Can One Email Save Two Lives??

It has come to my attention that two girls in the cystic fibrosis community are in desperate need of our help. In this case, “help" can come in the form of an email from YOU and others in the CF community.

Here's what I know:
A couple of years ago Arkansas State Medicaid denied coverage of Kalydeco for four girls in need of the medication. Through the hard work and dedication of Beth Sufian (lawyer with CF herself) and her law partner, two of the girls were able to receive Kalydeco recently. Unfortunately, that still leaves two of the girls in Arkansas who are in desperate need of the medication. Their health is in decline, and time is limited. Action needs to be taken now!

The doctors of both girls have petitioned Vertex pharmaceuticals for a compassionate use of Kalydeco. The response to these pleas has been disappointing. Vertex’s response to the pleas was that they would meet with Arkansas State Medicaid. A meeting is good, but the medication would be better. A meeting will not stop the rapid decline in the health of these two girls. 

Vertex has the ability, under the law, to provide the girls with Kalydeco as early as tomorrow! The FDA allows for on-label compassionate use of any approved drug of which both of these girls qualify.

One can only imagine what these girls and their families must be thinking. The same family who participated in fundraising efforts that provided the money to accelerate the research for this drug, is now being denied access to it. Does that sound at all fair to you?

What YOU can do:
You can copy and paste the following text into the body of an email and to send it Charles Johnson, VP of Global Medical Affairs at Vertex. His email address is charles_johnson@vrtx.com. Let him know that this is unacceptable. Feel free to use any or all of the email provided or write your own. Please copy ronniesharpe@cox.net and info@cff.org to any email sent. 

***

Mr. Johnson - 

It saddens me to hear that Vertex is refusing to provide Kalydeco to the two girls in Arkansas; despite having the ability to provide it under compassionate use. As a community we have worked very faithfully for many years to raise funds for this very drug; for you. I understand you can’t help everyone who is denied coverage, but it would be nice to see you try. The CF community stands up and helps one another. We work tirelessly to raise these funds with the expectation they will be used to improve the health and lives of those living with cystic fibrosis. My hope is that you will serve this community like we serve each other. Thank you in advance for doing what is always right, not what is always profitable.

Sincerely, 

Your Name

***

Are you tapped into social media? You can also help on Facebook and Twitter!

Facebook:

Vertex’s 2014 second quarter financial results stated Vertex had $1.22 Billion dollars in cash.  The only drug Vertex sells is #Kalydeco. Yet they refuse to provide the drug to two girls in Arkansas who have been denied access through Medicaid, even though they can, according to law. http://ow.ly/A5NCi

#Fighttheinjustice #supplydontdeny

Two girls in Arkansas whose health is declining are being denied coverage by Medicaid for #Kalydeco, a drug which could help them drastically. Legally, #Vertex can provide compassionate use of #Kalydeco while their legal case continues. Yet they are doing nothing to help. Help these girls. http://ow.ly/A5NCi

#Fighttheinjustice #supplydontdeny

It’s important for a company to do the right thing. #Vertex is not in the case of two girls denied coverage for #Kalydeco by Medicaid. Show your support for fellow Cysters and their families. http://ow.ly/A5NCi

#Fighttheinjustice #supplydontdeny

Doing what’s right is always more important than doing what’s profitable. http://ow.ly/A5NCi #Fighttheinjustice #supplydontdeny

Twitter:

@vertexpharma Doing what’s right is always more important than doing what’s profitable. http://ow.ly/A5NCi #Fighttheinjustice #supplydontdeny #Kalydeco

@vertexpharma How can a company with $1.22 billion dollars in cash not provide the compassionate use of #Kalydeco? #cysticfibrosis http://ow.ly/A5NCi

@vertexpharma The Arkansas cysters need #Kalydeco now, not a meeting! http://ow.ly/A5NCi #supplydontdeny #cysticfibrosis

I can't thank you enough for doing this and taking time out of your busy day to help these girls.

You can read more about the girl's case here: http://online.wsj.com/articles/costly-drug-vertex-is-denied-and-medicaid-patients-sue-1405564205

Thankful Thursday: 5 Star Chef & Tantrums

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 eggs and sweet potatoes. I found a recipes online to “eggs and sweet potato hash” that I modified a bit. We’ve had it for breakfast two days in a row, and I’m pretty sure there is no yummier breakfast. Seriously, It’s like heaven in your mouth.

I’m thankful for hard workouts. One trainer in particular runs a harder class than the rest of the trainers. I love being in her class. She knows what she’s doing, pushes you, and makes it fun. There’s nothing like a hard workout to make you feel accomplished for the day.

I’m thankful for tantrums. Ok, not really. Mckenna has been quite the pill the last few days, enough to make me feel crazy. But I am thankful for what tantrums symbolize. They symbolize a little girl that is growing up and has her own thoughts, feelings and opinions…I don’t like how she shows those thoughts, feelings and opinions at times, but I am thankful that she is becoming her own little person….now just to make her express those without being a monster :)

Ronnie's List:

I'm thankful for a wife that has been on quite the tear in the kitchen. Mandi has been on fire lately creating delicious breakfast, lunches and dinners for Mckenna and I. She makes some of the most well balanced and delicious meals on the planet. When I'm trying to eat more healthy, it's nice to have the support of a 5 star chef in the kitchen ;)

I'm thankful for family time. This past weekend my mom and brother came up from Tucson to hang out with Mandi, Mckenna and me. They also came up to watch Mckenna while Mandi and I attended my mother-in-laws birthday dinner. We're so seriously blessed by the amount of time we get to spend with our families. We realize that not everyone is able to do that.

I'm thankful for Apple TV. We use Apple TV to watch shows and to entertain Mckenna quite often. Sometimes, I even forget how much is packed into that little tiny black (or is it white??) box. I think I can speak for Mandi when I say that our favorite part of the day is after we put Mckenna down for the night and are able to hang out on the couch and watch a show together.

What are you thankful for today?

What We Ate Wednesday: Egg and Sweet Potato Hash

This week was a good one for new recipes. We are trying out "carb cycling" because I'm trying to learn it to help a friend who wants to lose weight, learn it...and well, Ronnie's always a good sport. So  this week we got extra creative with recipes, and it paid off.

Here was out favorite recipe for the week (and maybe my favorite breakfast of all time):

Egg and Sweet Potato Hash

This is a recipe I saw all over on Pinterest, and I just pulled from several recipes and made up my own:

1 Sweet potatoes
2 eggs
1/3 c. of Santa Fe Medley (frozen black beans, peppers, onions in corn from Bashas)
1/2 tsp of Mrs. Dash Original Seasoning

Preheat the oven to 400 degrees. Peel the sweet potatoes and cut them into 1 inch cubes. Place cut potatoes onto a baking sheet sprayed with Pam and put into the oven for 30 minutes (or until soft) - turning them occasionally. Cook the bag of Santa Fe Medley mix for 5-6 minutes in the microwave. Fry the eggs over easy (so the yokes are still runny) while everything else is cooking. Plate the potatoes and Santa Fe Medley mix first, sprinkle some of the Mrs. Dash Seasoning, and top with the 2 fried eggs.

Total Calories: 305
Grams of fat: 10; protein: 19; carbs: 31

And presto chango, you have breakfast. Everything, but the eggs, can be made the day before and/or you can use leftovers. It is totally delicious. Ronnie, Mckenna and I all devoured it. We loved it enough to have it the next day. I woke up looking forward to the tastiness!

Easy adds for extra calories would be cheese, olive oil on the potatoes before cooking them, and avocado. Ronnie ate his with 3 eggs, and Mckenna ate hers with 1 egg. Lots of easy add ons!

Things That Make My Lungs Feel Awesome: Exercise

PSA: Video games will not make your lungs feel awesome.

As an "old man" with CF, I've figured out over the years what things I can do to make my lungs feel awesome and what things I can do, or not do, to make them feel eh, not so much. I realize that, as with everything with CF, some of these things will work for others while some may not. Here's what I do know, nothing changes unless something changes. So, if you see something in the coming weeks that you may want to try, give it a shot. A real shot. A real honest shot. I used to try and take shortcuts with my lungs when I was younger and it took me many years, and lots of pain, to realize that there are no shortcuts when it comes to health. Being at our best health-wise comes down to two things - good decisions and hard work.

So with that, here is probably the #1 thing that I have found make my lungs feel awesome...

Exercise.

You probably saw me going there. We've all heard it and we probably hear it quite a bit. But what exercise exactly? Well, the short answer is to do any exercise that you'll commit to and do consistently. For me, that has been High Intensity Interval Training (HIIT). According to the ever so wise Wikipedia, HIIT is "a form of cardiovascular exercise. Usual HIIT sessions may vary from 4–30 minutes. These short, intense workouts provide improved athletic capacity and condition, improved glucose metabolism, and improved fat burning." Did you catch that? Improved athletic capacity (ie better shape, ie in general, better lungs) and improved glucose metabolism. For those of us in the CF community, that's a win-win. Now, some of you read "improved fat burning" and thought, "My doc says I cannot lose any weight!!" and therefore dismissed HIIT as an option for you. Can HIIT promote weight loss? Yup. Does it have to? Nope. If putting on weight is a struggle for you, you can safely do HIIT but you must increase your calories. You must eat before your workout, to give your body the energy to carry you through the workout (and not burn your fat in the process) and you must eat after your workout (to aid in the recovery process and not allow your body to use its fat stores). It absolutely can be done. And, if you want an even better shot at maintaining, or even gaining weight after including some HIIT into your routine, may I suggest that you add a weight lifting routine to your schedule as well.  Again, you must eat right to take full advantage of your hard work, but it can be done! 

And back to the lungs, HIIT (or other cardio exercise) is like doing an albutertol treatment at the gym. I was actually in a study that showed this was the case. Exercise opened up the airways, and kept them open for an extended period of time. Plus, doesn't it just come back to the old tried and true phrase "if you don't use it, you lose it"? If you don't use your lung (function), you'll lose your lung function. I like to think of my lungs as a muscle I'm working out just as I would workout my chest, biceps or legs. Instead of lifting weights to work out my lungs, I'm taking deep breaths. I'm coughing. I'm pulling for air (in a good way of course!).

The hardest thing about exercise is getting starting. Most people I talk to (CF or not) don't exercise for two main reasons: time and knowledge.

This just made me laugh.

I don't think I've ever met a person who thinks they have a lot of time to spare. It's in our human nature to always feel busy...even if we're not. The bottom line is we all make time for things that are important to us. I have not been writing in this blog consistently for much of 2014. Reason? I have felt like I've had no time to devote to writing. I've felt pulled in a million different directions and didn't think I had any time to spend on RSBR. The truth, I have been busy, but I've been devoting my time to things that I either felt were more important, have the potential to have a greater impact on the CF community or things that I enjoy more. So I've had plenty of time, it's just been focused on other things. (Note: One of those is exercise which I devote about 2 hours a day to). To make time for exercise, it must be important to you. You need to find some kind of external or internal motivation for doing it and doing it consistently. If I gave you 1 million dollars to exercise daily, would you do it? Of course! You'd make the time no matter what! Unfortunately, I can't pay you to exercise (I wish I could), but I would argue that better health is worth a lot more than 1 million dollars (to me anyhow!!).

Ask Unknown Cystic if he thinks it was worth making the sacrifice to exercise every day. He works A LOT and didn't think he'd have anytime to fit exercise into his life. What did he do? He got creative! I believe they call that "if there's a will there's a way". He decided that if he was going to be working, then he'd be walking too. Check out the results he's had after walking on a treadmill during his working hours for the past year: One Year of Using a Treadmill Desk. The proof is in the pudding.

I understand that many of us can't afford a treadmill in our home, but don't let that be your reason for dismissing his story. The point isn't that we all must walk while we're working, the point is that we all must just do something. Commit. To. ANYTHING. Active.

Forgive me if I'm making it sound too easy, but in reality, it can be. It's just a matter of making it a priority and doing it. Don't have 1 hour a day, how about 10 minutes? Is 10 minutes an optimal amount of time for exercise? Nope. Is it more optimal than 0 minutes? Absolutely!

How can you get started? I'm glad you asked. Pick a time today that you're going to do something active and commit to doing it. Reading this really late at night? Pick a time tomorrow. How much time? At least 10 minutes and no more than 45 minutes. What's active? Anything that makes it harder for you to breathe as a result of exerting effort. That could be from sitting up and down on your couch multiple times to running 5 miles. Whatever it is, if you did nothing so far today that could be considered active, you'll already be two-steps of today, tomorrow (or later today!). 

This is all about improving yourself. Not being better than anyone else, just a better version of yourself. You can do it, just take the first step...of many, many steps.

Need help? Just ask. You can leave a comment here or find me on CysticLife.

If you want to get involved in the conversation, use #awesomelungs on Twitter and tweet @ me yo!! I'd love to link to any blog you write about what you do to make your lungs feel awesome. Send me a link to your blog so I can share it!!

I won't guarantee that it will be fun, but it will be worth it!!

Mandi Monday: My Favorite Mckenna Things Right Now

Being the mommy of a toddler has it's ups and downs. I never knew a little human could be SO fulfilling and bring so much joy, while being so frustrating and confusing. Toddlers are funny creatures. Their emotions change constantly and their impulse control seems non-existent. This makes them happy and hilarious 50% of the time, and crazed and confusing 50% of the time! Ha! But  even still, this may be my favorite age yet. I love that I can see the person that God gave us. Here are my favorite things she's doing right now:

Morning Ritual - Our morning ritual makes me smile just thinking about it. As I've mentioned in another post, "magic" opens her door at 6AM, and that's when she can get out of her bed. When she gets out of her bed, she carries a majority of the things from her bed (baby, stuffed animals, blankets, ice pack...yes she likes sleeping with an ice pack, etc) into the entry way (right next to her room), and sits it all onto the area rug and lays there; yelling for me. I usually do some silly dance down the hall towards her and she pops up and silly dances/runs to me for a hug. We carry all her stuff to the couch, where we snuggle and watch cartoons (usually Peter Rabbit) while I feed her cereal and milk (she could feed herself, but I'm not willing to get milk all over and couch! Ha! So I hold the bowl and pass over a spoonful from time to time). We continue this fun-fest until Ronnie gets up, and we make us all eggs and get on with the day.

Random Kisses - Mckenna is such a little lover, and one of her favorite ways to show love lately is through random kisses, usually on my forehead or the top of my head as I'm sitting next to her. It makes my heart so full when I feel her little lips on me.

I Miss You - Mckenna lately says, "I miss you, Mommy," or "I miss you, Daddy," a lot...even when you've been with her all day long. We aren't totally sure, but we think it's actually her way of just saying "I love you" or showing love and affection, even if the statement doesn't quite work. It's so sweet.

Bedtime Chatter - Mckenna, like most toddlers, has started the old bedtime stalling routine. She needs everything just so, the nightlight color just right, the books read, the sheets snuggly, water sipped, etc. Her newest? Chatting. She wants to discuss all sorts of ponderings she's ever had...from bulls we saw 6 months ago, to my grandfather's funeral, and everything in between. She knows she can add at least 3-5 minutes, and so she goes into question and statement overdrive. It can get frustrating, so I've just rolled back the time we head to bed a few minutes because, well, I kind of enjoy that little extra window into her brain.

Tracing - Mckenna started school last week. They have started tracing letters. Day one, Mckenna and I sat to do her homework, and well, it was almost scary. She had the attention span to do about 1 mm worth of tracing, and them would just scribble all over. I thought to myself, "oh boy...this may be bad..." but sure enough, 2 days later it was a whole different story. I say writing books in the dollar bins at Target, so I bought them and figured some extra practice wouldn't hurt. That night, she sat tracing as I made dinner, and to my shock, she stuck with it until she had traced all the letters on the page. I don't know if I've ever felt so much pride. You could tell she had tried her very best, and was so proud of herself when she was done. My heart exploded when I looked at the determination in her pen strokes...it may not be "perfect" but it's one of the most beautiful things I've seen!!

Thankful Thursday: Roomba & Almond Milk

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

Mandi's List:

I’m thankful for new life. One of my best friends had a baby on Friday…a sweet, adorable little boy, Jackson. I am so thankful for new life and the blessing of seeing a great mom and dear friend hold her new love in her arms.

I’m thankful for asparagus. I love it. A lot. It’s so yummy. We usually bake it in the oven with some spices on it, and man, they are delicious!!

I’m thankful for Roombas. We have a Roomba and it’s amazing. To have a little robot vacuuming while you are gone, working, sleeping, etc, is incredible. I love that little robot…and hearing Mckenna say, “oh, excuse me, robot."

Ronnie's List:

I'm thankful organization. I've never quite realized how much of a task based and organization freak I was until recently. As life has grown busier and busier, I've found that I need more and more structure to be successful. Thankfully, we live in a day and age that organization help is only a click away.

I'm thankful for help. Running CysticLife takes up most, if not all, of my "free-time". I'm so grateful that I've had some awesome folks in the community step-up and offer to help recently. My only goal is to do whatever is best for the CF community and put them in a position to succeed. It sure helps when I have some other peeps backing me up!

I'm thankful for Almond Milk. I decided to go dairy free a little while back and needed an alternative to milk/cream for my coffee. I bought soy, almond and rice milk because I figured it would be good to give them all a try. Truthfully, I prefer the taste of rice milk (too high of calorie) or soy (too many articles talking about too much soy being a bad thing), but landed on Almond Milk because of it's balance of taste, health benefits and low calories. Considering I only drink water and coffee, I go through quite a bit of Almond Milk each day!

What are you thankful for today?

Tasty Tuesday: Nachos

As I mentioned in a post last week, we are going to try to share more recipes on the blog because, well, we don't have a lot to say every week, but we do eat a lot, so why not feed the blog with our food too ;-)

One thing I'll note is that many of the meals we make are "low" in calories, but I will try to primarily share recipes that have good options of how to make them higher in calories and/or fat.

Nachos

28g Mild Green Mojo Multigrain Snack Chips by Late July Organic (found at Costco)
1/2 c. bagged salad
1/3 c. Santa Fe Medley by Steam of the Crop
1/8 c. Stinkin Good Green Chile sauce with Pork
4oz Shredded Chicken by Del Ray

I put the chicken, santa fe medley, and green chile sauce in a bowl and heated it up. Put the chips on the plate, hot mixture on top, and topped the whole thing with the lettuce.


Total Calories: 295
Recipe Breakdown - Fat: 8g; Carbs: 29g; Protein: 29g




Who doesn't LOVE nachos? These are really delicious. They chips really make the meal. They are really flavorful, and I encourage you to pick up a bag next time you see them (we got ours at Costco). We tried them for the first time this weekend as a sample while we were there, and I couldn't pass up buying them. They are like those chips "with a hint of lime", but 6 times more awesome.

Some additives to make this higher in calories would be the obviously things like cheese, sour cream, guacamole, black olives, you name it.

No Such Thing as Defective

There are some sermons that really resonate with me. Yesterday was one of them. The pastor was in Judges 3, and telling the story of Ehud. Long story short, Ehud was able to take down a bad ruler, Eglon, king of Moab, because he was left-handed...which was thought of as a defect in those days.

The sermon focused on "defects": things in our lives we see as bad, faulty, flaws, or challenges with how we were created. The pastor posed this question: "what if we stopped viewing our defects as bad, and instead as a uniqueness that helps us reach a different group of people for the Kingdom?"

AMEN!

This is precisely how Ronnie and I feel about his CF, and it's why I've never prayed for a cure.

Now, let me explicitly say that I'm not saying praying for a cure is bad. And I'm not saying a cure wouldn't be nice.

But I am saying that we feel that God has used CF to make Ronnie the man that he is, and Ronnie is reaching people for Christ that he never would have reached if he didn't have CF. We feel that God has placed Ronnie in the CF community. We believe that he has been uniquely gifted by CF. We know that people in the community and people who suffer from chronic illnesses will likely hear Ronnie's testimony differently than if he didn't have CF. We wouldn't know a fraction of the people we know if Ronnie didn't have CF. We wouldn't have some of the dearest friends that we have. Ronnie wouldn't be the laid back and appreciative guy that he is. He wouldn't have the perspective he has.

So then I sat there thinking. What if all he ever heard was that CF was bad. That his genes were defective. That he was flawed. That he needed to be cured. It made me sad. Really, really sad. What a terrible feeling that would have been. What a missed opportunity. What a tragedy to have a uniqueness that God could have used, buried in shame, guilt and fear. To go through life feeling like people wanted you fixed. And not that you were a flawless creation, intricately made by our creator so that you could serve Him in a way no one else could.

Fellow mommies, please hear my heart on this one. I want a cure for your kiddos. I want a cure for your kids more than for my own husband. And it's not because I love kids and hate my husband ;-) You lay awake at night fearing the unknown. But I get to sit seeing the other side. I get to see your future: the adult thriving and living precisely in God's will...working in a field, in a community, and in a job that he would never be in without CF. I know the man that is happy and confident in who he is. We have an incredible life...because of CF, not in spite of it.

But I am a mom. I know if Mckenna had any sort of health issues, I would want to "fix" them. I would want to take away any hardship she would be facing, now or in the future. That is what we do as moms. There is nothing wrong with hoping for and working towards a cure. But please fellow mommies, remember what your kids are hearing, and not hearing, a majority of the time. Remember that there is a God that wants to use your child, exactly as they are today. Remember that your family has been given a gift. He has given you the ability to reach people for the kingdom that you may not otherwise have been able to reach. Our job as Christ-followers is to know and love Jesus and to bring others to know and love Jesus. Our children will always face challenges. We all have unique challenges facing us and our families. Use yours. Cherish yours.

Teach your child that he/she is wonderfully made. They are not defective. They are created perfectly in His sight. They have been given a gift to do their job in this world uniquely; to do their job well. They are made exactly right. Tell them that. Tell them that even on days you hate CF. Tell them that when they lay in a hospital bed getting IVs. Tell them that when they miss out on things they want to do. Tell them that when they succeed beyond your wildest dreams. Tell them that on days you believe it whole-heartedly. And tell them that when you can barely muster the words because it feels like a lie. I get to share my life with a man who's mom told him that. A man who is able to do 3-4 hours of treatments a day and still be proud of who he is and how he spends his time. A man who misses birthdays and anniversaries because he's in the hospital, but still thanks God for CF. A man who feels blessed by CF, despite knowing he may never walk his daughter down the aisle because of it. A man that serves our Jesus better than anyone I have ever known. A man who can serve God better because of his CF.

Thankful Thursday: New Stages & Steak Strips

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

Mandi's List:

I’m thankful for new stages. Mckenna started school today. It melted my heart and broke it all at the same time to see her with her little backpack on, prancing into school holding the hand of a new friend and an old friend. Our little social butterfly will thrive in school, and it warms my heart to see her eagerness to learn and meet new friends. My prayer for her as she starts this chapter of her life is that she always remains true to who she is and that she is a shining light for Jesus - loving her peers as He loves her.

I’m thankful for workout buddies. I’ve been going to the gym some morning really early with a friend of mine. It’s nice to have an workout buddy who pushes me to work harder, yet is fun to spend time with. It’s also amazing to have an hour workout in before 5AM.

I’m thankful for time with my uncle. My mom’s brother, Brad, is in town. It is so nice to get to spend time with him. He is a funny guy who is always enjoyable to be around…he’s a great addition to family time!

Ronnie's List:

I'm thankful for my big school girl. Granted, she'll probably be in preschool for 3 years, but she was ready to get out of the house and learn! Her first day was a success and she had nothing but good things to say about her teacher and her new friends. Crazy to think that her future maid-of-honor or husband could be in the room :) 

I'm thankful for Kirkland Steak Strips. I don't know if Costco just started to carry them or maybe I finally noticed them, but they are awesome. It's not your average beef jerky. They are thick and almost juicy, and in fact, after you open the bag, it must be refrigerated. Legit.

I'm thankful for new shows. Mandi and I have been killing our downtime with a show called White Collar on Netflix. If you've never seen it, you'll probably like it. If the main character met Mandi before I did, they'd be married...if it was just a show as off camera he is in a relationship with a dude. I'm safe for now :)

What are you thankful for today?

Fun with Food

I enjoy finding fun recipes for Ronnie, Mckenna and I to try. It's always a fun challenge to find things that are tasty, healthy, and meet our dietary restrictions. Right now Ronnie and I are eating (pretty) clean; Ronnie is avoiding dairy (to see if it helps); and I'm eating gluten free (long story, but I'm giving it a go). At the same time, we like delicious food and flavorful recipes. So I dig around Pinterest until I find something that fits the bill.

Yesterday I found two winners, so we made them both.

Banana Pops

The first was a relatively healthy, but really fun snack for Mckenna (although they look so yummy, I'd consider making a variation for myself). They're cake pops with a healthy twist. They are so easy, Mckenna did most of it herself. Here's what's in them:

1 5.3oz container of Light & Fit Vanilla Greek Yogurt
1 tbsp raw honey
2 Bananas
Sprinkles

We mixed the yogurt and honey. Dipped sections of banana on cake pop sticks into the mix. And then sprinkled the sprinkles on top. Put them on a cookie sheet or cutting board covered with wax paper, and put them in the freezer until frozen (we left them in for 6 hours).

**You end up with a lot of extra yogurt and honey mix, so you could do a lot more than 2 bananas.

Crepes
This one is a winner. A delicious, delectable winner! I found this recipe on Pinterest. It makes clean, flour-less crepes (with just banana, eggs, cinnamon, and vanilla). The beauty of crepes is you can fill them with anything. I ate mine with peanut butter and strawberries inside and a sprinkle of chocolate chips on top. Ronnie had his with honey. Mckenna had hers with blueberries, and some sprinkles (it's amazing how many you have left over on the counter after you make the first snack...so I recycled them all day!)...note the side of Banana Pop on Mckenna's plate. These are seriously delicious and really healthy (depending on what you fill them with).

Both of these recipes are really yummy and have a lot of modifications you can do to add calories (for CF kiddos) or keep low calorie for everyone else. They both boast some good fats, carbs and protein.

Mandi Monday: My Favorite Exercises

Ronnie and I do what we can to keep working out interesting. Just like with most things in my life, I get bored doing the same thing for weeks on end...even exercises within our class that we take can get boring. So I try to switch it up. Within all the exercises we do, a couple are ones I always come back to because I feel they're the most effective.

Clean and Presses - I love me some clean and presses. We do clean and presses most days in our class, specifically with kettle bells. The beauty of a clean and press is that it works a lot of muscles, lower and upper body, and it really gets your heart rate up.

Straddle Jumps - We do them on a riser, 4 high. You stand on the riser, jump down so your feet straddle the bench (the narrow way), hit your tush to the bench, and jump back up. You repeat until you feel like you're going to die, and then keep going. It is some of the best cardio, in my opinion.

Plyo Pushups - We do these on a riser, 4 high, also. You put one hand on the floor, one on the riser, do a pushup, and then push off to switch which hand is on the riser and which is on the floor. You push off hard enough so that both hands are off the riser/floor at the same time. These are hard after a few sets. They get you breathing and your upper body burning.

Frog Jumps - These, for me, are one of the best ways to get my legs dead and heart rate up, fast. All you do is jump forward, landing in a squat. They are rough...especially on fatigued legs!

Burpees - I like that you can switch up burpees. I like that you can do normal burpees, or that you can add to them. My favorite is doing a burpee (putting your chest to the ground when you're down) and when you jump up, instead of just jumping into the air, I like jumping up onto a riser. The best part about burpees, though, is that you can modify them a lot of different ways, so you can keep them from getting boring.

Jack Hovers - For these you hold a hover, and you open and close your feet (like you were if you were standing up to do jump and jacks). The key is to keep your tush down and hold your torso as still as possible. I like these because they are a little more challenging than a standard hover, yet the time passes faster.

Plyo Lunges - These are lunges, but instead of just stepping back or forward when you switch legs, you jump to switch (with no stepping a foot down in between). You lunge forward with your left leg, and jump, switch so your left leg is back and right is front, and land like that. I love these because they get your legs burning and your heart rate up. I double dog dare you to try to do these for 2 minutes straight.

Running - Ok, this one is kind of obvious to make the list, but hear me out. I love running. Well actually, I love the feeling after a run. During a run, I don't really love running! Ha. Anyways, what I love about running is that you have options: long runs, short runs, speed work, trail runs, hill sprints, you name it.

There you have 'em...exercises I always come back to, and exercises we do at least once a week (most of these we do 3-4 times a week). They are good ones because most of them you can do at home. Give them a try sometime. Oh, and if you can do plyo lunges for 2 minutes straight, no breaks and WITH the jump, leave a comment and I will send you a virtual high-five because you are super human!

Yummy Summer Recipe: Quinoa Bowls

I love food. I love looking at recipes, cooking, and most of all, EATING good food. We try to eat pretty healthy around the Sharpe household, so I'm always on the hunt for delicious, yet healthy recipes. Thankfully none of us, including Mckenna, are picky, so it leaves a world of possibility. I like food that is easy, quick, and includes a variety of colors and textures, as well as being packed with healthy fats, protein, and carbs. Protein is a big one for us as I try to eat around 110g a day and Ronnie tries to eat around 180g a day.

In my daily scouring of Pinterest this morning, I stumbled upon quinoa bowl recipes (search sometime on Pinterest for "Quinoa Bowl Recipes". You'll drool. I promise). I found a million different, mouth-watering recipes for "quinoa bowls" - essentially quinoa, in a bowl, with a variety of different additional ingredient options.

This picture caught my eye (because, well, how couldn't it?!):

It linked to this recipe: 

INGREDIENTS

• 1 cup quinoa
• 1 tbsp olive oil
• 1/4 cup minced onion
• 1 clove garlic, minced
• 2 cans (15 oz each) black beans, rinsed and drained
• 1/4 cup chopped fresh cilantro

• 1/4 tsp chili powder (mild)
• Pinch of cayenne pepper (spicy)
• 1/4 cup fresh lime juice
• 1 cup shredded lettuce
• Salt

OPTIONAL TOPPING INGREDIENTS

• Grated cheddar or jack cheese
• Sour cream or Greek yogurt
• Pico de gallo or salsa
• Diced seeded tomatoes

• Hot sauce or sriracha
• Sliced avocado
• Guacamole
• Corn

I didn't have many of those things in my fridge, and didn't want to use some of them, so I did what any good fridge-scavenger would do...I dug through my leftovers and made it up as I went along...I'm pretty technical like that when it comes to cooking ;-)

In my bowl I included:

2 oz Cooked Quinoa

1/8 c Diced Avocado

1/3 c "Santa Fe" mix (a frozen bag of black beans, corn, peppers and onions)

4 oz Shredded Chicken

1/8 c Shredded Mexican Cheese

1 tbsp Organic Salsa

Grams from Fat: 13; Protein: 32; Carbohydrate: 27

Total Calories: 363

I mixed together the quinoa, Santa Fe mix, Chicken, and cheese, and microwaved it until it was hot. Then stirred in the salsa and avocado.

I thought it would be good. But it far exceeded my expectations. Ronnie didn't want any when I told him what I was making, as he had other leftovers in mind, but I could tell he had MAJOR lunch envy when he looked at what Mckenna and I got to eat for lunch. I could eat it for one meal a day, at least for a few weeks, before getting sick of it. Mckenna devoured her whole bowl (at least what wasn't on the floor - warning if you make it for a toddler: it was probably the messiest meal she's had in a long time). 

We don't very often share recipes here, but I will try to get better...as it's always nice to make a recipe that someone else has already been the guinea pig for!! 

Have you had a yummy quinoa bowl at home or at a restaurant? If so, hook a sister up with some recipe ideas by posting it in the comment section!

Thankful Thursday: Partner & Monsoons

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 a good parenting partner. Ronnie is a better daddy than I am a mommy, by far!! I am so thankful my parenting partner is not only a great daddy, but a great model for how I can be a better mommy.

I’m thankful for cheese…specifically pepper jack. It is so yummy!! I could eat it all day…but then I would weigh 2483290 lbs, so I do ration it a bit ;-)

I’m thankful for cloudy days. Summers here can be HOT, but cloudy days make for a nice little break and give us the ability to be outside more throughout the day. We’ve had two cloudy mornings this week, and it’s been glorious. Mckenna and I went to the zoo both mornings.
Ronnie's List:

I'm thankful for monsoons. I absolutely love the power and awesomeness of Arizona monsoons. They come through quickly, rain down like crazy, maybe snap a few trees in half and then they're gone! It of course cools things off in the summer, which is nice, but just taking in the storm visually is what I love.

I'm thankful for cashews. I've been snacking on a lot of cashews lately and I love every minute of it. The crispy yet soft nature combined with the saltiness is simply awesome. I probably shouldn't eat them quite as much as I do, but I do not have much self-control around them.

I'm thankful for more family in town. My mother-in-law's brother will be spending some time in AZ this summer and it's going to be very nice having Uncle Brad around. Mckenna met Uncle Brad for the first time yesterday, and I can already tell that she'll warm up fast to him. He's a fun guy and I look forward to getting to know him better myself.

What are you thankful for today?

Mckenna Monday: Big Girl Bed

Usually Monday's are my time to post updates, but Mckenna is really excited to share a new update in her life, so, here she is...

When my mommy, daddy, Nana, Papi, and I went camping, my mommy got me a special new bed, a toddler cot, for the tent. I usually sleep in a pack n play when I'm not in my bed, but mommy said it wouldn't fit in a tent. So I got a cool new bed. I practiced sleeping in it one time before we left and I did great. And then I did a good job sleeping in it when we were living like animals in the woods.

So when we got home my mommy and daddy asked me if I wanted to turn my bed into a big girl bed. I said, "WHAT? You make my bed a big girl bed!?" And they did! They took off the front of my bed and put on a little bar. Then mommy and I went and bought new sheets. I wanted sparkly sheets, but we found some blue ones that were a little shiny, so we bought those.

For a long time now my door has been opening when it's time to get up. Before I would yell and yell for them from my bed, sometimes for a long time, until it was time to wake up at 6AM. So magic started opening my door when I could get up. That way, if I roll over and the door's open, I know they'll come. If I roll over and the door's closed, I know I should roll back over and go back to sleep.

Well when we made my big girl bed, magic still opens my door. I look over and if magic opened my door, then I get up and can go into my mommy and daddy's room and if I kiss them on the lips, they wake up too. But if my door is closed I don't get out of my bed.

For the past week I have done really well. I only get out of bed if the door is open. This morning I got a little confused because I yelled and said I was awake and no one said anything back so I went into mommy and daddy's room and my mommy made me go back to my bed, but she was nice and laid with me til it was time to wake up. Hmm...maybe I should try that again! Wait, no, my mommy said, "no no no, we stay in our bed til the door opens." Well, maybe I can give it a shot. I like to try things at least once to see if they'll say, "yes" or "no."

My favorite thing about my new bed is that mommy and daddy sit or lay on it with me! Before my mommy sometimes would climb into my crib with me to make me giggle. But now every night I lay in bed, and we read my book in there! And my animals have a place to sleep too. Oh and I think it's pretty fun to get in and out all by myself!!!

Anyways, I'm really excited about my new bed!

Power Inverter for "Powerless" Treatments

This past 4th of July weekend the family and I took off up north to escape the 100+ degree heat here in beautiful Phoenix. We camped about 10 miles north of Strawberry, AZ at 7800 feet complete with tents, shelter for eating, propane, camp fires (kind of), s'mores, no bathrooms and no electricity. No electricity generally makes it tough to live the CF life as power is generally required for most of our treatment regiment. I use a inCourage Vest system and a Mobilare 50psi compressor for all 3 or 4 of my treatment sets, so for me, electricity is a must. I haven't been camping for years and years without a cabin full of 120v outlets, so I've never needed to come up with a solution for electricity before. That is, until we decided to "rough it" this past weekend.

Here was my solution:

Pictured above is the Wagan 1500W Power Inverter. I purchased it from Fry's Electronics and if you're interested in ordering one for yourself, you can see more info by clicking here. 

A brief rundown of the nitty gritty...
Price: 179.99
Continuous Use: 1500W
Peak Surge Power: 3600W
AC Voltage Output: 110V
Optimum Efficiency: 90.00%
No Load Current Draw: less than 0.95A
Input Voltage Range: 10V to 15V
Low Battery Alarm: DC 10.5 +/- 0.5V
Auto Low Battery Shutdown: DC 9.5 +/- 0.5V
Cooling Fan: Yes
AC Receptacles: Triple

Now, I bought the 1500W which was way more wattage than required to run my Vest and neb compressor. My Vest requires 500W and I'm assuming that my compressor requires much less than that. A step down to the 1000W inverter only provides two AC receptacles and I wanted the third in case I had to charge my phone or make a cup of coffee while I did my treatments :) Plus, having 1500W gave me the option to use the power inverter for a variety of other things...

Options are good

I had the inverter installed at a local shop called Direct Audio and the job was done in less than 3 hours and cost me 85 bucks out the door. They installed it under the driver's side seat with the AC outlets facing the backseat. I usually had my Vest and compressor plugged in and sitting on the ground near me while I sat in a chair. When it was raining, I simply sat in the front seat and left the equipment in the backseat. (I've also already done a full treatment set on the way to the airport while I was driving. Talk about a time saver!!)

Surrounded by pines!

Grounded.

Nice view during treatment time

When I did my treatments I always had the car running as to not run the chance of draining my battery (you also must turn the power to the inverter off when not in use). That was recommended to me by the guy who installed the inverter and it certainly made sense to me. So, as long as I had fuel in the tank, I was in the clear to do my treatments whenever I felt like it. Having the freedom to go camping and not have the worry about keeping my health as the number one priority was definitely worth the price tag of 264.99+tax.

Mckenna loves treatment time with Daddy

A couple other answers to questions I have been asked:

I didn't worry about sterilizing my neb cups in between treatment sets. I figured it would do no more harm than the 10+ years I washed them in the dishwasher about once a month. If I was worried about it however, I could have boiled water or plugged in my baby bottle sterilizer.

You can keep your Pulmozyme cold in the same place you keep your food cold. Ours was in a cooler full of ice.

I wasn't worried about disturbing other campers. We were very secluded. Even so, it wouldn't have bothered me and would have given me the opportunity for a little CF awareness ;)

I went to the bathroom in a hole that I dug by a tree. It was glorious.

I didn't feel a major difference in the power supplied to my Vest or compressor. I could possibly be convinced that my Vest was a bit weaker, but it wasn't super apparent. 

Final Thoughts:

The inverter did it's job and I would give it two big thumbs up. It will certainly provide more freedom and options down the road and I am very pleased with my decision to pull the trigger and pay the money. I would do it again in a heartbeat.

Mckenna even got in on the picture taking action!

Please leave me any questions you may have about the power inverter and I will do my best to answer them.