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Showing posts from May, 2013

The Murnaghan case

If you've been paying attention to any of the news websites lately (CNN, Yahoo, etc), you may have seen a story about Sarah Murnaghan, a ten-year-old girl with cystic fibrosis who is fighting for her life. The story is very controversial because, well...I'll just let you read the article posted by CNN. The link is below:
http://www.cnn.com/2013/05/27/health/pennsylvania-girl-lungs/index.html Instead of saying my opinion on the matter, I decided to let Nathan Lawrenson do the talking. Nathan is the husband of a woman with CF who has undergone two double-lung transplants. Needless to say, they are quite familiar with the system of organ donation. I encourage you to dive into his thoughts and discover for yourself what you believe about organ donation. After reading the CNN article and the response by Nathan, please pray for Sarah and her family. Pray for a miracle. Pray for healing. Pray that God's will be done in this situation.

" Here are a few of my thoughts about thi…

I wish

I wish people knew what breathing felt like for me. I am always embarrassed when I can't keep up with my peers, when I'm out of breath after walking up a flight of stairs, when I take awkward breaths in the middle of talking because I need oxygen. People give me looks that say, "wow, you're out of shape," or "you should get to the gym more often". I work my behind off to keep my lungs as healthy as I can, but I guarantee you that breathing with 60% lung function is a lot different than breathing at 100%, even if you work-out often. However, there's no way to really describe my breathing to a non-CFer. If people could breathe with my lungs for a day, maybe they'd understand the struggle I go through on a daily basis but am unable to verbalize.

Maybe they wouldn't abuse their bodies as much as they do.  
I wish people knew how furious it makes me when they take their health for granted. I can barely keep myself from giving smokers a piece of my…

Great Strides Walk 2013

Today, my family and I went to the Austin Great Strides Walk for Cystic Fibrosis. We've participated in these walks for as long as I can remember. I've spoken at several of the events (some of my more recent speeches are actually on YouTube courtesy of my dad), and we always strive to raise as much money as possible for the CF Foundation. Although we didn't put together a huge team like we have in previous years, I still loved taking part in the walk. The strange thing is, I was one of the older patients with CF in attendance. Instead of my age adults,  I saw all these cute kids, playing with their brothers and sisters and throwing around complementary frisbees (with their leis around their necks, so others knew who had CF). I understand why pictures of children are always used to encourage outside donations. No child should EVER have to go through what I've gone through with CF. One of the precious girls who spoke was only 6 years old and had clearly been in the hospi…

Advice for the future

Below is an article I read that one of my facebook friends posted. Although it's written to Christian men who are currently dating, I think it has some interesting points to think about, whether you're single, dating, engaged, male or female. Relationships in general are complicated, so it never hurts to have a little Biblical-based guidance along the way!
How does a man decide whether or not to marry the woman he’s dating? Here are some tips for Christian guys to know if she’s "the one." "How do I know if she's the one?" I can't think of a question I encounter more often among single Christian men. The point of the question is clear enough. But a rich irony dwells beneath the question. In a culture that allows us to choose the person we're going to marry, no one wants to make the wrong choice. Especially if, as Christians, we understand that the choice we make is a choice for life. The question is not merely ironic. If what you're after is a ma…

Memories

I'm officially finished with my sophomore year in college. Where has the time gone?? Packing up my room yesterday was so bittersweet. I'm going to miss Baylor and all my friends over the summer! I won't see some of these people for three long months. However, I'm glad for the break from schoolwork. Don't get me wrong--I love all things related to school. But it's definitely nice to have a break from tests, projects, and papers for awhile. 

Looking back on this past year, I see God's faithfulness throughout my life. Journey with me for a second into my memories of the year.
1. God blessed me with the opportunity to lead a connection group at my church. I've grown so much in my faith through this because I've had the chance to explore what I believe more deeply. I have also gotten to meet some amazing men and women of God who have challenged me to pursue Christ with all that I am.
2. God also continues to bring people into my life who have blown me aw…

My poor skin

I cannot wait to be finished with my IV antibiotics. Granted, the IVs themselves haven't been that bad. The nausea has been manageable, and my port has behaved fairly well (at least, it's been well-behaved for my port). The worst part about this course of IVs has been dealing with the tape. The most common form of medical tape is called Tegaderm. I used to use this kind of tape on my PICC lines until my skin reacted violently against it a few years ago. So, I switched to IV3000. That tape has been life-saving for my skin. I managed to have many PICC lines and port accesses where my skin has stayed healthy. I hoped IV3000 would not have the same problems as Tegaderm. I mean, surely my skin can't react as badly as it had previously, right?

Wrong.
This past week and a half, my skin has gotten worse and worse. It is red and is covered in all these itchy bumps under the tape, but I can't do anything about it. My port has to be Protected somehow, and currently, I'm "…

Limits

This has been the semester of realizing I have limits. Here's how it has gone down, in dialogue form:

Me: This semester is going to be so great! I'm feeling on top of the world right now. Nothing's going to stop me!
CF: Oh, you think you can go to Passion 2013, get very little sleep, skip treatments, and then NOT need IVs? False.
Me: Whatever, I can handle doing IV antibiotics while starting a new semester. No big deal. Passion was the absolute best thing for me to do this Christmas break.
CF: Handle this nausea with the IVs, why don't you?
Me: No problem.
CF: Oh, you think you can balance Sing practice, school, work, church, friends, phi lamb, and CF? Let's see how you handle the flu.
Me: Okay, that one was rough. But it's okay, God helped me through.
CF: You're STILL trying to do everything like a normal person? What's wrong with you? Maybe severe anemia will make you realize your limits.
Me: I'll drop Sing and start taking iron supplements.
CF: …

CF Awareness Month

It's officially May 1st, which means it's Cystic Fibrosis Awareness Month. Because CF is a rare disease, very few people know about it who are not directly affected. CF Awareness Month is a time set aside each year to spread the word about cystic fibrosis, what it means for those who deal with it on a daily basis, and how people can help find a cure. In the spirit of the month, I've dedicated this blog to posting pictures that I've found on the internet that are working to raise awareness of our fight. I encourage you to post these pictures on Facebook, twitter, or Instagram so that your friends and relatives know that you're working to find a cure for CF!