Thursday, August 22, 2013

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 :) 

Wednesday, August 21, 2013

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.

Tuesday, August 20, 2013

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.

Monday, August 19, 2013

"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.


Thursday, August 15, 2013

Thankful Thursday: Understanding & Forums


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:

Mandi is thankful for so many things that narrowing it down to just three was impossible today. Until next week!!

Ronnie's List:
I'm thankful for online appliance forums. It turns out that our microwave turns on by itself and runs in the middle of the night. This morning, it was incredibly hot and didn't smell so great. I looked up the issue online and was relieved to read that leaving the door open solves the issue until a technician can get out here.

I'm thankful for your understanding. I haven't been blogging as much lately as I'm sure at least one of you have noticed (Hi Grammy!!) because I just don't have as much to say. That of course could be a good or a bad thing, which in my case, is a good thing. Everything is awesome and we're still living the dream :)

I'm thankful for new landscape rock. We spruced up our yard this week and it has made a world of difference. No longer are there huge dirt patches where rock should be. 

So, what are you thankful for today?

Monday, August 12, 2013

Changing My Tune

For those who don't know me personally, I'm a Type-A to my core. I'm so Type-A, you maybe just gathered that through my writing. I like to get things done. I like to get things done quickly. The things I can't currently be doing, I like to make lists about and plan endlessly, so when I can get to them, I can be efficient and productive with my time. I'm a bit neurotic (actually, I think my dad described me as such in the last month). I like things to be perfect and prompt.

For those of you who have toddlers, know someone with toddlers, or have ever seen a toddler on the street, you know they are often the antithesis (at least to an adult's contrived perfect and prompt). Mckenna is no exception. She is ALWAYS busy, but rarely fast when it comes to completing a task. She is distracted 1,457 times between starting a task or activity and finishing it. She moves slowly because she knows less and is less coordinated than an adult (uhh, duh mom!) She moves slowly because she noticed things in her surroundings that I take for granted (oh, a beautiful butterfly? That wasn't on my schedule, honey). She isn't perfect. None of us are, but as a toddler she simply lacks many skill sets to make her anywhere near perfect. She fills a dog bowl with food, and more food makes it onto the floor than the bowl. Her arms are "weak" so she drops the bowl of food, even if she's being careful.

A toddler and a Type-A don't mesh well, on the surface. I find myself getting impatient at times. "I should have just done it myself," I think, "but if you teach a man to fish..." the angel on my shoulder reminds me. It's a constant inner battle. A struggle between productivity and efficiently, and teaching and cherishing. It's a tough balance to strike.

This article really spoke to me. This mom sounds a lot like me, but she's farther down the road. Reading her article spoke a lot of truth into my life that I'm glad I read now.

How beautiful that I can learn from Mckenna. That I can learn to notice that butterfly that wasn't on my agenda. Or that I can be taught patience as I pick up the random pieces of dog food from the floor for the 1,768th time this week. I do believe it's crucial to teach your kids to start, carry out, and complete a task. I do think it's key to teach your kids how to manage time and create schedules. I do want Mckenna to be efficient and productive. But does that need to be at the cost of hurrying her along each day? Do I need to teach her to tune out life's random blessings in order to do that? Probably not. So I'm working on finding a balance.

Let me know what you think of the article. And for any Type-A moms out there of toddlers, hook me up with some tips!

Thursday, August 8, 2013

Thankful Thursday: Sorry Mommy and Jesus' Girl

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 "Sorry Mommy." Mckenna has started to frequently say, "sorry" on her own when she does something wrong. Even if I'm really annoyed or ticked that she did whatever she did, it's so hard to care after you hear that sweet little Minnie Mouse voice remorsefully say, "sorry mommy".

I'm thankful for mini chocolate chips in the freeze. I've eaten more of them in the last week than I'd like to admit. And I may or may not eat them with whipped cream. It's a wonder my clothes still fit.

I'm thankful for a cool morning. This morning I went out for a walk and it was actually a little chilly when I started. I'm hoping that means fall is just around the corner. I've really been enjoying my morning walks and runs lately.

Ronnie's List:
I'm thankful for Jesus' girl. Today as we were leaving the gym, Mandi asked Mckenna if she was a Daddy's girl? She said no. Mommy's girl? No. Papi's girl? No. Grandma's girl? No. Nana's girl? No. Grant's girl? No. Shmeeg's girl? Kirsten's girl? No. Josh's girl? No. Chissy's girl? No. Pa's girl? Nana D's girl? No. Finally, she looks up at Mandi and screams, "Jesus' girl!!".

I'm thankful for plants. We've been filling up our home with more and more houseplants and I'm digging the "vibe" I get from them. They just look so fresh, green and full of life. I also like the fact that we use plant picking as a Daddy Date for Mckenna and I. She loves pulling the shopping cart along and pointing at plants saying, "That one?!".

I'm thankful for a persuasive wife. Mandi is really good at getting me to do something that she knows is good for me, that I will be thankful that I did, but that I don't want to do. She's not pushy. She's not mean. She's just right. I don't know how she does it, but it's certainly not a skill I possess.

So, what are you thankful for today?

Tuesday, August 6, 2013

Top Ten Tuesday: Popping The Pills

Man, it's been quite some time since I've done a Top Ten Tuesday!

Recently, or to be more specific, just over a month ago, I started a new clinical trial. I'm not able to tell you which drug is being researched, but I would bet good money that you have heard of it. It requires me to take a few pills in the morning and a few pills at night. Other than some trips to see the research coordinator for PFTs, weight, height, blood work and EKGs, it's super easy peasy. I've never been involved with a clinical trial that just required swallowing some pills. Usually they have involved inhaling medications which of course is more time consuming.

Anyway, here are ten things that I've noticed while taking the drug, or placebo, over the past handful of weeks...

1. Almost immediately, I felt like I had a bit more energy for everyday activities.

2. I've been able to push harder with increased stamina during my 45 minute "throw-up" class at the gym.

3. I usually run on the treadmill at a max of 5.0. Recently, I've been pushing it to 6.5 or 7.

4. I was unusually nauseous the first week of the trial. It has subsided some, but still present most days.

5. Could be a figment of my imagination, but I seem to sweat more (maybe because I can work harder).

6. My cough has decreased.

7. My sputum production increased the first 2 weeks and has now decreased from my baseline.

8. My lungs feel clearer.

9. I don't know my PFT results, but it feels like I'm able to take a bigger breath and blast out with less obstruction.

10. I'm more excited for the future. I've always been excited, but this could change some things.

There you have it. I'm sure there are more both good and bad things that I've experienced, but I wrote down the first 10 to come to mind. Keep your fingers crossed that others are experiencing the same positive effects that I have while taking this drug or placebo. Because, even if it's placebo, I'm very, very thankful for the results.

Monday, August 5, 2013

Growing as a Mommy

I knew nothing. I came home from the hospital thinking I could ride on the coattails of my babysitting experience and quickly learned that I really knew nothing about being a mom. For a perfectionist, this was maybe one of the scariest realizations I've ever had. Since I didn't know what I was doing, I would likely screw up, and I didn't want to screw up my most important job. I became the googling queen. Anything Mckenna did was googled to make sure it didn't deviate too far from the norm. If it did, I googled solutions. It was overwhelming. As Mckenna got older I became more comfortable in my skin as a mom. I learned her and she learned me. But as she evolved into her own little person, I began to realize that the challenges of being a mom were not going to get easier, they were simply evolving; each stage bringing new challenges. I like a good challenge, so don't get me wrong, it is a bit energizing, but it also makes me fearful of failure.

We kicked off a new sermon series at church that couldn't have come at a better time. Mckenna is making her way into the "terrible twos" and I think we are going to need all the tools we can get our hands on with this little spark plug. I should back up and say that we have already found a "parenting style" that we like and have been using, so we haven't been going blind, but the series seems like it will be the perfect complement. We have been really drawn to the Love and Logic philosophies. We first heard about Love and Logic through a colleague and dear friend, Lisa C. Greene, the author of Parenting Children with Health Issues - a great book for CF parents. Lisa has two kids with CF. Love and Logic is a parenting method that really resonates with us. If you want more info about it, you can check it out HERE. I'll spare you from lengthy explanations, though, since I still haven't gotten to my point in this blog!

Anyways, everything that was in yesterday's sermon sounds eerily similar to Love and Logic principles, but the best part is, the sermon was based on how GOD parents us. I'm not sure why it didn't dawn on me to take this approach, and simply look into scripture to see how God parents his earthly children to learn how to be a parent, but it didn't, so I'm thankful for the series we started. I will share the three big principles that were covered because I thought they were really interesting and really resonated with me. You can take or leave them!

Insulating Vs Isolating - In other words, we should teach our kids how to protect themselves in bad surroundings, instead of removing all of the bad from their lives. I love this one. As a mommy I find it really easy to want to eliminate all struggle, pain and heartache from Mckenna's life. In some situations it takes everything in me not to remove her from certain situations. But as the pastor said yesterday, and as I know in my heart, I can't protect her from everything all the time, so instead, he suggested, I should teach her how to handle negative situations in littler, easier things, so when she faces bigger things on her own, she's ready.

Deep End Learning - For this concept the pastor gave an example of a kid who went through swimming lessons and at the end "only hung onto the side." The dad was mad and went to ask for a refund because he thought his kid didn't learn what he should. The teacher said, "he does know how to swim, he just doesn't want to." So when the dad got home, he took his kid in the backyard and threw him into the deep end of their pool. The kid swam out of the pool. But the remarkable thing was, the first thing he did was run into the house and exclaim to his mom, "I SWAM." The point was sometimes kids just need to be pushed (lovingly) to grow. Ronnie all the time says to me, "She'll figure it out" when I want to rush in to help or save Mckenna in the midst of something. But 10/10 times he's right, she figures it out.

Exposing But Not Overwhelming - This one seems like a fine line and one of those things that takes practice as a parent, but it's the concept that we should expose our kiddos to things, but at the appropriate times and in a way that isn't overwhelming. This one I know will take practice for me, but I'm hoping to get it down because I think it's a really important concept in the midst of the other two. Learning opportunities are crucial, but they need to come at an appropriate time and place so Mckenna can actually learn from the lesson.

Anyways, I dig it. I can't wait for next week. I checked our church's website and the video of the sermon isn't up yet, but you can watch for it HERE if you're interested.

Thursday, August 1, 2013

Thankful Thursday: Music & Helplines

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 mom. This week she celebrated her birthday, and I could not be more thankful for the years she's been on this earth and the years yet to come. My mom is one of the most incredible people you could have the opportunity to know. She is a better wife, mother and friend than anyone I've ever met. The love, commitment and sacrifices she has always made for my dad, brother and me are unmatched. As an adult, I am privileged to not only call her mom, but friend. As a mother now myself, I have grown to respect her that much more.

I'm thankful for the ability to run. Last weekend I was able to put a lot of miles on my legs while running at the shore. I feel so blessed to be able to go out for a run, and especially blessed to be able to run with the ocean breeze at my back. It was such a great place to run: good people watching and beautiful homes to look at.

I'm thankful for music. I have been downloading new songs lately and loving it. It is pretty incredible how certain songs can really speak to you. Not to mention, runs would be really terrible if I didn't have music to listen to...I mean, who wants to listen to themselves super out of breath?! It just makes me more tired.

Ronnie's List:
I'm thankful for helplines...and just wish I would cave-in and use them sooner. I've been battling my gas grill for quite some time now and had all but given up on trying to get it to light. I've replaced parts, had other look at it and thought I was finally at a dead end. I was resigned to the fact that I was going to have to have a professional come out and look at it. Well, when I called to hire a professional, they first had me talk with someone from their helpline who walked me through some steps after I described the problem. Wallah!!! It works like new.

I'm thankful for used clothes stores. Baby and kids clothes are relatively cheap. Used baby and kids clothes are even cheaper! Mckenna and I recently went on a "shopping spree" and picked up some new threads for Mckenna. You should have seen her giving me a fashion show in the store. She looked like she was walking down a runway. Yikes.

I'm thankful for new filters. It had been quite some time (as in never) since I had replaced the filters in my nebulizer compressor. I finally ordered new filters and holy moly, it's like I have my old machine back. 

So, what are you thankful for today?

Wednesday, July 31, 2013

Quicker than expected...

One thing that's been pretty consistent in my adolescent and adult life is the ability to make up ground quickly in my exercise health, but just as quickly lose it if I table it for a while.

While being on our east coast trip, I did very minimal exercise. Yeah, I walked around quite a bit and rode bikes often, but rarely did I push myself to the level that I'm used to at home. Mandi and I managed to do one, yes one, crossfit style workout in the 10 days we were away and I put on my running shoes exactly one time. (And of course there is always a reason - I experienced my first UTI EVER on this trip within the first 3 days of us being away and it lasted about 5 days. With that said, I still didn't maximize all of the days that I wasn't peeing fire.)

My run actually felt a lot better than I expected it to considering I haven't run for distance in over 3 months. I get so much cardio from the group classes that we do, and cough up so many lungs, that running isn't really necessary. Well, on my trip I was inspired by my crazy wife, who ended up running like 25 miles in three days, to actually lace up the ol' sneakers and go for a run. Not knowing how it would feel, I tried not to let my mind wander about the impending pain that was to come upon me.

To my surprise, it really wasn't all that bad. Granted, I tried to run down hill as much as I could, and I'm sure the ocean breeze helped with my "freshness", but even my lungs passed the test much better than I was expecting. I ended up running about 3 miles, and if I didn't feel pressed for time, I think I could have eeked out another mile or so.

Anyway, I'm happy that I got something done on my vacation other than eating ice cream for dinner and sitting around on the beach, even if it was just 2 workouts. I think those two workouts set me up quite nicely for my return to our classes this week as I don't think I lost as much ground as I usually do the other times that I've taken off of exercise. Sure, the workouts have been tough, but they've been manageable.

It feels good to be back, and I'm looking forward to where I can take my exercise health from here!!

Monday, July 29, 2013

Back to Reality

Ronnie, Mckenna and I were blessed to spend time with family and friends on the east coast last week. It's a trip we had been looking forward to for months. Usually once a year we go to South Carolina or the Jersey shore with some dear family friends, and this year, we were blessed to be able to not just go to the shore, but go to their son's wedding. Since we were going to be on the east coast, we decided what better use of time than to get to spend time with my Grandpa and head to the shore for a little vacation.

We hit up Lancaster, PA to see my Grandpa. Mckenna had never met my grandpa, her great grandpa, and what a sweet experience for both of them. Mckenna warmed up to her "Pa" very quickly and enjoyed every moment she spent with him. We rented a house to stay in (with my parents who were also there), so we brought my grandpa over each day to just hang out for the day. We all so enjoyed time together. My grandpa is the kind of man that light's up a room with his whit, stories and jokes. Anyone who interacts with him even just for a moment leaves feeling happy. It's an incredible character trait I would love to learn from.

After Lancaster we headed to Wilmington, DE for the day for the wedding. It was a great wedding. The happy couple planned an incredible day, one that I'm sure they'll look back on fondly, forever. It was a kid-free wedding, so Ronnie hung with Mckenna and found all sorts of adventures, while I went to the wedding. Their daddy date was complete with a figure skating competition they stumbled upon, ice cream for dinner, and snuggling in bed because for some reason Mckenna was less than excited about sleeping in her pack n play in the bathroom...gee I can't imagine why!

After the wedding we headed to Avalon for a little relaxation and even got to tag on a trip to Rohobeth to meet some new friends (well new to us...they were friends of my parents' and family friends). We had such an incredible time and are so blessed to have gotten to spend the day with them. At the shore Mckenna got to spend time on the beach, go for tons of walks and enjoy massive amounts of ice cream. She dug it...and so did her momma.

We were all sad to see the trip come to the end. We had such an incredible time with family and old and new friends. But we got out of there before we got too spoiled, and we are excited to settle back into the normal daily grind...I may just day dream about the trip for 50% of the day the next few days.

Thursday, July 25, 2013

Thankful Thursday: Ice Cream & Cloud Cover

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 family and family friends. We have been able to spend A LOT of time with my family and some great family friends this week. We all have such a great time together and I am blessed to get to spend time in their presence.

I'm thankful for rain. We are on the east coast and have actually gotten to see some rain while here. It is freakin' awesome to see rain. I miss it in AZ.

I'm thankful for ice cream. On this vacation I have had ice cream almost every night. Who wouldn't be thankful for that?!

Ronnie's List:
I'm thankful for banana splits. I haven't had one for a very, very long time but for some reason have been craving one lately. Last night I capitalized on my desire meeting the perfect location to order such a tasty treat. It was incredible!! (Ice creams: Chocolate Marshmallow, Banana Fosters, Kohler's Creme Doughnuts. Toppings: Hot fudge, Oreo cookies, Peanut butter cups, whipped cream, cherries)

I'm thankful for a responsive CF team. I came down with a little UTI and slight exacerbation/cold while out east that required some intervention. I had a response from my doctor within minutes of sending him a message. He called a script in for me and I picked it up within the hour. Feeling much better now!

I'm thankful for cloud cover on the beach. I'm not one to sit in the sun all day, but I do like being on the beach. So for me, sitting on the beach during a cloud covered day is just about as good as it gets!

So, what are you thankful for today?

Wednesday, July 24, 2013

I'm Fighting For...


**Reposted from August 2010**

Quite often, I'm very fortunate to be asked questions by you guys that really make me think and evaluate where I stand on a particular subject. The following exchange that I had with a super awesome cyster and fellow CysticLife member was no different. We've had some tough goings lately in our little community and everyone has the right to, and does, react differently. Thank you for challenging me on this topic and really making me think about where I stand.

Message: Hi Ronnie, It's been a while since I have been keeping up with cystic life. Some of the reason is because I am busier now with Colton being out of school for summer and the other part of the reason is I get the blues. I am an optimist and a realist so I have great faith that I will live a long life, but also being a realist I will have moments of panic and fear at the thought that I know what this disease does to people and how fast something can go wrong. So I have a question for you I didn't want to post openly, do you hear everyone's story's, sad and inspiring and not get blue? How do I find a balance of being connected to the CF world without letting the sadness of some of it consume me? I put it like this to my grandma the other day, I can handle myself having CF it's my life I don't know any different, but what gets to me is that babies are still being born with CF and have to suffer and fight the battles we have been fighting our whole lives, that's what makes me sad, and I know a lot of CF'ers say the same thing about not knowing any different but as a mother seeing a child be affected by this disease is heartbreaking to me. It inspires me to do fundraising but it doesn't seem like enough. I sometimes feel we are being withheld from a cure because of the pure business of money making for drug company's. I'm sorry if I used this message to ramble or wasted your time, but I just wonder how you find the balance?
Response: So yes, I certainly read about and talk to many parents who have lost their children to CF and I myself have lost a handful of close friends. Whenever this happens I generally have the same reaction:

Compassion- I of course feel very sad for the family, but it is followed quickly by my next feeling;


Relief- I'm just so happy that the fibro or cyster no longer has to endure his or her pain and suffering;

Motivation- The fact that right now everyone born with CF dies with CF motivates me beyond no end to never stop fighting for awareness. At the very least, I want every person in this world to know what's killing my friends;

Self-reflection- I then think, am I doing everything possible to put myself in the best position to prolong and even possibly avoid the feeling of loss and despair for my family?;

I kind of look at our CF journey like this...we're all driving a car flying down the highway. Just the mere fact that we're driving in the car increases the chance that we'll get in an accident and die, having CF increases the chance that we'll get sick (have an accident) and see an earlier death than people not driving cars (non-CFers). Now, the question becomes, what do we do when we see a bad accident on the side of the highway? Do we completely stop our car and put ourselves in harms way? Do we see the accident and say a prayer for the people involved?

Do we slow down and hope nobody hits us from behind? Or do we see the accident, say a prayer for the people inside and then use it as a reminder that we better stay focused on the highway? We all know that if you focus on the accident for too long, you will definitely get in an accident yourself.

Now, you could say, "well what if I don't want to take my eye off the road and just drive (not be involved in the community)?" I would say that is a personal choice and one that many within our community make. For me though, it's a choice that I won't make. I like to see everybody else's car on the highway, how they drive, how they take care of their car, what color it is, who's inside, etc. I think we can really learn how to drive our car on the highway if we watch others around us drive theirs.

And yes, we're going to see some accidents, we're even going to see some accidents that result in death, but we're also going to see a lot of cool cars and meet a lot of great drivers. We're going to have the opportunity to meet some fellow drivers on the side of the road and let them ride in our car for a bit until they get a new one. Heck, we may even be driving a tow truck at the time and be able to carry them along for awhile.

As I look back at the highway I'm driving on, sure I see a lot of wrecked cars and tire tracks, but I see many more cars to the right, left, in front and behind me traveling just as fast or faster than I am. And if I see a wreck, I'm always willing to pull over and see what I can do to help, but I know that I'll have to get back into my car soon and drive.

Edit from Ronnie: Some of you may have just read that and thought to yourself "that sounded really insensitive". To be honest with you, when I read my words over again, if I were an "outsider", I would probably think that too. But for those of you who know even just a little about me, you know that I will do anything and everything for absolutely anyone in this community. My heart breaks every time we feel a loss, but it doesn't only break for the dead, it breaks for those of us still left here on earth. That's who I'm fighting for. I'm fighting for Josh. That's why I wake up everyday with a smile on my face and make sure that at least one more person in this world will hear the words Cystic Fibrosis. I'm fighting for Sara. That's why I thank God for her every morning. I'm fighting for Emily. That's why I will not stop until CF is a thing of the past. I'm fighting for Mandi. That's why I will never stop taking care of myself and loving those around me. I'm fighting for Kat. That's why I will do everything in my power to reach those in the CF community early enough to make a difference. I'm fighting for Jamie. That's why I try to answer as many questions as I can. I'm fighting for Kate. That's why I try to bring hope to the parent's of CFers. I'm fighting for Jesse. That's why I try to show the "normal" what our normal looks like. I'm fighting for us. That's why I was put here. That's why.

Monday, July 22, 2013

Toddler Travel Tips

I should probably preface this whole blog post by saying that I am not an expert when it comes to traveling with a baby/toddler, but we recently had someone ask us to post tips on the blog, so I'm doing just that. With that said, please leave additional tips in the comments section if you have any!

Ronnie, Mckenna and I headed out to the east coast with my parents for a family friend's wedding in Delaware. I was a little nervous, to be honest. Mckenna is the typical toddler. She doesn't stay interested in any one activity for longer than 34 seconds (ok, I'm exaggerating, but not by much) and she cannot sit still. She rarely will sit still to even watch a TV show or movie (she's actually never sat through a whole cartoon...even fast forwarding through the commercials). The only time we can get her to sit still for a "long" period of time is in her high chair, with an activity. So with that here are my tips:

1) Bring new toys - When you think you've packed enough toys to last a lifetime, pack a few more. Before the trip, I went and bought some new toys for Mckenna. I tried to find cheap little things that I didn't care if they got lost, so I went to Michael's and a dollar store. I got a little mini baby doll, some squishy balls, little people and animals that walked when you wound them up, a sticky spider, you name it. I then bought two little bags that zip at the top and split the knick-knacks between the two bags. This way I could hand her a little bag to play with by herself for awhile. I figured the zipper would take some time, then tearing through each toy would take some time. I actually handed off one of the goodie bags to another mommy on the plane that was struggling with her little man (I'm pretty sure she was clever and flew during his nap time...however, he didn't nap!) I also bought some fun "activity" type toys, like giant beads to put onto string as a necklace, crayons to color, and a new sticker book.

2) Fly during a good time - If little johnny boy is always cranky in the mornings, that would be the last time I'd want to be on a plane. Mckenna doesn't have definite cranky times anymore (she used to always be fussy in the evenings as a baby), but she is more likely to be cranky in the afternoon than she is in the morning. So we flew in the morning, and through her nap. I was hopeful she'd eat up some of the flight with a nap, and she did. Just know, flying through naptime could backfire if they don't nap. The poor mom on the plane with us had it happen and neither of them looked very happy! Mckenna isn't a sleep-anywhere-nothing-can-wake-her-up kinda kid, so I didn't know how she'd do, but thankfully she slept a little.

3) Bring a change of clothes for everyone - I packed a change of clothes for Ronnie, Mckenna and myself. We thankfully didn't need them for ourselves this flight, and just needed to use the change of pants for Mckenna (I left her in the same diaper too long and it leaked), but we did have one trip where Mckenna spilled my coffee over the both of us and I was glad we had a spare.

4) Pack extra diapers - We haven't had to use them, but I always feel good knowing we have plenty of diapers to get where we are going, and usually use a bunch of the spares when we get where we are going, buying us extra time before having to get to a store for diapers.

5) Load up on snacks - What better time to teach your child to entertain themselves with food. Ha! I kid. But seriously. We flew through lunchtime, so I had a sandwich, raisins, pretzels and fruit pouches (is that what they're called?) I did read somewhere that you should steer clear of too much sugar, as it could backfire with a hyper kid. I took their advice.

6) Get them their own seat - This one isn't always possible. Flights can really vary in price, and sometimes this just isn't possible (or reasonable). This was the first flight where we booked Mckenna her own seat, and holy smokes was it worth every cent. We brought her car seat on board (we then used it in our rental car as well). Mckenna isn't a huge fan of her car seat, so I wasn't sure how it would go. But I figured it was better than no car seat. Mckenna is "trained" to use her car seat. She knows what it is, how to sit in it and that when she's in it, she's in it until we say it's time to get out. Mckenna is not trained to use a plane seat. All I could picture was the climbing, twirling, jumping, squirming, etc that would happen in a chair twice her size with no harness holding her in. It worked beautifully. We actually let her out of it only to go to the potty. I figured if we let her out other than that, all we would hear would be, "out, please."...for the remainder of the flight.

7) Gate check a stroller - We went back and forth on whether to bring our stroller each time we have flown with Mckenna. Each time we are glad we have it. It helps to have a place to strap Mckenna into, it can hold a bag or two, and it can help us move that much faster if needed. But even more than at the airport, it's really nice to have it when you get to where you're going. We always bring our jogging stroller, that way we can run when we get there.

8) Put on a smile - You will be everyone's worst nightmare when they see you walk on the plane. Sure there's a grandma or two who will smile and wink at you as you drag what looks like all your worldly belongings down the aisle, but for the most part, there's a look of fear in your fellow travelers' eyes. When you find your seat, give huge smiles to all your neighbors and assure them you'll do all you can to make the flight as painless as possible for everyone. When the going gets tough, throw an extra smile their way and start passing around your snacks.

So far traveling with Mckenna has always been better than I think it will be. But I'm certain at some point there will be a flight from you know where!

Thursday, July 18, 2013

Thankful Thursday: Awesomeness & Secret Handshakes

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 family. I absolutely love spending time with my family. I enjoy all of them. Their different personalities. Their strengths. Their quirks. I am so thankful I get to spend so much time with them.

I'm thankful for secret handshakes. Mckenna and I now have one and, well, it's pretty awesome.

I'm thankful for Ronnie. There are many things about Ronnie that I love and that I'm thankful for. But today, I'm thankful for the way he builds me up. He always makes me feel like I'm the most awesome person in any room. And while I'm never the most awesome person in a room (unless, of course, I'm alone in that room), I always know that in his eyes, I am. And I love that!


Ronnie's List:
I'm thankful for a clever wife. Mandi mothers and wifes(?) like she's been there before. I don't know how she's such a natural, but I do know that I love it. She just makes life so much easier for Mckenna and I that it's not even funny. I would list out a ton of examples, but I don't want to be giving out her "secret sauce"!!

I'm thankful for mobile hotspots. We're currently at a location with no internet. Generally, that would cause a slight panic for me since everything I do is online, but fortunately, our phones can act as an internet router in a pinch. It's not as fast, but it does the trick.

I'm thankful for God's creation. Whenever I travel, I'm always reminded how diverse and wonderful all of God's creation is. Where I come from, there aren't too many colors, so I can easily forget how lush and vibrant nature can look. It's been nice to see a little bit of "life" in the yards around us this week :)

So, what are you thankful for today?

Wednesday, July 17, 2013

Here's Why I'm Open About CF

**Reposted from May 2012**

I recently posted a question about CFers and being secretive about their disease. I also asked why some consider their numbers (PFT's) to be a private matter. After reading through all of the responses, I figured I would post my thoughts on here concerning this subject. -Awareness is key. I don't shout from the mountain tops that I have CF, but I also don't hide it. The more people who know about CF and it's affects, the better. Imagine if everybody knew what CF was and that you can't catch it? Would children need to be so ashamed or get teased with comments like, "staying away so you can't get it"? Knowledge is power in every circle of life. The more people know, the less ignorant they become. For ME, and I stress ME, I dedicate my life to spreading awareness so that hopefully future generations won't ask the question, "What is CF?". It would make ALL of our lives easier.  

-If people "look down on you" for having CF, why in the world would you want them as friends anyway? It's not something that I state with my name when I meet somebody, but I certainly bring it up quickly if I see any type of relationship forming. Often, CFers with larger support systems seem to be healthier. An easy way to bring it up with friends (without actually bringing it up) is to set your digestive enzymes on the table before you and your friends dive into a meal. That will ALWAYS get the conversation going.  

-Generally speaking, we only hide "skeletons in our closet" if they are BAD things. CF may be a horrible disease, but it's not a character flaw. People will often react to CF by the way we present it. If I'm very secretive about it, then people will assume that it's some terrible thing that I don't want exposed about myself. CF plays a small role in who I am, but it certainly plays a role. For me, I think it has had a positive effect on who I am and many of my friends and family members have said the same thing. If you spin CF into a positive aspect of your life, friends tend to gain respect for your tenacity and perseverance in facing this disease. You don't become the "sick one" of the group, you become "the warrior".

-A common response I got was that people wanted to be seen for who they were and as an individual yet they didn't want to be seen as "different". To me, this seems like competing answers. Bottom line: I AM different. I have a different hair color than some of my friends, I weigh a different amount than most of my friends, I'm uglier than ALL of my friends, we all don't like the same movies, some of us are smarter than others in the group, and oh yeah, I have CF and they don't. CF does make me different AND it makes me an individual. Many of my friends come to me in hard times cause they've seen me navigate though these different challenges I've had in my life. I wear that as a badge of honor. I'm thankful that CF has molded me into a person that my friends would seek advice from. Would I be that way without CF? I can't say for sure, but I doubt it.

-When it comes to PFT's I think it's VERY important that we share those numbers with each other. If your PFT's are higher than mine, I want to know what you do differently than me. Maybe it's pure luck and you have a superior genetic code when compared to me, but what if it's not? Aren't we all willing to do ANYTHING to improve our quality of life? When I see someone my age that has higher PFT's, I admit, I get a little jealous. First I think, good for them, that's awesome (and I sincerely mean that), but then I think, "I wonder what their CF story is and what they do on a daily basis that is different from me?" I get it that some of us can do EVERYTHING right and still be very sick. Is there anybody out there though that would argue that TRYING to do everything right will MAKE you sick? Of course not. Each of us needs all the help/tips/tricks that we can get our hands on. Personally, I want every CFer to be healthier and happier than me and if I can provide them information on how to get the done, then that's exactly what I will do. We're all part of an exclusive club here that only has 70,000 members world wide. We all play for the same team. Doesn't it make sense that we all share our playbooks?

Monday, July 15, 2013

Kids Say the Darndest Things

Mckenna has always been a talker. We've post several times about how vocal she is. Well those verbal skills make for some serious laughs from time to time. The things she says and the way she says them crack us up. Here are some favorites:

1. "Aye a mimi"- This is her version of "wait a minute". She doesn't say it to tell us to hold on, but rather, when she's doing something questionable. When I catch her doing something I'm not sure I want her to do (like unzipping pockets in my purse, looking in a cupboard, etc), I say, "wait a minute" in a silly voice. So now, in a silly voice when she sees me first see her doing something questionable, she says, "aye a mimi".
2. "mm hmm"and "okay" - Apparently when I list out the steps of something we are doing, "ok, let's get your shoes, put on our hat, get your milk, and get in the car" (all said as I'm doing each thing) I guess I must say, "okay" or "mmhmm" as I do each thing. Well now Mckenna says, "shoes..mm hmm" "milk...mm hmm" as she tells me a list of things she'd like to accomplish. And sometimes I think she uses it thinking it will make her request more likely. Like then it's not a question, but something that IS happening. "Treat....mm hmm" It cracks me up!
3. "OTAY" - Mckenna has realized it's not just what you say, but how you say it. Sometimes when I say something and follow it with, "okay?" she says in a silly voice, "OTAY" and smiles. It's cute.
4. "Oh Memma" - Mckenna says her name, "Memma". And sometimes when she does naughty things Ronnie or myself will say, "Oh Mckenna"...which she then immediately parrots, "Oh memma!"
5. "Du, Ee, Aye" - This would be Mckenna for "one, two, three". She doesn't know how to count, although she does fill in the blank correctly from time to time if you say, "one..." she will say "two" or if you say "one..two..." she will fill in "three". However, when she wants to indicate to you that she is counting (like counting to three during hide and seek or before jumping off the edge into the pool) she says, "Du, Ee, Aye"...sure, that sounds like "one, two, three," right? Ha!

I could go on all day, but those are some of our favorites right now. I love that I can get insight into her little mind and see her personality come through in her words. I'm sure it will only get more fun from here!

Thursday, July 11, 2013

Thankful Thursday: Swim Lessons & White Vinegar

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 swim lessons. Mckenna took a two week swim lesson ending last week. It was so cute to watch her in the pool, see how excited she was every time she got to do something with the teacher, and watch her grow as a "swimmer". Mckenna seems to really enjoy swimming and pick things up quickly, so it made for a fun experience for all of us!

I'm thankful for lots of class times at the gym. I was in Tucson for work all day yesterday, so I wasn't able to go to our normal class time. Thankfully, they had a few of our classes in the evening, so I could make up the workout. I'm thankful that our gym allows me that flexibility.

I'm thankful for avocado. I've been adding avocado to my salads lately and man oh man, it's good!


Ronnie's List:
I'm thankful for a full day with Mckenna. Mandi had to travel for work and was gone the entire day yesterday. It was nice to be able to hang with my little girl all day and not worry about work myself (except during her nap time). It also makes it easier for Mckenna and I because there is no "mommy option" and she figures out quickly that she'll just have to put up with me and can't escape to Mandi :)

I'm thankful for white vinegar. I always forget about the magical stuff that white vinegar can be used for. Yesterday I used it to clean and decalcify all of our faucets and they look like new! I need to use that white magic more often.

I'm thankful for extra treats. I'm currently taking a medicine that requires a high-fat snack about 30 minutes before the dose. I usually eat peanut butter, chocolate peanut butter, or some other tasty treat which doesn't count towards my calories for the day. [I'm not trying to lose weight, but I am trying to reshape my body a bit which requires me to alter my calorie intake.] 

So, what are you thankful for today?