The week that was...Day 1

Hello again folks, I guess I'm on a roll here blogging about life and everything.  This is the third one in about the past month, that seems to be a new record for me.  Well after a nice little two wheel therapy for a few hours today (i'm tellin' ya, you gotta try it), I find myself back at my favorite little caffeine shack with my laptop and a few thoughts rolling around in my head.  Probably a good time to update everyone on the events of the week, as it was an eventful week.  WARNING:  this blog entry may be a little more graphic that what you want, but hey, I'm not forcing you to read it.  If a juvenile and crude sense of humor offends you, well then...........ha, you just don't know what you are missing, after all everyone knows that C.F. really stands for coughs and farts.

So when I last left you, I was getting ready to head into three days of fright-fest.  I was really glad I wrote last week because it was good for me to let some of the anxiety out and put it down in front of me, as well as the rest of the cyber world.  After getting only a few hours sleep on Sunday night due to little CF Rider deciding she needed some orange juice as I was getting into a deep sleep at 2:15am, then proceeding to want to get in bed with us to doze back off.  Now this poses a particular problem because as wonderful as little CF Rider is, she sleeps like a spasmatic Mexican jumping bean who is being attacked by a wasp.  The Mrs. and I usually don't sleep too well with crane kicks to the head or punches to the kidney area, but we were able to put her back in her bed after a little while without sustaining any concussions or need for bandages.  I dozed back off for what seemed like 10 minutes and then the alarm started going off...at 5:00am.  Now those who know me well know that I am not much of a morning person, in fact if I ruled the world the day would start at noon, but alas I must abide by the schedule made for me by someone else and be at the hospital clinic at 7:00.  So hitting the snooze button on my phone a couple of times, I drudged out of bed and got ready.  Well as ready as I was gonna be for three days of poking, prodding, and probing.  Kind of hard to get yourself psyched up for that kind of thing.  Looking back, my alarm clock song probably should have been "Eye of the Tiger" or something from any other Rocky movie.

So I get to the hospital clinic a few minutes early and am amazed at the ease of getting a parking spot on one of the lower levels of the deck.  First stop, the lab for "a little bloodwork".  I put that in quotes because I found myself almost begging the lab tech to please leave a little for me after what seemed like 30 minutes with a needle in my arm and 20 gallons of blood taken.  Mind you, they want you to be what is called NPO before most of these tests, which means nothing to eat or drink after midnight the night before.  So now, I'm up early, no coffee, no Rice Crispy treats for breakfast, and now almost no blood.  I probably would have kicked a puppy for farting in my direction at this point (not really, I would never kick a puppy), but you can imagine I was not at my best.  The tech. then says I need to pee in a cup and my response (in my head) was...Really!?  You want me to pee in a cup only about an hour after my wake up pee and having not had anything to drink, surely you jest.  Well I managed to fill the cup, yep I'm the man, and then I come back out to find the lab. tech as she said not to leave quite yet.  I went back out and she shoved a huge tank in my face and said this is for your 24 hour urine collection.  Okay no problem, I've done this before.  Then she said wait while I collect some things for your stool collection.  Cool, I thought, I didn't realize that furniture was part of the pre-transplant evaluation and we could use a couple of good ones at the bar in our kitchen.  She came back with a couple of popscicle sticks and 3 little cards.  I said, you expect me to make something out of that to sit on, what am I McGyver or something.  She didn't find that too funny.  I did so I laughed a little and left the lab.  The game was on.  I found my humor button and figured I might as well make the most of my time at this place and maybe get a few yucks along the way.  Look out clinic, the short little tattooed motorcycle riding jokester was on the loose.  Who would be my next victim?

On to my next appointment which was in Radiology for a sinus x-ray.  No big news to report on this part as I'm pretty sure there wasn't a whole lot up there for them to see.  They should have gotten a pretty good picture of my sinuses, especially since I left my brain at home that day, as it would not be needed until Day 3 at the Neuropsych. evaluation.  Next stop was up at the Pulmonary department.  I'm pretty familiar with all the folks up there as this is where I go for my normal 3 month checkups.  This is where I was scheduled to have a TB skin test.  You know, the one where they blow up these little bubbles under your skin with tiny needles and then you hope and pray these little bubbles go away.  Well lucky me the nurse asked if I minded if a brand new nurse could perform the test.  Uhhh, okay, I mean how can you screw up a TB test.....right.  Luckily the only thing she messed up was going a little too deep on the first bubble and that drew a little blood.  Not so on the other two sites, although at this point that may be due to the laboratory not leaving any left.  

Next up were my PFTs (pulmonary function tests for you civilians and non-medical types) and something that I was a little unfamiliar with, an ABG.  The PFTs are tests that pretty much sum up how well you breathe.  I've been doing these for over 30 years now.  The technology has changed over time, but the tests are pretty much the same.  Well my PFTs were down right about 20%.  Yes, you read that right, 20% lung function.  That means you could cut out one and a half lungs of a normal person and you would still have more lung function than me.  Now, it's not really as simple as that sounds, but it's the best way I can describe it.  A lot of people say that having CF is like breathing through a straw.  I'm not all sure about that, all I know is that 20% kind of sucks, but somehow I make due with what I've got.  Most folks at this level would be on oxygen 24/7, but for some baffling reason I don't rely on oxygen at all.  Mind you, I'm not out running marathons with these airbags, but I get around okay.  Next came the ABG test and I was quickly reminded what this was.  For those of you lucky enough to have never had one of these, let me fill you in.  It is where the nurse takes her hand and places it on your wrist to feel for a pulse.  Once she has located it, she keeps her hand there for a moment to make sure you have a strong rhythm there, and then she takes a needle AND FREAKING JABS IT INTO YOUR WRIST AND DIGS AROUND UNTIL SHE GETS IN THE ARTERY.  Holy freaking hell does that hurt!!!  I said all sorts of words that would make a sailor embarrassed, at least in my head.  All I could do on the outside was take deep breaths and pray that I wouldn't strangle the nurse with the gauze wrap.  Did I mention that it hurts, badly.  Oh and did I mention that after about 3 minutes of moving the needle around inside my wrist that she was not able to penetrate the artery with the needle?  And did I mention that they had to do it again....in the other wrist?!  Luckily another nurse came in and took over doing the other wrist and she hit it right away and the blood was drawn.  One nurse said "thank you Jesus", the other said "praise God", I said "you're lucky to be given another day here on earth".  No, not really.  I simply said "Amen".  I left Pulmonary with 6 extra holes in my body, both wrists wrapped in gauze, 3 bubbles in my forearms and a wicked jones for some coffee.  Time to hit Starbucks before the next stop on the pain train.

So the next stop was at Nuclear Medicine.  I had no idea what to expect here, but with a name like Nuclear Medicine I knew it was serious.  Little did I know how serious it was.  Hehehe, time to break a little off the funny bone.

SO I get registered and sit down in the waiting area for, dun dun dun, NUCLEAR MEDICINE....okay that sounded much cooler in my head than it does on screen, but you add the sound effects on your own.  Before I can even get the phone out of my pocket to check out a little Facebooger, the girl tech. comes in and says Mr. Johnson.  I look around the waiting area, mind you there is no one else in there at the time, then I say well I guess that means me.  She just stares at me with a blank look on her face.  Uh-oh, this should be interesting.  I try to make a little small talk as we head back to the area where they will perform the test, partially because I'm a little nervous because I have no idea what this test is about and partially because it was just awkward silence after my little waiting room humor.  We get back to the testing area and there is two other folks waiting and I'm thinking wow this is some serious stuff if they need three people just to take me on.  I come to find out that two of them are relatively new to the arena and the other is the wily old veteran who is there to monitor the rookies.  Okay, now I get it.  The young girl tech. then asks me to sit down and proceeds to ask me  "Mr. Johnson, do you know why you're here?'  Ahh, she teed that one up just perfect.  I responded with a dead straight face and said, "yes, I am here as part of a top secret government mission to create the ultimate humanized weapon undetectable to foreign enemies."  That was it, I nailed it.  It was an Oscar worthy performance.  I almost wanted to stand up and give an acceptance speech.  Instead, I got a blank stare from the tech.  I think the veteran over in the corner gave a small chuckle, but that was all.  You remember the Charlie Brown Halloween special when they are all out trick or treating?  One character says, "I got a lollypop", another says "I got bubble gum", and Charlie Brown says "I got a rock", well that was me in Nuclear Medicine....I got a rock.  Anyway, on with the testing.  The young girl tech then lays me down on a table and asks me to raise my legs.   Hey, hey, get your head out of the gutter, this isn't no 50 Shades of Grey stuff here.  I lay down on the table and she injects something into my arm.  Turns out it's just some kind of minor radioactive chemical to give them a better look at the blood flow in my lungs.  After she withdraws the needle I then ask her how long until I start growing massive muscles and turn green....again nothing, no reaction.  I mean this girl had ice water in her veins.  The other young tech at least knew of my Incredible Hulk reference and then he started yammering on about Batman, yada yada, yada.  I was hellbent at this point on getting a laugh from young girl tech.  They did the procedure, I got off the table, and they told me I was free to go.  One last shot, and I took it.  As the girl walked me out of the testing area I asked her, "So how long does it normally take to eliminate the nuclear waste, I'm ready to drop this bomb?"  Stone-faced she kept on and told me to take a right after the double doors.  Man, that girl was cold.  I needed to go outside to thaw out from her chill.  Tough crowd those Nuclear Medicine folks.  Might be a while before I go back and work that room.

At this point I had a couple of hours to eat lunch before having our Transplant Education class.  Mrs CF Rider came up and met me for lunch and to hang out the rest of the afternoon.  We had some sushi from the hospital cafeteria, which is really good by the way, then got another cup of coffee before heading to class.  I told her of my morning jokes....she laughed.  That's all I really needed.  She took a picture before class started of her hand on top of mine on top of the transplant book.  She posted it on Facebooger with the caption "Together, we got this."

Yeah baby, you're right, we got this....together!

"Dream Big, Ride Free, Breathe Easy"

bkj

Stay tuned to this local blog channel for "The week that was...Day 2.

A few MINOR thoughts, before a MAJOR week.

In light of the events this week, and some others that I have been a part of recently, I've had a lot of thoughts rolling around in the ol' grey matter lately so I figured I might as well update this whole blog thing.  Besides, I promised I would try to do it more often whether it is being read or not.  Hey, baby steps right?  This one will be pretty long again, so i suggest if you want to read it all, get yourself a beverage, a comfy seat, and put on your thinking caps and follow along with me into the realm of Mr. CF Rider.  WARNING: there will be a lot of randomness and rabbit chasing going on here, but I will try to wrap it all up at the end in some nice special package that might make a little sense.

So a couple of weeks ago, Mrs CF Rider and little CF Rider were over in Georgia visiting GiGi CF Rider (that would be grandmother for those who don't know) and I was left all alone at the homestead.  Deciding it might be a good time to go up and visit with a great friend in TN, I sent him a text to see if he was going to be in town so I could come up and talk some CF Rider business.  Well, turns out he wasn't going to be at home, but would be over just outside of Nashville for a little Singer/Songwriter event that is being put on to raise money for what is called the Darryl Worley Foundation.  My friend invited me up to come and hang out and to catch the show and just to have a little bit of fun.  I immediately said sure thing count me in and I started the plan to get up to Murfreesboro.  Well the night before I started up with a cough and felt like it could be something coming on as Mrs. and Little were both having some kind of battles with allergies or sinuses or colds or something.  I went to bed thinking that riding to TN for one night and turning around and heading back the next morning probably wasn't the best thing for me, especially given the weather forecast, scattered and numerous thunderstorms all over.  I had all but made up my mind to back out of going, you know playing the safe and secure card and letting CF get in the way of me having a good time.  Funny, I woke up the next morning feeling great and with a new attitude.  Maybe my subconscious gave me a pep-talk in the middle of the night and reminded me that I have LIFE now and don't have to choose to sit around and feel sorry for myself and give in to the fact of having CF.  Maybe it was something else speaking to me entirely, but I was determined to hit the road and enjoy every minute of it.

I  packed up my road bag, strapped it on the bike o' life, and commenced to putting my knees in the breeze.  I had planned it out to stop at a couple of other Harley shops on the way to rest a bit because I knew it would be pretty hot on the road.  The sun was shining, the tunes were playing, and the bike was roaring.  Don't get much better than that.  I stopped at Rocket H-D in Huntsville first which was almost 100 miles.  Browsed around a bit, got a drink, and as I was leaving started chatting with a couple of the ladies in motorclothes.  I told them about CF Riders and what we are all about.  One of the ladies was an RN so she knew all about CF and really couldn't believe that I was 39 with CF and out and about on a Harley.  We chatted a bit more and then I hit the road again.  Not 5 minutes back on the road, mother nature hit on me.  I wish she would have bought me dinner first, but she jumped right on my bones.  Thunder, wind, rain, BAM, everything that makes someone driving a car look at a biker and say, "Man, I'd sure hate to be that guy right now".  I stopped under an overpass and put on the trusty rain gear and kept on down the road.  I passed a few folks who passed me at the overpass and sprayed water on me and thought to myself, "Man, I'd sure hate to be that guy right now".  It rained on and off for the next 50 miles and I had spent more time at my first stop than I planned so at the second stop, I just got out, used the biker boys room, quickly looked over the store and hopped back on the bike.  I made it to Murfreesboro right on time and quickly changed into my evening wear, which means I took off the rain gear and swapped shoes.  This wasn't supposed to be a formal event, thank goodness.

See I told you this was going to be a long post.  I'm not even near close to being halfway done yet.  That reminds me, I saw a thing on Facebooger recently that I really liked.  Some folks see the glass as half full, some see it as half empty, I prefer to see it as having room for more drank.  Speaking of drank, back to our story...

So the evening begins and I hook up with my buddy who proceeds to introduce me to everyone there.  I really felt like a VIP being treated to all the backstage stuff.  I ate with some of the songwriters of tunes that everyone knows, I drank with the Master Distiller at Jack Daniels, and more importantly, got to hang out with a bunch of really cool people who care about doing things for a great cause.  I didn't mention earlier that one of the benefactors of the Darryl Worley Foundation is the CF Foundation itself.  I was more than grateful to be there and was able to personally say thank you to these folks for helping someone like me to live.  We shared stories and laughed a lot.  I was able to talk to a lot of folks about CF Riders.  It was an incredible eveningalready, but it was just getting started.  Well it was time for the show to start and some opening remarks were made.  My buddy, who I owe a butt kickin' for putting me on the spot, made some truly thoughtful and wonderful words about yours truly.  I won't be able to put it as eloquently as he did, but he said something along the lines of the fact that we were all there that night to raise awareness of CF and that a little over a year ago he met a guy who wasn't so much coping with CF on a daily basis, but more like kicking CF's ass on a daily basis and because of the generosity of folks there that night that I was able to do what I am doing.  I'm not sure about the ass kicking part, but I agree with everything else.  Those people were there to help folks like me.  Picture this folks, a Harley shop with all the bikes moved to the warehouse and tables brought in for people to sit at.  A bar, a fully catered spread, and wait staff to get whatever you needed.  I mean this is what should be on CMT or VH1, a true singer/songwriter event.  I was truly in awe....this was for me, and this was for everyone else who fights CF daily.  This was to honor those who have died in battle with CF and for those who will be born with CF tomorrow.  Sometimes words fail to accurately portray emotions that are felt.  This was one of those nights.  You see folks, CF can be a very lonely disease.  Most folks don't understand what we deal with on a daily basis.  We very often hear the words "well you don't look sick" or " wow you look great for having CF".  You know the phrase, you never know a man until you walk a mile in his shoes...well, I think a CFer could have coined that phrase.  CF hurts.  CF hurts physically, emotionally, and spiritually.  It invades every aspect of your life and only a special few can walk with us in battle against this disease and really know what we deal with.  I don't say it near enough, but Mrs. CF Rider is a gift from God above and I know this.  Most folks couldn't handle the weight of CF.  Heck, I'm not even sure I would be strong enough to handle parenting a CFer, knowing what all it entails.  To those of you who have or are in the process of, I tip my hat and acknowledge you as the heroes of our stories.  Thanks to my mom and dad, and my brothers.  To them, I was just a normal kid and allowed to be such.  All this to say to my fellow Cysters and Fibros...we have allies in our fight.  There are others out there raising money and doing great things for US!  We just have to keep up the fight.  Eventually we will win and CF will be talked about in medical history books as a thing of the past.  We are closer than we we were yesterday, but still further away than we will be tomorrow.  To my TN family, I will never be able to thank you enough for such an inspiring night and for allowing me to be a part of your family.  All I can do as repayment is to stay in the saddle and keep fighting the good fight.

Flash forward to the events of this week and other current issues.  The tragedy in Colorado makes us all take pause and realize just how precious life is.  Like many of you, I awoke Friday morning to the news that some idiot had shot up a theater full of people.  Like many of you, I went through the normal emotions that follow something like that, and like many of you I began to pray for the families of the victims.  I had some of the same questions and said some of the same words when I saw this guys face who took the lives of innocent people.  After that, I began to move on and continue with my life.  That sounds cold you say?  To that I say you are the cold one for only thinking about how precious life if when an unspeakable tragedy occurs.  You see one of the blessings of having CF is that we realize how precious life is everyday.  I wake up each day knowing that it is an incredible gift that I don't deserve, but have somehow been given.  I may not always say thank you to the one who gave it to me, but I try to honor Him by trying to make the most of it.  Somedays making the most of it can be just getting out of bed, other days it's riding somewhere to spread awareness of Cystic Fibrosis.  Sometimes, it's working all day and sometimes it's simply giving thanks for the food we eat.  Life happens everywhere in between all that and most normal people only pause to think about the gift of life when something crazy happens.  We're shocked, we want justice, we grieve for the families, then we forget about it and become self absorbed in our own little world again and take up the sword for whatever the current issue of the day is.

That leads me to a post i put on Facebooger the other day.  I said "If we start boycotting businesses because of what they believe in, we're gonna have a bunch of broke companies and an economy in the crapper. Dig deep enough into any company and you're bound to find something you don't like. As for me, I choose to worry about bigger things, like life."  Yes, I am referring to some of the hoopla going on about Chick-Fil-A.  Now, I'm not so vain to think that what I post might actually piss people off, but I did consider that some folks might see this as callous and narrow minded.  To those people who read that at face value and not put thought into it, you're right, it is.  All I can give is my opinion and my outlook on things and I'm simply saying that there are bigger and more important things to worry about than what whoever makes your chicken sandwich thinks about the issue of marriage equality.  The fact of the matter is that whoever is making YOUR chicken sandwich might just agree with you on your view of marriage equality, then again they might not.  Either way, it's a damn good chicken sandwich and little CF Rider loves to eat there and she is happy and it makes her smile when she and daddy go on a "date" there.  That's good enough for me.  At the end of the day if we analyze and pick apart every company that we support with our hard earned money, there is going to be something that we don't like.  If you boycott one, you should boycott all.  Do your research and form your opinion.  If you are bothered by it that much, boycott.  Just don't be selective and jump on the train of the news du jour.  As a buddy of mine put it "I think comfortable people without real, life-altering problems worry about that kinda crap. Some of us actually have to fight everyday to stay alive. The wonderful thing about this country is that folks have a choice. I choose to eat where the food is tasty and support businesses that treat me well."  Well said my friend, well said.  Stop being comfortable and walk a mile in someone else's shoes...

...as for me, tomorrow morning I will wake up to a machine that is made of parts all made in China or Taiwan.  I will turn on the lights in my bathroom provided to me by a company that generates electricity by a source that pollutes our environment (of which I am employed by).  I will wash myself with products purchased at a store that supposedly underpays it's employees so much that half are on welfare.  I will put on clothes and shoes that were produced overseas by workers with inhumane working conditions.  I will drink coffee at an establishment that supports my right to carry a firearm on it's premises.  I will pay bills to credit card companies and banks who cheat people on a regular basis.  I will ride my motorcycle that is a noise pollutant and strap on a helmet that my government forces me to wear.  I will travel on roads that are underfunded by a corrupt city government and go to a hospital who will charge me outrageous amounts of money for providing a service that should be a basic human right.  


But I will do all this, and do it willingly because my life depends on it.  You see tomorrow morning I start a journey that frightens the absolute hell out of me.  I've been scared of a lot of things in my life.  As a kid, scared of complete darkness, as an adult, snakes and spiders, but that fear doesn't compare in the least to what I face starting tomorrow morning.  Tomorrow morning I will start the journey toward double lung transplantation.  For the next 3 days, I will undergo tests ranging from my breathing capacity to my mental capacity.  They will evaluate how strong my heart is and how strong my support from loved ones is.  They will measure  everything to determine if I will be allowed to be given a second chance at life, that is once my current lungs are deemed to risky to continue with.  I will have to be sick enough to warrant a transplant, but well enough to be able to survive it.  As you can imagine there will be a lot going on the next few days and the rest of my life depends on what happens.  I have known for almost all of my adult life that this day would come, and truth be told, I am blessed beyond measure that it has.  Am I worried....yep.  Am I scared....you know it.  But like everything else that this life has thrown at me, I will look it all in the face and say "Let's Do It!"  After all, what is my alternative?  I have quite a few examples of people that give me hope and inspiration who have been put in my life recently, one of the redeeming values of Facebooger.  My buddy Kyle who had transplant and is doing great.  My friend Jerry who just ran a 10K race...only 3 months post transplant.  My new Cyster, Emily, who was released from the hospital only 9 days after transplant.  There are numerous stories about everyday heroes that you may not encounter.  If you are lucky enough to have the privilege, count your blessings, for you have just encountered the love of God himself.  He's proven to be pretty good at giving second chances.


"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah 29:11


Dream Big, Ride Free, Breathe Easy my friends....and practice Life everyday.

Another go at this blog stuff....the highs and lows.

So here I go again on my own...  HA! Did that just to get the old Whitesnake song in your head.  Now that you have a cheesy 80's hair rock song rolling around in your grey matter, I will get around to typing what I really have to say.  As you can see in the title, I'm going to try again with this blogging stuff, if nothing else just to get my thoughts down on something other than my shoulders.  A note to the punctuation police, I wasn't that good in English class and should have taken to heart what Ms. Moser said to me a long time ago, "You have a lot of potential young man, you just need to apply yourself a little more."  Truer words I never heard as a young 'un.  I'm going to ramble, I'm going to go off on tangents, and I'm probably going to lose some of you in the process, but that's okay because I heard a quote recently, "not all who wander are lost."  Well, I'm still wandering, and wondering, so that means I'm still here.  See what I mean...oh and for those of you who actually read and pay attention to this, let me know if you want more, or less, or none at all.  Comment on here, hit me on Facebook (CF Riders page) or find me on Twitter (@cfrider).


So earlier today I helped pack up my two loves so that they could go over and visit the best mother-in-law that I've ever had (her words exactly and i think so too) for a few days and so that means Mr. CF Rider gets to chill for a few days.  Now before you start thinking all that "while the cats away" stuff, remember, I'm  a pretty boring guy who doesn't really know much beyond my sphere of influence, which is obviously very limited, but currently expanding.  Well in the course of events that followed the lovelies' departure, I had to remove myself from the house and go for a therapy session.  Luckily my counselor is available 24/7 and works real cheap (most of the time).  Heck I think I paid less then $3.00/hr today.  Find a better rate and I'll.........well, good for you then.  For those of you who are slower in the uptake department, such as yours truly, yes I got out and rode my motorcycle for a while to clear the thoughts and cobwebs out of my brain, along with a couple of good oysters who seemed to take up residence in my lungs (CF reference).  I found myself thirsty and hot so I ended up somewhere familiar.  Yep, the Starbucks where Mrs. CF Rider works.  Don't you sit there and tell me that's lame for a biker, it helps me to miss her a little less, besides I thought if someone was here working that knows I am married to the best little barista in Alabaster, AL, my iced coffee might come free.  No such luck, to the ones on this shift I'm just another average 5'5'', 125 lb., guy with tattoos and an 800 lb. steel horse who fights for his life and for others on a daily basis.  You know, we're a dime a dozen and my coffee still costs more than $5.00.  Damn!


But I digress, regress, recess, and any other ess I can think of right now and want to get real here for a bit.  Many of you know what CF Riders is about, heck I hope if you are reading this, then all of you should know what CF Riders is about.  If not, then Google CF Riders, go to our website, like us on Facebook, follow on Twitter, whatever you gotta do to get your information (shameless plug).  So the past two years have obviously been a roller coaster ride for us and I will expound more on all that in the coming editions.  For now I want to talk about the past 3-4 months and how that has been captured for me personally in one day.


We all have our ups and downs and we just hope that the ups far outweigh the downs and are more frequent in occurrence.  I knew going into starting a non-profit foundation and especially waging war on something as heavy as Cystic Fibrosis that I would be put through the gauntlet of emotions.  I have experienced one of the toughest things in this world and one of the best in this world over the past few months.  Back in April, I was honored to be a part of a funeral for an amazing 11 year old boy who I had never met.  This my friends was hard.  Very hard.  I choke up to this day thinking about it, but it was something that I was meant to be a part of.  I will detail this more in the future as I promised myself and my buddy D.W. that I would.  That was a very low point, but I consider myself blessed to have been a part of it, and as God usually does, He made a mark on my heart forever in a good way that day.


Fast forward from April to this past weekend.  I was able to take part in an event that, again, humbled me to even be a part of.  I was able to ride from our HQ here in the 'Ham, AL up to a small town in the extreme southern part of Ohio.  That meant a lot of riding for Mr. Softass himself.  If you know me personally, you know I have no junk in the trunk per se.  I had to talk Mrs. CF Rider into letting me fly a solo mission and, as usual, she was supportive, albeit with some concerns.  I was able to go up and participate in a group ride that was put together by some absolutely amazing people in a matter of two weeks all to raise funds for another CFer who had just had a double lung transplant.  I was blessed to see a group of REAL people who care about a common purpose come together to do something amazing for someone in a time of need.  The whole time I had people thanking me for riding all the way to Ohio to participate and make a donation, but the real thanks goes to them for showing me what can be done when good people get together to take care of one of their own.  Again, I will blog about this further in the future, because I want to and frankly because these folks need to be bragged about a little more.


So how does all this come down to today Mr. CF Rider, you ask?  Okay, i'll admit, you probably didn't ask that, in fact you probably said " get to the damn point already, i gots other things to do!"  Well okay, okay, don't get pissy with me, i'm sorry for being long fingered.  I can't be long winded anymore with lungs like this now can I? 


So today, again, I am run through the range of emotions, albeit, at the same time.  I find myself ecstatic and so thrilled for a young couple in Georgia whom a wife and mother just received her second chance at life with lungs that were given by a selfless person who made the decision one day that with their death someone else may live...hmmmm, where have I heard that one before?  From all reports that I've seen she is doing wonderfully post transplant and things are progressing better than expected.  Again this is someone I have never met before, but hope to one day for I know that she will make the most of her gift.  Yay for God, yay for good.  May we never forget that there is a grieving family on the other end of a good transplant story.  Father, please thank this person for me as I know only you can and help to heal the void that is left in their loved ones souls.  Amen.


Still the other side of the coin is the one stuck in my craw (it's a southern thing, look it up).  I have been chatting with another CFer and other members of the family on and off the past couple of days.  It started out just commenting on a post that another CF friend of mine posted on because it seemed this person needed a bit of encouragement.  I admit it, we all need it time to time.  Mr. CF Rider needs it almost everyday, which is why Mrs. CF Rider bakes cookies, cupcakes, and Rice Krispy treats so often.  MMMMmmmmmmmm good.  Well in the course of further discussions, this CFer is sick and needs to be admitted to the hospital, as we sometimes do.  I find myself worried and praying for her and her family often and anxiously awaiting word on what is going on and why she is so sick.  I then come to find out this person is post transplant but yet is neglecting to take the proper medications to prevent rejection.  My first reaction was total and complete anger and I made this known.  Honestly part of me is still rather angry about it.  I mean how can you receive a gift of new lungs from someone who paid the ultimate sacrifice so that you could live, and to treat that so callously by not even caring enough to take your proper medications.  I was hard on this person.  I was hard on her mother.  Maybe I should have been, maybe I shouldn't have been, either way, it is what it is and it was what it was.  Maybe this person needed to hear what I had to say, maybe they didn't, either way I hope it was heard and received with the love that it was given, harsh as it may have sounded.  You see I have lost friends who would have given anything for those healthy lungs.  A family lost their little boy because he had bad lungs.  A wife and kids, lost their daddy because he had bad lungs.  Friends lost someone who gave them hope because she had bad lungs.  You name the situation, they have lost someone to this incredibly horribly disease which most folks still don't even know about.  They have endured incredibly pain, unbearable nights in tears, and countless questions without ever getting their answers.  And here is someone who isn't interested in doing what they need to do to continue life.  You see, these drugs are necessary after a transplant to continue living.  They help your body to not reject the new lungs.  In essence this person was consciously and knowingly rejecting them with their mind.  

Okay so I was pissed.  I got on the bike and rode a while.  I came to Starbucks got some coffee and started to write.  While riding I thought about what I was like at this persons age.  God knows I didn't do all of my treatments, but I was never so sick that a round of oral antibiotics didn't knock it out.  I was rarely sick at all....I was a normal kid.  I did stupid stuff with my friends.  CF never held me back from anything.  So the question begs, if CF did hold me back from being normal, would I have been different?  Would I have rebelled against this disease and cursed it day after day?  The answer is................................


........................I don't know.  That wasn't the hand I was dealt.  I like to think though that if I had to have a transplant at an early age that I would have been mature enough to do what needed to be done to stay alive.  If not for me, but for my parents who still try everything they can to protect me to this day, for my brothers who kicked my ass, locked me out of the house.........NAKED, stranded me on the roof after fetching a ball and making me jump down, for my friends who never saw me as anything but a friend, and for all the others I have encountered in my life.  I endured all that to make me the person I am today.....a FIGHTER.  I am thankful for each and every trial i've had because they have prepared me to do what I am doing today.  They have prepared me for the ups and downs and everything in between that I am experiencing today as we struggle to start our non-profit.  They have given me a voice, a character, a strength to persevere, and a will to fight for others.  


I just don't want anyone else to be deprived of that themselves, especially if we have the choice.  If you have a dream, follow it.  If you have a voice, speak it.  If you have a calling, answer it.  And if you have a battle, FIGHT IT.  You'll be amazed at your own strength and who you will meet on the battlefield to help you out.


DREAM BIG, RIDE FREE, BREATHE EASY.


bkj

Chapter 3: Cross Country - No Way I Can Do That

Hmmm, okay so the blogging more than once a month is not so much going to plan, but hey give me credit, i've at least thought about doing it more than once this month.  seems like something else always comes up or perhaps i don't feel creative enough to sit down and write.  I've never been much for journaling or keeping track of my thoughts, but this is something that is too important for me not to keep track of.  Again, for any of you in the cyber-world who are  reading this, thanks for your time, and please keep bearing with me...God ain't done with me yet.

So, again we pick back up on the road after the dream has been given to me.  Geez, i can't believe it is taking me two months to blog a 3 hour drive, but it's a good story and hopefully you keep coming back to read the next chapter.  All good cliff-hangers keep everyone wanting more.  Speaking of that, we like to watch Burn Notice, and it really chaps me that they only do like 8 shows and then take off about 6 months.  It's all good though because football season is here.  Okay, back to the dream.  So I'm told that I'm supposed to get a bike, ride cross country, raise awareness and support for CF and take my story to others...sure no problem...wait, you want me to do WHAT???!!!  Okay so once I regain semi-consciousness I pretty much say, well why not go all out crazy instead of just a little crazy right?  So I'm pretty much in a daze the rest of the ride home, but it was in a really good way.  I felt lighter, and a bit more free.  Even though I pretty much knew this dream would be squashed as soon as I shared it with anyone else, it felt good if only for a just a little while.  So I get home and give kisses to my girls, as I'm always happy to see them especially after a long day in Atlanta.  Hayden greets me with a great big "DDDAAAAAAADDDDDYYYYYY!!!" when I walk up the steps to the living room and Christie is watching something on TV.  I somehow muster up the courage to go and sit on the floor in front of the couch where they are hanging out and I give her the old "honey, we need to talk."  She says okay and actually put the TV on mute which means I have gotten her attention.  Now we all know that when someone says to you "we need to talk," it usually isn't a good thing, or at the very least it is something that is pretty serious.  So I basically just drop on her the whole conversation I had with God on my way home from Atlanta that day.  She kind of just looks at me and then finally says "welcome home."  So after sharing my calling to get a bike and ride it across country I proceed to tell her that she and Hayden are meant to go with me on this adventure following in the car.  She then just kind of sits there and looks into my eyes for what seemed like an eternity, although it was probably only a minute or so.  I will never forget the next words out of her mouth...you &^$@&^#&@ (^&^&(* *$@^@^%&!!!  No, seriously we don't talk like that in our house, but she did ask if I was serious and I told her that I've never been more serious in my life.  She sat and thought about all I had unloaded on her and then this incredible, wonderful, caring, loving woman and my best friend for life says, "Okay, let's do it."  I was floored, God had cleared the first major obstacle...my wife would let me get a motorcycle.   We then talked a little bit more about our fears, our hopes, our dreams and more importantly what we are giving of our lives.  I don't understand how or why, but God gave me such a wonderful gift when He gave me Christie.  He knew how much she would believe in me and how much I would rely on her strength to keep me going at times.  See I have the easy part, I have to trust in only one, that's God, she has to trust in God and in me.  She does both, and in such beautiful fashion.  And so, we have a team of 3 now...but I had to talk to someone about this, someone else who would understand it all because in all honesty, I didn't.

Chapter 2: I willingly accept.

First off let me say that I really hope to update this a lot more than once a month. There is just so much that I need to put down on the cyber paper to get up to date as to where we are. If you read this, please bear with me and I promise more goodies in the future. So where were we...

Ahh yes, when we last left off I was smack dab in the middle of I-20 somewhere between the 'Ham and the ATL. I was also smack dab in the middle of a crossroads that God was calling me too. Kind of like that red pill vs. blue pill thing in the Matrix. So which one do I choose. One path would keep me on my current road of being comfortable and taken care of. To live out the rest of my days with my wonderful wife and precious little girl, with the occasional vacation thrown in here and there and some good times and I'm sure our fair share of bad times as well, although we've seen enough of those to be good for a while. I can't complain though, I am still blessed beyond measure. That sounds like it would be a pretty good path to take as it is the same one I have been on for a couple of years now, but something all along has been missing. You see old Yoda was right back in the real Star Wars movies, not the last 3, but the first three which were actually the last three. Anyway, I think it was in The Empire Strikes Back that Yoda explains to Luke that anger leads to hate, hate leads to suffering, yayaya, you know that whole line. Well, that was my life. To put it another way, comfort had led to isolation, isolation had led to depression, depression leads to lifelessness, and, well lifelessness is just another word for death, except that you are still breathing, albeit selfishly taking air away from those who are living and really need it. I hope that makes sense, if not then oh well I know what I mean and you can ask me a question by leaving a comment on here. I didn't want to continue existing as a barely breathing skinny sack of bones. That's not who I want my wife to be married to, or my daughter to be fathered by, or my friends and family to see as an example of light in this world...the light i was giving off wouldn't fire up a lightning bug's butt (see you can take the boy out of South Georgia, but you can't take the South Georgia out of the boy. Much love to my hometown, Titletown USA.). In other words, I ain't going out like that. I said as much to God that day!

So I guess that leaves me with only one option, and I think God knew that. Funny how He puts you in a place to hear from Him when you really have no other choice BUT to hear from Him. He's done it to me before, but that is another chapter for another day. So God knows, because He is God and He knows everything, that I have always wanted to get a motorcycle, but that was a dream I had long given up. You know, because it's not practical, it's not safe, and besides, I'll shoot my eye out....oops sorry, wrong movie reference there. Anyway, what do you think of when you think about a motorcycle? Yeah I thought so, and that is what I thought too, CRAZY! No way I can get a bike, not with a 2 year old who needs her daddy around. So that dream was long since buried, covered with dirt so long and decomposing so badly you could probably smell it from where you are. Well in one fail swoop, God came in and knocked all that dirt off and brought my dream to life much the same way Jesus brought back Lazarus. God called my dream Lazarus and yelled loudly "Lazarus come out!". God reminded me of that dream and I argued about the whole crazy aspect of having a bike and how it wasn't safe and how my wife would never let me have one and this and that and yeah He wasn't really buying what I was selling. He pretty much said "I got that, let me handle the hard part, you just follow.". Oh, okay, so it's real easy to go home and share this with my wife and her not think I've lost my mind, not to mention all the other folks who look at me and think, "yep, that's a mid-life crisis if I've ever seen one". He pretty much tells me one step at a time and He will open the doors. Okay, I say, I'm supposed to get a bike, now what the hay am I supposed to do with it? I've never been on a motorcycle before, at least not one that goes faster than 40 mph and I didn't have to wear a big red helmet that made me look like Kool-Aid's half cousin. God said to me plain as day, "you will get a bike, you will ride it across this country to raise awareness and support for Cystic Fibrosis, and you will give hope to those who may have none and encourage dreams for those who are sleep walking. You will take your story, and make my name known.". Uh, okay...oh crap, maybe the comfortable life sounds a little better. Too late for that...

Chapter 1: The Dream Is Given

So here I was just riding home on I-20 from another day in the office when I found myself deep in thought. At first I imagined it was just a daydream, but then a still small voice began to enter my head. He began speaking to me...again. I knew the voice as I had heard it cleary before although it had been a number of years since I had heard it this pronounced. Undoubtedly it was Him posing the question, one that begged an answer and begged of it soon. To not answer would surely bring more isolation, more desperation, more depression, and ultimately death. But what if...what if His intentions were good? What if He truly loved me like everyone says He does, then what kind of life could I truly have? Yes, it was God who sat alongside me and was asking if I was truly ready to follow Him. We talked for a while. He showed me many things and pointed out certain areas in my past that would prepare me for this journey. He assured that if I were to follow Him, I would have a life that I could have never dreamed possible. You see the problem is that I have never really been able to dream, never been able to fully engage the thought of who I ultimately wanted to become or what I wanted to do in this life. I was caught in a rut, a prisoner in my own kingdom. Sure i have my queen and i have my princess, but we had nothing outside the walls of our castle. Until now. Now here before me was an offer of life And all I had to do was to say yes...yes I will follow...what will you have me to do?