Breathing Deeply: My Life With Cystic Fibrosis

My dad likes to ask me, "are you a happy girl?" It's his way of checking in and communicating with me a little deeper. I know he's not asking specifically about my happiness--although I know he cares about that--what he's really asking is "how are things going for you right now?"

I've answered that question in just about every way imaginable over the years. If my dad were to ask me today "are you a happy girl" I would have to say "absolutely."

Not only am I happy, but I'm at peace. I am coping with CF in a way that I couldn't before.

I have a purpose in life: to love God and tell people about Him and share encouragement with them in ways that I have been uniquely suited.

I have laughter--today when my mom broke a whole box of Christmas lights all in one fell swoop, we laughed like crazy because every single bulb had broken; we realized this when she shook the box and it sounded like Frosted Flakes were the contents.

I have joy. My husband never stops impressing me with the ways he loves me. He is my greatest earthly happiness.

I have anticipation. Very soon my little namesake, Ava Lauren will see the world for the first time. I get to celebrate the birth of her and her twin sister, Julia Ann, who are already blessings in their lives of their parents.

So yes, I'm a happy girl. Happier than I've been in a long time.

It’s been awhile again since I’ve blogged. A lot has been going on in my life, and praise God, it’s stuff that’s so much better than a year ago. I know there are a lot of people who read my blog to find out how I’m doing, so I plan on treating this particular entry as more of a comprehensive overview than I usually do. Sit back and enjoy! I know I am.

Church

Ever since we moved to our new home, we’ve been working on inserting ourselves into the congregation at New Life in a more meaningful way. This was difficult for awhile, since it was rare that I had energy for church or that I was healthy enough to go at all. Another part of our problem that kept it from feeling like we were a fully functioning family unit (regardless of the fact that we’re a 2 person family) was that we often woke up at different times and got ready at different speeds. This was further compounded by the fact that on some mornings Brad was participating in the worship team, so he’d leave for church early, giving me more time to roll out of bed and get ready.

Clearly, that wasn’t working for us.

Brad and I have recently implemented a great little plan that gets our butts out of bed and into the church pew. We set the alarm for 7:30am, regardless of whether we need to be there early for choir or worship team practice. We’ve found that it puts a much brighter light in our eyes and prepares our hearts for church much better when we do this. Occasionally we attend the evening service too.

Work

At the end of this week I will have completed my first month back in the office. I’m loving it. Granted, it’s still a challenge to expend all that mental energy all at once, but it’s really not wearing me out. I only work 3, 8-hour days a week, and that gives me just enough stimulation to keep me sane. It’s also almost exactly the amount of activity I can handle without feeling exhausted. I love the feeling of coming home at the end of the day with enough energy in my reserve to make us a nice meal, and then just unwind.

The projects I’m doing are all in-house stuff. No fieldwork for me anymore. I’ll miss the variety that it would add, but I won’t miss how tired it would make me. I’m also not going to miss the anxiety of traveling by plane with all my medications and the worry that I might pick up some nasty bug.

Writing

As some of my faithful readers may have noticed, I’m taking a break from writing Pools of Grace. With the other transitions going on in my life right now, I haven’t yet ramped up to the point of fitting that into my schedule. I’m quite busy on more pressing writing projects.

Dear Future Husband is in progress. We were going to have it published with Shulamite back in September, but that turned out to be a less professional route than we wanted to go. The initial draft was completed quite some time ago, and now I’m working hard on a rewrite. I’ve received some excellent feedback from my friends and colleagues in the professional writing biz. I’ve been encouraged to draw up an official proposal for the book, complete with sample chapters and market analysis, and submit it to publishers at the Mount Hermon Christian Writer’s Conference in the Spring. I’m praying daily that God will use my words to touch people’s lives, and that my testimony will inspire them to give God full control of whatever is going on in their hearts.

In addition to Dear Future Husband I’m doing a few other projects. One is with Judith Ann Hillard, author of The Other Woman at the Well. Please pray that her newly-formed non-profit organization, Addiction Overcome, Inc. will receive the publicity and funding it needs to make a difference in the lives of those who are impacted by addiction. Anyone desiring more information about Addiction Overcome, Inc. or Judith’s book, should stop by her blog. She’s currently in the throes of her holiday outreach called Operation Band-Aid, and could use any financial support you can give.

Gimli

An update from me would hardly be complete without a mention of my dear sweet bunny, Gimli. Gimli has adjusted well to my being out of the house during the day. He’s always quite happy to see me when I come home. He stands up as tall as he can on those furry little feet of his, and presses his nose through the openings in the cage. I kid you not, his tail even wags sometimes. He knows that once I’m home he’ll get to either a) run around for awhile b) come downstairs for some parsley, or, c) get a sweet snack.

He’s quite an intelligent little critter. I don’t even have to say “bedtime” anymore for him to go into his cage at night. If I just stand there and open the door, he runs right in. Gimli has recently overcome his fear of the stairway, and likes to hop down and sniff along the length of each individual step.

Health

I’m doing great. Brad was quite sick last week—congestion, fatigue, snots, cough—and praise God, I didn’t get whatever bug he had. Granted, I slept on the couch for about 5 nights so as not to expose myself to his cooties, but it’s amazing that I didn’t get sick. I have a slight cough right now, but that’s pretty typical with this Santa Ana weather.

I finally got my eFlow at the beginning of the month, and I LOVE IT! I can’t believe how easy it is to use and how quickly the treatments go. The finer particles of tobramycin do make me cough a lot while I neb, but that’s okay. Now all I need is a PARI proneb Ultra for my other nebs, and I’ll be good to go.

Yes, I still lift weights. I mostly do curls and bench presses lately. I haven’t been as good about stretching out my leg muscles, so I need to get back to that. I’ve noticed it’s harder for me to touch my toes again lately. But then again, maybe that’s because I have this wonderful extra padding on me! I’m staying up above 120 lbs., doing my vest at night while I type, and I’m eating like a horse. In fact, I feel so darn good lately that I cancelled the CF clinic appointment that I was supposed to have tonight. Frankly, I’d like to be able to coast through the holidays without having to think so much about CF and doctors. Come January I’ll check in again so I can do all my annual labs.

Well, that’s it from me! Thanks for sticking with it for this LONG LONG post.

This afternoon I stopped at the pet store to pick up some food for my critters. I decided it was time to add some new fish to my aquarium. I purchased three blood fin tetras. The helpful salesclerk put them in the plastic baggie, squirted in some air and tied the top tightly with one of those itty bitty rubber bands that never seem to let go once they're on.

I proceeded to the counter to pay for my new fish. From there I drove to Target to get a b-day present for my sister. I didn't plan on being in there very long, but I didn't want to just leave the fish in the car. That seemed cruel. So I put the whole thing into my purse, which is one of those big tote-bag style numbers. What could it hurt, right?

As I was walking down the aisle of CDs looking for an Aerosmith album, I noticed that my hip felt moist. I was wearing a bulky sweater and a jacket, so I just assumed I was getting sweaty. Coming around the corner was a customer in one of those go-kart things, so I pulled my big purse closer to my body to allow her to pass. That's when I saw it--a small but steady trickle of water coming from the corner of my purse.

My initial thought was to abandon my shopping, run to the car and get home quickly before I had 3 tiny casualties on my hands (or, in my purse, rather.) That wouldn't solve the problem of the leaking bag, and I'd only end up making my car seat wet in the process. My next thought was to get a bucket or travel mug to put them in, but that seemed gross. The cup didn't seem like a bad idea, however.

I hot-footed it to the little concession area in the store and asked the clerk for just an empty cup with a lid. When she gave me a quizzical look I almost said "my water broke" which I'm sure would have made her look at me even more strangely. I held up the ever-shriveling bag that contained the fish and said "Please, I need a big cup! My fish are leaking!" She handed it over and pointed toward the counter where the lids, straws and napkins were kept.

Placing the cup on a table, I quickly but carefully struggled to pull that little rubber band off the baggie. Stupid rubber band! Finally, it came loose and I poured my 3 frightened fishies into the cup. As I fastened the lid securely in place, I noticed a woman watching me with quite an odd expression. She was probably wondering if she had in fact just witnessed a young woman pouring 3 fish into a soda cup. Her mouth was agape, so I decided to give her a good show. I grabbed a straw, unwrapped it, slid it into the cup and pretended to take a sip.

"Beats Starbucks any day," I commented as I walked past her.

She's probably still sitting there, eyes and mouth wider than a codfish.

As I was reminded in the sermon on Sunday, prayer is something to which we are called on an ongoing basis. I'm posting this blog entry asking you not for donations, but for prayer.

I am involved in ministry called Addiction Overcome. My friend, Judith Ann Hillard, recently started this as a 501(c)3 non-profit entity. Her mission is to help families and individuals who are touched by addiction in some way. Her mission statement is summed up in the following:

That the creation itself will be liberated from its bondage to decay and brought into the glorious FREEDOM of the children of God. (Romans 8:21, NIV)

Judith's testimony is amazing. She has written her story in her book The Other Woman at the Well: A Truthful Account of Addiction Overcome. You can read more about her on her website http://addictionovercome.com and her blog http://addictionovercome.blogspot.com.

Addiction Overcome is launching its first holiday outreach program called "Operation Bandaid." We're calling it that because we know this is just a temporary but necessary solution to the overall disease of addiction.

Please be praying that God will magnify and multiply our efforts as we seek to provide holiday meals, gifts, and necessities to families in need. Pray also that as we share God's Word with these families and tell them of the freedom to be found in Christ, that they will truly be able to overcome their addictions. Right now our biggest hurdle is funding, but we know that God will move that mountain if only we ask. He has proven himself faithful in so many ways. We look forward to seeing what he has in store for his children as a result of this ministry.

Thank you for your prayers. Please be sure to check out the website and blog. I'd be more than happy to answer any questions you may have about Judith or Addiction Overcome.

After nearly a YEAR on disability leave from my job, this week I FINALLY get to go back! I'll be going back part-time, which is really the best option for me. I'm so thankful that my position has been kept open for me all this time. My supervisor sounds eager to have me back, and I should be able to hit the ground running once I get there.

Although I'll be working 24 hours a week doing environmental science stuff, the rest of the time I'll be keeping up with my freelance writing. I just got back from a Writers' Conference and Mentoring Clinic, and I'm so excited about where things are going. Despite the set-back with my book (broke ties with old publisher, getting ready to submit a proposal to another one in the Spring) I'm still on track with where I want to be.

Thank you so much everyone, for your encouragement and support over this last year. It has been quite a ride. I'm thankful for every day and the blessings it holds. It's hard to believe how sick I was a year ago. My weight is up, my stamina is great, and all in all, life is good.