Breathing Deeply: My Life With Cystic Fibrosis

Back in December my company changed its office location. The parking at the new place is far superior, but the proximity of my desk to the restroom is not. I've learned that if I even *think* I may have to use the facilities, I should go ahead and start the journey through the aqua and ecru catacombs that comprise our complicated hallway system. Oddly enough, we have 2 separate kitchen areas on the second floor of the building, but only one set of restrooms.

During my lunch break today I stayed at the office instead of going home, which meant I needed to use the restroom at the same time everyone else did. I wound my way over there and turned the final corner and...PHEWWWWWW!

I don't know who the brilliant genius was who decided that the opening for the kitchen should face the restrooms, but my goodness, what a frightful thing. Someone had apparently burned a bag of microwave popcorn, someone else was nuking what seemed to be a broccoli and toe cheese casserole and I don't even want to speculate about what was going on in the restroom.

On Monday I'll eat at home again. I'm pretty sure it's going to take at least that long for me to get my appetite back.

Last night two of my colleagues and I ventured over to UCSD to attend a symposium highlighting the achievements of last year's Kyoto Prize Laureates. We had the opportunity to sit in on a lecture presentation being given by Dr. Simon A. Levin, winner of the award in the field of basic sciences. Dr. Levin has been monumentally instrumental in the development of what is known as "spatial ecology". In other words, he uses mathematical approaches (calculations, formulae, etc.) to extrapolate quantitative data about qualitative patterns in an ecological setting. Additionally, he has observed that there is a profound similarity between economic patterns and ecological ones. I won't bore you with all the details of it, because I doubt everyone is as interesting in being a life-long learner like I am.

But I digress...

I realized something about myself last night. I began to understand why it is that I enjoy learning so much. I agree with Adler's quote that I included at the start of this post. For me, learning is just about cramming a lot of book knowledge into my head. It isn't merely about exposing myself to a variety of different ideas and beliefs (although that's certainly a part of it.) Because learning is a way to grow, I am thankful for the opportunities I have been given to grow over the years.

I was always the type of student to request additional assignments from my teachers. Whenever possible, I strived to exceed the standard. Because cystic fibrosis limited me in my ability to attend class regularly, I made a conscious effort to keep up with my studies anyway as a way to demonstrate that who I am doesn't have to be defined in terms of my physical state of being. I devour books. When I find a topic that interests me, I try to learn as much as I can about it. In doing so, I am given a chance to grow not only in intellect, but in character.

I hope I never stop learning and growing. I am so thankful that of all the areas of my life that cystic fibrosis has impacted, my mental capacity has not been one that has been adversely affected. I will never win any academic awards, but I have the reward of knowing that I can continue to learn as long as I live.

My husband and I seem to have hit upon a routine that works well for both of us. Brad has been reading the book "Getting Things Done", and has been putting some much appreciated effort into maximizing his time management skills. Instead of working out in the morning and making himself feel rushed, he works out in the evening on his way home from work. This means we eat dinner a little later than we used to, but it's worth it.

I really enjoy the opportunities I have to love my husband in seemingly mundane ways. I know he appreciates a neat, clean home, so I do what I can to minimize clutter in the living room and kitchen. I'm finding that the more time I spend doing my job as a wife, the more I enjoy it. I almost think I was born in the wrong decade. I thoroughly enjoy planning and preparing meals, keeping house, ironing my husbands shirts, etc.

And no, doing all this "woman's work" type stuff does not make me feel oppressed. Quite the opposite actually. My husband holds me in such high regard and treats me like a princess, and that's what makes me want to do those household things for him. I like being a wife, but it's more than that. I like being my husband's wife--his helpmate, his companion and his friend.

Some days I just don't have the energy resources available to me to do all those things, and that's okay. My husband is just as capable and willing when it comes to keeping our household running smoothly. That's what makes our marriage such a wonderful partnership. He fills in the gaps for me, and I fill in the gaps for him. Our life together is a living, breathing example of what it means for "the two shall become one."

Saturday was, well...painful. I have no idea what was going on with my innards, but something was sorely (and do I mean SORE-ly) wrong. I can't think of anything I ate that was out of the ordinary. I took my usual amount of enzymes with my customary Saturday morning breakfast of Eggos and Instant Breakfast, but by 10:00 things were badly out of whack.

In the past I have had stomach issues associated with certain antibiotics or even steroids. About 2 years ago I underwent a series of abdominal exams, x-rays and various other sundry imaging tests to see why on earth I was bloating almost instantly upon eating even the smallest morsel of food. The gastoenterologist's conclusion was that I had something called "slow stomach". In other words, it takes me almost 3 times longer than normal to digest something. For someone who eats such large quantities as often as I do, this is unfortunate. Because of malabsorption, I won't feel full, and because of the slow stomach thing, I am full before I should be.

What I can't figure out is why I don't have the bloating problem all the time. In fact, it has been quite awhile since I've had a full-on "tummy ache" like I did when I was a kid (before we knew what foods I could eat).

Anywho, back to Saturday. After my usual breakfast, I was uncomfortably bloated. So much in fact that it took me an extraordinarily long time to find a shirt that would fit and not make me look like an expectant mother. Two hours later I was writhin uncomfortably in my seat, trying not to embarrass myself (i.e., break wind) in front of my favorite author. (More about him later.)

I had to excuse myself from the event early to go get groceries in anticipation of my in-laws coming over for dinner. Although I only need 4 items from the store, I used a cart just so I could have something to lean on. I was semi-hunched over, struggling against the pain as I pushed the cart up each aisle. I had broken out into a cold sweat and considered calling my husband to come pick me up because I was afraid I was going to pass out from the pain. Fortunatlely, I made it home (we're just a blocks from the store), but threw up in the bushes on the way into the house.


My gut was still wrenching. It was as though my digestive system couldn't decide which direction it needed to pass things. To be blunt--it passed things both ways. I vomitted for the better (or was it the worse) part of 2 hours. I had to cancel our dinner plans because I couldn't even stand. I took some ibuprofen hoping that the anti-inflamatory part of it would calm my gut. I also took some Simply Sleep to get my body to relax so I could rest.

Sunday I was still afraid to eat for awhile, which was unfortunate because we were invited to Easter Brunch to celebrate my grandma's birthday. I hate to pass up an all-you-can-eat event. We went, but my tummy was still quite crabby.

It's been 48 hours now and I'm still having issues of discomfort. Any of you CFers out there have similar experiences? I'd love to hear some possible remedies...at the very least, misery loves company.

A few years back I was part of a team that did some research to determine whether there was a connection between the frequency and severity of asthma attack and activity level. Part of my job was to assess the study subjects' personal environments (i.e. where they slept, played, lived, etc. ) I was shocked, dismayed and angered by the living conditions of some of the subjects we studied. All socioeconomic variables aside, I observed that one area in particular was dramatically responsible in determining the quality of life for those asthmatics. In a word: compliance.

I'm the first to admit that I am far from an image of perfection when it comes to compliance with my treatment regimen. This was especially true when I was younger. Now that I'm older, I see the extremely vital importance of taking my medications, doing my treatments, and obeying the doctors' orders. I'd like to spend some time pointing out the areas in which I'm sure many of us CFers struggle most, and why compliance is so important.

A commonly overlooked aspect of keeping our health under control involves CLEANING OUR NEBULIZER CUPS. The first place that bacteria likes to linger is in warm, moist places. After your treatment, thoroughly rinse and dry your setup. You don't need to try to cram a paper towel or piece of gauze into that tiny cup to dry it after rinsing. I've found that a hair-dryer on a very low setting, held approximately 8-12 inches from the cup will dry it quite well.

Along those same lines, don't forget to change your nebulizer's FILTER as needed. You're not doing yourself any favors to be sucking in air that has passed through a filthy filter. As an air quality scientist I can tell you that the particles in the air that do the most damage to our lungs are the tiniest ones.

Another big problem is that many of us give up on medications that we don't think are benefiting us. TAKE ALL MEDICATION on time, as prescribed. If a medication truly isn't helping you, then talk about it with your doctor. Don't make an arbitrary decision about it on your own. This is one of the things I struggle with the most. My scientific background helps me in a lot of way when it comes to dealing with CF, but on the other hand, there are times when I don't take a doctor's advice as seriously as I should.

The biggest problem that occurs when we don't comply with doctor's order with regard to medication is that we run the risk of creating a bigger problem that cannot be undone easily. This is especially true for those who have to take digestive enzymes. When we don't take them faithfully and frequently, we are robbing our bodies of the nutrients they need to function well. What may seem like an insignificant weightloss may really be malnourishment, which leads to a decreased ability to fight infection, which allows the infectious "bugs" to be stronger and as a result, it takes a much longer treatment period to wipe out the infection. Tell yourself that the 2 minutes it takes to assess your meal and figure out the appropriate number of enzymes to take with it is a good trade compared to 14-28 days of antibiotics to treat a nasty infection.

I know that despite our best efforts to ward off possible infection, sometimes our bodies have plans of their own. However, I'm a firm believer that an ounce of prevention is worth a pound of cure, especially when it comes to keeping my living environment free from potential health hazards. In all honesty, I think that the effort exerted in order to comply is well worth it, especially when it saves me the trouble of dealing with an infection.

Current snack: raspberry yogurt
Health-o-meter: 95% of baseline