Thursday, June 2, 2011
Thankful Thursday - Movement & Happy Hour
Wednesday, June 1, 2011
Question from Reader: More Severe Genes?
Can I ask ? Is there certain Cf genes that are more sever than others or does it make any difference ? How old were u when ur parents told u that u had Cf I don't know when I should approach that with eoin he is 6. Also congrats on your 13 wk scan all looks great did u guys do ivf with pgd ?
You know they do classify genes into one of five classes. The classes are often just a representation of how well our cell is functioning. For instance, class 1 has little to no cell function where class 5 has very close to normal cell function. My mutation DDF508 (the most common mutation in the CF community) is considered a class 2. It's important to remember that despite our “class” of gene we have a lot of control in how CF is presented in our lives. I've met people with my mutation that were very sick early on and I've met people with my mutation that are in their 60s. So to make a long story short, it's not about what gene mutation we have, it's about what we do to take care of ourselves.
I don't know how old I was when my mom first discussed CF with me, but I know I was very young. She presented it like this: some people have brown hair, some people wear glasses, some people are in wheelchairs, some people can jump high, and some people have cystic fibrosis. She made it very clear that I was a normal kid who happened to have CF and I was treated as such.
Tuesday, May 31, 2011
My Belly's Shrinking?
We are 18 weeks today! So little peanut is about the length of a bell pepper. We haven’t posted belly shots in a while, so here they are. For some reason my belly actually looks like it’s shrinking in some of the photos, but I’ll just blame the photographer (cough, cough, RONNIE). I swear, it’s getting bigger and my jeans are finally getting pretty uncomfortable…but the rubber band trick is still working – except for the fact I have a major muffin top all the way around because they’re just simply too tight. The muffin top could also have something to do with the 9 pounds I've gained to date (no idea where my weight gain is supposed to be at this point, I'm just trying to hit my goal of keeping it to 10lbs at 20 weeks...we'll see). I think it’s getting to be time for some maternity pants, but I’m cheap, so I’m putting it off!

Monday, May 30, 2011
It's ALIVE...
A little update from Baby Land, just one day shy of 18 weeks. I finally have felt peanut MOVE! I've been pretty sure that I've felt little peanut move every once in a while for the last couple of weeks. But the last two days I'm even more sure that it's peanut. It is wayyyy too low to be my stomach growling and feels nothing like gas, so that leaves one option: baby! Any ladies out there that have been pregnant before or currently pregnant and want to tell me if I'm right? Here's what it feels like (my best description): put your hand on your cheek. Now quickly run your tongue along the inside of your cheek. It feels like what you feel on your hand (did that description make any sense?). Well regardless, that's what I've been feeling and I absolutely LOVE it. I don't get to feel it very often. It's generally only after I eat (normally lunch or dinner), when I'm relaxing/sitting on the couch, half laying, half sitting, face-up. And they come in waves of 2 or 3, but they always quit too soon.Saturday, May 28, 2011
CF in the News
FDA Approves Drug for C. Diff Symptoms:
Cystic fibrosis causing bacteria may harbour deadly MRSA super bug cure: http://www.dailyindia.com/show/442210.php
Cystic fibrosis bacteria could help fight back against antibiotic resistance: http://www.physorg.com/news/2011-05-cystic-fibrosis-bacteria-antibiotic-resistance.html
Mauli Ola Foundation Concludes Successful National Cystic Fibrosis Month with Three Events:
Adults with cystic fibrosis benefit from specialized St. Mary’s program: http://www.therecord.com/news/local/article/537629--adults-with-cystic-fibrosis-benefit-from-specialized-st-mary-s-program
Regenocyte Successfully Treats Cystic Fibrosis Using Patients’ Own Adult Stem Cells: http://gamutnews.com/20110525/9567/regenocyte-successfully-treats%C2%A0cystic-fibrosis-using-patients-own-adult-stem-cells.html
McMaster research helping battle cystic fibrosis: http://www.thespec.com/opinion/columns/article/537399--mcmaster-research-helping-battle-cystic-fibrosis
Genes Tied to Severity of Cystic Fibrosis Identified:
http://ow.ly/55kbR
Friday, May 27, 2011
So Why Don't You Exercise?
The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)
Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}
Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:
1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.
2) You NEED the benefits of working out more than most people
3) Most people CLAIM to not have the time to work out
4) Without a job, you have MORE time than most people to workout
Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.
So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First, commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.
Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.
Please keep me updated with your PROGRESS cause I KNOW it's coming.
Do Life,
Ronnie
Thursday, May 26, 2011
Thankful Thursday - Horrible Acne & American Idol
Wednesday, May 25, 2011
Respiratory Therapist - What I Expect
Today I had the opportunity to sit in on an advisory board meeting for the respiratory care practice of Carrington college. The basic goal of this meeting was to make sure that the students Carrington college was putting into the field were as prepared as they could possibly be to perform their job at a high level. There were representatives from the college as well as various hospitals and medical institutions around the Phoenix area. I was invited to sit in as a “public member” and speak to those in attendance about my involvement in the CF community. There wasn't much at this meeting I could actually contribute to other than that, but it was still interesting to be a part of the process.Tuesday, May 24, 2011
Anniversary Presents: Mission Accomplished


Monday, May 23, 2011
One Year Anniversary Recap



Sunday, May 22, 2011
One Year of Marriage - My Wedding Vows
To my beautiful wife - Happy anniversary! This year has definitely flown by, but I'm so glad that we were together for the flight. I love you so much and I can't wait to see what this "paper" day holds.
I hope the vows that I said to you on our wedding day are backed up by my actions every single hour that we share together...
My vow to you - May 22nd, 2010:
Mandi, I know that you have been dreaming of your wedding day since you were a little girl. And although I can’t claim that I ever dreamed about this day as a little boy, I now know that it was you I was dreaming of when I became a man. I could stand here and tell you all of the reasons that I love you, but we’d miss our honeymoon.
I just want you to know that you’re my inspiration. You have given me a zest for life that I’ve never felt before. Your smile, love, laughter, winks, hugs, kisses, drive, trust, spark, words, glances, encouragement and your support, fuel me each day and give me the energy to be who I am. Before you, I didn’t quite know what my purpose was. I now know that it was to be your best friend and your husband. No matter what lies ahead for us I will see it as a journey; one that can only be completed by the two of us together, with God by our side.
I promise to you today before God, our family and friends to love you unconditionally. I believe that God has been preparing us for this moment and for our future together since the day we were born. Before this world was even created, I believe that God chose you as a perfect compliment to me.
Through the good and bad, I want you to always know that I will be by your side. I promise that you will never again face life alone.
I promise to dance with you in the sunlight and prepare us for the storms. When the storms do come, I promise to hold you and to protect you. I promise to never keep tallies of wrongs, instead give you praise for all that you do which is right. I promise to never let the sun go down on our anger, and to treat each morning as a new day to love you. Our love may be like the ebb and tide of the ocean, but it will always flow.
In times of want, I will do all that I can to make our love rich. And in times of plenty, I will never let our love grow poor. In sickness, I will nurse you back to health. In health, I will do everything I can to watch you fulfill your dreams. In sadness, I will give you a shoulder to cry on. In happiness, I will be there to create memories with you.
When you need someone to encourage you, I want it to be me. When you need a helping hand, I want it to be mine. When you long for someone to smile at, look to me. When you want to tell a story, turn to me. When you feel weak, take my strength.
When my strength isn’t enough, I promise that I will call out to our Lord in Heaven. I promise to lead by example in our relationship with Christ and remain faithful to Him all of our days. I promise to lead us in a life of worship and to always put the Will of the Father before our own.
I will not forsake you or these vows that we have made, but rather strive to show you my love for the rest of our lives. This is my promise to you: From this moment, everything I am and everything I have is yours and for eternity my love for you will remain.
Saturday, May 21, 2011
CF in the News
1. FDA Clears Fast MRSA Test: http://ow.ly/4Qurl
2. From clinic to catwalk: Cystic Fibrosis patient becomes top model after talent scout spots her at hospital: http://ow.ly/4QuCi
3. The Faulks left the life they knew on a life-saving mission to help find a cure and control for cystic fibrosis: http://www.cff.org/aboutCFFoundation/Publications/connections/May2011/Above-and-Beyond.cfm
4. What's Bitter to Taste Might Ease Tight Airways http://www.medpagetoday.com/MeetingCoverage/ATS/26499
5. Synteract and Mpex Pharmaceuticals Team Up for Cystic Fibrosis Walk and Cure:
http://www.bioportfolio.com/news/article/685470/Synteract-And-Mpex-Pharmaceuticals-Team-Up-For-Cystic-Fibrosis-Walk-And-Cure.html
6. Triathlon on woman's bucket list:
http://ultimatemontrose.com/stories/245726-triathlon-on-woman-s-bucket-list
7. Babies' blood tests can end in false-positive screening scares: http://today.msnbc.msn.com/id/42829175
Friday, May 20, 2011
Gopher's and Cystic Fibrosis: Part II
Continued from Tuesday's blog...

Wednesday, May 18, 2011
Thankful Thursday - Peace Offerings & Funky Bugs
Ring Test - Baby Gender Predictor
**Edit - Apparently Mandi is supposed to be lying down for the ring test. Whoops :)**
Tuesday, May 17, 2011
Gophers and The CF Life: The Similarities Are Astounding
For the past couple of weeks I've been playing a cat and mouse game with a critter that is getting oh so close to my garden. Before I get too deep, let's start from the beginning, let's go back in time about 2 weeks...
Monday, May 16, 2011
Top Ten Reasons to Find Out The Sex
On Friday we posted our latest ultrasound video. Being 15 weeks, we thought we could possibly find out the sex, since with the right shot, you can take a really good guess at it. But as you saw in the video, our nurse went back and forth, initially thinking girl, then suspecting girl, and ending the appointment with her best guess, "boy...but we'll have to wait and see." Our IVF clinic is still giving us ultrasounds (just being nice) so we're going to sneak in one last one on Thursday before the baby doesn't fit on the screen, with the hope of finding out the sex.


