Thankful Thursday: Cooler Mornings & Rules

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 cinnamon crunch bagels from Paradise Bakery. They're so delicious! I could eat one a day...forever.

I'm thankful for cooler mornings. It's starting to be "chilly" in the mornings (in the high 60s, low 70s) and it makes for some beautiful runs!

I'm thankful for my parents being close. My parents are a HUGE help when it comes to watching Mckenna, and even more, they make for great company a couple times a week when Mckenna and I go swimming at their house. It is so nice when your parents go from just parents to friends!

Ronnie's List:

I'm thankful for a slight change in weather. It's started to cool down just a tad at night (and early) here in the desert. I love it for the obvious reasons, but also for maybe not so obvious reasons. I LOVE to see my girls in sweatshirts. They both look so cute and wear them well :)

I'm thankful for a daddy's girl. Mckenna isn't a daddy's girl all of the time, but when she is, I sure do love it. She pretty much insists on me putting her down at night and I'm really thankful for the snuggle time I get to have with her.

I'm thankful for rules. Life's easier and better with rules. Rules take the thought and emotion out of decisions that could become messy if we think about it or use our emotions. And with that said, I'm thankful for rule number one - God is good and He is good all of the time. 

What about you? What are you thankful for today?

The First Time Cystic Fibrosis Was Real to Me

**I recently stumbled upon this post written by Mandi way back in 2009. Gives some of you new readers a good glimpse into the beginning of our relationship and how awesome Mandi is for sticking around!!**

Ronnie's carefree attitude always makes Cystic Fibrosis feel so easy; so manageable. Sure he has his good days and bad days, but for the most part CF doesn't play much of a role in any given day. However, I have come to learn that the CF Ronnie portrays and the CF Ronnie has are two very different things.

After dating for about 6 months, Ronnie and I went to China together to visit my parents. In China, he experienced the perfect storm of a chest cold, polluted air, cigarette smoke galore, hemoptysis, and one long flight back to the US, but I didn't realized just how bad off he really was. I knew he didn't feel well on our flight home. In fact, I spent the entire 12 hour flight watching him as he fell in and out of sleep and consciousness. I'd watch his chest for movement and nudge him if it looked like he was "gasping" for air more than he normally does when he's asleep (anyone else breath like that? It almost sounds like a slow, drawn out bull frog croak). Still I wasn't nervous. He'd give me a reassuring smile here and there, crack a joke or two, and let me know he'd be fine.

We got him back into the country and into the emergency room. We sat there for hours. Ronnie's sats were low enough that the nurses seemed quite alarmed, so they put Ronnie on oxygen, and kept upping the number of liters, from 2 to 4 to 8. Ronnie didn't look like he felt the greatest, but still he gave me a reassuring smile, cracked a joke or two, and continued to tell me he was fine. Around 3 am, he told me to go get some sleep. "I'm just waiting for a room," he said. "Go sleep and I'll be all set in the morning when you get up." So I did.

When I got to the hospital the next morning around 7, I found him in ICU. He was sound asleep, hooked to all sorts of machines making all sorts of noises. The most alarming of all, however, was the bipap. I later found out that they were unable to keep his sats up with oxygen alone, so they had him on the bipap to attempt to get more oxygen into his body. I sat there just watching him. There was no smile for reassurance that I could see through the bipap mask, no jokes, no words of encouragement, or words at all. It was the first time I'd seen him truly sick. The first time he just didn't feel well enough to bring light to the situation. It was the first time I saw that CF could change the game within a split second. It made me realize how much I don't know about CF. It made me understand that it's a very, very serious illness.

That being said, it also made me realize how much of a fighter Ronnie is. Uncomfortable, in pain, uncertain: He just kept on. And as each day passed, he just kept fighting and kept improving. It wasn't long before his reassuring smile was back, his jokes started flowing, and his encouraging words soothed my worried mind. So I guess the best part about the first time CF was real to me, was that I realized no matter how much CF can do, Ronnie will always do more.

Weekend Recap: Planes, Mountains, and Softball Fields

This weekend was relatively uneventful, but the weather was great (well, better than 110) so we spent time outside and enjoyed time together. Here are some pictures and videos to sum up the weekend.

In the mornings, from about 6:30 to 7:30AM, Mckenna and I go to get me coffee. We take it to a canal near our house, and we sit and watch airplanes take off and land at the tiny airport by our house. We also look for fish in the canal and clap for runners and bikers exercising on the canal. It's a great way to get some fresh air and enjoy each other.

This is what it looks and sounds like for the full time we are there...random conversation and a lot of wiggling:




On Saturday afternoon I picked up my parents from the airport and brought them to their house. Since I was up there, I spent the afternoon sans Ronnie and Mckenna and relaxed by the pool after a nice run up the mountain by their house. Can't beat the view from up there!

Ronnie plays in a church softball league on Saturday evening. So Mckenna enjoys her dinner watching the men play softball and then we hurry home to get ready for bed. It is pretty cute to watch her watch her daddy with excitement:

Those were the highlights. We spent time with neighbors on Friday night, but we didn't take any photos. Mckenna LOVES to spend time with their two girls (4 and 2) and we enjoy their company. Saturday was summed up in pictures. And Sunday? Just went to church and after naptime Mckenna and I went swimming up at my parents. We are pretty excited for fall to be here and cooler weather to make it's way to Arizona. I cannot wait to be outside more and more. 

Thankful Thursday: God's Plan & Espresso

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 solid friendships. Lately I have felt really blessed by the incredible friendships we have. Friends who are there through thick and thin. Friends who are always there to listen, share laughs, and even friends that are willing to move furniture for us ;-) I couldn't feel more blessed by the time and advice I get from friends.

I'm thankful for God's plan...even when it's different from mine. I have learned a lot in the last year about God's plan in my life...and just how not in control I am of the bigger picture. Sure I get to pick the color of my car and what I wear to the gym, but any of the bigger life circumstances I feel good about them being in His hands.

I'm thankful for running buddies. Has this one been on my list more than once already? I'm pretty sure I've used it once or twice (but I'm too lazy check right now). I run Sunday, Monday, Wednesday, and Friday with a friend who's grown from an acquaintance to an incredible friendship in the last two years. Running together 4 days a week has only strengthened that bond and is the best way to start my days. It makes running more enjoyable. I run better. And I'm building a lasting friendship...All at the same time. Jackpot!

Ronnie's List:

I'm thankful for a change in our daily routine. For quite some time, I've been taking Mckenna in the mornings while Mandi worked, and we flip-flopped that arraignment in the afternoon. I like this new way for a couple reasons, but one of the biggest is that there is just simply more to do with Mckenna in the afternoon when compared to the morning. We've been going on all kinds of fun adventures lately.

I'm thankful for such a positive reaction to the film Living Xtreme: Beyond Cystic Fibrosis. The whole LX team worked really hard on this film over the past couple of years and we're just thankful that the work is paying off. We of course didn't want to produce something that people didn't like and didn't feel was inspiring.

I'm thankful for stove top espresso. I've been making stove top espresso to start each day, and there's nothing like that first shot before 5am :) I think it sets the tone for the rest of the day!!

What about you? What are you thankful for today?

The Lucky Seven: Intensity Class

I know Mandi and I have mentioned this before, but we do a class at our gym called Intensity every Monday, Wednesday and Friday (and sometimes more if we feel like being mean to ourselves). The class is, well, INTENSE. It is 45 minutes of trying not to barf and doing a variety of lifts, jumps, squats, swings, ups, downs and everything in between. I absolutely love it, here's why:

1. Sweat - Whenever I sweat, it feels like I'm working hard. In this class, I'm drenched with sweat within the first 10 minutes and I drip sweat like a madman for the full 45. There are times when I can actually wring sweat from my shirt.

2. Coaching - There is a personal trainer who runs the class and comes up with a different set of moves each time. He's also there to correct improper form and to motivate you when it feels like you can't push any longer.

3. Variety - Like I said above, the class is always different. It's pretty much impossible to ever get sick of it. Only thing I could get sick of is working so hard!

4. Partner - Having Mandi there with me is awesome. Not only does she motivate me by kicking my butt every class, but she looks super hot doing it. Seriously, you should see her in that class. Rarely is the prettiest girl the most fit one also...and she's my wife! #winning

5. Gym friends - We don't have any actual friends in the class, but we have plenty of gym friends in the class. It's like we're all part of the same team when we see each other in other parts of the gym or outside of the gym in the community.

6. Benefits - I of course like the benefits of kicking my butt. I always have more energy when I work out consistently and I usually sleep better too. My lungs remain clearer longer and I have more capacity when I take deep breaths. And I can tell you one thing, that class forces me to take MANY deep breaths!

7. The End - I like the end of the class for a handful reasons: 1) It's the end of the class 2) I no longer have to work to keep my food down 3) I can catch my breath 4) I can see results 5) I feel a sense of accomplishment 6) Lunch time is coming up next! 7) Recovery

If you're not active in something that gives you a sense of accomplishment and pushes you beyond what you think you can handle, I would highly encourage you to find a class at your local gym. If you have the commitment level and motivation to push yourself that hard, then go for it! I know as for me, I would never, ever push myself as hard as I do on my own, as I do in Intensity.

The (Not So) Terrible Twos

Ahh, "terrible twos." We are creeping up on them. You hear it all the time, but you don't know what to expect. I guess I pictured the scene from The Exorcist where the kid's head is spinning around...and thankfully, we haven't had that unfold in our house (in all honestly, if that did actually happen, I may lock her in a home somewhere because I wouldn't be able to sleep at night). This stage is an interesting, awesome one. It's my favorite yet, and for a former baby person, that's a big statement. Mckenna is becoming more and more independent, which is a big curse but a bigger blessing.

We have all the lovely tantrums that make you so frustrated you want to jump in your car and return in 16 years. Sometimes these tantrums are over something so small, I actually have to keep myself from giggling...which as you can guess, if Mckenna picks up on it, only makes her more angry. We had a 10-minute standoff this morning on the potty because she (for the third time in an hour) said she had to go potty, but as soon as she sat down, she was "all done." She just wanted to take off her own shorts and diaper, and the potty was doing the trick. Well not in my house, sister. So we sat (well I sat, she was held in a sitting position on the john) for 10-minutes while she begged to be all done. I'm not sure who was being more stubborn, me or her, but regardless, it was frustrating. On Friday, she was in her room 3 times before breakfast for various offenses. When she wakes up from her nap, you hear, "knock knock, hello? Mommy, where are you?" in whines over the monitor, but when you excitedly greet her you get a, "bye bye!" in return - followed by 10 minutes of refusing to let you take her out of bed, but whining when you actually say "bye bye" back and walk out of the room. She is becoming her own little person and wants us to know it.

But as frustrating as those times are, I am so thankful that she is becoming expressing who she is, and I'm really excited by the person she is becoming. To say that Mckenna has quite the personality is an understatement. She is playful, excitable, passionate and goofy. She is outgoing, friendly, and engaging. She is smart and athletic. She is loving and compassionate. She is confident. She is bold. She seems to be well-liked wherever she is, by both other kids and by adults (how's that for the most "mom" thought of them all!) She has all the characteristics to be incredibly successful one day...or major trouble in high school ;-) I am so excited to see more and more of who God has made her and who we get to be the parents of. She has all the right ingredients and my prayer is that we can put them all together to create a woman that will make a major impact in this world.

I love that she now speaks in (toddler) sentences so I can begin to see how her brain is working. I love that she tells little crying kids "otay boy" or "otay girl" with a look of compassion on her face. I love that she plans ahead and tells me (after getting in trouble for not listening), "Mckenna listen tomorrow to daddy." (...Ok thanks, that's helpful right now) and that before bed she rattles off the 15 things she wants to do tomorrow..."wake up, Mckenna read book...wake up, Mckenna drink milk...wake up, mckenna gym." I enjoy hearing her predict what she thinks everyone she knows in the universe is doing at that moment...all back, to back, to back (can you tell it drags on?), "Josh working...Chrissy working...Nana home...Papi home...Brock sleeping...Tristan sleeping....Baby Caden sleeping...no Harlow Sad..." and on and on we go. I love that after a fit or crying spell she will inform me, "Mckenna choose happy" (Can you tell we've been drilling happiness as a choice around here? Ha!) I love that she will tell me what to do (albeit, it's rarely effective). Not because I like being bossed around or like that she is being bossy, and certainly not because I like to hear what square inch of floor I'm supposed to sit on or what toy I need to play with, but because I know that if we channel that current bossiness properly, she's just a leader in the making.

We truly are loving this phase, with all of it's ups and downs...so I say, bring on the actual terrible twos!

Thankful Thursday: New Motivation & Dried Mango

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 new motivation. Lately I've been motivated to do more and learn more. I've never been super lazy or just sat around not being driven to do anything, but lately I've been craving growth in my life, and it's been awesome.

I'm thankful for Nordstrom Rack. I bought sneaker at Nordstrom Rack a few weeks back. I have always run in Asics, but I tried running in the shoes (Nikes) and holy cannoli, they feel AWESOME to run in. I'm so thankful for "cheap" sneaks from The Rack and for learning that work (sometimes) better for runs.

I'm thankful for phone calls. I was out of town last weekend and again Wednesday for work. I miss Ronnie and Mckenna while I'm gone, but it is SO nice to be able to get a phone call from Mckenna. She somehow seems SO old when she legit talks to me on the phone. I love it!

Ronnie's List:

I'm thankful for dried mango. Every time I go to Costco, I do my best at not purchasing the large bag of dried mango. Not because I don't love it, but because it's hard for me not to eat the entire bag in one sitting. I've been doing my best portion control with this last bag, but it's still disappearing to fast! 

I'm thankful for sports and fellowship. I recently started playing for my church softball team and it feels good to be active in a sport again. It's been a while since I slapped the leather (in fact, the last time was with another church's softball team) and there is no doubt that I'm a step slower and my reaction time is not what it used to be. It's also amazing how long it takes for my body to recover from games or practices. It's a good pain though, right?

I'm thankful for quite time. My quite time in the morning has been going really great and I absolutely love it. The house is quite. The house is dimly lit. I'm usually the only one breathing in the same room :) There's nothing like peace and quite when you're raising a youngster.

What about you? What are you thankful for today?

Thankful Thursday: "Where are you, Mommy?" & A Recent Connection

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 running buddies. As I blogged about earlier this week, I have been running with a girlfriend and it is one of the best things ever. I have never been so excited to get up and go for a run. Better yet, I got my brother to run with me this morning!! I'm so thankful for quality time spent with friends and family while exercising.

I'm thankful for "where are you." Mckenna makes me laugh by the things she says (sometimes on purpose, sometimes not). My new favorite is when I hear her yelling, "where are you, mommy?" The way she says it warms my heart.

I'm thankful for parents who still love each other. My parents have been married for 30 years, and they still love and enjoy each other. There is no greater blessing than to see my parents so in love after so many years. I'm thankful they have each other.

Ronnie's List:

I'm thankful for a recent connection with a friend from the past. Steve and I have known each other for almost 20 years. We lived together in college and have shared many great memories together. As life moved on, it got in the way, and Steve and I only stayed loosely connected for the past 10 years or so. We knew about all of the BIG things going on in each others life, but didn't take the time to talk about the SMALL stuff. The stuff that holds friendships together. I'm happy to say that we talked about the small stuff today and I'm thankful that we're on our way back to how it used to be. 

I'm thankful for a supportive wife. There isn't much, if anything, that I do in which I don't have the full support of my wife. If she doesn't fully support something that I choose to do, I'm certainly not aware of it :) It's just nice to not have to worry about the person I do life with breathing down my neck and second guessing all of my decisions. I know some marriages live that way - I don't know how they do it.  

I'm thankful for no sugar. I decided that I wasn't going to eat sugar this week (candy or unneeded sweets) to see how it felt. I've got to say, it feels good and I can definitely tell a difference in how I feel and how I look. Not to say I'll never eat candy again (because I will), but it's nice to know I have the will power to do it!

What about you? What are you thankful for today?

Two Important Lessons from My Mother

To say that my mom passed down many lessons to me that carried on throughout my life could be the understatement of the year. I could probably fill an entire book with all of the wisdom that she passed down to me over the years. Little anecdotes and advice that I've drawn from constantly to either get through a certain situation or just draw strength to continue motoring throughout the day. But as I've talked more more about my life with cystic fibrosis, I began to realize two very important lessons that shaped much of my life up until this point.

These two lessons play off each other in perfect harmony. They are:

1.  Not everything bad that happens in my life is a result of having cystic fibrosis.

2.  There are many good things in my life that I may have never experienced if I weren't diagnosed with cystic fibrosis.

Let's look at the first lesson. I don't think it's an overstretch to say we live in a “blame society”. We are always looking for someone else or something else to blame for our set of problems. Whether it's blaming the dog for eating our homework (even though we left it within his reach), blaming our boss for our cruddy job (even though we enter work each day with a chip on our shoulder) or blaming lack of time for not exercising (even though we still get in our 1 to 2 hours of TV a day). It's just so much easier to blame others or some external force for the bad things or bad situations that happen in our lives. It's much tougher to look within, or look into a mirror, and at least partially blame ourselves.

Cystic fibrosis can be the perfect scapegoat. I used to think that there was no way I could ever run any sort of distance because I had cystic fibrosis (even though I had never attempted to train). There are days that I thought I must feel sick because my CF was getting the best of me (even though there was a virus going around at school). I'm sure there were days that I used cystic fibrosis for being the reason that I acted out and didn't have respect for authority (getting to the root of that issue would take years). I'm not so sure I ever verbalized these, or even consciously thought of them, but I wouldn't be surprised if they were at least subconsciously there.

Maybe my mom recognized that. Maybe that's why I vividly remember my mom saying many times, “Cystic fibrosis won't always be the reason that bad things happen. Cystic fibrosis won't always be the reason that you don't get your way. In fact, rarely will cystic fibrosis be the reason. The reason? It's called life and we all are living in the same one."

I'm so thankful that I was able to carry that on to adulthood. There's no doubt that it played an active role in me pursuing to make a positive impact on this world. If I couldn't blame CF, then I was going to use it to motivate me to do good things.

The second lesson plays off this first one perfectly. When I look back I can identify so many things that have happened in my life that would not have happened if I'd never was diagnosed with cystic fibrosis. More importantly, there are tons of people who play a present and active role in my life who I may have not met if it weren't for CF.

My mom would always be quick to remind me when I was a child of this and now as an adult, I can see it clearly. This continues to play out today. I can't count the number of contacts, acquaintances, and friends I have as a result of being a part of the CF community. Diving in and serving the CF community is what I strive to do every single day. I can't imagine myself doing anything else. Would I be doing this without the diagnosis? No way.

The biggest role CF is played in my life is that of a sculptor. I'm convinced now more than ever that cystic fibrosis molded me into the man that I am today. The man that my wife fell in love with. The man that Mckenna calls "daddy". Many out there believe they'd be a different person if they weren't battling CF. I agree, I would be different, and I don't think I would like that different version of me as much. I know that others wouldn't.

And again, to quote my mom, “You can either use CF to hold you back, or to propel you forward.”

I choose the latter. What about you?

A New Addition

Before you get too excited, I should quickly get out of the way that this is not an IVF update ;-)

Instead, I wanted to share one of the most exciting additions to my exercise routine in a long time. As I mentioned last week, I've been upping my miles and running more. I decided to not only add more miles, but to also add a running buddy. I reached out to a girlfriend (Hi, Holly - you may be the only friend of ours that actually reads the blog anyways...so how about a shout out? HA!) to see if she wanted to run yesterday morning with me.

Side note - For any runners out there, you know how this whole thing works. It's enjoyable running with a buddy, but it has to be the right running buddy. They can't be too fast, too slow, too talkative, too mute, too tired, too giddy, too competitive, too complacent, too...well, too "anything". There's always this sweet spot. They have to be similar in their pace, but if either of you are slightly faster it can push you both to be better. Running with a new running buddy for the first time can kind of feel daunting...like a first date in a way. You wonder if you're too "anything" for them. You inevitably think, "gosh, if they're in better shape, am I going to die trying to keep up?"..."Do I wear headphones?"..."Who will be in charge of the GPS and taking charge of the course?"....and the list goes on. Choosing a running buddy is kind of like choosing a roommate. You know what I'm talking about, you can be the best of friends, but terrible roommates.

Anyways, we met at 5:15am by a long canal that stretches through our town. This area is pretty cool in that we have a lot of canals running all over that you can run along...I just never have taken advantage of them in the past. We decided to do a slow 4 miles and see how it was. Well 4 miles and some great conversation later, we both felt great. We ran at a good pace and we both (I think) had fun. I adore Holly as a friend, and now I adore her as a running buddy too. She's not too "anything"...except maybe too awesome, and that I'm ok with!! We even had such a good time yesterday that we are running together again this morning...I guess that means it was a success and we are both fired up. The only hurdle now is trying to keep up with her...because she's a freakin' stud!

This may be one of the best things I've done for my exercise routine in a long time. I am really excited to have someone to run with some mornings. It's a nice change of pace (no pun intended) and it's a great way to spend time with a friend, while getting a work out. If you've never tried working out with a friend, I TOTALLY recommend it. It adds so much enjoyment into the mix. I am so excited for my next run thanks to adding a great running buddy to the equation.

Thankful Thursday: CF Wife Friends & Little Brains

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 time with friends. This week I spent more time with girlfriends than most weeks. It was so great having a little grown up time and catching up with them. I am so thankful to be blessed with such incredible friendships.

I'm thankful for CF wife friends. This piggybacks off of the last one, but I am so thankful for time spent this week with another CF wife friend of mine. There are some things that form bonds off the bat, sharing the bond of being a CF wife is one of them. The fears, the blessings, the sacrifices and the benefits are all shared. There are perspectives on life that can't be shared in the same way with anyone else. We had one of the best conversations I've enjoyed in a long time and I feel so blessed to be able to share life together so openly.

I'm thankful for extra miles. This week I've upped my miles a bit, and I'm thankful for some extra time spent running. It's been a blessing to just get out and listen to music and feel the fresh air in the mornings. I can't wait til it cools off a bit, but for now, I'm just happy to be able to run more to get some extra fresh air.

Ronnie's List:

I'm thankful for little brains. With every day that passes, it seems like Mckenna is using her little brain more and more. You can "see" her problem solve. You can "see" her process the different options in her mind. You can "see" her search her brain for the right word in the right sentence for the right moment. I always knew that I'd like this stage, but I think I like it even more than I had imagined.

I'm thankful for dialogue. Yesterday's blog by Julie started some great dialogue both on the page and my FB page. It's always good to see differing opinions and read explanations as to why someone feels the way that they do. It's also great to see someone open to changing their opinion based on the solid argument and opinion of another.

I'm thankful for trail mix. I'm sure I've been thankful for this before, but I just had to say it again. The trail mix (fruit and nut) that we get from Costco is seriously too good. It's too good because I can't stop myself from eating and the only time I don't have more than I should is when it's not in the house. I'm kind of looking forward to finishing the bag so I no longer have an option...but then again, I'm also kind of sad at the idea :)

When The CFF Gets It Wrong

by Julie Desch and found on her blog "Sick and Happy".

Six months ago, the National Cystic Fibrosis Foundation announced an update of their infection prevention and control policy.  As stated on their website:

• Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
• Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.

As stated by the CEO of the CFF, Robert Beale, the intent of the change of policy was “… we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”

At the risk of incurring the wrath of what most in the CF world regard as a beloved organization run by those with only the best intentions for all of us with CF, I would like to respectfully disagree with Dr. Beale, and the Infection Prevention and Control Committee charged by the CFF to come up with an updated and revised version of the 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.

Don’t get me wrong.  The CFF does an amazing job raising money and awareness in the fight to cure CF.  The millions of dollars raised by over 75 chapters and branch offices of the CFF provide the ongoing gravitational force that has led to a tidal wave of new discoveries and lately, some promising new treatments for a disease that we all love to hate.  There is no doubt that the fight to cure this ghastly disease would be nowhere near the finish line, as it appears to be rapidly approaching now, if it were not for the Cystic Fibrosis Foundation.

Indeed, the Foundation is lauded for birthing the concept of “Venture Philanthropy,” in which non-profit fundraising organizations provide funding for small pharmaceutical companies to develop new drugs for orphan diseases…companies that would otherwise be unable to do the necessary research.  The idea is brilliant, and the proof of concept is none other than Vertex Pharmaceutical, maker of Kalydeco, AKA Blue Lightening, or as I like to call it, The Little Blue Pill That Was The Beginning To The End Of CF As We Know It (I need to work on an acronym).  Bob Beale and his team deserve abundant credit for this.

But, you and I are a big part of the fund raising process.  We fund raise.  We educate others.  We tell our stories.  When we were younger and cuter, they were our pictures on the fund raising literature.  After all, this is about us, right?  Yet here is where the CFF has completely left us out of the equation.  We are SO far out of the equation, in fact, that the concept that we might actually be able to decide for ourselves if we want to risk attending a CFF event has not even been considered–at least not that I can discern.

Instead, the CFF will be introducing at their next annual conference, a 92 item document, listing all of the ways adults and children with CF should be protected from cross infection.  Note that the passive nature “be protected” as opposed to “protect themselves.”  I mean what I say and I say what I mean.  This document covers everything from telling us to avoid construction sites to containing our secretions.  They include the directive to avoid all social contact with each other, to avoid car rides with each other, to not share utensils, to stand no closer than six feet from each other if we are outside, and to please not exercise together (they didn’t say please). The Foundation has no hesitancy telling us what to do.

Generally, I can take this all with a grain of salt and know that they are in fact, simply doing their job, and attempting to educate us about the risks that we face when we come in contact with another person with CF whose lung microbiome is different from ours.  NEWS BREAK: Bugs might mix and match, and we could end up on the wrong side of that equation.  I am well aware of that, and I don’t intend to hug you the next time I see you (I am assuming that you, dear reader, have CFTR “issues” as I do).  But, perhaps there are a few of us out there who didn’t see Grey’s Anatomy, and don’t yet know that we are all co-pariahs and need to avoid each other like the plague.  If so, I’m sure the new edition of the best-selling Infection Control Recommendations for Patients with Cystic Fibrosis will not be for naught.

But when they specifically mandate my behavior, I get pissed.

To read this rest of this blog, please click here. You'll want to read the rest of this!!!

Note from Ronnie: Full disclosure, I love Julie Desch. 

Top Ten Tuesday: Things Learned Through (and Loved) About Running

It's not Monday, but I'm (Mandi) posting anyways because when I posted yesterday I realized the last post before mine was Thursday's...clearly Ronnie needs a little back up.

I have been re-inspired to run the last month. We have been doing our HIIT classes the last 3 months and I have put running on the back burner, but while on vacation I went on a couple long runs by the ocean and fell back in love (does anyone else have a love-hate relationship with running?) I also did that half marathon last week, which drove me to want to step up my running game. I decided this week to increase my miles and enjoy some time with my feet on the pavement. Here are the top ten things I have learned through running and that keep me in love:

10. Practice makes perfect. Very few people can lace up their shoes for the first time and go for a long run. It takes time. While I love things that I'm good at, I also love a challenge and knowing that I can continually get better at something.

9. My body will adapt. I once had a soccer coach tell me that, "your body is unlike any other machine, it will adapt to the stresses you put on it." This has been one of the most monumental statements in my life. I repeat it to myself during long runs. I encourage myself with it when I'm in our class and it feels like I can't do another clean and press or another burpee. I tell it to myself when I don't feel like working out. Because I know that if I push myself I get better, but that the opposite is also true. If I sit around, my body will adapt in the wrong direction. Running has showed me this without fail, every time I step up my running, I can run farther and farther.

8. My brain is more powerful than my body. There are times when my body screams to stop. To walk. To take a shortcut home. But somehow my mind can overpower what my body is telling me. I have to admit, the positive self talk in my head is something I rarely share with people, as it may be some of the most embarrassing mental dialogue of all time. But it is incredible what your body can do when your mind tells it that it will be done. I may or may not think to myself "legs engage" before a big hill. There's a chance I have "raced" the mailman down a stretch of road while trash talking him in my head, "I'm on foot and keeping up...what's up now?!" (Please erase that from your brain). I repeat over and over, "you're not in pain, you're just tired. Being tired isn't a good enough excuse to stop," probably 35 times on any given run. It works every time. #Brainsareawesome.

7. I will never be the best - and that's ok. I know I will never be the best runner on planet earth. For a type-A who's a perfectionist, not being the best at something makes me uneasy. I am driven by success. I like to be the best (yes, I said it...and I know I'm not alone, so no snickers, peanut gallery). But running is one thing I know I will never be the best at. I will never win a race. I will never be the fastest or be able to run the farthest. There's something healthy about being forced to sit in the middle of the pack - and learn to feel comfortable with being average.

6. I am intense. I am certain my husband, brother, and parents all just laughed reading that. This is no secret. I'm pretty sure even my dog knows this about me. But running has taught me just how intense I can be. I can push. I can feel like I'm about to faint and still put one foot in front of the other. In fact, Ronnie refuses to run with me, in part because of my intensity...but also in part because...

5. I can be happy even if I'm not comfortable. No one likes that person during a tough workout. I am that person. I have learned in a big way through running that my feelings don't need to be dictated by how I feel. If I'm uncomfortable, it's healthy to be joyful in the place you currently are. Running had taught me to be comfortable with discomfort. To look around at beautiful surroundings while my body aches. To thank Jesus for two legs that burn. I have tried to let this bleed into other aspects of life. In fact, I know for certain it is learning this lesson through running that allowed me to joke throughout my unmedicated birthing process - the reason I was giggling and smiling between pushes. Through running, discomfort never became an excuse for a bad attitude.

4. People bond over shared interests. Ground-breaking? No. But seriously, how cool is it that two runners passing on the street almost always smile or wave at each other.

3. The best thinking is done alone. Sometimes the world is noisy. We live in a world of constant communication and influence from others. Running allows time alone with me and my thoughts. And my best thinking can be done when I'm alone with my thoughts.

2. I'm competitive with myself. I am a competitor. I like a good competition. I really love competition with myself. I like to better myself. I like to show the me of yesterday what's up. Running has showed me this through and through. It kills me if my run today was slower or shorter than yesterday. I've learned I really can refine myself more through competition with myself verses with others. I can't always be better than others, but I can always be better than I was yesterday.

1. My body is a gift. I have been given all the tools I need to be active. I have been given a machine that will get up and move. We all have our insecurities about our bodies, but when it comes down to it, if I'm capable of getting out and running, I know I need to thank God for what he has blessed me with.

A Love Affair

This weekend Ronnie was out of town for a speaking gig, so Mckenna and I kicked it at home, just two crazy girls living the dream! The weekend was surprisingly smooth. Ronnie and I joke that Mckenna may be built for a single parent. She seems to do better when she's with just one of all us day (vs. how we usually do it, splitting the day in two). Perhaps she just knows that she can get away with less because, at least mom, doesn't have the patience for a day full of shenanigans, but my guess is it speaks to the power of more undivided attention (look out if there's another Sharpe in the future, she may STRUGGLE). Regardless, she does well with a day or two of focused mommy or daddy time. So she was quite the companion this weekend.

On Friday night I put her down and did my usual routine when Ronnie travels: sat on my tush engulfed in the endless vacuum that is the internet. I saw on Facebook a friend posted a music video her friend had made, "based on the blog, 40 days of dating." Being the hopeless romantic that I am, I decided to see what the blog was. I went to it, and I fell in love. The premise is that two friends found themselves single at the same time and decided to try dating, for 40 days. They set rules. And then they started blogging about the journey. It is SO addictive and so fascinating. For those who don't know me personally, I love to psychoanalyze people. Yes, I'm one of those people. Forgive me ;-) I love to read between the lines. I love to figure out what is really driving people. I enjoy watching someone's past manifest in their future. I love it all. The crazy awesome part about this blog, is that they both blog their perspectives, but they don't see what the only one has written (as they both have a scribe). It is the most fascinating look into dating that I've seen. You see how they talk past each other. You get a look into how the other is (over)reacting based on how they think the other feels...but are usually way off the mark about the other's feelings. I read the whole thing. I couldn't stop. It is also cool because they are both artsy types who love creating. They live in NYC. They illustrate the blog. They post creative videos and pictures they've created. It's just a look into two types of people and lives that are so different from my own. I read the whole blog, "cover to cover"...I devoured it.

It got me thinking. What would happen if I brought this experiment into my marriage? No, Ronnie and I aren't dating other people for 40 days (although I'm certain it would add a bit of drama to this otherwise sleepy blog). Instead, I've convinced Ronnie to "date me" for 40 days (even though he hasn't stopped mocking my idea - Ha!). We haven't set all our ground rules yet, so I'm not sure how it will look, but I think it will be fun. As I told Ronnie, "this could be a lame, epic fail, or one of the coolest things we've done for our marriage." We will see how that goes...regardless, Ronnie is quite certain I have lost my marbles, as I've thrown out enough rules to make me maybe the most demanding "date" on earth. HA! We will keep you posted on that front if we have anything of note that stems from it.

Anyways, the point of the post was to tell you to check out the blog...it'll wake you up after your stop here at sleepy town ;-)

Thankful Thursday: Paradise Bakery & New Music

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 two healthy legs. As I posted on Monday, I ran a half marathon on Sunday. There was a man on the bus to the start of the race who I overheard talking. He told the woman next to him that he has done several half marathons, "some in my chair, and some with my cane," he said. I sat there feeling so blessed. I was getting caught up in what time I would get, while this guy was going to do the whole thing with a cane, like the freakin' man! Several times during the race, when I felt my legs dragging or my knee hurting, I stopped and thanked God that I had two healthy legs carrying me.

I'm thankful for my friend at Paradise Bakery. I've switched my coffee drinking alliance from Starbucks to Paradise Bakery for a myriad of reasons. But one big one is the sweet cashier. She is the cheery face I see every morning between 6 and 7. I look forward to hearing her tell me a story from the morning. She gives Mckenna the sweetest smile (and sometimes cookies) if I have Mckenna with me. She works so hard and is so sweet, and I look forward to telling her "don't work too hard today," as I leave. I wait for her laughing response before I walk out the door. I'm so thankful to start my day that way every day.

I'm thankful for my parents. I'm always thankful for them, but I am especially thankful for that offering to watch Mckenna this last weekend for Ronnie and I to have a weekend kid-free. I was blessed to have them raise me, and I'm doubly blessed to have them help us raise Mckenna. She will learn more from those two than I could dream to teach her.

Ronnie's List:

I'm thankful for new music. I've been trying to discover new music/artists in two different genres of music recently and I'm liking what I've been finding. I've been really into country music and Christian rap lately. I've always been into rap, but not Christian rap until recently. As a teen, I thought the beats and lyrics of Christian rappers were pretty corny. Now that I'm older and have moved away from secular rap (got tired of the subject matter and the language used), it's been refreshing to find that Christian rap is really good!!

I'm thankful for cloudy days. At a certain point during the summer in Arizona, it hits a time when you simply cannot plan on doing outdoor activities after a certain time in the morning. Well yesterday, given the overcast day, Mckenna and I were able to hit up the park later than normal and thoroughly enjoyed ourselves.

I'm thankful for text messaging. It's crazy how easy text messaging makes communication among family and friends. It's also awesome to be able to send photos and videos to family members who aren't on FB and want to keep up with Mckenna :) 

It's Good, but It's Not THAT Good

I've heard a lot of different reactions to my blog a few weeks back about the clinical trial I'm currently on which will remain nameless. One particular reaction or thought that I wanted to address goes some like this,

"Oh, that's awesome!! I can't wait until it's available because I hate CF and I hate treatments."

I guess I'll just be the one to put it out there - You can take any med currently being studied in the pipeline, and if approved, it will still not take CF away. Now this can mean different things to different people. Obviously, there will be people who get on the right "miracle" drug and it totally flips their life upside down and they start living as though CF didn't exist. I have a feeling that will be rare.

I think it's safe to say that most of us will still feel some if not all the effects of CF daily, but hopefully, less often and to a lesser degree. Many of us will still have to do treatments if we want to be the best version of ourselves.

Case in point: Today's workout was extremely hard and I was dragging booty the entire class. It was hard to catch my breath. I felt low on energy. I was doing more resting than usual and I was light-headed most of the class.

I thought for a second, "Where are you now _______ (name of study drug)?" You see, just because I've had fantastic results from the drug, or the placebo, doesn't mean that CF, or in most cases, just regular life and human reactions, go bye-bye.

I got to bed later than normal yesterday. I didn't sleep as well. I ran/walked 4 miles yesterday and I'm pretty sure my legs remembered. I ate like a 20 year-old college student this past weekend. I'm sure I could have given better effort during my treatments while in San Diego. I was out of my regular routine for 3 days. I think it just all added up.

Here's my point, no matter what drug comes out next, it won't change the fact that we're going to have to work hard. We're still going to have to make good decisions and treat our bodies with respect. The hope of course is that when we do screw up (as I am king at this) the penalty to pay maybe won't be so steep. Maybe, and Lord willing, the next generation will have no clue what "our CF" feels like. All of this of course is only speculation.

The last thing we can afford to do is wait on a med that may or may not be a "game changer". We all need to keep our nose to the grindstone and kick some CF booty each and everyday. This looks like doing our treatments, living an active lifestyle and putting our health first. If we can do that, there is no doubt that we will be the best version of ourself.

I'll leave you with this quote from the great Larry Bird which I think nicely ties up this blog with a nice ribbon. He said, "I find that the harder I work, the luckier I get."

Couldn't have said it better myself.

Increase from Exercise?

A question that I received lately that I know must be a common thought or question on the minds of others:

Ronnie, I wanted to ask what your pft range is or more specifically how much has it changed with exercise and how long did it (or has it taken) for you to see improvement?

I am currently at 30-35 percent and on 1-2L O2 24/7 I have lost about 10-15 percent over the past 7 years. In that time period the highest I was able to reach was 49.something, well almost 50%. I was hospitalized in June of 2009, my first in an 8 year period somewhere at 45%, however, can't give exact because records are stored since our move. After that hospitalization I cultured b cepacia, treated aggressively in Oct09. It took until August 2011 before cultures were clear. Anyhow, I've just started back at bicycling. I haven't participated in sports for 20 years (last softball season 1993). My main reason for having to quit was major hemoptysis. My husband and I have been in St. Augustine for a year and I truly believe that the salt-air is what keeps my lungs from episodes. 

So...after my last hospitalization in Oct. 2012,I was able to gain the 12% back I had lost in Sept., but it took 3 months. Since my last clinic, I've been riding every other day 30-40 minutes. A total of 9 weeks. So...the big test will be this coming Wed. clinic to see any change. Hoping and praying so...I want to get back to as close to 50% as possible. Lord willing with His help, I will.  Sorry so long and not sure how much you were familiar with my history, so I apologize if I had mentioned any of the details previously.  
Thanks, In Him, Laurie 

ps-if you'd rather not share I understand, just find it hard to find other Cfers that still have their original lungs! And if you did get a transplant, then I didn't catch it in your posts.

Thanks for sharing some background Laurie. (As a side note, Mandi's grammy lives in St. Augustine.)

As far as my PFT history, you can see much of it here: http://runsickboyrun.blogspot.com/2009/03/my-pft-history.html

I have not had a transplant.

It took about 18 months of working out everyday and doing 4 treatment sets a day no matter what for me to see "real" improvement. And by that I mean setting a new baseline and bringing my range closer together instead of further apart. That's continued to improve over the last 4 years.

I also have bouts of hemoptysis and it's one of those things that's always in the back of my mind. However, I'd rather "bleed out" trying to take care of myself, than slowly "commit suicide" by doing nothing (just how I think about it).

Your next PFTs may not show all of the hard work you've put in. The numbers will come, but they usually trail the effort. How are you feeling? Right now, that's what's most important. We always want to be in a position in which we can give our best. If we can't give our best, then we need to do what we need to do to get back into that position (for me, it's often a hospital stay).

Just keep your nose to the grindstone no matter the numbers. Our numbers can't dictate our effort, only we can, and should, do that.

Thanks, Ronnie for your insight and getting back to me. I am with you on not focusing on the numbers. I feel sooooo much better and I am just so grateful that I am able to get back into riding. I've had more junk, as of late, but it makes me wonder if the cycling is finally causing it to "rise". Which then I say...Good riddance!! Just to also add that the years from 2001 to 2008, I opted for "natural remedies" that kept my lungs clear or helped me through a particular illness. 

I also need to start in again with chiropractic care, it has always helped me to not be so tight from coughing and such. I've felt Cayston has helped me the most since my last hospitalization, but I am finding a slight ringing in my ears once I've done my neb this time around. Which is a bummer and something I will discuss with the Drs. this week at clinic.

I'm so happy to hear that your feeling soooooo good. That's what it's all about!! If you keep working hard, that won't change and your numbers will most likely catch up.

"I'm NOT a runner"

...but I run.

My family will tell you, I was not a born runner. My parents both run. My brother runs. My brother did cross country and track in middle school and high school. My family would go for family runs when I was growing up. Me? Oh I didn't go because I was content to sit on the couch. I wasn't a "runner" (I thought), so I didn't go. I have bad knees, that got worse when I ran a lot. I got side cramps so bad that it just wasn't fun. I could only run so fast because well, I'm 5'2" on a good day, which makes for some short strides. In my head, I just was the odd man out in my running family. I was ok with that...

...until I wasn't ok with that anymore.

When I got to college I realized I needed to do something to get exercise. I decided to give running another shot because, well, that's "what adults do to stay in shape" (thank you to my parents for modeling some form of exercise that adults do to stay in shape!) So I started running. My knees still gave me trouble if I picked up my mileage too fast. I got side cramps, until I ran through them and they started lasting shorter and shorter periods until I just didn't get them anymore. I learned it didn't matter how fast I ran, as long as I ran. The more I just ran, the faster I became.

Running became my outlet in college. I was a giant stress ball in college (...ok maybe I still am), but when I was running, I would feel free from the reality of school. My all time favorite thing to do was to run in the fall and winter, when the air was crisp, snow on the ground or leaves changing color. I would close my eyes (with the exception of a tiny sliver just to see the step or two ahead of me). The air would be cold, but the sun would be on my face. The peace and beauty on those runs made me fall in love with the sport.

I am now a sporadic runner. I go through periods where I run a lot. And periods where I'm doing other forms of exercise. But I always try to stay in good enough shape to be able to go out for a 3-4 mile run from time to time, even when I'm not in one of my running phases. As some of you maybe read, in January and February of this year I ran two half marathons without training. They went well. And I absolutely LOVE the environment of a race.

I decided a couple weeks ago to run another half marathon. My parents offered to take Mckenna for a weekend, so Ronnie and I could get away. So I found a race in San Diego...figured I could double-dip, a weekend away and a race. I have been working out 6 days a week doing our HIIT classes, but I haven't really been running, with the exception of a few long runs while on vacation, and a couple short ones here and there. I was a little nervous about how it would go. The two I did earlier this year I hadn't trained, but my mom and I went into them planning to run/walk them, and we did really well. So that upped the pressure for this one. I couldn't do WORSE (thank you, ego, for that pressure). I mentally wanted to break 2 hours. I had come close each half I had done in the past (2:09, 2:04, 2:03). But I didn't know if it was doable.

Well come race day, I let my pride and mind carry me. I felt good after the first mile or two, so I sped up. I started a little faster than I had planned, but decided to go for it. "It's just 2 hours," I thought to myself. "You can stand a lot of tiredness and pain for just 2 hours." So I pushed. I felt surprisingly awesome. I finished in 1:51:02. I was shocked. I never thought I could do it. I'm not a runner.

What's the point of my story? It's that runners are rarely born. Runners are made. If you told my parents 10 years ago that I'd run 3 half marathons in a year, by choice, they would have laughed at you. If you told me I'd love running 13.1 miles, I would have laughed at you. It's never too late to take up a sport. Runners aren't some specific group of people with a special gift. Runners are people who lace up their sneakers and hit the pavement, regardless of speed, distance, or skill.

I'll leave you with some pictures from the race...Look at them, and then...GO RUN, you runner you!

 About 6 miles in, I was just happy to see a face I recognized!

 I'm in all black...like ninja.

Right after getting back to the car...That's my "I'll send my parents a picture, but who can take a serious self portrait?" face!

Back at the room post race - who has two index fingers and ran a half under 2 hours? This girl!

Because who can take a lot of serious pictures? Not me!

For anyone that cares - this is my race according to MyRunKeeper (you always run longer than just 13.1 in a half since you are weaving around people, etc. and 13.1 is the shortest possible distance on the course)

For anyone who cares - my splits. In case you're wondering why mile 9 was so fast...I thought it was mile 11. Talk about a major buzzkill when I realized I was just at 9 vs. 11.