The 4 Lessons of Cystic Fibrosis

Guest Post by Katie Broekema

Hello everyone! My name is Katie Broekema, I am a 22 year-old from Michigan who has Cystic Fibrosis. I am going to share a little bit of my Cystic Fibrosis story with you over a two-part guest blog, so after this post stay tuned to see the role Cystic Fibrosis plays in my life currently.

I was diagnosed with Cystic Fibrosis as a young child, but I never really knew what that meant until I was in high school. I was very healthy as a child; I did not even have a nebulizer until I was 16. My parents have always made a special effort to let me live a normal life, including forcing me to run cross country and track for my high school. I did not realize it at the time, but this was the best thing they have ever done for me. It has shaped the rest of my life, and the teams I have been on are the largest influences in my life. It is because of these sports that I have met my best friends, and it was with their help that I am the person I am today. The life lessons and friendships I have gained through this are unparalleled. I ran cross country and track in high school and in college, and this experience has been life-changing. I have had the most amazing support team, and they helped me become the athlete that I am today, with a 5k PR of 19:47 and 10k PR of 42:36. During this time, I have learned a couple lessons that I want to share with you because of their direct application to life with Cystic Fibrosis.

The first lesson is that you need to be willing to put in the work. Just like with running, handling your Cystic Fibrosis takes a lot of time and effort. There are definitely days in college that I did not want to get up and go to 6:00 a.m. practice, but I needed to. Doing the extra work is what made me be a better runner and a real competitor. Similarly, taking that extra time to do ALL your medication and treatments is necessary in order to be at your peak of healthiness. Just like with running, when you put in the extra effort you give yourself the opportunity to succeed. When you do not put in the effort, you rob yourself of the chance to see what can happen. I am not trying to sound pious, preaching this from the point of view that I always do my medicine, because that is not true. In fact, I didn’t do my medicine all the time during my freshman year of college and I got what I deserved; a 2-week hospital stay over Christmas. I have made it my goal to never be in there again because of something that I can control. I know that I will most likely need to go into the hospital again, but I also know that it will NOT be because I was not doing what I needed to in order to stay healthy. Unfortunately there is not a magical formula you can follow to run giant PR’s or to keep yourself super healthy, but doing what you are supposed to at least gives you a fighting chance.  

Along with the lesson about work follows the idea of trusting those who are in charge of you. For running, this is the coaches. Too often I have seen athletes who think that the coach is full of crap, and that they know better so they will do their own thing or not do all of what the coach asks of them. NO! If you are in a position where you do not trust your coach and believe in the running strategies, you need to seriously consider your position on that team; it may not be the right place for you. Similarly, in the healthcare setting doctors and the medical staff are your “coaches”. If you do not agree with the treatments and medications that are being prescribed, then you need to consider finding another place to go. It is not good for anyone if you do not do your treatments, for you or your medical staff. When you say you are doing a specific treatment, but really you are not, you are hurting yourself and the Cystic Fibrosis community as a whole. Medical professionals rely on us to tell them what does and does not help. When they see no change in you and the doctors think that you are doing a treatment but really you are not, it can cause them to doubt the treatment.  That treatment can make a difference is someone else’s life, or even yours, but you were unwilling to give it a chance.

This leads me to the next lesson that I have learned, which is to always believe in yourself. This is YOU we are talking about, who knows you better than yourself? Therefore you should ALWAYS make the final decision about your medical treatment or coaching regimen. This was a running lesson that I needed to learn the hard way. I struggled during my college career running because I did not listen to my body. I spent so much time trying to keep up with the rest of my team that I was not able to compete well during the races. An injury finally forced this rest time upon me, and it paid off when I ran my best time in both the 5k and the 10k during my senior track season. With running, this was something that was my fault. I was in a situation where my coach did not know what was going on with my body. How could he? He does not have Cystic Fibrosis; all he knows is what I tell him. Now apply this to your health in the doctor’s office. The doctors do have an idea about Cystic Fibrosis in general, but they do not know what is going on with you; what would work best for your lifestyle and for you personally. They can only learn this through a discussion with you. As an example, my doctors wanted me to be on Tobi every other month while I was in college to help keep my lungs clear. That is what the medication is supposed to do, in theory it seemed like that would be a good idea but it just did not work with my schedule. I was too busy to commit to that much treatment; and making the commitment actually made me sicker rather than healthier because I needed to sacrifice sleep to do the medication. After having a conversation with my doctor, we decided together that the best plan would be for me not to do the treatment. Without them knowing my schedule and how it made me feel, my incompliance would have seemed like an act of defiance when in reality it was a recognition on my part of what I was able to do at the time.

This leads to my final lesson, find a group of people who believe in you and are willing to be your support group. For me, my running support group and my Cystic Fibrosis support group are one and the same. This is actually very emotional for me to write this now, because they are some people who have been so significant in my life that I know I will never able to thank them enough for what they do for me. I challenge you all to find a group of people like this in your life. Find those people who push you, and make you better than you are now. They are the ones who will help make you strong and able to push past the difficult parts of this disease. This group wants you to succeed, and you want to succeed for them. Because I know once you find a group of people like this, you will be able to grow to your full potential in whatever you do.

These lessons have been instrumental in my life. Although some lessons may have taken me longer than others to learn, I know I am where I am today because I learned how to put in the extra work, I began to trust in my doctors and my coaches, I believed in myself and my abilities to discern what is best for me and I had an amazing support team. I firmly believe having these four things can also help you succeed in whatever you choose to do, like it helped me with my running and taking care of my Cystic Fibrosis. These lessons have also been helping me out with my schooling, which is something I am going to talk about in my next guest blog. Are these lessons something that you feel you have a firm grip on, or do you struggle with some of them?

BIO: Katie is 22 years old and has lived in Michigan her whole life. She graduated from Albion College with a double major in computer science and communication, and she is currently working on a Master’s degree from Central Michigan University in communication; with a focus on health communication. In her spare time, Katie enjoys finding new research topics, preparing to teach her COM 101 classes, helping coach the local high school cross country and track teams, running, cooking and convincing various family members that they should get her a Pomsky puppy. (Look them up, they are adorable!) She would love to hear back from people who have read her posts, her email is Broekema.ka@gmail.com

Top 10 Tuesday: Best Things About Hospital Stays

It's no secret that Ronnie and I have always embraced hospital stays. They look different now that we have Mckenna, but we are still thankful for them and still have a lot we love about them! (List compiled by both of us)

10. Absence makes the heart fonder - While it totally stinks to not have Ronnie around, it does make me appreciate him and how much he does around the house, for me, and for Mckenna. So in that regard, it is a nice reminder of how much I love and appreciate him!!

9. Adventures - Mckenna and I have started using hospital stays to enjoy time together on adventures around town. We have hit up several fun kid spots around town and I think we both dig it.

8. Family time - Since my mom, step-dad and brother live down here in Tucson, I don't get to see them nearly as much as I'd like to. When I'm in the hospital though, I'm only about 15 minutes away from them and see them more than they'd probably like to :)

7. Family time part II - Even though my in-laws (Papi and Nana) are only about 45 minutes away from our house, we don't see them as much as we'd like to (if you can't tell, I'm a big family time kind of a guy). When I'm here in the Hole, Mandi and Mckenna "move in" with Papi and Nana which makes me feel a whole lot better about my time away. I know Mandi loves being around her parents and I'd bet that Mckenna loves it even more.

6. Home cooked meals - I often get home cooked meals courtesy of my wife when I'm at home, but there is always something to be said for my mom's classics. When I'm here in the Hole, someone brings me dinner almost every night and it's usually something made by my mom. Some of the meals brings me back to my childhood, which for me, is a good thing :)

5. FaceTime time - It's not often that Mandi and I have any reason to FaceTime when I'm at home, but we have all of the reasons in the world to FaceTime when I'm not. I absolutely love to chat with Mckenna on FaceTime because she always does something to make me smile. From holding the phone super carefully as to not hang up or giving me 102 kissies during the course of the call, I'm usually smiling ear-to-ear.

4. Rest - I feel selfish saying this, since I know Mandi experiences the opposite, but it is nice to experience unencumbered rest while I'm here in the hospital. I don't feel guilty to just lay in my bed or sit in a chair and not do anything. I tell myself that it's an important part of the tune-up process, and whether that's true or not, I take full advantage of it.

3. A chance to reset - Ronnie had been "off" for a few weeks before going in. I am so thankful he has a place he can go, to get better, and "reset". He always comes back the man I know and love and full of energy!

2. Hospital traditions - While Ronnie and I can't do all our hospital traditions as much now that I don't stay down there with him, we still get the chance to do some (Dunkin Donuts breakfast, listen to radio podcasts, etc) when I go down to visit. It's really nice to sneak in a few of them here and there.

1. Leaving - Even though it's a place we don't hate, nothing feels better then leaving the Hole!!

Early Exercise

Thankful Thursday: Play Dates & Surprise Visits

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 play dates. Mckenna and I went to the train park with my friend, and her's. Angie and I became friends when we were both pregnant, and Mckenna and Harlow have been hanging out since birth. They love spending time together. Harlow became a big sissy a few weeks back, and now Mckenna gets to play with Harlow and baby sissy, London, on play dates. It's always a blast.

I'm thankful for my parents. Ronnie has been in 3 weeks as of tomorrow, and I have virtually lived at my parents' house with the except of 2 nights. They have made the stay a breeze and for that I am SO thankful.

I'm thankful for water. In AZ, in the summer, water becomes your best friend. I have guzzled a lot of water each day (about a gallon a day) ever since pregnancy and nursing, but it tastes so much better in the summer!

Ronnie's List:

I'm thankful for an adult CF team that is trusting in the fact that I know my body and know what I need. They have been incredibly helpful this stay and definitely putting me in the best position to succeed. I don't feel the pressure to get out of here as quickly as I have in times past and that has made a big difference. I'm getting close to blowing this popsicle stand!

I'm thankful for surprise visits. Yesterday was Mandi and my 3 year wedding anniversary. Mandi didn't mention coming down at all Monday or Tuesday, so I kind of figured something was up :) After seeing that she was not online Wednesday morning at her usual time, I was more convinced that I'd see her. To my delight, Mckenna and her walked into my room just before 11am. I was soooooooo happy. I know that packing up and coming down here isn't easy, and I'm just thankful that I have a wife willing to do that.

I'm thankful for my momma. My mom has spent time here in the Hole with me almost every single day during my time here. As a bonus, she usually comes bearing gifts like Dunkin Donuts coffee or a bag of jelly beans. She also brings me dinner almost every night. I am truly blessed to have the family that I do.

So, what are you thankful for today?

Three Year Wedding Anniversary

To my beautiful wife - Happy anniversary! Three years down girl!! I can't thank you enough for being the woman that you are. If there was a more perfect wife and mother, I've never met her. Not happy about being stuck in the Hole on this day, but it's only because I plan on spending 50 more of these with you. I love you so much and I can't wait to add on to this "leather" day!

I hope the vows that I said to you on our wedding day are backed up by my actions every single hour that we share together...

My vow to you - May 22nd, 2010:

Mandi, I know that you have been dreaming of your wedding day since you were a little girl. And although I can’t claim that I ever dreamed about this day as a little boy, I now know that it was you I was dreaming of when I became a man. I could stand here and tell you all of the reasons that I love you, but we’d miss our honeymoon.

I just want you to know that you’re my inspiration. You have given me a zest for life that I’ve never felt before. Your smile, love, laughter, winks, hugs, kisses, drive, trust, spark, words, glances, encouragement and your support, fuel me each day and give me the energy to be who I am. Before you, I didn’t quite know what my purpose was. I now know that it was to be your best friend and your husband. No matter what lies ahead for us I will see it as a journey; one that can only be completed by the two of us together, with God by our side.

I promise to you today before God, our family and friends to love you unconditionally. I believe that God has been preparing us for this moment and for our future together since the day we were born. Before this world was even created, I believe that God chose you as a perfect compliment to me.

Through the good and bad, I want you to always know that I will be by your side. I promise that you will never again face life alone.

I promise to dance with you in the sunlight and prepare us for the storms. When the storms do come, I promise to hold you and to protect you. I promise to never keep tallies of wrongs, instead give you praise for all that you do which is right. I promise to never let the sun go down on our anger, and to treat each morning as a new day to love you. Our love may be like the ebb and tide of the ocean, but it will always flow.

In times of want, I will do all that I can to make our love rich. And in times of plenty, I will never let our love grow poor. In sickness, I will nurse you back to health. In health, I will do everything I can to watch you fulfill your dreams. In sadness, I will give you a shoulder to cry on. In happiness, I will be there to create memories with you.

When you need someone to encourage you, I want it to be me. When you need a helping hand, I want it to be mine. When you long for someone to smile at, look to me. When you want to tell a story, turn to me. When you feel weak, take my strength.

When my strength isn’t enough, I promise that I will call out to our Lord in Heaven. I promise to lead by example in our relationship with Christ and remain faithful to Him all of our days. I promise to lead us in a life of worship and to always put the Will of the Father before our own.

I will not forsake you or these vows that we have made, but rather strive to show you my love for the rest of our lives. This is my promise to you: From this moment, everything I am and everything I have is yours and for eternity my love for you will remain.

Update from the Hole

Thought an update was in order after 18 days in the Hole...

This stretch has been a little longer than my recent stretches, but I also came in sicker than I've been for a while. Not only "CF sick" in terms of increased cough, sputum production, etc, but also "sick sick" with a fever, sore throat etc. My PFTs followed suit and I blew some of the lower numbers I've had for quite some time. It wasn't even with a second thought that the team knew I needed to be in here.

My first week in here was very similar to most of my first weeks in here. When these antibiotics first hit my body, it feels like I'm literally being hit. Sore joints, sore muscles, aches and pains are very common my first week here. It's become par for the course as I get older and something that I'm mentally prepared for.

After 10 days in the Hole I did another set of PFTs. I came in blowing a 57% and after 10 days of treatment, I blew a 60%. I had to quickly get in the right frame of mind after blowing that number. More so, I wasn't feeling all that much better. After the initial disappointment that lasted about 10 seconds, I thought back to other times in here that my numbers actually went down in the first week. The times that staying in here 30 days was coming place. I did a quick perspective exercise and was feeling good about it all at the end of the day.

In this third week, I'm happy to say that I'm still trending upward. I'm not up to my magical "baseline number", but more importantly, I'm not back to me yet...but, I'm getting there. I blew again yesterday and blew a 66%. For me, nothing to brag about, but also an encouraging step forward to getting out of here. I'm starting to clear out some of the old stuff that's been hiding out deep inside my lungs and it feels like I can take deeper and deeper breaths each day. I'm hopeful that I am truly in the homestretch.

My workouts have been getting better as well. I make sure that I'm taking a brisk walk daily and I have even managed to get some runs and stair work in while I've been here. On Sunday, I was able to run for 30 minutes straight around the hospital. It wasn't easy, but it felt great after I was done.

Anyway, just a quick update for those of you who were curious. I thank you for all of your prayers, notes and support. I'll be out of here soon.

"Are You Tired?"

Thursday we went down to visit Ronnie in the hospital. It was an awesome day. Mckenna enjoyed herself, and was relatively content being cooped up in the hospital. She got bored being in the room for too long, but she LOVED walks around the hospital exploring, so we took as many walks as we could, and she even got to take some walks with Grandma (Ronnie's mom) when she came over to visit. We stayed longer this time (morning til bedtime) since the last visit went so well, and it was a total success.

So at the end of the fun-filled day, we headed back up to Phoenix at Mckenna's bedtime, so she would just sleep in the car on the way home. It's about a 2.5 hour drive from the hospital to my parents, and little miss thang doesn't do well on long (and short) car rides if she's awake.

Well around 9pm I hit the last stop sign before my parents' neighborhood (about a quarter mile from their house). As the only car in the intersection, I tapped my breaks to slow down, and made my right turn, without coming to a full and complete stop. I barely had time to hit my accelerator to speed back up before I saw cop lights turn on behind me. "Awesome." I thought. Was I concerned about a ticket? A little. Was I concerned about this idiot waking Mckenna up in the process of pulling me over for a rolling stop at an empty intersection at 9PM at night? BIG TIME. I pulled over the first chance I had, which was at the entrance of my parents' neighborhood. I rolled down my window and began to fumble around for my license and registration.

Then, as I scoured for my most current insurance card, I heard, "Hi, Ma'am."

"Hi," I whispered back with my head WAYYYY out the window as to try to not wake Mckenna in the backseat.

"Do you have a little one in the back?" He said as he looked into the back window.

"Yeah, sorry, trying to keep her asleep."

"I pulled you over because you didn't come to a full and complete stop back at the stop sign."

"Ok," I said, with no excuse other than it's a waste of time to stop, when there are no other cars stopped at the intersection...and I figured he didn't want that excuse.

"This your house?" He asked.

"No it's my parents'. I'm staying with them."

"Where are you coming from?"

Oh boy, I thought. I wanted to lay on the sympathy card big time, but decided it would be more effective if I held off...yeah, I'm a bad person, I know. And I decided I'd only tell him if he decided to get nosy and ask lots of questions. "I'm coming from Tucson."

"Tucson? What were you doing in Tucson?"

Jackpot! "I was down there for the day visiting my husband in the hospital." I had a feeling at that point he wouldn't give me a ticket.

"What's he in the hospital for?" He asked, as if to see if I was lying.

"He has Cystic Fibrosis. So he's been in for a couple weeks getting treatments."

"Oh," he said with a little gulp. "I'll be right back." He said before walking away to run my license.

...I sat, nervous. I hate being pulled over. I hate being pulled over for something so dumb it makes me want to punch the cop in the face.

"Are you tired?" I heard and looked up. It was kind of a strange question. I wasn't sure where he was going.

"Umm, yeah. It makes for a long couple of weeks," I said out loud...I wasn't sure if that was the "right" answer, but I gave it anyways.

"You probably just want to get home, get your baby in bed...take a shower...and maybe relax a little bit."

...That's strange, I thought....but I also knew he was sympathizing with me and that I'd likely get off with a warning. "Yeah," I said.

"Ok, well I'm just going to give you a warning, but you need to come to a full stop at that intersection. It's so dark at that intersection, if someone were there without lights on, you wouldn't see them."

I had a couple smart responses I wanted to reply with. I wanted to ask the likelihood of in a pitch black area someone not realizing their lights were off. And if they were off, the likelihood that their tail lights being out too. BUUUT I kept my mouth shut and just replied, "you're right."

We said our goodbyes and I headed on my way...without a ticket.

Workout Wednesday: The Perks of Gym Childcare

As many of you have probably gathered, Ronnie is in the hole and slacking on blog posts. Being the loving wife that I am, and feeling bad that blog posts are sitting at the top for days, I've decided to write another blog...you're welcome, hubby :)

I love working out. I love going to the gym. There are plenty of days when I just don't feel like going, but overall, I am happy I'm a person that works out and stays fit, and I know I'm only a person who works out and stays fit if I actually workout on a consistent basis. Therefore, even on days I don't feel like going to the gym, I still go. I workout 5-6 days a week, which for me generally includes some sort of cardio outside at some point during the day (usually early morning) 5-6 days a week and lifting weights at the gym 4-6 days a week. Ronnie joins me for most of my workouts at the gym...cardio we do separately because, well, he doesn't really like running with me (different story for a different day - ha!)

The one tough thing about hospital stays is being with Mckenna, all day, every day...morning, noon and night. And while I work from home and spend A TON of time with her while Ronnie's not in the hospital, it's just different. When Ronnie is home, he takes her all morning while I work. I have an uninterrupted 4 hours, child free. I have someone I can say, "will you take her to the potty?" to. Or someone else to put her down at night. When Ronnie's in the hospital, sure I could ask my parents to do stuff, but I already feel bad enough having them watch her a couple hours a day while I work. After all, it's my child, my responsibility. And I know they don't mind, but I do. So it's a bit of an adjustment from what I'm used to. And often times, I feel overwhelmed (to be totally honest).

SO here's where the gym and free babysitting intersect :) I love working out. And I LOVE a break during the day. Therefore, gym childcare is an AMAZING thing. I get to workout AND have some "me" time. Here's the way I see it. Working out is good for my body and mind. Getting a break from Mckenna is really good for both of us. I have noticed on days when I don't go, my patience is thinner and the way I handle her is different because my stress level is just that much higher. Getting a workout in and a break from being "mom" allows me to be the best mom I can be. I notice just that little hour to hour and a half break gives me the boost I need mentally and resets my emotions, stress level and overall being just enough that the second half of the day I'm simply a better mom than if I hadn't gone at all.

Plus, an added bonus is that Mckenna LOVES other kids, and it's a great opportunity for her to learn how to play with other kids and learn life lessons. Sure we have play dates with other moms and kids, but I find when parents are around, they feel like they have to constantly referee. "No, give that to her! Share. Share, Tommy." "Oops, no, honey, not like that." In childcare, it's a free-for-all. I watch Mckenna on cameras from my cardio machine much of my workout. I watch as kids rip things from her hands and run away. I watch her get bumped into without someone rushing in to pick her up. I watch her wander from group of kids to group of kids trying to muddle her way through awkward social interactions. I watch her sit quietly and read a book. I watch her beg a childcare worker to pick her up, sometimes they do, sometimes they don't. I watch her befriend older girls in the room to help her around and play with her. I watch her entertain the babies by bringing them toys and bouncing them in their bouncy seat. All of these things are beneficial in my eyes. All of these things she doesn't get at home. All of these things can be translated into lessons of the real world. Sure I want to punch the little kid in the face that I saw shove her over for no reason (yes, I did actually want to go punch him a little bit...I know, I know, inappropriate), but truth is, it's healthy for Mckenna, and I know that. Had that happened on a play date,  the kid's mom would have rushed in (I hope) and scolded him, she would have picked up Mckenna and said sorry, the kid would have been forced to say sorry. It would have been a whole big ordeal. There, he pushed her, no one noticed, she picked herself back up, he pushed her again (yes, that is when I wanted to punch him in the face!), he ran away, and she picked her back up again. In life, she will have to do just that. She will be treated poorly for no reason sometimes. She will get no apology sometimes. And will have to pick herself back up, alone, sometimes. And my job is to allow that to happen from time to time....and man it's hard if I'm close by. At the gym, it forces me to let her learn in a new way...while I watch like Big Brother :)

So for those of you moms (or dads) out there that are with your kids all day and don't need a break, I say holy cow, you're my hero. For the other 99.9% of parents out there, I say, join a gym! You don't even have to work out intensely every day. There are some days that I don't feel like working that hard, so I just mindlessly stroll on the treadmill and browse Pinterest...sad but true! The renewed energy I have when Mckenna and I walk out the doors makes me attack the rest of the day and be the best mom I can be for Mckenna!

Happy Mother's Day?

Well I'm a day late and a dollar short, but happy Mother's Day to all the mommas out there. I am SO thankful for the wonderful moms in my life - between my mom, Ronnie's mom, and my Grammy, I have SO many wonderful examples of how to be a good mom.

My Mother's Day yesterday was interesting...hence the question mark in my title. Mckenna was in a funk...all...day...long. Well that's not entirely true, she was pretty good a lot of the day, but when she was in a funk, she was MAJORLY in a funk. She had a fit unlike any I have ever seen from her. You know the type, where when you're done dealing with it, you start crying yourself (or am I the only one? Boy, that's embarrassing...I'll blame it on all the hormones I've been juiced up on since November). I will say, it was a little sweet though because when she saw I had started crying, she stared at my face, reached up and put a hand on my cheek and planted a HUGE kiss on me. She knew she had made me sad, and it made her sad, which left me relieved that she wasn't in fact the spawn of satan like her fit would have led you to believe. I was really bummed and really frustrated all of yesterday. But as I laid in bed last night and thought back on the day, I wasn't quite sure why. Had she really been that much worse than a normal day? Was she really in that much of a funk? Or was it me? Was it that it was Mother's Day and I thought somehow she should have known and been an angel?

I think the actual problem was my expectation verses reality. I think that's always my problem, actually. If you remember, she was AWFUL on her birthday. Was it that she was that bad or was it that it was her first birthday and I pictured she should know it had to be all rainbows and butterflies? I think sometimes I build up how I think things should be or expect others to know my expectations, and then let myself get upset when it doesn't go as it did in my mind. Logical? Nope! Rational? Not at all. But I'm sure I'm not the only one that does this, right? I mean, how silly to think a 18 month old knows it's Mother's Day and that she should be on her best behavior?! I think it's silly to think an 8 or 18 year old should know that...especially if I haven't communicated my expectations clearly to them. I think I need to stop building up in my mind how I think things should go, and let them happen as they will. Sure would save me a lot of frustration.

I will say, with the exception of yesterday (and perhaps what wasn't such a bad kid but a bad mental state on my part), Mckenna has made this hospital stay a breeze. It's a lot of change for her too, but she's taken it in stride. She's been a great listener, happy, relatively content, and kept the fits to a minimum...or at least made them short and recovered quickly (which is all I expect and appreciate). The best thing I've taught her in a long time was to say "okay". It's been a lifesaver. "We are going to get in our stroller now....Say 'okay'!"...."otay" she chimes back. It's just enough of a distraction that she doesn't fight me on much because she's too focused on saying "otay" back to me. That may wear off soon, but for now, it's the best thing since sliced bread!

I realize this blog rambled and really didn't have a point...buuuut for those of you that know me well, you're likely not surprised! Happy (day after) Mother's Day!

...The Fun Continues

Mckenna and I have continued to fill our days with fun. Each day we have continued to do some fun adventure. Monday we went to the railroad park for our afternoon adventure. It's this fun park where you can ride a train, look at trains, and ride a carousel (I'm not sure how a carousel fits the theme, but she was into it). The first train video shows Mckenna BALLING because she was startled by the horn...but I missed her being startled and just got the aftermath. The second video was me doing what any (twisted) mom would do. We sat and had lunch looking at the train. And I knew the train would blow its horn before its next run. So I grabbed my camera to make sure I caught the fear on film. One day she will be glad I got it on video, right? Regardless, Ronnie continues to watch it over and over and laugh out loud, so it was worth the footage :) You'll notice in the carousel video, she's not totally sure she likes it and wants to be in the safety of the wagon across the way!

Mckenna being brave...when it wasn't moving

Semi-enjoying the ride after she stopped crying

Tuesday we went to the zoo. Mckenna loves the zoo, and it's familiar. So it was a good way to get out, but not wear her out too badly, and keep her from getting to overwhelmed. I don't have any pictures though because, well, we probably have too many from the zoo already!

And then Wednesday our afternoon adventure was going to see Ronnie. It's a bit of a drive (2:15 from my parents' house), so I drove during her first nap, we hung out for 4 hours between naps, and I drove again during her second nap. It was a lot of time in the car, but we weren't sure how she'd do visiting him (and by how she'd do, I mean, how exhausting it would be for us to entertain her in a 15 by 15 box). Well she did great. She loved it. She had fun in his room exploring, but she REALLY loved walking the halls like the Mayor of UMC. She was little miss meet and greet. "Hi!" "Doctor" "Hi" "Man" "HI" "Woman" "Hi" "Bye bye" "Hi" "Hi" "Doctor"....she said enthusiastically the whole like we would walk the halls. It took everything in her little body to keep her movement to just a walk, as she reallllly wanted to get to run all over, but we wouldn't let her. We brought her down to the new children's hospital where she played with all the toys, activities, etc (see pictures/videos).

 Enjoying the interactive wall with daddy at the hospital.

All in all, it's been a good week. We both miss Ronnie, but we are filling the time with fun. In my opinion, Mckenna's thoughts about hospital stays are already being shaped, and I will stop at nothing to make her love and appreciate them as much as we do.

Thankful Thursday: Adventures & Snacks

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 hospital visits - regardless of length. Mckenna and I went to see Ronnie in the hospital yesterday and it was awesome to be together as a family.

I'm thankful for my parents. We have been living with my mom and dad while Ronnie is in the hole and man does it make life easier. They are such a huge help. The stay would be so much more difficult without them.

I'm thankful for adventures. Mckenna and I have been taking adventures each afternoon and it has made the days fun and fly by.

Ronnie's List:

I'm thankful for a hospital pharmacist who is on top of it. I see the hospital pharmacist almost every day and he is always looking to make slight adjustments to make sure I'm on the right track. It takes an active and engaged team to maximize a hospital stay and I feel very thankful that I have one here.

I'm thankful for snacks from the wifey. Mandi made some good treats for me for this hospital stay that I am taking full advantage of. She sent me down to the Hole with a huge tupperware full of oatmeal raisin cookie muffins and when they visited yesterday, she brought down a big ol' tupperware of "white trash". It's Golden Grahams, pretzel sticks, Coco Puffs, Reese's Pieces and peanuts all covered with melted white chocolate. YUM!

I'm thankful for lip balm. Whenever I'm in the Hole, my lips start cracking and peeling. I'm not sure why, but it's like clock work. Thankfully, I'm able to slather on some lip balm 781 times a day to keep them as moisturized as possible.

So, what are you thankful for today?

What Brought Me Into The Hospital

What brought me in the hospital this time, is basically what brought me in the hospital last time - the inability to fight off whatever cold/flu/virus/"insert name here" that I was battling. When I came in the last time, January 7th, I had been fighting a cold since December 15th. When I came in this time, May 3rd, I had been fighting a cold since about January 23rd. Now, that's not to say that I have felt terrible for the last 3 months, that's certainly not the case, but I've probably only been on top of my game about 3 weeks total. It's been full of days (and nights) of throat clearing, nose blowing and throat lozenges sucking that finally made it's way to my lungs.

When I was released from the Hole on January 21st, I blew a 75% FEV1. That's the highest number I've seen in the hospital since 2003. I was VERY encouraged especially since I was coming off a terrible cold over the holidays. I was looking forward to working my booty off and seeing if I could push that number a little higher. Unfortunately, I started sniffling again about 2 days after my release. I was still able to workout, and of course do all of my treatments, but I wasn't able to attack my body with the kind of effort that I usually give. One and a half months later, I had a follow-up clinic appointment - I blew a 63% FEV1. I was certainly disappointed, but not at all shocked. Exercise is what keeps me at the top of my game and I hadn't been able to exercise like a normally do (a lot more walking than running). The team was a little concerned and asked if I needed some sort of intervention and I declined thinking I was on the mend of whatever I was battling.

I started Cayston shortly thereafter and had a few weeks that I felt great. I was running like normal. I was able to push myself. I didn't have a sore throat. My snot wasn't green. I wasn't going through a box of tissue a day. I felt good.

Fast forward to the third week in April. The wheels started coming off the bus. I started up again with a stuffy nose, sore throat and coughing, but I was confident that it wouldn't last long. I was wrong. The fourth week of April I was worthless. I basically laid in bed or on the couch all day doing treatments and then I'd be in bed by 8:00pm every night. I was trying like heck to fight off whatever it was I was battling. I found myself with less and less energy, and worse, symptoms becoming bigger and more pronounced. It all came to a head when on the night of April 27th, I coughed up quit a bit of blood (1/4 cup to 1/2 a cup). I then knew that whatever I had was not just isolated to my head and sinuses.

I called the team on that Monday, after coughing up more blood, to see what they wanted me to do. To be honest, I was calling to see if we wanted to start an oral antibiotic because I really didn't want to go back in the Hole. My pride was getting in the way since it had only been three months since I was last in. After describing my symptoms (blood, pain, shortness of breath, fever), they recommended a lung x-ray to make sure nothing major was going on. Thankfully, the x-ray came back negative, and the plan was to start an oral and inhaled antibiotic and keep them updated. I only continued to go downhill. (I ran a 101 to 102 fever for the entire week)

I fought like crazy on Monday, Tuesday and Wednesday, but on Thursday, the white flag was waived. I knew I needed help. Whatever it was that was going on, I couldn't beat it down "on my own" (its never actually on my own). I swallowed my pride and I called the team. They set up a clinic appointment for me on Friday (May 3rd) and I also did some PFTs. I blew a 57% FEV1. That's a far cry from the 75% I blew a few months earlier. We all agreed that a stay in the Hole was necessary.

So here I am. Writing to you from my bed at UMC Hospital. Doing what I need to do for my family. Not something I wanted to do, but in the big picture, it's not about me, it's about them. If I needed to live here to be able to have the chance to spend more time on this earth with my wife and daughter, I'd do it in a heartbeat. Now, it's all about doing what I need to do in here to maximize my time and hopefully my health.

I raised the white flag last week. I'm looking forward to waiving the checkered one soon.

Let the Games Begin

As some of you may have read, Ronnie is in for a tuneup (and if you didn't read it, you may have gathered it by the lack of postings). It's no secret that Ronnie and I don't dread hospital stays. Before Mckenna was born, we used to treat them like a "vacation" of sorts - filling the time with all sorts of fun traditions. Things are a little different now that Mckenna is in our lives. I no longer stay in the hospital with Ronnie, so for the 2-3 weeks, he is in Tucson and Mckenna and I are in Phoenix (2 hours away). We visit, but any of you that have kids can relate, the room feels about 30 times smaller and the hours 6 times longer. For a kid as active as Mckenna, a hospital room is exhausting to entertain her in, and the last thing Ronnie needs is to get run down while he already doesn't feel great and needs to rest. So we visit, but not much (unfortunately). The first hospital stay was AWFUL. Me, alone, with a 3 month old that wouldn't sleep...really, like I'd hold and nurse her all night, was AWFUL. She was just off the whole stay and it was awful. The next stay was a little better yet. Mckenna actually slept, sooo that was a plus. Then last hospital stay was AWESOME. My parents had moved back and Mckenna and I practically lived with them, all but a night or two here and there. 

So this hospital stay, I was actually looking forward to again. Mckenna loves her Nana and Papi and LOVES playing at their house. I took 2 days a week off so the amount I had to work was WAY down, and I have all sorts of fun activities planned. Each morning I will work and we will just play at the house, and then after Mckenna's first nap, we will go on an adventure to somewhere fun. So far we've been the to zoo (not a new adventure for her, as we've been going 1-2 times a week, but she LOVES it and we just hit the highlights) and to a little aquarium. The aquarium wasn't that great, but she kept talking about the fish, so I think it was memorable at least. My parents also have a pool, so Mckenna is becoming quite the fish herself, which is fun.

Obviously I would prefer to have Ronnie home with us, be at our own house, etc, but this is very much like a vacation - it's really fun, you look forward to it, and then, it's nice to be home. So we've been having a blast on vacation. I told Ronnie the other day that it's actually a little less work for me when he's in now because Nana and Papi do SO much, I mean, I don't make dinner, my mom folded my clean clothes yesterday, I work less, sounds like a sweet deal, right? Not to mention it's SO fun to watch Mckenna with my parents. They are so good to hear and she LOVES being with them. 

Some pictures from the weekend:

Thankful Thursday: 4 miles & Tylenol PM

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

Mandi's List:

I'm thankful for time with family. My Uncle Scott was in AZ for a conference, and we were able to spend some time with him last night. It was so great to catch up and it was fun seeing him meet Mckenna for the first time. 

I'm thankful for morning runs. I've been running 4 miles at 5am lately, and I am SO thankful I've been able to do that. I know I've mentioned this before, but there's something about the cool, crisp air in the morning, and the feeling of getting going while it's still dark out that breathes life into my day. 

I'm thankful for a hubby who takes care of himself...even when he doesn't necessarily want to. It's looking like tune-up time in the Sharpe household and I know he's feeling a little guilty about leaving Mckenna and I. But I'm thankful he's willing to go in and get himself back into tip top shape! He's such a good husband and daddy.

Ronnie's List:

I'm thankful for a wireless headphones. I've been living on treatments lately while I battle a head/upper respiratory virus, so it's been nice still being able to hear the TV as my Vest is "pounding" away. They've also presented a lot of fun to Mckenna who feels super cool wearing them and watching Choo-choo Soul :)

I'm thankful for a pro-active CF team. I've been in contact with my CF team quite a bit while I've been in this funk. They are proactively trying to get me better, and if that doesn't work, they're not afraid to call in the big dogs!!

I'm thankful for Tylenol PM. Tylenol PM has served two purposes for me lately - breaking my fever at night and allowing me to sleep soundly. Whenever I'm fighting something, sleep is very, very important. Only way I can fall to sleep super early at night is with a little bit of help from my friend Mr. PM.

So, what are you thankful for today?

Turning Back the Clock

Great question from a reader:

I have a few questions for you, I remember reading on your blog about how you raised your PFTs. I was recently told I can't raise mine and nothing motivates me more than someone saying I can't. I obviously went through the stage every CF patients goes through and stops or halfway does their medicine and treatments and stops working out. So my question is what all did you do to raise yours? What kind of exercise? And did you eat differently?

I was told in 2009 that I should get comfortable with blowing a 50%. As with you, that motivated the heck out of me. It took two years of crazy hard work and dedication, but I was able to blow a 73%. Since then, I've remained steady and haven't had too many drastic dips. I've even been able to inch them up a little more.

For two years, this was my schedule -

Albuterol/Atrovent 4 times daily
Pulmozyme 2 times daily
7% 2 times daily
Inhaled antibiotic 2-3 times daily
Vest 4 times daily for AT LEAST 30 minutes at a time
Ran for 20 to 45 minutes 5 days a week
Took daily walks and bike rides
Lifted weights 3 to 4 times a week

I didn't really eat all that differently.

As you see though, it was a big commitment and obviously one that has paid off for me. When I blew that 73% in 2011, it was my highest number since 2003. So you can't tell me that we can't "turn back the clock"!!

Anyway, hope this helps and please let me know if you have any other questions 

Mckenna Monday: Teeth, Words, Swimming

Hey guys, me again. Mommy and Dada have been slacking on blogging since Thursday, so I figured it was time for me to step in and save this blog from going down in flames (as if it hasn't already, ha! I kid, Dada, I kid). A lot is new with me since the last time I wrote, I mean, I'm an 18 month old, we grow up fast. But I'll try to hit the highlights about me and my life these days.

First and foremost, I'm getting more teeth in my mouth. If you ask me to show you my teeth or smile, I will, if you want to see them. They're pretty cool. They hurt a little, but Mommy says it's about time for me to finally get more teeth, so she's less than sympathetic. She does help me my giving me a little "medmin" when they hurt. You know, that stuff that tastes like cherry and you drink it out of a syringe thingy. She also helps me by giving me "eye" to chew on. I just say, "tee, tee" and show her my teeth and she goes to the freezer and says, "Ice for your teeth?" and gets my "eye" to chew on. They're frozen little toys I get to chew. Sometimes she's silly and just gives me one at a time, but I really like having all four at once and carrying them around more than I like really chewing on them.

Oh and I'm learning lots of new words that help me tell Mommy and Dada what I want or what I'm thinking. They say I learn lots of words each week, but I don't keep count (mainly because I can't count yet). I just know that they help me get my way...or at least try to. My favorite new word is, "Idunno", you say it you don't know something. Like when I look for my babies. I say, "baby? Idunno" and then they know I have no idea where it is. My other new favorite word is "High chu". That's the tall place I sit in to eat or that I sit in when Mommy doesn't want me running around while she's doing something. So sometimes I sit in my ""high chu and watch videos on YouTube. My favorite is a Russian cartoon that "Idunno" what it's called and neither does Mommy because the title is in Russian, so Mommy and I call it Baby and Bear, and Mommy can only find it by looking in her history to find it because she can't search for it...in Russian...on YouTube. Anyways, I love my "high chu" because I love to eat and I love videos...I wish mom would let me do both at once, but her and daddy say no videos during meals. Oh yeah, and sometimes "bahs" bother me when I'm trying to eat. Mom calls them flies, I call them "sies". So we say, "sue sies, sue sies"and bat them away with our hands. Oh and my other new favorite thing to say is at night night time. Mommy or Daddy lay me down and say "night night" and I say "nigh nigh" and they say, "love you" and I say "la lu" and they say "see you tomorrow" and I say "morrow". I love that "morrow" word. It means they are coming back for me when I get up. I really like that they will come back for me when I'm up, or I'd get lonely. I don't like being in my bed, awake, for very long. Mommy says some kids will play in their beds when they wake up. Why would I do that? It's dark, and I'm by myself, and I don't have my toys. That would just be silly to want to play in there.

And I LOVE to play and go "mimming" in Nana and Papi's "poo". We put on our bathing suits, sunscreen and "ats" on our heads and we bring "twoys" in the "ater" and "pay". It's so much fun. I usually just stay on the step, but sometimes I am brave and go into the middle of the "poo" with Mommy, Dada or papi and "mim". I'm pretty good at "mimming" and even will go under "ater" if Mommy or Dada go under at the same time. I also LOVE blowing "babas"with my mouth in the "ater".

Alright, well, it's nap time for me. Mom has been trying to get me to switch to one nap a day instead of two and I'm making sure she fails miserably by not sleeping very long for the one nap...so some days it's two naps and sometimes one...hmm I wonder if this will be my only one today, better make it a short one just in case.

Thankful Thursday: Control & Support

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 that God is in control of my life. For a control freak like me, it's a hard thing to relinquish control. But I know I am in good hands. There are some events in life that we will never have explanations for, but I seek comfort in the fact that there are reasons for everything, even when I am not privy to them.

I'm thankful for Mckenna. Monday night before bedtime, Mckenna just wanted to snuggle in her glider...a little longer than normal. As we sat there, her snuggled in my arms, I studied her face. I wondered to myself if I would remember the exact contours of her face at this stage years down the road. Would I remember the slight wrinkles under her eyes, the shape of her lips, the rosiness of her cheeks. I wondered why I never took the time to commit her face to memory intentionally. I listened to her breathing. Slow and calm. Relaxed. Safe. In hindsight, there was no better time to appreciate and cherish my little love than Monday night.

I'm thankful for Jelly Bellies. No explanation needed! Ha!

Ronnie's List:

I'm thankful for a supportive wife. Mandi makes my CF and non-CF life very easy. She is quick to offer a helping hand with anything I need and completely understands when my health must take precedent over something else going on in our life. I can't imagine being with a partner that didn't understand that we must do what we have to do in order to put our family in the best position to succeed. Sure makes things a lot easier!!

I'm thankful for support. The outpouring of letters, notes, emails, phone calls etc has been so humbling since our little hiccup in the IVF process last week. We of course never wanted or expected to have a miscarriage, but being surrounded by love and support certainly makes it a little more bearable.

I'm thankful for apps. It still amazes how many apps are available for download that can make our lives easier. Mandi just started using one that helps track her food intake and exercise, and I must admit, it's pretty sweet. So sweet in fact that she convinced me to give it a try :) 

So, what are you thankful for today?

The Sniffles and Sneezes

She's done it again!

Looks like I managed to catch another little bug that my own personal germ factory was able to pass onto me. In fact, I wasn't the only one in the house to get it, but I'm sure the biggest weeny about it ;)

It all started on Friday with a sore throat and ear ache after a 2.5 hour marathon with the folks at Cox Communications over someone dropping the ball and getting our service turned off. When I started to feel the symptoms, I figured they were just part of the stress and annoyance that Cox had put me through and hoped I would be better by morning. It got a little worse over night and I woke up with a fuller head, sorer throat and achier body (I'm surprised spell check didn't come up for any of those words).

It was not ideal that Saturday was moving day for my brother.

My mom, brothers Grant and Andrew, and I spent most of the day packing up his old apartment and getting him moved over to a new house that he is renting a room at. Fortunately for us, he didn't have a whole lot of stuff, but his apartment was on the second floor and we had to park the trucks about a half football field away. Moving him out was definitely more difficult than moving him in. I lived on vitamin C drinks, throat lozenges and tylenol that day. We got through it just fine and Andrew has quite the set-up at his new place!

Needless to say, I was dead asleep by about 8:15pm on Saturday night. That may be the earliest I've gone to bed since I was about 7.

Sunday and Monday were much of the same in terms of symptoms. Sore throat. Full head. Achy ears, etc. They were both fantastic days though! Sunday was all about family and church. Monday I traveled down to U of A College of Medicine a gave a talk about my approach to pharmaceutical health care vs that of a provider. It went well and I think I only had to blow my nose one time :) Bedtime was much of the same (down by 830 each night) and I think that has helped the most on my road to recovery.

Today, Tuesday, has been the best day so far and I'm looking forward to being symptom free in a couple of days!! One can hope right?

I just figure I'm building up tolerance before we bring germ factory number two into the picture :)

Last Week Is Over

Phew. Last week is over. I suspected once the week was over I'd be feeling better, and sure enough, I was right. Last week was a bit rough, but we made it through the week and are now just trucking along. There are still moments I think to myself (and sometimes say out loud), "It totally sucks we aren't still pregnant." And then I am done my pity party and move on. We already have a calendar of our next cycle, so I am turning my thoughts and energy to that. I have a few IVF and early pregnancy (AKA Progesterone injection) pounds I'd like to shed before our next transfer, so I am also choosing to pour my energy into workouts and healthy meals. I don't know about others, but for me, exercise is my outlet. It's where I do good thinking. It's what rebalances my mind. It's what makes me feel a serious sense of accomplishment during my day (that sounds a bit pathetic when I actually say it, but oh well, there it is). So my workouts are working double duty - getting my body back into shape after taking it easier for 1.5 months and helping my mind reset itself.

With all that said, we had an AWESOME weekend. Ronnie's mom and brother (Grant) were up this weekend helping his other brother (Andrew) move from one house to another, so we got to spend a lot of time with them. It is always nice to have them around for the weekend. Mckenna is always SO happy to have "Ma ma" here (her version of grandma). She got to play with grandma all weekend long and loved it. Because the weekend was "work" focused, trying to get Andrew moved, we didn't do anything too awesome or exciting, but just having them around to hang out throughout the weekend was really, really nice.

All weekend I couldn't help but think about how blessed we are. We have such a wonderful family on both sides, we were able to be outside a lot in beautiful spring weather, we got to enjoy a nice lunch out on Saturday afternoon, Mckenna and I spent hours singing and "dancing" to ring a round the rosy, Ronnie, Mckenna and I got to take a couple early morning walks this weekend while sipping on Starbucks. All in all, I felt so blessed this weekend. And I'm glad I actually took the time to choose to see all our many blessings.

When less-than-ideal things happen in life, I find it's easy to let them eclipse the other many blessings I have. So this week I made it a point to think about all the blessings that surround us. We have a freakin' awesome life and this bump in the road will be just that in a few years. I refuse to let it eclipse our lives in the short term, waiting until time and circumstance change in a way that brings life back into focus. I am choosing to focus on this as just a little hiccup in our journey and that God has a different and BETTER plan for our lives. I am choosing to focus on and cherish all the many blessings we had before and after last Tuesday. Our life is just as awesome and we are just as blessed, we are just on a different journey than we thought before last Tuesday!