Thankful Thursday: Water & Helping Hands

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:

Check back in for Mandi's list

Ronnie's List:

I'm thankful for helping hands. I now I've mentioned this before, but I'm so thankful to my brothers for helping out with the garden. They've each pitched in with planting, mulching, shading, pruning etc and I've really enjoyed taking on this project with them. My brother Andrew comes over often, and he generally goes out to the garden before even taking a seat on the couch. I love it.

I'm thankful for Mexican food. If I'm ever unsure about what I feel like eating, Mexican food is generally a safe bet to choose. Now, I live in an area of the US that is chalked full of great Mexican restaurants, so maybe I am spoiled. But, it doesn't have to be "restaurant quality" for me to love it either. Mandi and I often make tacos and if I'm "cheating" and allow myself fast food, Taco Bell is almost always my first choice.

I'm thankful for acquiring a taste for water. I used to NEVER drink water away from the court, field or diamond. I thought it was boring and tasteless and really not worth my energy :) I however made a concerted effort to step up my water intake about 3 years ago, and I haven't looked back since. Nowadays, I only drink one of two things - water or coffee. In fact, I've now developed a taste for certain kind of waters over others. Never thought I'd say that! Anyway, I'm thankful that I can't get enough water now!!

So, what are you thankful for today?

The Unlikely Runner

Ran Across this article, liked it, and thought I would share.

The Unlikely Runner – A Beginner’s Guide to Running

I was that girl at school who permanently had a sick note for sports lessons. It was always ‘that time of the month’, a headache, a sore tummy, a sprained wrist… the list goes on. And my mum, faced with a palpitating nervous wreck, would diligently sign the notes excusing me from whatever team sport was on the agenda. As a teenager (and a fully grown woman) I am uncoordinated and uncompetitive.

Ball games are my worst nightmare.  I simply cannot throw or catch. So you can imagine everyone’s surprise when, at the age of 21, I ran my first halfmarathon… and my second at 22. And my third at 23! The girl who hated sports has well and truly caught the running bug. So how did I do it?

Start Small. Very Small

After failing to get excited by exercise in my teenage years, my weight started to creep up when I reached university. The only activity I did was walking to lectures, and even that got me into a sweat. Blessed with the classic pear-shaped body, my thighs were starting to reflect my leisurely life.

So on a hot sunny day, on a whim, I pulled on my completely inappropriate Converse (the only vaguely trainer-like shoes I had) and went for a jog. I ran for about a mile around the park and back again, ending up as a sweaty mess. But as I showered my red face clean, I realised how exhilarated I felt- and that was where it all began.

From then on, I went for regular, small runs around the same park. Swapping my converse for a cheap pair of running trainers (my ankles were starting to complain) and hooked up to my iPod, I would jog slowly for about 10 minutes. I learnt quickly that running flat-out would get me nowhere, so I lowered my expectations and kept within my limits. From there, the miles started to creep up.

Enter a Race

I entered my first 10k run after a couple of glasses of wine.  It seemed like a great idea at the time. Luckily for me, paying the £20 fee stopped me from backing out when I woke up the next morning (£20 is a lot of money for a student after all). So I started increasing my runs from ten minutes to 20 minutes, and then from 20 minutes to half an hour. Soon I was running 3 miles quite comfortably and I was feeling good.

To encourage me even further I brought myself some proper running clothes- being kitted out in expensive Lycra really puts you in the mood. Upping the distance to 6 miles was a challenge, but I soon learnt to ‘split’ my runs- running the first half slowly and then increasing the pace in the second half. Finishing my first 10k was a fantastic feeling.  I displayed my trophy proudly on my desk and pinned my number on the wall. Best of all, I lost around 4 pounds in the run up to the race.

Rope a Mate In

Seeing how well my running was going, I managed to persuade a friend to come on a run with me. Luckily, she was my height and about the same fitness level, so we were evenly matched. Abandoning my iPod, we began to plan our routes and start going out earlier and earlier. The best thing about running with a friend was the motivation; you can’t back out if there is somewhere waiting for you in the cold and the dark at 7am!

After another few glasses of wine one night we thought it would be a great idea to enter a half marathon (you can see a pattern emerging here). And so the next day we found ourselves with no choice but to create a training schedule, and stick to it religiously. Runner’s World has some great ready-made schedules for runners of all abilities. We had about 4 months before the race, so had to up our mileage quickly. We promised ourselves that after our first 10 miler we would eat a foot long Subway- the perfect inspiration!

Runner’s High

After my first half marathon I felt like I was walking on air. Well, actually I was exhausted, I ached, I nearly threw up, and I couldn’t walk up stairs for about 3 days afterwards (physiotherapy was covered on my health insurance, but luckily I didn’t need to use it!) But it was all worth it when I crossed that finish line and was handed my medal.

Although I wasn’t going to win any prizes for my time (I am only 5 Ft 1  and my legs are not built for speed), I did not stop to walk once. From that moment, my love affair with running really kicked off. The girl who got picked last for the team at school had run 13.1 miles, and done it in style.

Since then, I have run another two half-marathons, and I am considering entering a marathon. The best part about running is that you can take it at your own pace, and there are no team members relying on you to do well. If I can do it, anyone can, so get out there and take that first step. You may become addicted!

Original article can be found at http://www.hivehealthmedia.com/runner-beginners-guide-running/

Kalydeco: The Hope Diamond??

Guest post by Angie

Who knew such fanfare could surround such a tiny bottle of pills?  I certainly didn’t, but I do now! After I received the news that I had one G551D mutation, my clinic sent my information along with a prescription into Vertex (the company that makes Kalydeco) so they could begin the process of making sure my insurance would cover the drug.  My clinic told me that it would probably take about two weeks to get Kalydeco because of the authorization process with my insurance and the pharmacy processing time.  I had already waited 36 years, what was another 2 weeks?  Also, this wonderful news just happened to hit the day before we were leaving on a week’s vacation… so let the party begin!

About a week after my clinic sent my information to Vertex (and towards the end of vacation), I received a call from Vertex letting me know my insurance would be covering Kalydeco.  They also told me that my copay would be $250 for a one month supply.  Not really a surprise as I already pay this for a couple of my other drugs.  However, the case manager also told me that with their copay assistance program my copay would only be $15 a month!!  Now, I know everyone was suffering from a little sticker shock after Kalydeco received FDA approval and we heard how much the drug was actually going to cost.  Vertex immediately stated that no one would go without the drug.  It seems they are living up to their end of the bargain.

Once my insurance had given the thumbs up, Vertex sent the script to the pharmacy I had chosen.  There are only a handful of pharmacies that can distribute Kalydeco.  I chose to receive mine from the CF Services pharmacy.  At the beginning of the next week (after arriving home from a fabulous vacation!), I received a call from CFS to verify my shipping address and telling me that I had to sign for the drug when it arrived.  I confirmed the delivery address and was told I would receive another call just to verify the address one more time.  Were they shipping me the Hope diamond?!?!  I received the second verification call and was told my prescription would be shipped that day via overnight delivery so I would have it in my hot little hands the next day!!

I am not an overly emotional person by any means.  Some might say I’m not even a mildly emotional person.  But, the weeks that led up to Kalydeco arriving at my door were very emotional.  It was one of the most wonderful feelings in the world.  The day that I started Kalydeco was also quite a celebration.  We toasted the arrival with some tasty champagne and my husband prepared a wonderful dinner.  I decided that I would take my doses at 9am and 9pm since you are supposed to take it every twelve hours.  You also have to take Kalydeco with fatty food.  That is not a problem for me!! My inaugural dose was taken with double stuff oreos and milk.

 

Coming next week: My first week on Kalydeco!!

Note from Ronnie: If you missed Angie's first blog about discovering that she did in fact carry the G551D mutation after many years of thinking she didn't, click here. The story is quite amazing!!

Mckenna Monday: New View on the World

Whew! What a crazy past couple of months it has been. I went from a baby to a big girl. Yeah, yeah, I understand being a "big girl" is all relative, but mom says "ooo big girl" all the time and I feel like a big girl, so go with it. So here we go, I'll fill you in on why mom, dad and I think I'm SOO big (speaking of, mom never does the SOOOO big thing with me I hear other moms doing all the time, I wonder why? When I can speak, maybe I'll ask).

First things first, about a month and a half ago I started sitting up to play with my toys. I forget if I told you that already, but I'll tell you again if I haven't because I'm pretty excited about it. I spend a lot of my day sitting and playing with toys. I sit and play, I sit and look around, I sit and chat, I sit and stick out my tongue. I just like doing things sitting. Eventually I get bored and lay down, and then I just roll front to back, back to front, to get to different toys, and just because I like rolling. But I like sitting the best. I can see so much more when I'm sitting up.

Speaking of being on my tummy, I want to crawl SO bad. It's actually the source of a bit of frustration for me (sorry for the whining and moaning dad and mom). I scoot backwards, in fact, I was up in my crib in the middle of the night 2 nights ago, doing laps. I went from one end, turned around, and went to the other end. I heard mom get up and turn on the camera so she could watch me. I think maybe she found it cute and annoying at the same time. Luckily I was able to fall back asleep because my bunny blankie made the trip with me, I dragged her there and back. I also can scoot forward a tiny bit. Generally, I scootch a bit forward by locking my knees, pushing up with my hands, putting my butt in the air and pushing forward a bit with my foot. I do get my knees under me a bit (I sometimes sleep that way), but I don't know how to MOVE that way. Mom and dad work with me a lot, getting me to all fours from sitting, showing me how to move my legs, etc. But I think they are dreading me being mobile. 

OOH OH OH, I forgot. 2 days ago, I pulled myself up to stand. Apparently mom did NOT expect it because she let out a yell that made me certain she was even more excited than I was. I can't do it everywhere, right now just in my old co-sleeper. But I love it. Mom sits me near the rail, I reach and grab on, pull up, and then mom lets me stand there and play. I feel like such a big girl when I stand!

I'm also becoming pretty vocal. Mom and dad love it, so I keep it up. I started making this sound "dadada" and it's the coolest thing, whenever I say it, dad shows up. So I say it ALL the time. "I'm coming, honey," dad yells as he runs to me. Wayyy cool. "dadada"...then boom, there's daddy! I also found this high pitched squeak in the last couple days. I thought it sounded pretty cool, but then I started to really dig it because mom does the same noises back. So we go back and forth. I make a noise, and she makes it back, I make it, she makes it. I see mom and dad going back and forth with sounds - one person talks, then the other, so I'm just practicing that, but with noises and not words...I'll get to words eventually, but these squeals sound way cool.

And last thing, I have started a new hobby...gardening with daddy. We get to play with this long tube that water comes out of, and we walk around and look at things. I love the green things that are on all the plants. Dad lets me touch them, and sometimes he lets me pull one off the plant and walk around holding it. I love that time with my daddy. I love the outdoors and I love daddy, so it's a perfect combo.

Alright, well I'm going to get back to my sippy cup. I can't quite figure out how to always get water out, but it sure is fun trying!

Mckenna Giggles

This is an older video, but I figure that it never hurts to share baby giggles :)

Thankful Thursday: Routine & Mother's Day (early)

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 nursing bras. Yup, I went there. This isn't really as a result of anything that happened in the last week. But for a momma who has nursed 6 months straight and plans to nurse through Mckenna's first year, I appreciate these fine inventions. *Click*, boob out, feed, *Click*, boob hidden. Beautiful.

I'm thankful for sippy cups. They are not only a great way to have kids be able to drink without spilling all over, but they provide A TON of entertainment for kids and adults alike. Mckenna is occupied as long as the cup is in hand, and watching her use it provides laughs for any adult nearby....yes, we do laugh AT her from time to time...only in the most loving of ways of course.

I'm thankful for routine. Everyone in the Sharpe household functions better with a routine. And I LOVE it!

Ronnie's List:

I'm thankful for celebrating Mother's Day a bit early. We won't be able to celebrate with my mom when Mother's Day rolls around this year, so we were proactive and celebrated it today with her! We let her tell us what kind of food she was feeling (Chinese) and then picked a place with a little help from Yelp! The food was good, but the company was even better. Thank you for everything that you are mom - I wouldn't be alive without you!

I'm thankful that plants can be brought back from the "dead". The other morning I walked out to find all of my spaghetti and acorn squash clinging to life. It seemed to happen overnight and came out of nowhere. It's hard to describe what the leaves looked like, but let's just say that I have never seen non-dead leaves more droopy. I thought for sure that some type of bug got to them or they were just a victim of the Arizona sun. I gave them a very generous soak, and wouldn't you know it, 3 hours later, they looked brand new. I still marvel at how it all works!

I'm thankful for peeps willing to be guest bloggers. Some of the best stories on this blog are from guests whom I have approached or have approached me in order to share their story. If you missed last Saturday by the way, you should definitely go back and read it, AMAZING. But anyway, this blog would be nothing without the community involvement it gets and for that, I am very thankful!!

So, what are you thankful for today?

Because We Can

Last week, I was talking to a cyster in the community and she was sharing with me some of the struggles she had been encountering over the past few months. It just seemed that at every moment she started to turn the corner, she would get hit with another cold, or another flu, or another exacerbation. She was of course frustrated, but also optimistic. In the previous week she was battling some sort of head cold and even though it was tough, she chose to run every day. 


It wasn't because she felt like the king of the world, but it was because she could. 


She realized that she doesn't run after she becomes healthy, but she's going to run to become healthy. The last thing she wanted was for whatever was going on in her head, to make it down to her lungs. She knew that she couldn't completely control what happens with whatever sickness was going on, but she could control whether or not she was active. 


She told me that she has spent so much time on her vest that it's almost awkward. She hadn't missed a treatment, and in fact, done extra ones. She'd been focusing on getting rest when she could get rest. She was determined to do everything by the book.


Was it easy? Nope. Was it what she wanted to do? Nope. Does she have a burning desire to put her health first? Nope.


But that's the thing, there aren't many of us that could answer "yes" to any of those questions. I know I certainly couldn't. There are times when we must do something for one simple reason - Because we can.


After our phone call, I was inspired. I'm feeling pretty good at the moment, yet I find myself just going through the "exercise motions" at times. Yeah, just exercising is a good thing for me, but is it the best thing? Nope, not unless I'm challenging myself each and everyday. Going through the motions isn't going to produce the results that I am looking for. Going through the motions isn't going to increase my lung function. Going through the motions isn't going to increase my life function.


Now, for the past several weeks, I've been running the 2.1 mile loop 4 to 5 days a week. It's challenging, but it's also becoming easier and easier. Each time I completed the loop, I knew I could go further, but why, 2.1 is far enough. It's not like I enjoy running!


After talking with my friend, I got the answer to my question - Because I can.


So I decided to go for it. I went to the gym, got on the treadmill and just started to run. I didn't worry about time, I didn't worry about distance and I didn't worry about how I felt. I just ran because I could. I just ran further, because right now, she can't, but she does. 3.85 miles later I had run further than I had in about year. Not because I wanted to, but because I was capable. I ran because she ran.


She has every reason to stay at home, sit on the couch and do nothing. She has that ever so accepted excuse of "I don't feel good", yet she still pushes. 


If she can push, I can push. If I can push, you can push.


So what aren't YOU doing? What can you do today that someone else can't? What are you stopping short because it's uncomfortable? What can you do today for your health without needing a reason?


Some of us wait around until we get an answer, or until everything feels "just right", when in actuality we should be pushing forward for one reason - Because we can.

Sour Sauce?

Apparently applesauce is sour? She's a good sport, though. She keeps coming back for more. 

The Start of My Kalydeco Journey

Guest post by Angie 

On January 31, 2012 the CF community received amazing news.  The FDA approved Kalydeco, the first drug to treat the root cause of CF.  However, Kalydeco is only effective for individuals that have the G551D mutation.  I, like many other DDF508’s, celebrated the wonderful news but was still holding out for the drug that would help the mutations that I had.  That’s right… I said had. 

About a month ago I took my 2 year old son to see a pediatric pulmonologist, because just like his Daddy, he has asthma.  The doctor and I discussed the fact that I had CF and my son’s newborn screen did not come back with any genetic markers for the disease.  He thought this was very strange knowing that my son would automatically be a carrier since I have the disease.  The doctor decided to add a CF mutation panel to the labs he was already ordering for my son. 

Fast forward to one week later and I received an email notification that my son’s test results were available.  I logged on to his EHR (gotta love technology) and saw the CF mutation panel.  I clicked on the result fully expecting to see DF508 since I had been genotyped as a DDF508.  Instead, I got the shock of my life when his test showed G551D.  What?!?!  The only logical conclusion I could come to was that I must have a G551D mutation.  But, that was impossible, right?  I had a cheek swab in the late nineties during an initiative sponsored by the CFF to get everyone’s genotype into the CF portal.  It was after 8pm on a Thursday night, so I couldn’t call any of our physicians.  So, where did I turn?  The CysticLife community.  I posted a rambling question asking if there could be any other logical explanation.  Of course I received lots of wonderful feedback from the CL community.  Everyone drew the same conclusion that I had.

I contacted my clinic the next day and they ordered a CF mutation panel for me.  I had my blood drawn and the waiting began.  I was still trying not to get my hopes up, but I think it was too late.  I received the phone call on a Thursday morning.  I had just sat down at my desk at work and my cell rang.  I recognized the number of my CF clinic.  I answered and the nurse said “I have some wonderful news.”  That was all I needed to hear.  I started blubbering.  I have the G551D mutation!!! I could not believe it.  I cannot even describe what it felt like to hear that news.  I can tell you it ranked right up there with the first moment I looked into the eyes of both my babies.  This news actually allowed me to picture holding my grandbabies.  I started the ball rolling that day to have Kalydeco delivered to my door and begin my new lease on life! 

Thank you for taking the time to read my story.  I can hardly believe it when I read it myself, but I am living it every day and it is wonderful!  I will be posting weekly updates about my progress with Kalydeco.  Please feel free to ask any questions or leave comments through this blog.  I look forward to sharing my journey with you!  

Angie's BIO:
I am a 36 year old married, working mother of two beautiful children. I was diagnosed with CF when I was 7 months old. When I was 6 years old my mom decided to become a respiratory therapist. I grew up with my own private RT!!  I was first hospitalized at age 8 and so began the annual hospitalizations. In my twenties I sometimes averaged two hospitalizations a year, but its pretty much just once a year now. I went through the usual rebellion from my late teens to early twenties. Luckily, I have been able to maintain stable lung functions for over 10 years. My FVC averages around 80-90% pred, and my FEV1 is usually around 63% pred.  

Note from Ronnie: I am so thrilled that Angie has agreed to give weekly updates of her progress on Kalydeco!! Her story is amazing, and I know I for one, am really looking forward to hearing about where this story leads. I can only hope that it's not only to improved lung function, but LIFE function as well!!

Pictures from Easter

Just got around to downloading some pics we took at the Easter festivities!!

Thankful Thursday: Kidzone & Clouds

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 childcare at the gym. Ronnie and I are able to take Mckenna to the Kidzone and spend some time together pumping iron. I am so thankful that we can spend some time just the two of us, doing what we love to do together, while Mckenna plays happily with her "friends" at the gym.

I'm thankful for family close by. Monday night Ronnie, Mckenna and I popped by Josh and Chrissy's (my bro and sis-in-law) and then we all went for a walk, and Tuesday night Ronnie's bro, Andrew came by for dinner. I really love having family close by, so we can hang out a lot!!

I'm thankful for middle of the night snuggles. Mckenna is a ball of energy. She is always on the go. She rarely will just lay back and let you snuggle her. One of the only times she just lays, totally melted into my arms is during her middle of the night feeding. While getting up to feed her in the night may initially seem awful, the thought of weaning the last remaining night feed makes me really sad. I don't want to give up those snuggles just yet!

Ronnie's List:

I'm thankful for cloudy days...and I cannot believe that just came out of my mouth. So, I'm an Arizona guy born and raised, and so with that, I'm a total sun in the sky without a cloud in sight kind of a guy. But, when it starts to heat up so much, so early in the year, I'm actually thankful for the occasional cloudy day. Cloudy days not only give my garden a little break, but they also give Mandi, Mckenna and I the opportunity to take our walk at any time during the day!

I'm thankful moisture meters. I'm no green thumb. This is my third year gardening, and although I have learned quite a bit, I still have a LONG way to go. Something I read from other gardeners is that they "know their plants". Like I said, I don't think I've been in the game for a long enough time to get the vibe from my plants yet. I mean yeah, I can tell if they're severely under-watered, but I think pretty much anybody walking the streets could too. That's where my handy-dandy moisture meter comes in. I simply stick in it the ground by the root of the plant, and it tells me whether or not I need to be watering. Anything that takes some thought out of gardening is good in my book!!

I'm thankful for daytime workouts. Because of great childcare offered at our gym, Mandi and I have been able to take a break from our workday the last couple of days and hit up the gym. I love working out with my wife and I love getting my workout done and over with. Day workouts are definitely a win all-around in the Sharpe household!!

So, what are you thankful for today?

Kalydeco - Can it benefit others??

A couple weeks back, I was able to listen to Dr. Beall (President of the CFF) present about all of the progress that has been made over the years with specific focus on the new drug, Kalydeco. As most of us know, Kalydeco was approved a few months back for those among us who are rocking the G551D mutation (about 4% of the population). He's a good speaker and I can see how he has spear-headed the fundraising machine known as the CFF. He's passionate, charismatic, engaging and of course, informative.

He gave a very good illustration of what Kalydeco does for the peeps it helps, and why it doesn't work for others. Basically, he had all of us in the room (the cell) pretend we were sodium and chloride and the door to the room represented the protein which opens and closes to allow a natural exchange of different properties from within the cell to the lining of the airways. Those with the G551D mutation have a door that is stuck shut and Kalydeco has shown that it is able to open that door.

I have heard all of this before, but what I haven't heard was what came out of his mouth next. To paraphrase, he said that although Kalydeco is only for about 4% of the population now, they hope that it eventually it will be effective on between 16 and 20 percent of the population. So how could this be? Well that's because G551D is a gating mutation, or "stuck door" mutation, and there are other gating mutations out there. If a CFer's protein is on the correct place on the cell surface and the only issue that the door is stuck, then Kalydeco may work for them. (For those who are wondering - DF508 not only causes a stuck door, but the door isn't even located where it should be, on the surface of the cell). They are currently running further tests to see just how many others may benefit from this new drug.

Which leads me to my last and final point, Dr. Beall wasn't just blowing smoke. In fact, I exchanged an email with a momma in the community whose daughter is currently taking Kalydeco and does not have the G551D mutation. So is it helping her? It seems so! Her FEV1 is up 11% which is her highest in three years, and her sweat test came back almost 30 points lower. I don't know about you, but that excites me to no end. Not only of course for this young gal (who happens to be one of my favorites), but also for others who may benefit from Kalydeco.

I know it's not available to everyone who may benefit, and that sucks, but just know that they are working their butt of to see who will be able to benefit from the drug. In the mean time, do everything you can do each and every day to put yourself in the best position for the day that your "wonder drug" comes out.

True CF Awareness

I was sitting down to write my own post, and just before I clicked on the little pencil to write something, another post caught my eye in my blog roll. It happens to be one of my favorite Life Blogs written by Lauren, a kick butt cyster who I have never heard offer up an excuse. If some of you mommas out there are looking for a college-aged girl to motivate your daughter, this would be the girl to do it. She's funny, smart, athletic and just an all-around great gal! She has a "take the bull by the horns" attitude that I love, and I find myself agreeing with many of her thoughts. What's nice, is she puts her thoughts out there much more eloquently than I and I'm sure offends much less people than I do :)

Please take the time to read this post, you'll be glad you did. When you're done, visit Lauren and read all of her other great stuff at I Have CF...So What?!?!

This image has been traveling around Facebook today and it sort of took me back a little bit. This blog is not meant to offend anyone, it is just my thoughts. Though I love the CF Foundation, and though I understand that it's trying to tug at people's heartstrings in order to get them to donate... I couldn't help but think that for me, and for many CFers I know... this isn't the truth. Sure, there are many many CFers who feel like they are breathing through a straw every day, who are on oxygen, and who are awaiting a lung transplant. However, there are also many CFers who are breathing easy with CF and who haven't reached a point where it takes their breath. It is unfair to portray all people with CF as breathing through a straw, because the fact is, it is possible to breathe with CF. Sure, some days I've experienced what it feels like to not be able to breathe, to cough until I'm red in the face, etc. However, if the public thinks that this is what CF is like every day, they will be strongly mistaken. There can be healthy days. No wonder why so many parents are so confused and afraid when their child is diagnosed, because sadly, there are ads like these that make it seem that this is the reality of all CFers at all ages and at all stages of their lives. 

Every time I tell someone (who has some idea about what the illness is) that I have CF I get a familiar response. I can see the look on their face, trying to figure out how I, someone who looks relatively healthy except for the cough, has this horrible disease, like maybe I'm lying. I sometimes feel like I should to show them my PICC line scars, show them the insides of my infected lungs, take them to the doctor with me to prove its true, because most people don't understand the complexity of CF. I've had people tell me that they had friends who have died from the disease, friends who are always in the hospital, and that they thought that it was an early killer. I'm not saying that any of these instances are false or rare. CF can kill you, it can make you extremely sick.... but you can also live with CF. Because of the way CF is portrayed in order to get people to donate, some people are lead in the wrong direction. We don't see the healthy people in this ad. Why doesn't it say... "Because of all of the donations that lead to the research and new drugs the CFF has helped to bring to fruition, some people with CF DON'T breathe through a straw. Thank you." 

I also don't like that this ad tries to bring pity to the CF population. It's black background and choppy lines connote darkness. "You can stop when you've had enough. But people with cystic fibrosis can't. It's how they live every day..." What do you think when you read that line? "Oh my goooooodnesss, their lives are so horrible and difficult." And yeah... sometimes it is. But do we really need people to feel bad for us because of it? If there is anything I hate it is pity. Don't see me as someone suffering, see me as strong for getting through it with a smile on my face. Yes, I live with CF every day, and yes I am frustrated that I can't make it go away.... but don't cry for me, because I'm not crying for me. I'm doing what I can to survive, and I'm learning so much in the mean time from my hardships. 

It is important to recognize the complexity of CF.  That while there are people who are struggling to survive, who's lives are taken by CF... there are also those people who live with the illness, who's days are numbered but who have both sick days AND healthy days. The CF Foundation has created so much opportunity for people with CF, and they continue to do so. However don't be fooled by certain marketing techniques. This ad is good in that it tries to get people to understand what its like to live with CF at its worst stages... showing that there needs to be medication out there to prevent CFers from getting to that point. But at the same time, it is time that awareness comes to the forefront. Not just awareness about the bad parts of CF, but awareness of the great developments have been made, the healthy lives that have been created, and the true nature of the complexity of this chronic illness. So that new parents are no longer afraid that there child will be breathing through a straw their whole lives, so that someone that is new to CF might not see me as lying on my death bed, so that we can take even larger steps toward a cure without having to evoke pity in our donators.

Thank you so much for that post Lauren. I know that myself, and many other in the CF community, feel the exact same way.

3 Day Daddy Duty

As some of you may have seen, Ronnie was on daddy duty while I was away for work Wednesday through Friday. Needless to say, I was really nervous about leaving for the first time overnight, and not only for one night, but for 2 nights and 3 days. I totally trust Ronnie's ability to take care of her, so luckily that was never a concern. But she's been exclusively breastfed, with only the occasional bottle, I'm the one to put her down at night, I'm the one who spends the most time with her during the day, etc etc etc. So the thought of totally throwing things off kilter for 3 days made me nervous. I didn't know how SHE was going to do.

After day number one, it was clear that she was A-OK without momma. She ate like a champ, she slept like a champ and was smiley and happy as a clam. Daddy was a rockstar. He did just as awesome as I thought he would...sending all sorts of fun photos along the way. And she did better than I could have ever imagined. She even started saying "da da da da da"...about 2 hours after daddy took over. Really Mckenna?!? 2 hours just you two and you're saying "da da da"? Where's "ma ma ma" after 6 months, kiddo? Hehe.

I was so happy that they were getting along great. But a little part of me was sad. Yes, silly, I know. I know it's so silly that I actually considered NOT including that in my blog. Buuuut I won't start lying now! I was a little bummed. How did she not notice I was gone AT ALL? How was she eating and sleeping just fine and happy as a clam? It was a tough pill to swallow for this overly involved momma. Then I began to worry. Would she be different when I got back? Would she not take my breast when I got back and instead want to stick with the bottle?! I was nervous for when I got back.

When I arrived at the Phoenix airport, to Ronnie and Mckenna waiting for me, I gave Ronnie a hug, and bolted to the backseat, where Mckenna was balling (it was past her bedtime and she was NOT happy about being in the car instead of her crib). It wasn't exactly the welcome home I envisioned. She continued to ball. I got no big smile. Nothing. However, as she sat balling, I put my face next to hers, and she reached up, held my face, and got quiet. She still cried off and on (she was reallllly worked up!) but she held my face and nestled close the whole drive home as she dozed off to dreamland. When we got home, I took her to her room, she snuggled close to eat and then I tucked her in bed. I was feeling ok about the homecoming. She seemed to still love me, ate, luckily from the boob, but I wasn't so sure she really cared or noticed I was gone (tear!). Then, the next morning, when I went to get her out of her bed, she showed me she knew. She was happy, happy, happy when I walked into her room and then when I picked her up she planted a HUGE, wet kiss on my cheek. She never gives kisses! But that was a KISS! Ahhh, she needed and missed her momma. She confirmed that for me with one single kiss. I ate it up!

I don't plan on leaving her any time soon, but I am thrilled we both made it through. Next time I won't be so worried about how she'll do, how I'll do, and how it will be when I get home. Man, we're both growing up right before your very eyes ;-)

Sounds like Dad to me!!!!

Thankful Thursday: Single Daddyhood

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

Mandi's List:

Mandi is out of town at the moment, but I'm sure she's at least just a little bit thankful to get a break from full-time mommy duty :)

Ronnie's List:

I'm thankful for my wife and my baby's momma, and yes, they are the same lady :) This week, Mandi headed out of town for work which left me all alone with Mckenna. I'm on full-time "single daddy" duty for 60 hours, but who's counting? Both of us didn't quite know how this stretch would go since Mckenna is exclusively breast-fed with the ever so occasional bottle when the time calls for it. She is also almost exclusively tended to by her momma at night. Since she feeds twice in the night still, and because she prefers the boob, Mandi is the one that has to interrupt her sleep each and every night to feed out daughter. I have 60 hours of this. She's had 6 months of this. I can't believe how fortunate I am to not only be married to my best friend, and I mean that sincerely, but to be married to such a good and natural momma. She is so caring; she works so hard; She does it all with a smile on her face and with very few complaints. When I say that God created her with me in mind, that may just be the understatement of the year.

I'm thankful that the first 24 hours have gone off without a hitch. Mckenna has eaten extremely well. She's slept like a champ. And she's been overall happy for the first 1/3 of our journey together. We really are so blessed to have such an easy going baby. She's very willing to entertain herself for a while and when it's needed by her daddy, she's very willing to snuggle up in my arms. That's the best of both worlds if you ask me!!

I'm thankful I'm not actually a single parent. Parenting is such a team sport and I'm thankful that I'm not the only one on my team. I could not imagine doing what I've done for the past 24 hours repeatedly (for the most part) for the next 18 days, much less 18 years! I know roles and duties can shift slightly, but to be the sole provider for someone must not only being stressful, but extremely tiring. And I don't know about you guys, but entertaining a baby all day by myself actually gets a bit boring :)

So, what are you thankful for today?

Eternal Perspective

Here was the challenge laid down for today's blog:

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.

For the book, I chose the Bible and I landed on Romans 8:18 which says:


"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us"


This verse speaks of eternal perspective to me. Now, I wouldn't describe much of anything I go through on this earth to be suffering, but I know what the author is getting at. Sin causes suffering of all shade, types, sizes and styles. Without sin in the world, I wouldn't feel pain - both physical and emotion - I wouldn't hear or partake in gossip, I'd feel no envy, I wouldn't speak an ill word of anyone, my thoughts would be pure and my actions would be edifying to myself, my God and those around me. Man, that sounds like a great place! Where do I sign-up??


The answer is, that place exists and I signed-up when I gave my life over to Christ. To me, the verse I pointed to above makes it clear that instead of focusing on the toils and troubles of this earth and this life, I should be focusing on the place that I will be spending all of eternity when this pencil dot on the continuum of time, that some people call life, ceases to exist. I actually take great comfort in that.


People ask me all of the time if I'm really this easy going and happy about my current health situation. Some people just can't wrap their heads around the fact that I would call CF a blessing. And yes, there are those that actually get angry that I don't seem to be suffering. I can tell you this - I have never and will never consider anything that happens to my earthly body as a suffering. This is just way to temporary for me to ever consider it that. 


Suffering to me would be spending eternity separated from God. I can't even fathom that. I often sit back and think about this life compared to eternity and it continues to blow my mind. I think if we get caught up in the short-term, and what happens in this life, we'll always have some level of disappointment. I don't think I've ever met someone who was 100% satisfied with how their life is, was and where it's heading.


The only way to be 100% satisfied with this life is to focus on the eternal perspective. The only way not to get overwhelmed with our circumstance is to know that ultimately, the suffering we feel here on earth will be like a gun shot amongst a Fourth of July fireworks show that lasts forever.


I take comfort in the fact that the story has already been written. I'm simply acting out a short scene before the director calls me Backstage.

Learned the Hard Way.

There are many things that I have learned the hard way in this life, as I rarely do it the smart or easy way, but for the purpose of this blog, I'll just focus on one.

Many of you know my story so you probably already know where I'm going with this...

What did I learn the hard way?

I learned that if you don't adjust in this CF life; you can die.

Growing up, I was always active and involved in sports. I was also raised by a helicopter mom who was always hovering around making sure I was doing things the right way. This included my treatments. I kid you not, in the 20 years I lived in my mom's house, I did 2 treatment sets a day about 99.5% of the time. With her around, I had no choice. She made it very clear that it was her way or no way. To live in her house, I had to live by her rules and one of the rules was that treatments come before leaving the house in the morning and before going out or going to bed at night. If I wanted her support in any other activity within my life, I had to place my treatments on the non-negotiable list.

It actually worked out pretty well since I knew my mom was the queen of follow-through and if she said it, it for darn sure was going to happen. In fact, it only took me challenging her once, and subsequently being held from football practice, to know that she was serious.

My mom's methods worked wonderfully for the first 20 years of my life. The next 8? Eh, not so much.

What changed though?

I moved out.

When I became solely responsible for my own health and my own treatment regiment, I really screwed up. It's not that I totally abandoned treatments; it wasn't that at all in fact. It was that I failed to adjust.

What exactly do I mean by that?

Well, for starters, I certainly wasn't as active after graduating from high school as I was when in high school and involved in organized sports year round. I also didn't have a set schedule like I did in high school. In college I could pick my classes and I could pick which days and which hours those classes would be held. Needless to say, I rarely had a morning class. With no morning classes, I often had late nights. With late nights, there wasn't always night treatments because I was "too tired" from a night of hanging out aka partying. Sure, I got my morning treatment in almost every single morning, but my night treatment? I was probably batting about .500 on that one. Not good.

This wouldn't have been such a big deal however if I was still as active as I had been. There's nothing real special about the airway clearance we do whether it be hand CPT, vest, pep or otherwise. The whole point is to knock mucus off the walls of our airways and to clear it from our lungs. Sports did that for me for the first 18 years of my life in addition to treatments.

But now, not only am I on my own with my own schedule and my own choices, but I'm not getting those extra treatments on a daily basis that I was getting through sports. Not only that, but now I'm getting up to one less treatment a day because I'm "too busy living life".

If only I would have adjusted. If only I knew then what I know now.

Being active on a daily basis was keeping me alive.

Making my own stupid choices and not being willing to adjust was slowly killing me.

When something was taken away or no longer available that was keeping me so healthy, I needed to be willing to adjust and add additional treatments via the traditional way or through another activity.

But I didn't.

I didn't adjust.

After 52 days in the hospital, I learned the hard way that I should have.

Outrun CF - May 12th

Welp, it's that time of year again...on May 12, 2012 it's time to Outrun CF. As you've maybe seen us post in the past, CysticLife teams up with The Rock CF Foundation a couple times a year to "outrun CF" through a virtual race.

Here's how it works, anyone, anywhere can register for the virtual race. You can run or walk (shoot, you can even crawl or skip or hop if you want) any distance, near where you live (or wherever you'll be on race day).

All registrants receive a t-shirt that is specific to this particular race (each run we have we have a unique shirt designed for). This go around we had a t-shirt design contest, so the shirt is an awesome shirt someone in the community designed (see picture).

Then on May 12th, everyone outruns (or outwalks) CF on the same day, in their shirts. We encourage people to take pictures and post them on our Facebook page!

So the question is, have you registered yet? Don't miss your chance to join us in outrunning CF. Plus, we always have people bummed that they didn't get a shirt when they had the chance...so be sure to register so you don't miss your chance to get an awesome tshirt - they're only available by registering!

REGISTER HERE: http://www.active.com/running/you-name-it-az/out-run-cf-virtual-run-spring-2012