Tuesday, January 31, 2012

Some pretty awesome news

Most of my CF friends (okay, probably all of you) already know this by now. In fact, most of you beat me to the punch and have already blogged about it, tweeted it, shared it on facebook and ordered a cake with the news scrawled across the top in creamy frosting. (Or maybe the to-die-for cake I ate at my dad's house tonight in celebration of his birthday is just fresh on my mind.)

Anyway, for those of you not in the know, the good news is that today the FDA approved a new drug for the treatment of cystic fibrosis. This drug (called Kalydeco) is the first of it's kind, targeting the underlying cause of CF rather than just the symptoms. Very simply put, it helps the faulty CF cells function normally. Kalydeco targets a specific gene mutation (G551D) that only about 4% of the CF community has but for those people, this drug will be life-changing. Let me rephrase that: for some of my dearest friends, this drug will be life-changing.


I don't carry the G551D gene (I'm a double DF508, in case you were wondering), but that doesn't put a damper on my excitement. Today is an important milestone for the world of CF! It is a giant step towards finding a drug (or perhaps a combination of drugs) that will benefit every single one of us, and maybe even one day... a cure.

I have to be honest. I've not been very optimistic about seeing a cure in my lifetime. I've never been able to realistically picture myself as an old woman. I've always believed whole-heartedly that it was a cause worth fighting for, but deep down I've never felt that I'd personally see a cure. But then today, hours after first hearing the news about Kalydeco, I was sitting in my car alone and I suddenly started to cry.

I cried thinking of all the people who haven't made it this far; people like my own sister and several of my friends who aren't able to share in my excitement today because for them, this breakthrough didn't happen soon enough. I cried thinking of the short conversation I had with a friend of mine just last night. We were talking about Kalydeco as well as other drugs that would someday follow when I told him, "I promise to hang on if you do." (Who knew it would be approved the very next day?) And I cried because for the first time that I can remember I am not just hopeful, but I really believe.

This may not be a cure, and it may take months or even years before all the kinks are worked out and drugs like this are available to everyone, but this is BIG. And it's happening RIGHT NOW. So tonight lets raise our glasses to those who will benefit from this drug, to those who were taken from this life too soon but remain in our hearts, and to HOPE.

Our future has never looked so bright.

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30 Days of Blogging: Day 16

Day 16: Describe a passion you have

Hoo boy, this could be fun. I can't count the number of times I've been told that I'm a "passionate" person. Though I'm pretty sure that oftentimes people choose to use the word "passionate" only because it sounds nicer than "obsessive" or "batshit insane", I take it as a huge compliment each time I hear it! I believe in living passionately -- in fact I believe it's the only way to live! -- and I'm truly passionate about many things.

I'm passionate about my family. I'm passionate about life. I'm passionate about my friends, old and new (once you make your way into this heart of mine, you're there to stay). I'm passionate about good food. I'm passionate about being a mom. I'm passionate about sunsets and listening to aspen leaves rustle in the wind. I'm passionate about music. The list goes on and on and on. I believe that anything worth doing or enjoying or devoting my time to, is worth doing so with passion!

Since I'm supposed to pick one passion and the point of this blog challenge is to help you get to know me better, I'm going to tell you something that some of you may not know about me: I am passionate about pregnancy and childbirth.

Because I am who I am, when I was pregnant I studied every piece of literature I could possibly get my hands on that had anything to do with pregnancy or babies. I'm not the kind of person to go into something like parenthood blindly, so I wanted to educate myself the best I could. I was absolutely fascinated by pregnancy and what my body was capable of doing. I knew precisely what was happening when it was happening and I freely shared that information with anyone who asked... and many who didn't.

The day I had Morgan was hands down the best day of my life, not only because I became a mom on that day, but also because labor and delivery was an absolutely incredible experience for me (I've often described it as "the most sacred and spiritual experience of my entire life"). I enjoyed every minute of my 20+ hour labor, right up until the "PLEASE JUST SHOOT ME NOW!" part.  Most people think that this in itself makes me certifiably crazy but as we've already discussed, I prefer the term "passionate".

It wasn't until several months after I had Morgan and realized how different my birth experience could have been (even though it went well) that I really started reading up on natural childbirth. Again, I was absolutely fascinated! Since then I have read dozens of birth blogs, watched several documentaries about childbirth, spoken in detail with a few home-birthing women, and read countless books on the subject. I simply can't get enough of it. Adam frequently asks me, "Honey, you do realize you're not even pregnant, right?" And it's true. I'm not pregnant nor even planning to be in the near future, but once something sparks my interest it's nearly impossible for me to forget about it.

So there you go. One of my many, many, many passions in life. What about you? What are you passionate about?

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Once again, the list:

Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship status
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt or OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo of yourself plus 3 good things that have happened within the last 30 days

Saturday, January 28, 2012

30 Days of Blogging: Day 13

A few of your favorite quotes, mottos or verses.

I love good quotes! I can literally spend hours at a time reading the words of people much smarter than myself. I got a book from my employer a few weeks ago simply called Great Quotes from Great Leaders and it has quickly become one of my all time favorite books. Some quotes that stood out to me are:
"No one is born hating another person because of the color of his skin, or his background, or his religion. People must learn to hate, and if they can learn to hate, they can be taught to love, for love comes more naturally to the human heart than it's opposite." ~ Nelson Mandela
"We must become the change we want to see in the world." ~ Mahatma Gandhi
"Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved." ~ Helen Keller
"We can't help everyone, but everyone can help someone." ~ Ronald Reagan
"If we have no peace it is because we have forgotten that we belong to each other." ~ Mother Teresa
Some other quotes I like:
"When you change the way you look at things, the things you look at change." ~ Dr. Wayne Dyer
"Be kinder than necessary, for everyone you meet is fighting some kind of battle." ~ Unknown
"You only live once, but if you do it right, once is enough." ~ Mae West
And one more of my favorites; I have this one typed up on a piece of paper and taped to my bedroom mirror so I see it at least once every day:

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in a quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return. " ~ Mary Jean Iron

Thursday, January 26, 2012

30 Days of Blogging: Day 11

What's in your make-up bag/ purse?

They say you can tell a lot about a woman by the contents of her purse. What's in my purse varies from day to day, but two things are certain: a) there is always way too much crap in there and b) when searching for something specific, I will have to dump the entire contents of my purse out on the ground to find it. Oh yes, I'm that lady.

I'm not sure what it says about me, but the following things are currently in my purse:

- my wallet
- a hairbrush
- a bottle of enzymes
- a half-eaten package of licorice
- some bills
- 73 cents in change (score!)
- a notebook/day planner
- an albuterol inhaler
- a bottle of ibuprofen and Tylenol (I usually carry both)
- a butterscotch See's sucker
- a chocolate Snack Pack (because who doesn't carry pudding in their purse?)
- several crumpled up receipts
- lip gloss
- chapstick (which is not the same thing as lip gloss)
- a car charger for my cell phone (that I've been looking for since I left the hospital)
- an almost-full pack of gum
- a band-aid
- a bottle of Victoria's Secret lotion
- hand sanitizer
- wet wipes

And before you ask, let me just say that, yes, it is necessary for me to carry all of those things around. Which is why all the purses I own are large enough to easily smuggle a small child.

Tuesday, January 24, 2012

30 Days of Blogging: Day 9

A photo of the item(s) I last purchased:

Milk replacer, bottles, syringes, antibiotics,
vitamin and iron supplement

Without going into too much detail, I just want to say that yesterday was a very long, very stressful day. It started with a healthy mama dog giving birth to a sweet little puppy with an awesome set of lungs, and it ended with my sister-in-law and I bottle-feeding nine (count 'em.... NINE!) newborn puppies because their mama was too sedated, sore and weak from surgery (a C-section and emergency spay) to care for them.


Aren't they the cutest little balls of fur you ever saw?

But we're doing okay! Dixie is feeling noticeably better today and all the puppies made it through the night... even the tiniest one who had me pretty concerned last night. Dixie has been strong and alert enough to care for the puppies (three or four at a time) throughout the day and she's doing a great job, though the puppies still need to be supplemented since her milk is having a hard time coming in (my guess is from all the stress and blood loss during surgery).


Morgan's favorite thing about the puppies is
their bright pink feet and noses

I, on the other hand, am COMPLETELY EXHAUSTED! More than anything, this experience has made me realize that I was NOT cut out to be the mother of many. This whole "getting up at all hours of the night to feed nine hungry mouths" thing isn't as fun as it sounds.

Now if you'll excuse me, there's a Red Bull in the fridge and a hungry puppy calling my name.

Saturday, January 21, 2012

30 Days of Blogging: Days 5 and 6

Since I've missed a few days, and since days five and six go hand-in-hand for me, I'm doing both of them today. What happened to day four, you ask? Forget about it! (I hope you read that last part in an exaggerated Donnie Brasco-style New York accent, because that's totally how I'm saying it in my head. "Fo'get about it!")

Day 5: Talk about your pets
Day 6: A photo of an animal you'd love to keep as a pet

As Dixie enters the final days of her pregnancy (and has even started showing signs of the first stage of labor) I think it's an appropriate time to tell you a little more about her.

Dixie then

A few things about Dixie:

- She is a five year old french bulldog. We got her in 2007, and she was the first real pet that Adam and I got together (fish are not "real pets" in my book).

- Her full name is Dixie Belle; some of her nicknames include Dixardoodaloo and Puppalup.

- She likes to shower. When she was a puppy, if I didn't close the bathroom door tightly behind me, she would frequently push the door open with her nose and jump right into the shower with me.
Dixie now - ready to
POP at any moment

- While she'll drink from her water dish or the toilet bowl if she must, she prefers to drink cold water straight from the bathtub faucet. She likes to jump into the tub and lick the faucet, making a click-click-click sound until I turn the water on for her... which I will do eventually. I've been facilitating her ridiculous behavior for five years now, there's no point in trying to change things this late in the game.
 
- She snores and farts like a drunken old man.

- Dixie has actually had puppies once before, and as it turns out... it was one of the most traumatic experiences of my entire life. She had to have a C-section (which is very common for french bulldogs) and, though the surgery went fine and she had 5 healthy puppies, she did NOT react well to the drugs. She was still a little loopy when she came home from the vet, and long story short: she ended up killing (and eating most of) 4 puppies in a matter of about 15 minutes. Fortunately, Adam was able to save the last one. After keeping mama and baby apart for several days and reintroducing them gradually, Dixie eventually became a great mom. Needless to say, we are hoping things go more smoothly this time around.

This is the only recent picture
I have of her that isn't just a blur
Our other dog is little Nora Kae, a miniature dachshund. My family had a "weiner dog" named Appy for a looong time (pun intended) when I was growing up. She was such a funny, sweet little dog! I've always told Adam that I wanted another dachshund at some point in my life, so when the opportunity to get Nora presented itself I just had to do it. Adam was a little surprised and will claim that he doesn't like her very much, but he definitely has a soft spot for her (I catch them cuddling together on the couch on an almost daily basis). She is such a sweetheart and has been a great addition to our family!

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Are you taking part in the 30 day blogging challenge? Leave a link to your blog in the comment section below so I can go check it out!

Wednesday, January 18, 2012

30 Days of Blogging: Day 3

Day 3: My Idea of the Perfect First Date

Some of you may not know this, but I haven't been on a first date in almost a hundred years. Okay, maybe it's closer to 7 years, but the point is that I haven't been in the dating circuit for quite sometime. I was never that girl who wanted to have dinner at a romantic restaurant followed by a long walk on the beach or anything like that. Most of my dating experiences consisted of "hanging out" with my guy friends. In fact, Adam and I never even had an official first date.

One of the few actual, honest-to-goodness dates I went on (which happened to be the first and last with this particular boy) was so awkward that instead of sharing thoughts about a PERFECT first date, I'm going to bend the rules and share a few tips about what NOT to do on a first date.

1) Do NOT take someone who has neither read the Harry Potter books nor seen any of the Harry Potter movies to the third movie and spend the whole time trying to bring her up to speed with what's happening. She doesn't care.

2) Do NOT offer to buckle her seatbelt for her. Opening doors is nice, buckling seatbelts is a little Ted Bundy-ish.

3) Do NOT under any circumstances pass gas in front of her. Propriety is extremely important to us ladies. Wait until at least the third date before you rip one, dude.

4) If she clearly doesn't want to hold your hand during the movie (no matter how much time you spend "accidentally" tickling her arm), do NOT try to kiss her at the door when you drop her off.

5) Do NOT assume that going on one date means you are an exclusive item, and do NOT tell your friends that you "totally hooked up" with her.

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If you want to jump on the 30 Days of Blogging bandwagon, it's not too late! You can start at any time. Let's have some fun and get to know a little bit more about each other. Here's the list again:

Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship status
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt or OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo of yourself plus 3 good things that have happened within the last 30 days

Tuesday, January 17, 2012

30 Days of Blogging: Day 2

Two days in a row? I'm on a roll, folks!

Day 2: My Favorite Movie

I'm a total sucker for old musicals like My Fair Lady and Seven Brides for Seven Brothers. I remember watching them and singing right along with my mom when I was younger (by the way, thanks for that, Mom). In fact, I still remember most of the songs word-for-word... which I realize is kind of lame.

Okay fine. If I were being totally honest, I'd tell you that my cousin Niki and I still act out June Bride on a regular basis. I'm always Liza. Bonus points if you know which one is Liza.


My favorite movie made in more recent years is Pirates of the Caribbean: The Curse of the Black Pearl (it's gotta be the first one though, they really went downhill after that).

I've been fascinated by pirates since I saw Muppet Treasure Island as a kid, and I've loved Johnny Depp since Edward Scissorhands (let's try not to focus on the fact that I had/have a crush on a recluse with scissors for hands). Put the two together and it's my personal slice of heaven on earth.

"But he's soooo dirty," people say. To which I reply, "Um, yeah." That's a major part of his appeal, people! Do you not understand what a pirate is? Besides... something tells me that even with all the dirt and grunge and bad teeth, he'd still smell like a meadow.

Monday, January 16, 2012

30 Days of Blogging: Day 1

A few of my blogger friends are doing this, and since my sister in law (Hi, Ember!) is always telling me to post more often, I thought I'd give it a try. Now, I have to be honest and tell you up front that I'm not going to follow through with this EVERY day, but I'll definitely be more inclined to post something if I have an outline to follow. The less thinking involved on my part, the better!

I'm posting the list here, in case any of you want to join. You can jump in at any point; the posts don't have to coincide with the day of the month or anything like that.

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Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship status
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt or OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo of yourself plus 3 good things that have happened within the last 30 days

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So, here we go... Day 1: My Favorite Song

Like most people (I'm assuming) my favorite song changes with my mood or what I'm currently going through in life, which means that my list of favorite songs is pretty long. But one of my ALL TIME favorites is Man in the Mirror by Michael Jackson.

Not only am I a huge fan of Michael's, I think the message this song shares is incredibly powerful (some say it's "cheesy", which is okay since I'm also a huge fan of cheese). I've always been a bit of a hippie at heart and, cheesy or not, this song really tugs at those heartstrings.




I'm gonna make a change,
For once in my life
It's gonna feel real good,
Gonna make a difference
Gonna make it right

As I turn up the collar on
My favorite winter coat
This wind is blowing my mind
I see the kids on the street
With not enough to eat
Who am I to be blind
Pretending not to see their needs

A summers disregard, a broken bottle top
And a one man soul
They follow each other on the wind ya' know
'Cause they got nowhere to go
That's why I want you to know

I'm starting with the man in the mirror
I'm asking him to change his ways
And no message could have been any clearer
If you want to make the world a better place
Take a look at yourself and then make a change

I've been a victim of a selfish kind of love
It's time that I realize
There are some with no home, not a nickel to loan
Could it be really me, pretending that they're not alone

A willow deeply scarred, somebody's broken heart
And a washed-out dream
They follow the pattern of the wind ya' see
'Cause they got no place to be
That's why I'm starting with me

I'm starting with the man in the mirror
I'm asking him to change his ways
And no message could have been any clearer
If you want to make the world a better place
Take a look at yourself and then make a change

You gotta get it right, while you got the time
'Cause when you close your heart
Then you close your mind

Friday, January 13, 2012

A little bit of this, a little bit of that

- I lied. In my last post I said that I'd write more while I was in the hospital but, well, I didn't. Please don't hold it against me. The good news is: since I'm not writing this from the hospital, clearly that means I'm home!

- I was discharged today (sooner than expected), just nine days after I was admitted. I responded really well to the antibiotics and my PFTs jumped right back up to baseline... plus some. I'm feeling pretty great, and I hope to stay that way for quite some time.

- My x-rays actually looked better than they did six months ago. Two of my doctors commented on how rare it is to see improvement in CF lungs and encouraged me to continue doing "whatever I've been doing". I'm thrilled about this!

- No matter how many times it happens, I don't think I ever realize how sick I was feeling until I'm feeling better. When I start to get sick, it's easy to tell myself that I'm not feeling too bad, but after a few days of antibiotics and inpatient treatment I feel such a big difference that it's impossible not to look back and think, Yeah, I guess I really did feel like crap.

- Morgan is having some major post-hospital anxiety. Earlier this evening when I stepped out of the truck to use the Redbox, she had a complete meltdown (even worse than 20 minute meltdown she had this morning when I insisted she wear pants in public). 

- I left a fairly-normal/maybe-a-little-larger-than-normal-looking Dixie at home just over a week ago and returned to find this:


Yep, Dixie's gonna be a mama... again (those of you who know her history as a mother may be surprised that we chose to breed her again, but I'm 74% confident she won't eat these puppies). She is huge and miserable, and she still has almost two weeks to go. For her sake (and mine) I'm hoping those puppies are about done growing. Any guesses as to how many are in that tummy of hers? 

- Just one more thing real quick: IT'S SO GREAT TO BE HOME!

Friday, January 6, 2012

A new year = new hospital bills

The first post of this beautiful new year is being brought to you from one of my very favorite places on Earth (can you feel the sarcasm?) -- THE HOSPITAL!

I caught a cold about a month ago and even though I got over the initial cold symptoms (runny nose, sore throat, etc.) fairly quickly, things settled in my lungs and ultimately I wasn't able to fight it off on my own. When I came to clinic a couple days ago, my PFT's were quite a bit lower than I expected - most likely because this happened over the course of a few weeks. I was gradually losing what added up to be about 25% of my lung function, but since it was just a little bit here, a little more there, it didn't seem so bad. My body was able to acclimate to the changes and I convinced myself that I'd be fine.

CF can be funny that way; sometimes it sneaks up out of nowhere and knocks you on your butt so fast it leaves you seeing stars, and other times it takes quiet little jabs so sneaky that you almost don't notice until one day you find yourself blogging from a hospital bed... again.

I expect to be feeling fantastic in no time! Rather than think of this hospitalization as the end of a good run of health, I prefer to think of it as the launch of a new, healthy year. 2012 is going to be great, friends!

I'm sure I'll post more while I'm here in the pokey (I'll definitely have some free time on my hands) but right now there's an adorable little blondie who is demanding some snuggle time with her mama. I'd better go attend to that.