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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 enough of …
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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 within the ne…

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. —
The Boomer…

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 terms, health…

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

My port, aka my best friend

My port, aka my best friend
If you have a chronic illness and are thinking about getting a port, you need to read this post. If you want to know more about ports, you need to read this post. Or, if you just like following along with me, you need to read this post! 
I’ve had a port since 2009. After repeated blood draws and PICC lines, my veins were shot, and every time I needed IV antibiotics I had to have anesthesia to get a PICC line places. Typically, this procedure is done while awake, but my veins would no longer cooperate. Making the decision to get a port was not easy for me; I fought it for years. I did NOT want anything weird sticking out of my body. What 16 year old does! However, I finally caved and decided the pros outweighed the cons. The breaking point for me wasn’t the anesthesia from the PICC lines but the repeated failed, miserable blood draws. Nurses would poke and prod and dig just to try to get a vein to cooperate. Let me tell you, it wasn’t pretty. 
The procedure to …