Dear Parents...

I saw this blog over on CysticLife and wanted to share it with all of you...

I can not imagine what went through your minds and hearts when your child was diagnosed with CF. I have always felt i should help parents by giving them some tips. I am not a parent with a child who has CF but i am a wife of someones child who has CF.

From the second I met my husband i knew he was special. We were in highschool and every once in a while he would miss school because he was sick. I never knew the severety of CF because it didn't define him. He was very smart, determined, had a rock band, was drum line captain and worked. It wasn't until we got serious that his disease ever came up. His parents have always had high expectations of him and his abilities and never allowed him to be a victim.

I know as a parent you may feel helpless at times and that there is nothing you can do. The best thing you can do for your child is treat them the same way you would if they didn't have a disease. I can not thank his parents enough for raising him this way and helping me to pick up and follow their lead. The reality is it sucks at times and you can get sad or pissed at the world, but then get over it. It won't change anything. There are some things you can't control, but your attitude towards them is 100% in your control.

I want you all to know you have the opportunity to raise a child who can inspire many and experience a full life. My husband has gotten to go to college, get married, have a successful career and now we are attempting to have children. I understand not all kids are as fortunate as my husband has been, but give them the tools and strength to have a chance. I hope to one day have my own children and I will teach them how to live their life and never feel like a victim.

Have hope in your childs future. My husband is 28 and we will celebrate 5 years of no hospitilization in February. There is no cure but there are great doctors and treatments. Giving your children strength and determination to deal with the life they were given is the best thing you can do for them.

Thank you Cheryl for writing such a powerful blog. I thoroughly enjoyed reading it.

"I can never imagine myself running!"

Guest post by Erin Goodrich

"That is awesome, but I can never imagine myself running!" Those were the first thoughts that filled my mind when I cam across Ronnie's blog RSR last October when I was sitting in my hospital bed, PICC line in my arm, wondering how I got to the point where admission was becoming a yearly affair and the nurses actually now remembered who I was.

Let me back up a little. I was diagnosed with CF about 3 months old from failure to thrive. Throughout my whole childhood and teenage years I never felt any "true" affects from CF. Yes, I had doctors visits every 3 months, and yes every time I left the doctors I always seemed to be on some oral antibiotic for the next two weeks, and yes I took all the pills and did all the treatments that went along with this disease. However, I never really "felt" it. Then there I was, 22 years old, about one year exactly from the time I had transitioned from the pediatric to the adult clinic was my doctor saying "I think it's time you have your first hospital stay seeing your PFT's have dropped" Tears, anger, frustration, fear all came rushing on me. I thought at that moment my life was ending, silly as it sounds, I was scared to death, and what the hell was this so called PICC line they were going to put in me!?!

Fast forward 3 years, and 3 hospital admissions later. CF was affecting my everyday life, now having that cough that almost never goes away, with a lot more mucus than I was EVER used to (thank you pseudomonas) and that constant worry that I had, yet never really expressed to anyone. On the outside I was a positive girl, who was living her life to the fullest. On the inside I was a mess.

I started googling CF groups on the Internet during my hospital stay and I was surprised and comforted to come across multitudes of blogs with people who had CF just like me! I started reading Ronnie's blog with amazement, I even emailed him to get some tips! Once I got home from that hospital stay I hopped right on that treadmill!! Then, about 2 weeks later, I got preoccupied with many "other things" so I stopped for a little while; this cycle would continue for the next 8 months. Then May came, another admission (twice in one year, yikes!) During that time I went home on IV's and started walking on my treadmill the whole time. When the PICC came out and my PFT'S were up a little, I was ready to tackle this whole "exercising" thing head on! Also, during that time I started to share some of my fears and concerns to my boyfriend of 2 years and my closest friends, everyone was EXTREMELY supportive, which really helped.

Throughout the whole summer I walked with intervals of running, loosely following the couch to 5k program. I set a goal for myself that I would run the Troy Turkey Trot Thanksgiving morning. Once the fall came, I could still only run for 3 minutes at a time; gasping for air. I started to tell people I was thinking of running the Trot, but wasn't sure if I could do it. EVERYONE I told about this was extremely encouraging, all these people believed in me! My boyfriend and other friends signed up for the 5k and they were going to do it with me. Well there I was, out of EXCUSES, if others believed in me, I had to believe in myself. I had to do this, not only to prove to my friends and doctors that CF was not going to hold me back, but I owed it to myself to overcome the one thing that I thought I could never do, and that these past few years that were really hard for me were for a reason; a wake up call to put me on the proactive route with my CF rather than the reactive.

One month until the race I started to up my minutes of jogging, one night I ran 1.5 miles without stopping, when I got off the treadmill I was beaming with excitement (and dripping with salty sweat!) The next week I ran 2 miles without stopping, the week of the Turkey Trot I ran outside (in the cold weather) and ran 2.5 miles with only having to stop a couple of times. During this whole process my lungs were even feeling better and I could feel a difference! Then there I was, at the start line Thanksgiving morning, 29 degrees and cloudy skies with my friends surrounding me, good luck text's flooded my phone that morning. All I wanted to do was to FINISH, and be at least a little under 45 minutes. I was so nervous I wasn't going to be able to do the whole 5k. I took a deep breathe and thought to myself, think about what you can do, not what you can't do, and I CAN DO THIS.

Before I knew it I was off with the other 4,000 runners, my friend Samantha ran side by side with me the whole time. When we first started out the cold temperatures were killing my breathing, and I found it hard to settle into a slow pace that I could stay at. I looked around and everyone else seemed to be running with such ease. Meanwhile, I was praying that I could just make it to the first mile. We finally passed the first mile, and at that point you could see the leaders already coming back around. Once we made it to the turn around I could see that I was actually ahead of quite a few people! Up a ahead was the second mile marker, I could feel my body tiring, but I kept on only taking a break to walk up the steep hill. When we roundedthe corner towards the finish line I heard Sam say "Erin look at the clock we're going to be under 40 minutes!!!" At that point a small burst of energy kicked in and I raced towards the finish line, with people on either side cheering for me and all of the other runners.

I cannot put into words the feeling inside I had when I crossed that line. I even fought back a few tears, it was almost like a dream, I couldn't believe I DID IT!! No one could take this small victory away from me, not even CF. This was a new chapter in my life, this was a chapter where I started believing in myself a little more, working harder on my health by incorporating exercising into my life, and being more proactive. That way, the next time I'm sitting in that hospital bed, PICC in my arm I will know I am doing everything possible to keep myself healthy. I also know I have a very long road ahead of me, and even though they'll be some bumps on that road if I keep running full speed ahead I'll make it to the smooth ground again.
I also wanted to send a special thank you out to Ronnie, if it wasn't for you, I NEVER would have done this, thank you for inspiring and believing in me. I can't wait to see how far I can get these PFT's up! :)

Erin's Bio: I'm 26 years old and was born and raised in Pittsfield, Massachusetts. I went to college in Worcester, Ma and then moved over to New York. I currently live in Clifton Park, Ny and work as a dispatch operations manager for a phone company based in the Capital District. My interests and hobbies consists of traveling, going out to eat, reading, shopping, decorating, EXERCISING and spending time with friends. "We're not here for a long time, we're here for a good time" :)

Note from Ronnie: Thank you SO MUCH Erin for taking the time to write this inspiring guest blog. I've known you for quite some time now and I can't tell you how proud I am of what you've accomplished. What a shining example of saying "enough is enough" and stopping at NOTHING to achieve your goals. I'll always be here cheering you on and I can't wait to see what you "beat down" next :)

Thankful Thursday - Who's coming with us!?!?

Last week, Mandi had a great post about thankfulness that we really wanted to build off of and continue this week. We can't stress enough how important we feel it is in our own lives that we remember to slow down when things seem to be getting a "fast" and just think about the little things that we're thankful for. Many of you expressed a similar sentiment last week and sounded interested in joining us in highlighting stuff throughout the week that we're thankful for and sharing them on our respective blogs or through the comment section of this blog. I have a little "Linky Tools" at the end of this post in which you can link your thankfulness post up to (I hope it works). Feel free to spread this around to anyone you know that may like to participate.

We all have GREAT things going on in our lives and sometimes it's just a matter of sitting down and putting it to paper before we realize how good we really have it.

Mandi's List:

1. As some of you may have seen, we're doing a 12 Days of Christmas Campaign with CysticLife...where we're sending out daily emails featuring articles by some of the incredible members of the CF community. It has been my job to create the emails and send them. And let me tell you, I couldn't help but think how thankful I am for technology and MailChimp.com (and no, this is not a sponsored plug. I do in fact just think it's the coolest thing)!! It has been a breeze to put the emails together, update the mailing list, hit send, and that so cool to be able to track the number of opens, clicks, etc. Technology blows my mind sometimes!

2. Thankful for insurance. We have incredible insurance and are SO blessed to have the insurance that we have. And in assessing potential baby makin' cost (all of which are out of pocket because I think it's one of the only things our insurance doesn't pay) I couldn't help but think about how blessed we are to not have to worry about medical costs with all of Ronnie's meds, hospital stays, clinic visits, etc. Insurance can be a headache at times, but man oh man, what a blessing it is to have a $4000/month med become a $10 co pay!

3. I am so thankful for the fact that we got our patio furniture this week, and it's all in good shape, no issues, fit perfectly on the patio, and is as comfortable as Ronnie required furniture to be. We ordered our patio furniture 6 weeks ago (it was brutal waiting 6 weeks to get it, as I'm sure you can imagine), and got it on Monday. I was nervous to see it in person and in the space, because there were a lot of variables we weren't sure about (color of the iron, color of the cushions, size, etc). But it all turned out perfect, which leads me to:

4. I'm thankful for arizona weather. It's been in the 70s the last few days (gotta love Arizona - it's December and in the high 70s). We have been able to sit outside on our new patio furniture quite a bit. It's been incredible to enjoy some meals and just spend time together outside, and really enjoy our yard and the weather.

5. I'm thankful for 2 legs that work. As many of you know, I'm training for the Phoenix Half marathon in January, so I am now needing to get in some longer runs. I feel so blessed to be able to run. Don't get me wrong, I hate running and I'm not really built to run (my body naturally moves slow, I have short, stubby legs, and my knees and ankles generally like to act up), but I am thrilled that I have the ability to stand up on two legs and exercise - whether it's for a run, a walk, or just a quick bike ride.

6. I'm thankful for my hubby (was this on my list last week too? I'm feeling like this may be a trend). Yesterday I went with Ronnie to a respiratory college to listen to him speak about CF, and I sat there the whole time feeling so blessed to be his wife. There's something about watching Ronnie speak that takes him out of the context of "oh that's just my husband Ronnie" and helps put into perspective so many of the traits I take for granted or don't notice all the time - like his sense of humor, compassion, passion, and intelligence. These are all traits I know he possesses, but seeing them from a different lens always makes me feel so blessed to get to call him "mine". (I know I know, CHEESY)!

Ronnie's List:

1. We're so blessed to live in a neighborhood we love with neighbors who we like. Recently we've had a chance to talk with some of our neighbors for an extended period of time (not your standard hi and bye talk) and come to find out, they're really cool! They're both young families who have quite a bit going on, but both guys love to talk sports. Sold!

2. Speaking of neighbors, I'm thankful for the little "bromance" (as Mandi calls it) brewing with my next door neighbor Rob. We spent the whole weekend doing projects on each others' houses and were able to really bond over some DYI stuff around the house. He's quite the handyman and really took the time to teach as we went along.

3. I'm thankful for good groups at our church. We're part of a group called "After I do" that's made up of couples who have been married for less than 5 years. Tonight we went to a small group which spun off of that group and enjoyed ourselves very much.

4. I have such a helpful wife. She's willing to do whatever it takes to assist me in getting into the best position for better lung function. Whether it's cheer me on , hold me accountable, move around my treatments or pound my back; she'll do it and won't complain. She's actually convinced me that she'd like me to be around for a very long time :)

5. I got a really good deal at a yard sale last week. I paid 20 bucks for an electric scooter, and guess what, it actually works!! I'm going to have to replace the battery for optimal performance, but for 20 bucks, I'll take it.

So there you have it. We could both probably go on and on, but that ought to do it for tonight. I hope to see many blogs shared or comments posted telling us what your thankful for today or this past week. It seems the positivity breeds positivity, and in my opinion, you can never have too much of that!

Rondi's Recipes: Slow Cooker Beef Curry

In our quest to become better cooks and pushing ourselves to new levels in the kitchen, Mandi and I will attempt to do a food blog once a week with pictures and reviews included. We realize that we did miss last week, not because we didn't cook, but because we forgot to take pictures. We'll also be posting pictures of our hamburger cake shortly :)

So here it is, week 2:

Slow Cooker Beef Curry

The ingredients: Curry, Jalapeno, Ginger, Onion, Stewed Tomato, Garlic, Beef Broth, Stew Meat, Olive Oil, Salt and Pepper

Mandi chopping up the jalapeno and ginger root.

Browning the beef in olive oil.

Chopped onion goes in the bottom of the slow cooker.

Browned beef goes on top of the onion.

Check on Jezzabel to make sure she's comfortable on the burlap sacks used to cover plants, while laying 2 feet away from her bed.

Combine juice from browned beef, garlic, jalapeno and ginger.

Add in stewed tomatoes and curry powder.

Smell...

...and serve. Oh yeah, we served it on top of rice.

Prep Time: About 15 minutes (with two people)

Cook Time: 6-8 hours on low heat in slow cooker

What we liked:

I like that it was only about a 15 minute prep time.

It was relatively idiot proof - you can't really screw up browning meat and pouring ingredients into a slow cooker.

It's a great meal for when it's cold outside, the heat of the meal really warms you up, without being an overly heavy meal, like most winter meals

You can put it all together and let it sit all day. Great for dinners when you're busy right up until meal time.

I loved smelling the different spices while this meal was being prepped. I think I could walk around with a ginger root tied to my neck.

For me, it had the perfect "heat". I could feel that heat in my mouth, but it didn't make me sweat like spicy things often do.

Brown, chop, mix, dump, turn on slow cooker. Not even I could mess this up.

The meal felt really light to me and had a fresh taste all of the way through.

What we'd change:

I would add more of each of the key spices: more garlic, ginger, and curry. I would mind more jalapeno, but it still had a pretty good kick to it with just 1.

This isn't something you can change, but something that is a bit of a con. It takes 8 hours in the slow cooker, so it's a meal that you need to think about the day before.

I would increase the curry, ginger and garlic. It had some good flavors, but I wanted more.

I would think about adding some chopped potato.

I'd love to have some naan bread with this meal.

Here's our overall rating (with 1 being the worst meal we've ever had and 10 being the best):

Mandi's Rating: 8.5

Ronnie's Rating: 8

Again, if you guys have any suggestions on how this is laid out or what you guys would like to see answered/done differently, please let us know :)

I don't care if I live...

...but it's not all about me.

(I don't know where this post is coming from, but for some reason I felt pulled to write about this tonight.)

Let me just cut to the chase (fair warning, you may hear this very differently than I'd like you to hear this): I haven't cared whether I live or die for as long as I can remember.

What?!?!?! Let me clarify. I LOVE my life. Always have, always will. I love the family I was born into. I love my friends. I've loved every job I've ever had. I love living. I love breathing, walking, talking, running, skipping, hopping and just about anything else you can think of. It's not that I'm eager to leave this planet, but I've always been ready.

I've had a very good grasp on why I'm on this earth since I was a youngster and I understand that ultimately I'm not in control of when I check out. How many years I'm able to be in this earthly shell was decided LONG before I was born and there is absolutely nothing I can do about it. I was set here, in this time, in this life and in this place for a purpose and when that purpose is met, I'm out. Now, do I hope I'm here for a very long time? Of course I do! Like I'm said a million times, "if I die, Mandi will kill me!". I want to be a booty kicker for the next 100 years. I want to be able to be a great husband on May 22nd, 2060 when Mandi and I celebrate our 50th wedding anniversary and our kids are having kids. The fact that I'm 100% comfortable with leaving this earth has absolutely nothing to do with my motivation for being here.

Growing up, my mom even had a sense that I felt this way. She would always say, "Ronnie, I know that you don't care if you go, but remember that you'll be hurting a lot of people that you're leaving behind". Now, she knew that I had a vigor for life, but she knew that my eagerness to be with God was even greater. It's funny, as I write this, it almost sounds like my last farewell. It's not (I hope) :) Point is, a big reason I took care of myself growing up WAS because of the people around me. The last thing that I ever wanted to do was to crush my mom's heart by dying before she did. The first time I held my brother(s) in my arms, I knew that I wanted to be the best big brother ever. When I married Mandi, I not only made a commitment to love her unconditionally till death do us part, but I promised her that I would do EVERYTHING in my power to have that death part be a long, long time from now.

So what's the point of this blog? Honestly, I don't know. I was thinking about how much of a motivation Mandi is in my life and then all of the sudden I started thinking about this. I guess my point is this: If you're reading this and you're looking for some motivation to take better care of yourself, find someone you love and that loves you back. Ask them how they'd feel if you got sick and ultimately died. If their response doesn't motivate you to be more faithful with your treatments, get active and just simply "do what you need to do", then I don't know what will. You may not think you're worth it, but I guarantee there are ton of people out there who think that you are. Now all you have to do is find them, hug them and let them know that you're ready to kick some butt.

The Things I Love to Hate

I opened up a blank blog to write my Mandi Monday and found myself staring at the screen for awhile. I don't have much to share (other than a HUGE congrats to my sister-in-law's brother - my brother-in-law once removed? - he got married yesterday, Sunday, to a WONDERFUL girl. It was an awesome ceremony and a fun reception). But as I sat staring, wondering what to write about, Ronnie sat next to me doing two things that I love and hate all at the same time. With that, the writer's block was gone. "I know," I thought, "I'll write about the things that Ronnie does that I love and hate all at the same time." Figured you might like to learn some odd, adorable, annoying stuff that Ronnie does.

You know the kind of stuff I'm talking about. It's that stuff your spouse does that kind of gets under your skin at the time it's happening, but you actually find it really adorable and endearing when you think about it. Ronnie has a handful of habits that test my patience at times, but they make me smile when I think about them. Some of the things I knew before we were married, some things I found out after we tied the knot. But they're the kind of things that you pick up on when you know someone really well. They're things that aggravate me at times, but some of the things that I love most about him - because they are so unique to him. So here they are - what I love and hate that Ronnie does:

1. Ronnie will sniff, and then get caught in a spastic, uncontrollable sniffing frenzy. It's like he gets "stuck". He'll sniff, sniff, sniff, sniff, sniff, sniff, sniff, sniff, sniff without realizing it. It drives me nutso. I generally have to get him to snap out of it by saying, "do you need a tissue?" or "knock it off, you're sniffing"...because I don't think he even realizes it.
2. During University of Arizona games (doesn't matter what sport) he sits on the edge of the sectional, closest to the TV. Not comfortably and relaxed. He sits WAY on the edge, upright, generally fidgeting with his fingers or toes, COMPLETELY focused on the screen. Then if they win or there's a good play, he'll stand up and clap LOUDLY walking around the room. Not so much annoying, but it makes me tense to watch him watch a game!
3. Ronnie has a face twitch (which he claims he does when his eyes are dry). It's the craziest face twitch ever. It's like an incredibly intense blink, only it's a circular motion of his whole face. It's like his face does the wave. One side of his face scrunches and then the twitch hops to the other side, all in a quick second. I always know what he's mid face twitch because I can hear that "spitty" sound from his mouth, when his cheek moves away from his teeth. This, like his sniffing, can become compulsive, and he'll start doing it really frequently until I tell him he's twitching or simply mock him by doing it back at him...ahh a wife's love.
4. He INSISTS on making the bed in the morning. This is typically an awesome thing (because he usually just does it by himself before I can even help), but it turns into a not so great thing when we're running late, need to leave to get somewhere, but we have to first make the bed. Realistically, it's only a 1 minute job if we're both doing it...but 1 minute seems like a lot when you're late!
5. If we're watching TV and I make comments or share my analysis of the situation happening on screen and he wants to just focus on the show OR I'm stating the obvious he'll say, "RIGHHHHHHHT" but in a crazy voice that starts quiet, gets loud, and goes quiet again, that sounds more like, "wwwhhhhIIIIIIIIIIIIIIIIte." (capital "I" being the loud part)
6. He knows I scare easily, so he'll hide in random parts of the house when he knows I'm looking for him, so he can catch me off guard and startle me - it almost always works unless Jezzabel finds him first, ruining the surprise. (I sometimes try to get him back by hiding and jumping out at him...but somehow he ALWAYS knows I'm there).
7. Ronnie thinks it's funny to randomly honk the horn while driving. He probably wouldn't do it very often, but the first time he did it I got on his case, telling him, "it's illegal" (I did in fact google it...and I think it is actually illegal to honk for no reason, although no very easy to enforce). Needless to say, he probably only does it so often because he likes the exchange. HONK. "Ronnie, no. It's illegal." Recently, he started making up reasons to honk the horn, so my "it's illegal" would be unfounded. Now he'll randomly honk the horn and yell, "GET OUT OF THE ROAD" while "shooing" the imaginary people out of the road. And another car thing he likes to do (maybe could be #8 or tied into #6, but I'll just put it here) is that if he's driving and knows I'm zoned out, he'll tap the breaks and throw his arm across me as if we're about to get in an accident, just to make me panic.

Welp, that's all that comes to mind. Perhaps I'll have him post a list of the things I do that he loves to hate. I tell you what though, writing this list I had the biggest smile on my face...so I think that means I love these things about him far more than they drive me nutso at the time :) I'm not crazy in this right? You guys must also have things that you love to hate about people you love and care about. Leave comments of all the adorable, endearing, annoying things you favorite people do.

What's in a Google? HOW DO

Here's something I started a while ago on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: HOW DO

Top suggested searches:

how does facebook make money

how do you dougie

how do you tag someone in a facebook status

how do i find my ip address

how does fushigi work

how does criss angel levitate

how do i get a passport

how do i get rid of bed bugs

how do you multiply fractions

how do you know