When Noah proposed, the first person I told was my Sami. And I knew in a heartbeat I’d be asking her to be my maid of honor. Before she passed we made plans to use Lavender in the wedding, in any way we could manage. Lavender is the color of the cystic fibrosis ribbon, so I worked hard to make it the standout color in our wedding, especially when we lost her.
Given all of our hard work, and the importance of this element, we were devastated when we received our wedding photos and all of the purple had been edited out. Not only did our work seem like a waste, but my heart broke when I realized Sami wouldn’t be included in these special photos like I imagined.
The pictures you see here were taken by my brand new sister, @cassondremae_photography
who helped me to keep my vision alive. She offered her absolutely unreal talent to retake wedding photos that we will cherish for a lifetime. Not only did she go out of her way to keep the Lavender details alive, she also sought out amazing women who dressed me up and made me look like a princess. But most importantly, Cassie lifted our spirits and captured our love in these beautiful and fun works of art.
I am forever grateful to be part of such a warm and generous family. And I will never forget this magical day💜
CF is a roller coaster. When you think you’re doing well, your test results say your sick but when you aren’t feeling well...tests come back A-OK. What is that?! First check up at St Mikes today since I got off steroids. Unfortunately, my lung functions dropped 7% which brings me down to a lovely 34%. I’ve been doing 3 KM walks and weights 4 days a week to get ready for the wedding. GOOD NEWS- down 12 lbs in 5 weeks 🙌🏻 keep on, keepin’ on. I’ve added 2 antibiotics to my routine for the next 2 weeks trying to turn this lung function around. It’s only 10 more pills a day...what’s 10 more? 😧 welcome to the day to day changes CF brings. #endcf #cfwarrior #somanypills #antibioticoverload #thankfulformydoctors
I’ve been DYING to post this photo, and now that I finally have this floral bib listed in my shop, I felt like now was the time!
Maxine is the most amazing mama to Indigo, while simultaneously fighting cystic fibrosis each and every day. She’s such a strong, beautiful soul and Indigo is just the sweetest little human- I love connecting with such inspiring mamas up here in Hudson. ❤️
Maxine’s cystic fibrosis pregnancy story was even featured on @TheBump
earlier this year! You can read more about her at https://www.thebump.com/a/pregnant-with-cystic-fibrosis or by clicking the link in her profile. .
Thank you @maxinewears_indigo
for sharing your story, and your baby, with our tribe! 😘
Maxine is wearing the Bloom Top Knot Headwrap and Indigo is wearing the Bloom Heirloom Bib. 📷 @turnquistphotography
If the AffloVest can do this while you are holding a cup of coffee, imagine what it's doing in your lungs!
Research is being done at the McGill university health Center on an infection called pseudomonas, and this infection affects many people who fight CF everyday! Today I went on the news for interview, to help continue to raise awareness for CF! This new research gives me hope to keep fighting, and reminding me one day we will find the means to kick CF in the butt! 💪🏼💜🌹
#cfwarrior #staystrong #staysalty #cfawareness #awareness #cbc #strength #pseudomonas #65redroses
🌟And bonus!🌟 We’ve added a Sprit Shop to the website! We have necklaces, bracelets, and even tassel earrings that are completely customizable to show off your team’s colors! 🏈🏀⚽️
Fall is upon us and temperatures are dropping (except in Charlotte, NC 😂), but never fear... Sel de Vie is ready to help keep your style cool as the seasons change! We are incredibly excited to bring you five new jewelry collections, each honoring a brave CF warrior. Without further ado, we would like to introduce you to our Army Neutrals Fall 2018 Line!
I honestly don’t know what life was like before I discovered @dailyharvest
~ Cystic Fibrosis not only effects the lungs, but other areas of the body too. My body doesn’t absorb nutrients that well, that means it’s even more important for me to eat healthy foods. These cups are filled with organic ingredients that are good for my mind, body and soul. I’ll be packing my smoothie to-go and taking the dogs for a walk, it’s a perfect cloudy day!✨You can do a happy dance too! Get your first 3 Daily Harvest cups for free! Use the code: RE-8M78KR6🥑🥒🍑🍎✨
My Meal Plan for the next 7 days. Those of you who know me, will know this is the least amount of food i have been on since I was a child, and even more noticeably a LOT less Kcal than what I am previously used to. However this year has been a constant battle due to new complications of Cystic Fibrosis Referred Diabetes, with my sugars back in January being 30+ some days. A lot of hard work has gone into bringing them down below 12, and by massively dropping food intake and then slowly building the intake back up to the required level I hope to get over the final hurdle of hitting both consistent single figures and eliminating major post meal sugar spikes.
I will now always be on Insulin for the rest of my life, however once I can get this last hurdle down, there's no stopping me again 😉
#cysticfibrosis #cflife #cfdiabetes #cfdiet #diabetes #insulindependent #mealplan #diet #dietplan #healthy #health #medical #longpost #cfwarrior
- I remember being SO excited this day because they removed the IV from her head and I could finally put a bow on her. The IV got removed because the specialist finally got the PICC line in after the second attempt. Because of all the wires, tubes, and lines I couldn’t even dress her up in all the newborn clothes she had. By the time she was discharged she was almost a month old and a size up. This was also one of the first times I could hold her again after her surgery. Because she had an epidural to control her post-op pain we weren’t able to hold her and pick her up for several days. .
#cysticfibrosis #cf #meconiumileus #survivor #nicuawareness #cfbaby #tbt #cffighter #cfwarrior #curecf #curecysticfibrosis #sixtyfiveroses
🌜If you get tired, learn to rest, not to quit🌛- Banksy
~Views from above~
Today was filled with wonderful moments. I spent the day with a great friend and successfully went to 5 different places. (With little to no anxiety) Slowly but surely my anxiety is going away and I couldn’t be more relieved. It has ran my life for too long. I sold a few things on posh/merc which meant I got to see one of my favorite people: Noah, at the post office. Days like today are few and far between, but it’s up to me to make the changes. 🌞Keep your face to the sunshine and you cannot see a shadow🌞
Track & field race. Both kids came in faster than last week. 👍🏻👍🏻#cfwarrior
) doesn’t let CF get in the way of living her life! Thanks for sharing Chelsea! Share your photos or videos with us by tagging us with #AffloVest
I've needed to spend the past few days in the hospital for IV antibiotics. Its a bummer but its my first time in 8 years here and also needing a PICC so I had a great run of being healthy thanks to Kalydeco, excerise, and my CF team.
You know they rock when they go for a walk with you so you can get fresh air! All I can say is THANK YOU!
To all my CF friends, keep going, exercise, and participate in clinical trials if you can. I did and it made an amazing difference in my life and they truly make a difference to our community.
#curecf #clinicaltrials #kalydeco #cysticfibrosis #believe #rockcf #theboltsruncf #thebolts #hope #cf #cfrunner #warrior #cfwarrior #raredisease
Meditation, something I do most evenings before bed. This really helps with anxiety, stress, depression, and just staying happy.
Us guys with CF have times where we all worry, stress ourselves out, which can often lead to an admission in my last 3 cases!!
I managed to stay out of hospital IV free for 6 years prior to this!! The last 2 years I've had 3 admissions, all relating to stress. So this is something I am now passionate about, staying focused and happy, and fingers crossed it will keep me out of that dreaded hospital! 😁👍👊
#meditation #cf #cfwarrior #cysticfibrosis #65roses #fit #fitness #yoga #budda #happy #happiness #staystrong #day #night
Why do things the conventional way 😜
Feeling so inspired by this artist I’ve recently learned about; @colbycrisler
Colby is a CF Warrior who has recently undergone a double lung transplant and uses the breath she has to SING the most beautiful songs worshiping Jesus! This song, May 26th, has been playing on repeat for me this morning!
Take a minute this morning to Thank God for the wonderful air you’re able to breathe deep into your lungs. Not everyone is so fortunate. Kudos to Colby for using your lungs in such a beautiful way!
#cysticfibrosis #cfwarrior #justbreathe #hismercy
THANK YOU! The Kickstarter campaign for my upcoming book ‘47 / A Life With Cystic Fibrosis’ ended this morning and achieved over 250% it its target. I’ve been absolutely blown away by the support. A huge thank you to everyone who backed the campaign. I can’t wait to share it with you. See link in my bio for more information about the project
It’s been a long time since I posted// I finally got my new portable vest and I love it! It’s so much better than the big machine I’ve always had 💜 #cfirl
Leading up to today, I was filled with anxious thoughts. I swore I was going to have to be admitted for a course of IV Antibiotics and special monitoring since I’ve been sick for months. But, not only did I get the clear....I had ZERO ANXIETY all day. I was so nervous for this appointment and had tons of anxiety on top of my typical daily anxiety. But today...NONE. It may not seem like a big deal, but it’s a huge deal for someone who suffers from crippling anxiety every single day.
The Cystic Fibrosis team just increased my breathing treatments and gave me some Flonase for my chronic sinusitis (finally) I have another follow up in 6 weeks to see if anything has improved. For those of you who know, my FEV1 level was 2.38 on my PFT’s.
It was a long day of traveling, talking, and planning. I’m spending the rest of the night relaxing and soaking up the good news. Thank you to everyone who wished me well 💛