Breathing Deeply: My Life With Cystic Fibrosis

The last couple days I've been sleeping on and off as the pain medication takes hold. I didn't know I could hurt this much and NOT have it be post-surgical pain. Every movement I make somehow manages to concentrate itself around my sore rib. It's so bad that I'm not doing my vest right now, which is a bummer because that's such a critical part of my health care. Fortunately I do have a hand-held percussion massager that I can use on my good side to keep things opened up. I try to keep my coughing at a minimum, but that's hard too. Good thing I have so many sets of pajamas! I think I'll be living in them for awhile while I heal.

On the positive side of my day, today I got a new iPhone. It's currently being held captive by my husband, but I'm looking forward to playing with it as soon as he gets home. It probably does things well above and beyond what I need it to do, but it was fun to splurge on a personal item. Mine is white and Brad's is black.

This weekend, Saturday actually, was quite a busy one. Every five years for my grandparents' anniversary, our whole family gets together to take a portrait. This year the designated "call time" was 8:00 am. Brad and I had driven up the night before and stayed at a Holiday Inn. It turned out my cousin and her family were staying there too. It was fun to see them for a few minutes before all the busyness of the photo session.



Since we all need to color-coordinate for the photo, preparing for this event generally involves a shopping trip or two to find the right clothes in the right colors and the right style. This year we were all pretty casual. The colors were blue and brown, which meant jeans and khakis for the most part. My mom took a few photos in addition to what the photographer took.

After the photo session we all ate brunch together at Grandpa and Grandma's house. It wasn't anything fancy. Mostly a lot of quiche-like foods and some muffins. Following brunch we had some down time. Brad and I went back to the hotel for a couple hours. He used the time to play with his computer (hooray for free wi-fi at hotels) and I took the opportunity to get in a nap. I knew I was going to be crabby if I didn't get a few more winks. I had a rough night of sleep the night before because my rib was really aching. I couldn't sleep on my right side, which is my usual side.

After my nap it was time to head over to Auntie's house for more festivities. This time it was a baby shower for Dana. I still can't really wrap my head around the fact that my little sis is pregnant. She makes it look easy. For a gift I made a crib blankie that had monkies on it and some green and brown coordinating fabrics for the border. It's one of the best blankies I've made so far and I was proud to give it to her.

Once the shower was over it was time to go back to the hotel to pick up Brad so we could drive home. On the way we stopped at Mandarin Garden for dinner. I wanted Brad to experience their food since I'd already had it and enjoyed it a few times. He agreed that it was every bit as good as Peking Palace, perhaps even more so. Unfortunately it's all the way up in Mira Mesa, so we can't really make it "our place." It's a good half hour drive from home. As an alternative, we've decided that Mandarin Garden will be our new place to stop when we're driving back through the area.

This morning I woke up in quite a bit more pain than yesterday (remember my aching rib?) I was absolutely convinced that it was broken so I hauled myself to Urgent Care to get it checked out. The good news is that it's not really broken, but I do have a large what's called a "bone bruise" on that spot. The bad news is, just as if it had been broken, I'm looking at a 4 to 6 week recovery time. The Urgent Care doc got in touch with my CF doc and they decided that what I needed was an incentive spirometer and a good strong dose of pain meds. I was already on pain meds for arthritis, but that wasn't helping my rib so they prescribed something stronger. Looks like I'll be taking it easy at the gym for the next month. Bummer. Just when things were getting good.

Last night I had my first CF Clinic visit since my hospitalization in April. I have been feeling so good lately that I wasn't too worried about it. Mostly I was curious about how my lung function test would turn out. I was so glad to see my FEV1 up over 1.8L. The last time my LFTs were done I only got 1.54L. For those of you who keep track of percentages and not volume, that means my lungs had been functioning at a mere 47% but has now jumped up to 56%. I'm really pleased with that number. I'm hoping that if I keep up with my gym routine I can bring that number even higher.

It was good news all around last night. The dietitian was happy with my weight since my BMI is now at 21, which means I'm normal for my height. Studies have shown that the closer a CFer's BMI is to 22, the better lung function they have. I'm happy with where I'm at. All of the folks from the clinic who came to check on me commented on how good I looked. I should say so! The last time they saw me I was on oxygen. I don't even need that at night anymore. I've come a long way in just two months. I'm hoping I can continue to do this well for quite awhile yet.

*Changing the subject*

Last night Brad and I discovered that my aquarium was leaking. Ugh. The carpet around the area was damp so I tried sopping it up with towels. Fortunately the majority of the water was absorbed by a blanket I had kept in the aquarium cabinet (which is open on the back). Even so, dealing with the moisture has not been fun. I spent some time last night on my hands and knees with a hair dryer trying to spot treat the carpet.

I found the source of the problem. Fortunately the structural integrity of the aquarium itself is fine. It's the filter unit that was causing the problem. It kept spilling up over the top of the filter. I ended up getting a new filtration system for the aquarium and ditching the old one. Still the problem of the damp carpet remained, so I headed over to Home Depot to invest in a small wet/dry shop vac.

Once I got the shop vac put together it was back to my hands and knees to work on the carpet. I sucked up as much moisture as possible by using the vacuum and following behind it with the hair dryer. That seemed to work great until I blew a fuse from having so much power being used at once. Luckily I was able to easily find the right breaker switch in the garage to get things up and running again.

A few weeks ago I returned to the gym for the first time in months. I was a little apprehensive about how well I'd be able to keep up, not to mention what sort of routine I'd be able to keep. When I started my FEV1 was holding steady at 1.6. Not bad, but not good either. My trainer devised a series of exercises that would open up my chest muscles and strengthen my back so that I could breathe better. Initially I set my spirometry goal at 1.8L. My trainer said that if I'm going to get there, I need to do cardio on the days that I don't work with him.

My cardio routine is to do 2 miles on the treadmill and 10 minutes on the elliptical. I love the walking but I loathe the elliptical. At first it was very tiring for me and I could barely hang in there for 3 minutes, let alone 10. The great thing about working out on a regular basis is that your body remembers the movements and adapts to them. This is why it's so important to push myself just a little harder each time I exercise. If I settle into too much of a routine, I won't make any progress.

Today I worked with my trainer and he said he could definitely see the improvement. He had also checked the gym's records and saw that I was faithful to come in on the "off" days just to do cardio. The stretches he had me do felt great. I'm finally getting to the point where I can feel the results. One of the exciting results is that my FEV1 is improving. This morning it was all the way up to 1.88L! I'm hoping that it will continue to improve the longer and harder I hit the gym. I've been told that the way to progress is to follow the acronym FIT. I must first increase the frequency of my workouts. Right now I'm at 4 days a week, which is my max so now it's time to move to the I--Intensity. When I walk on the treadmill I should start increasing the intensity by making it more uphill. When I have that locked in after several weeks, then I progress to the T. I should spend more time on the treadmill or elliptical. Perhaps go to 12 minutes and then 15 on the elliptical. Who knows. I'm just so happy to be at a point where my health is stable. I have a feeling all this exercise is only going to improve my stability.

Today was a good day. I began my morning with a trip to the gym to work with my personal trainer. He's aware of my unique needs because of having CF, and he's designed a workout that will really help increase my lung function. I'm already feeling a difference after being stretched out. I tend to hunch my shoulders because I'm a bit barrel-chested. The exercises I did today opened me up and really worked on loosening my tightened muscles. I've been keeping an eye on my FEV1 (I have a hand-held spirometer here at home) and it's exciting to see the numbers climb ever so slightly each day as I get back in shape.

After the gym I took a quick nap then got ready for my afternoon visitors. My good friends, Danielle and her husband Danny were in town for a Padres game and they had their little cutie, baby Bethany along with them. They got here around 3:00 and I got to hold Bethany for almost 2 hours straight while the three of us talked and got caught up. Bethany is a sweetheart! She cooed almost the entire time, stopping only to offer me adorable little toothless baby grins. She still has that "new baby smell" (and another baby smell came later on) and seemed perfectly content in my arms. I only wish my friends lived closer.

Tomorrow I'll get to spend time with another friend--a woman I met at the Mt. Hermon Writer's Conference. She has a very active ministry helping parents of terminally ill children. In particular she's writing a book about the grieving process. Her own life experiences play a large part in what she's doing, having lost a daughter to cancer several years ago. I'll be sure to have a link to her online stuff tomorrow.

Today I'm thankful for my return to better health, good friends, and the ways that God makes himself real to me on a daily basis. I hope I never take for granted these good gifts and this season of my life.