the chaos as I've become a professional at hiding my illness to those who don't see all the "behind the scenes" moments. It's been difficult but it's also been filled with glorious hours of engagement party planning and growing more bonded to the people who help me survive. After all of the noise from the last 24hours this morning I was spontaneously blessed with energy and excitement for an afternoon of engagement photos. I am so grateful I have my own angel in heaven who selflessly gave me his/her lungs in order to have experiences like today. We hopped location to location from @saintfrankcoffee, to #BakerBeach, the @golden_gate_bridge, #crissyfield, and lastly our good friend's rooftop. ••@kaszphotocreative Thank you so much for making today the highlight at the end of a strugglebus week! ❤️ •• And to the love of my life, @takayama.10 thank you for always waking up to heat up beans, bring me nausea meds, rub my back, feed me sugar, and tell me you love me despite the 5am work wakeup calls. I love you #CaleighSaysBryDo #LoveWins #KaszPhotoCreativeForTheWin #SanFrancisco #SoulMate #engagementphotos #DonateLife #Fight2Breathe #CysticFibrosis #Diabetes #CureCF #CFAwareness #UNOS #recycleyourself #doublelungtransplant #ThanksForTheRooftopKessler

do i caption this 'Mom Life' or 'CF Life'?
either way, i love this life.
——
thanks @locksbylani for doing a 'house call' to help keep me away from the chemical smell of the salon 😘
#cfirl #cysticfibrosis #momswithcf

Back at my old clinic in Denver🏔! Just checking in with my Doctor and getting 💉labs. Feels weird to walk through the halls without Pablo my old o2 concentrator on my shoulder. .
.
#lungstoryshort #cysticfibrosis #cfawareness #65roses #curecf #newlungs #doublelungtransplant #transplant #organdonation #cff #posttransplant #clinic #denver

When your enzymes finally come over 3 weeks after you ordered them even tho you paid for next day shipping 🤦🏻‍♀️|| Seriously tho it's been beyond frustrating trying to get my 3 month supply of enzymes this time around after having to switch pharmacies about 6 months ago. This is a problem I've never had in the past when it comes to my enzymes & if I did not continue to call on almost a daily basis for almost a month straight I don't think I ever would have successfully received my enzymes, which are 100% needed for me to eat any & all food. Thankfully CVS FINALLY got it right & I came home to find these at my doorstep. I was officially down to my last bottle & in a few days I would have been in a situation where I wouldn't have had any enzymes left to eat any of the meals my body needs. Considering I initially ordered these almost a month ago giving the pharmacy plenty of time to get things in order, this is just not acceptable care in my book & it makes me dread the process of getting them in another 3 months.

A lot goes into managing a chronic health condition aside from the hours of treatments & medications I take on a daily basis. A lot of my down time is filled with calling doctors, pharmacies, insurance companies, etc. which means it makes all the difference dealing with ppl & companies that just get it & advocate for the patient.

I commend all of you living with an acute or chronic health condition & all that you balance on a daily basis💜

❌⭕️❌⭕️Lea

"Do not despise these small beginnings, for the Lord rejoices to see the work begin.” Zechariah 4:10. 🌻
Three years ago, I was going on nine months of being in the hospital. I had occasionally been able to go to the courtyard to sit for a few minutes, but it was a rare occurrence. Some days my hospital room felt like a jail cell, and I missed the fresh air so much. On this day my o2 needs had improved so that I could use regular supplemental o2, not high-flow oxygen, as long as I was seated, so John got permission to take me on a short adventure. He wheeled me through the main hospital to get to the children's hospital, (which was much more bright and cheerful), with a quick stop at Starbucks, and it was the best outing I had been on in months. I still keep these times in mind when I go on my walks, and I never take for granted the gift of being able to get up and go out whenever I want, without pain or fatigue. Today I jogged two and a half miles in the gorgeous sunshine, while taking big, beautiful, deep breaths. I know I talk about my new lungs a lot, but if I hadn't been blessed with this gift, I wouldn't be here today. I just want everyone to know how much difference you can make in someone's life by being an organ donor. 💕♻️ #cysticfibrosis #doublelungtransplant #cfawareness #organdonation #donatelife #cfirl #lungtransplant #survivor

Life is so beautifully simple on the trail. This was home for the evening on my 40th day on trail, somewhere in Virginia. #breathtaking4cf #adventureheroes

One year ago today, we officially opened our #cysticfibrosis research facility in Lexington, Mass. Designed to identify and test for potential therapies, the lab has spearheaded a new initiative to collect and grow cells from people with CF who have nonsense and rare mutations. These cells will be critical for identifying treatments for rare mutations, and will be made available to other researchers to expedite the development of new drugs. #CFresearch #CFawareness

It's a beautiful thing to have lungs that allow you to breathe air and legs that allow you to climb mountains, and It's a shame that sometimes we don't realize that that's enough
💜
Today I was challenged to do the #chroniclovechallenge by @chronicloveclub to write down 5 things I am grateful for. Although, I do have way more than 5 things to be grateful for, which isn't a bad thing 😊
1. My Support System: Family, Friends, Boyfriend, @taylorswift @taylornation, ect.
2. My donor ♻️ and medical professionals
3. My kitty cat 🐱
4. Breathing
5. To have a house to live in 🏡

I challenge @leaf7790 @kelseysleek @wendycaroline91 @rachiesleek @hotpinkcheryl @mauliolamelissa @haileehigley @caleighdoingcaleighthings @lung_story_short @ashleerae83 @ashleesleek @avolz001 to list 5 things you're grateful for 💜 make sure to hashtag #chroniclovechallenge 😘




#TiffGotLungs #lungs4tiff #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cfirl #saltycysters #youtube #cyster #fibro #love #laugh #hope #donatelife #organdonation #dream #donor #65roses #recycleyourself #taylorswift #thankful #justbreathe #spoonie #chronicloveclub #Grateful

What's better than drinking wine on the couch? ... drinking wine on the water 🍷 #corny but true! LOCAL PEEPS: Come hang with me this Friday, Sept. 22nd at Wine on the Water from 6:30 to 10:00pm at the Volunteer Landing where we'll have some wine tastings & lots of laughs on the river, all while benefitting the Cystic Fibrosis Foundation (@cf_foundation). We went to the event last year & had a blast so come join in on the fun, hang out with me & help save lives in the process! ❤️ The link to order tickets is in my bio. I'll see y'all there! CHEERS 🥂 {ps - shop my 'blonde' sweatshirt here >> http://liketk.it/2sLrW or on my IG stories} @liketoknow.it #wineonthewater #cheers #cysticfibrosis #cysticfibrosisfoundation #redwine #whitewine #blonde #roséokay #thiswineismakingmeawesome #ootd #ootn #liketkit #LTKunder100 #LTKstyletip #lovenlabels #CFawareness #addingtomorrows

MOST RECENT

It’s time to advocate! The Senate is expected to vote on a new health care bill to repeal the Affordable Care Act. Click the link in our bio to call, email and tweet your Senator today and tell them to vote “No” on the Graham-Cassidy bill. In addition to calling our NY Senators, please urge your friends and family in Maine, Alaska and Arizona to do the same!

It's a beautiful thing to have lungs that allow you to breathe air and legs that allow you to climb mountains, and It's a shame that sometimes we don't realize that that's enough
💜
Today I was challenged to do the #chroniclovechallenge by @chronicloveclub to write down 5 things I am grateful for. Although, I do have way more than 5 things to be grateful for, which isn't a bad thing 😊
1. My Support System: Family, Friends, Boyfriend, @taylorswift @taylornation, ect.
2. My donor ♻️ and medical professionals
3. My kitty cat 🐱
4. Breathing
5. To have a house to live in 🏡

I challenge @leaf7790 @kelseysleek @wendycaroline91 @rachiesleek @hotpinkcheryl @mauliolamelissa @haileehigley @caleighdoingcaleighthings @lung_story_short @ashleerae83 @ashleesleek @avolz001 to list 5 things you're grateful for 💜 make sure to hashtag #chroniclovechallenge 😘




#TiffGotLungs #lungs4tiff #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cfirl #saltycysters #youtube #cyster #fibro #love #laugh #hope #donatelife #organdonation #dream #donor #65roses #recycleyourself #taylorswift #thankful #justbreathe #spoonie #chronicloveclub #Grateful

Theater scholarship Thursday! Meet Ashley! Ashley and her family have been supporters of the LBF since the beginning and are part of the heart and soul of the foundation. She is both a financial aid and scholarship recipient where she went to camp to advance in her acting! You can follow her social media about her life with CF @ashleys.roses. #ashleysroses #thelivingbreathfoundation #cfawareness #thankfulthursday

cystic fibrosis is a really terrible, brutal disease. #KeepFighting #FindTheCure #FightCF
#Repost @fight2breathe (@get_repost)
・・・
I'm laying in bed thinking about my future as I have so many nights before. Only moments ago waking up to Bryan peering over me while my body trembled beyond my own control. Immediately my eyes meet his and my body throws itself into a sitting position followed by several minutes of dry heaving, back pulling, muscle aching, and joint burning. My body sometimes hates me for the extreme measures I put it through in order to treat my numerous diseases; especially when it's endured almost a week straight of 3am vomiting and low oxygenation combined with even lower red blood cells. I have to admit the last week I have been too tired to write, too fatigue to post regularly on social media, and too overexerted to even process most of my emotions that this journey pushes into my head. It's hard for the outside world to see the chaos as I've become a professional at hiding my illness to those who don't see all the "behind the scenes" moments. It's been difficult but it's also been filled with glorious hours of engagement party planning and growing more bonded to the people who help me survive. After all of the noise from the last 24hours this morning I was spontaneously blessed with energy and excitement for an afternoon of engagement photos. I am so grateful I have my own angel in heaven who selflessly gave me his/her lungs in order to have experiences like today. We hopped location to location from @saintfrankcoffee, to #BakerBeach, the @golden_gate_bridge, #crissyfield, and lastly our good friend's rooftop. ••@kaszphotocreative Thank you so much for making today the highlight at the end of a strugglebus week! ❤️ •• And to the love of my life, @takayama.10 thank you for always waking up to heat up beans, bring me nausea meds, rub my back, feed me sugar, and tell me you love me despite the 5am work wakeup calls. I love you #CaleighSaysBryDo #LoveWins #KaszPhotoCreativeForTheWin #SanFrancisco #SoulMate #engagementphotos #DonateLife #Fight2Breathe #CysticFibrosis #Diabetes #CureCF #CFAwareness #UNOS #recycleyourself #doublelungtransplant

Life is so beautifully simple on the trail. This was home for the evening on my 40th day on trail, somewhere in Virginia. #breathtaking4cf #adventureheroes

Today we acknowledge the Community Champion sponsor of our Scottsdale Great Strides Walk, Intrepid Coatings! Our Scottsdale Great Strides Walk is December 2nd. Create a team and start fundraising @ fightcf.cff.org #thankyouthursday #thankfulthursday #cff #fightcf #cysticfibrosis #cfgreatstrides #curecf #cfawareness #cfvoice #laceup #walkforacure #scottsdale

The Senate is now considering a new health care bill proposed by Senators Graham (R-SC) and Cassidy (R-LA). The legislation would allow insurers to charge more for people with pre-existing conditions, drastically cut Medicaid, open the door to bringing back annual and lifetime coverage caps, and roll back essential health benefit protections. Next Monday, September 25, the Senate Finance Committee will hold a hearing on the Graham-Cassidy bill and a Senate vote is expected soon after. Unfortunately, the bipartisan effort to stabilize the individual marketplace has now stalled. We are encouraging our community to contact their legislators and oppose any bill that fails to protect adequate, affordable care for people with CF. Contact your Senators here http://act.cff.org/K7ZYIaJ #protectpatientsnow #cfadvocacy #cff #cffwpa #cfawareness #adequatehealthcare #affordablehealthcare #accessiblehealthcare

A huge thank you to everyone who joined us for this year’s Salou Cup, helping to raise £3,670 to improve the quality of life for #cysticfibrosis patients. All the money raised will help fund a Vest™ Airway Clearance System for Cystic Fibrosis patients at King's College Hospital.
We welcomed 79 golfers to @wealdofkentgc for a Ryder Cup format golf tournament, an incredible raffle and auction. @copperrivetdistillery kindly set up their gazebo to offer drinks at the 'watering hole' for our players after the 9th and 18th hole.
Last years winning captain Paul (Blue team) and Ken (White team) picked their teams on Friday evening with some of the players meeting their fiercest rivals. Once again this became a close contest, with Paul's blue team winning 23-19 and retaining the Salou Cup. There was great golf being played around the course and led to some very close games. Sadly no one was able to make a hole in one on 6th to win a Mitsubishi Motors ASX. There were some very close shots though.
We would also like to thank all our sponsors on the day including our main sponsors:
@copperrivetdistillery
@windsortelecom
Ashford Orbital Ltd

#charitygolf #golf #fightcf #cysticfibrosisawareness #cysticfibrosisfundraiser #cfawareness

I'm laying in bed thinking about my future as I have so many nights before. Only moments ago waking up to Bryan peering over me while my body trembled beyond my own control. Immediately my eyes meet his and my body throws itself into a sitting position followed by several minutes of dry heaving, back pulling, muscle aching, and joint burning. My body sometimes hates me for the extreme measures I put it through in order to treat my numerous diseases; especially when it's endured almost a week straight of 3am vomiting and low oxygenation combined with even lower red blood cells. I have to admit the last week I have been too tired to write, too fatigue to post regularly on social media, and too overexerted to even process most of my emotions that this journey pushes into my head. It's hard for the outside world to see the chaos as I've become a professional at hiding my illness to those who don't see all the "behind the scenes" moments. It's been difficult but it's also been filled with glorious hours of engagement party planning and growing more bonded to the people who help me survive. After all of the noise from the last 24hours this morning I was spontaneously blessed with energy and excitement for an afternoon of engagement photos. I am so grateful I have my own angel in heaven who selflessly gave me his/her lungs in order to have experiences like today. We hopped location to location from @saintfrankcoffee, to #BakerBeach, the @golden_gate_bridge, #crissyfield, and lastly our good friend's rooftop. ••@kaszphotocreative Thank you so much for making today the highlight at the end of a strugglebus week! ❤️ •• And to the love of my life, @takayama.10 thank you for always waking up to heat up beans, bring me nausea meds, rub my back, feed me sugar, and tell me you love me despite the 5am work wakeup calls. I love you #CaleighSaysBryDo #LoveWins #KaszPhotoCreativeForTheWin #SanFrancisco #SoulMate #engagementphotos #DonateLife #Fight2Breathe #CysticFibrosis #Diabetes #CureCF #CFAwareness #UNOS #recycleyourself #doublelungtransplant #ThanksForTheRooftopKessler

Have you registered yet? Burpee's for Breath is on September 30th. Individual and Team of 4 divisions. Raising awareness and funds for Cystic Fibrosis research right here in Calgary! Let's all make a difference. Registration link in bio. #yyc #burpees4breath #cysticfibrosis #cfawareness #crossfit #wechallengeyou #whodoyouchallenge #burpees #exercise #makeadifference

When your enzymes finally come over 3 weeks after you ordered them even tho you paid for next day shipping 🤦🏻‍♀️|| Seriously tho it's been beyond frustrating trying to get my 3 month supply of enzymes this time around after having to switch pharmacies about 6 months ago. This is a problem I've never had in the past when it comes to my enzymes & if I did not continue to call on almost a daily basis for almost a month straight I don't think I ever would have successfully received my enzymes, which are 100% needed for me to eat any & all food. Thankfully CVS FINALLY got it right & I came home to find these at my doorstep. I was officially down to my last bottle & in a few days I would have been in a situation where I wouldn't have had any enzymes left to eat any of the meals my body needs. Considering I initially ordered these almost a month ago giving the pharmacy plenty of time to get things in order, this is just not acceptable care in my book & it makes me dread the process of getting them in another 3 months.

A lot goes into managing a chronic health condition aside from the hours of treatments & medications I take on a daily basis. A lot of my down time is filled with calling doctors, pharmacies, insurance companies, etc. which means it makes all the difference dealing with ppl & companies that just get it & advocate for the patient.

I commend all of you living with an acute or chronic health condition & all that you balance on a daily basis💜

❌⭕️❌⭕️Lea

3 days till The 15th Annual Wine Opener benefiting @cff_stl takes place at CBC's Ross Hall on Saturday, September 23rd from 7:00-10:00pm. Join 350+ people for an evening of wine tastings and food tastings as we uncork a cure for cystic fibrosis!

Sample over 40 wines from @sgwinespirits and taste local eats from @ruths_chris_stlouis (VIP), @fivebistro, @twistedtreestl, @threekingspub, @tanisushi, @rosalitascantina, @jmcgraughs, and @nothingbundt with your ticket to this fun event. .

VIP Tickets are SOLD OUT, but General Admission Tickets are still available online until Thursday, September 21st at 11:59pm at http://WineOpenerSTL.com. Cheers!

#WineOpenerSTL #winetastings #foodtastings #CFawareness #cysticfibrosis #cysticfibrosisfoundation

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