Skip to main content

All I want for Christmas

All I want for Christmas is to be healthy. And I mean really healthy. I mean able to run, jump, and dance kind of healthy. I mean being able to eat whatever I want, whenever I want. I mean not having to worry about lung function, bone density, caloric intake, blood sugars, vitamin levels, liver and kidney function, and IV antibiotic scheduling. My head is swimming with so many issues and problems right now, it's a bit overwhelming.

Maybe soon, my Christmas wish will come true. After all, researchers are discovering more and more about CF and the mutations that cause it, However, I don't think I'll get to start on any ground breaking medication soon. Nor do I think I will be free from health worries for a very long time. And you know what? As much as I would love to be rid of the hassle of dealing with cystic fibrosis, I wouldn't trade the life I have right now for anything. I have an incredibly supportive, loving family. I have terrific friends and mentors. I am completely and totally in love with Jesus Christ and cannot imagine life without His saving grace. I have 2 godly church families. I love being a student at Baylor (sic em bears) and get excited when I think about learning and attending classes. I have a strong, independent, determined spunk that God has blessed me with as well as a capable mind and body. What more could a girl want?

I may not get my Christmas wish this year, and I may never get to see this wish fulfilled. But I'm okay with that. Sure, it'd be nice to be normal. And yeah, I get sick and tired of being sick and tired. Yet God will not leave me nor forsake me. I trust Him with my life, my desires, my everything. He has given me the best gift I could ever ask for-salvation through Jesus. Everything else is fleeting compared to that, even my Christmas wish of healing.
Labels:

Comments

Post a Comment

Popular posts from this blog

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
2 comments
Read more

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
4 comments
Read more

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. —www.cff.org
1 comment
Read more