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Showing posts from 2014

2014 Books

Last year, I started keeping record of all the books I read during the year. I loved having that record to look back on and remember all the different books I read. I decided to do the same thing in 2014! Here is my 2014 reading list. If you have any suggestions for 2015, let me know! I'm always looking for good reading material. 
Bossypants by Tina Fey Breathtaking by Amber Payne The Treasure Principle Gifted Hands by Ben Carson Art Briles- Looking Up by Nick Eatman Passion-The bright Light of Glory by Louie Giglio The conspirators by EB Henning Mary Poppins by PL Travers Bridge to Haven by Francine Rivers Captivating by John and Stasi Eldridge Wild at Heart by John Eldridge  Little Women by Louisa May Alcott  Love does by Bob Goff Reason to Breathe by Revecca Donovan The Four Loves by CS Lewis Beyond Breathing by Margarette Cassalina Extremely Loud and Incredibly Close by Jonathan Safran Insurgent by Veronica Roth If I stay by Gayle Forman Where she went by Gayle Forman Interrupted by Jen Hatmaker Ra…

Christmas wish

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. I mean being able to lift weights or go on a jog or sit on the front porch without wondering if your lungs are going to start bleeding. I mean being able to stay up as late as you want without fretting about sleep deprivation and the drastic problems that could cause. My head is swimming with so many issues and problems right now, and it never seems to stop.
Maybe soon, my Christmas wish will come true. After all, researchers are discovering more and more about CF and the mutations that cause it. Some CF patients are on these groundbreaking medications. And you know what? They're able to live near normal lives. I can't even imagine! No, …

In sickness and in health

"My illness has always made me value relationships and be wary of fickle people. In dating, I had to choose the right moment to mention my illness and if it was an issue, I would walk away. One man reacted in a bizarre way. He said he felt he'd been cursed, falling for someone who was ill. So cystic fibrosis has one advantage - it sifts out the nice guys from the idiots"--(http://www.dailymail.co.uk/femail/article-517754/Living-cystic-fibrosis-My-life-expectancy-31-Im-29-So-thats-years-parties-extreme-sports-romance-.html)
I love this quote. When most people say their wedding vows, "in sickness and in health" is just a phrase. They don't usually think about the practicality of being there for someone they love deeply when that person is struggling to take the next breath. They usually think they have years, maybe decades until the "in sickness" part of the vows kicks in. But with cystic fibrosis? When people choose to marry a person with CF, they m…

Lung bleeds Galore

Today was not a great day for health-related things. I had a post-IV appointment with my CF doctor's PA. I thought it was going to be a normal, quick appointment. However, about 30 minutes before I left for my appointment, I started coughing up blood. I mean, straight blood. This has now happened four times in a little more than three months--definitely not okay. The first bleed was towards the end of September. That bleed was definitely the biggest. I stained our front porch with my blood and filled a few Kleenexes. The second bleed was in November, and pretty soon after, I started IVs, hoping that would take care of the bleeding. Then, I had the 3rd bleed one day into the IVs. I was still hoping the IVs would get rid of any infection if that was the source of the bleeding. With this fourth bleed, however, I don't think infection is the culprit. At the doctor, they decided that I have to have a pulmonary embolization. An interventional radiologist does the procedure. I'll…

Semester Life Lessons

Yesterday, I finished my 7th semester at Baylor University. How in the world is that possible--it feels like yesterday that I finished my first semester of college! When I complete a chapter in my life, I like to look back over the time and reflect on the lessons God has taught me because it is a good way to process what I've learned. So, here are some lessons I've learned from my recent experiences.

1. Waiting is not a bad thing. Granted, I am not the most patient person in the world (it's something I'm working on). However, in my time of waiting, God is able to shape me more into the person He is making me. He is teaching me to trust Him fully and completely. I may be waiting on a whole bunch of different things--waiting to hear from grad schools, waiting for a relationship, waiting for a cure for CF, waiting to graduate, waiting for my grades to be posted from this semester--but God is good, and I am taking life one step at a time. If I always lived with the thought…

Beauty

Beauty. Our culture has twisted and messed up beauty so its original meaning is lost behind stereotypes and sexualized concepts. I just finished reading the book Captivating. Women, if you haven't read it, I highly suggest it. Men, if you haven't read it, it's about "unveiling the mystery of a woman's soul", so you should also check it out. It explains that the essence of women is beauty. Deep, wonderful, awe-inspiring beauty. God himself is Beauty in its purest and most amazing form. Look around--see the creation He has made and the care He puts into his work. That alone shows that He is beauty and He revels in beauty. And women were made to reflect that part of God. However, Satan has spoken lies into our ears, telling us we are not lovely or captivating. He's told us that we're too much or not enough. He pushes us to close up, to not offer our beauty or our strength, to put up masks to hide our true selves. Friends, this is not how we are called to…

A blog of thanksgiving

If you didn't already know: Thanksgiving is quickly approaching! I think Thanksgiving is one of my favorite holidays. Not just for all of the yummy food (which is a definite bonus) or because of the hours of football on TV (which I thoroughly enjoy). No, I love Thanksgiving because it's a holiday intentionally set aside for thinking about the many blessings God has given us. So, this blog is dedicated to giving thanks and being truly grateful.

1. I am thankful that I haven't had any health set backs that have affected my school work since being in college. By the grace of God alone, I am still maintaining a 4.0 GPA. I know it's not the end of the world if my GPA fell a little bit, and no matter what happens these last two semesters, I am grateful for my academic success and give all the credit and glory to God.

2. I am thankful for my friends and family both here at Baylor and around the world. I know that God has used the people who have crossed my path to mold me and…

CF and College Life

Part 3 of my CF story

In my last blog, I told you that my senior year of high school, I did IV antibiotics for 9 months straight. That 9 months happened to end right before I headed to college. However, within hours of my parents leaving me at college for the first time, I felt a pop in my lungs and started coughing up tissue upon tissue of blood. I had a lung embolization surgery my first Friday of school to try and keep the bleeding from happening again. What a way to start college, am I right? After life got back to normal after the surgery, I slowly began to grow accustomed to taking care of all my medical needs, but it was hard work. I had to figure out how to balance breathing treatments, school, meeting and making friends, social activities, finding a church, getting plugged into a church, and seeing my family. Honestly, I'm still figure out how to balance many of those things. As well, I had to figure out how and when to tell people about my cystic fibrosis. Since I had li…

Part 2 of my CF story

Part 2: Middle School and High School

As many of you know, cystic fibrosis is a progressive disease, meaning it gets worse over time. Therefore, it was to be expected that I would have more problems the older I got. In middle school, I started having more frequent lung infections. I did IV antibiotics much more regularly and began to do them once or twice a year. In 7th grade, I had first experience with CF that truly scared me. I had been on IV antibiotics for almost 5 weeks when I started running an extremely high fever and couldn't stop shaking from chills. My parents rushed me to the hospital, and I was admitted immediately. The doctors had no idea what was wrong with me, but I kept getting weaker and more exhausted. After what seemed like forever, they finally figured out that I was having a drug reaction to one of the medicines I was on. Once they stopped the medicine, I started healing. It was at that point that I realized CF isn't a joke. I could not control how CF aff…

My CF story part 1

I had this thought the other day. I have known different people over different parts in my life, but besides my family, very few people have been with me throughout my entire life and know all the nitty gritty details of my 21 (almost 22) years in existence. Therefore, a lot of people don't know my full CF story. Like I've said in the past, CF is not my identity or the thing that makes me unique compared to other people, but it is a part of me. Maybe it's because my birthday is in a week, but I have this strong desire to look back over my CF journey and reflect on my story. Over the next week, I'm planning on writing several blogs that chronicle my CF life. Stay tuned!

Part 1: Birth-Elementary School

I was born on November 24, 1992. Mom had been on bed rest because Katie and I were a little troublesome in the womb (meaning we tried to come super early). When Katie and I were born, my parents had no idea that I would have a problem. But, unfortunately, I was born needin…

The "If only" game

Yesterday, I got caught up in the game of "if only". Unfortunately, that's not a good place to be. My mom went to a CF update with Dr. Campbell, who is the executive medical director of the Cystic Fibrosis Foundation. Basically, he's a big shot in CF research, and he knows all there is to be known about where research stands. He had a lot of interesting points that were extremely exciting to hear! However, after hearing my mom's summary of Dr. Campbell's talk, I came away thinking, "If only I was born 20 years later". The life expectancy of a baby born with CF today with the current medications, not even with Kalydeco or the other exciting medicines on the horizon that could address the root problem of CF, is 56. That's 20+ years longer than the life expectancy was for a baby born with CF in 1992, the year I was born. The hope is that with the new medications, the life expectancy for a person born with CF will soon be 86, which is basically the …

Thoughts on Red Band Society

Have you heard of the new show called Red Band Society on Fox? Let me give you the run down. It features several kids who "live" in the hospital, including two cancer kids, a kid with cystic fibrosis, one girl with a heart problem, one girl with anorexia, and a boy in a coma.   I wanted to give this show a fair chance. I mean, any press regarding sick kids should be a good thing, right? Maybe a show focusing on children with illnesses could help our society be kind to people dealing with illnesses and treat them with compassion. Maybe people would stop walking on eggshells around kids with diseases. Who knows, maybe something good could come from it. However, after watching the show for several weeks, I have come away fairly disappointed in its execution for several reasons. 
1. The boy with cystic fibrosis is a very poor representation of CF patients. He is supposedly in the hospital for a tune up, but you never see him receiving IV antibiotics, doing breathing treatments, s…

Catch up post

If you've been wondering where I've been, don't worry, I'm still alive and well! The past few months have been a bit crazy, and I don't expect it to get much calmer anytime soon. So, to catch you up...

I started school in August. That's been going really well. If you've read any of my past posts, you know I'm a nerd and love learning, and I thoroughly enjoy school. Sure, taking tests can be a pain when they all fall within a week of each other, but I like the challenge of showing off what I've learned. Call me crazy, but it's true. My classes are interesting, and I'm continuing to expand my knowledge on a daily basis. I'm blessed by the privilege of getting to learn from some amazing professors who really care about their students at a school that pushes students to do everything with excellence. Next week, I register for my final semester as an undergraduate. I can hardly believe that I'll be walking the stage to receive my college …

Summer Reflections

I'm starting my senior year of college next Monday. How in the world am I old enough for that?! Sometimes, I feel like I've lived a lifetime. Others, I still feel like a kid. Today, I'm definitely feeling like a child, not old enough to be living on my own, handling my medical care, being less than a year away from graduating college and (Lord willing) starting grad school, and having friends getting married. Yet here I am, and all those things are a reality in my life. Time is a funny thing; you don't notice its passing until you look back to see how far you've come. 
Looking back over these past three years of college, I can see how much I've grown and changed. I'm no longer the same person I was in high school. For example, I was a Christian in high school, but I have grown so much in my faith in college. I've learned what it means to trust God in every single circumstance. God has developed in me a love for the Bible that wasn't nearly as fierce …

A Pang of Sadness and Joy

Hey friends! I recently saw this article on twitter, and I knew that I had to share it on my blog. If you know me at all, you know that cystic fibrosis is obviously a huge part of who I am. I have learned about the preciousness of life and how to trust God through the good times and the bad. I, of all people, know how hard life can be with cystic fibrosis. But I also know that I wouldn't trade my life for anything. I am extremely blessed with great friends and an amazing support system, and I know that God has a plan for my life. Me having CF wasn't a surprise to Him!

However, I have heard people say that with the ability of medical technology to know if a child is going to have a "problem" before it's born, parents should think critically about their options regarding life before they have to deal with immense health struggles. This last year, I even overheard one person say that all babies with CF should be aborted because parents shouldn't have to deal wi…

Surgery "adventure"

If you're friends with me on Facebook, you may have seen all the crazy updates the past week. If not, let me tell you that I had a rather terrifying experience during surgery on July 18th. I was going in for routine sinus surgery; no big deal, right? Wrong. No one will ever be able to tell anyone in my family that there is such a thing as routine surgery after this experience. I got to the hospital bright and early (5:30 am, to be exact). Everything went fine during check-in. They gave me the way too big hospital gown, took some blood, asked me a million and two questions, and got me all ready to go into surgery. The sinus surgery itself went beautifully. Dr. Eskew was able to get a lot done and fix a lot of potential issues. However, when I was waking up from the anesthesia, my breathing was out of sync. My abdomen and chest were not moving together, and I had uncontrolled movements. As well, my carbon dioxide level was 92; it's supposed to be between 23-29 (so it was dangero…

CF summer life

Today, I start yet another round of IV antibiotics. I counted the number of times I've had IVs the other day, but I kept losing track. If I were to make a rough estimate, I'd say I've had 25 or so courses of IV antibiotics over my life. Needless to say, I'm used to the routine: get poked/taped up so my port stays accessed and sterile, run two different IVs every eight hours, flush the port with saline and heparin appropriately, get blood drawn twice a week, get port reaccessed once a week, run the course of antibiotics for three weeks, go to the doctor at the end to check PFTs (pulmonary function test), don't get the access site wet, shower strategically, take zofran (anti-nausea medicine) as often as possible, take naps frequently. When you've had heavy-duty IVs as often as I have, you know all the tricks. Let's be real, I'm pretty sure I know more than most nurses! But that's beside the point. IVs are a part of my cystic fibrosis journey. It's…

Thankful Thursday

In the craziness of this life, we often forget to stop and be thankful. We get swept away with running errands, going to school, doing chores, working a job, or spending time with friends and family. None of those things are bad, but it's good to slow down and remember how blessed we are. I haven't written a thankful Thursday blog in awhile, and I decided that today would be the perfect day to write one. 
1. I'm thankful for the time I had in Waco this summer. Not only did I get to work Camp Success (see last blog post), but I also got to know some really amazing people who I am thankful to now call my friends. I was able to break out of my introverted shell and enjoy getting out of my comfort zone. Can you believe it--I actually enjoyed getting out of my comfortable little bubble! I know that God gave me the opportunity to stay in Waco for half the summer, and I am so grateful!! 
2. I'm thankful for my education and for scholarships that help me pay for it. I am an avid…

On Camp Success

"A career in speech-language pathology challenges you to use your intellect (the talents of your mind) in combination with your humanity (the gifts of your heart) to do meaningful work that feeds your soul."-Megan Hodge
For the past few days, I've been trying to figure out how to sum up my experience as a reading specialist for Baylor's reading and speech camp (Camp Success). I've finally figured it out. Camp Success ignited my heart with a love for the kids who attended camp as well as for my future career. Every time one of my kids improved in fluency, I rejoiced with them. When sounds-symbol relationships began to click in their brains, I couldn't contain my excitement. When they read short stories and answered comprehension questions perfectly that they were unable to answer before, I wanted to jump up and down. When I saw their confidence increase by tenfold, I couldn't wipe the smile off my face. These kids learned so much in just four short weeks, n…

Exciting update!!

The following is written by a Cf patient who participated in a recent study designed to treat the underlying cause of cystic fibrosis. Enjoy the update!!
The result of a trial by Vertex Pharmaceuticals for a drug that treats the underlying cause of Cystic Fibrosis was released. I read the data inThe New York Timesover and over until it sunk it.
The study showed the drug combination of Ivacaftor – also known as Kalydeco – and the new drug Lumacaftor has a groundbreaking effect on people with Cystic Fibrosis who were carriers of the gene combination double delta F508. It’s the most common genetic mutation in just under 80pc of the world’s population with CF. The results narrated perfectly how and