Breathing Deeply: My Life With Cystic Fibrosis

If you're one of the people who read my blog on a regular basis, you know that this past year has been a really rough one for me. Too many hospitalizations and complications with medical equipment made 2008 one of the relatively worst years on record for me. Frankly, I'm glad to leave that all behind me and push forward into 2009 with a sense of hope and optimism. My husband and I were talking about this very thing after breakfast this morning. We've seen how we cope under the unpleasant situations, and we're ready to just enjoy life for awhile.

Of course that's more easily said than done. I've been on disability from work for awhile now and I have to admit that there are days when I feel, well, bummed out about it. Brad reminded me this morning that there's more to life than just working. Yesterday, for example, was a nice glimpse of what it's like to have the pressure taken off.

Every other Tuesday is the day we have a cleaning service come. While they were here we got out of their way by going to a movie. I'm a huge James Bond fan so we finally went to see Quantum of Solace in the theater. The movie was good. Not great, but good. Plenty of action, but not much to slow the pace. After the movie we went to Ruby's for lunch. We hadn't been there in a long time. I ate WAY too much and got a bit of a stomach ache but it was worth it to be out on a "date" with my husband. We finished off the outing with some walking around the mall for awhile, then headed home.

I didn't sleep the best last night, but that's probably a lot to do with the prednisone. I hate that stuff. Hate with a capital H.

Today we're just lounging around the house enjoying the fact that we don't have anything we necessarily have to be doing. I might take a trip to the grocery store later, but right now I'm content to sit on the floor typing this blog entry and watching the bunnies run around.

See you in 2009!

I can't remember the last time I felt this well at Christmas. Usually I try to summon up all my energy and strength just to get through a party or two. This year was different. Not only was my Christmas enjoyable, but I also felt well for all of the events I attended. It's hard to believe that just a few weeks ago I was sitting at Thanksgiving dinner sucking oxygen through a nasal canula.

Today has been a very nice, restful day. Brad and I got the whole house straightened up. We had made quite a mess of wrapping paper and gift boxes. It was fun to open so many gifts. Brad never ceases to amaze me with the thoughtfulness he puts into selecting things for me to enjoy. In my opinion he is the world's sweetest, most caring husband. All I ever have to do is ask for something and he'll make it happen. He's pretty cute when he's interacting with the bunnies too :)

Speaking of the bunnies, we're making more progress with them being interactive with me. They still largely prefer each other's company to my own, but the do come over to investigate whenever I call them. I'm learning a lot about their personalities too. Coral usually hangs back and observes Sandy before becoming involved on her own. Last night I had Sandy sit on the couch with me while I watched a movie. Right now I'm just letting them run around in the loft. They seem to be enjoying themselves.

Christmas day might be over but the partying is not yet ended. Tomorrow Brad and I are going to spend some time with his high school "Band geek" friends for awhile. Then on Sunday my parents, her sister and her boyfriend are coming over after church for dinner. I'm really looking forward to that. Generally I like anything where I get to play the part of the hostess. I've got the menu all planned out already and can't wait to prepare it. Mmmmm.

Well, off I go to do some knitting. I hope everyone had as wonderful a Christmas as I did.

There's a nip in the air and it's a bit overcast, and that's exactly what makes today such a perfect early Winter day. I think part of what makes today so perfect is that the last couple days and nights have been good on a lot of levels. Last night I had my follow-up appointment with the CF clinic and it went really well. My PFTs were stable (1.8L FEV1) and my weight...ha! My weight was a whopping 129 pounds. We celebrated with a trip to Denny's for some pancakes. Did you know you can get 4 pancakes with the Grand Slam now? Yahoo!

Since we weren't able to drive up to Grandma and Grandpa's on Sunday for their Christmas party, they brought a mini-party to us! They drove all the way down to take us out to lunch. We ate at BJ's Pizza and Grill. I had only been there one other time. I think we're going to have to start making a habit of going there for dessert after my CF appointments. They donate $1 to the Cystic Fibrosis Foundation for every Pizzookie (pizza-cookie) dessert they sell. Pretty cool eh?

After lunch I came home and took one of the world's best naps in our bed. Sometimes I prefer the couch for a nap, but today it was the bed. We recently purchased new sheets with a nice high thread count. I can't believe how luxurious they feel. It's like having an extra mattress pad on the bed they're so thick and cozy. I feel like a princess just sitting on them. Ahhh...

Things are progressing nicely with the bunnies. We've had them for about 6 weeks now. They are so closely bonded with each other that they really don't have much interest in human contact, but they're getting there. Sandy is definitely the dominant one. She's always the first one to hop out of the cage and go running across the room. Coral is more timid. She loves to wrap herself up in my old robe though. I leave it in a heap in the middle of the room and she'll pull and tug at it until she's made a cozy little nest for herself. It's really quite adorable, especially when she's all tucked in with just her nose sticking out.

That's about it for now. I better get going and finish wrapping some presents. The house could use some straightening up too before Brad gets home.

I've gained a LOT of weight from the prednisone (current weigh-in is 130 lbs) and have developed that characteristic "kangaroo pouch" all CFers have come to know and love. I've made a deliberate decision this time to be content knowing that my lungs are clear and it's a lot to do with the prednisone. The side effects of the steroids are just something to bear.

I honestly have a sense of peace about my body right now. I like that my legs are heavier and that my chin isn't as pointy as it could me. I have plenty of cute, flattering tops that will make my tummy less obvious. Thankfully scarves are all the rage right now and wearing them also helps cover up my funny looking belly.

Believe me when I say I'm laughing about my experience at the grocery store. I'm thankful that a stranger would step in (albeit an ignorant stranger) to help protect my "unborn child."

It happened at the grocery store after having made all my purchases. I was standing in the breezeway putting my receipt in my purse like so many other do. I was about to put some change in the Salvation Army kettle when the Salvation Army volunteer starting making a fuss.

"Sir, excuse me, would you mind taking that over there?" Apparently someone had lit up a cigarette about 2 feet away from us. There was a bit of a disturbance as the smoke ranted a moment about it being a free country. That's when it really got good. The Salvation Army lady said "Well if it's a free country then this woman's baby has rights too and I doubt the baby wants to share your cigarette."

My what? Oh yeah. My prednisone tummy. My steroid baby.

Dropping in a little more change than I had original planned, I thanked the woman, offered her a smile and went on my merry little Christmas way. She didn't need to know the truth, it would have only confused or embarrassed her.

So tonight I'm eating for one (not two despite my abdominal swelling), and thanking God that there are some decent people left in the world who will verbalize for what they believe is right and decent. I'm just glad the lady didn't try to rub my belly :)

Well, it's been 2 weeks since I've been in the hospital. I haven't been able to post many updates this time unfortunately.

Things have actually gone really well, which is great! I came in with an FEV1 of 1.41 and now it's all the way up to 1.84L. Hooray! The doctor and the respiratory technicians were excited for me. It's been awhile since I've gotten that high. They're considering releasing me tomorrow or Tuesday.

My spirits have been good this time too. I've gotten almost all of my meds on time and I've been able to get relatively consistent sleep. Of course there were a few minor snags here and there, like when my blood sugar when all the way past 400 (eek!). I'm now on both the long acting insulin and the mealtime coverage stuff. I feel a lot better now, that's for sure.

Brad has been doing a good job of taking care of Sandy and Coral. He told me he won them over with a 5 pound bad of carrots. Ha! I can't wait to get home to give Brad a great big snuggle hug and start having a real life again. I feel like I'm finally at a sustainable point in my health.

Today I had a really nice breakfast. My whole family (Mom, Dad and sister) came early this morning with breakfast from Coco's, a table cloth, coffee, juice and even a centerpiece to make my hospital bedside table look nice. It was a pretty cool thing. I love that my family does stuff like that. Whenever I'm in the hospital they do whatever it takes to not just make it bearable, but to make it quite hospitable(pun intended) in here.

I've been doing a LOT of knitting while I've been here. So if you get a Christmas present from me that's home made, don't turn up your nose at it, I put a lot of hard work into it and long hours. :)