Breathing Deeply: My Life With Cystic Fibrosis

The plan is for me to start IVs on Thursday. I'll get to do them from home, so that's good. The doc said that would be his anniversary gift to us. I thought that was nice of him to say.

In order to determine which meds I'll need, I had to go to the lab today and give a sputum sample. I always have to hold back a laugh when the technician says "let me know if you're successful." Honey, you have no idea how successful I can be in the sputum production department. I'm semi-pro. If coughing up lung oysters were an Olympic sport, I'd be a gold medal contender.

Parking at my hospital is not free unless you have a handicapped placard. The procedure is to present your placard with your parking pass at the kiosk on the way out. The attendant writes down your placard number, raises the gate and away you go. Today when I handed the attendant my nifty blue placard, I got more conversation than I ever wanted to have with a parking lot attendant. I was a captive audience too, because he wouldn't raise the gate!

Here's how the conversation went:

"You're too young to have a handicapped placard."

"No I'm not. I have cystic fibrosis."

"Oh, that's tough. Have you ever heard of XYZ Wellness Center?"

"Yes I have," I lied. "That stuff doesn't work for genetic diseases," I stated with what I hoped was enough firmness to get him to shut up.

"Genetic? No, what your problem is is suppressed immunity. It's from all the bad stuff we eat. I know a woman about your age with MS who went there and got cured."

"There's no cure for CF. It's genetic." I insisted. "There are cars behind me, may I please go?"

He continued his little speech, undaunted. "Well, this gal, she got cured. But then when she left the Wellness Center and got back on all the same junk food and processed food as before, it came back."

"Uh huh. Well, that's too bad. Sir, there are 3 cars behind me." I edged closer to the gate, intending to ram it if provoked.

His final words were "check them out on Sunday. You'll love it."

I peeled out of the parking lot. I'm not kidding. I actually laid rubber with the Prius. If I were a less civilized person, I probably would have yelled an obscenity or given a hand gesture as I drove away. Honestly, why do people think they can give advice like that. Especially in the parking lot of a hospital for crying out loud?!

Maybe that's the reason it costs $1 to park. You get all the discount medical info you need from the brilliant parking attendant as you exit the lot. Who needs lengthy appointments with medical professionals and disease specialists when you can get a drive-through diagnosis.

*disclaimer*

SECOND LIFE is an adult venue. You must be 18 or older to get an account. It's mature content, but exposure to negative elements of nudity, etc. is MINIMAL practically to the point of NON-EXISTENT at CF University.

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My first introduction to Second Life was via a quick skimming of an article in the San Diego Reader. At the time I dismissed it thinking "oh brother; not another one of those places for computer geeks who can't get a life of their own and need to be on the Internet all day." I promptly filed the whole thing in a place in my brain reserved for things like MMORPGs, LAN parties, D&D (Dungeons and Dragons), City of Heroes and The SiMS. Basically I turned up my nose, turned on my heel and walked away from the matter.

A few days ago I finally broke down and decided to see what all the Second Life (SL) hooplah was about. I began by watching the brief video "The BEF Unveils CF University." The clip shows Boomer or rather, his avatar, talking about what you can expect to find over at Boomer Island and the CF University. It gives an aerial tour of the site and a peek into some of the buildings at CFU.

Second Life (SL) and CFU pick up where online chatting leaves off. You begin by creating your SL name to login. From there you use a tool panel to design your avatar. An avatar is a 3-D character that you design to look as much like or unlike yourself as you please. It may sound complicated, but it's really not that bad.

Most of what you have to do to move around in SL involves using your arrow keys and the occasional right-click of the mouse. If you're computer savvy enough to put backgrounds on your blog or upload photos (even with help!) learning to navigate your way through the world of Second Life is easily within reach.

Walking around is just the beginning. In SL you can even fly to your favorite places. And by places I don't mean websites. I mean things for your avatar to touch, sit on, walk through, play with, and people with whom to converse. That, for me at least, has been my favorite part of SL. Instead of just watching names on a Buddy list pop up and reading lines of text as they fly from your fingertips, you'll be seeing someone else's avatar as they type, which makes you feel like you're having a more interactive conversation. The closeness (if one can feel truly close to another person's avatar online) of the experience is somewhere between an actual sit -down conversation and a phone call. While you may not be actually out in the real world sharing a cup of coffee and breathing in the fresh air, at least you're not just glued to a computer screen waiting for that little chime to tell you that your buddy has typed text. Better still, there's no aggravating "3 foot rule" to maintain because of cross infection. As strange as it seems, just the image on the screen of my avatar standing virtual-toe-to-virtual-toe with someone and not having a mask or gown between us is something of a thrill.

Next time you're online here at cysticfibrosis.com and are wondering if there's something just a bit more engaging than the chat or the forums, consider signing up for Second Life. If you'd like someone to walk you through it initially and give you a tour of CF University, I'd be more than happy to help you out! Send me a PM and let me know when you're planning on being online. Right now it's pretty quiet on Boomer Island, but I'm hoping we can change that.

See YOU in Second Life,

LightNLife (Lolkje Osterham is my SL name)

I haven't posted for awhile because, frankly, I haven't had much motivation. It's hard for me to tap into my usual source of creativity. Writing just doesn't come easily these days like it used to.

On the health front I could be better. I talked to the doctor today and asked when they needed to see me again. I asked if there were any spots in next week's clinic and they said they were overbooked and were having to cancel people. Yikes! Good thing my health is at least stable (though certainly not stellar) so it's not an immediate concern to get in to see the doctor.

Over the last couple weeks my chest has felt quite "full." It felt almost like I have pneumonia again. Fortunately, by doubling up on pulmozyme and taking guafaneisin (expectorant) I've been able to clear a lot of gunk out. The biggest problem I'm having is my appetite. Usually I can eat like a horse. These days I'm eating more like Gimli. I asked the doctor to call in a prescription of Megase, which is an appetite stimulant. I hope that works.

As is usually the case following a hospital stay, I'm stuck at home doing IV meds with way too much free time to sit around and think. It's difficult to keep my thoughts on positive things sometimes. I find myself turning to God's Word at random moments in my day just to find something reassuring that I can hold onto. I'm glad that I was raised in a home and church where familiarity with the Bible was a big part of life.

I've learned so many verses over the years; so many words of comfort and encouragement. Hebrews 12 has always been my personal "go-to" chapter. "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders, and the sin that so easily entangles, and run with perseverance the race marked out for us."

I'm reminded that although I'm very much isolated from the real life CF community because of cepacia, I'm not alone. There are many people with whom I can connect online and over the phone who know what it's like to be propped up with pillows and trying hard to breathe evenly. What's more, there are people in my life who may not have CF, but they share my same faith. When I'm in need of some encouragement, I can get in touch with practically anyone in my spiritual support system.

I'm surrounded by greatness on all sides. Take my husband for example. He willingly sacrifices sleep in order to administer my IVs early in the morning. I'm amazed by how quickly he has adapted to the CF lifestyle, and the continual grace with which he handles it all. Other examples of greatness in my "great cloud of witnesses" are my friends--the friends I've known the longest. These are the people with whom I don't even have to utter a word, yet they'll keenly pick up on my mood. They have the incredible ability to read between the lines of my emails and send a reply that is just what I need at that particular moment.

There's nothing on this side of eternity that can make me understand the reasons why God allows CF to reside in this, my earthen vessel. Nonetheless, He gives me a measure of His peace, and that transcends understanding.