2012 Year in Review

Here's the best that I can remember from 2012 with links to many of the highlights...

January-In January Mckenna was turning 3-months old and still quite the little peanut (that hasn't changed). I was able to show off my  "daddy skills" as Mandi returned to work and left me on Mr. Mom Island. It's still very enjoyable to spend one-on-one time with Mckenna and something I very much look forward to each day. We also had our first road trip as a family of three when we made our way out to California to visit with Auntie Kirra and Uncle Tyler!

February- I celebrated my 32nd birthday by documenting the entire day in pictures. Mandi got me a sweet camera for Christmas that ended up not getting to us until February because of the terrible tsunami in Japan. I went a little picture crazy to say the least! I was hospitalized for 14 days and issued a Hospital Exercise Challenge. Mckenna "clearly" missed me while I was in the Hole, but she did manage to role over while I was there.

March- After being released from the hospital I hit the exercise really hard! I'm still convinced that it's the best medicine ever and that doing a little bit of something is better than doing a whole lot of nothing. Mckenna starting getting to that stage where she actually knew who we were and didn't want us to leave and entertained us most of the month with her sitting skills!

April- In April, I took part in a Health Blog Challenge that produced some very different posts than usual like which superpower I would choose and writing a letter to the 16-year-old me. We had a great Easter celebration with family down in Tucson and managed to get in a pretty cute photo shoot with Mckenna. 

May- In May I was inspired to push myself even harder after a motivating conversation with a fellow cyster. Mandi and I celebrated our 2nd wedding anniversary, in Singapore of all places, and Mckenna started walking all over the place...with assistance. 

June- We took our annual family trip to Rocky Point, Mexico where Mckenna amazed us all with her ability to sleep in ANY position. Mandi was trying to get back in the saddle after back-to-back vacations while I was realizing that there will never be a "perfect time" to start a quest into personal responsibility...you just have to do it! I didn't get to spend my first Father's Day at home, but I got to hang with fellow cyster Beth Peters at a great event she organized in Boston.

July- It took 8.5 months, but Mandi finally got the itch again...the itch to actually want to work out! Mckenna started to figure out that she could walk around the house with things other than her walker. It was a pretty chill month for me, but I did encourage people in the CF community to get selfish!!

August- It was back into the Hole for me this month for an 18 day stay. Technically, I went in on July 30th, but most of the visit was in August. Mckenna had a blast riding on the IV poles and "walking" while mommy "sang". The highlight of our month however may have been our first date night since becoming a family of three.

September- Mckenna spent some time in a monkey pit at the beginning of the month, showing us all why you shouldn't eat off our counters in the middle and then wrapped the month up  by doing some laundry. I did some reflection on why my wife can't only be my best friend while Mandi reflected on feeling like a total loser at the gym :)

October- Mandi and I had begun to make date nights "old hat" by this time, which we weren't so sure the service industry appreciated. Mandi was working with Mckenna on developing her vocabulary  and I don't think she has stopped talking since. We had two special birthdays back-to-back with Mandi on the 16th and Mckenna on the 17th. We also debuted a teaser called Living Xtreme: Beyond Cystic Fibrosis which we had been working on for almost two years with The Essential Image Source Foundation and The Cystic Fibrosis Lifestyle Foundation. And then of course, the month would not have been complete without a little bit of trick or treating on Halloween with Mckenna the cupcake! 

November- Even though Mckenna's birthday was in October, we waited a couple of weeks for my in-laws to be in town before we celebrated! Mckenna rocked out on a piano while Mandi reflected on the wisdom literally being torn right out of her head in the form of teeth. We had another successful Outrun CF event, this time on Thanksgiving Day, that saw the most participants ever!!

December- Best part of December was getting Eric and Nancy (my in-laws) back home for good as they lived in China or Singapore during Mandi and my entire relationship. I love both of them so much, and they are a great nana and papi to Mckenna. Speaking of Mckenna, she blew our mind with how observant she is, and made us think twice about what we do or say around her. Christmas was of course a great time with family, snow (we did Polar Express again!!) and presents (Mckenna is very good at opening them). As a bonus, our Aunt Vicki from Kansas City joined us for the festivities this year!!

Most viewed blogs this year:
Enzymes: Its all about the poop
The Start of My Kalydeco Journey
My Cystic Fibrosis Mantra

I want to take this time to thank all of you for taking time out of your busy schedules and checking in on us from time to time. This year, we saw RSBR top 1,000,000 views. It's still mind blowing to me that we have even had 1! I'm so humbled by how many of you continually leave comments of encouragement and support. You've seen our family change in big ways and are always there to lend a few tips and tricks when we need them. 

Again, thank you, thank you thank you from the bottom of my heart. Have a safe and happy New Year and I'll see you guys in 2013.

Love from my family to yours,

Ronnie

Three Fry Challenge

Thankful Thursday: Cookies & Christmas

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Christmas. The fact that God sent his only Son to this earth to save someone like me is totally mind-blowing to me!! I am so thankful that we can celebrate that each year with family time, traditions and gift giving!

I'm thankful for being so blessed. As I looked under our Christmas tree at all the presents and watched my loved ones all around the tree I couldn't help but feel so blessed. That fact that we have each other to be with and be so spoiled with things made me feel like I had more than I ever deserve!!

I'm thankful for cookies. Yup. I said it. Christmas cookies are SO good. I am SO thankful that I got to eat WAY too many of them this year!

Ronnie's List:

I'm thankful for the great time with a bunch of family over the last few days. Presents are awesome, but they pale in comparison to the time spent with family. I love each and everyone of my family members more than they will ever know, and feel so blessed to have each one of them in my life. I'm one lucky dude.

I'm thankful for a talkative daughter. I'm not so sure that I will always feel that way, but for now it's awesome. Mckenna is at that stage where she gives every word the old "college try" and even though many words sound exactly the same, it's still cute as all get out.

I'm thankful for thoughtful gifts. One thing my family is great at is thoughtful gifts. They're always listening throughout the year for what we all really need and not just that latest and greatest gadget (although there were a few of those to play with as well). Most gifts that Mandi and I received for Christmas are going to last a lifetime and that rocks!!

So, what are you thankful for today?

MERRY CHRISTMAS TO ALL, AND TO ALL...CHECK OUT THIS PUPPY!!!

They Are ALWAYS Watching!!

(I posted this on Facebook the other day, but I wanted to make sure that you guys saw this too. Not only do I think it has a good "life lesson", but I'm still amazed at the mind of a 14-month-old.)

Make sure you stick around for the moral of this story...

Mandi and I had an empty case of Gatorade sitting by our back door. By our back door is generally where we put large recyclable items that don't fit in the recycle container. Tonight, Mckenna (our 14-month-old daughter) walked over to the empty case and picked it up by one hand. With the other hand, she pointed at the back door and said "That!". We opened the door. She then proceeded to go out into our backyard with the empty Gatorade case in hand. We followed her. She walked about 60 feet along the back of our house until she got to a gate that leads into our side yard. She stopped at the gate, pointed to it, and said, "That!". We opened the gate. Mckenna then walked another 60 feet along the side of our house, still dragging the empty Gatorade case, until she got to two receptacles - one for trash and one for recyclables. I asked her which one the box went in and she pointed to the blue recycle bin and said, "That!". Mandi picked her up, opened the lid and Mckenna dropped the empty case in the recycle bin.

What's the moral of this story? Our kids are watching our every move. They watch what we eat. They hear what we say. They see how we react. They take in our emotions. They do what we do.

Children mirror their parents. Even at such a young age, the learning for "real life" is taking place.

Children learn what's right and wrong from two sources, and two sources only - the parents, and the teachers that the parents allow in their child's life. Be a good model for your child and choose your teachers, even the non-human kind, wisely.

Thankful Thursday: Polar Express & Headphones

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

Ronnie's List:

I'm thankful for the Polar Express. Today, we head up north to Williams, AZ and then WAY up north to the North Pole courtesy of the Polar Express :) We went last year for the first time when Mckenna was only a couple months old and had a ball. We hope to make it a tradition for our family.

I'm thankful a daughter who seems to have a good time doing pretty much anything. I really have no frame of reference, but Mckenna sure seems like a cool kid. She's down to do anything and usually tries it with a smile on her face. She's just a joy to be around!!

I'm thankful for good headphones. Nothing is more annoying than fidgeting with the headphone jack to make the sound come through just right or having only one ear producing sound. There was a super deal on some headphones on GroupOn a little while back and I capitalized. Glad I did.  

So, what are you thankful for today?

Are you full of ideas?

For the past few months I've been collaborating on some design ideas with a gentleman from the UK, Matt (more info below about him). We started out just throwing different ideas back on forth on what type of products could make the life of someone with Cystic Fibrosis easier. It's been fun coming up with different things, and the cool part is, nothing is too crazy!! Matt is willing to give everything a look. 

I asked him to write up a summary on what AIR is, who he is and what type of people he's looking for. He's opening up the community to include all of you who are interested. Read Matt's write-up below. If you decide to join, drop me a note and I'll look for you :)

..................

What is it?

AIR is a research project looking at how people can be better included in the design and development of medical products. It seems like common sense that people who have to use a medical product would be included, but it's not always the case.

Sometimes, people are included, but only to have opinions on things that have already been designed- other times, people are included but not allowed to have a fundamental say on what a product does; or even whether it fixes the problem that they want to have fixed in the first place!

In other industries, people are included as collaborators- they have the power to change the direction of a project, as they are included from the very beginning. Also, because they are equal partners in the design of the product, the end result is a better fit... it makes sense for the producer who wants to sell the product, and the person who has to use it. This is called Co Design.

However, in order to collaborate- people need to meet up. This can be a problem; what happens if you want to collaboratively design a product with people who aren't allowed to meet up?

AIR is a research project that is tackling this question, by allowing people to participate over the internet. It's a social network, all about developing concepts for medical devices for people who live with Cystic Fibrosis.

I'd like to invite you to take part.

It's open for anyone to join, as long as you're over 18. It's an opportunity for anyone to participate, whether you live with Cystic Fibrosis, or have intimate knowledge of living with someone who has Cystic Fibrosis. If you're someone who is interested in making things, and designing, but does not live with Cystic Fibrosis, then you're welcome too; it takes many people with many skills to help create a great product concept.

You can join and comment on other people's ideas, post your own, or share experiences that you feel strongly about without having an idea for a product... maybe someone else will see your story and be inspired.

Who am I?

My name is Matt (http://www.shu.ac.uk/research/c3ri/people/matthew-dexter), and I'm a design researcher from the UK, at Sheffield Hallam University (http://www.shu.ac.uk/research/c3ri/research-centres/art-and-design-research-centre). I am interested in how people can be included in medical product design. I don't have Cystic Fibrosis, and although I can't ever truly understand what it's like to live with CF, I can see that it's difficult to currently collaborate on making products.

This project isn't linked to industry, and is not for profit. The findings will be published in academic journals and conferences, and used as evidence to demonstrate how valid this method is; with the hope of influencing how medical products are designed more broadly. Although, there could be circumstances where the project receives attention from the press- this is not planned.

Because this social network is available publicly, you can choose to participate anonymously by signing up with a pseudonym, or by signing in with Facebook (or Twitter) and sharing your name. You can participate as much as you like, and at any time of the day. You're not signing up for anything financial (I don't need your credit card details!), and you can choose to stop any time you like without having an impact on any medical care that you currently receive.

I'd love to welcome you to AIR, and I hope this finds you well.


Click here to check us out:  http://airdesignspace.ning.com/

Vest too big and ineffective?

Question: Yet another question. This one is about the vest. They ordered mine while I was pregnant. But now I'm not sure if the fit is right & if it's working as well because of that. It poofs up quite a bit even with the straps pulled as tight as possible. I personally don't feel as if it's doing too much good. Just wondering if it truly does make a difference. 

Response: Yeah, it may be too big. But, I've found that I have to mess with it quite a bit for it to feel "just right". Be sure that you're sitting straight up and that nothing is putting pressure on the vest from any angle. Many people sit back in a chair or on the couch and that lessens the effectiveness. Mess with the shoulder straps, the clip straps, everything.

Be sure to mess with the pressure as well as the frequency. It should always be going up, or down, but never stay the same. You can find some good recommendations on CysticLife.org as far as exact settings go. And finally, actively do you're vest. Don't sit there mindlessly on the computer with a neb in your mouth taking shallow breaths repeatedly at the same rate (which I can be very guilty of). Breathe in deep, exhale fast. Breathe in slow, exhale slow. Huff cough. Take time to really cough your brains out.

There is certainly nothing magical about a vest. If we treat it as a piece of clothing that happens to shake, we'll get nothing out of it. We need to treat it as a workout that requires participation.

Quit Something on Thursday

We had a phenomenal guest speaker yesterday at church. He's a man by the name of Bob Goff. His book, Love Does, just hit the NYTimes Best Sellers List. He is a Christian man with a heart for doing God's will in his life. He is a lawyer and has felt like his purpose in life is justice, and specifically justice for children. He "invited himself" to start trying cases in Uganda (of all places). He is a TOTAL loon! And I say that in the most endearing way! He was possibly one of the best speakers I've ever heard...ever...because he's just so excitable. He's all over the place and animated. He was entertaining, but the root of his message was put in such a unique way that it really hit home. If our church posts his talk online, I'll post it. But in the meantime, I wanted to share something I learned...it was the smallest little section of his talk and by no means the meat and potatoes, but I really loved it.

Quit something on Thursday.

That was one little piece of advice in the midst of his whole talk, but is resonated with me.

"I quit something every Thursday," he said with excitement and a chuckle.

This initially sounds a little silly if you didn't hear the context. He was talking about how we are all "hoarders" with commitments in our lives. We just pack them so full that none of us have the time to do what we were really made to do. We all do a lot that we are just ok or even good at, but they're not what we were created to do. We commit and commit and commit to things to be nice. But then when something arises that is actually aligned with what God wants us to do, we say no because we say we have no time for it...and that's true, we don't! But by our own doing. We are all stressed. We all fill our desks, our social calendars, our lives way too full. So his advice, "quit something." Is he a total loser who does nothing because he just quits everything? Not at all. Hearing his story makes me wonder how in the world he has lived long enough to accomplish all that he has. I mean, every 60 days the dude flies to Uganda. He's a lawyer. He runs a non profit. He has freed hundreds of wrongfully imprisoned youth from the jails in Uganda. He's the Consul for Uganda to the US. He is accomplished and busy. He just commits to things that are actually appropriate for him to be doing based on God's will for his life.

EPIC!

I can't tell you how busy we are. We agree to this, that and the other thing all the time that we don't want to do, that we are only mildly good at, and that just stresses us out. Why? I have no clue! Ha. It was so funny to hear him put it so simply. Obviously there are times when I just can't quit something. Most the time I can't get an assignment at work and say, "Nope. Not doing it. Not gonna happen." But I can definitely not agree to go to 10 Christmas parties, cookie exchanges, ugly sweater parties, etc....although I do love me some cookies!!

We all have such limited time on this earth to do what we are really meant to do. Life is so fleeting. Days are too short. Years too limited. Hearing Bob Goff so simply say, "quit," was eye opening. So hey, who wants to quit some stuff on Thursday with me?

Thankful Thursday: Blankets & Costco

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for blankets and covers. It's been getting cold at night and there is nothing better than being able to snuggle under a blanket or under the covers in bed. Some people aren't as fortunate and they're just cold on cold nights. We are so blessed to be able to warm up.

I'm thankful for cable. Ronnie and I love to sit at night and watch our favorite shows together. We usually can sneak in 1-2 a night. I am so thankful that we are able to have TV and watch shows together!

I'm thankful for ice cream. I had ice cream last night, and holy moly do I love ice cream!!

Ronnie's List:

I'm thankful for Costco. Mckenna and I go there at least once a week for a daddy date. We stroll the aisles, eat samples and usually snack on grapes. Her favorite part of the date though is getting the receipt from the cashier and handing it to the guy or gal at the exit. They always draw her a smiley face and she gets a kick out of it!

I'm thankful for technology. We're testing out a new feature that we'll be bringing to CysticLife in the near future, and I'm very excited about it. I won't reveal what it is quite yet, but I'll tell you this, people are going to dig it!! It will allow us to get to know each other even better and will take the social part of CysticLife.org to a whole new level!

I'm thankful for being ahead of the shopping curve. I'll admit, I went a little cuckoo with the Christmas shopping this year. Not that I went overboard, but that I was already shopping, in March. That's right, March. I will say, it's nice to have 75% of the Christmas shopping done before the mad rush begins.

So, what are you thankful for today?

Love those "teefers"

The Best Treatment for Cystic Fibrosis

I often get asked about the best treatment I use or do when it comes to managing (or as I like to call it, "kicking the crap out of") Cystic Fibrosis. This is probably one of the easiest questions that I get asked. The best treatment for cystic fibrosis is undoubtedly, unequivocally, no doubt about it... the one that you'll actually do and do consistently.

That's the real struggle isn't it? We all know that treatments work. Anyone who says to me that they consistently do treatments and it doesn't seem to help, generally fall into one of two different camps - They've either waited too long to decide to do treatments consistently or they have a hard time telling the truth. Is there somebody out there who has tried every different treatment option available, given it all that they have and still doesn't feel any positive effects from treatments? I'm sure there is. But I'm also sure that that person isn't you and that person isn't me.

Growing up I was good at doing the limited treatment options available to me, because my mom was good at making sure I did them. It wasn't an option in my house to miss a treatment and when I did, I suffered. No, usually not health wise, but, "what-I-wanted-to-do" wise. If I decided that a treatment wasn't going to happen a particular morning or a particular night, my parents then decided what wasn't going to happen for me later that day or the next. That could mean no hanging out with friends, no football practice, or no leaving my room unless it was for school. I'll tell you what, because they were consistent and because what they said they would do, I rarely missed a treatment!

Now, did I nail the doing all my treatment thing when I moved out of my parent's house? Nope. I nailed it about half the time. As a result, I lived about half the quality of life that I would have had I taken care of myself consistently. It wasn't until people came up to say goodbye to me in my ICU room in 2009 that I finally "woke up". The last thing I want for my cysters and fibros out there is that!

So, to my friends out there with cystic fibrosis, stop thinking about it and just do the darn thing! If that darn thing isn't working for you then find another darn thing that will. It may take some effort and commitment on your part but if you're serious about either staying or getting healthy, you can make it happen.

To the parents out there, don't allow your children the option of not doing their treatments. Sure, they can pick what to do, when to do, how to do, or where to do, but they should have no control over the to do or not to do! Follow that? And another thing, start immediately! Don't wait to implement this groundbreaking strategy until they are (fill in the blank) years old. Adherence to treatments starts from the day they are born on and so does non-adherence to treatments.

What treatment option have you found works best for you "kicking the crap out of" Cystic Fibrosis?

Mckenna Monday: Life is Awesome

It's been awhile since Mckenna has posted an update about her little life, so I decided it was about time.

Mckenna, can you tell us about your life lately?

Life is awesome. The weather finally has cooled off, so I get to play outside at any point in the day. Mommy and Dada actually just open up the back door for me and let me come and go as I please sometimes. Our backyard has a wall around it, so I can't go too far, but I can play in the grass and I have special toys that have to stay outside, and I play with those while I'm out there. I have this cool hand rake thing that I can use to comb the grass, and a basket to hold my toys that I like to pretend is a purse. Also there are these things that have fallen from our trees lately, and I like to crunch them in my hands.

I am starting to be able to talk to Mommy and Dada a lot! I know lots of words and they come in handy because when I say them, people know what I'm thinking and meaning. I say hi to people and bye to people with a wave and the words. I have gotten really good at it because I go to the gym play area every day, but instead of playing, I like to stand at the gate and wave at everyone coming and going. They call me "the greeter"...whatever that means. I also have found a word that works great, it's "that". I say that and point at things I want to know what they're called, want to have, you name it. My parents have trouble figuring out what I'm talking about, but they try hard to guess. Not only do I use my words, but I sometimes tell them with my hands too. I tell them I want milk with my hands (usually when I'm sleepy and ready for bed), and that I want more (which I also use when I'm hungry and want to eat), oh and I tell them that I'm all done (but that I say with words too).

Oh yeah, and I just figured out a cool new thing to do in the tub. If I put my face in the water and blow, I make little "blub blub" sounds and these things my mom calls bubbles appear. I love doing it, but I get a little scared. I lean really close to the water, but then I get nervous because sometimes I forget to blow and instead breathe in and that's not fun. I cough and cough and cough! But when I really pay attention I do it right and I love it!

My Dada and I go on special trips he calls Daddy Dates. We go to fun places while Mommy works. My favorite fun date is this place called Costco. They have tons of fun things to look at and Dada gets snacks for me as we walk. They have yummy snacks. I love them all. Sometimes Dada doesn't even like the snack, but I do because I'm not picky. 

Oh and I started spending time at this place I kind of remember, but it's been awhile since I've been there. It's called Nana and Papi's. I guess it's where my Nana and Papi live because I helped my Nana unpack a bunch of suitcases, so it looks like they'll at least be there for a long time. I love being at Nana and Papi's. Papi takes me on walks just the two of us to explore. He also lets me get on this BIG table. It's covered with this soft fabric and has all these balls that I get to crawl around and put them into pockets. I think they called it pool, but I don't know because I thought the pool was the thing in the backyard that they say, "NO Mckenna!" when I go near. Hm, I'll have to listen when I'm there tomorrow to play with them!

Well I gotta go play with my baby, I think I need to push her in her stroller and feed her a bottle. I love my baby!

Fun at Target

Thankful Thursday: Sign Language & "Church"

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my parents moving back. I think thankful is an understatement. We are so truly blessed to have them back in the same town with us. My parents are not only two of the very best parents in the world, but two of the very best people in the world. To get to spend more time in their company and for Mckenna to get to be around them more is a blessing beyond words. 

I'm thankful for my dad. This one is a bit of a piggy back on the last one, but oh well. My dad has decided to "retire" (although for someone like my dad who is absolutely crazy and for some reason LIKES to work, I'm certain he will be back at it before we know it. Who can retired and still chooses to work? Totally crazy to me, but hey, whatever floats your boat!). My dad is one of those guys who is the picture of a good guy who does well in business because he does the morally right thing, even if it means it's the "wrong thing" in business. He has modeled integrity and a love for people that I try to carry over into my own life. He has been blessed, and instead of feeling entitled and deserving, he just gives more. I am thankful for the man my dad is and the lessons he has taught me.

I'm thankful for sign language. We have taught Mckenna a little sign language and boy does it make things easier. She really only says "all done," "more," and sometimes "milk" (it's a new one we're working on), but holy cow is it nice. I am thinking we need to teach her even more! It helps keep frustration at bay for everyone. She is a good little talker already and says a lot of words and expresses herself pretty well, but when she doesn't know a word for something and all we get is "that" with a point...over and over and over and over again with more frustration each time, a quiet little sign would be nice! Ha!

Ronnie's List:

I'm thankful for a wife who is never afraid to challenge me. Whether it's related to our faith, our family, our work or our hobbies - Mandi has never been afraid to say what she feels is right, even if it's something I don't necessarily agree with at first. Notice that I said at first, since I generally come around to her way of thinking :)

I'm thankful for new routines. I've started a new weight lifting routine at the gym and so far, so good. It's actually less exercises than I'm used to, but it is taking more energy because of the weight and reps required. Hopefully I'll start to see some changes in a few weeks, because I sure feel them right now!

I'm thankful for additional opportunities to "church". When I say church, I'm simply referring to hanging out with others that are Jesus freaks like me. Our church (the physical one) offers a myriad of ways to "do church" outside of just showing up on Sunday and sitting in some chairs. In fact, we get to do church every Thursday night with a small group of young families and really enjoy the time we get to spend with them.

So, what are you thankful for today?

Question from Reader: Relationship Roles and Boundaries

Question: 

Hi Ronnie! I didn't know where to ask this question and thought it would be one to hear your (and other CFer's) thoughts on! 

As we all know, having CF is not just an illness or an excuse to eat whatever we want, but also a responsibility. This responsibility is ours and our families burden and requires a lot of support. I'm having trouble with how much this responsibility spills onto other. Like friends, and let's be honest, mostly BOYfriends. I don't feel it's okay to place such a burden on someone you've just met, so I normally wait a while. But since being at college it's hard to find the balance between what I tell them (him) and what I don't. When it comes down to it, if you're spending a lot of time with me you're spending a lot of time with me at the doctor, doing my therapies and reminding me to take my enzymes. I'm wondering how you find the balance between what they should know/do for you/ worry about and how to stop it if you think they're over stepping? 

Answer:

Here's my rule-of-thumb: I only hide stuff I am embarrassed about. Since I've never been embarrassed about CF, I was always very open about it with anyone I thought I would spend more than a few days with.

As far as other people, "loving" or accepting this life, I've been there. What I always said to myself was "If I really loved them, I wouldn't bring them into this life with me". I mean, I love and embrace CF, but that doesn't mean they have to.

That changed when I met me wife. She told me that she fell in-love with me BECAUSE of CF not in spite of it. She's convinced it played a huge role in shaping me into the man that she fell in-love with. Frankly, I can't disagree with her on that.

To answer your questions...

1.  What should they know? If it's a serious relationship, everything. Not telling someone we care about everything about something that's such an integral part of our lives would be akin to lying. Just think about it this way, if the shoe were on the other foot, would you want him to leave anything out?

2.  What do I want someone who I'm in a relationship to do for me? Well, the answer might depend on wether you're a guy or a girl, but I know for me, I don't mind being "taken care of". Maybe my mom did too good of a job with me growing up or something, because I don't mind at all when my wife steps up to the plate and does "health stuff" for me. Mandi is great about putting my health #1 and reminding me that they need me to be healthy in order to best serve my family.

3.  We will never be in a place in which we're able to control what anybody else worries about. Mandi may say she's not worried about my health or about the future, but how do I really know? Here's what I do know however, the only way I can control any amount of worry is by showing her that I'm doing anything and everything to put myself in the best position to succeed with my health.

4.  How do we tell loved ones they're overstepping their role? As honestly, lovingly and straight-forward as possible :) I've found that with any sort of communication in a relationship that with those three things guiding your words, you can't go wrong!

Hope this helps a bit.

Recharged.

There are some times that I know I need to get recharged.

The need to be recharged is an obvious one - it feels like I'm running on fumes. I'm constantly tired and actually looking forward to putting my head on the pillow (very rare for me as I like "doing" rather than sleeping). My body starts to feel heavier. My legs feel like they are walking through sludge the whole day. My mind feels foggy. My brain feels fried.

So what's needed at a time like this? It's simple really...

SLEEP!

I started to feel very run down this past weekend. I wasn't all that eager to get to the gym and everything felt like it required more effort. Multiple times throughout the day I snuck in an espresso shot (or two) to try and give myself a little pick-me-up. I was running around quite a bit, but it felt more like sleep walking.

Now I'm a pretty scheduled guy. If you asked others, they'd probably say that I'm very scheduled. I wake up at the same time everyday (5:45am) and I go to sleep at the same time every night (9:30pm). Well, I lay in bed at 9:30pm. Actually falling asleep usually happens by 10:30pm. I eat breakfast, lunch and dinner at the same time every day but Sunday. I email at the same time every day. I do social networking and web surfing during selected times. Anyway, you get the drift.

The only "flexible" part of my schedule is bed time. If I have family in town, want to hang with Mandi longer or I stay up to catch a certain game, my bed time gets bumped back. Yet, my wake-up time stays the same. (A baby tends to do that to you).

So, in the interest of keeping with my strategy of controlling what I can control, I did the only thing I could do in this situation. I went to bed earlier. I know, genius, right?

The last two nights my head has hit the pillow at 8:30pm instead of 9:30pm and I'll tell you what - I can feel the difference. I can feel the difference from when I first wake up, and the feeling stays with me for most of the day.

So here's to getting an additional hour of sleep while I can. I hoping a couple more nights of this will get my battery back in the "green" zone :)

Big Week. Big Changes!

This week is a week I've been waiting for ever since I graduated college and moved to AZ.

My parents moved to AZ while I was in college. My brother and I loved AZ so much that we both moved out here when we finished college (he moved out here 2 years before I did). But before the time I could get here, my parents had moved to Asia - first Shanghai and then Singapore. It was such a bummer. I had so looked forward to my whole family being in one spot again, and I was bummed I had missed out on the fun (when my brother and parents were here together). While my parents were gone, my brother got married, Ronnie and I got married, and we had Mckenna. Of course my parents came for visits, but I had always dreamed of the day when we would all be living in the same spot again.

Well that day is here!! My dad has "retired"....which is in quotes because if he weren't crazy, he'd be done working for good, but he is crazy, and therefore, I give him 3-4 months before he can't help himself and is back at it either through consulting or something full time. Anywhoo, he is "retired"and so they head back to Arizona on WEDNESDAY! Yup, TWO DAYS FROM NOW!! I could not be more excited. My parents are such a joy to be around, so the more time we can have together the better. I envision family runs, family dinners, family hikes, family activities, family chore days, you name it. I cannot wait to be able to say, "we don't have anything going on today, let's head up to see my folks." Or to get a call that says, "hey we are headed out to dinner in tempe, want to meet us there?" AH! Just typing the words makes me giddy.

Certainly it raises all new sorts of dynamics. We haven't all lived in one place as 3 separate families before. So how often and in what capacity we see each other is still a bit up in the air. My parents live 40 minutes away, so that will spare all 3 families from pop overs (well, except Josh and Chrissy and Ronnie and I who pop over to each others' houses since we live in the same neighborhood), but none of us will be popping over to mom and dad's...which I'm pretty sure they prefer! Ha! I am just excited to see what our new relationships look like and the great time we will be able to spend together!

The last HUGE plus in my mind - MCKENNA! No, I'm not talking about having built-in babysitters! I am of the opinion that they have raised their kids and them moving back isn't a time to raise mine! However, I am so excited that Mckenna gets to have her Nana and Papi close by. I think it will develop a different kind of relationship. She will spend more time with them just her and them. They're go on adventures. They'll have sleep overs. All of those times together without mom and dad there, I think, create a stronger bond. Am I looking forward to a couple of nights with Mckenna gone and getting to sleep in or a couple of days to ourselves? Sure. But I am mainly just excited that she will have her own relationship with her Nani and Papi, apart from mom and dad.

Here's to a big week! And here's to a great man who has worked hard, succeeded, and gets to take as long of a hiatus as he wants from the work world! Congrats, Dad! We are really proud of you.

Shoo Fly!!!

Thankful Thursday: Google & Granola

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a loving baby. Mckenna isn't a snuggler, for the most part. She's a mover and a shaker. But she is a little lover. She picks up her baby and hugs and kisses her. She plants one on us at random times during the day. She rubs her dad's arm so gently as she whispers, "da da" when she wakes him up in the morning. I love that she's a lover. I hope she stays that way!!

I'm thankful for Google. Anyone who knows me knows I am a googling queen. When we did IVF with Mckenna, I googled EVERYTHING. When I was pregnant, I googled everything! When we look for good recipes, I google. When I have a strange symptom or ache or pain, I google. When Mckenna has a problem, google is there. When Mckenna had tummy issues while nursing, I actually found the issue, before the lactation consultant. I LOVE GOOGLE. That said, most would tell you I need to lay off the Google reading because half the time a headache looks like a brain tumor on Google :)

I'm thankful for our core class. Our core class is awesome. It has transformed our stomachs in just a few months time. I certainly don't have abs like a body building ninja, but with some more time, maybe I'll get there with our core class - HA! A girl can dream, right?

Ronnie's List:

I'm thankful for a bright and shiny sun! Here it is late November, and the high here in Chandler today is 79 degrees. There's not a cloud in the sky and no wind of note. Running errands is a joy in this weather and exercise is absolutely perfect. To be honest, I don't know why people live anywhere that there's snow (Spoken like a guy who has only lived in Arizona :) ).

I'm thankful for granola. I recently added a granola parfait to my nutrition plan and I love it! I put 1/2 cup of Quaker Natural Granola on top of 1 container of Yoplait yogurt. It tastes super yummy and it provides just the right balance of satisfied but not stuffed.

I'm thankful for additional computer monitors. I've been using a small TV that I use as a second monitor while working on my laptop and it has done wonders. I feel much more efficient and it seems like I'm able to work faster. It could also all be in my head!

So, what are you thankful for today?

My Nutrition Plan

Many people have e-mailed and asked about my nutrition plan and what exactly it is that I eat, so I thought it would be a good idea to write it out in a blog so others could take a look. I just finished this new nutrition plan (since I'm now focusing on lean muscle building) so I'll have to let you guys know what I think about it in a month or so!

You'll see that it is split up into two different plans - weight lifting days and cardio days. I will have 4 weight lifting days a week, 2 cardio days a week and one rest day. They don't have to be the same day every week, but whichever day I'm on (weight, cardio or rest) will dictate what I'm eating that day.

Note: This is not intended to replace any nutrition plan that your CF dietician has prescribed to you. I've never had an issue with weight gain, and therefore, can adjust my diet based on how I feel/look/trying to accomplish. For peeps with CF that need to gain weight, these plans will not be the best, especially the cardio days. However, you can modify these plans to work for you, and if you'd like some help in doing so, please let me know!

If you have any questions, please let me know!

_____

Cardio Days

Breakfast 1 @6:15am

1/2 cup Quaker Natural Granola
1 Yoplait Light Yogurt
1 Whole Egg
2 Egg Whites
2 Flaxseed Oil Pills

Total Calories: 437
Total Grams of Protein: 23
Total Grams of Carbohydrates: 55
Total Grams of Fat: 12

Breakfast 2 @9:00am

1 cup Skim Milk

1 Yoplait Light Yogurt

1 Medium Banana

3/4 cup of Blueberries

2 tbs Dextrose

1/2 tsp Beta-Alanine

Total Calories: 450

Total Grams of Protein: 15

Total Grams of Carbohydrates: 94

Total Grams of Fat: 0

Lunch 1 @11:30am

4oz 93/7 Ground Turkey

1 Multigrain Tortilla

2/3 cup Sante Fe Veggies

4 tbs Salsa

1 scoop CytoSport Whey Protein

2 tbs Dextrose

1/2 tsp Beta-Alanine

Total Calories: 580

Total Grams of Protein: 57

Total Grams of Carbohydrates: 59

Total Grams of Fat: 14

Lunch 2 @2:30pm

4 oz Mahi Mahi

3/4 cup Steamed Broccoli

1/2 cup Cooked Brown Rice

Total Calories: 220

Total Grams of Protein: 23

Total Grams of Carbohydrates: 25

Total Grams of Fat: 2

Dinner @6:00pm

4 oz Chicken Breast

3/4 cup Steamed Broccoli

2 oz Cooked Yam/Sweet Potato 

Total Calories: 214

Total Grams of Protein: 23

Total Grams of Carbohydrates: 23

Total Grams of Fat: 2

Grand Totals for Day

Total Calories: 1901

Total Grams of Protein: 142

Total Grams of Carbohydrates: 257

Total Grams of Fat: 30

Weight Lifting Days

Breakfast 1 @6:15am

1/2 cup Quaker Natural Granola

1 Yoplait Light Yogurt

1 Whole Egg

2 Egg Whites

2 Flaxseed Oil Pills

1 cup Skim Milk

Total Calories: 527

Total Grams of Protein: 31

Total Grams of Carbohydrates: 67

Total Grams of Fat: 12

Breakfast 2 @9:00am

1/3 cup Coach's Oatmeal

3/4 cup of Blueberries

6 tbs Egg Whites

2 scoops Monster Milk

1/2 tsp Beta-Alanine

Total Calories: 640

Total Grams of Protein: 67

Total Grams of Carbohydrates: 64

Total Grams of Fat: 12

Lunch 1 @11:30am

4oz 93/7 Ground Turkey

1 Multigrain Tortilla

4 tbs Salsa

2 scoops Monster Milk

2 tbs Dextrose

1/2 tsp Beta-Alanine

Total Calories: 700

Total Grams of Protein: 75

Total Grams of Carbohydrates: 59

Total Grams of Fat: 20

Lunch 2 @2:30pm

4 oz Mahi Mahi

3/4 cup Steamed Broccoli

1/2 cup Cooked Brown Rice

Total Calories: 220

Total Grams of Protein: 23

Total Grams of Carbohydrates: 25

Total Grams of Fat: 2

Dinner @6:00pm

4 oz Chicken Breast

3/4 cup Steamed Broccoli

2 oz Cooked Yam/Sweet Potato 

Total Calories: 214

Total Grams of Protein: 23

Total Grams of Carbohydrates: 23

Total Grams of Fat: 2

Snack Before Bed

1 cup Skim Milk

1 rounded scoop of Casein Protein

1/2 tsp Beta-Alanine

Total Calories: 220

Total Grams of Protein: 32

Total Grams of Carbohydrates: 19

Total Grams of Fat: 1

Grand Totals for Day

Total Calories: 2606

Total Grams of Protein: 253

Total Grams of Carbohydrates: 278

Total Grams of Fat: 49

**On weight lifting days I will also give myself some cheat calories (up to 400 or so) to indulge on some candy, desserts, etc

Rest Day

My rest day will consist of a mix and match of the two nutrition plan. If I'm happy with my weight gain, I'll eat lighter, if I'm not, I'll eat more

______

So, there you have it! Like I said, I'm just starting this, so we will see how it works out. My goal is to build lean muscle and not pack on fat. I used a similar nutrition plan as the cardio days every day for the past 12 weeks and lost 20 pounds and 8% body fat! Proper nutrition and exercise can work wonders my friends.

My Thoughts Kalydeco

Ran onto this old post I wrote about my thoughts on Kalydeco. Updated it with some current information. Hope you enjoy.

I am sure you are aware of this.  What does the CF population in general think about this?  Does it help you?

The CF community is in one of two camps concerning this: uber excited or feeling that its bitter-sweet.

This particular drug will only work for those in the community that have the G551D mutation. It's estimated that in America, that number stands at somewhere between 2000 - 3000. So, obviously those patients and their families are over the moon right now. There are also many (me included) that are super excited for them and know that this is a potential step forward for the CF community at large.

Then there is a portion of the community that feel happy for "them" but sad for themselves or their kids. Most of this camp has the most common mutation, DF508 (I have two copies). So far, a drug for our specific mutation hasn't yielded great results. We're all hopeful, but I'm not holding my breath for anything ground-breaking for at least 5-10 years.

(Update: The results weren't a slam dunk, but they weren't terrible either. I may have to go with 3-7 years instead :) )

So in short, it was an amazing day for many of my friends and a huge step forward for all in the CF community. I'm pumped over here!!

I guess my view is that they figured out a delivery system for genetic modification, right?  That seems HUGE to me.  This drug, when taken, will correct the genetic mutation in certain cells, yes?

Are there any other drugs that actually correct gene mutations on the market, CF or otherwise?  Just seems like a huge thing to me.

It's big, but we're still a ways away.

The real issue with CF, and ultimately the effectiveness of these drugs, is that there are over 1600 mutations affecting the cell and CFTR in different ways (thankfully not over 1600 different ways, however). This new drug works for those with G551D, because it actually gets the "door" (CFTR) on their cell wall to open up and exchange sodium, potassium, water, etc to a level within "normal range". The key here is that their CFTR is actually on the cell surface to begin with.

The challenge for those of us with the DF508 mutation, is that our CFTR is "stuck" on the nucleus of our cell. They are currently trying to get the CFTR away from the nucleus and to it's proper place on the cell wall. If they can do that, they will in theory be able give this new drug to us as sort of a one-two punch.

I'm not sure whether or not there are other drugs on the market that are similar. This drug doesn't correct the mutation, it's correcting the result of the mutation.

Looks like there are between 2000-3000 WORLDWIDE that can benefit from this drug, not just America.

They have said lately that it will eventually be able to benefit others outside of the G551D mutation, but even then, the majority of people with CF will not see the benefit.

So in short, we're closer than we were yesterday, but not as far as we'd like to be tomorrow.