Monday, December 23, 2013

Confessions of a Selfish Wife

Well happy Monday, right?! The title sounds a bit extreme. "It's the holidays…where's the merriness?" You may be thinking. Don't worry, this post won't be as depressing as that title leads you to believe ;-) This post may be a bit heavy for two days before Christmas, but it's timely in our lives right now, so here you have it.

Ronnie's hospital stay is coming to an end. We are so close I can taste it. It's been a decently long stay (3 weeks exactly). It's actually been a pretty good tune-up all around (I'll post more on what Mckenna and I did to keep busy in another post or this one will ramble even more than normal…I know, seems impossible to ramble even more, doesn't it?! Trust me, I can go all day). Anyways, the stay has been pretty good. I think it's been the best one since Mckenna was born. She was good. We kept busy. I kept my sanity. All in all…a win.

During the stay, I got a message from a girl with CF. She is also battling a flare up and is having a harder than usual time getting back up to par. She has a boyfriend. He is usually good at handling her CF, but this time she wasn't getting as much as she needed from him. He was indifferent to her feelings during this time and not opening up. She wrote me asking: "So I guess my question is, how have you and Ronnie had a successful marriage?"

Talk about a doozy, right? I answered her the only way I knew how: honestly. My response boiled down to this…we have a successful marriage, but that doesn't mean I don't suck as a wife from time to time (more often than I like to admit). And not that you're asking, but I'll tell you anyways, here's what I think about successful CF relationships.

CF spouses are people first. I think sometimes we forget this. We all do. CF patients and spouses alike. We are often told, "oh you're so special" for marrying someone with CF. And sometimes we allow those sentiments to change our expectations of ourselves. In reality, we aren't special. We are human. We fell in love with someone with CF, and we went with it. Sure the lifestyle is a little different, but CF spouses aren't the only people that fall in love and sign up for a life that's a little different. In fact, most couples and families have some sort of "challenge" that they "sign up for"…a spouse that travels a lot, a spouse in the military, a spouse that's ugly (haha that one was a really bad joke..I kid. I kid). Anyways, back to my point. The point is, we are just people. And when there are conflicts in a CF relationship, we sometimes bring CF into the mix, when really if we just took CF out of it and just looked at the person or the issue, it would be a different story. For example, in the case of the girl that messaged me. She was concerned that he wouldn't listen to her fears about CF and wouldn't open up. In a CF relationship, and because it has to do with CF, we may blow this up. We wonder, "does this mean he can't handle a life with me? Can he not handle CF?" When sometimes it's as simple as this. He's just a person. He's just a guy. Most guys suck at discussing feelings and would rather rip out their fingernails one by one than sit and talk about their own feelings. When he doesn't listen to feelings about school or work, we don't think anything of it. We give him a free pass and let him play the "honey, I'm a guy" card. We allow him to say, "unless you give me something to fix…let's not discuss it." (Anyone else's husband operate this way?! Unless Ronnie can fix it, he doesn't really want to discuss the what ifs and hear all my hims and haws. I bore him with them anyways, but I know he doesn't really want to hear them). But because it has to do with CF, we sometimes think too seriously about things that may otherwise go unnoticed.

Do I think we shouldn't strive to be extraordinary spouses? No. I think we should always strive to be better. But, ultimately, we are just human. We experience the same less-than-heroic-thoughts that everyone has. Which brings me to my second point: I'm a selfish wife.

Woah… it just got real, y'all!

Here's the truth: my husband sugar coats me in his own mind. We have a great marriage, but I'm not 2013's Wife of the Year. Ronnie thinks I'm the best wife in the world because he loves me, but I suck most of the time. Most of us share the good and keep private the bad (thanks for that, honey!) But I realized in reading her message that we've maybe perpetuated the high expectations for CF spouses through what we share (or more accurately, don't share). I think we only hear the highlights in some CF couples' relationships, and then it leaves younger CF patients looking for this perfect person to spend their life with. When in reality, you'll never find someone perfect to marry, CF or not. You'll just find someone perfect for you. Whoever we marry will always just be a person. All people are flawed and no one is perfect.

I'm a great CF spouse, but I'm still selfish in my marriage sometimes, even in our "CF life." I am 100% ok with Ronnie's CF. I view CF as a blessing. I embrace the life we have. I think, quite frankly, we probably have one of the best lives around. We are extremely blessed, and I wouldn't change a thing about the life we have. If there's someone that is cut out for the CF life…it's me. To an outsider looking in, I could see exactly where her question originates. If you only see the highlights, I can see why there would be nerves about, "have I found someone cut out for this? Some people seem to be more ok with it." But in reality I am human, and honestly, I am selfish. We have a successful marriage, but not because I am always a successful spouse. The week before Ronnie went in, I knew he didn't feel good. But he had been sleeping in every morning (because he didn't feel great) and one morning I was exhausted, so I just made him get up. I didn't care how he felt that morning, I felt like I needed sleep more. His last hospital stay I hounded him endlessly about when he was getting out because I had about had it being a "single mom". I sometimes wish I had something I had to do to buy me 45 minutes of alone time when Mckenna is being a pill. Some hard days alone with Mckenna during a tune-up I have even felt a little resentful that Ronnie is just "relaxing" while I'm running around like an idiot all day trying to maintain my cool (I should note, that the more rational me knows he's not "relaxing" and that it's hard work and he feels like crap and would rather be home. But the me that's fighting a two year old in a battle over something ridiculous isn't rational! HA!) Ronnie gets out today and my first thought isn't, "oh good, he's all better and feeling great." Instead my initial thought is, "oh good, I need a break…" I know those little tidbits are less than flattering. But I think they need to be shared more often, possibly. Even those of us who are totally ok with CF; those of us who love taking care of their spouse; and those of us who wouldn't change their lives for anything, have their moments. I was made for this life. I was made to be Ronnie's wife. But I am human. And I have selfish moments.

I think it's important to realize there's a difference between being a CF spouse and being human. I think we need to separate CF from most aspects of our relationships. I think we need to not blow things out of proportion just because they have to do with CF. I think we need to teach younger people that successful marriages are always between two imperfect people. I think we need to allow ourselves and our spouses to be imperfect. I think we need to be honest about how we feel, even when it's not flattering so that others understand what marriage is truly like. I think we need to help others learn what they can expect from a spouse and what they should look for in a spouse. I was so thankful for her note. I think dialogues should happen way more often regarding CF relationships. And I think we all need to cut ourselves some slack!

Thursday, December 19, 2013

Thankful Thursday: Hospital Team & One-on-One Time

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 taking the day off as Mckenna and her make the trip up to Polar Express!!

Ronnie's List:

I'm thankful for the support of a comprehensive hospital team (hospitalists, nurses, pulm. doctors, RTs, etc). I've had a fairly normal stay here in the Hole and after two-weeks, I was at my lung function goal. The problem was that I still didn't feel up to par. It felt like I was still fighting off something. I expressed this to my team who then in turn changed up my meds a bit a will give me some extra time in here to see if it helps. I know many others in the community who get kicked out of the hospital the minute they're close to their "baseline". Some even get pressured to leave far before they're ready. I'm just extremely  thankful that my team seems to care about my health, well being and life as much as I do.

I'm thankful for water. We all know how important it is to keep our kidneys flushed when we have this poison, I mean antibiotics, running through our system. I've had some creatinine issues in the past, so this is of even greater importance for me. I'm not sure how much I'm drinking, but it's probably safe to say it's somewhere between 100 and 200 ounces a day.  

I'm thankful for special moments. When Mckenna and Mandi came down yesterday to hang with Daddy, Mckenna and I got some special one-on-one time while Mandi went for her run. We were able to have a special lunch together and then snuggled together for her afternoon nap. Being snuggled up to her during her nap is one of the things I enjoy most. 

What about you? What are you thankful for today?

Thursday, December 12, 2013

Thankful Thursday: Grammy & Steady Improvement

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 my Grammy. It's been so wonderful to spend time with my Grammy these last few days. There's nothing better than a chosen friendship that blossoms out of a grandmother-granddaughter relationship. I'm so thankful for the wisdom and joy she's shared with me all these years.

I'm thankful for good sleep. Toddler sleep while traveling can be iffy, but Mckenna has transitioned to the new timezone perfectly and has been sleeping like a rockstar!

I'm thankful for a willing hubby. I'm thankful that Ronnie is always willing to check himself in for a tune-up when he needs it. I know he's healthier for it and I'd kinda like him to be around for awhile…ok…forever ;-)

Ronnie's List:

I'm thankful for FaceTime. Apple sure did figure out a way to make these hospital stays easier. I'm able to see the beautiful faces of my wife and daughter multiple times a day even though we're not in the same area code. Mckenna loves to hug the phone and get kisses from her Daddy, which of course melts my heart every time. 

I'm thankful for steady improvement. So far, I have been able to steadily improve while in the Hole. I've had a couple of days that the improvement wasn't all that big, but it sure beats declining. I really appreciate the patience of my CF team to allow me the time it takes to get better in here!! 

I'm thankful for the IPV. Most people don't like the idea of something blasting air into your lungs, but for me, it's quite the treat when I come into the Hole. It always feels like air is going to places that it hasn't been in a while :) 

What about you? What are you thankful for today?

Wednesday, December 11, 2013

What Brought Me Into The Hole

The last time I was in the Hole for a tune-up was in May. I left after a 25 or so day stay blowing a 73% (with a "baseline" of 75%), but feeling ready to get back to kicking booty. I then had a follow-up appointment about a month later where I blew a 75%. It was at this appointment I set up another clinic visit for roughly 6 months out, on January 6th. I made it my mental goal of trying to stay out of the hospital until then, which would have been a record length of time in-between stays.

Shortly thereafter, I started on an unnamed clinical trial for my specific gene mutation, DDF508.

Since getting out of the Hole in May, I have felt great! My workouts have gone very, very well and I definitely felt more energy throughout the day than I normally do. My mucus seemed very "watery" and I was able to expel it somewhat easily. My breaths were deep and I was moving large amounts of air with each one that I took.

I had very few bumps in the road since getting out in May. A cold here or a sore throat there, but they would last for a day or two at most. I was feeling very good about my January 6th goal.

Things started to change about two weeks before Thanksgiving. I started to slow down. I wasn't feeling bad, just not quite as good as I had before. Still, I was firing at about 90%. I think the biggest factor that led to this slow decline was an injury to my foot. There were days that I wasn't able to put weight on my foot, and therefore, was not able to complete my usual workouts. Not being able to complete my normal workouts is what probably opened the door for CF to outwork me.

You see, I'm convinced that my CF works at the same level, let's just call it level 75, all of the time. It's up to me to work at a level 76 or higher every single day if I want to stay ahead of it. There's no doubt that not being able to complete, or even attempt my workouts, brought me under the 75 level. I know that sounds overly simplified, but you know what, it works for me, so...

Anyway, after a couple of weeks of working below my regular level (mind you that my treatment time didn't decrease, but actually increased in trying to "make-up" for lack of exercise time), I started to feel "off". My coughing increased. My mucus got thicker. My sleep felt interrupted. My energy level decreased. You know, the same old song and dance. I would have 1 good day for every 2 sub-par days. During this time, Mandi and Mckenna were both battling a stomach flu type of thing, so part of me was hoping that my decline was due to fighting their sickness off. If that was the case, I thought, I may be able to make it until January.

That was not the case.

After about 10 days of a slow decline with increased symptoms, I waived the white flag and called in the cavalry. When I finally made it into clinic, I blew a 63%. Not terrible, but not where I need to be. And more important than the number, I wasn't firing on all cylinders and we were all convinced that without intervention, we would continue to watch a slow decline, or quite possibly, a fast one. So, after over 6 months out of the joint, I got booked back in (which by the way, is a longer parole than normal).

It's been 8 full days of antibiotics. After 7 full days, I blew a 69%. I'll take it. It isn't uncommon for me to have no increase or even a slight decrease my first full week. More importantly, I'm feeling better than when I came in, and am looking forward to what this next week brings.

Tuesday, December 10, 2013

Travel Success

Mckenna and I decided to pack our bags for sunny Florida for part of Ronnie's hospital stay this go 'round. At this point in our lives, one of my biggest jobs surrounding Ronnie's CF is to make sure I'm molding Mckenna's perception of his CF, and our "CF life" properly. Some of it will come by just watching and listening to us, while some of it can constructed. I work hard to watch how I phrase things about his stay. We talk about how blessed we are that daddy can go into the hospital; that he has good doctors; that there's medicine that makes him feel better. We talk about all the fun things he may be doing. When she says she misses him, I tell her I miss him too but that I feel so happy that he can be there getting better and we can spend mommy and Mckenna time. We usually end the chat with a fist pound and a cheer for girl time.

Ronnie's last stay I did a lot of fun adventures around town. I decided the best way to have her think hospital stays were a good thing, was to actually make them a good thing…by making them fun for us. You know...see new things, get away with a little bit more, eat ice cream or breakfast for dinner here and there. This time around I decided a vacation to see my Grammy for just the two of us was in order. So, as soon as Ronnie knew it was time, we booked tickets. I had my Grammy in a holding pattern, and let her know we were coming (all of a week in advance, sorry Gram for the short notice!) I decided to fly in and out of Orlando to get a direct flight to make things a little easier, and tack on a short trip to Disney (if Mickey doesn't scream a good time, I don't know what will).

We packed our bags and left yesterday. I knew flying alone with a 2 year old may be the best idea or the worst idea I've ever had. The trip was full of firsts for me. I had never driven myself to an airport and parked; never flown alone with Mckenna; never rented a car with her alone; you name it. I was a little anxious, but I decided I better suck it up and get out of my comfort zone (this whole trip is that way for me). I left extra time because I knew everything would take longer and just decided not to rush things. I knew she'd want to stop and push buttons, look at people, ride the elevator an extra time. And I knew rushing her would only stress me out, and she would continue to go the same pace! HA!

The day went off without a hitch. We had fun. She was busy on the plane, but she napped some, played some, and was rather patient. She did a great job.

We will see how this trip plays out, but it may end up being a blessing for both of us. My goal was to liven up hospital stays and help shape her little thoughts around them in a way that would make future stays easiest on all of us. But it may just end up being a healthy growing opportunity for me in the meantime. I'm a big believer in getting out of your comfort zone, especially for someone like me…a worry wart. So three cheers for another unforeseen blessing of hospital stays!

Thursday, December 5, 2013

Thankful Thursday: Forced Change & Adult CF Doc

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 forced change. With Ronnie in the hospital we are forced to change things up a bit. Flying solo all day each day with Mckenna forces me to get creative. The result? Chasing sunrises. Each morning we have jumped in the car or stroller and "chased the sunrise". Mckenna believes we are going to the edge of the earth (I may or may not have led her to believe that). We get out and admire the sky. "God made that!" She exclaims each morning with delight. "Kenna sleep. Then wake up. God made that!" I haven't let on the order of events actually went: God made that, lots and lots of time elapsed, Kenna born, Kenna sleep, Kenna wake up, it's still there. I'm also waiting to break the news that the edge of the earth is actually just down the block and the earth is round.

I'm thankful for the joy children unknowingly spread. My grandpa is trying out living here for a month. We went to his retirement home yesterday afternoon for a visit. I knew it would brighten his day. I knew it would likely make some of his neighbors smile. I didn't realize, however, just how much joy it would bring some of them. One woman in the hall that stopped to chat said, "oh my mother loves babies". I offered to pay her mother a visit. The women led us to her mother...Who was in some locked down area in the (lack of) memory wing. There we met Miss Barbara. With tears in her eyes she told us we "made her life" (maybe an exaggeration, but incredible none the less). She asked us not to leave and obviously didn't want to let go of Mckenna's hand. After chatting for a few minutes and me having Mckenna perform like a seal, Mckenna gave Miss Barbara a hug and she cried again. I have a feeling we will be visiting Miss Barbara frequently. Funny how kids can provide so much joy and never know it.

I'm thankful for ding dong ditch. Mckenna is doing a random act of kindness each day (like an advent calendar but with random acts). Yesterday we made cookies for our neighbor, "uncle rob". Teaching the art of ringing and running was simply hilarious and endearing. To hear Mckenna recount how we did it is priceless. I'm thankful I get to teach her things like that.

Ronnie's List:

I'm thankful for a new adult CF doc who is as proactive as I am. Just recently, a new doc who actually wants to take care of with adults with CF started at my hospital. She seems very eager to learn, and more importantly, gives credit to the patient for knowing their disease and wants to learn from them. She's been involved with medicine for a long time and just recently got involved in the CF space. I look forward to working with her.

I'm thankful for direct streaming online. The Hole doesn't have all of the channels that I'm used to watching at home (namely, channels that the Wildcats play on), but thanks to online streaming, I don't have to miss a game. Quality isn't as good, but it's certainly better than missing the entire thing!!

I'm thankful for a daughter who still thinks of Daddy when I'm away. That's all.

What about you? What are you thankful for today?

Tuesday, December 3, 2013

We Went Dark!

We went dark! Whoopsie daisy! We got so caught up in being thankful over the Thanksgiving long weekend that we forget to get online and share life with all of you. Have no fear, we are back now, to bore you more than over :)

We filled the holiday weekend with friends and family. It was glorious. There is no better time spent than with the people we love. Some of the highlights of the weekend include:

- Spending Thanksgiving with both of our families. We split Thanksgiving this year. We had one meal with Ronnie's extended family…all the aunts, cousins, siblings, etc. Just as we usually do. And as per usual, it was amazing. We then headed to my parents' house to spend the evening with my brother and sister in law, my parents, and my sister in law's parents. This was a rare treat. My parents have been living in Asia for the last 5 Thanksgivings, so I haven't gotten to share Thanksgiving with them. It was a great reminder of what a blessing it is to have them back in Arizona full time.
- Spending time with friends. On Saturday we spent the afternoon and evening with one of Ronnie's childhood friends and his wife and son. It was so much fun to catch up with them and to watch Mckenna play with their son. They are great people, amazing friends and incredible parents. Time with that is such a joy and we really need to spend more time together.
- And lastly, but perhaps most incredible, my grand father is now in Arizona as of yesterday. He has lived in Lancaster, PA for the last…well…forever. And he's now our in Arizona to see if he'd like to move out here. Right now he is giving it a go for a month, but if we play our cards right, we may be blessed to have one of the most amazing men in the world living close by. He is such an incredible man and is such a great grandpa, that I would love Mckenna to get to know him even better by having him close by. We will see if he decides to stay for good, but for now, I'm just thankful for a month with him!

Thanksgiving is such a great time to sit back and think about all that we are blessed with. The holiday season in general is a great time of reflection and appreciation. I for one am so excited that the holiday season is upon us and so thankful for all that we have been blessed with this year!

Wednesday, November 27, 2013

Very Good CF Awareness Video

Tuesday, November 26, 2013

He Said, She Said: The Day We Met

After being reminded by my wonderful mother-in-law about the first time they ever heard me mentioned, I thought I would write up a quick blog about how Mandi and I met.

On June 27th, 2008 I got a call from a friend about meeting up with the group for a movie and some drinks. I politely declined as I was determined to spend the next few months holed up in my house and have no resemblance of a social life. Well, I guess you need the backstory on that...

Just one week prior, my girlfriend of over two years and I decided that it would be best to go our separate ways. We had a good relationship, no real issues to speak of, but we knew that it was not a forever type of a thing and continuing the relationship would be futile. I was more sad about losing a friend and someone I enjoyed hanging out with than I was about losing a girlfriend. 

After breaking-up, I did a lot of soul-searching and praying and something became very clear to me - I wasn't dating the way God would want me to date and I wasn't dating the type of girls God would want me to date. It's very clear that God wants us to be equally yoked, meaning that both the man and the woman are going in the same direction towards the same God. Even though I had been a part of the church my entire life and had been in relationship with Jesus since my youth, I had yet to date or be in relationship with someone I was equally yoked with. I dated plenty of nice girls, just never the right girl. Ultimately, I knew that if I wanted a life-long successful marriage I would have to find a woman who was in-love with Jesus as much as I was.

I vividly remember humbling myself before God and asking for forgiveness by the way I had been dating. I knew I wasn't dating His way. I also knew that if I ever wanted true success, I would have to date His way. 

And now back to June I declined to meet up with my friends that day because I had a history of not being able to be social, without meeting someone. I know that sounds stupid, but I very rarely had no one around. I pretty much had a girlfriend, someone I was "dating" or "just a friend" from 1994 to June 2008. I was pretty sure that being alone for a while was exactly what God wanted me to do. Well, He of course had different plans.

After repeated calls and requests from my friends that day, I finally said "yes" to going to the movie after I was promised that I could show up when the movie started and leave when it was finished. Sounded pretty harmless to me, and since you can't talk through a movie, I figured I was in the clear.

I showed up to the movie theater with about 5 minutes to spare and found my friends who were already sitting in their seats. I gave the obligatory wave and hello and sat down next to my buddy Bryan at the end of the row. I knew everyone who was there, except I couldn't quite pinpoint who the girl sitting next to Bryan was. I had met her before, but only briefly and had no idea what her name was. Being the gentleman that I am, I introduced myself to which she responded, "I'm Mandi and we're going to get married one day." Just kidding. She just told me her name and reminded me that she was Bryan's roommate's little sister.

I honestly don't remember if Mandi and I talked before the movie started, but I do know that she laughed at basically anything I said to the group or to Bryan. At the very least, I was happy to have her around because I'm pretty sure my friends were tired of my jokes. In my mind, anyone who made me feel like I was funny deserved a spot in the group :) 

After the movie was done (I have no idea what movie it was), I decided to join my friends at a little wine lounge close to the movie theater. 

To be continued...

Ronnie decided a he said-she said was in order after a little discussion unfolded on a picture he posted on Facebook. The picture was of how hideous his face was the first 6 months we dated. HA! I kid…eh actually I’m not kidding. It was ridiculous. But the conversation wasn’t really about that. It was between my mom and Ronnie about what in the world they must have been thinking the weekend we met. Ronnie and my parents got off to a “rocky start” (kind of, not really)…and Ronnie thought it’d be good to share the happenings of that first weekend. To really spice things up, we should ask my mom and dad to each write their accounts of that weekend. Hm, now that I think about it…that may be needed.

So, onto that first weekend. And apparently, I’ve just been informed just that first night…for now.

June 27th, 2008th I was home for the summer. I went to school at Syracuse University, but my parents and brother all lived in Arizona, so that’s where I spent my breaks.

My parents moved to Arizona after my freshman year of college and my brother happened to get a job here after he graduated from Penn State. I didn’t know anyone here, but since my brother lived here and had made friends, I tagged along with him. His friends soon became my friends. My brother is an incredible guy. I always loved him when we were younger, but as I grew up, I learned to appreciate my brother even more. He’s a man of incredible character. He is endlessly funny. He is compassionate and fun to be around. He is his own person. He always has been. What you see is what you get when it comes to Josh. It is probably his most endearing quality. He is a social guy, but not a guy to hang out with people just for the sake of being with people. He has always been the type to hold friends near and carefully select who he spends a bulk of his time with. I knew anyone he chose to surround himself with would be a person that was worthy of friendship. In a way, he did all the work for me. I would come home from college and knew that I was spending my days with some of the best people to be found in Phoenix. He doesn’t know this, but one of my favorite parts about college breaks was the fact that I would come home, and get to spend time with my brother in a way I never had before. I got to spend time with my brother as my friend. It completely transformed our relationship in a way I cherish. But anyways, that’s not the point of this blog, I can love on him in another blog. The point is, I came home from college and hung out with my brother and my brother’s friends…who I knew must be good people if Josh was choosing to spend time with them. Fast forward…

That Friday night, June 27th, we decided to go to a movie. It was my brother, my brother’s then roommate, Bryan, and maybe one other friend (how’s that for memory?) Bryan mentioned that maybe one other friend of his would be joining us. We saved a seat for him…whoever he was. I didn’t recognize the name, but figured if he was friends with my brother’s friends, he must be a cool guy. Bryan’s friend showed up after the previews started. He sat down next to Bryan, who was sitting next to me. Killing time waiting for the movie to start, he began chatting with all of us. For some reason he was throwing out brainteasers, not my strongest area. I kept my mouth shut. My genius brother (I am not being sarcastic, he’s really smart…), on the other hand, ate them up. Bryan’s friend cracked jokes as the conversation unfolded. He was funny. Really funny. “What was his name again?” I thought. I hadn’t really paid much attention, until he opened his mouth and was one of the funniest people I had ever met. I love a sense of humor. Every girl has an Achilles heel when it comes to guys. For some it’s looks, for others it’s money…for me, it’s a sense of humor. If you can make me laugh, you are a winner in my book. I’ve dated guys about as varied as you can find…some short, some tall, some rich, some poor, some smart, some really, really, really dumb (yes, it was that bad). But they all were funny. So anyways, as soon as I realized how funny he was, I took notice. It was too dark to really tell much else about him. I couldn’t really tell if he was tall or short; he was sitting. I couldn’t tell if he was good looking or ugly; it was dark. But he was funny. I got nervous. Really nervous. I’m not sure why, but I clammed up and was afraid to talk because I didn’t want to make a stupid joke. I’m not not funny, but I’m not the funniest person you’ll ever meet, which means I fall right in the sweet spot where I make a lot of really, really, not-funny-at-all jokes. And I’m cool with that. I own it…once I know someone. But this guy was really, really funny. Really, really funny people hate stupid jokes. So I shut up.

….then the movie started. 

To be continued...

Monday, November 25, 2013

Thank You Germ Factory

Nothing is new in the Sharpe household, so I will just ramble about small happenings this weekend.

On Friday morning Mckenna refused to eat breakfast. Not a bite. I thought perhaps she was trying to hurry breakfast along because I told her we could play in the rain after breakfast - it never rains, so we are excited and fascinated with rain. Anyways, it was raining and I opened the door so we could see it and hear it. But that wasn't good enough. After she sat without eating for a while, I said we could be all done with breakfast for a bit and go play in the rain. "Mommy go?" she asked. I was hoping she wouldn't ask. It was cold out. But I knew she wanted a playmate. "Sure. Mommy will come too." I didn't really want to worry about peeling off soaking wet clothes, so I stripped us both down to our skivvies before heading into the backyard (yes, we were both in our underwear in the rain, you have now been warned to not show up to our house unannounced). A bit of an embarrassing fact to share, but this move would prove to be a life saver in about 10 minutes. We ran around for a few minutes before Mckenna finally agreed that it was a bit too chilly to play in the rain. So we came back inside. I got her wrapped in a towel and popped a piece of egg into her mouth. "My tummy hurts," she said after swallowing. She then proceeded to vomit all over me, the kitchen counter, and the floor. It was at that moment I understood why she didn't eat breakfast and I felt pretty thrilled about the decision to strip us both down prior to heading outside. We just both jumped in the shower to hose off. Mckenna was a little off Friday, but as kids do, she bounced right back. I assumed it was a fluke.

Saturday, I had a long run scheduled. My dad and I met up and headed out for our 17-miler. It was a fairly uneventful 2.5 hours. I headed home feeling sweaty, accomplished, and ready for a bath. I took a bath and a shower, and headed out to the family room to snuggle up and watch a movie with Mckenna. As I laid there, my stomach started getting uneasy. I thought perhaps I hadn't had enough to eat or drink and that my stomach was fighting back after jostling for so long. I tried to eat toast and drink some water, but it started to build. The nausea got worse. It became obvious that Mckenna's episode the day before wasn't a fluke. That little germ factory is such a good little sharer, I tell you. For the next 10 hours I couldn't keep food or liquids down. By bedtime I was so stinkin' thirsty I wanted to cry. I knew I was probably really dehydrated since I had run for so long and hadn't really kept any liquids down since I had finished. "I will never take water for granted again," I told Ronnie in my desperation for a drink. I went to bed and woke up around 11:30 to try to drink again. Thankfully I was able to keep liquid down through the night and woke up feeling a lot better.

Ronnie is now waiting for his turn, but it's looks like he maybe escaped this one. I can tell he's choosing his meals wisely though…in case he gets to enjoy them twice!

That was our weekend in a nutshell. I know, it was pretty exciting and totally worthy of sharing. Now that you're bored to tears, you may go. I apologize for those 10 minutes you spent reading this that you'll never get back.

Thursday, November 21, 2013

Thankful Thursday: Shared Moments & Flexibility

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 inspiration. During a race it is easy to drown out everything around you, turn off your brain, and just focus on yourself. But during my race on Sunday, as I headed up a hill during mile 10, I looked up to see a dad pushing a strolling with his son (I assumed) in it. His son looked to be about 6, and he had no legs and what looked to be only half of each arm. Both the dad and son had huge smiles on their faces. I smiled. In that moment I couldn't help but smile. I was certain there was a greater purpose in the dad's running since his son came into this world. I imagined them training together. I smiled thinking that running is a passion they shared, though they experience it two different ways. I ran the last few miles with more appreciation and determination than I would have had I not seen them. (I should also mention they were way ahead of me...that dad can run FAST even pushing a stroller!)

I'm thankful for shared moments. Mckenna has little things she does with Ronnie and little things she does with me. One of my favorite mommy-Mckenna things is when I say "Mckenna, look in mommy's eyes," she stops everything and truly looks at me. Then I whisper, "I love you" and every time, like clockwork, while still looking deeply in my eyes she whispers back, "I love you." The way her little eyes twinkle as it unfolds...Ahh I love it.

I'm thankful for slow cookers. They make life easier...and more awesome! Need I say more?! I think the awesomeness of slow cookers is an undisputed truth!

Ronnie's List:

I'm thankful for new medical equipment. I'm trying out a new vest called the Respin11, and so far, so good. It has different mechanics than the current Vests on the market, and even though it's early, I think it may end up working better for me. Only time will tell.

I'm thankful for quite time. A while ago, I decided that the only way I was going to consistently have time in the Bible was if I did it first thing in the morning. Because of our schedules, this meant that I had to start my devotions around 5am. Although it's early, it's also quite, dark and peaceful. And I'll be honest, I'm pretty sure coffee tastes better at that time too.

I'm thankful for the opportunity to go on family trips. I'm so thankful for the flexibility in our lives. Our trip to California last week was planned about 2 weeks in advance and we were able to go with little worry. As a bonus, my two brothers, mom and brother's GF were able to join us. It was so much fun!!

What about you? What are you thankful for today?

Tuesday, November 19, 2013

Question from Reader: Air Travel for Little One with CF

I thought I would share in case others out there had similar questions and/or concerns.

Hello Ronnie!  I hope all is well!  I was wondering if you could give me some advice / tips for traveling with cystic fibrosis.  I'm about to take my 6 year old daughter to Denver and had a few questions...

1. Do you have to check The Vest?  Or can it be a carry on because it's medical equipment?

2. Do meds have to fit in a quart zip lock bag in the carry on, or ar they exempt from that?

3. Should I have her wear a face mask on the plane?  Cold and flu season and  all.

1. No, you do not have to check the Vest. It can be carried on and will not count as a carry-on since it is medical equipment.
2. I have never put my meds in a zip lock bag and always carry them on. Just remember that if your meds are on a carry-on that also has non-medical items (clothes, etc), it WILL count as a carry-on.
3. I've never worn a face mask on a plane, but it is certainly dependent on the comfort level of the individual (or their parents).
Hope this helps!! Don't hesitate to ask more questions

Have you ever been to Denver or somewhere similar?  We live in Iowa, met you at the CF Family day a couple years ago , and she's never left the state.  Do you have any issues with the thinner air?  I know each case is different, just wondering. Thank you so much!!!

I didn't have any issues with altitude or thinner air until much later on in life. And when I say issues, they were minimal at most. I would bet that any change she would feel, you would feel also.

If you have a question that you would like my input on, please never hesitate to email me at!

Monday, November 18, 2013

Another Half Under the Belt

My marathon training plan called for a half marathon this past weekend. So being the obedient little minion I am, I looked for a race. There was one here in Arizona and one in southern California. I took one look at the course map for the one on Coronado and it was a no brainer. The Silver Strand Half Marathon is 13.1 miles of beauty. Pretty much the whole race you can see water. It was described as "flat and fast". It also meant a good excuse to head to CA for the weekend. We invited Ronnie's mom, brothers, and brother's girlfriend along for the trip and made a fun weekend of it.

The race went well. My main goal was to set a PR. This was the first half I've done that I actually trained for, so it was going to be a good indication of what kind of improvement I had made and what I could do if I was actually running before doing one. I ended up beating my last half PR by 10 minutes with a finishing time of 1:41, which is a 7:45 pace…way better than I anticipated. It wasn't totally comfortable at the end, but hey, no pain no gain, right?

Perhaps my favorite thing about this race (better than a PR, beautiful weather, family spectators and incredible scenery), was the way the day started. Mckenna happened to wake up early (thank you time zone differences), about 5 minutes before my 4:30am alarm went off. So I got her out of bed and let her go through my pre-race routine with me. We ate a bagel with peanut butter together, took a shower together, drank gatorade, got all geared up, and headed off to the race. She thought it was pretty cool to help mommy get ready for my race. It made me smile thinking about years from now, possibly getting ready for a race we would run together, just like my mom and I do. How soon can she start that it's not child abuse? Ha!

Here are some pictures from race day:
The view driving to the start line…full moon, a harbor, and sailboats…PERFECTION

I really liked the view

We all look sleepy. Mckenna looks thrilled to be there…NOT!

"Where'd mommy's race go?" Mckenna kept asking. She didn't quite get that the race stretched as far as she could see…and then some.

The stats

Apparently mile 4 didn't feel as good as the rest

More numbers for fellow running nerds

About 5ft from the finish line

Mckenna enjoyed all the post-race food and drinks (apple juice in hand in this picture). I'm sure there's a rule against that…don't rat me out!

Races are tiring. Right, Mckenna? Hey, it was an early morning for her too.

It was a great weekend, a great day, and a great race!

Tuesday, November 12, 2013

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!


Monday, November 11, 2013

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 :)

Thursday, November 7, 2013

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?

Wednesday, November 6, 2013

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.

Monday, November 4, 2013

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.

Thursday, October 31, 2013

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?