Blue-Eyed Breather

I'm making it! Just a few more days and I'll be back home and starting IV antibiotics. It's probably a little sad that I'm counting down the days until I start a course of antibiotics. I mean, really? That's not normal. But hey, that's one of the costs of CF life.   Many of you don't know what it's like to think that a routine schedule of IV antibiotics is normal. Heck, most of you have probably never been in the hospital yourself. I know that you must feel at a loss as to what to do when your friends or family members are in the hospital or are receiving IVs. Lucky for you, I have some experience. Obviously, these tips aren't useful in all cases. They are just ideas I've come up with over the years when dealing with people who want to help me but don't know how. 1. Never ever ever say you know what they're going through. Everyone's situations are different. If I hear one more person say, "I know how you feel", I might screa...

"Rejoice always, pray without ceasing, give thanks in all circumstances"--Thessalonians 5:16-17.  Today is one of those days I do not feel like rejoicing at all. To begin with, this week has been absolutely jam packed with assignments and activities. All of those things are good things, but my busy schedule has led me to feeling exhausted. Add on top of the exhaustion the freezing cold weather, which has felt pretty miserable while trekking across campus. And finally, I am struggling to breathe. My lungs started hurting yesterday, and all day today I've been gasping for air and attempting to force myself to take deep breaths. If you saw me today, you would know it has not been one of my better days--I'm a mess! How in the world am I supposed to rejoice when I feel like my physical body is falling apart? How am I to be joyful when the only thing I can concentrate on is my next breath? These are the questions I ponder now as I'm writing this blog post. Rejoicing ALW...

Before you continue reading this post, I must warn you--it is full of sarcasm. I apologize; I'm in a sassy mood today. The good things about having an orphan disease: 1. If you tell someone about your disease, they often look at you like you're an alien. Hey, it's cool, I can be an alien. 2. If people have only heard about CF from their biology class, they think you're going to die any second, bringing on very entertaining bouts of freak-out moments. 3. You have a pretty good excuse to get out of physical activity, if you so choose to take it. ("I can't, my lungs will explode if I run). 4.  People question if you're actually sick because you don't look like their definition of "diseased"…. But really, this is actually a plus sometimes. I don't want people to see me and automatically associate me with sickness. 5. You have to explain your orphan disease in baby steps. People can't take in new information all at once. You mus...

One of the biggest inconveniences of having CF is the difficulty in traveling with all of my heavy equipment. Want to road trip for a day? You have to grab at least the puffer and flutter, along with pills and water. Want to spend the night somewhere? You have to evaluate if you're healthy enough to skip doing a Vest treatment or two and just use the puffer/flutter. If you are, you have to take that breathing stuff, pills for two days, a separate pill container for the pills taken at times other than mealtimes, kleenex, juice and snacks for blood sugar and calorie purposes, insulin, and anything else one might need for an overnight trip. If you're not healthy enough to switch out a Vest treatment for a puffer/flutter, you have to also take the Vest, Vest machine, and nebulizers and machine, along with inhaled medicine. Going on a trip any longer than that and, well, you might as well sit down and write a packing list so you don't forget anything vitally important. Usually...

I hate not being able to sleep. And yet here I am at 3:29, trying to do something that will distract me from the anxiety cycle about not being able to sleep. Here's kind of how it goes: I really need to sleep. Why am I not falling asleep? What's wrong with me?! This is a serious problem. What am I going to do tomorrow? I can't function without sleep. Crud. Wait, I need to stop thinking about this. Don't think about not being able to sleep, don't think about not being able to sleep.  Don't do it!! ...I really need to sleep. It's a bad cycle to get into. If doesn't help matters that I have a cold and know that I need sleep to fight off infection or that I am coughing and sniffling, which makes it harder to sleep. Body, PLEASE cooperate with me! God, give me rest. Because I really need sleep.

"As I lose lung capacity, I find that fewer things are fun to do. So many things take too much energy. I like to save my energy for things that make me happy."--CF Roundtable blog You know what is scary for me? Thinking that I may not have the energy to keep doing the things I find enjoyable. I know that eventually, this wearing down happens to everyone. You get old, your body needs sleep and rest. You can't keep up with the same pace of life as when you were young. But for most people, that doesn't happen until the later stages of life when EVERYONE is slowing down. You age gradually with your friends. CF patients, however, tend to slow down a lot quicker than average. It takes so much dang energy to breathe and for our bodies to function at all! We clearly need more sleep and rest to keep going. Our energy reserves get used up in a hurry. But right now, I'm still able to live an active life. I go to school, work, go to church activities, hang out with frien...

PFTs-60%!!! Finally back in the 69s club, woo! Weight/appetite-Good (Two good weight checks in a row..what is this?) Symptoms-increased cough and sputum production Plan of Action- oral Bactrim for 2 weeks Today, I went to my regular CF check-up. I am proud to say that my PFTs were slightly improved, my weight was stable, and Dr. Fullmer told me that I should write a how-to book on managing CF in college. Honestly, CF appointments always make me a little anxious. I detest being "judged" on my "performance" based on a set of numbers I do not have full control over. Maybe that's the control freak in me coming out, I don't know. I do all I can to stay healthy, but sometimes it's just not enough. When I have a bad report, I feel disappointed in myself, almost like there was something I should have/could have done better, even though I know that's not the case. CF is so unpredictable, as well! I could be feeling great and have awful lung function...

If you are in anyway connected to the CF world, you will think the following video is absolutely hilarious. I saw it a few days ago thanks to my mom. I was pretty glad I watched the video alone in my apartment because I'm pretty sure my roommates would think I was crazy due to my excessive laughter.  Seriously though, I related to the video so much!! I just wanted to share it with all my friends so that they could understand more about my life (which I guess is why I'm posting it on this blog). I dare you to watch the video and not crack a smile--I don't think you can. :) If you do not know much about CF or are new to the disease, you may find the video strange and maybe even a bit disturbing. Think of it this way; CF affects every part of a person's body--the lungs, the digestive system, the pancreas, iron levels in the blood, the reproductive system, the bones, the nasal passage, the chemicals in the body, etc. Pretty much every system. When you watch the video, ...

Most of the time, I don't want anyone to know I have CF. I have no desire for people to know how hard it is for me to breathe sometimes or how much pain I'm in when I forget to take my pills or my stomach just decides not to cooperate. I hide how my health is doing from the majority of people, simply because it's impossible to explain CF fully enough to do it justice to a healthy person. However, there are definitely times I wish everyone knew about my CF totally and completely. Take today in anatomy and physiology, for example. I sit in the 2nd row in the middle of the room. We are pretty packed in that room, so naturally I am surrounded by peers. I had a minor coughing fit before class started today. Nothing big, just a few typical CF coughs. After the spell had passed, the chick who sits in front of me turned around, glared at me, and then purposefully scooted her desk a good six inches forward. I kid you not, there was a considerable amount of room between her desk and ...

Today, Novartis and the Boomer Esiason Foundation sponsored a webcast about CF patients planning for college and beyond. (If you would like to watch it, the webcast will be uploaded on the Boomer Esiason website in a few weeks). More CF patients are going to college, getting married, getting a job, and living into retirement. Because of this, CF patients need to think about the future and know how to balance CF with the craziness of life. There were three people who spoke on the webcast--Gunnar Esiason, who just graduated from Boston College, Ginny, a mother of two daughters with CF, and a CF social worker.  It's encouraging to see these people managing CF with college and "grown-up life".  Because CF patients don't have much face-to-face contact, it's difficult to know how other CF patients are managing everything we must deal with.  I loved several points said on the video. Gunnar, Ginny, and the social worker all stressed the importance of having strong soc...

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 pie...

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 supplemen...

In recent years, my body has not responded to lung infections as well as it used to. I get low-grade fevers, aches, and have difficulty breathing. It's like I'm taking a beating! Unfortunately, after being on steroids for five days, all the junk in my lungs has been stirred up. Since Thursday, I've been flat out exhausted, and my cough has gotten significantly worse. And now today, I have a slight fever. Boooo. Because I'm already on oral antibiotics and the bacteria I grow is resistant to almost every drug available, I'll be starting IVs this coming week. I was hoping to postpone the meds until after school gets out in the middle of May, but with the way I'm feeling now, that's just not possible. This will be my second time to do IVs on my own without constant parental assistance. I know I can administer the medicines no problem and that I'll be fine remembering my IV schedule. However, it's frustrating that I'm needing to deal with illness now....

Man, it's just been one of those weeks when everything seems in shambles and nothing is going the way I thought it would (except school, which I am very grateful for. If my GPA was falling apart on top of everything else, I'd be having a meltdown). In actuality, I know in my head that life really isn't that bad right now. I'm doing well in all of my classes. I'm surrounded by an awesome group of friends. I have a fantastic job. I go to an wonderful, challenging school. And I'm loved by the King of Kings. However, the rest of me hasn't gotten the message to count my blessings. I've never felt such overwhelming frustration before. My port's acting up again, my health is on a downward spiral, I haven't slept well in weeks, and I have this looming stress about figuring out my plans for summer school. Like I said, in the big picture, my life really isn't falling apart. So why am I feeling like it is? Fabulous question, one that I do not know the...

I think the kind of stomach pain I get from CF related problems is one of the worst feelings I've ever experienced. Not only can I not focus because of the pain, but it literally feels like a knife is piercing my insides. I can't breathe deeply, I can't stand up straight, I can't live my life. I'd say I have a fairly high pain tolerance, so when I say I'm in major pain right now, I mean it. I know I'm having problems with my stomach today because of my own stupidity. This past weekend, I went to a retreat with my sorority. We pretty much ate junk food the whole time, and, I admit it, I didn't take enzymes when I should have. It didn't even cross my mind, I guess since we were snacking here and there. Because of CF, I can't digest ANYTHING without my enzymes, but eating all that fatty food without help from the outside was idiotic of me. Now, I'm definitely paying the price. I like to think that I'm "normal" and all, but clea...

Ahh the CF cough. It's recognizable by pretty much every CF patient, family member, and caretaker. "Normal" people tend to run the other direction when they hear our body-shaking coughs, afraid of contacting some horrible cold or flu virus. But alas, we are not contagious. We cannot suppress the urge to cough...and cough...and cough. And we certainly don't need your freaked our stares. We are just CFers, and the distinct cough you may hear is normal for us. I've had people tell me that they didn't know such a sound like my coughs could come out of such a small person's lungs. When I cough, it's not one of those cutesy coughs that a delicate girl trying to act properly would let escape because of a tickle in her throat. No, I'm the exact opposite. I sound like I'm hacking up a lung. I know what you're thinking--so attractive. Hence the reason for all the breathing treatments. I feel like I'm constantly doing treatments, maybe because...

20 Things CF has taught me: 1.Time management 2. How to swallow 8 (or is it 9?) pills at a time. 3. Attitude is everything. 4. Life is precious. 5. Being a control freak does not mean everything will turn out perfectly. 6. But it's still important to plan. 7. Fully rely on God!! 8. How to say and spell long names of random bacteria and medicine that no one else will ever know. 9. The abundance of germs in society. 10. I can't do everything on my own. 11. Be responsible. 12. Breathing is kind of necessary. 13. Take joy in true friendships. 14. Prayer is insanely powerful. 15. Serve others. 16. Don't get caught up in your own struggles. 17. In keeping with number 16, know that life isn't fair. 18. Be dedicated to whatever you do. 19. It's okay to get upset. Believe it or not, it's even okay to cry. 20. Live each day to the fullest, laugh and enjoy life, love others like crazy.

A week ago, I got blood work back that didn't look very good. My hemoglobin number had dropped from 11.3 to 9.5. The bottom range of "normal" hemoglobin is 11.5. Immediately, this became a cause of concern. My doctors don't know exactly why my hemoglobin level is so low. After another blood draw, my iron level came back at half the number it is supposed to be. Obviously, this is a serious problem. My GI doctor is concerned I may be bleeding internally. As soon as possible, I am supposed to do a test where I swallow a pill camera that will show the inside of my entire digestive tract so that he can look for abnormalities. For now, though, I have started on an iron supplement and am trying not to overwork myself. The blood work indicates that I am severely anemic. This could explain why I've been so darn exhausted lately. At times, I've had to fight my body to stay awake, even though I'm getting at least eight hours of sleep a night. I know this is not how I...

The Boomer Esiason Foundation is well known in the CF community for raising millions of dollars for the CF Foundation. Boomer Esiason's son, Gunnar, has cystic fibrosis, which was the motivation for him to start the foundation. The foundation also gives out many scholarships to deserving college students (who just so happen to have CF and fight the disease courageously.) One of the scholarships, called Sacks for CF, is a $10,000 scholarship given to a handful of CF patients at the end of football season. During the season, with every sack that occurs on Monday Night Football, an amount of money is donated to the scholarship. Then, the scholarship committee chooses a certain number of recipients based on the total amount of scholarship money available. This year, I am one of the recipients!! I got the call this morning. I am so excited! Boomer himself will also announce my name as a recipient on the radio between the first and second quarters of the big game. How cool is that?! ...

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 de...