"I Lived" Because of Christine

I was very impressed (that would be an understatement) when I saw the new One Republic music video "I Lived" for the first time. It may be the best awareness video that has ever been put out in the cystic fibrosis community. It is rare to find an awareness piece that does such a great job in striking the perfect balance between education and inspiration. 

"I Lived" by One Republic

The music video below features real-life CFer Bryan Warnecke talking about what CF is, how it's treated, what his expectations are, his fears, his blessings and everything in between. What I took note of however, which may ultimately be most important for CF patients and their families, may not be what others noticed. Before I get into that, please watch the video below:  

Be Who You Want To See

So what struck me most about that video? His parents. I wish I could give them a hug and a high-five and say "job well done". They put their son in the best position to live out the title of the song. That video was much more about life than it was about CF. And when our parents allow us to live, in spite of CF, we can often look back and credit their approach for our successes as CFers.

Did you see how they raised Bryan? And in return, Bryan's attitude toward a life with CF?

"It's just one of those things that really makes you appreciate life. Makes you appreciate where you are as a person." - BW

That would not be his attitude if he was raised to fear a life with CF. If he was made to think that life gave him the short-end of the stick.

I do not know them personally, but I guarantee they modeled that mentality through action and words.

Judging by the clips, the last thing on their mind was that CF was a life-altering or life-shortening disease. Judging by those clips, they parented their son Bryan, and not the disease cystic fibrosis.

A Life In Spite of CF

So what did living life in spite of CF look like to them?

• Falling into a pit of foam, in a public play place (eeeeeeek!!!) at 1:17
• Riding a bike and falling over without a parents fear that their son is somehow "more fragile" at 1:47
• Riding in a tractor down a dusty road (oh no!!!!!!) at 1:56
• Water skiing in a lake (please make it stop!!!!) at 2:07 and 2:11 (with mom cheering in the background)
• Tumbling over in an electric ATV then being "put back on the saddle" and encouraged to try again at 2:19
• Boogie boarding in the ocean at 2:26
• Jumping head first into a pool, maybe public (ahhhhhh!!!), at 2:35
• Snow skiing at a presumably high altitude at 2:58
• Back to the dusty tractor ride at 3:00
• Playing hockey, which I assume means he's in a public locker room with his team at some point (I can't take it anymore!!!), at 3:24 

A Life Ruled by CF

Now, I didn't randomly pick those scenes out of thin air. I picked them because they are all things my mom would have prevented me from doing 34 years ago. When I was diagnosed with CF, my mom forgot that she had a son and instead only remembered that I had a disease.

Does that make her a bad mother? Absolutely not! She did the only thing she instinctually knew how to do as a mom - protect me. Her protection came in the form of shielding me from the outside world in fear that I would become "more sick".

If she would have continued parenting me like that, there is no doubt that I'd be dead.

My Life Changed

By the grace of God, at the age of 5 or so, my very imperfect mom with the very imperfect kid made the most perfect decision, to let me live. In fact, it was this quote by my doctor that started it all...

"If you continue doing what you are doing, not only will Ronnie be somewhat physically disabled his entire life, but he'll become mentally disabled as well...and that's far worse"

That's when my life changed.

She no longer parented the disease, she just started to parent Ronnie, her rambunctious son.

Mind you, this was still tough sledding for my mom. Not allowing the disease to make every decision for her didn't feel natural. There were many times where her heart and her head didn't agree. She had to practice parenting me apart from the disease. It was a decision that she chose to make every single day. That doesn't mean it was easy.

The fear was still there. The agony still hovered over her at times. The doubt crept into her mind from time to time. You know what though? She never let me see that. She would cry herself to sleep almost every night, something I didn't know until about 6 years ago. I never saw that.

After she popped the bubble she formed around me, the only mom I remember was the mom that told me to live, and live well. The mom who sacrificed her afternoons and weekends by having me in sports year round. The mom who made my health our families number one priority, while still be a fantastic mother to my two younger brothers. The mom who would come home physically and mentally exhausted from work, yet made sure to hand pound my chest, back and sides for 45 minutes like she had done before leaving for work in the morning. The mom who took a job that she was overqualified for, and not all that interested in, because it had the best medical insurance in the state. The mom who made me believe that if I put my health first, I was capable of anything. The mom who talked about when I would go to college/get married/make her a grandma, and never "if". The mom who made cystic fibrosis feel like such a small part of our lives, even though most of her energy went to managing it. The mom who raised a boy who was proud of having CF, because she made it clear that she was proud of me - the boy with brown hair, buck teeth, a loud voice, fast feet, quick wit, and oh yeah, cystic fibrosis.

I'm asked all of the time, "where does your attitude come from?". That's easy. My mom.

My Mom, The Perfect Mirror

My mom made me into the man I am today by using CF, and it's inevitable challenges, as another tool in her tool belt. She had me convinced that CF helped mold me into the boy that was the "apple of her eye". She always talked about what a blessing CF was to our family. She was quick to point out the opportunities that came along because of cystic fibrosis. She often reminded me of all of the great people I met and friends I had that would have never been a part of my life without CF.

I loved my life with CF, because my mom loved our life with CF.

Frankly, if she would have shown me that she hated CF, I would have thought that she hated me, too. If she would of shouted "CF sucks", I would have heard "our life sucks".

I never once got that feeling from my mom. I haven't heard her speak a bad word about CF to this day.

She perfectly modeled everything she wanted to see in her son and for that I am forever grateful. Like Bryan's parents, she made sure that a life with CF was a life full of living.

The only reason I'm able to write this blog 34 years after I was diagnosed with cystic fibrosis - with her granddaughter tucked safely in bed and my wife nestled up on the couch -  is because I had a mom who believed, from the bottom of her heart, that I would.

"I Lived" because of Christine. I love you mom.

Running Rehab: An Unscientific Experiment

Guest post by Kay

After being diagnosed with CF at age 21...I had spent the better part of my life telling myself that I was an exception to the rule, that my case of CF was mild and falsely thought there were probably no others with the disease that were doing so well. Sure, I had my moments during exacerbations when I worried and wondered if I’d get to see my daughter grow up...but for the most part I did as I pleased and was hospitalized on average once a year. I’d been a runner since h.s. track and when my daughter was young I had a sign taped to my alarm clock that read “RUN OR DIE” so I’d get up and run before her Dad went to work. But over the years my FEV1 had inched down slowly and I’d left the world of the moderately affected and dipped under the 50% FEV1 level and into the world of the severely affected. Life got harder. It became difficult to jog. I’d get so winded after just a quarter mile jog that I took to doing a jog/ walk type of workout and even that was so hard I began to skip more and more days. My daughter had asked me to run a 5k at a 1/2 marathon she and her dad were doing and when I told her I couldn’t even run a mile she gave me a bit of a hard time saying “anyone can run a mile...you’re just using CF as an excuse”. Ugg. So a week later when my nurse coordinator forwarded a Jerry Cahill video where he was running with oxygen...I was all over it!

I contacted Jerry through Facebook and he told me about using a wrist oximeter and putting the “tank” into a camelback backpack for jogging. I asked my Doctor who always had a witty sense of humor if I used oxygen for exercise if I would become oxygen dependent...his reply “we are all oxygen dependent” haha. But “no, it won’t mean you’ll need to supplement O2 for everyday things”. It took a few weeks and a little experimenting, first with liquid oxygen (not good it can’t take the jarring of the jogging and all the O2 would expel after just a short distance). I exchanged 3 back packs until I got one that had more padding and was comfortable to carry the M6 tank. And then I got in a routine...quickly running 3 and 4 miles at a time. I decided to train for the first annual “Run to Breathe” that Jerry was organizing for BEF in Central Park and invited my daughter to join me. Jerry provided encouragement to the jogging posts I would make on Facebook and we joked about being the last ones on the 10k course. Raceday came and the adrenaline and crowds had me jogging at a pace much faster than home. Central Park is relatively flat in comparison to the Fox River Valley where I trained. I was pleased with the time and my daughter and I had a fabulous 4 day trip to NYC.

Back home from the trip and I wasn’t feeling particularly well. When I went to the clinic I had the worst PFT results of my 49 year old life with Cystic Fibrosis. FEV1 was 36%. It scared me. Badly. I had been getting to know other CFers through social media and a few were on the transplant list. One was at 30% FEV1 so a personal score of 36% was alarming. I did not understand it. I’d been running about 20 miles a week and instead of getting better I was getting worse. I’d lost a lot of weight which had never been a problem as I am pancreas sufficient. But with all that running I could not eat enough. I got a tune up and recovered to 42% where I stayed for a couple years.

Chicago winters can be rough and long. This one has been the worst in my memory with temps dipping down to -18 degrees F at times. I was sick in October, choosing to do a 21 day tune up, and then mid December a bug that was going around at work settled in which took me six weeks to get over with Cipro and Prednesone. January rolled around and I still wasn’t myself and I looked at the option of IVs again and turned around and literally ran in the other direction. I decided to hire a running coach and see if having someone with expertise in building a program could help motivate me. I’d been reading the journey about those pre and post transplant go through with a mandatory “rehab” period both before and after. So Coach GP and I embarked upon a Running Rehab program for these old CF lungs of mine. He said “I’m going to be in your pocket”. By that he meant he would hold me accountable for the workouts and text me and ask me what I’d done each day. Coach is in the NYC area and travels a lot, so I’ve never met him...but working virtually worked very well. We spent a couple weeks seeing what I could do and just getting used to the idea. It was all on the treadmill as cold air is not my friend. My knees hurt, I was tired...but determined. Then he gave me regimented workouts that included interval training and progressive runs. I chose to just “do as I was told”. It made things simpler to just be assigned a workout and do it and not have to make a daily decision on what to do and how far to go. Wimping out was not an option. I let him be the boss of my schedule. The schedule was tough as I work two jobs but I fit it in most days, sometimes getting to the gym at 8pm, sometimes awakening at 5am to fit it in. A month went by and my knees no longer hurt. One day I started running without hooking up to the O2 tank (just forgetfulness) and thought, wow, my O2 sat seems ok...lets see how far I can go without it. I made it a full mile before the O2 sats dropped below 90%. Psyched!!! I hooked up for the rest of the workout and considered that bit of un-supplemented running true progress! Days that followed when I tried it again did not fair so well only making it to 1/4 mile before I needed O2. Every day is different, I learned. Storm and weather shifts affected my lungs, stress at work affected my lungs, but I started to see that pushing myself to run on the worst of those days ALWAYS had me feeling better after the run.

Then, the day came around I’d been training for. The clinic appointment. The day before I’d come home from work to do treatments and had a terrible coughing fit that lasted 30 minutes. It wore me out and my lungs reacted by tightening up. I thought ugg, I’m going to do terrible on my PFTs tomorrow. The next day arrived and I jumped a train and headed down to the city for my appointment. My lungs felt really tight and my expectation was that I may need prednisone to open them up again and if my FEV1 was low...I might even have to do IVs. Ugg. But, my first blow into the tube....showed 52%. Wow. Even though I wasn’t feeling particularly well, my airways were far more functional than before the running rehab. I’m optimistic my score would have been higher if not for those storms rolling in and putting me in a funk.

So, “what have you learned...from the past month Miss K?”, Coach asked. “I have good days and bad days” I said. He said “you respond well to multi tier training on many levels but it has to be very carefully measured between both not overdoing it and undergoing it”. It had become apparent that just running long, slow runs and adding more and more miles as I had done previously was not the right approach. My current program has me running a mix of intervals and progressive runs Tu, Th, Sat.  On MWF & Su I am doing weights and some cross training. I plan on working out 7 days a week, knowing I may miss one as I listen to my body and may need to take a day of rest when muscles and resolve are fatigued. Running more and running longer didn’t seem to pay off the way varied running has and please note: it’s also way less boring :-)

I’d recommend if you’re having trouble kick starting yourself to find a coach to work with. Athlete training programs used for healthy folks can also do great things for those of us with CF. A coach that can understand that there are some limitations but also not be afraid to push may be just the thing to get you started in the right direction. Exercise IS medicine!

Can You Really Gain Back Lung Function?

Question from reader

Question: 

So I know I've read things in your blog and have heard stories of CFers who had lung functions in their 30s and somehow managed to get it all the way back up to the 50s, 60s or even 70s. I'm pretty sure I even saw that you yourself were down in the 30s at one point. Do you have any idea how people (or yourself) have gained so much lung function back? How many breathing treatments a day does it take? How many hours of exercise? How much of a miracle?

Last year I was training for a marathon with my lung function in the high 60s, doing great. In July, I ended up being rushed into emergency surgery for a bowel obstruction and twisted intestine and a month afterward my lung function plummeted to the 20s and 30s. A year later I still can't recover. My lung function is now 27% and I'm going next month to meet a transplant team. It's super disappointing to have your feet knocked out from under you like that and even more disappointing when I've quadrupled my breathing treatments, tried exercising my butt off, and prayed every night for a miracle to no avail. I know there's a point when you're lungs can't repair themselves, but I also just can't believe that could happen in ONE month after surgery. I'm just wondering if there is something else I could be doing that others have done.

Answer: 

Thank you for taking the time to send me an email. Hopefully I can help you in some way :)

Generally, the people I see bounce back from lower lung function are from 3 camps - 

1) Never took care of themselves, almost died and got scared into changing

2) Took okay care of themselves, got in a routine that didn't change much, slower decline and then finally realized that if they continued doing what they were doing they were going to die 

3) Took great care of themselves, hit a rough patch or a big event, sharp decline and then bounced back after changing a few things up.

There is of course other situations out there, but these are the three main ones that I see. There are also some who experience one or more of these situation during the course of their lifetime (If your curious, I was mainly #2). 

To answer your direct questions, it's generally increased breathing treatments and a regular, intense and consistent exercise regiment that gives people the best chance to bounce back. For me, it took 18 months of running 6 days a week and doing 4 treatment sets a day (4 to 6 hours devoted to CF care) for me to go from a 50% to a 75% (I went into the hospital in the 20's and after a week in ICU I blew a 31%). I've been able to maintain my 75% by doing 3 to 4 treatment sets a day and exercising 6 days a week for the last 3 years. I devote 1 to 2 hours a day to some type of exercise and/or physical activity.

It's funny that you mention the bowel obstruction as the catalyst for you to see a sharp decrease in lung function. One of my largest declines in lung function also came after a bowel obstruction and removal of part of my small intestine. I've been able to get most of that lung function back, but it's been over a decade (obviously a lot happened in the last ten years, and much of it was me not taking great care of myself, or as some people call it, college.)

With all of that said, here's my advice: Put yourself in the best position to succeed in and every day. Treat each day as a new day to be your absolute best and better than the person you were the day before. Don't get discouraged by the numbers. It's much more important how you feel. If you don't think you can push anymore, push harder. A lot of gain can be made during the time of resistance. Sleep is just as important as activity. This doesn't mean that you sleep the day away, but it does mean that you may not be able to have any late nights for a while. I always found that my best mucus clearing workouts came first thing in the morning as the sun was rising! If your aren't seeing the results you want, either by the way you feel or by the numbers, change up your routine (medications, exercises, treatments, breathing techniques, etc). And probably most importantly, never accept a place you don't want to be and never stop pushing until you hit your ceiling. How do you know you have hit your ceiling? You never will, so that means you're in this for the long haul. The only way I'll know that I maxed out is after I'm dead; know what I'm saying?

If you do what I outlined above, and you still don't see the results you'd like, that's okay! You'll still have your head held high because you know you gave it your best shot. Remember, failure only occurs when you don't try. If you try, no matter the result, you're a winner.   

Please let me know if you have anymore questions!!

.............

If you have any questions that you'd like to send my way, please email me at ronnie@cysticlife.org!

Are You Honest With How You Feel??

Question from reader

I love when I get questions from the community and I always hope that my answer can help more than just the person asking the question. We all seem to undergo similar experiences in this life and I figure it can never hurt to share my own personal life experiences. 

Question:

I am meeting lots of new people who don't know anything about CF, or what that means in my daily life. I am very comfortable talking about what CF is and how it effects me, but I don't know how honest to be, and how best to explain it to people who don't know me well. To look at me you would never know (unless you saw me sick) that there is something "wrong" with me, so I find when I try to explain it, it's almost as if people don't quite believe me, or think I'm being overly dramatic about the time I put into breathing treatments, or how sick I can get. I don't know how to explain to my jogging buddy that I ran 2 miles with at 6:00am (feeling junky but not too bad) that by 9:00pm that same day, I was coughing up blood and had a fever of 104. I don't know what to say to a new mommy friend that I canceled a playdate with on Monday because I wasn't feeling well, that by Wednesday I had a PICC in and am now doing a full course of IV antibiotics. She, being a kind person, texted today (Friday) to see if I'm feeling all better, and the truthful answer is no. No I don't feel better, I actually feel worse. I can barely carry my baby up the stairs because it's that hard to breath. I'm exhausted because I've spent 2 whole days in and out of the hospital and hours in waiting rooms. But saying things like that freaks people out, and then they don't know what to say. However, pretending things are fine when they aren't isn't exactly a good option either for any kind of lasting friendship.

So how do you handle it? Where is the sweet spot between complete honesty, and pat answers like, "I'm getting better!"?

Answer:

The answer to your question is a tough one (as if you didn't already know that).

For me, I've rarely been totally flat out about how I feel with my friends and family. If I were to say "not great" or "pretty bad" I would always follow it up with "but I'll be alright" or "I just have to keep pushing". I've never wanted to put an unneeded burden on someone who really can't do anything to make me feel better. Sure they care, but they can't actually heal my lungs, do my medication for me or take my place in the hospital. I'm the only one that can do those things, so I've always internalized a lot of those different "I feel like crap" feelings.

In times that I feel helpless, I don't want to cause those around me to feel helpless as well.

Even with my now wife, I was very honest about what CF was, how it affects my body and what it could all potentially look like in the future, but I always quickly followed that up by, "but I'll work hard to make sure I'm always living the dream!".

Think about this too, will anybody around you ever really "get it" no matter what you say or how you say it? Probably not. The only people that could get it are others with CF or maybe other chronic illnesses. For me, I'd rather others in my life see me for my perseverance, positive attitude and faith in Jesus - than for something they will never be able to truly grasp.

Response: 

Thanks so much for getting back to me so quickly! That does help, and I think you are absolutely right. Thank you for affirming that for me, and for the encouragement to be positive. I am generally a very positive person, but this go 'round has been a little rough. I know you are right and so I will keep on, keeping on!

If, as a reader, you ever have a question for me, please never hesitate to send it along. You can send it via CysticLife, Facebook or my email address (ronnie@cysticlife.org)!

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

Question from Reader: When Cystic Fibrosis Impacts Our Relationships

As you guys know, I love answering questions on topics I have experience in. I've been blessed to have had many great relationships in my life, and now, I'm able to call the most awesomest girl on the planet MY WIFE (still can't believe it)! We all know that cystic fibrosis can impact our relationships - both positively and negatively. This particular question comes from a fellow fibro who was recently heart broken when his girlfriend of 6 months decided that CF, and the possible implications and impacts of the disease, was more than she could handle.

Hello Ronnie,

I have cystic fibrosis as well. You have been a huge inspiration to me both physically regarding CF and spiritually. I apologize for not introducing myself sooner.

However, the reason I am messaging you is because I have a broken heart. My girlfriend of 6 months told me this evening that she could not see herself marrying me because if we had children (through assisted fertilization) I might die before they get a chance to grow up. We have had that discussion  before and she was devastated but I thought she had come to accept it. For the last month or so she has been saying that we need to break up and she would never give me a reason and her actions contradicted her words of "we need to break up" because everything she does indicates she still wants to be with me. Tonight she finally broke down and told me its because she doesn't want kids to grow up without a dad and also the fact that intro vitro fertilization (sorry if I misspelled anything, my knowledge on the matter is limited) is so expensive.

Is it wrong of me to expect her to be okay with the unsure future? I'm devastated.

I have come to you seeking advice because I know you have been through this, you have a beautiful daughter, and your life example (through my perspective on Facebook) leads me to believe that  you have the experience to help me.

Sorry to hear about this [name withheld]. I can only share with you my own experience and hopefully it can help a bit.

Very early on in our dating life, Mandi caught me off guard by saying, "I wouldn't marry you unless I was totally comfortable with being a young widow."

I was shocked that she would even think about this, but, that's because I don't have an "outsiders" perspective, and frankly, I'm a man. We men generally don't think for the future, we think for the present. Women on the other hand are wired a completely different way.

It takes a very special woman to commit their lives to a man with CF. Our life is simply different. There are sacrifices we have to make as a couple that no other couple has to worry about. And, there is the prospective of an untimely death that would leave them all by themselves for an undetermined amount of time.

So, to answer your question - Yes, it is wrong of you to expect her to be comfortable with being a young widow and/or a single mother. Most girls won't be comfortable with that. Is it a reality that it could happen? Sure. Are we planning on it? Absolutely not!!

Her worry about IVF being expensive is just noise and her grasping at straws. You can figure out the money part.

I'd be thankful that this is only coming down at 6 months into the relationship. I understand that the pain is real, the hurt is real and you're not feeling great, but it could have been much worse. Imagine if you were engaged when she realized this?

Sometimes, God places something on the heart of the girl who is wrong for us. The wrong girl needs to be out of the picture before the right girl can enter it.

One week before I met my future wife, my girlfriend and I of over 2 years broke-up. I wasn't happy about it at the time. But, looking back, I thank the Lord that He ended that relationship when He did.

Hope this helps and please let me know if you have any questions or comments.

The First Time Cystic Fibrosis Was Real to Me

**I recently stumbled upon this post written by Mandi way back in 2009. Gives some of you new readers a good glimpse into the beginning of our relationship and how awesome Mandi is for sticking around!!**

Ronnie's carefree attitude always makes Cystic Fibrosis feel so easy; so manageable. Sure he has his good days and bad days, but for the most part CF doesn't play much of a role in any given day. However, I have come to learn that the CF Ronnie portrays and the CF Ronnie has are two very different things.

After dating for about 6 months, Ronnie and I went to China together to visit my parents. In China, he experienced the perfect storm of a chest cold, polluted air, cigarette smoke galore, hemoptysis, and one long flight back to the US, but I didn't realized just how bad off he really was. I knew he didn't feel well on our flight home. In fact, I spent the entire 12 hour flight watching him as he fell in and out of sleep and consciousness. I'd watch his chest for movement and nudge him if it looked like he was "gasping" for air more than he normally does when he's asleep (anyone else breath like that? It almost sounds like a slow, drawn out bull frog croak). Still I wasn't nervous. He'd give me a reassuring smile here and there, crack a joke or two, and let me know he'd be fine.

We got him back into the country and into the emergency room. We sat there for hours. Ronnie's sats were low enough that the nurses seemed quite alarmed, so they put Ronnie on oxygen, and kept upping the number of liters, from 2 to 4 to 8. Ronnie didn't look like he felt the greatest, but still he gave me a reassuring smile, cracked a joke or two, and continued to tell me he was fine. Around 3 am, he told me to go get some sleep. "I'm just waiting for a room," he said. "Go sleep and I'll be all set in the morning when you get up." So I did.

When I got to the hospital the next morning around 7, I found him in ICU. He was sound asleep, hooked to all sorts of machines making all sorts of noises. The most alarming of all, however, was the bipap. I later found out that they were unable to keep his sats up with oxygen alone, so they had him on the bipap to attempt to get more oxygen into his body. I sat there just watching him. There was no smile for reassurance that I could see through the bipap mask, no jokes, no words of encouragement, or words at all. It was the first time I'd seen him truly sick. The first time he just didn't feel well enough to bring light to the situation. It was the first time I saw that CF could change the game within a split second. It made me realize how much I don't know about CF. It made me understand that it's a very, very serious illness.

That being said, it also made me realize how much of a fighter Ronnie is. Uncomfortable, in pain, uncertain: He just kept on. And as each day passed, he just kept fighting and kept improving. It wasn't long before his reassuring smile was back, his jokes started flowing, and his encouraging words soothed my worried mind. So I guess the best part about the first time CF was real to me, was that I realized no matter how much CF can do, Ronnie will always do more.

Two Important Lessons from My Mother

To say that my mom passed down many lessons to me that carried on throughout my life could be the understatement of the year. I could probably fill an entire book with all of the wisdom that she passed down to me over the years. Little anecdotes and advice that I've drawn from constantly to either get through a certain situation or just draw strength to continue motoring throughout the day. But as I've talked more more about my life with cystic fibrosis, I began to realize two very important lessons that shaped much of my life up until this point.

These two lessons play off each other in perfect harmony. They are:

1.  Not everything bad that happens in my life is a result of having cystic fibrosis.

2.  There are many good things in my life that I may have never experienced if I weren't diagnosed with cystic fibrosis.

Let's look at the first lesson. I don't think it's an overstretch to say we live in a “blame society”. We are always looking for someone else or something else to blame for our set of problems. Whether it's blaming the dog for eating our homework (even though we left it within his reach), blaming our boss for our cruddy job (even though we enter work each day with a chip on our shoulder) or blaming lack of time for not exercising (even though we still get in our 1 to 2 hours of TV a day). It's just so much easier to blame others or some external force for the bad things or bad situations that happen in our lives. It's much tougher to look within, or look into a mirror, and at least partially blame ourselves.

Cystic fibrosis can be the perfect scapegoat. I used to think that there was no way I could ever run any sort of distance because I had cystic fibrosis (even though I had never attempted to train). There are days that I thought I must feel sick because my CF was getting the best of me (even though there was a virus going around at school). I'm sure there were days that I used cystic fibrosis for being the reason that I acted out and didn't have respect for authority (getting to the root of that issue would take years). I'm not so sure I ever verbalized these, or even consciously thought of them, but I wouldn't be surprised if they were at least subconsciously there.

Maybe my mom recognized that. Maybe that's why I vividly remember my mom saying many times, “Cystic fibrosis won't always be the reason that bad things happen. Cystic fibrosis won't always be the reason that you don't get your way. In fact, rarely will cystic fibrosis be the reason. The reason? It's called life and we all are living in the same one."

I'm so thankful that I was able to carry that on to adulthood. There's no doubt that it played an active role in me pursuing to make a positive impact on this world. If I couldn't blame CF, then I was going to use it to motivate me to do good things.

The second lesson plays off this first one perfectly. When I look back I can identify so many things that have happened in my life that would not have happened if I'd never was diagnosed with cystic fibrosis. More importantly, there are tons of people who play a present and active role in my life who I may have not met if it weren't for CF.

My mom would always be quick to remind me when I was a child of this and now as an adult, I can see it clearly. This continues to play out today. I can't count the number of contacts, acquaintances, and friends I have as a result of being a part of the CF community. Diving in and serving the CF community is what I strive to do every single day. I can't imagine myself doing anything else. Would I be doing this without the diagnosis? No way.

The biggest role CF is played in my life is that of a sculptor. I'm convinced now more than ever that cystic fibrosis molded me into the man that I am today. The man that my wife fell in love with. The man that Mckenna calls "daddy". Many out there believe they'd be a different person if they weren't battling CF. I agree, I would be different, and I don't think I would like that different version of me as much. I know that others wouldn't.

And again, to quote my mom, “You can either use CF to hold you back, or to propel you forward.”

I choose the latter. What about you?

I'm Fighting For...

**Reposted from August 2010**

Quite often, I'm very fortunate to be asked questions by you guys that really make me think and evaluate where I stand on a particular subject. The following exchange that I had with a super awesome cyster and fellow CysticLife member was no different. We've had some tough goings lately in our little community and everyone has the right to, and does, react differently. Thank you for challenging me on this topic and really making me think about where I stand.

Message: Hi Ronnie, It's been a while since I have been keeping up with cystic life. Some of the reason is because I am busier now with Colton being out of school for summer and the other part of the reason is I get the blues. I am an optimist and a realist so I have great faith that I will live a long life, but also being a realist I will have moments of panic and fear at the thought that I know what this disease does to people and how fast something can go wrong. So I have a question for you I didn't want to post openly, do you hear everyone's story's, sad and inspiring and not get blue? How do I find a balance of being connected to the CF world without letting the sadness of some of it consume me? I put it like this to my grandma the other day, I can handle myself having CF it's my life I don't know any different, but what gets to me is that babies are still being born with CF and have to suffer and fight the battles we have been fighting our whole lives, that's what makes me sad, and I know a lot of CF'ers say the same thing about not knowing any different but as a mother seeing a child be affected by this disease is heartbreaking to me. It inspires me to do fundraising but it doesn't seem like enough. I sometimes feel we are being withheld from a cure because of the pure business of money making for drug company's. I'm sorry if I used this message to ramble or wasted your time, but I just wonder how you find the balance?

Response: So yes, I certainly read about and talk to many parents who have lost their children to CF and I myself have lost a handful of close friends. Whenever this happens I generally have the same reaction:

Compassion- I of course feel very sad for the family, but it is followed quickly by my next feeling;

Relief- I'm just so happy that the fibro or cyster no longer has to endure his or her pain and suffering;

Motivation- The fact that right now everyone born with CF dies with CF motivates me beyond no end to never stop fighting for awareness. At the very least, I want every person in this world to know what's killing my friends;

Self-reflection- I then think, am I doing everything possible to put myself in the best position to prolong and even possibly avoid the feeling of loss and despair for my family?;

I kind of look at our CF journey like this...we're all driving a car flying down the highway. Just the mere fact that we're driving in the car increases the chance that we'll get in an accident and die, having CF increases the chance that we'll get sick (have an accident) and see an earlier death than people not driving cars (non-CFers). Now, the question becomes, what do we do when we see a bad accident on the side of the highway? Do we completely stop our car and put ourselves in harms way? Do we see the accident and say a prayer for the people involved?

Do we slow down and hope nobody hits us from behind? Or do we see the accident, say a prayer for the people inside and then use it as a reminder that we better stay focused on the highway? We all know that if you focus on the accident for too long, you will definitely get in an accident yourself.

Now, you could say, "well what if I don't want to take my eye off the road and just drive (not be involved in the community)?" I would say that is a personal choice and one that many within our community make. For me though, it's a choice that I won't make. I like to see everybody else's car on the highway, how they drive, how they take care of their car, what color it is, who's inside, etc. I think we can really learn how to drive our car on the highway if we watch others around us drive theirs.

And yes, we're going to see some accidents, we're even going to see some accidents that result in death, but we're also going to see a lot of cool cars and meet a lot of great drivers. We're going to have the opportunity to meet some fellow drivers on the side of the road and let them ride in our car for a bit until they get a new one. Heck, we may even be driving a tow truck at the time and be able to carry them along for awhile.

As I look back at the highway I'm driving on, sure I see a lot of wrecked cars and tire tracks, but I see many more cars to the right, left, in front and behind me traveling just as fast or faster than I am. And if I see a wreck, I'm always willing to pull over and see what I can do to help, but I know that I'll have to get back into my car soon and drive.

Edit from Ronnie: Some of you may have just read that and thought to yourself "that sounded really insensitive". To be honest with you, when I read my words over again, if I were an "outsider", I would probably think that too. But for those of you who know even just a little about me, you know that I will do anything and everything for absolutely anyone in this community. My heart breaks every time we feel a loss, but it doesn't only break for the dead, it breaks for those of us still left here on earth. That's who I'm fighting for. I'm fighting for Josh. That's why I wake up everyday with a smile on my face and make sure that at least one more person in this world will hear the words Cystic Fibrosis. I'm fighting for Sara. That's why I thank God for her every morning. I'm fighting for Emily. That's why I will not stop until CF is a thing of the past. I'm fighting for Mandi. That's why I will never stop taking care of myself and loving those around me. I'm fighting for Kat. That's why I will do everything in my power to reach those in the CF community early enough to make a difference. I'm fighting for Jamie. That's why I try to answer as many questions as I can. I'm fighting for Kate. That's why I try to bring hope to the parent's of CFers. I'm fighting for Jesse. That's why I try to show the "normal" what our normal looks like. I'm fighting for us. That's why I was put here. That's why.

Here's Why I'm Open About CF

**Reposted from May 2012**

I recently posted a question about CFers and being secretive about their disease. I also asked why some consider their numbers (PFT's) to be a private matter. After reading through all of the responses, I figured I would post my thoughts on here concerning this subject. -Awareness is key. I don't shout from the mountain tops that I have CF, but I also don't hide it. The more people who know about CF and it's affects, the better. Imagine if everybody knew what CF was and that you can't catch it? Would children need to be so ashamed or get teased with comments like, "staying away so you can't get it"? Knowledge is power in every circle of life. The more people know, the less ignorant they become. For ME, and I stress ME, I dedicate my life to spreading awareness so that hopefully future generations won't ask the question, "What is CF?". It would make ALL of our lives easier.  

-If people "look down on you" for having CF, why in the world would you want them as friends anyway? It's not something that I state with my name when I meet somebody, but I certainly bring it up quickly if I see any type of relationship forming. Often, CFers with larger support systems seem to be healthier. An easy way to bring it up with friends (without actually bringing it up) is to set your digestive enzymes on the table before you and your friends dive into a meal. That will ALWAYS get the conversation going.  

-Generally speaking, we only hide "skeletons in our closet" if they are BAD things. CF may be a horrible disease, but it's not a character flaw. People will often react to CF by the way we present it. If I'm very secretive about it, then people will assume that it's some terrible thing that I don't want exposed about myself. CF plays a small role in who I am, but it certainly plays a role. For me, I think it has had a positive effect on who I am and many of my friends and family members have said the same thing. If you spin CF into a positive aspect of your life, friends tend to gain respect for your tenacity and perseverance in facing this disease. You don't become the "sick one" of the group, you become "the warrior".

-A common response I got was that people wanted to be seen for who they were and as an individual yet they didn't want to be seen as "different". To me, this seems like competing answers. Bottom line: I AM different. I have a different hair color than some of my friends, I weigh a different amount than most of my friends, I'm uglier than ALL of my friends, we all don't like the same movies, some of us are smarter than others in the group, and oh yeah, I have CF and they don't. CF does make me different AND it makes me an individual. Many of my friends come to me in hard times cause they've seen me navigate though these different challenges I've had in my life. I wear that as a badge of honor. I'm thankful that CF has molded me into a person that my friends would seek advice from. Would I be that way without CF? I can't say for sure, but I doubt it.

-When it comes to PFT's I think it's VERY important that we share those numbers with each other. If your PFT's are higher than mine, I want to know what you do differently than me. Maybe it's pure luck and you have a superior genetic code when compared to me, but what if it's not? Aren't we all willing to do ANYTHING to improve our quality of life? When I see someone my age that has higher PFT's, I admit, I get a little jealous. First I think, good for them, that's awesome (and I sincerely mean that), but then I think, "I wonder what their CF story is and what they do on a daily basis that is different from me?" I get it that some of us can do EVERYTHING right and still be very sick. Is there anybody out there though that would argue that TRYING to do everything right will MAKE you sick? Of course not. Each of us needs all the help/tips/tricks that we can get our hands on. Personally, I want every CFer to be healthier and happier than me and if I can provide them information on how to get the done, then that's exactly what I will do. We're all part of an exclusive club here that only has 70,000 members world wide. We all play for the same team. Doesn't it make sense that we all share our playbooks?

Stuck in a rut

I recently received an email by someone that I consider to be a friend in the CF community. We've worked together on a project that had us talking every week for about 3 months and I was fortunate enough to get to know her and her husband. I feel invested in her and was honored that she would reach out to me in this situation. Her writing is in blue with my response in italicized black. It's split up like a conversation so it's easier to follow:

I read your blog post today and I feel like it really spoke to me. Last month my doctors gave me a "new baseline" lung function of 59-60 FEV1 which was down from 80. I stayed pretty positive. After all, I felt fine and was able to run a bit. I sat down and made a plan for myself to keep working out to be able to run 3 miles.  Then life happened. I got called into the hospital to work 3 out of the last 4 of my weekends (she tried the 4th but it was my wedding anniversary).  The girl I job share with has 2 kids who have been getting sick and passing whatever it is around her household.  Although most weeks I still got 2 days off at some point, there were stretches where I worked 8 out of 9 days. I was/am exhausted and now, puny. I'm coughing all night. I get winded doing laundry...much less running.  

First things first, this IS NOT your new baseline. You will simply not allow it to be. You will make the adjustments necessary because the two most important people in your life is your husband and you (You're the most important by default since you are your husband's most precious treasure...at least that's what I tell myself regarding Mandi ;) ) Was the crazy work schedule happening before the "new baseline" or after? 

Life happens to all of us. There are seasons of no problems and seasons of nothing but problems. The trick is to maintain our level of commitment to our health, even at the expense of some things we love in life. When I get sick and life is crazy, I basically have "no life". I handle my "have-to-dos" (in your case work) and outside of that, it's all about my health. If I'm not working, I'm at the gym or doing a treatment. It's no fun, no fun at all. Frankly, it sucks. But, when I'm in the season I always think back on two things: How I felt/feel when my health wasn't my priority, and the about the promise I made to Mandi. I promised her she would never be alone. Ultimately, there is only One person who can keep all promises, but I'll make sure that I do everything on my end to make sure I stay true to my word.

I am so sorry that you are feeling the way that you do. I wish I could take it from you. I wish there was something I could do.

I guess I just don't know what to do. I got the "be proactive" lecture from my doctors and I've sent them an email asking what I should do.  I'm just frustrated because I feel like I can't win. Since my coworker has sick kids, I feel like saying "Sorry [name withheld] I can't trade you a day because I may get sick if I don't sit on my couch. You're going to have to tough it out." is so lame.  I'm not missing treatments, and I was exercising.  What more can I do?

Let me say what your excuse is actually, maybe not what she'll hear, but what's actually going on, "Sorry [name withheld], I can't trade you a day because I'm sick. I'm sick because my health is declining. My health is declining because I've been putting more into this job than into my health. I need to put myself first for at least a while and get back on track. You're going to have to make other arrangements.". That is NOT so lame. That's being selfless for your husband. I understand that she may have to find another job or spend (lose) money on different childcare, but frankly, it's either you or her. You'll be the one losing money (and other precious commodities) if your health continues to decline.

There are times in our lives when what we did before will not fit, or fix, the present situation. I lived for years doing the same amount of treatments and exercise all the while watching my lung function decline. I wasn't willing to adjust. I loved my job. I was good at it. I felt valued. I didn't want to give that up. The ICU and the threat of intubation quickly changed my frame of mind. Seeing a lung function in the 20's slapped me in the face. I new if I didn't change, I was going to die.

You're not there, but I don't want you coming even close to that.

My doctor suggested that I may want to try a less physical job...maybe at an outpatient clinic where the patients aren't as sick and don't typically have to be lifted or anything.  But there are no jobs around for that...especially not full time. We can't afford me not to be full time right now. 

I don't think the physicalness of the job is the bad thing (in fact, it could be good). But being exposed to sickness can drastically alter your course. I've never been as sick with non-CF sickness as I was for the past year. I have a little girl who loves to give kisses, and I don't turn them down. I catch what she has almost every time. It's been hard. I'm trying to make adjustments, like washing my hands more and less kisses, but it's real hard. However, I know she'd rather have a living daddy who doesn't kiss her as much than a dead one not kissing her at all.

As far as the job situation, all you can do is to keep your eye out. Also, I'd rather see YOU make the decision to switch jobs, go part time, change careers, etc. than you being forced to change because of a decline in health. 

I realize now that I'm reading this over again, I'm kind of dumping a lot out there. Sorry.  I just wanted to see if you had any ideas. 

Listen, I'm always here for you. Always. You're one of my faves and I actually hurt a little bit reading all of this. I wish I had the answer. All I can do is share with you what I've learned over the years with my (good and bad) choices and you have to take it from there. 

Please never, ever hesitate to reach out.

I'm glad to hear you're doing so well! Your baby girl is adorable by the way. I like seeing all her cute fb pictures. :)

Thank you. Mckenna is just very fortunate that she has a smoking hot mom who passed down half of the genes ;)

**Update: She has been focusing on nothing but work and treatments/exercise for the past couple of weeks and is starting to feel much better. Sometimes a "boring life" is just what we need for a while!!**

Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 

“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” - Abraham Lincoln

Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:

Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 

Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 

Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.

That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:

"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta

I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.