Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Wednesday, June 30, 2010

"Thank You" is not enough

Tomorrow I will have the opportunity to do something really cool: I am having lunch with the doctor who made the critical decisions almost 20 years ago that ended up saving my life. What on Earth do I even say?! The words "thank you" seem so inferior, so useless. You say thank you when someone holds the door open for you. You say thank you when a friend notices you were about to leave your jacket on the back of a chair at a restaurant. Thank you seems like almost nothing when you're thanking someone for making important choices that result in giving you the opportunity to LIVE. She may have just been "doing her job", but it deserves a lot more than just a "thank you".

I had mentioned a few years back that I wanted to meet Dr. M. I had never met her (except for obviously when I was a newborn) and she was such a crucial person in my survival that I really wanted to at least say hello. My mom made contact with her and we were all free tomorrow (Thursday) for lunch! I'm a little nervous, but mostly excited! Even though I don't feel like a "thank you" is nearly enough, I'm hoping that the fact that I took the life that she saved and have done something with it will be a greater "thank you" than I could ever say. The fact that I didn't waste the life she saved, and have taken care of the body she fought to rescue, will mean more to her than two simple words. After all, it is the goal of her job!

I'll let you know how it goes. Wish me luck! :]


Tuesday, June 29, 2010

Sore from shopping?!

I woke up with my back hurting, my arms hurting, and other random muscles hurting. I wish I could say these were from a great workout... but they were just from my fun shopping day with Mom on Sunday. This is insane. Honestly, unless I went and worked out in my sleep last night, that's the only thing I can even possibly be sore from. How sad is that? I mimicked the "taking off a shirt" motion and my arms surged with pain. Yep. It was my shopping day with Mom. *sigh* I've said it 100 times and I'll say it again: I'm old, fat, and retired.

I'm going running again today with sis-in-law Sarah if the weather is good. Last night the rain was so bad I, along with everyone else around me, had to go 40mph on the highway just to get any sort of clear vision. It was bad bad bad. So if the rain comes again tonight, we will put off running. Maybe I'll Wii Fit it up again. I do love the Wii Fit.

I'm thinking my neck is sore from sleeping with my puppy last night. If there is even a slight roll of thunder, she's super-extra needy for hours after it's over. With the serious storms last night, she sat in my lap and shook. I was going to take a picture, but my camera wasn't nearby. I had to take her outside to go to the bathroom one more time, before she went to bed, right in the middle of those storms. I walked out with her with an umbrella and plopped her in the grass. She was fine until some thunder roared: she jumped up and over and right out from under the umbrella. She wasn't as happy about being outside anymore. I finally got her to do some puppy business and we went inside. I got her a towel and kept her in it until I was sure she wasn't wet or cold. My neck might hurt because when she sleeps with me during storms, she is almost under me she's so close. She might at one point have wedged herself under my neck or my back, placing my neck at a funny angle. It's ok though. She needed me.

Time to wash Cayston stuff so I can do this morning's dose. Having 2 pieces for 3 treatments is wearing on my last nerve (but! I'm biting my tongue and being positive about it). Luckily, I end my first round of Cayston Thursday night!!! Only a few more days!!


Monday, June 28, 2010

Calm before the storm

These next few days are going to be calm and then *BAM* my life is going to be hit by a hurricane of tasks, responsibilities, schedules... blah blah. While I'm doing Gear Up (July 11-17; 25-31), I will be phone-less and computer-less (and blog-less). And I will be too tired to give an immediate update.

Oh, and any day now my niece will be born!! We're just playing the waiting game until she decides to make her appearance.

I found a swarm of ants in my car the other day. While I was driving. In case you don't know, I'm borderline phobic about bugs. This was a pretty nerve-racking experience for me. I called Chris on my way over to his house to let him know, so when I pulled up, I put on the parking break, and JUMPED out of my car, leaving it running. He came outside and squished as many as he could find. My car is getting cleaned (inside and out) today.

No real exciting news or anything. Oh, well, other than I get to meet Lauren! I'm going up north to where she lives early August and we are going to rock the town, masks and all! I'm really excited!! There will be pictures.


Friday, June 25, 2010

Bloggers, blogs, and bloggies?

The Andrea Standard Dictionary defines a "blog" as "Noun: An online journal being actively updated by a blogger; Verb: to actively write in the online journal."
The ASD defines a "blogger" as "Noun: Anyone who is actively writing in a public or private blog; a blogger may simultaneously be a bloggie."
The ASD defines a "bloggie" as "Noun: Anyone who is actively reading a public or private blog; a bloggie may simultaneously be a blogger."

Now that that's straightened out, it's time to blog in my blog about other blogs and bloggers. (The word 'blog' is starting to look really funny.)

My Go-To Guys/Gal:
Sometimes I have basic CF questions. Sometimes I have more complex questions. Either way, I usually want those questions answered! Googling stuff about CF usually gives me WAY more information than I wanted, tending to result in information overload and a sob-session. I do my best to avoid just parading into the unknown world of the internet with CF questions, but I still want my questions answered. They are usually not questions that I really need to call my doctor for, but I can't ask any of my friends either (seeing as they know way less about CF than I do). So what do I do? I have found a few blogs that are chock-full of good, honest information that I really love. More importantly, these people are actively answering questions with a *positive attitude* and a heart for all cysters and fibros and their families. There are 3 I am going to list because these are the 3 that I actively go to:

Ronnie has on his site the phrase: "It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished." This is not just something he wrote and ignored. I have never seen a question he didn't answer nor a comment he didn't reply to. Ronnie and Mandi and their newly-married selves are passionate about keeping the CF community positive, active, and inspired to keep fighting. His blog is a wealth of knowledge and a place for funny stories, goofy pictures/videos, and of course good, solid advice.

CG has always been a joy to read. I love her blog because it really does get down past the fluffy journalism and into the tough stuff. She's so real with all her posts and her readers I feel like I've known her forever. Her writing style is informative, creative, and usually pretty hilarious. Oh, and the fact that she calls mucus "yuckies" makes me laugh. The latest drama on her blog is her too-long of a wait for new lungs, but she posts about all things CG and CF related!

I absolutely love this site. Fatboy makes me smile for a couple of reasons: 1-On his blog, his wife's "name" is Beautiful. That's just too cute. 2-I've found that on a lot of topics, we agree 100%. His recent post about smokers, for example, included all my feelings that I'm incapable of putting into words. Feels good to know someone can convert my wordless rage into a readable and relatively calm explanation. Also, Fatboy obviously appreciates every comment left on his blog because he has a response to each one! He's a great site to go to if you want inspiration, laughs, great stories, and an honest look at CF and how it affects us all.

Friendship through CF
Lauren is a girl I met on a CF forum, back when that was my thing, and I loved that she was my age and had an active lifestyle and a positive attitude through it all. She's one of the girls I go to about 19yr old, girl, college stuff! We have a lot in common so it's easy to go to her about stuff that really only applies to us. She's got such a way with words and writes so elegantly and passionately, that her blog is definitely one to save when you want to read about truth, determination, and the love of life!

Jennifer Reasoner is a mom with 3 boys, including a set of twins, one of which has CF. He's had quite the battle already, but at age 1 he's already deployed the fighter within and takes whatever comes at him with smiles. This blog is where Jennifer writes about not only her CF son, but her entire family, and that's one thing I love about this blog. One thing I've learned about getting past CF is looking past it. Realizing that despite all of the treatments and pills, I have a family and many friends who love me dearly and a life I plan on living. Her blog is full of love and compassion for her son's health and for her entire family. Check it out!

Coming soon to a computer near you....
My mom is considering the idea of starting a blog herself!! It's a summer project for the two of us. She wants to make it a blog full of good information for CF parents everywhere. It will be less of a day-to-day blog and more of an information center for CF parents needing answers. Becoming a parents is hard. Becoming a parent of a kid with any disability is even harder. My mom wants to take the knowledge she has from raising a child with CF and make it accessible to anyone. No one should have to go through that struggle alone. I'll keep you updated on the progress!


Thursday, June 24, 2010

Mild vs. Delayed

I read an article late last night, posted by Jerry Cahill (his website) on facebook. Here is the link to the article.

This article really intrigued me. In case you don't want to read it, here is the basic overview: A woman, at age 50, was diagnosed with CF. She has an "unusual" CF gene and the doctor they interviewed said it was the cause of her late diagnosis. "It's not really mild CF, it's delayed CF." he says. This really interested me.

I too have a unique gene (1078delT) and had a very healthy childhood. If I'm reading this right, that means possibly that my CF didn't kick in until later in my life. Obviously it wasn't waiting until age 50, but maybe age 13. The article mentions that this lady had lung problems and sinus infections, but obviously not to the extent of CF or she would not have fared so well for so long without the daily treatments and regimens CFers adhere to daily. Could this have been me too?

I'm starting to believe that it was. We have always said things like "she has mild CF" or "she just had an unbelievably healthy childhood!". These things, and my years of nearly perfect checkups and scarce infections actually agrees with the theory that my CF didn't become a full-fledged disease with all the modern-day CF problems until I was older. However, also stated in the article, that (paraphrased) those who were diagnosed later in life [or had delayed CF] still deteriorated as quickly as those diagnosed at birth [or had punctual CF].

The only thing that gets me is that I was diagnosed at birth, despite my extremely healthy childhood. The meconium ileus was the indicator and the sweat test was the confirmation.

So while whether I had delayed CF or not doesn't change anything for me, it certainly had me do a second glance at my past.

Another thing I've thought about before.... which is worse: having to do this CF thing your whole life or at age {x} having it thrown at you and have to start from there? I mean, I guess it really just depends on how you look at it. Having it from birth sucks because there's never a time where you didn't have to pop pills or remember to get treatment in before spending the night at a friend's house. However, the benefit is that this lifestyle is familiar and unchanging, always to include meds, The Vest, breathing treatments, and the occasional clean-out. On the flip-side, those diagnosed later in life have those days of freedom of the rituals of CF. Also, they get an answer as to why they have become so sick. However, that's not exactly a cheerful answer and now their lives have been completely altered and they must find a new daily ritual including those all-too familiar with those with a lifetime CF membership.

So I guess they both balance out. *shrugs* Bottom line, CF sucks for everyone!!! haha


Wednesday, June 23, 2010

Must watch video

Please, take 6 minutes out of your day to watch this video off of America's Got Talent. I posted it on facebook and twitter. It's so inspirational to the CF community; actually to anyone. These two beautiful girls have equally beautiful voices and I wish them the best of luck on the rest of their AGT journey!

On a side note, I went running today! I'm officially buddying up with sis-in-law Sarah and we started our frequent running today.

And in case you're not keeping up with the World Cup... GO USA!!!!!!!!!! We pulled off a VERY important goal 2 minutes into stoppage time, so almost the 92nd minute. INSANE!! Because of that, they won the bracket and advanced. GO USA!!!!!!!!


Tuesday, June 22, 2010

DEXA and stuff

I did the DEXA bone density scanner on Monday. The result: I have very good bones! :] I guess all that calcium over the years did some good. Thanks Mom!

I am FINALLY back in my own bed for good. I am done house-sitting, thankfully, and can't wait to curl up with my puppy for the night. She's anxiously waiting me to finish the Vest, do Cayston, scoop her up, and go to sleep (just look at that sad face!!). But I keep having to stop the Vest because it hurts my stomach and my back. Not sure if it makes a difference that I keep stopping and restarting it, but I have to.

I went to visit my college today! I felt so good to be "home". I went and saw my Big, Elizabeth, and then my study buddy Ragan. It was fun. I miss those girls and that town so much.

This Friday, LBASYC is visiting my home church! I will definitely be at that concert to see my friends and hear their beautiful music. As soon as the concert is over and I hug a few people, I'm driving out to Chris's camp to watch his Friday night campfire skits. He's been ragging me for 4 years to come watch so, since I promised I would this year, I figure I should keep that promise. ;]

I have a few more days of relaxation and then my life picks up pace again (not always a bad thing!). I will be going to the home LBASYC concert *next* Friday and then getting up Saturday morning, July 3, and riding with Chris down south to visit his sister. I'll be riding back with his parents on the 5th so I can make a meeting on the 6th that is for the camp I start working on the 11th, after a skit filming I have on the 10th. BUSY BUSY!!! I can't wait. I'm going to be very tired, low on energy and blog posts, but having a great time.

Alright, NOW it's time to go to sleep! Gnight!

Oh, and HAPPY BIRTHDAY JASON!! I love you, Brother. :]

Friday, June 18, 2010


I am getting paid $25 a day, not counting food and gas money, to play with/care for 5 dogs and 3 cats, ward off spiders, scare off mice, water plants, and live in a very old, mid-construction, and kinda dirty, house 30 minutes south of town with one of my best friends. Ok... I guess I can handle it. (see picture of house)

I got to see my nephew the other night and it made my world. I've missed him a lot. :]]]]

Bright and early Friday morning, I went golfing with the Dad! More importantly, I drove the golf cart around instead of golfed but it was fun. Then we watched 4 or 5 episodes of The Big Bang Theory. It fits our family quite well! lol

Hmm I wish I had more to say. Just house-sitting. I drive home every day to wash/sterilize Cayston stuff because there is no good place to clean it at at the mansion.

Time for more World Cup while I wait for Cayston stuff to sanitize so I can do my afternoon one, wash, and then sterilize it again.

Monday I have a bone density test. Quick, painless, and then I'm outta there. Going running with sis-in-law Sarah on Monday too. We're going to try to get into the habit of running together a few times a week. She's trying to lose baby Carter weight and I'm just trying to stay healthy, obviously. Hopefully we can both accomplish our goals!


Monday, June 14, 2010

Home, sorta

I got home last night from Panama City Beach. My trip was wonderful, filled with beach visits (day and night), eating at some great restaurants (Margaritaville, Reggae J's, Back Porch, 5 Guys Burger & Fries, etc), hangin' with fam #2, SHOPPING, and jet skis. Ooooh jet skis. I love them. I loved them before, but I *LOVE* them now. I was sore for 2 or 3 days after crazy wave jumping, and still have bruises on the inside of my calves, but it was all totally worth it.

The trip wasn't all great though. There was one thing that rode my nerves more than anything: the insane amount of smokers. There were so many times when I'm sitting on the beach, at night when there aren't that many people out, and someone sits down nearby and lights a cigarette upwind from me. So many times when I was out shopping, I had to leave areas because, as I'm browsing the outdoor areas, or resting my feet on a bench, the smoke rolls in. I'm seriously paying for it too. It was an unavoidable amount of smoke sometimes, and I can feel some junk now piling up in my lungs, more so than before the trip. Not bringing the Vest hasn't helped either though. I took the flutter, but it's not as affective against mass inhalations of smoke as the Vest is. So I'm doing an extra Vest treatment right now, trying to fight back against my struggle to breathe. I really can tell a difference after so much smoke. It really does affect my breathing pretty quickly. And if I'm willing to do extra Vest treatments, that should tell you how frustrated I am. It does feel good getting a lot of this junk up. And, thankfully, on that trip I had a good friend who ran away with me and helped me kindly ask people to smoke away from me (those time when I had been "camped out" on the beach loooong before they showed up). She let me rant about all the smoke a ton, which helped because it was really starting to work on my last nerve.... ugh. (Thanks Kid)

Still doing Cayston. I wish I could feel better, and hopefully I will closer to the end of my first 28 days, but right now I feel worse because of all the smoke. I'm expecting things to take a positive turn soon though.

Around 6pm tonight, I move out to that mansion with my dear friend Casey. As I mentioned before, we are house sitting for roughly 2 weeks. I'm pretty excited but also kinda nervous, with the more I learn about this place. It's under a lot of remodeling right now... a lot. There is one working bathroom, and it doesn't work too well. The dryer doesn't work. Mice have been spotted in the kitchen. I'm hoping there's internet so I can keep the blog updated.

So remember a little while ago I switched from Pancrease MT20 to Zenpep MT 20? I haven't noticed a difference. It has not fixed any of my GI issues like it was suppose to nor really helped my chronic sick feeling, even when I take all the other meds. *sigh* I'll keep taking them, in hopes that maybe it just takes my body a while to get used to new stuff, and talk with my doctor at the next appointment.

Time to do a little at-home relaxing before I pack and head out to my next vacation/adventure. Pictures of my new adventure are coming up, but here are a few more from my beach vaca! Click to enlarge them.


Saturday, June 12, 2010

Last day

Today is my last day at the beach. I've been a pretty great week! I've met lots of people, seen and done lots of fun things, and really enjoyed the vacation. I saw sting rays and dolphins for the first time! I rode jet skis (and paying for it with sore muscles now) and had a blast. Right now, I'm sitting in the super nice condo waiting for the USA vs. England soccer game to start.

Cayston is interesting. It really is truly amazing how something can simplify and complicate your life at the same time. I spend so much time cleaning and spend very little time actually using it. It also had such great potential to help me, health-wise, so I'm biting my tongue and doing what I have to do without complaining. I'm trying. I am ready to be done with the first 28 days, but I'm only at day 9 or 10 right now. Because I have to do it 3 times a day, it seems to be taking even longer. Ahh sorry! No complaining!!!

Hopefully I'll get a full beach trip post when I get home. Actually, I'm house-sitting as soon as I get back, and I'm hoping they have internet out at this mansion. If they do, I'll definitely get a post up.


Tuesday, June 8, 2010

Greetings from the beach!

Hi there! Just checking in from Panama City Beach in Florida! That's me and my "sister" Morgan. I'm here with her family. Here's a quick update (because the computer is about to die!!): we've been really enjoying the beach, especially at night! That's when we spend our time on the beach people watching. It's great fun. Details later.

Cayston is a bit of a hassle, but I bite my tongue and ignore my slight annoyance with washing it so often because I just keep reminding myself how much easier it is for my schedule than TOBI and how my life is being simplified. And how I really do feel a little bit better. Details about that later too.

Longer post later!


Friday, June 4, 2010

Cayston: Dose 3

I am about to do Dose 3 of Cayston. So far I don't feel any different, but I *LOVE* how fast it is. After the first dose, which finished in about 1 minute and a half, the machine beep, a little sign came on the screen, and I flipped out. "What does that mean?!? It can't be finished yet! What went wrong??!" I even checked the medicine receptacle to see if some got stuck or something. I was floored. It really was just done. I did the evening one and made it a presentation for my mom, who was equally as amazed. It really just is cool. It's silent, speedy, and s... sweet.

I was a little worried about taste, after TOBI's sticky gross taste. But Cayston really only has a faint taste of the adhesive on the back of envelopes or stamps, so it's easily bearable.

I cleaned the whole thing yesterday for the first time too. That took a little more thinking! It's really not hard once you understand it, but my mom and probably looked hilarious being stumped over the directions of a baby bottle cleaner. But the cleaning process is way less extreme or tedious than that of regular treatment pieces, but it will have to been done more often seeing as I only have 2 sets right now.

Ok, it's Cayston dose 3 time.

Oh, and advice from a fellow Cayston user: rinse your mouth out with mouthwash or something afterwards because otherwise you might develop thrush. Thanks for the advice, CFFatboy!


Thursday, June 3, 2010


Cayston just arrived. I mean literally, like 5 minutes ago or less. I'm still shaking. I'm so nervous but excited at the same time. I handle change now much more swiftly than I have in the past, but still with jitters, sick feelings in the stomach, and anxiety.

It's probably been there since I was in the shower earlier, but I didn't check until I was about to leave to go to my grandmother's house. So peeked through the front door blinds and sure enough: one cardboard box and one Styrofoam box. I pulled both boxes inside, the cardboard box significantly lighter than the other one. I thought the cardboard box was a shirt I had ordered so I opened it up first (less stress). I honestly cannot describe my emotions when I saw what was inside. It was a mixture of confusion, anxiety, amusement, fear, nausea... not sure what else. It was mostly confusion. I was doing my very best to try to understand why someone would ship to my name a Nuk baby bottler cleaner and some Ziplock storage containers. My first thought was it was ordered in my name as to hide it from Mom so Dad could give her these things because of Baby Carter... but that really didn't make sense. Strangely enough, the correct answer did pass through my brain but didn't register until it came through a second time: it's to clean the Cayston stuff. The Ziplock containers are random but I'm sure I'll figure out the intended use for them soon. I pulled that stuff out and found a carrying bag and a really cute/tiny bottle of detergent. After I had emptied that box, I turned to the one that made my stomach do gymnastic-type flips. I cut it open and pulled out the 2 boxes that contain something to do with the actual machine for Cayston. Cayston itself was in a metallic silver bag that reminded me of space food. I picked it up, bag and all, and stuffed it in my fridge. I just wanted to get it away from me for the moment. My stomach couldn't take much more.

I've started sifting through the short and repetitive pamphlet they gave me in the first box, mostly about cleaning the Altera Nebulizer handset. It's kinda cool looking, I'll give them that.

I'm doing albuterol right now and then I'm going to take the Cayston to my grandmother's house (where my Dad is) because I really don't want to do the first dose alone, nor right before I drive somewhere. I don't expect anything to go wrong, but it eases my mind.

Wish me luck. I'm still a little nervous but also extremely excited about what it can do for me.

Cheers, Cayston.


Wednesday, June 2, 2010

"..I'm addicted, it's a crisis"

So I do have a new addiction. But it's not a crisis. I am so totally sold out on the Wii Fit. See, I got really tired of running outdoors (hot, gross, bleh) but I didn't want to stop working out. So I switched to running with the Wii Fit (along with other workouts). The runs do make me cough, so I figure they're doing their job. I also regularly do yoga, strength training stuff (ab work, leg work, etc.) play games that make my calf muscles hurt the next morning (ow!!) and play some Wii tennis/boxing to beef up those arms. I love it. I really do. As soon as I finish this post, I'm going to do another hour on it. I do about an hour each day. It burns, I really do get a workout from it. And it keeps track of my weight and BMI. It SAYS I gained 5 lbs yesterday, but knowing me, it probably has something to do with when I ate. But the Wii Fit was pretty excited!

Another reason I love doing with Wii Fit is that I know I'm working on getting the body back I used to have. I used to be so strong and so toned, but then I got fat, old, and lazy (haha) and lost most of it. I want to be back in shape, and not just being able to run a mile without too much strain but have my awesome leg strength back, my amazing abs once again, and maybe actually build up some arm strength. My right arm is already stronger from all that Wii tennis I do, but my poor left arm is getting left out. I'll balance it out though.

Ok, seriously, I really want to go play so I'm gone.

Beach in 4 days.
Chris comes home in 3 days.
4 days left to organize the boxes brought home from college.