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Showing posts from 2017

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 …

Back to Square One

I was doing so well.
At the end of August, I read Gunnar Esiason's blog about beginning the Couch-5k program (you can read that here). It inspired me to begin the program myself. I knew that it would be hard, but I also knew that I needed to push myself to exercise more intensely to help my lungs. Ever since I got the blood clot in January, my lung function hasn't been where I wanted it to be, and exercise is a tool that is very useful in maintaining as much lung function as possible. Since I've never been able to run even a mile without stopping, I was very intimidated and knew that I might need to add my own "steps", but I was so determined to complete the program, no matter how long it took. 
The program begins with a 5 minute warm up and ends with a 5 minute cool down for every exercise. The first week, you jog a minute, walk a minute and a half for a total of 20 minutes. I breezed through the first week pretty easily. The second week, you jog a minute and a …

The false narrative

Today I was at church with my parents. After the baby dedication, the pastor prayed over the families. It was a fine prayer until he said something along the lines of "raising kids in a Christian home is the best way to ensure kids grow up healthy". This is when I opened my eyes and tuned out the rest of the prayer. Honestly, this is where I tuned out the rest of the service. This false narrative is exactly why American Christianity can be so out of touch with the world.
No. No. No. This is not how God works. Yes, in a world without struggle and pain and heartache, I wouldn't have cystic fibrosis. But in our current, broken world God uses illness and weakness to prove His strength and power and love. If God wanted to heal me, I have full confidence that He could and that He would. I know there are people who have experienced divine healing. But in many cases, God uses our weaknesses rather than spontaneously healing us. In 2 Corinthians 12, Paul says, "But He (the Lo…

CF letter 2017

Dear friends and family, 
Happy 2017! I hope this letter finds you in good health and that you all are doing well. Since my last letter, I’ve had a bit of a crazy year. I have continued making my way through grad school, working in a variety of settings with a variety of clients. I have loved grad school and am so excited to become a speech-language pathologist! I know this is exactly where God has placed me. In May (right before the CF walk), I will graduate Summa Cum Laude from the University of Texas at Dallas with my master’s degree and will officially enter the working world. It’s a little terrifying because I’ve been in school for so long, but I’m excited to see what lies ahead. As well, I have another bit of wonderful news—I’m engaged!! Eric (my fiancĂ©) is amazing and so supportive. He is not scared off by my CF, and he is so willing to learn everything he can about my health. We are getting married in July, and we are so thrilled!
My health has been a bit rocky this year. Eve…

CF limits

I was always told I could do anything.

That CF couldn't stop me.

That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal".

I'm finding out now that's not necessarily the case.

Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pathology.…

Thoughts on the healthcare debate

If you're going to read this post, please promise me this: you will read it all the way through AND you will try to read it from my perspective. Deal? Okay, let's proceed.

I haven't kept very quiet on social media about my opinions on the healthcare debate. However, you can only write so much on a short Facebook post or tweet. I am going to flesh out my ideas on healthcare and present to you exactly why I believe what I believe.

1. If you have read any of my blogs in the past, you know I have cystic fibrosis, a genetic, progressive, life-threatening disease. My healthcare costs are undeniably massive. My family maxes out on our out of pocket deductible within the first month or two of the year, depending on what is going on in my life. Obviously, my family has to have the best coverage possible so that I can get the medicines I desperately need. Before the ACA (when I was growing up), people would ask me what I wanted to be when I grew up. Often, I didn't know the answ…