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CF Letter 2020

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr
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It's been a while since I've written. To be honest, I've missed it. Not for the likes or the comments, but because I do my best processing through writing. And, as we all know, there's a lot to process right now. I decided now would be a good time to jump back into writing while I have the time. It feels like the world is in chaos. Coronavirus has lots of people on edge. Many of us are quarantined to our houses. Scientists are telling us it's going to get worse before it gets better. I saw today that we might have to practice social distancing for a year or longer until there is a vaccine. A year?? Humans are designed for community and to be around one another. How are we supposed to live like this for a year or longer? Right now, we are just starting to figure out what it means to live in the time of coronavirus. There is still so much unknown, and that leaves many of us, myself included, feeling anxious. So today, I wanted to share some positive things I've

CF Letter 2019

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb

CF Walk Letter 2018

Dear friends and family, I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures.  My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs wit

The spirit of giving

It’s the end of 2017. That means it’s time to send in those end of year donations. Want to give to some amazing charities actually doing good in the world? I’ve compiled a list for you!  The Cystic Fibrosis Foundation- Obviously, I’m biased toward CFF. They fund amazing research that is saving people’s lives! Don’t you want to be part of that? Not only that, but 90 cents of every dollar goes directly to advocacy and CF research. If you donate to the Cystic Fibrosis Foundation, you know your money is going to be spent wisely and is going to make a difference. Since cystic fibrosis is an orphan disease (that means it’s really, really rare), people with CF rely on your donations to fund research. As well, Congress just cut the orphan drug tax credit, meaning companies are not going to get as much incentive for studying orphan diseases and creating drugs to treat them. The CF Foundation needs people like you to donate to CF research so we can find a cure for CF SOON. —

Book list 2017

My reading list is a little shorter this year than I would like (life, y’all), but I’ve still enjoyed reading a variety of books this year.  If you have any suggestions for my reading list in 2018, let me know! I’m always looking for a good read :). 2017 A Little Princess by Frances Hodgson Burnett Anne of Green Gables by Lucy Maud Montgomery  Snow White and the Seven Dwarfs by Jessie Brahms White Life Animated by Ron Suskind Emma by Jane Austen Alice in Wonderland by Lewis Carroll Rebecca of sunnybrook farm by Kate Douglas Wiggin Spillway by Deborah Jentsch Chasing sunsets by Karen Kingsbury Brush of Wings by Karen Kingsbury Lila by Marilynne Robinson The Confession by John Grisham Little Women by Louisa May Alcott Sisters first by Jenna Bush Hager and Barbara Pierce Bush The Road Back to You by Ian Morgan Cron and Suzanne Stabile  Where is the Mango Princess? By Cathy Crimmins 

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me.  I’m thankful for... My new husband ❤️ . As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical term