Breathing Deeply: My Life With Cystic Fibrosis

My optimism wears heavy boots and is loud. --Henry Rollins About 5 years ago I requested sturdy work boots as a Christmas gift from my parents. At the time I was working in a research facility and was also doing occasional field work. The field work required me to climb around on scaffolding to work with air sampling equipment and I figured it was a good idea to have decent, protective footwear. My parents went all out and got me a pair of Stanley steel-toes. They are clunky and ugly, but I love them! They are disgustingly un-feminine and certainly heavy, but they hold up extremely well. I used to get a lot of laughs when I wore those boots to class on days that I was going to be working afterward. People asked me all the time if I worked for the phone company or something. Well, today I can finally say that yes, I wear these boots when I work for the phone company. I'm currently involved in a project that requires visiting a few AT&T facilities. Whenever I do field work such as this, I like to look the part. I don't have a particularly commanding presence (5'4, 120 lbs) so anything I can do to make myself look more professional is a bonus. Today I put on my best fitting khakis with all the crazy pockets, my blue polo shirt sporting our company logo, and my Stanley Steel-toes. Ahhhh yeahhhhh. I love my job. --- Current mood: confident Current snack: ice cream with Magic Shell Health-O-Meter: 89% of baseline (mild asthma symptoms today)

Emotional weather: clear and sunny

If there are no stupid questions, then what kind of questions do stupid people ask? Do they get smart just in time to ask questions?

1. Grab the book nearest you, turn to page 18, line 4? The concentration of air molecules trapped in the cup and lungs is indicated by the density of the dots. (Turco, 18).

2. Stretch your left arm out as far as you can. What can you touch? 3-hole punch

3. What's the last thing you watched on TV? Malcolm in the Middle

4. Without looking, what time is it? 3:00pm
5. What time is it actually? 3:02 pm

6. Except for the computer what can you hear? The ringing in my ear, the HPLaserjet, Gary’s squeaky chair, Joel’s phone ringing

7. When did you last step outside and what were you doing? I went outside during my lunch break

8. Before you started this survey what were you doing? Working on a FUDS report map for Ed

9. What are you wearing? Khaki pants, white collared shirt, blue and green argyle sweater
10. Did you dream last night? Yes, I did. I dreamed that Brad and I were pirates chasing Peter Pan.

11. When did you last laugh? Just now as I remembered that pirate dream.

12. What's on the walls in the room you're in? A calendar from the American Lung Association, my UC Riverside diploma, a large paining of a tree-shrouded walkway, a whiteboard listing all my current work projects, and a bulletin board with photos of friends and family.

13. Seen anything weird? The satellite image on the cover of “Earth Under Siege—From Air Pollution to Global Change” is backwards. The Persian Gulf points toward the wrong hemisphere.

14. What do you think of this quiz? Not too bad. One of the better quizzes I've experienced.

15. Last film or video seen? Anne of Green Gables--The Continuing Story

16. If you became a multi-millionaire overnight what's the first thing you'd do? Donate a portion of it to the Cystic Fibrosis Foundation

17. Tell me something I don't know about yourself? I lost my retainer at Denny’s

18. If you could change one thing about the world regardless of politics what would it be? I could go on for pages with my socio-economic ideas but that would start getting into politics. I would like to live in a world where Cystic Fibrosis is curable/preventable.

19. Do you like to dance? I like the night life. I like to boogie.

20. What comment would you like to make to George Bush? Trust in the Lord with all your heart and lean not on your own understanding.

21. Your first child is a girl what do you name her? Thing 1

22. Your first child is a boy what do you name him? Thing 2

23. Would you ever consider living abroad? Nope.

24. What do you want God to say to you when you reach the pearly gates? Well done, good and faithful servant!

25. Five people you want to do this quiz? *shrug*

A hero is someone who has given his or her life to something bigger than oneself.

--Joseph Campbell




Genentech, the pharmaceutical company that makes Pulmozyme (tm) has a program that honors adults with CF who are positive, impactful examples of hope and encouragement to others in the CF community. The Heroes of Hope award is given monthly. People who have been honored with this award include Beth Sufian and Michelle Compton. Both are names I recognize from their involvement with Adult CF resources such as cysticfibrosis.com, thebreathingroom.org, and the CF Roundtable.

The qualities of a Hero are taken from the program's website.

Who is a Hero?

A hero is a role model who portrays hope and strength
A hero takes intiative and pursues goals and dreams
A hero is motivated to live life to the fullest
A hero has a positive approach to life.
A hero uses his/her skills to help others as well as themselves
A hero contributes to the community

If you would like to learn more about the Heroes of Hope program, its mission, and how a hero is selected, please visit the following link: Heroes of Hope

GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year I am "virtually" participating in the event through a letter writing campaign. Please help me reach (and maybe even exceed!) my fund-raising goal of $10,000.00 by sponsoring me. Your generous gift will be used efficiently and effectively, as more than $.90 out of every dollar you contribute will be used to fund the vital programs of the CF Foundation.

Making a donation is easy and secure! Just follow the link below or copy/paste http://www.cff.org/Great_Strides/LaurenBeyenhof to find my GREAT STRIDES homepage that I've set up through the CFF. From there look for the "Click to Donate" button to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

Cystic fibrosis (CF) is a devastating genetic disease. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.

Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!

I am tired. My arm aches. My head boils. My feet are cold. But I am not aware of any weakness.


--Zane Grey






My body seems to be rebelling against me. I've been taking care of it, feeding it good foods, taking my meds, going to bed on time--still I guess it's not enough. Tuesday afternoon my right knee was aching. At first I though it was because I had worn high-heeled boots to work. But then during the night my left knee started aching so badly that it woke me up! I could hardly even hobble out of bed. It felt like someone had bashed me in the knees with an aluminum baseball bat.

They're still hurting. I took some AdvilPM to see if that would make much difference. I don't want to take anything too aggressive. I figured one AdvilPM had enough of the NSAID in it to to some good, and if all else failed, at the the PM part would knock me out so I wouldn't be bothered by the pain. Usually stuff that has a PM component to it doesn't knock me out. It just makes me really relaxed. We'll see how this works.

I'm frustrated that there seems to be no good cause for this joint pain. Typically when I have a problem like this, I feel achy in my ankles too. Perhaps this is a delayed reaction to all the meds I've been on lately. Maybe it's even some crazy new thing my body is doing because of hormones. Either way, I hope it doesn't last.

The spirited horse, which will try to win the race of its own accord, will run even faster if encouraged.

The man for whom time stretches out painfully is one waiting in vain, disappointed at not finding tomorrow already continuing yesterday.

I am very abnormal... But it wasn't very long ago that I wasn't so abnormal. I was very normal and headed for a lifetime of paying medical bills as proof of my normalcy.


--Dirk Benedict







Tonight was my CF clinic appointment that was supposed to determine whether the tune-up had been successful. I didn't exactly get a clean bill of health yet since I wasn't able to have PFTs done, but the good news is that I am no longer on the IV meds. My energy level was plenty high today, and my weight was better than it was when I was admitted to the hospital at the beginning of July. I think it's safe to say that this tune-up is now complete. The PFTs tomorrow will just be a formality. Come Monday I will happily return to the office and the work that awaits me, but first I plan to take advantage of the next few days.

I hereby declare myself officially on a vacation. I will rest a bit more, enjoy our new home, and basically just relax. I've earned it.

Oh, and by the way, today was also the anniversary of when Brad proposed marriage. Pretty nifty, eh? Three years of marriage has been awesome. I'm glad God brought the two of us together. I can't imagine a better life--at least not one this side of eternity.

Sam: Nobody likes the whites, but we're going to Cuba in August. You got Dramamine?

Kaffee: Dramamine keeps you cool?

--A Few Good Men

Ahhh....I didn't realize what a world of difference just a few degrees could make. The contractor came out yesterday and installed out new air conditioner and things have been so much more comfortable around here. Instead of sitting around doing nothing for fear of dissolving into a puddle of sweat, we've been making good progress getting things put away in the new house. I managed to get the drapery rods put up in the bedroom without wrecking the wall. The real shocker is that it's all level.

I was excited last night when I counted up the number of IV meds left in the fridge and determined that I would be finished by Wednesday. As it turns out, I'll have another two days. The home healthcare delivery guy showed up today with more supplies and meds. Yippee. Excuse me while I jump for joy. I have an appointment with the doctor tomorrow night, and I think I'm going to ask that we just discontinue the meds. Maybe I'm just anxious about being done with the IVs, but I think the Tobramycin is making me weird. Every once in awhile I'm off-balance, and my ear seems to be ringing more than usual. Of course, that could be my body chemistry getting readjusted, but you can't be too careful with Tobra.

Lung wise I'm doing a lot better too. I'm able to laugh and talk without having to catch my breath. Now that our house isn't a kiln, I'm not as hoarse either. Air conditioning has so many wonderful benefits! Even so, I hope that the weather starts cooling off a bit. I don't particularly like the thought of returning to work and having to do field outings in such muggy weather. The schedule has me signed up to go to Phoenix at some point soon. Ugh.

We cannot waste time. We can only waste ourselves.








I don't know what happened. I had been doing so well the last few days, and then WHAMMO! I was only awake for about 4 hours total today. I went to bed last night not feeling particularly great, but by the time I woke up for my 6 a.m. "feeding" (aka my IV meds) I was so completely out of whack. I told Brad that I wasn't feeling well enough to be able to make it through church, and then I climbed back into bed. I don't even remember hearing him leave.

For the remainder of the day I just slept. It wasn't even a good, restful sleep either. It was the kind of sleep that happens when there is obviously something wrong in your body, and all it can do is just pass out until things re-equilibrate. I had crazy dreams while I slept, too. Dreams about having to pack up and move; dreams about trying to lift the piano. I think the worst dream was the result of having watched "The Recruit" before going to bed. Not at all a pleasant thing.

I think the most frustrating part was that I had planned to get things done around the house this afternoon. I wanted to clean the place up a bit and get a few more things unpacked before my mom comes over tomorrow. That's not going to happen. At least Brad took care of cleaning up the kitchen for me. That was cool.

I'm so ready to be off the antibiotics. I'm tired of having this nasty taste in my mouth from them. I'm tired of being tied to their schedule, and most of all, I'm ready to have this needle and its lovely dressing removed. I changed it all yesterday, but even so, it's at the point now where there's precious little I can do to make it comfortable.

Knowledge is power. --Sir Francis Bacon






I was never one to just sit back and accept someone else's explanation for something. I'm certain that my inquisitive nature is largely responsible for why I have chosen science as my profession.

I believe it is the job of the professionals in the CF clinic to provide me with the information I need in order to take good care of myself. I also believe that it is in my best interest to not just follow blindly without thinking things through. Afterall, the doctors' field of expertise is limited to what they have already learned. Ultimately, I am the one who knows my body best and knows what things work and don't work for me.

Some people with CF are more prone to lung problems, while others struggle with intestinal problems. Typically my greater challenges are in the area of food. I have always struggled to maintain an acceptable weight and BMI. Even now, I'm a bit underweight. Prednisone has jump-started my appetite, but I know that the weight I've gained is not the right kind of weight.

Several years back there was a cookbook for CFers called "Fat and Loving It". The cookbook had some decent suggestions for gaining weight and plenty of tips for packing in the calories, but I never liked it much. As an adult with CF, I know that being healthy is not just about acheiving and maintaining a certain weight. It's about providing my body with quantities and types of foods it needs to function as well as possible. I'm fortunate that I have a voracious appetite and don't often have to resort to dietary supplements just to meet my caloric needs.

I know not everyone likes to gather as much background information as I do, but if you're the type of person who wants to know WHY certain foods are good/bad for your body, I highly recommend you get a copy of "Foods that Harm, Foods that Heal" which is put out by Reader's Digest. Hardback and paperback versions are available. It's a great reference tool and it goes far beyond just listing foods alphabetically. The extensive index lists a wide variety of nutrition-related topics, including anecdotal case studies for certain illnesses that could be aided by diet.

We all have different needs when it comes to our nutritional status, but the one thing we have in common is that our bodies need the proper fuel in order to function. We can't always guarantee that we won't succumb to certain lung infections or other illnesses, but if we keep our bodies well-tuned with diet and exercise, those infections are easier to fight. This isn't to say that proper diet alone is sufficient for keeping someone with CF healthy. Along with good nutrition, we need to follow the doctor's orders, take our meds, do our treatments, and get whatever help we need to maintain a healthy mental outlook. Living well with CF doesn't happen by accident. It takes work, but it's worth it.