Wednesday, April 30, 2014

IV meltdown

Sometimes, life throws a rock at your face. Today, I feel like I've been hit by a boulder. 

I started IVs yesterday. They were off to a rocky start when my home health nurse had to poke me five times to finally get my port accessed and working. I always have one problematic experience when I'm on IVs, so I thought the rest of the course would be a breeze. Boy was I wrong.

Today, I woke up feeling very disoriented and weak. I couldn't walk in a straight line, and everything felt weird. As it turns out, the home health medicine providers did not give instructions on how to mix the medicine to the correct dosage. I received double doses of the medicine all three times I had administered the medicine. I realized I was experiencing overdose side effects. 

The rest of today has been a battle for me. I feel like a kid trying to learn to walk again. I can't hold on to anything because I'll drop it. And all I've done is sleep, eat, sleep, take a test, sleep, and go to church. I'm discouraged. Why can't I have a normal IV course, just once? Why can't people do their job and put directions on bags so I'm not overdosed? 

Church tonight reminded me that we don't know God's plan. He allows all things to happen--just look at Job. Suffering and hardships happen to serve the overall purpose of God. I can't see. His plan or know all the details, so I'm just trying to trust Him and follow His guidance even in the midst of an accidental IV overdose and frustration beyond belief. 

If you think about it, please be praying for me these next couple of days. I appreciate it!

Tuesday, April 29, 2014

#CFlife

As this semester has unfolded, my health has remained pretty steady...until about two weeks ago. I haven't been able to breathe through my nose since February; after I got a cold, my nose never cleared even after doing antibiotics and nose sprays constantly. However, about two weeks ago, I started struggling to breathe because of infection in my lungs. I began to get out of breath walking up stairs and going from class to class. I started losing my willpower to work out as often as I should. I even began taking naps and sleeping way more than normal because of a lack of energy. Of course, my coughing also increased dramatically.  Therefore, I decided I needed to start a course of IV antibiotics as soon as possible, which happens to be today. My body is exhausted and needing backup, tired of having to fight multiplying bacteria. 

I would really appreciate your prayers as I go through this course of IVs. The last time I was on IVs, I was incredibly nauseous and threw up pretty regularly. Pray for a strong stomach. Pray for the IVs to work their magic and for my lungs to recover. Pray for my body to fight the bacteria off well. Most of all, pray for my spirit to stay strong and for me not to get discouraged. Thank you all so much for your love and support! 

Tuesday, April 22, 2014

A Story

I love hearing about other people's stories. Everyone is so unique, and we can all learn from each other! I especially enjoy hearing about other CF patients. Because CF is such an isolating disease, I really don't know very many people with CF. The CF Roundtable, an online newsletter for adult CF patients and their families, encourages CFers to send in their stories or their articles for the newsletter. Below is a story from a fellow CFer named Anne Willliman. Her article was published in the most recent newsletter. I enjoyed reading her story and seeing how different it is compared to mine. No two CFers are alike! Here's her story:

Last spring, I reached a huge milestone for me – I hit 60 years old. Yeah, I know that’s still young – or at least middle-aged for most. But when you have cystic fibrosis, hitting that age is pretty amazing. For all you young things out there, let me introduce you to the world of a Senior Cystic (thanks to Julie Desch for the term!). During my first few years of life, back in the dark ages, my parents knew something was wrong. My lungs were fine, but I just didn’t grow. The doctors they took me to thought it was allergies or some other stomach ailment. Finally when I was five and we were living in Indianapolis, someone had the bright idea to test me for CF. Sweat tests were a little different back then. I was stuck in a plastic bag from the neck down and lay there for hours, letting the sweat collect. I remember my mother reading The Little House on the Prairie to me as we waited. After the required number of hours, the nurse told my mother I could get dressed and go. Unfortunately, it was a cold day. Mom questioned the wisdom of sending a sweaty child out into the weather, but the nurse assured her it was okay. So off we went. Next thing I knew, I had pneumonia and was back at the hospital, this time as a patient. Mom was always convinced that sending me out in the cold without giving my body time to cool off was to blame.

There was an oxygen tent draped over the head of my bed, and I remember cramming my entire body into it when they came to give me a shot. I got over the pneumonia, but the sweat test resulted in a diagnosis that wasn’t going to change. I had CF. At that time, the doctor could tell my parents only that I wouldn’t live to reach the age of 10. He gave them digestive enzymes for me and told them to try to give me a happy, though short, life. Of course, my parents were devastated. But they were people of faith and weren’t willing to give up. Shortly afterwards, we moved to Columbus, Ohio,
and they heard about a doctor in Cleveland who was trying different things with CF patients. Many of their new friends in the CF parent support group weren’t interested. (All of their
children later died from the disease.) But Mom and Dad drove the two hours to see Dr. LeRoy Matthews at the Rainbow Babies and Children’s Hospital. I liked him – he was a kindly,
soft-spoken man who seemed to really care about me. But suddenly I was living a different life that included postural drainage, where my lungs were pounded by hand several times a day while I lay head down on a tilted table. I had to sleep in a mist tent at night, which covered the top of my bed and left me with wet hair every morning. And of course there
were all the pills, nebs and trips to see the doctor every six weeks. 

I had a rough year for first grade. I missed two-thirds of the days of school due to illness, and there was talk of making me repeat the grade. But Mom worked with me at home and I was able to go on to second grade. The years passed and my life was pretty normal, in spite of all the CF treatment I received. I was starting to have issues with my lungs but nothing bad enough to be hospitalized. There were birthday parties, proms, a driver’s license and, finally, graduation. I decided to attend a
private college several hours from home, which meant I would shoulder the whole burden of CF. But I was ready for that. We found a student at my college who was studying to be a physical therapist and hired her to do my postural drainage each day. Amazingly, she was from Cleveland and was able to go to the hospital there to get trained how to do it. We moved the tilt table into the dorm basement
and met every day. I brought my mist tent, too, and every few days had to clean the equipment that produced the mist. That meant washing it all and running white vinegar through it. My roommate couldn’t stand the strong vinegar odor and insisted that I stick the hose that was pouring white steam out of the window. I wonder what people driving by the dorm thought when they saw the steam?

College life was great and the best part was meeting Jon. We decided to get married the summer after my junior year. The night before our engagement party, my mother took Jon aside and spelled out the realities of CF. “You will not have a long marriage,” she told him. But Jon was ready to go ahead
anyway. The wedding took place and I started my senior year of college.

Sometime that spring, I was suddenly struck with the understanding that I had a fatal disease and would not live to see middle age. It greatly troubled me, but after thinking and praying a
lot about it, I was able to accept that my life was in God’s hands and He would keep me until it was my time to go. Little did I know that 40 years later, I would still be here! After a few years, Jon and I decided we were ready for children. Back then, I was told a pregnancy would be
very bad for me and we went with adoption. We were placed with a sweet little baby girl whom we named Amy. She was perfect. When she was about three, the day finally came when I had to be
admitted to the hospital for two weeks for a clean-out. I was 29 and it was my first time. I was two hours from home and had never been away from Amy for overnight. It was horrible. Back in the day, CF was a children’s disease. So I was in a children’s hospital, even at my age. As Jon, Amy
and I walked out upon my discharge, the receptionist smiled sweetly at us. “I bet you’re glad to be taking your little girl home,” she gushed. Jon and I glanced at each other. Then we smiled at her and kept walking. She didn’t need to know that I had been the patient.

At some point, it was determined that the mist tent was not helpful and I no longer had to put up with it. (Jon was delighted!) But we still did the postural drainage every night. Amy had watched from her baby swing at first. Later, she came over to us as Jon pounded away, cupped her little hands
and “pounded” my chest too. The years passed. We adopted two more babies, both boys, and life went on in a blur of laundry, sports, school, ballet lessons and church. I worked part-time as a freelance writer, selling more than 700 magazine articles and three books. We traveled to many states as well as took trips to countries such as Brazil, England and Israel. And yes, there was always CF.

As I aged, there were complications: GERD, osteoporosis, CF-related diabetes and lowering lung function. That meant more hospital stays (finally in an adult hospital), more drugs,
more treatments. It affected the kids, too. More than once, they asked Jon, “Is Mom dying?” But somehow, I always pulled through.

So that takes me up to now. My children are all grown, married and with kids of their own. Things have come full circle – the other day my two-year-old grandson watched Grandpa pounding on Grandma and cupped his little hands and “pounded” on me too. (Yes, I have a Vest, but I like
the postural drainage better.) Though I have lost a lot of lung function and strength, I am still here. The future of CF looks brighter than it ever has, although I do remember my mother telling me when I was a teen that we were on the edge of a breakthrough
for CF back then. Now, it appears that’s really happening. I do believe that younger people with CF have every reason in the world to think they will live to reach 60 and beyond. If I can do it, it's possible!

For more information about CF Roundtable, go to www.cfroundtable.com

Tuesday, April 15, 2014

New creation

Have you ever been super excited about something--I mean jumping up and down, wanting to tell the whole world excited--yet no one else seems to fully comprehend why you're going so crazy? Let me give you an example. This past weekend, I went to Texas A&M's ring weekend. My twin sister, Katie, got her Aggie ring, which is monumental at A&M. Sure, it's cool to get your ring at other schools (I got mine from Baylor last fall), but at A&M, you look forward to getting your ring starting at fish camp before freshman year even begins. The anticipating builds and builds until you have FINALLY completed 90 hours and are eligible for that Aggie bling. The day of the Aggie ring ceremony is full of excitement and chaos. After you get that ring (with thousands of your closest friends), you probably have a ring dunk ceremony. At the ring dunk, you put your Aggie ring in a pitcher of any liquid of your choice. You then proceed to chug said drink as fast as you can until the liquid is all gone and you catch the ring in your mouth. Because you're chugging liquid so fast, you will probably either spit a lot of it out or throw up, all seen by your friends and family, of course. Then, BOOM, you're officially part of the Aggie family and can show it off to the world by the ring on your right ring finger. 

The ring dunk probably sounds crazy to people who haven't been around the tradition. Hey, it even sounds crazy to some Aggies! Why in the world would you want to put your new, shiny ring in a pitcher of liquid, chug it, and potentially throw up in front of everyone you know? I can't explain it. But let me tell you, those Aggies get SO excited! I've never seen a group of people so pumped about such a strange and disgusting thing (sorry Katie) in my life. The hype around the tradition just doesn't make sense, but that's because I'm not actively a part of the Aggie life or any of the traditions involved. 

I had an epiphany on the drive home from College Station. As a Christian striving to obey Christ and follow Him, shouldn't my life make about as much sense to a person who's not a Christian as an Aggie rink dunk makes to any non-Aggie? 2 Corinthians 5:16-17 says, "from now on, we regard no one according to the flesh. Even though we once regarded Christ according to the flesh, we regard him thus no longer. Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come." As Christians, we can love others with a kind of love that's completely foreign to people who are not in Christ because we are a new creation. They should look at us and be confused as to how we can love ALL people with such a powerful kind of love. Hebrews 13:6 says, "So we can confidently say, 'The Lord is my helper; I will not fear; what can man do to me?'" We have no reason to fear the future, which is completely countercultural to today's society. The world tells us to race forward to make a legend for ourselves as fast as possible so that OUR names will continue and tells us to ensure that our names are superior to all others. The Bible tells us that our fears of man and temporary things are unnecessary--the Lord is by our side, and glorifying His name is the only thing that matters in this world. Matthew 23:11-12 says, "The greatest among you shall be your servant. Whoever exalts himself will be humbled, and whoever humbles himself will be exalted." Christians are called to be servants and to humble ourselves, while the world says to build your ego up as much as possible and to do everything you can to get ahead. 

The world should not understand the way we live our lives. They should look at how excited we get about Jesus and stop to wonder. They should think we're a little crazy for our actions and attitudes, because that's just not "how things are done". Back to the Aggie ring dunk. The whole weekend made no sense to me because I'm not an Aggie. But to Katie, that day was probably one of the highlights of her college career. Now, think about your life. Does it make people who don't believe in Christ wonder about you? Is living for Christ's glory by following Him the purpose of your life? Do people outside of the Christian faith struggle to understand why you make sacrifices, why you love like you do, and why you serve others with such joy? 

 Lord God, thank you for making me a new creation in you! Change me from the inside out.