Mckenna "Strolling"

Not sure what's better - Mckenna's steps or Mandi's song.

Thankful Thursday: Adaptable Baby & Turkey Tacos

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 supportive husband. My grandpa was hospitalized for pneumonia and since we don't have family near him, my brother and I fly out tonight to spend the weekend with him so he has company. I am so thankful that I have a husband that is willing to be on daddy duty all weekend long, at the drop of a hat. He is always willing to pick up my slack when I need it!

I'm thankful for an adaptable baby. Mckenna is such a great sport! Before yesterday, she had never had formula. When I decided Tuesday that I was flying to see my grandpa Thursday night, I knew I wasn't going to have enough breast milk to last her all weekend. I'll be honest, this gives me total anxiety and it kills me!! Formula is perfectly fine and I know it's what works for some families, but I am a passionate breastfeeding momma, and the thought of giving Mckenna formula after 10 months of straight breast milk felt a bit awful and I hated it. I was also nervous she may not take it. So yesterday we tested out a bottle of formula for one feeding. I made the bottle, gave it to Ronnie, and held my breath. She drank it down no problem...happy as a clam. PHEW!! I am so thankful.

I'm thankful for breast pumps. Do you notice a trend this week? Ha! Once I realized I was leaving, I transformed myself into Bessy the Cow, to attempt to get as many bottles of breast milk as possible for Mckenna this weekend. I have pumped as much as possible (even in the middle of the night a couple times). I don't know what I'd do without an electric pump!! I am so thankful that I have that option!!

Ronnie's List:

I'm thankful for clean eating. Part of my new challenge or "lifestyle change" if you will is to eat more "clean". That simply means avoiding processed foods and focus on food that are natural - either by animal or from the ground. I can feel the "lighter" effects already as I don't feel so sluggish and my bloating has significantly decreased. On a side note: My poops have been amazing :)

I'm thankful for ground turkey, whole wheat tortillas and the Santa Fe mix. This has become my favorite meal throughout the day and I'm so happy that my wife suggested it. The Santa Fe mix is a mix of corn, peppers, onions, etc and tastes great on top of the turkey. I eat the "turkey taco" around 2:30pm each day and boy do I look forward to it!

I'm thankful for family close by. We've mentioned this before, but my brother-in-law and sister-in-law live about .4 miles from our house. Lately, we've been taking afternoon bike rides over there to hang out with Uncle Josh and Aunt Chrissy. It's been nice to just hang out and relax with them each day.

So, what are you thankful for today?

The Importance of Water

One thing I can tell you for sure from working with many in the CF community on better health plans - as a whole, we don't drink enough water. This doesn't come as a big surprise as most Americans, by a super large majority, don't drink enough water either.

I can't tell you how much better I feel on the days that I get my water needs met. And until you make the commitment to drink the amount of water you need, you'll have no clue what I'm taking about. Every single person that I have convinced to drink more water has never regretted it and in fact, ended up embracing the lifestyle change.

I ran across this article about the importance of water and I wanted to share it with you guys.

Getting enough water is the single most important thing you can do to live a healthier life.
But are you getting enough? And are you drinking the right kinds, at the right times? It is estimated that over 99% of Americans do not get the proper amount of water their body needs. Did you know that water contributes to everything from a healthy glow to your skin, to transporting oxygen and nutrients to your body’s cells?
Many health problems we treat by simply popping pills, can be solved by getting enough water in your system daily. This article aims to tell you everything you need to know about water, so read on and feel healthier!
The FormulaThe age old “eight glasses of water a day” works great for some people, but not all of us. Instead, we have supplied something a little bit more customized to your body type. Simply take your weight (in pounds) and divide it by two:

__ lbs. / 2 = ___ ounces a day.

So for example take a 120 lb female. Divide her weight by two, and you have 60 ounces of water a day. Keep in mind that this is total water intake, and there are many foods with a high water concentration. To be safe, you should drink eighty percent of this in pure water. So using our female example again, 80 percent of 60 ounces is 48 ounces, or six eight ounce glasses of water per day.Your Body, and WaterWater is vital in our body, and a lack of it certainly has its consequences. Your body is roughly 70 percent water. The build of your muscles are about 75 percent water, blood 82 percent, brain cells 85 percent, and even your bones are 25 percent water. Your body looses approximately two quarters (64 ounces) of water per day through urination, perspiration, and even exhalation. The average adult can last as much as seven weeks without food, but not much more than five days without water.
F. Batmanghelidj, MD, highlights some main benefits of keeping your body well hydrated in his book titled “Water for Health, for Healing, for Life”:Water being the main lubricant in joints, helps prevent arthritis and back pain.
Water increases efficiency of the immune system
Water prevents the clogging of arteries in the heart and brain, thus reducing the risk of heart attack and stroke.
Water is needed to efficiently manufacture neurotransmitters in the brain, including serotonin and melatonin (for hormones). It also improves are attention span, and can prevent attention deficit disorder (ADD).
Water prevents memory loss as we age, reducing the risk of degenerative diseases such as Alzheimer’s.
Water reduces the effects of aging, making our skin smoother and giving is a sparkling luster.

Health Complications Caused by DehydrationWhen your body is not getting enough water, it will ration what it has. There are five primary organs your body hydrates above all else, and they are your brain, heart, lungs, liver, and kidneys. Thus your non-vital organs will often suffer from a lack of water. Signs tend to manifest first in your skin, joints, and gastrointestinal tract.
Arthritis and joint pains are common signs of not getting enough water. The cartilage in your joints provides a nice smooth surface for your joints to glide across during movement. Cartilage itself is eighty percent water, and is five times slicker than ice. Well, that is a well hydrated joint. When your body is not getting enough water, one of the first places it puts on a rations list is your joints. Less lubrication equals greater friction. And over time that friction causes your joints to degenerate quicker, eventually leading to arthritis.High blood pressure is another sign. Instead of spending money on medication, why not try drinking some good old fashion water? Think of a garden hose, when you constrict it at any point, the pressure flowing increases. Your body does the same thing. When dehydrated, it restricts blood flow to less important organ, which may cause an increase in pressure.Digestion problems. Do you suffer from heartburn, indigestion, or constipation? Do you constantly intake medications such as Pepcid or Tums? Your stomach has a lining on it that should be 98 percent water. This lining contains bicarbonate, which protects against stomach acid. Drinking enough water ensures a thick layer to protect our stomach lining from damage. However, not getting enough water will cause it to thin out, causing many of these problems.Water Keeps you YoungYes you read that right. Getting the proper amount of water each day will keep you looking and feeling young. For one, drinking water helps you loose weight. Not many people know this, but hunger pains and thirst pains are nearly identical, so many people eat when they should be drinking. Assuming that you are dehydrated, you body will carry extra “water weight” because it is unsure when it will get some next, and it wants to be sure it has enough to survive. This is caused by the hormone aldosterone, and its main job is water retention. However keeping your body well hydrated dramatically decreases this emergency storage, so you are not carrying around extra weight. Emerging research shows that dehydration also contributes to a low metabolism, which in turn causes your body to store up more fat.Water revives your cells, and keeps them alive. Roughly two-thirds of your body’s fluids are on the inside of cells, and the other third are on the outside of them. The first sign of failing health is when the fluids shift from the inside to the outside. After this happens, cells do not have enough energy to maintain the membrane pumps inside them, causing the cells to die. Likewise, when there is more water on the outside of cells than there should be, your blood vessels compress, causing less nutrients and oxygen to be delivered to them. Everything from your cells to the largest organ in your body, your skin, suffers.Did you know a lack of water contributes to memory loss? Your brain cells are eighty-five percent water, and your brain itself is the only organ that never rests. It is safe to say that your brain is the single most important organ to be sure is well hydrated. Ensuring it has enough water guarantees the production of new brain cells to replace damaged ones, as well as being sure the brain is working to its full potential. Many doctors today believe that long term dehydration contributes to Alzheimer’s disease.When is it best to drink water?There are two big mistakes many people make here. One is drinking when your thirst, and the second is drinking with a meal. A dry mouth is actually one of the last signs of dehydration, and when you experience it, you are already mildly dehydrated. When you drink with a meal, you are washing down all the hydrochloric acid in your saliva, and enzymes in your stomach. What results is a poor digestion process. Don’t get us wrong, you need to drink some liquid during a meal, but no more than six – eight ounces.
Here is a good schedule to follow, adopted from Don Colbert, MD’s book ‘The Seven Pillars of Health”:Start by drinking eight – sixteen ounces of water before breakfast (There is no need to replace the juice, tea, or coffee you may drink in the morning. Instead, enjoy the water with your choice beverage.)A couple hours after breakfast, drink another eight – sixteen ounce glass of water.Again, a few hours after lunch, drink another eight – sixteen ounce glass.Thirty minutes before dinner, drink sixteen – twenty-four ounces of water.About an hour before bed, have another eight ounce glass.

So what do you think? Are you ready to go and pound the water?? You won't regret it if you do, just be prepared for many more potty breaks :)

Two Sides of the Coin: Great Conversation with Fellow Fibro

Many of you, if not all of you know Josh Mogren. If you don't, you should. He's done amazing things for this community and continues to be a great example for all. He's done an especially amazing job teaching the younger cysters and fibros how important it is that they take care of themselves and presents that message through his buddy Moganko. Josh also has a blog called "Welcome to Joshland".

With that said, he wrote a blog yesterday, which was wonderfully written by the way, about his thoughts on sharing PFT numbers. While I agree with everything he wrote, I stand on the other side of the issue. Nevertheless, we had a great conversation in his comment section that I wanted to share (there may be more posted, but at the time this blog was published, that is all that is there). You get both sides of the coin, and you can see two fibros, who don't agree on the means, agree on the ends, in a very loving and respectful way :) 

He's a very valued member of this community and I'm thankful there are guys out there who I can be a Robin to their Batman. They didn't always agree right?

*****
Read his blog HERE and my first comment starts below with his responses in grey.

I agree with almost everything you said, J-Mizzle. With that said, I still don't think sharing numbers or asking someone their FEV1 should be a no-no. There is a lot of truth in being able to do things at 75% that you can't do at say, 35%. There's also truth in that it's harder to go from say 40% to 50% than it is 80% to 90%. If someone comes to me with an exercise question, knowing their lung function is pretty important.

Here's why I'm specific and say my numbers. I'll use myself as an example, if I said my PFTs went up since I recommitted my life to exercise and treatments, but didn't give my number, I feel that it doesn't make as much of an impact. "Many people couple think, great, they went from 85% to 90%. Doesn't sound worth it." or "You were much healthier than me I'm sure". For me, that doesn't tell my story.

My story is - Well, I started at 50% and achieved that number after 52 days in the hospital and coming in with an FEV1 in the 20's. Then, after two years of working my butt off, never missing a workout session and doing 3 to 4 treatment sets a day, every day, I got to a 75%, a number that I hadn't seen since 2003. (Yay, run-on sentence!) 

Point is, sometimes numbers provide context. And sometimes, context is important.

I'll end at this - I'm also a little sensitive to this topic, as it relates to publicly sharing personal stuff, when a fellow community member asked me to stop posting pictures of my family and house because not everyone in the CF community can be happy and have a family. I thought then, where does that end? Should people not post pictures of green eyes because someone in the community may want them but can't have them? 

All that to say...I appreciate and respect where you are coming from and your perspective has certainly been formed through a very valid and real situation. I think it's great that you don't share your numbers and I don't think you should at all feel compelled to. Thank you for writing this.

And yes, it is only a number!

Ahhh Mr. Sharpe....I figured you'd chime in on this one. :-)
As I said at the very beginning of the post, if people want to share their numbers, then that's fine. I know that it helps some people and motivates them to a healthier lifestyle. 

Personally, I'd rather hear someone say "I was able to increase my PFTs by 20% by doing X,Y and Z." because I'd want to know how they did it. This is especially important to me since there are so many different environmental, physical and genetic factors that contribute to how CF manifests in our bodies. Bottom line is, one person's FVC and FEV1 is irrelevant to another. 

More importantly, my sister represents a lot of people in the CF population who work really hard to take care of themselves and still struggle to breathe. They spend more time in the hospital despite busting their butts. Your numbers would mean nothing in the context of Angie's situation because CF is different for everyone. 

Much respect to you, Ronnie.

Totally agree with you. One person's lung function is totally irrelevant to another just as one person's CF is as well. It's funny, I agree with you on everything, we just have different opinions. It's weird how that works :)

And I understand that my numbers would mean nothing in context of Angie's situation, but they could mean something to 1000 other people.

Here's what I've learned - No matter what I say or how I say it, people are going to agree/disagree and love/hate me. The only I promise to anyone who listens to a word I have to say is honesty, and to stay true to who I am.

It's also important to point out that the knife cuts both ways. Their are those in our community who don't share their improved or high numbers, or hardly anything else for that matter, for fear of being judged or slighted by those who view themselves as "less fortunate".

To me, that's just as big of a travesty. No one should ever feel guilty about good health.

Love this conversation.

I agree with you, the knife does cut both ways. Which is why I wrote this in the blog post and why I written similar thing in other blog posts: 

"No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy." 

No one should feel guilty for being healthy, but I believe it's important to acknowledge and show empathy to those who might not be. It's a sign that we're lucky to be in the positions we're in. Also...I don't think those people view themselves as "less fortunate". I think most have had a very rough run and are doing the best they can to manage it. 

If what we say helps people, then that's a good thing. We're both all about reaching people and helping them do the best they can with what they've got. We've just got different ways of doing it.

People often use that word "lucky" and it's something that drives me bonkers as well. Are some people who are "the healthiest among us" lucky, or are they working their butt off? Well, as you know of course, both. But their are far more who are working their butt off and doing what they have to do each and every day to stay healthy, then are doing nothing and staying that way. And yes, I think there are plenty who have had a rough run of it and doing the best they can to manage. There are those who can do everything right and still be sick. However, you ask any CF doctor, or refer to any study that tracks adherence rates, the picture is clear - the majority of CF patients fall into the meaty part of the bell curve in which what we do (or don't do) will positively or negatively impact our health. 

My passion comes from getting to people before they bail on treatments or make stupid life decisions. The fact of the matter is, many people "get it" when it's too late. I yearn for people to "get it" before they're staring at a low lung function or a recurring infection with no end in sight. You can in fact work your butt off when it's too late and not have any positive results. They're not impossible, but certainly much harder to achieve. 

I simply want the younger generation to make better choices than I did. Just like you :)

I'm thankful that you're such a visible part of this community and I appreciate everything you write.

And that's where you and I are different (which is okay). 

Studies are awesome and I'm all about the research and science aspect of CF. If it wasn't for those things, we'd be dead.That being said... 

For every doctor's opinion or study you give me, I can counter it with stories of real life experiences and situations as to why people with CF are non-compliant and why they struggle. These are factors that no doctor could ever reproduce in a study or write about in a paper. Many times the meaty part of the bell curve holds so much more than just the black and white cases of being lazy and not doing treatments. It's more than just statistics and numbers. 

When I have empathy for someone, that doesn't mean I cut them slack for not doing there treatments. I bust on people all the time about taking care of themselves and I have no sympathy for that. You have to love yourself and believe in yourself before anyone else will believe in you. The bottom line is we can say whatever we want to people in the CF Community, but they're the ones who can do the work to help themselves. We can't do it for them...we can only show them a path. 

My empathy comes from the things that have happened to me. The losses, the struggles, the pain have made me understand that this disease is not as black and white as people make it out to be. I can't ever be in someone else's shoes with CF, but they want my help and they need to let that our I'm here to listen. I'm here to support and do whatever I can to ease their struggles. 

I call myself lucky because I am. Lucky to have the genetic mutation that I do. Things could've been much harder on me. Angie wasn't so lucky when it came to her health and her genetic mutation. I'm lucky to have the support system that I do. Many people in our situation don't have anyone to turn to. I'm lucky to have life I do. I love my wife and my family. People think we're entitled to things like that, but that's not the case. Yes, I've worked hard to get what I want in this world and I'm damn proud of that, but a lot of it wouldn't have happened without a lot of luck and a lot of love. Life is a crapshoot and we make the best with what we're given. That's what I've done. That's what luck means to me.  

And guess what? It could all be gone tomorrow. So I do my best to be humble and know that fate, God or luck (maybe a little bit of all of them) has given me experiences and a gift to connect to people and I don't want to take that for granted. I want to show them compassion, love and understanding in the midst of a terrible illness. I want to help them believe in themselves even through the hardest of times. 

I share my story and Angie's story so that people will see what a gift life is and how truly lucky we are to be on this earth and live whatever life we're meant to live no matter what stands in our way. Hard work and luck go together in my life.
I'm very appreciative of what you do for people, Ronnie. Please don't think anything different. I respect you and your family. We just have a different path to a similar kind of success. 

I'm glad we're having this discussion.
Peaceful Things, Ronnie.

I think we could go back and forth all day on this, so I'll just end it here.

I just can't help but think about the phrase "same kind of different as me" when I think of us. Two lives, two paths, two messages, one goal. Love it.

Thanks again for all of your hard work and dedication not to only the community, but to yourself.

Likewise, dude. Likewise.

*****

The final thing I would like to point out is that all we have come to know is either learned or it's come by experience. Experience shapes our truth. Two people can have opposing views, opposing "truths" and hold opposite opinions, and both be right. We only know what we believe. What I loved about this conversation is the diversity in opinions held, yet the unification of wanting what's best for the community.

Old Fogeys Do Date Night

It was dark. We were in the car. We didn't have a baby in the backseat. Are we in a time warp? Did we forget Mckenna somewhere? We were on a date. At night. WEIRD!

Saturday night, we decided, was date night. We arranged to have Ronnie's brother, Andrew, and his awesome girlfriend, Kirsten come watch Mckenna while we had a hot (Ha!) date. Since Mckenna goes down so early (around 6:45pm most nights), we just decided to wait til she was in bed, and then head out on the town.

Let me back up a bit though, so you don't miss the pathetic parts. So Saturday afternoon we decided to start planning our date. We first thought a couple's massage would be nice (we were both sore from our workouts last week). So we called from place to place and places were either closed, fully booked, or didn't have couple's massages. So we considered a movie. But any movies that started after 7pm wouldn't get us home until after 9:30pm, which was our cut off because we have an early "set" bedtime so we are able to wake up early (part of our new workout and eating routine) without being dead tired. So movies were out. We're on a "strict" meal plan (Ronnie moreso than myself, but still eating healthy none the less), so eating out wasn't an option. And we don't "go out for drinks" so that wasn't in the cards either. We joked about "going out for our drinks" but we figured the waitress wouldn't be very happy about us taking up her table for two glasses of water...with lime if we got CRAZY! So there we sat. Losers (ha!). We both laughed at how old and boring we had become. We joked about taking a 2 hour bike ride. We thought about going for coffee at a cafe we had seen once that we made note of but had no clue if it was open or exactly where it was. We maybe had more fun trying to plan the date (mainly due to all the loser, old fogey jokes it fueled) then we used to have on old date nights.

We decided on bowling. We had heard good things about this one bowling alley, so we decided to go. I think Ronnie was eager in part because he's a good bowler and knew it would stroke his ego a bit, but I didn't let on :) When we got to the bowling alley, we realized there was also an arcade inside. While we waited the 30 minutes for our lane, we played each other in arcade games. It was a blast. Then it was our time to bowl. Ronnie totally killed me in all four of our games. He's actually a great bowler (I'm not sure if that's a compliment or an insult HAHA). One game he had 5 strikes in a row...needless to say he like quadrupled my score that game. We laughed. We snuggled (ew PDA, I know). We joked. We reconnected. It was fabulous!!! We had such a blast. I was so glad that movies were too late, dinners too unhealthy, massages too booked, and cafes too hidden. This was the perfect date night.

I know people always say how important date night is. I even know it in the back of my mind. But we rarely make time for dates these days. Ronnie and I spend SO much time together (we both work from home, and most our hobbies we do together), so sometimes it's easy to forget that dates and time spent together are two different things. It helps to see your partner in another light (dare I say more romantic?). It really helps reconnect on a different level.

Date nights are happening more often around here.

And oh yeah, Uncle Schmeegs (Andrew...we'll explain the nick name sometime) and Auntie Kirsten didn't let the house burn down! Mckenna was still in her bed when we got home, she hadn't made a peep!