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.

-Annie

Silent Saturday

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:

RunSickboyRun

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.

Cystic Gal

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!

CF Fatboy

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 B.

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!

The Reasoner Twins

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!

-Annie

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

-Annie

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!

http://www.youtube.com/watch?v=2W5Q3Yal3yQ

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!!!!!!!!

-Annie