Friday, February 24, 2006

What a Day

Some days you're the pigeon; some days you're the statue.


I was only halfway through my 2nd toaster strudel this morning when my upstairs neighbor knocked on my door. He informed me that ours was one of a couple cars that were vandalized during the night. The passenger window was smashed to pieces. The glove compartment and center console were ransacked. I can't think of anything that may have been lying out in the open to attract the baddies. The only thing that may have been appealing was the little prescription bottle I had resting in the cupholder. (I try to keep enzymes handy for any snacking I do in the car)

The bad guy must have been disappointed with my collection of CDs, because I mostly had stuff by Christian artists. I hope my "ocean music and whale songs" relaxation CDs bring that person some peace into what would otherwise be a pretty stressful life of crime. It's actually sort of amusing that what's missing are some random CDs, a jacket, a camera and some Creon. I'd be mildly curious to learn what sort of "recreational" uses they thought they could get from the Creon. (Have fun trying to snort a line of crushed enzymes, Cheech!)

I'm upset about the inconvenience of it all. It has also made us think more seriously about moving into a place of our own that has a garage. But all in all I know that no matter what, God is providing for all my needs at any given moment. Stuff is just stuff. Even if I were to lose everything material in this world--even to the point of my own life--I would still not be shaken.

That doesn't mean I'm going to sit back and let things just happen as they may. Brad and I have stepped things up in the security department. I am still a little rattled from the experience and having some issues with hyper-vigilence, but nothing that's going to send me completely off kilter. Afterall, rain falls on the just and the unjust. Today just happened to be my day to be the statue.
Current mood: snarky
Current snack: Vienna Creme cookies
Health-O-Meter: 75% of baseline (grrrrrrr)
Emotional Weather: distant thunder

Thursday, February 23, 2006

Our Road Trip to Central Valley

Using a camera appeases the anxiety which the work-driven feel when they are on vacation and supposed to be having fun. They have something to do that is like a friendly imitation of work: they can take pictures.

--Susan Sontag

For the first time in several years, the weather and my health were conducive to a road trip up to Central Valley to visit my extended family. On the way up we also visited my best friend from childhood and her husband; on the way back we stopped in to share a cup of coffee with my parents' friends who used to own a dairy down the street from us.

The trip was an excellent opportunity to try out our digital camera. There's something really gratifying about being able to take so many pictures and not have to wait to see how they turn out. This is especially great for someone like me, who has a tendency to decapitate my subjects thanks to faulty use of the camera's viewfinder. With our new camera, I don't waste all that film!

Our trip was very action packed, but in a good way. We don't get to see that side of the family much at all, so it was fun to see everyone individually throughout the weekend. We went out to dinner one night with some couples whom I knew from my summer camp days with my cousin; on Sunday we saw lots of people who used to live in Southern CA and had gone to the same church as my family. It was a blast from the past!

The weather was colder than I had expected, but we survived. We hit some bad traffic and heavy rain on the trip up, and just a sprinkling of snow on the return trip. I think Brad enjoyed being the one to drive the Prius for a change! I enjoyed being able to nap in the car a bit. We didn't even fight over the radio.

As much as we enjoyed seeing family and friends, I think next time we do a roadtrip we'll do something that's just the two of us (and doesn't involve cows!)

Wednesday, February 15, 2006


It was cold out there, bitter, biting, cutting,
piercing, hyperborean, marmoreal cold, and there were all these Minnesotans running around outdoors, happy as lambs in the spring.
--Charles Kuralt

I'm a wimp when it comes to cold. Anything less than 70 degrees Farenheit, and I start dressing in layers and top it all off with a heavy coat. I know, I know--I'm a stereotypical southern Californian. But just in case you're wondering, no I don't live at the beach or drive a convertible.

I know I shouldn't complain when there are people in New York who are enduring a particularly nasty cold snap and one of the largest snowfalls on record (2 ft) for this time of year, but like I already said, I'm a wimp.

Yesterday I was up at Camp Pendleton doing some work. It wasn't field work this time, so I dressed as I usually do for working indoors--slacks, short sleeve blouse, and a light 3/4 sleeve sweater. In all honesty I expected to ditch the sweater by midmorning thinking I would be nice and warm. Boy was I wrong! The building I was in was extremely cold. I was shivering practically all day. At one point I went outside to stand in a patch of sunshine, thinking that might warm me up a bit, but there was such a cold breeze blowing, that it only made things seem colder. I am convinced that my body burned up much of its reserve energy just trying to get warm. By the time I got home I was completely exhausted.

After dinner I put on my warmest flannel pajamas (the ones Brad picked out for me as a gift our 1st Christmas), covered my feet with nice thick Winnie the Pooh slipper socks, and crawled into bed. Brad covered me up with 2 extra blankets, and I slept like a rock until morning. I hardly moved at all. It felt so good to be warm.

The whole experience reminded me that it is very important that I keep working hard to put on additional weight. When I'm underweight (like right now), not only am I not able to keep warm, but I have less energy in reserve. I was disappointed that my workday took all the energy out of my that I would have much rather spent enjoying celebrating Valentine's Day with my husband.

Oh well. At least I made him a nice dinner :)

Wednesday, February 08, 2006

Almost Enough to Make Me Superstitious

The root of all superstition is that men observe when a thing hits,
but not when it misses.

--Francis Bacon

Ever since I learned how to access and flush my port-a-cath by myself, I have been diligent in flushing it on a monthly basis. To keep things simple, I would typically do this on the 1st day of the month.

This month seemed to start without me. Not only did I forget to change my calendar to February until last Sunday afternoon, I failed to flush my port according to plan. I realized this breach in protocol in the middle of the night a couple nights ago. "Better late than never," I told myself, and began to to gather the necessary supplies. 1-inch Huber needle; dressing change kit; saline syringe; heparin syringe; all was set. I prepped the needle and it worked just fine. When the reddish orange betadine had dried to a sickly yellow, I proceeded to insert the needle.

It felt like it went in fine. I purposefully had aimed for an area that had as little scar tissue as possible. When I attempted to flush the line with the saline, the plunger was met with lots of resistance. I tried rotating the needle slightly. I tried raising my arm over my head (for some reason this helps sometimes). Still no luck. No blood return in the line either. Just a sinking feeling in my gut that this was going to take a bit longer than expected. Nearly half a dozen times I tried backing the needle out just enough to try to reinsert. All the while I was blaming myself for having waited to flush it. I was convinced that I'd let the line become blocked due to my negligence.

I didn't want to waste any needles if I didn't have to. Nothing was working, so I pulled out the needle and tried another one. The new needle went in fine, flushed smoothly and I got good blood return when I drew back on the plunger.

When all was said and done I examined the first needle. I tried flushing it and had just as much resistance as I had felt when it was inside me. Out of curiosity, I connected a new saline syringe to it and pushed down on the plunger as hard and fast as I dared. A very small piece of something peeked out of the needle as the saline sprayed from around it as though I was holding my thumb over the nozzle of a garden hose. Apparently, I hadn't aimed for a spot that was free enough of scar tissue, and as I pierced my skin, a tiny chunk managed to become wedged into the needle, preventing it from being used.

I was relieved to find out that waiting a few days to flush my port didn't cause any harm. I've had my port for about 9 years, and I'm told that it's amazing to have one last that long. The whole episode from the other night got me wondering though whether it may be time to replace/relocate it so that the buildup of scar tissue doesn't cause problems. Of course, replacement would involve surgery, and anesthesia isn't always the greatest thing for people with CF, so I'd like to avoid it if at all possible. For now, I'll keep flushing my port and treating it well, and maybe I can get several more years out of it.

Monday, February 06, 2006

My Take on a Classic

I have measured out my life
with coffee spoons.

-T.S. Eliot

A young woman went to visit her mother one morning during 10:00a.m. coffee time. Between sips of coffee laced with cream and sugar, and nibbles of Windmill cookies, the young woman began to unload her current frustrations. (Usually she'd babble away at the beauty shop or with her girlfriends, but this time the situation called for more extreme measures.)

Her mother sat patiently, listening to her daughter describe the frustration of wanting to have more energy to be a good wife to her husband, to be able to make more friends easily at church, and most of all, how to resist the urge to throw a pity party when it felt like God wasn't very close. Through salty tears of frustration, the daughter confided that she was exhausted--emotionally, physically, mentally, and spiritually, and didn't know how to cope any longer with the struggles that never seemed to ease up.

The mother set her coffee cup down on the table with a "clink", and confidently strode across the room to the kitchen. Before the daughter could ask what was going on, her mother beckoned that she join her in the kitchen. The mother quickly and efficiently pulled three different pots from their cupboards beneath the counter. She then reached into the refrigerator for a single raw egg and a handful of crisp carrots. Last but not least, she retrieved the coffee beans from where they rested on the counter, having just been finely ground by "The Magic Bullet."

The mother instructed her daughter to fill each pot with water and set them on the stove. The daughter complied, despite being utterly bewildered as to how this was going to solve her problem. She watched as her mother wordlessly gathered the three ingredients and placed them each into a pot of water.

In the first, she placed carrots.
In the second she placed egg.
And the last she placed ground coffee beans.

The mother set the kitchen timer for 20 minutes and returned to the kitchen table where she finished her cup of coffee. When the timer let out its urgent alarm, she returned to the stove and turned off the burners one by one.

She fished the carrots out and placed them in a bowl. She pulled the egg out and placed it in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she said, "Tell me what you're seeing."

"Carrots, eggs, and coffee," she replied, "but I know that's not the right answer."

She brought her closer and asked her to feel the carrots. She did, and noted that they felt soft, overly tender to the point of being mushy. (As a newlywed, she was quite familiar with that type of carrot.)

The mother then asked her to take the egg and break it. After pulling off the shell, she observed the hard-boiled egg inside, but the yolk had become so overcooked that it crumbled at even the slightest touch. (Again, nothing new to the novice chef.)

Finally, the mother urger her daughter her to sip the coffee. The daughter smiled as she tasted its rich aroma.

"It's not exactly a toffee nut latte, but it's certainly more appetizing and pleasant than the carrots or the egg. But what exactly is the point?

Her mother explained that each of these objects had faced the same adversity - boiling water - but each reacted differently.

The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.

The egg had been fragile. Its thin outer shell had protected its liquid center. But, after sitting through the boiling water, its insides had become hardened.

The ground coffee beans were unique, however. After they were in the boiling water...they had changed the water.

"Which are you?" she asked her daughter. "And how do you think God would have us respond to life's difficulties? Are you a carrot , an egg, or a coffee bean?"


Think of this: Which am I?

Am I the carrot that seems strong, but with pain and adversity, do I wilt
and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat?

Did I have a fluid spirit, but when the winds of change kick up a storm, haveI become hardened and stiff? Does my outer shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water - the very circumstances that bring the pain. When the water gets hot, it releases the fragrance and flavor of the bean. If you are like the bean, when things are at their worst, you get better and change the situation around you instead of letting it change you.

adapted from a story by Mary Sullivan

Sunday, February 05, 2006

Dealing With It...I guess

As there is no worse lie than a truth misunderstood by those who hear it, so reasonable arguments, challenges to magnanimity, and appeals to sympathy or justice, are folly when we are dealing with human crocodiles and boa-constrictors.
--William James

Unless you've been there yourself, you can't possibly know how it feels to be living in a world that has its own set of rules, its own frustrations, and its own battles. Unless you have actually sat down to a meal only to cram 6-8 separate capsules of medication down your throat, you don't know the first thing about mundane. When gaining weight and needing an inhaler less frequently are the highlights of your month; when being given the incredible freedom of getting to wait 4 months in between doctor visits instead of the usual month and a half--then you will possibly begin to understand a fraction of the life that is CF.

One of the most difficult parts of being an adult with CF is explaining it to people. More than that, it's the deciding whether or not to share that information with certain people. Personally, I would prefer to be thought of as a normal, capable, functioning human being. I worry that those who don't know I have CF will think that I'm flaky, lazy or incompetent. Even worse, I'm afraid that people who do know of my struggle with CF will walk on eggshells around me, afraid of demanding much effort in the off chance that it would aggravate or worsen my condition.

Sometimes I feel as though the world is watching me walk around with a big sandwich board that displays CYSTIC FIBROSIS in big, bold letters. Sometimes that's good--like in the case of this blog. Wearing such an identifying marker is making it much easier for me to find people out there who deal with the same frustrations I do. I don't think my sandwich board causes as much of a problem for me in the online community as it does in the real world with the 3-dimensional people I interact with on a weekly (perhaps weakly) basis.

I don't know know the particular details of how others out there in the adult CF community cope with their disease. I'm sure that we all go through periods of emotional highs and lows that are unfairly coupled with the highs and lows of our health episodes.

I can't say enough how thankful I am for my husband, Brad, and the willingess he has to weather these storms with me. He has had to learn in a very short period of time all the things about me that my parents got to absorb on a slow and steady basis. I have to say, it's a darn good thing Brad's a fast learner!

But even the fastest of learners and the most sympathetic, well meaning hearts cannot truly understand CF and the mind games it plays on me. Even with the measure of faith I have in a sovereign, just, personal, loving God are a poor match for my weakest moments. Not to be sacreligious or blasphemous, but sometimes faith in the unseen, unfelt God doesn't exactly reassure me or make me feel as cared for as an email or phonecall from a friend would. Even in a crowded room of people who say they are committed to praying for me, it is possible to feel quite lonely and misunderstood.

It's during those times that I'm painfully aware of my sandwich board, but have no hope of hiding it.

Current mood: dismal
Current snack: glass of milk
Emotional weather: storm clouds and rain
Health-O-Meter: 70% baseline

p.s. to my CF pals reading this blog, sorry to be so down, but you know how it goes.

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