Thankful Thursday: CF Wife Friends & Little Brains

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 friends. This week I spent more time with girlfriends than most weeks. It was so great having a little grown up time and catching up with them. I am so thankful to be blessed with such incredible friendships.

I'm thankful for CF wife friends. This piggybacks off of the last one, but I am so thankful for time spent this week with another CF wife friend of mine. There are some things that form bonds off the bat, sharing the bond of being a CF wife is one of them. The fears, the blessings, the sacrifices and the benefits are all shared. There are perspectives on life that can't be shared in the same way with anyone else. We had one of the best conversations I've enjoyed in a long time and I feel so blessed to be able to share life together so openly.

I'm thankful for extra miles. This week I've upped my miles a bit, and I'm thankful for some extra time spent running. It's been a blessing to just get out and listen to music and feel the fresh air in the mornings. I can't wait til it cools off a bit, but for now, I'm just happy to be able to run more to get some extra fresh air.

Ronnie's List:

I'm thankful for little brains. With every day that passes, it seems like Mckenna is using her little brain more and more. You can "see" her problem solve. You can "see" her process the different options in her mind. You can "see" her search her brain for the right word in the right sentence for the right moment. I always knew that I'd like this stage, but I think I like it even more than I had imagined.

I'm thankful for dialogue. Yesterday's blog by Julie started some great dialogue both on the page and my FB page. It's always good to see differing opinions and read explanations as to why someone feels the way that they do. It's also great to see someone open to changing their opinion based on the solid argument and opinion of another.

I'm thankful for trail mix. I'm sure I've been thankful for this before, but I just had to say it again. The trail mix (fruit and nut) that we get from Costco is seriously too good. It's too good because I can't stop myself from eating and the only time I don't have more than I should is when it's not in the house. I'm kind of looking forward to finishing the bag so I no longer have an option...but then again, I'm also kind of sad at the idea :)

When The CFF Gets It Wrong

by Julie Desch and found on her blog "Sick and Happy".

Six months ago, the National Cystic Fibrosis Foundation announced an update of their infection prevention and control policy.  As stated on their website:

• Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
• Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.

As stated by the CEO of the CFF, Robert Beale, the intent of the change of policy was “… we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”

At the risk of incurring the wrath of what most in the CF world regard as a beloved organization run by those with only the best intentions for all of us with CF, I would like to respectfully disagree with Dr. Beale, and the Infection Prevention and Control Committee charged by the CFF to come up with an updated and revised version of the 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.

Don’t get me wrong.  The CFF does an amazing job raising money and awareness in the fight to cure CF.  The millions of dollars raised by over 75 chapters and branch offices of the CFF provide the ongoing gravitational force that has led to a tidal wave of new discoveries and lately, some promising new treatments for a disease that we all love to hate.  There is no doubt that the fight to cure this ghastly disease would be nowhere near the finish line, as it appears to be rapidly approaching now, if it were not for the Cystic Fibrosis Foundation.

Indeed, the Foundation is lauded for birthing the concept of “Venture Philanthropy,” in which non-profit fundraising organizations provide funding for small pharmaceutical companies to develop new drugs for orphan diseases…companies that would otherwise be unable to do the necessary research.  The idea is brilliant, and the proof of concept is none other than Vertex Pharmaceutical, maker of Kalydeco, AKA Blue Lightening, or as I like to call it, The Little Blue Pill That Was The Beginning To The End Of CF As We Know It (I need to work on an acronym).  Bob Beale and his team deserve abundant credit for this.

But, you and I are a big part of the fund raising process.  We fund raise.  We educate others.  We tell our stories.  When we were younger and cuter, they were our pictures on the fund raising literature.  After all, this is about us, right?  Yet here is where the CFF has completely left us out of the equation.  We are SO far out of the equation, in fact, that the concept that we might actually be able to decide for ourselves if we want to risk attending a CFF event has not even been considered–at least not that I can discern.

Instead, the CFF will be introducing at their next annual conference, a 92 item document, listing all of the ways adults and children with CF should be protected from cross infection.  Note that the passive nature “be protected” as opposed to “protect themselves.”  I mean what I say and I say what I mean.  This document covers everything from telling us to avoid construction sites to containing our secretions.  They include the directive to avoid all social contact with each other, to avoid car rides with each other, to not share utensils, to stand no closer than six feet from each other if we are outside, and to please not exercise together (they didn’t say please). The Foundation has no hesitancy telling us what to do.

Generally, I can take this all with a grain of salt and know that they are in fact, simply doing their job, and attempting to educate us about the risks that we face when we come in contact with another person with CF whose lung microbiome is different from ours.  NEWS BREAK: Bugs might mix and match, and we could end up on the wrong side of that equation.  I am well aware of that, and I don’t intend to hug you the next time I see you (I am assuming that you, dear reader, have CFTR “issues” as I do).  But, perhaps there are a few of us out there who didn’t see Grey’s Anatomy, and don’t yet know that we are all co-pariahs and need to avoid each other like the plague.  If so, I’m sure the new edition of the best-selling Infection Control Recommendations for Patients with Cystic Fibrosis will not be for naught.

But when they specifically mandate my behavior, I get pissed.

To read this rest of this blog, please click here. You'll want to read the rest of this!!!

Note from Ronnie: Full disclosure, I love Julie Desch. 

Top Ten Tuesday: Things Learned Through (and Loved) About Running

It's not Monday, but I'm (Mandi) posting anyways because when I posted yesterday I realized the last post before mine was Thursday's...clearly Ronnie needs a little back up.

I have been re-inspired to run the last month. We have been doing our HIIT classes the last 3 months and I have put running on the back burner, but while on vacation I went on a couple long runs by the ocean and fell back in love (does anyone else have a love-hate relationship with running?) I also did that half marathon last week, which drove me to want to step up my running game. I decided this week to increase my miles and enjoy some time with my feet on the pavement. Here are the top ten things I have learned through running and that keep me in love:

10. Practice makes perfect. Very few people can lace up their shoes for the first time and go for a long run. It takes time. While I love things that I'm good at, I also love a challenge and knowing that I can continually get better at something.

9. My body will adapt. I once had a soccer coach tell me that, "your body is unlike any other machine, it will adapt to the stresses you put on it." This has been one of the most monumental statements in my life. I repeat it to myself during long runs. I encourage myself with it when I'm in our class and it feels like I can't do another clean and press or another burpee. I tell it to myself when I don't feel like working out. Because I know that if I push myself I get better, but that the opposite is also true. If I sit around, my body will adapt in the wrong direction. Running has showed me this without fail, every time I step up my running, I can run farther and farther.

8. My brain is more powerful than my body. There are times when my body screams to stop. To walk. To take a shortcut home. But somehow my mind can overpower what my body is telling me. I have to admit, the positive self talk in my head is something I rarely share with people, as it may be some of the most embarrassing mental dialogue of all time. But it is incredible what your body can do when your mind tells it that it will be done. I may or may not think to myself "legs engage" before a big hill. There's a chance I have "raced" the mailman down a stretch of road while trash talking him in my head, "I'm on foot and keeping up...what's up now?!" (Please erase that from your brain). I repeat over and over, "you're not in pain, you're just tired. Being tired isn't a good enough excuse to stop," probably 35 times on any given run. It works every time. #Brainsareawesome.

7. I will never be the best - and that's ok. I know I will never be the best runner on planet earth. For a type-A who's a perfectionist, not being the best at something makes me uneasy. I am driven by success. I like to be the best (yes, I said it...and I know I'm not alone, so no snickers, peanut gallery). But running is one thing I know I will never be the best at. I will never win a race. I will never be the fastest or be able to run the farthest. There's something healthy about being forced to sit in the middle of the pack - and learn to feel comfortable with being average.

6. I am intense. I am certain my husband, brother, and parents all just laughed reading that. This is no secret. I'm pretty sure even my dog knows this about me. But running has taught me just how intense I can be. I can push. I can feel like I'm about to faint and still put one foot in front of the other. In fact, Ronnie refuses to run with me, in part because of my intensity...but also in part because...

5. I can be happy even if I'm not comfortable. No one likes that person during a tough workout. I am that person. I have learned in a big way through running that my feelings don't need to be dictated by how I feel. If I'm uncomfortable, it's healthy to be joyful in the place you currently are. Running had taught me to be comfortable with discomfort. To look around at beautiful surroundings while my body aches. To thank Jesus for two legs that burn. I have tried to let this bleed into other aspects of life. In fact, I know for certain it is learning this lesson through running that allowed me to joke throughout my unmedicated birthing process - the reason I was giggling and smiling between pushes. Through running, discomfort never became an excuse for a bad attitude.

4. People bond over shared interests. Ground-breaking? No. But seriously, how cool is it that two runners passing on the street almost always smile or wave at each other.

3. The best thinking is done alone. Sometimes the world is noisy. We live in a world of constant communication and influence from others. Running allows time alone with me and my thoughts. And my best thinking can be done when I'm alone with my thoughts.

2. I'm competitive with myself. I am a competitor. I like a good competition. I really love competition with myself. I like to better myself. I like to show the me of yesterday what's up. Running has showed me this through and through. It kills me if my run today was slower or shorter than yesterday. I've learned I really can refine myself more through competition with myself verses with others. I can't always be better than others, but I can always be better than I was yesterday.

1. My body is a gift. I have been given all the tools I need to be active. I have been given a machine that will get up and move. We all have our insecurities about our bodies, but when it comes down to it, if I'm capable of getting out and running, I know I need to thank God for what he has blessed me with.

A Love Affair

This weekend Ronnie was out of town for a speaking gig, so Mckenna and I kicked it at home, just two crazy girls living the dream! The weekend was surprisingly smooth. Ronnie and I joke that Mckenna may be built for a single parent. She seems to do better when she's with just one of all us day (vs. how we usually do it, splitting the day in two). Perhaps she just knows that she can get away with less because, at least mom, doesn't have the patience for a day full of shenanigans, but my guess is it speaks to the power of more undivided attention (look out if there's another Sharpe in the future, she may STRUGGLE). Regardless, she does well with a day or two of focused mommy or daddy time. So she was quite the companion this weekend.

On Friday night I put her down and did my usual routine when Ronnie travels: sat on my tush engulfed in the endless vacuum that is the internet. I saw on Facebook a friend posted a music video her friend had made, "based on the blog, 40 days of dating." Being the hopeless romantic that I am, I decided to see what the blog was. I went to it, and I fell in love. The premise is that two friends found themselves single at the same time and decided to try dating, for 40 days. They set rules. And then they started blogging about the journey. It is SO addictive and so fascinating. For those who don't know me personally, I love to psychoanalyze people. Yes, I'm one of those people. Forgive me ;-) I love to read between the lines. I love to figure out what is really driving people. I enjoy watching someone's past manifest in their future. I love it all. The crazy awesome part about this blog, is that they both blog their perspectives, but they don't see what the only one has written (as they both have a scribe). It is the most fascinating look into dating that I've seen. You see how they talk past each other. You get a look into how the other is (over)reacting based on how they think the other feels...but are usually way off the mark about the other's feelings. I read the whole thing. I couldn't stop. It is also cool because they are both artsy types who love creating. They live in NYC. They illustrate the blog. They post creative videos and pictures they've created. It's just a look into two types of people and lives that are so different from my own. I read the whole blog, "cover to cover"...I devoured it.

It got me thinking. What would happen if I brought this experiment into my marriage? No, Ronnie and I aren't dating other people for 40 days (although I'm certain it would add a bit of drama to this otherwise sleepy blog). Instead, I've convinced Ronnie to "date me" for 40 days (even though he hasn't stopped mocking my idea - Ha!). We haven't set all our ground rules yet, so I'm not sure how it will look, but I think it will be fun. As I told Ronnie, "this could be a lame, epic fail, or one of the coolest things we've done for our marriage." We will see how that goes...regardless, Ronnie is quite certain I have lost my marbles, as I've thrown out enough rules to make me maybe the most demanding "date" on earth. HA! We will keep you posted on that front if we have anything of note that stems from it.

Anyways, the point of the post was to tell you to check out the blog...it'll wake you up after your stop here at sleepy town ;-)