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Showing posts from January, 2013

Breathe Hope Baylor

I am starting an organization at school this semester called Breathe Hope Baylor (BHB). BHB is an organization designed to raise awareness about cystic fibrosis in the Baylor community. When I came to college, I was surprised at how little people know about the disease I struggle with every single day. I grew up with a loving family and wonderful support system, so I never fully realized how unaware the world is about rare chronic illnesses. I find myself having to repeatedly explain what CF is to professors, peers, and coworkers. It's difficult living with CF because I don't "look sick". That makes it harder to explain CF because my battle is internal, and I try not to let weakness or exhaustion show. I've had many people unwilling to believe that I have a disease because they flat out can't see my illness.

I am so excited about BHB. Everything is falling into place for the group! Our first official meeting is tomorrow evening, and our first official fundrai…

DWYL

DWYL. Any guesses for what that stands for?
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If you guessed, "Don't waste your life", you're correct!

What does a wasted life look like? To me, it is being incredibly lazy and having hardly any work ethic. It is having a complacent attitude. It is sitting on the couch, watching TV day in and day out. It is living a life that doesn't show the world God's goodness and grace.

I don't know about you, but when I'm on my death bed, I don't want to look back and regret the way I lived my days. I want to hear God say, "Well done." I desire for my life to be worth something!

I pray to God that He uses me to further His kingdom. I pray for divine guidance and direction. Most of all, I pray for a productive life.

My challenge to you: DWYL--you only have one life to live on earth, so make the most of it.

Free!

I'm finished with my sixteen day course of IV antibiotics!! Unless you go through regular IV therapy like I do, you probably don't understand the sheer joy I feel because I'm disconnected from my port for awhile. So let me just tell you, it is wonderful. I can shower without worrying about getting the tape wet. I can exercise with greater ease. I can even sleep on my stomach again! I'm no longer restrained by my schedule (antibiotic schedule, that is).

Don't get me wrong, I needed those IVs. Without drugs as strong as IV
Imipenem or IV Colistin, I would not have the same quality of life I do now. They keep me from being chained to an oxygen tank, and I am so grateful!

But even though my heart overflows with thankfulness for scientific and medical research, I am SO happy to be deaccessed from my port (at least for a little while!)

CF Roundtable

Quarterly, I receive a newsletter called CF Roundtable. This newsletter is for adults with CF or adults who take care of others with the disease. My mom has been getting the Roundtable for while, but I only began looking at it a couple of years ago. The newsletter is enlightening, and it's an encouragement to me to read other CFers stories.

The Winter 2013 newsletter just came out this past weekend. While reading it, I was given such a desire to continue to live my life to the fullest every day, just like countless other people with CF are doing. One of my favorite articles from the winter edition is posted below. Chris summed up my feelings about living with a chronic illness pretty well. Take time to think about his article and examine your life. Are you living every day as if it were your last and maximizing your everyday life?


What does it mean to fight CF? This phrase, which I see and hear all the time, has lost its meaning for me. I can understand the desire to label CF as “e…

Flu season

It's the time of year all CF patients hate and dread--flu season. The flu is bad enough for people who have normal respiratory function, even worse for those of us who struggle to breathe normally. To try and prevent the flu, I always get the flu shot, and this year was no exception. Because the virus mutates every year, scientists have to make an educated guess about how to best make the shot. Therefore, the shot is not always effective. You still have to be careful around infected people.

If you have the flu, please do everyone a favor and quarantine yourself until you are no longer contagious. One of my biggest pet peeves is when people knowingly expose others to bad illnesses. Keep in mind that it is rude and seems very selfish to come to class or work with the flu. No one else wants to get sick, and you never know how that illness might effect others. So please, wash your hands, take your vitamin C, and stay away from others if you are sick. We will all make it through the f…

Is it really only Wednesday?

Hey blogging world! Long time, no chat. Do you ever have one of those weeks that seems to drag on forever and ever? It's not necessarily a bad thing, but even still you just can't seem to keep track of what day it is because each day feels like 48 hours. That's the kind of week I've had this week.

Hence why there's no way it's only Wednesday.

Between starting back to school on Monday, going to job training every day this week, staying up late and getting up early to do IV antibiotics, going to Sing Alliance practice, and doing regular readings and homework for my classes, I feel like I've been running in circles. I think it takes a week to get back used to managing work and school and social events in normal circumstances. The transition from being able to do whatever you want, whenever you want to having to be on top of things and motivated to get stuff done is definitely a challenge for many people. Being completely upfront with you, I usually don't s…

Blood draws

I thank God for the invention of a port. Even though my port has not always cooperated with me, I am still so glad I have it! My port has allowed me to start my IV antibiotics from home instead of going in the hospital to have a PICC line placed. I don't have to deal with the disgusting feeling of the PICC line slithering through my vein and out my arm at the end of the two to three weeks of therapy. It's a lot easier to keep my port dry than to keep my PICC line arm dry. I can use both arms in the shower (you don't know how much easier it is to shower with 2 arms!) My chest isn't nearly as sensitive to the tape as my arm is. And, most importantly, I have easy access to blood through my port whenever I need levels drawn instead of nurses having to stick me multiple times, trying to find a vein. My veins have been so used and abused over the years, they are now minuscule in size and roll away from pressure points. Needless to say, it's pretty much impossible to hit …

January IVs

Before heading back to school, I decided to start on a course of IV antibiotics. It's pretty typical for me to be on IVs twice a year for what we CFers like to call a "tune up". Tune ups are regularly scheduled IV antibiotics that help the lungs continue to fight infection. They are like reinforcements in the midst of a battle. I go on IVs so often because the bacteria in my lungs is very resistant to medicine.

Unfortunately, as my body has gotten older, it has also become weaker in not feeling the side effects of medicines. As a child, I was hardly ever nauseous with IVs, even though the antibiotics are heavy-duty drugs. Now, I get nauseous without fail. I feel slower and weaker when on the medicine. I also am fatigued quickly. I know the medicine is working for my body and doing its best to fight CF, but it sure does take its toll on me.

I will be doing a week of home IV antibiotics while I'm at school. This is a big step for me because I've never done IVs co…

Passion 2013

If you're wondering why I haven't blogged in awhile, don't worry, I haven't fallen off the face of the planet.

Or been in ICU with a serious lung infection.

Or been being a bum laying around watching TV.

No, I've been at the Passion 2013 Conference in Atlanta, Georgia with my church in Waco. We left Waco on a charter bus on December 31 at 9:00 PM and arrived home yesterday morning. I can honestly say this trip was the most exhausting, challenging, exhilarating, redeeming, incredible trip I have ever been on. God rocked my world. I will try to explain the last few days for you as best as I can, but words cannot begin to express how great our God is or how much He moved this past week.

Sixty thousand college students attended Passion in the Georgia Dome. That's right--60,000 18-25 year old students pumped about Jesus. One of my favorite aspects of Passion was getting to worship with all these people and sing praises to the Lord Most High. It was like getting a ti…