The Totality of Cystic Fibrosis

**Originally posted March of 2009

I've already talked about how CF affects my lungs...now on to the rest of the body.

Most CFers have a very hard time putting on and keeping on weight. I have been very blessed in the fact that I, for the most part, have not had that problem. In the CF community, I’m fat. My weight does fluctuate however. In the last year, I was 165 lbs at my lowest and 205 lbs at my highest. Gaining and losing this weight has its side affects and I have the stretch marks to prove it.

It is, however, a constant struggle between CF and food. I know I have to maintain a healthy weight, but there are times, many in fact, that food just doesn’t look very good. I eat. I get nauseated. I don’t eat. I’m hungry. I force myself to eat. I throw up. I manage to eat a good meal. I feel (and look) extremely bloated for the next 4 hours because of the malfunctioning digestion problem. So you see, when it comes to CF and my “diet”, they are in constant battle. Who knew eating could be so tough?

There are also other internal organs that are affected by this disease. Again, you can look up the specifics online, but just as a side note in which I know many can relate to: CFers have a high rate and are major “candidates” for diabetes. I have been very fortunate thus far, but have been told that it is not a matter of “if”, but a matter of “when”. At some point, I will be required to take insulin on a daily basis. So far, my sugars only seem to spike when I'm sick and in the hospital. I have taken insulin a handful of times, but I avoid it like the plague. I'm just a big believer in not letting your body think that it can give up and rely on medicine. CF can also affect the liver, kidneys, gall bladder, joints, and other organs and parts of the body.

The other consequence of CF, that is not a direct function of the disease, is the affect that the constant stream of medications and antibiotics that are constantly being poured into my body. I take some stuff that the medical community considers “heavy duty”. When I am hospitalized, the doctors keep a close watch on my kidney and liver function. Medicine is often a double-edged sword. It may be helping me in the short run, but hurting me in the long run. I’ll tell you what though; running a long distance always encompasses a series of short runs. I know that I need antibiotics to enjoy life right now, I'll worry about the future when I get there.

I also wanted to mention the other “side effect” that hits home concerning CF. I can’t father children. Over 95% of CF men can’t. My vas deferens (the tube for sperm) either didn’t develop or is clogged by that lovely mucus. Now, don’t let me mislead you, there are ways for me to “make” children. It won’t be the normal path that most men are able to take though. It will require doctors extracting sperm from me, since I can’t extract it myself. To me, this is a big deal. Being a father in the future is one of my dreams.

In short, it seems to some that CF “has no bounds”. In some ways they are very right, but in other ways they are very wrong. What I mean is I strongly feel that CF can't touch your mind or your soul. Have there been times that I feel a little overwhelmed and tired of fighting? Of course there have. But I would allow myself to "grieve" only for the moment and then I would figure out what I could do to change the situation. We can't always change how CF is going to affect our bodies, we can, however, control how we respond to this disease. My last hospital stay was 50 days long. I could have easily sat there and sulked my way through all 50 days. My PFT's weren't responding and at some points I was very frustrated and confused. But sitting there asking questions and wondering "why" definitely wasn't going to get my numbers up. I walked and ran outside every day. I ran stairs everyday. I worked hard and put in a ton of sweat equity. The kicker is that my numbers still barely budged. I was in a situation I've never been in before: lowest numbers going into the hospital, longest hospital stay on record by two weeks, and lowest numbers ever coming out of the hospital. It's on me now. How am I going to respond?

(There are other ways in which CF has affected the body which I am not writing down today because I can only comment on my experience. If you have CF and are reading this, please drop me a note and tell me some of the "side affects" that I have missed.)

How to Raise a Child with CF

The following issue is a very common one amongst the CF community. I just wanted to post the question and my response to see what you guys think. What would you have said?

Post:

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first. Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

My response:
I have no CF children. I however have CF and think that my mom did quite possibly the best job ever. So of course with my advice, you can take it or leave it...

I would never ever ever say "because of CF". If you think you have problems now, wait until she's interacting in the real world where nobody gives you special privileges "because of CF". My mom treated me no different than my brothers. CF wasn't a central focus in my house. Yeah, I was a sick kid at times and had to go in the hospital and do my treatments 3 times a day, ok, so what? I was still a kid. I still got disciplined the way my brothers got disciplined (except a lot more cause I was a brat).

She's not eating the ice cream "because she has CF". She's eating it because she's 3 and likes ice cream. Don't finish your plate, no ice cream. If you're concerned about your daughter getting enough calories, there are powders you can put in milk that will add nutrition and calories. High fat and high sugar foods aren't the only way to pack on the calories. You can do it many other ways without her even knowing.

How do you handle your other kids when they disobey? Do the same thing for her. We are who we are; CF doesn't make us who we are. If she's this way with CF, she'd be this way without.
Schedule treatment time for the same time every night, that way, the boys can pick the show before it, and then when it's treatment time it's her turn. Simply allowing her more options and priority "because of CF" is going to create a monster.

I also agree that taking away something important to a child is usually the best option for discipline. At least, I know that's what worked for me, and I was a crazy kid.

Bottom line: I would treat a CFer no differently than his/her brothers or sisters. Life isn't going to be fair her whole life and that's not changing. Life isn't fair for all non-CFers as well. A lot of it is her age, but I really think you need to nip it in the bud before her whole mentality is shaped into "I have CF, therefore, my way or the highway".

With all of that said...I have no kids and I talk a big game now, but who knows how I'll respond until I'm in the situation. Just know that I get that and I'm just trying to help.

Ronnie

Was I too harsh? What would your advice be?

A Young Girl's Cry for Help

I thought I would re-post this question and response because it applies to so many of us...

Young Girl's Post:
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.

My response:
I can't stress enough the importance to doing your treatments faithfully at your age. Believe me, we've all been there. I haven't met ONE CFer that is dying to do his or her treatments. I totally agree with previous posters that the future of CF is looking brighter by the day and although there may never be a cure, they WILL come up with a med that takes away many of the affects. The key is to keep your lungs healthy enough so when that day comes, you're lungs are somewhat normal. They've told me that I have a lot of scarring in different areas of my lung. That lung is gone and it's never coming back. Now my focus is to not let any more areas get scarred.

I agree with coming up with a routine. Maybe every morning you sit on your vest and do the nebs while doing something on the computer? Homework? Facebook? Myspace? Personal blog? Do you watch TV? Every time your show comes on, make it a habit to do your treatments while watching it.

I figure that anytime I sit down, I can be doing my treatments. Believe me, it wasn't this was when I was your age, but if I could turn back the clock and do it over again I would. I'm paying the price now, for my neglect in the past.

I really hope this helps and you can message me if you'd like to talk further.

Ronnie

Readers: What would your response have been?

The Top Ten Most Played List (iTunes)

I was actually a little nervous to see what my most played songs on my iTunes were and share them with you guys, but I promised myself (and you) that no matter what it was, I would be honest and list it. I highly suggest you look up these songs and see what you think. I may be biased, but I think I have pretty good taste when it comes to music :)

Just missed the cut: The Blower's Daughter by Damien Rice, Makin' Good Love by Avant, You Can Bring Me Flowers by Ray LaMontagne, Wild Horses (Live) by Alicia Keys & Adam Levin

10. The Freshmen (Acoustic) by The Verve Pipe (139 plays)

9. Drive by Bic Runga (140 plays)

8. Crash Into Me by Dave Matthews (144 plays)

7. Look What You've Done by JET (145 plays)

6. It's Your Love by Tim McGraw & Faith Hill (151 plays)

5. 3am (Acoustic) by Matchbox Twenty (158 plays)

4. Amie by Damien Rice (160 plays)

3. Boston by Augustana (176 plays)

2. I Love You by Sarah McLachlan (178 plays)

1. Fishing For by Delcoa (227 plays)

There you have it!! Now the question is, what is your Top Ten Most Played list???? And do you think this list says anything about me? :)

A Mother's Manual for Cystic Fibrosis

Before I was diagnosed, nobody knew what was going on. I didn’t show typical symptoms of CF. I had a rash from head to toe, was very cranky, and due to an inability to keep food down, dropped close to my birth weight. I went to different doctors, all of which had different opinions. One doctor blamed my “failure to thrive” on my mother’s breast milk, another thought it was allergies. At six months of age, after months of guess and check, I was taken to University Medical Center in Tucson, Arizona at the behest of my military doctors. There I was diagnosed with Cystic Fibrosis. Legend goes that I tested positive several times for the disease, but the doctors hesitated to believe the results due to my a-typical symptoms. My case was actually written up in a medical journal because of my unique manifestations of the illness at a very young age. And so the journey began.

Once I was diagnosed, my mother was frightened and confused. She had never heard of CF and with a life expectancy of 20, the outlook was grim. In 1980, the year of my birth, about 4% of people born with CF died in their first year. Being told that you will outlive your child is something that any parent would dread hearing. Doctors didn't stop there however. The list of "certainties" my mother was told only went on: “Your baby isn’t in perfect health”. “Don’t expect a normal life for your child”. “Your child isn’t like other children.” “There’s a good chance your son won’t live long enough to graduate from high school”. “Your son will have limitations on what he wants to do with his life”. “Consider yourself blessed if he sees his twenties”. I often think back to that time (by putting myself in my mother’s shoes) and feel extreme sadness for what my mom must have been going through. Here she was a 24-year-old woman, with a husband who was constantly away on military duty and obligations, with a sick child and information that didn’t paint a pretty picture.

Motherhood, for most, is a time filled with joy and excitement. But what about the few mothers who are faced with the unexpected? The potentially devastating? Some women were created to face these challenges, I'm lucky enough to call one of those women Mom.

I thank God everyday for my mom. My mom was the perfect woman to be put into this “dire” situation. There was no way in the world she was going to let me be a statistic. We were, together, going to face this disease head on. She has been the best teammate a (sick)boy could ask for. I had CF; CF wasn't going to have me. Our attitude, our efforts, and our determination would directly effect my quality of life. Want to know where my outlook on CF came from? Her name is Christine. She has never, ever, let me view CF as a crutch or curse. She never treated me differently because of CF. Is there a manual on how to raise a child with CF? No, but my mom sure should write one. She threw out all of the "certainties" doctors burdened her with, but allowed one piece of advice to mold her mindset. He said, “Listen, Ronnie has a physical disability, but you don’t have to make him mentally disabled as well.” With that, my mom decided to do what I feel she was born to do, just be a mother.

My Top Ten Favorite TV Shows

I must first mention that I don't think I really watch that much television. I may get in quite a few shows, but I have them all on DVR so I can skip over the commercials and save time. It's gotten so bad, that I actually refuse to watch TV live anymore. You can generally catch me watching one of the following shows during breakfast, lunch, dinner and from about 7:30pm to 9:30pm. Whoa, maybe I do watch a lot of tv? I'm starting to feel like a lazy sloth.

How many hours a day of television do you guys put in?

Honorable Mention: Any sporting event involving the University of Arizona, The Amazing Race, Survivor.

10. So You Think You Can Dance?- I can't claim to have watched every episode from all of the seasons, but I do go on "watching streaks" with this show. If I can start watching it from the beginning of the season, I'll generally get hooked on one or two contestants and make sure to watch just to see how they'll do. I still think most dancers are a little strange (sorry dancers), but they sure are entertaining.

9. Hell's Kitchen- I could do without all of his (Chef Ramsey) cussing which fills most of the airtime of this show with the sound of "bleeps", but I must say, he can get the best out of his chefs. Something must be working so I doubt he'll stop his antics anytime soon. Plus, every time he calls a female contestant a cow or dumbo, I do chuckle a bit. Sorry.

8. The Biggest Loser- Definitely one of the most inspiring shows out there. The new season just began, so Mandi and I watched the premiere last night. It was a good thing Mandi drank plenty of water through out the day cause I'm pretty sure she cried it all out last night. There are quite a few contestants this season that will tug at your heart strings. Example: A woman who lost her husband and two young daughters (one under a year old) 2 and a half years ago in a car accident. She said everything that she knew she was (wife, mother) was stripped away in that moment and that death would actually be a "good option" for her at this point.

7. House Hunters- This show falls in line with our passion for open houses. Mandi and I love touring homes and this show allows you to do so at the comfort of your own couch. It's also cool to be able to compare home prices all over the nation as well as architecture. HH is a great show to watch during treatment time cause it requires no sound.

6. Judge Judy- Before meeting me, Mandi was a self-proclaimed hater of Judge Judy. I told her to give the old bird another chance and now Mandi can't get enough. If you're ever feeling a little down on yourself, I'm telling you, watch an episode. I don't know where they find some of these people, but they manage to bring in the dumbest, trashiest, clueless and most desperate people of all-time. If watching these people get berated by Judge Judy can't help you feel better, I'm not sure what can.

5. House- I've been told by a couple of doctors that this is their favorite medically related tv show because of it's accuracy and because of the lead doctor's antics. I'm sure many of them wish they were allowed to say to their patients what Dr. House says to his. It's also cool for me to watch because they often mention medicines I've taken or run the patients through tests that I've done. If you haven't seen House before, I strongly encourage you to check out the new season which starts this week!

4. Sports Center- Maybe some of you out there don't really consider Sports Center a television show, but I do and I can watch it all day long if I had to. What's weird, is I can watch the same sports highlights over and over again and not get sick of seeing them. I'm not saying that I'm a sportsaholic, but I'm also not denying it either.

3. 48 Hours Mystery, Dateline & 20/20- I grouped these together cause they're basically the same show, they just happen to have different hosts and be on a different network. If any one of these shows deals with a murder mystery of some sort, I'm glued to the screen. Here's how bad it's gotten: If I go to watch a DVRed episode of one of these shows and it turns out that it's a repeat, I feel like a piece of me dies. Ok, it's not that bad...or is it? I guess that's the mystery. (Man that was pathetic)

2. The Office- I've never been able to watch the same episode of a show over and over again like I can with The Office. I'll notice things said that I didn't before or see a character do something in the background that I missed the first time. I laugh almost the entire time while watching the show and I would HIGHLY encourage you to rent all of the past seasons and catch up on what's going on. You won't be disappointed.

1. American Idol- Here's one of my tv claims to fame: I've missed ONE episode of American Idol in ALL of the seasons it's been on. I seriously think that it's the best show ever and I wouldn't be mad if it survived another 50 years...as long as Simon continues to be a part of the show. Goodbye Paula, you will (not) be missed.

This is for all of you Kris Allen fans out there:

Let me point out that this list is of current shows and doesn't include some all time favorites like Seinfeld and King of Queens.

Any shows that I haven't listed that are "must see tv"?

Locks of Love Got All of My Hair!!!

So I decided about 18 months ago or so that I wanted to grow out my hair to donate it to Locks of Love. The last 18 months were a test of endurance, commitment, and self-control...just kidding, it really wasn't a big deal. Hair grows, you cut it and then it grows again!

This was the last time a pair of scissors touched my head. The date was June 30th, 2008.

View from the front.

View from the back.

They had to put all of my hair into little pony tails to make sure there was enough length.

This is when Mandi started to get nervous.

Then it was time to shave off the pony tails!

I wanted to leave a little so I could have a mullet. Mandi said that would be fine if I enjoyed the single life :)

We managed to keep a little bit of hair, but if you look closely, it looks like somebody hit a sand shot from the top of my head and left a divot.

And there it is! 12 inches of hair to Locks of Love!!!

Even though all of my hair was gone, it still felt like I had my strength. Take that Samson!

Running for My Life

**I recently submitted the following post to a contest being held by the company Nature Made. They were looking for stories about overcoming hardship, helping others, or making a difference in the world. I probably don't qualify, but I thought I'd give it a shot**

Two months ago I came to a fork in my life’s road. I had a choice to make: Continue on my current path, watch my lung function plummet, and die; or make a drastic change to take my life back.

Spending fifty days in the hospital can have many affects on a person. For me, it meant a total reevaluation of my life. I knew that I was going to have to make a change, and I knew that it would have to happen immediately.

I was born in 1980 with Cystic Fibrosis, a chronic illness that is the number one genetic killer of children today. When I was diagnosed at 6-months old, my mother was told my life expectancy was 19 years. This meant I shouldn’t plan on going to college, I shouldn’t expect to have a wife and kids, and I certainly shouldn’t count on living an “ordinary” life. She took that to only mean one thing: Raise me to live an “extraordinary” life.

I began living life at full capacity. I played sports in high school, obtained a college degree, and devoted much of my time to be a blessing to others. In a sense, I felt I needed to pack 90 years of living into 19. I figured the more life I could squeeze into the time I had, the better.
This meant pouring my time into activities that I found most rewarding. I began working with various non-profit organizations and trying to be a help to those in need. Over the course of a few years, I co-founded a non-profit clothing and jewelry line that donates its proceeds to various children’s charities; established a not-for-profit coffee shop at a local homeless shelter; and worked hard to raise money and spread awareness for the Cystic Fibrosis Foundation.

My life, however, was turned upside down at the start of 2009. I began coughing up blood; enough of it to send me straight to the Intensive Care Unit for a week, and hold me in the hospital for an additional 40 days. My doctors and nurses were dumb-founded with my drastic decline. My lung function was low enough to put me on the transplant list, and I was unable to get enough oxygen into my system without the aid of a machine. My doctors became visibly concerned after I had been in the hospital for nearly fifty days, and had not yet reached my typical lung function. The doctors said there was not much more they could do. I began to realize that I was at an impasse. As a 29-year-old CFer, 10 years past my expiration date, I needed to take my life into my own hands.

From the moment I exited the hospital doors, I was on a mission. I began a strict routine which consisted of revamping my diet, exercise and treatments. I started excising daily, both lifting weights and running. As for my treatments, I committed to being more faithful with doing them than ever, ensuring that I do four, thirty minute treatments a day. And my diet began consisting of six, smaller, more nutritious meals, and adding several supplements and multivitamins to my daily pill schedule. I wanted to put my body in the best position to succeed.

In the 7 weeks since my release, I have logged more than 150 miles on my legs and 60 hours in the gym. It has paid off. I recently had my lung function re-tested and my lungs are now at over 75% capacity. That’s an increase of over 40% in 2 months! I feel better than I have for a long time, and I’m finally getting my life back.

The most incredible part of my transformation, however, was the unexpected opportunity that stemmed from it. I started this journey to help myself. To help myself, so I could help others. What I didn’t foresee, however, was its immediate potential to help others. I began to blog about my journey on a Web site called runsickboyrun.com. And in 2 short months, I have attracted several other CFers and their families, who have commented that through my story, and watching my improvement, they have been motivated to take on my mission as well. They have committed to fighting their decline and prolonging their lives.

Cystic Fibrosis Doesn't Define Me

I’m a brother. I’m a friend. I’m a music-lover. I’m a son. I’m an entrepreneur. I’m a boyfriend. I’m a nephew. I’m a grandson. I’m a gym rat. I’m a Christian. I’m a CFer. CF is merely one facet of who I am; one piece of the Ronnie Sharpe puzzle. CF does not define me.

Too many people with CF let it consume them. They become labeled as a CFer and lose their identity to the disease. Due to the totality the disease’s effects on the body, it is easy for people to let it become the entirety of their being. A CFer is pegged as a sick, weak, dependent individual. A CF life was supposed to be short, depressing, and difficult. That was not who I wanted to be. That was not life I was going to live.

My mom molded my outlook from a young age through the way she defined me in her own mind. It was never, “This is my son Ronnie and he has Cystic Fibrosis”. It was, “This is my son Ronnie”. She left the rest up to me.

Throughout my childhood, it was her perspective and my conscious decision to “redefine” myself that aided me to become the robust individual I am today. I knew the way I would be defined by others, started with how I defined myself. It was a mental game, and I was ready to play.

I didn’t allow my mind to be plagued with thoughts about CF. Of course, CF crossed my mind when I was doing treatments or in the hospital, but I learned at a young age that sitting around, wallowing "in my own mucus" wasn’t beneficial and wouldn’t change my circumstances. With a non-CF focused mindset, my life became mine, not my diseases. A mind that was mine, full of thoughts about all that life is filled with, was a healthy mind. Switching my mindset enabled me to worry about relationships and activities that mattered. I worried about how I treated my family, or how I interacted with strangers. I focused on how I could be a better friend, or how I should treat my girlfriends. I preoccupied my mental space with aspects of life that mattered.

With a mind filled with an assortment of life’s realities, I was able to enjoy all that life had to offer. My life became filled with friends, family, sports, school, business, and faith; in addition to CF. I began to fit CF into my daily life, instead of scheduling my life around CF. I’d squeeze my treatments in between football practice and dinner with my friends. I’d go into the hospital when I had a break from school, and before a family vacation.

CF is only one part of my thoughts, my life, my being. I may have CF, but CF doesn't have me.

My Cystic Fibrosis "Circle of Life"

So what does my typical day look like? The best answer is: There is no typical day. Relying on typical is hard when battling this illness. The thing to keep in mind is that there are over 1200 mutations of the disease. That means there are over 1200 different ways in which CF can affect somebody. If you add-in other genetic traits as well as environments, you’re literally talking about millions of ways. So remember, this is MY average day. There are some CFers that have my battles times 100 and some CFers that have no complications besides the fact that they can’t father children. CF comes in all shapes and sizes, but here is what I would consider to be my “typical” day.

I never know how I’m going to feel in the morning. Often times, I cough all night long or make wheezing sounds (so I’m told). When this happens I never fall into a really deep sleep. Without the help of a sleeping med, I usually feel like I haven’t slept the night before. With a sleeping med, I have to devote a certain number of hours to sleep, or I feel groggy in the morning. Therefore, if I can’t take the med and devote those hours, I generally feel like I haven’t slept (or slept very little) that night. I then of course feel tired and sluggish throughout the day.

With that said, the first thing I do in the morning is either workout or my treatments. If I’m able to breathe without doing my treatments first, I like to open up my lungs prior to my treatments with exercise. After exercise, I do my treatments. Treatments include aerosolized medication, oral pills and manual airway clearance. The treatments can vary, but they always include, a medicine (aerosolized albuterol and atrovent) to open my airways and decrease inflammation, a medicine (aerosolized Pulmozyme) to thin out the mucus, and a device that I wear to shake my lungs and try to move the mucus around and out. There are times that I additionally do a medicine (aerosolized TOBI) that is an antibiotic to kill infection. I also take about 40 pills a day. Most of these pills are digestive enzymes (Ultrase MT 20) and the others are vitamins, antibiotics (Azithromycin), and an acid neutralizer (Protonix).

After my treatments I usually take a shower. I only mention this because often times while in the shower, I vomit. Depending how much coughing I did the night before, I will generally vomit out all of the mucus I coughed up during the night. I feel nauseated most mornings. If I ate late the night before, you guessed it, that comes up as well. Most CFers have a malfunctioning digestive system. This causes nausea, bloating, irregular stools, and an inability to get the proper nutrition out of the food we eat. You can’t tell by looking at me, but many CFers struggle to maintain a proper weight. I have been blessed to be able to call myself “obese”.

After the shower, it’s on to the activities of the day. For me, that includes blogging, volunteering, speaking engagements, and trying to be a blessing to others. There are times that I find it very hard to get out of the house and get going. CF forces me find a balance between taking care of myself and “living life”. There is no doubt, that if I did 10 treatments a day, I would be healthier. But what kind of life is that? Treatments require sitting down and being still. Would anybody choose to commit themselves to 8-10 hours of their day to treatments? Making yourself in some regards “a prisoner in your own home”. I know I wouldn’t. I do, however, try and commit myself to at least 3 treatments a day and usually 4. This is what my doctors recommend, so that is what I try to do. Do I always do three a day? Of course not. But writing for RunSickboyRun.com has also provided me less of an excuse not to do my treatments. I'm already sitting down typing; I might as well throw on my vest and stick a nebulizer in my mouth. As I get older, my maturity and my health tell me how important it is to be faithful with treatments.

I live my life to the fullest. When I’m not doing treatments, I try to be active. This affects my health in a positive way as well. The more I move, the more I cough. The more I cough, the more my mucus moves around. The more my mucus moves around, the more easily I can get it out of my lungs. The less that’s in my lungs, the less of a chance of inflammation and infection. Less inflammation and infection, the easier it is to breathe. The easier to breathe, the better I feel. Ah, the “CF Circle of Life”. It sounds easy doesn’t it? I wish it were that easy.

My CF "Circle of Life" also includes hospitalizations every 3-4 months. I am hospitalized 3-4 weeks at a time. I stay in the hospital about 80 days a year. That’s about 20% of my (and your) year. I don’t say this for pity. I never seek pity. I say this simply as a dose of my reality. I’ve never met someone who likes being in the hospital. I can’t say that I hate it because I know I need it. I want to continue to live an active life and sometimes that requires me to be "locked up in the joint". Every time I get out of the hospital I am at my peak in lung function (With the exception being my last stay, which I will get into at a later time). Over the course of the next three or four months my lung function makes a steady decline. It declines until I put a halt to it. The hospital is that halt.

See, I can’t live my life without taking good breaths. Sure, I can lie around and do activities that don’t require a whole lot of deep breathing. But that’s not what I was created to do. I was created to interact. I was created to bless others. I was created to stare CF in the face and tell him that today won’t be the day I am defeated. I make CF plan around my life, I don’t make plans around CF. For me, CF is a being that I am in constant competition with. I guarantee you this, I will win. I will beat CF. There is no doubt in my mind. The day I was born I signed a lease, provided by God, to live my life. At some point my lease will expire, but I guarantee I will go way over on the allotted miles.

A Message from Member at cysticfibrosis.com--Please Read

The following message is from a concerned member at www.cysticfibrosis.com. I withheld his/her name to protect their privacy.

Member's letter:

Hello Ron, I know you don't know me, but I feel compelled to ask you a few questions. First, I would like to welcome you to the site. You really didnt give anyone the opportunity to do that, as you have never introduced yourself to the community. All of a sudden you turned up and started blogging about your daily activities. I think you may be wondering why no one is commenting on your blogs. That is one reason--you never introduced yourself.

Also, we are a little leary of strangers, as we had a terrible incident in which an imposter nearly wrecked our community. I am not suggesting that you are an imposter, but just letting you know that people are a little shell-shocked because of that. We welcome strangers, but we would like you to introduce yourself, tell us a little about you.

Second, I would like to personally ask if you would limit your posting blogs somewhat...You put out at least two or three a day, and it pushes everyone else's blogs out of the line. (I really wish Jeanne would have a rule that we only post one blog a day, unless emergency) Lots of people don't go to the blog page, so when a blog is pushed off, it may not have been seen...And you have another blog, so why do you double post? I went there and it's the same thing. I think you would get more responses if you wrote something different here. There are lots of people here with two blog sites...I even even contemplating starting one of my own...I don't mean to offend you by this pm, but I hope you can understand that this is an established community, it has been here a long time, and you come here acting like we should know you. You post your running routine, like we should be interested, when we don't know you. When asked what your cf routine is, you don't answer. I hope that you don't think that I am being inconsiderate by mentioning these things to you. I have had several people asking about you and who you are, I just thought you may want to know. Again, I would like to welcome you, and I hope I haven't offended you.

Sincerely, Name Withheld

My response:

Name Withheld,
Thank you for your message. First, I post stuff on this blog so it is more accessible to CFers in this community. I don't want to come in here and just advertise my new blog. It is getting quite a few views per day, so I'm guessing that there are some people that care about my "running routine". As you know, that's not all I post, as I have had posts on how CF directly affects my life. I feel compelled to share my story and I have the time to write it down. I enjoy blogging and I know others can write more if they are compelled to do so.

I have gotten a lot of positive feedback from readers and some seem to be taking on my work out challenge in their own lives. Therefore, while I understand and appreciate your feedback, readers, and fellow CFers I have spoken to would like to hear what I'm doing, so I am going to continue to write as I am now.

I came here and started writing to hopefully inspire other CFers to get out there and get active and take their treatments more seriously. I'm not sure what exactly it is you would like to know about me, but I would love to share anything and everything with you and the community. I see that you do not have CF yourself, so with all due respect, it might just be a matter of you not fully understanding the struggle and my desire to share my fight with, and inspire, others.

I speak regularly for the CFF and I am an open book when it comes to my disease. I didn't introduce myself to this site because it's not about Ronnie Sharpe, it's about CF. Those who would like to get to know me better can feel free to ask me questions as I would love to answer them. Many have PMed me questions and I have always answered promptly with a response. So why don't we start with just us? What would you like to know Name Withheld?

I'm sorry if it seems that I just came barging in here. I didn't think there was an initiation period when it came to this site. I don't only post my blog, I also answer questions on the forums everyday. I'm here to try and help. I live a "very typical" CF life but I think my response is different than most. I feel blessed to have CF. If I was born again, I would not choose a different life. This offends some people and I'm sorry about that, but that's how I feel.

It's not that I haven't struggled. I've had to put my life on hold at times. I'm in the hospital 90 days a year. I've coughed up so much blood I almost went into shock. I've been clinically dead. I've been blue from head to toe because of a lack of oxygen. But, all of those situations only makes me a stronger guy who appreciates every single breath that I take.
So, just tell me what to do Name Withheld. What do I need to do to make you and the community more comfortable? I'm only here to be a blessing, not a burden.

Sincerely,
Ronnie

Apparently some have been taken aback by the passion to broadcast my struggles. Please let me know your thoughts, I would love to know if this is a majority feeling or one woman speaking on behalf of a non-existent group. Thank you.