My CFF Gala Speech

I'm not a fundraiser by nature, but I can certainly get up and share my story with passion. I was honored to be a part of a record breaking night for the Southern Arizona chapter of the CFF. They were able to raise over 400,000 dollars (the year before they raised around $175,000) and I was happy to be a part of that!

   

How Winners are Made

As I mentioned in a few blogs, I started training for a marathon after the news of our latest IVF cycle being a big, fat bust. A marathon was never really on my radar. As I've mentioned before, I'm not a "born runner." I hated it until college, and even then I only ran because I assumed it's "just what adults do to stay in shape." I certainly didn't love it. However, slowly but surely, the last year or two, I have fallen more and more in love with the sport of running. And after I ran some half marathons, a full marathon crept onto my bucket list. So here I am, half way through a training plan for a marathon.

If you've never trained for a race before, essentially your mileage slowly increases each week. Your weekday miles climb a little over the weeks, but not too much. And then you have one long run on the weekend that increases a mile or two a week for a couple weeks, then drops way down for a recovery week, and then continues to climb the next week. (If you're curious, I'm following a Hal Higdon training plan that can be found HERE)…It looks like this (I just finished week 8 and am now on week 9):

Anywhoo, that's not really the point of this blog (yes, peanut gallery, it did take me 2 paragraphs to get to the point..I'm sorry!) The point of the blog is to share with you my thoughts on my 15-miler this weekend. Running 15 miles alone (because my dad is out of town, I had to go it alone) feels, well, long. You have a lot of time to think (2 hours, 5 minutes, and 9 seconds to be exact). My legs were sore from the beginning…I had run 7 miles the day prior and done our class at the gym…so my legs weren't thrilled with me. I loosened up and hit my stride (no pun intended) around mile 3 and felt good til mile 12. Around mile 12, I was getting tired, bored, and ready to be done. My mind started to wander and dream of the moment my legs could stop moving. It was then that I started some positive self-talk. What I'm about to share is possibly the scariest look into my brain you'll ever get; maybe the most embarrassing. But it needs to be said.

I have learned through running, that our brains are remarkable. God wired our brains to power our bodies in a huge way. When our bodies get tired, our brains can take over and push our body to complete a task (in many cases). So when my body is tired on a run…I allow my brain to coach it. I begin telling my body what it needs to hear. Here are a few of the things I tell myself (this, my friends, is about to get embarrassing):

1) "You're not in pain, you're just tired." This is a big one. And a fine line. My knees are usually aching. The gnarly blister on my arch is burning. But I'm not in true pain. My body is just tired. It wants to stop. So I tell myself, over and over, "You're not in pain, you're just tired." This reminder is huge. Being tired isn't a bad thing. Being tired is just a matter of needing to push through. Side note: Sometimes you are actually in PAIN. In those cases, it's advisable to stop. But learning what's pain and what's fatigue is crucial.

2) "You can do this. It's just one foot in front of the other." When I'm tired. I'm tired. But when I make myself feel silly for wanting to stop, by reminding myself I only have to move one leg, and then the next, step, step, step. It helps. I mean, it's just walking, but faster, right?

3) "You have ____ miles left. That's just ____ minutes." I find if I think about how many miles I've covered, it's just depressing and makes me more tired. So I choose to just think about what I have left. I think about it as if I have just started running. "You have 4 miles, that's just 30 minutes." There are a couple keys here. First, I always round down…I won't feel the difference between 32 and 30 minutes. And 30 minutes just sounds better. Second, I never start doing this til I'm within 4 miles of the end. "You have 12 miles left, that's just 1.5 hours," sounds HORRIBLE. I'd call a taxi.

4) "You are so lucky." Cue sappy music. When I start feeling really tired, I decide to flip it and reverse it. I tell myself how lucky I am that I have 2 legs that feel fatigued, 2 legs that have carried me all this way. "Enjoy it," I tell myself, "you are so lucky." I look around at the sites. I breathe in the crisp air. I find whatever I can that is beautiful around me and I admire it. Last weekend, I found 2 trees that were changing colors (there were only 2 the ENTIRE run…we don't get fall here really.). They were yellow. They were beautiful. "You ran far enough, you found fall…well done," I told myself. I saw a horse, "man, horses are incredible creatures," I admired (I also admired his legs. They were pure muscle. "If only I had horse's legs," I thought). I take it in. Soak it up. To run, and to hurt because you are accomplishing something, are both blessings.

                                           ….and the most embarrassing one of all….

5) "This is when winners are made." Yes, I do say that. More than once. Yes. I once have said it aloud. Ok, I did twice on Saturday. I know, it's a frightening look into my brain. But seriously, the last couple miles of a run are all that matter, in a way. The last couple miles are what will build a better me. It's the last mile or 2 that are longer than the week before. They are what create progress. They are what break you down and build you up. No one has ever won anything that hasn't pushed themselves farther than they had gone before. And while I will never, ever, ever "win" a race, I can win against myself. I can beat myself. And so I tell myself with embarrassing frequency, "you have to do this. You have to push. This is when winners are made." (Now erase that from your memory…)

If you're out exercising this week…give these little catch phrases a try. Be your own cheerleader and coach. You'll be surprised what your brain can make your body do…however, you may not want to publicly admit any of these thoughts to your friends and family (as I just did), from experience I can tell you, you'll be mocked :)

Thankful Thursday: PJs & Lettuce

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 cute PJs. We got Mckenna some new PJs since the weather is cooling off. She looks so stinkin cute in her PJs when she first wakes up. It's my favorite.

I'm thankful for sleep. This last week I've been forcing myself to get to bed earlier and getting a solid 8 hours of sleep. It is glorious!!

I'm thankful for new running shoes. I got new running shoes last Friday and am so excited each time I lace them up! 
Ronnie's List:

I'm thankful for peanuts and raisins. Do you like peanuts? Do you like raisins? Have you ever tried them together??  The combination is awesome. So awesome, that I definitely eat too much of it. I think of it as a peanut butter and jelly without the bread :)

I'm thankful for fresh lettuce. I made a salad today with lettuce from the garden and it was excellent. There is just something about eating lettuce that I planted, watered and cut with my own knife. Today was Butterleaf, tomorrow may have to be Romaine!

I'm thankful for the ability to disagree with someone I love and/or respect. Too many people feel that everyone must agree with them in order to get along. Thankfully, there are many people in my life that disagree with much of what I say - and they still love me :)

What about you? What are you thankful for today?

Bible Beliefs on Facebook

We all know I like to discuss a wide-range of topics. One of these topics, and by far the most important, is Jesus - Who He is, Who He is not, etc. Had a great number of questions, thoughts and counterpoints thrown my way (which I love) and my response ended up being a blog-like response, so I pulled it over here.

Here is my original post on Facebook:

From a Gallup poll of self-described Christians (in America):50% don't believe in the existence of Satan33% believe Jesus sinned while He was on earth25% dismiss the concept that the Bible is accurate in the principles it teaches
That's a dangerous road to go down my friends...

Of course, their were some who agreed that was dangerous and some who did not. And because FB is FB, it grew into a larger discussion about a variety of theological topics. Through my answers, you can probably glean what the questions were. If you cannot, click here.

I must point out that I am no Bible expert. nor God expert. My thoughts on this do come from my own study of the Bible and teachings that I have received for the past 3 decades or so. I will certainly give you my true belief on all of your points, but as always, I encourage you to challenge and study up on anything I say.

I agree with you that we will never know the FULL character of God until we are in His presence, but with that said, He has certainly revealed everything that we need to know about Him to develop a personal relationship with him. When people speak about "the mystery of God", they're not so much speaking of the unknowns of God, but the knowns of God that we will probably never be able to understand (eg. God's omnipotence, omnipresence, etc).

Totally understand you giving up on reading the Bible because of it's difficulty. I think the toughest part about the Bible, is that it's essentially a history book, that without cultural reference, is tough to piece together. Just like I was taught history in school, otherwise I would have never been able to tell you have of what I learned on my own, I always found it less frustrating, and more effective, to study/read the Bible with someone or with the help of some sort of guide, or commentary. I find myself always trying to challenge what certain commentary says with Scripture alone, and it always ends up strengthening my faith. I never just take so and so's word for it (or at least try not to). When studying the Bible, I always let the clear (what is easily understood or plain), trump the unclear. If God said it, I take His Word for it.

Yes, humans are flawed, for sure. Here's the thing though, the prophecies that Christ filled from the Old Testament, in His life throughout the New Testament would be nothing short of a mathematical miracle. Statisticians have run the number and essentially said that it would have been impossible for Christ to do what He did, no human has or could come close to replicating it. I agree, no human could. Thankfully, I don't serve a human. Why do I bring this up? Because it's all about Christ. That's Who it began with and that's Who it will end with. So, you can have a relationship with Christ, and still be skeptical about man's ability to write the Bible. I would however challenge you to develop a relationship with Jesus first, study His Word, and then reevaluate what you feel about the Bible. I must warn you though, to develop a relationship with Him, your going to have to get to know Him, and the only way of doing that is through Scripture and prayer. If you try to get to know Him outside of Scripture, you're making up your own Jesus. Jesus already gave us an entire book on Who He is.

I would also encourage you to look up what happened when they found one of the early manuscripts of the book of Isaiah (Dead Sea Scrolls) and compared it to the Bible we use today. I'll give you a hint, nothing substantive has been changed. There is no human telephone game that could have accomplished that without God.

Comparing Eve to the writers of the Bible is like comparing apples to oranges (pun intended)  They are alike in this however: She was a sinner, yet God used her for her purpose. The writers of the Bible were sinners, yet God used them for their purpose. Ultimately, they were all used for God's purpose, and super awesomely, that includes us. Remember, the writers of the Bible simply wrote down what they saw, experienced, touched, felt and were told. Any chance that God could have directed the events they 
witnessed and/or were told?

As always, I welcome your thoughts and challenges.

Some hospitals do awesome things.

If this video doesn't make you smile and warm your heart, please, check your pulse. There may or may not be some CFers in purple ;)



Big ups to CHAD for putting this together.

Thankful Thursday: Dad & Grandma

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 dad. I'm always thankful for my dad. He's one of my biggest role models. But lately, I've been especially thankful for him. We are both training for a marathon in January, and I have been able to spend long chunks of time with him alone, during long training runs once a week (usually Saturday). This time together may end up being my favorite thing about my marathon experience. 

I'm thankful for a new computer. My parents gave me a new computer for my birthday and holy moly, life is so much better. My old computer was getting super slow and my mac mail was all messed up. This computer works like a dream and makes like beautiful!

I'm thankful for hot chocolate. It's that time of year in Arizona when the weather finally cools off and there is no better way to celebrate than with a warm mug of hot chocolate.

Ronnie's List:

I'm thankful for sweatshirts. It's always a treat when you get to wear sweatshirts in Arizona, and right now, we're able to rock them until about 8am or so :) To be honest, I think the biggest reason I like them now is that Mckenna looks super cute in hers and Mandi looks like a total sexy, hottie in hers (I've always been a sucker for the didn't-do-anything-to-get-ready-but-put-on-sweats-and-I'm-still-super-hot look).

I'm thankful for tomato soup. Another thing that is nice as the weather cools down is soups and stews. Right now I'm really digging an organic tomato and spice soup I got from Costco. With a little bit of added salt and pepper, it really hits the spot!

I'm thankful for my Grandma Hiemstra. My step-dad's mom passed away last week at the age of 95. I have many found memories of her as a child. Her and Grandpa H used to come out every year and spend about a month with us. She was always willing to play and was a big help around the house. I'll miss you Grandma, but I know you are praising God right now and that's pretty cool!!

What about you? What are you thankful for today?

Can You Really Gain Back Lung Function?

Question from reader

Question: 

So I know I've read things in your blog and have heard stories of CFers who had lung functions in their 30s and somehow managed to get it all the way back up to the 50s, 60s or even 70s. I'm pretty sure I even saw that you yourself were down in the 30s at one point. Do you have any idea how people (or yourself) have gained so much lung function back? How many breathing treatments a day does it take? How many hours of exercise? How much of a miracle?

Last year I was training for a marathon with my lung function in the high 60s, doing great. In July, I ended up being rushed into emergency surgery for a bowel obstruction and twisted intestine and a month afterward my lung function plummeted to the 20s and 30s. A year later I still can't recover. My lung function is now 27% and I'm going next month to meet a transplant team. It's super disappointing to have your feet knocked out from under you like that and even more disappointing when I've quadrupled my breathing treatments, tried exercising my butt off, and prayed every night for a miracle to no avail. I know there's a point when you're lungs can't repair themselves, but I also just can't believe that could happen in ONE month after surgery. I'm just wondering if there is something else I could be doing that others have done.

Answer: 

Thank you for taking the time to send me an email. Hopefully I can help you in some way :)

Generally, the people I see bounce back from lower lung function are from 3 camps - 

1) Never took care of themselves, almost died and got scared into changing

2) Took okay care of themselves, got in a routine that didn't change much, slower decline and then finally realized that if they continued doing what they were doing they were going to die 

3) Took great care of themselves, hit a rough patch or a big event, sharp decline and then bounced back after changing a few things up.

There is of course other situations out there, but these are the three main ones that I see. There are also some who experience one or more of these situation during the course of their lifetime (If your curious, I was mainly #2). 

To answer your direct questions, it's generally increased breathing treatments and a regular, intense and consistent exercise regiment that gives people the best chance to bounce back. For me, it took 18 months of running 6 days a week and doing 4 treatment sets a day (4 to 6 hours devoted to CF care) for me to go from a 50% to a 75% (I went into the hospital in the 20's and after a week in ICU I blew a 31%). I've been able to maintain my 75% by doing 3 to 4 treatment sets a day and exercising 6 days a week for the last 3 years. I devote 1 to 2 hours a day to some type of exercise and/or physical activity.

It's funny that you mention the bowel obstruction as the catalyst for you to see a sharp decrease in lung function. One of my largest declines in lung function also came after a bowel obstruction and removal of part of my small intestine. I've been able to get most of that lung function back, but it's been over a decade (obviously a lot happened in the last ten years, and much of it was me not taking great care of myself, or as some people call it, college.)

With all of that said, here's my advice: Put yourself in the best position to succeed in and every day. Treat each day as a new day to be your absolute best and better than the person you were the day before. Don't get discouraged by the numbers. It's much more important how you feel. If you don't think you can push anymore, push harder. A lot of gain can be made during the time of resistance. Sleep is just as important as activity. This doesn't mean that you sleep the day away, but it does mean that you may not be able to have any late nights for a while. I always found that my best mucus clearing workouts came first thing in the morning as the sun was rising! If your aren't seeing the results you want, either by the way you feel or by the numbers, change up your routine (medications, exercises, treatments, breathing techniques, etc). And probably most importantly, never accept a place you don't want to be and never stop pushing until you hit your ceiling. How do you know you have hit your ceiling? You never will, so that means you're in this for the long haul. The only way I'll know that I maxed out is after I'm dead; know what I'm saying?

If you do what I outlined above, and you still don't see the results you'd like, that's okay! You'll still have your head held high because you know you gave it your best shot. Remember, failure only occurs when you don't try. If you try, no matter the result, you're a winner.   

Please let me know if you have anymore questions!!

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

If you have any questions that you'd like to send my way, please email me at ronnie@cysticlife.org!

Prayers for Strangers

(Mandi here - Even though it's not Monday)

I'm not quite sure why I'm writing this blog, but I feel inclined to, so I am.

Over the last several years, we have gotten connected to many CF families and patients. We feel drawn to others' whose stories are much like our own. We share tips, tricks, successes and challenges. We can show our lives very transparently to friends and family, but very few understand our life that are not walking in similar shoes. We have discussions about topics with our "CF friends" that others will never understand and quite frankly, discussions we never think to have with others. We discuss insurance, medications, life stresses and mortality in a completely different way than with anyone else. We joke about topics that most would cringe at the thought of. The way we think is wired entirely different than how others think, regardless of how much you try to explain it to people outside of the CF community. These friendships are pure blessings and bring pure joy.

Through a friend of ours in the CF community, I learned of another story. A story very different from ours, but potentially, one day, very similar (isn't it interesting how that works sometimes?). The husband was battling cancer. I checked in on their blog, their life and their struggles. In a weird, twisted, and probably (semi) unhealthy way, I placed myself in the wife's shoes. That may sound odd to many of you. But to some of the other CF wives reading this blog, I think I'm not alone in this rabbit trail. I often read a story of a dying spouse and watch how they are handling their struggles. I take mental notes of the admirable things they are doing. I watch their strength. I try to commit their actions and thoughts to memory. I try not to, but I get completely sucked in. I feel their feelings. I picture myself in those shoes, one day. I feel if I have studied the actions and attitudes of those who have walked that path successfully before me, I can walk my own path with more grace. I have checked in on this family and watched as they have all traveled their path so beautifully. The wife is a woman of true character and a faith that is breathtaking. Her attitude and answers to some of life's hardest questions are incredible.

Tonight my heart aches for this sweet family. Tonight the husband and daddy went to be with the Lord.  Again, I don't know why I feel compelled to write this blog and share their story (one that already has touched thousands upon thousands), but I do. I ask that you lift this family up in your prayers. Pray that they feel a peace that cannot be explained. Pray that tonight their house feels abundantly full of God's presence, in the absence of their husband and father.

You can read about their story here: http://hurstfamilyupdate.blogspot.com/

Thankful Thursday: Cooking Class & Grass

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 fun date nights. Last night Josh and Chrissy were nice enough to watch Mckenna, and Ronnie and I got out for a date night. Instead of the typical date of dinner or a movie or something, we decided to try taking a cooking class together. It was a blast, and we got to eat some yummy food to boot.

I'm thankful for good runs. My dad and I are still going strong in training for our marathon in January (did I mention I decided to train for one after we found our we are not preggo and decided to take a break?) Anyways, Saturday was a 12 miler and we both felt great. I'm thankful it feels good.

I'm thankful for snuggles. Mckenna has slept through the night for ages, but for some reason the last few naps and nights she's been waking up, crying, and seemingly off. I've been going in, thinking maybe it's a bad dream waking her or something, and giving her a quick snuggle before laying her back down (which does the trick and she's back out cold). While it's not awesome having your sleep interrupted, I wouldn't trade the few minutes of sleepy snuggles for anything!

Ronnie's List:

I'm thankful for grass. Our grass has been struggling in rather large areas during the summer, so I'm happy to see our winter rye starting to come in nice and thick to cover the entire yard. There's just something about a nice lush green lawn that does the soul good...and my wife loves it, so that's always a win!

I'm thankful for power washers. My neighbor let me borrow his power washer and now our sidewalks and back porch look brand new! Well, maybe not quite brand new, but that probably has more to do with the user and not the power washer. The power that that thing possesses is crazy!

I'm thankful for short airplane rides. Recently, I had a trip that required an 1h15m plane ride. It seemed like quite the luxury and probably the shortest flight I've had in quite some time. For some reason, I'm always flying to the east coast. I also got to sit behind a 9 month old who I kept entertained for almost the entire flight. It was fun!

What about you? What are you thankful for today?

Are You Honest With How You Feel??

Question from reader

I love when I get questions from the community and I always hope that my answer can help more than just the person asking the question. We all seem to undergo similar experiences in this life and I figure it can never hurt to share my own personal life experiences. 

Question:

I am meeting lots of new people who don't know anything about CF, or what that means in my daily life. I am very comfortable talking about what CF is and how it effects me, but I don't know how honest to be, and how best to explain it to people who don't know me well. To look at me you would never know (unless you saw me sick) that there is something "wrong" with me, so I find when I try to explain it, it's almost as if people don't quite believe me, or think I'm being overly dramatic about the time I put into breathing treatments, or how sick I can get. I don't know how to explain to my jogging buddy that I ran 2 miles with at 6:00am (feeling junky but not too bad) that by 9:00pm that same day, I was coughing up blood and had a fever of 104. I don't know what to say to a new mommy friend that I canceled a playdate with on Monday because I wasn't feeling well, that by Wednesday I had a PICC in and am now doing a full course of IV antibiotics. She, being a kind person, texted today (Friday) to see if I'm feeling all better, and the truthful answer is no. No I don't feel better, I actually feel worse. I can barely carry my baby up the stairs because it's that hard to breath. I'm exhausted because I've spent 2 whole days in and out of the hospital and hours in waiting rooms. But saying things like that freaks people out, and then they don't know what to say. However, pretending things are fine when they aren't isn't exactly a good option either for any kind of lasting friendship.

So how do you handle it? Where is the sweet spot between complete honesty, and pat answers like, "I'm getting better!"?

Answer:

The answer to your question is a tough one (as if you didn't already know that).

For me, I've rarely been totally flat out about how I feel with my friends and family. If I were to say "not great" or "pretty bad" I would always follow it up with "but I'll be alright" or "I just have to keep pushing". I've never wanted to put an unneeded burden on someone who really can't do anything to make me feel better. Sure they care, but they can't actually heal my lungs, do my medication for me or take my place in the hospital. I'm the only one that can do those things, so I've always internalized a lot of those different "I feel like crap" feelings.

In times that I feel helpless, I don't want to cause those around me to feel helpless as well.

Even with my now wife, I was very honest about what CF was, how it affects my body and what it could all potentially look like in the future, but I always quickly followed that up by, "but I'll work hard to make sure I'm always living the dream!".

Think about this too, will anybody around you ever really "get it" no matter what you say or how you say it? Probably not. The only people that could get it are others with CF or maybe other chronic illnesses. For me, I'd rather others in my life see me for my perseverance, positive attitude and faith in Jesus - than for something they will never be able to truly grasp.

Response: 

Thanks so much for getting back to me so quickly! That does help, and I think you are absolutely right. Thank you for affirming that for me, and for the encouragement to be positive. I am generally a very positive person, but this go 'round has been a little rough. I know you are right and so I will keep on, keeping on!

If, as a reader, you ever have a question for me, please never hesitate to send it along. You can send it via CysticLife, Facebook or my email address (ronnie@cysticlife.org)!

My Birthday Girl(s)

One year ago today.
I don't think either of you have grown :)

We have two special birthdays coming up in the Sharpe household...wait a second, one is already here...HAPPY BIRTHDAY MANDI!!!! We also have a birthday coming up tomorrow, but this blog is focused on my one and only. No, not Jezzabel, this is all about my beautifully stunning and incredibly sexy smart wife, Mandi.

Last year for your 26th birthday, I made a list of 26 things that I love about you. I wanted to do another list, but I couldn't come up with 27, sorry ;)

This year I thought I'd keep it simply and just tell you that there isn't anything that I don't love about you. I really wish there was. It's kind of annoying that I can't find a single thing that I don't dig about you. Seriously. I've always been able to pick out at least one thing I don't like about someone, that is, until I met you.

Do you know how hard it is not to give in to your every wish? All I want to do is make you happy. If there was something that annoyed me about you, I could always at least get some time to myself away from that thing. The thing is, the longer that we've been married, the more I want to be around you. The days that I'm away from you are stupid and I don't like them. (Picture me with arms crossed and a big pouty face right there)

Anyway, I love you. I should probably save some of the mushy stuff for your card in case anyone is reading this while trying to eat breakfast.

HAPPY BIRTHDAY HONEY!!! I LOVE YOU SO MUCH MORE THAN I DID WHEN YOU WERE JUST 26!

If You're Happy and You Know It...

...Clap your hands. (Clap. Clap)

I'm sure some of you are wondering how we're doing after the event's of last week, so I wanted to just post a little update.

As always, the Sharpe family is doing well and moving forward with happy hearts. Of course there were tears on Monday, but Tuesday we woke up with new attitudes and new outlooks. I have to admit, I even woke up feeling pretty free. It was nice to wake up and have no restrictions and no medications to be taking. Obviously being pregnant would have been preferred and I'll happily take restrictions and meds if that were the case, but that wasn't the reality and freedom is a second best for now! But overall, we just felt good that we had an answer (fellow IVFers, you know how that 2 weeks wait is!) and we're at peace knowing we're in the exact position we are meant to be in. It feels good to know that we are at the exact spot God has for our family and we are rejoicing in that.

And speaking of no restrictions and freedom, I've decided to use this break to do something I've always wanted to do: run a marathon. So I started training right after the phone call from the clinic. Anyone else run to clear your head? I'm pretty excited to train and finally check a marathon off of my bucket list. I'm all registered and a week into training for the Phoenix Rock n Roll marathon in January! It will be a great distraction and a great way to get into better shape before circling the wagons to try again.

Lastly, I'm feeling great about the timing of the failed cycle. Why? Welp, Mckenna's birthday is on Thursday, and what better way to move on from bad news than celebrating your baby's second birthday? Of course we love and cherish Mckenna every day, but celebrating her second birthday is a great way to really stop and take time to think back on how blessed we have been for the last two years and reminisce about the little blessing we currently have. I plan to spend the day spoiling her with hugs and kisses...which I'm sure she will love, although she will show me by saying, "No mommy!"....ohhh I love two-year-olds. Life with a kid seems to fly by. Hours turn into days, days into weeks, weeks into months. A birthday is a great reminder to breathe it in!

Anyways, I didn't have much to share, but wanted to let you know that we are doing well and moving forward joyfully and with contentment.

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

Thankful Thursday: Freedom & Access

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 bread machines. After paying $6 for a loaf of bread that didn't have chemicals and additives, I decided I should just make my own. So I've been making my own lately, and holy moly, it's awesome. Not only do I get to eat awesome bread, but a couple times a week I know what it's like to feel like an elderly woman in the 1920s (because those are the only people that made bread, right?)
I'm thankful for a sick toddler. Ok, I'm not thankful that Mckenna is sick, but I am thankful for the remind to appreciate good health.

I'm thankful for freedom. With the exception of one month, I've been on an IVF medication protocol for almost a year. As bummed out as I am that our last cycle didn't work, it does feel glorious to be done with shots, pills, and lozenges for awhile. I'm especially thrilled to be done with my progesterone shots because according to my nurse I have an insane amount of scar tissue from all the rounds that "must make these shots really painful".

I'm thankful for tea parties. Mckenna loves having tea parties lately and it melts my heart to watch her as she pours us both tea (water) and says, "cheers". It's also great for a laugh to watch her try to put a pinky out while she laughs!

Ronnie's List:

I'm thankful for access. I'm not talking about access to healthcare or internet access, I'm just talking about access to stores. It's amazing that we have the ability to get into our car, drive a mile or two, and be surrounded by stores that have the things that we need...and maybe more accurately, want. I needed a new file case this morning when my old one broke; A 5 minute drive later and I had one in hand. Amazing!

I'm thankful for the health to battle through sickness. I had clinic on Monday and of course did PFTs. I wasn't sure how they'd be since I had been battling back whatever Mckenna had for a good five days. I definitely wasn't sick like her, but I did have earaches, increased cough, increased sputum, etc. In June of this year I blew a 75%. On Monday, it was a 73%. I'll take it!!

I'm thankful for collaboration. One of the knocks I hear about people/organizations in the CF community is that there isn't enough collaboration. While this is true for some people and some organizations, this is certainly not true for me or CysticLife. I've been working for quite a while on something with some folks in the community that we're going to launch real soon, and I can't tell you how excited we are to see the response.

What about you? What are you thankful for today?

Question from Reader: When Cystic Fibrosis Impacts Our Relationships

As you guys know, I love answering questions on topics I have experience in. I've been blessed to have had many great relationships in my life, and now, I'm able to call the most awesomest girl on the planet MY WIFE (still can't believe it)! We all know that cystic fibrosis can impact our relationships - both positively and negatively. This particular question comes from a fellow fibro who was recently heart broken when his girlfriend of 6 months decided that CF, and the possible implications and impacts of the disease, was more than she could handle.

Hello Ronnie,

I have cystic fibrosis as well. You have been a huge inspiration to me both physically regarding CF and spiritually. I apologize for not introducing myself sooner.

However, the reason I am messaging you is because I have a broken heart. My girlfriend of 6 months told me this evening that she could not see herself marrying me because if we had children (through assisted fertilization) I might die before they get a chance to grow up. We have had that discussion  before and she was devastated but I thought she had come to accept it. For the last month or so she has been saying that we need to break up and she would never give me a reason and her actions contradicted her words of "we need to break up" because everything she does indicates she still wants to be with me. Tonight she finally broke down and told me its because she doesn't want kids to grow up without a dad and also the fact that intro vitro fertilization (sorry if I misspelled anything, my knowledge on the matter is limited) is so expensive.

Is it wrong of me to expect her to be okay with the unsure future? I'm devastated.

I have come to you seeking advice because I know you have been through this, you have a beautiful daughter, and your life example (through my perspective on Facebook) leads me to believe that  you have the experience to help me.

Sorry to hear about this [name withheld]. I can only share with you my own experience and hopefully it can help a bit.

Very early on in our dating life, Mandi caught me off guard by saying, "I wouldn't marry you unless I was totally comfortable with being a young widow."

I was shocked that she would even think about this, but, that's because I don't have an "outsiders" perspective, and frankly, I'm a man. We men generally don't think for the future, we think for the present. Women on the other hand are wired a completely different way.

It takes a very special woman to commit their lives to a man with CF. Our life is simply different. There are sacrifices we have to make as a couple that no other couple has to worry about. And, there is the prospective of an untimely death that would leave them all by themselves for an undetermined amount of time.

So, to answer your question - Yes, it is wrong of you to expect her to be comfortable with being a young widow and/or a single mother. Most girls won't be comfortable with that. Is it a reality that it could happen? Sure. Are we planning on it? Absolutely not!!

Her worry about IVF being expensive is just noise and her grasping at straws. You can figure out the money part.

I'd be thankful that this is only coming down at 6 months into the relationship. I understand that the pain is real, the hurt is real and you're not feeling great, but it could have been much worse. Imagine if you were engaged when she realized this?

Sometimes, God places something on the heart of the girl who is wrong for us. The wrong girl needs to be out of the picture before the right girl can enter it.

One week before I met my future wife, my girlfriend and I of over 2 years broke-up. I wasn't happy about it at the time. But, looking back, I thank the Lord that He ended that relationship when He did.

Hope this helps and please let me know if you have any questions or comments.

We're Not Pregnant

...Well now that that's out on the table, I should explain...

We said we would give IVF updates when it felt right, and well, now seems like a good time. Since our break early in the summer, we got back on the wagon. We did a frozen cycle. A similar protocol to another we had done with an added medication. Thankfully, this time we actually made it to transfer, which we are really thankful for (what a blessing to have found a protocol that works for us). We transferred two perfect-looking, little loves on Friday, September 27^th.

Unfortunately we learned today that it didn’t work and we are not pregnant.

It is tough news to hear. There have been a lot of tears. It is hard to devout your life to trying to have another baby for nearly a year and to again get devastating news. It makes me sad. It adds to the fear that this may not work for us again. It brings the realization that I may never carry a baby again closer. It breaks my heart to know I may never feel little kicks again. It makes me regret not committing those last few kicks from Mckenna to memory a little more. All of those things flood my head as I consider the fact that we have now used 4 of our 6 embryos, and that we are running out of chances. It hurts.

Yesterday at church we had a guest singer, JJ Heller. She’s a Christian artist who is phenomenal. JJ Heller is a favorite of ours. I actually labored with Mckenna with her music on in the room, and Mckenna was born with it playing in the background. In the first weeks and months of Mckenna’s life I endlessly listened to and sang her song “I Get to be the One”…about the blessing of getting to be the one to raise your child. Yesterday she was at our church for the first time in years singing a song of hers I had never heard before called “Who You Are”. When she started singing, I started crying. The song starts, “all she wanted, was a baby to hold…” I lost it. Knowing my test was today, and knowing that God had her at our church yesterday, I knew this was a song for me. The song continues, “…she’s praying, ‘I don’t know, I don’t know what you’re doing, but I know who you are.”

There are no truer words. As the song says, “sometimes life doesn’t make any sense.” Sometimes we don’t understand our circumstances. Sometimes we wish we knew why. But I realized today, my job isn’t to know the why. I will never know some of the whys in my life. And that needs to be ok. The only thing I need to know is who my God is. And my God is ALWAYS good. The only thing I need to focus on in this situation is Romans 8:28:

“And we know that in all things God works for the good of those who love him, and who have been called according to his purpose.”

So while my mind wants to race to the why’s of the past, the pain of the present, and the possibilities of the future, I am choosing to still my thoughts and pray, “I don’t know what you’re doing, but I know who you are.”

As for our plans moving forward, we need a break before trying one last time with our remaining two embryos. I don’t know how long we will wait. I’m hoping sometime in the next months or year, there will be a time that just feels right.

But to end this blog on a lighter note,  I leave you with a break-up letter I’ve written to IVF:

Dear Invitro Fertilization –

We need to talk. Please know what I’m about to say is out of love, and it will probably hurt me more than it will hurt you, but it has to be said.

I need a break.

It’s not you, it’s me. We’ve been back together for 11 months, and well, we just aren’t working right now. And please hear me when I say it’s not you. You are great. I love and respect you. You are so good, and I’m constantly amazed by you. But we just aren’t good for each other right now. Over the last 11 months, you’ve driven me crazy. When we’re together, I’m always weepy, emotional, and snappy. And honestly, I need a break from all the drama you bring into my life.

And this isn’t a break up…but a break. I need some space for awhile. I love you. Afterall, we have one child together. Let’s take this time to improve ourselves. You get better at all that you do, and I will take this time to focus on me. I want to train for new things, lose some of this fluff you’ve helped me gain, and most of all, get back to my normal self mentally and emotionally.

This isn’t goodbye, it’s see you later…

Thankful Thursday: Sick Toddler & Spontaneous Outings

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 nights out with my hubby and parents. Last night Ronnie, my parents, and I went to a John Mayer concert. I love John Mayer and LOVE time with my hubby and parents.

I'm thankful for a sick toddler. Ok, I'm not thankful that Mckenna is sick, but I am thankful for the remind to appreciate good health.

I'm thankful for TV. There, I said it. I'm thankful for TV and the ability to use it as a babysitter for short little periods when I need a quick break or a distraction while I need to get something done. Does that make me a bad mom? Umm, I don't think so - I'm not putting on Saw or Chuckie :)

Ronnie's List:

I'm thankful for a healthy baby. Mckenna is sick right now, and it makes me appreciate the times she's healthy even more. Not that she isn't being a trooper, she is, but I'd rather her feel well :) She's coughing up a storm until the point that she throws-up and keeps saying, "Mckenna sick, no gym" (she can't go to gym childcare sick). She's so sweet.

I'm thankful for spontaneous outings. My father-in-law and mother-in-law invited Mandi and I to the John Mayer concert last night and we had a blast. I'm not the biggest JM fan in the world, but I do like his style and of course I know his classics. Phil Phillips opened up, which was cool, because I'm a big American Idol fan.

I'm thankful for support. I know I've mentioned this one before, but I don't know how people make it without a supportive spouse. I'm thankful that Mandi supports me even when it's not ideal for her and I have another one of my crazy ideas/hobbies/projects/careers that I'd like to start (THANKS BOO!!!!).

What about you? What are you thankful for today?

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.