Thursday, September 30, 2010

Joshland Question: Do You Ever Get Burnt Out Talking About CF Stuff?

Joshland Note: The following post is my honest opinion on the subject of CF and the toll it takes on relationships. It's not calling anyone out, it's not judging anyone on what they do or don't do. It's just an opinion. An honest opinion from a man who is doing his best to keep his blog honest...and full of typos. Oops. :-)

Q:Do You Ever Get Burnt Out Talking About CF Stuff?


OF COURSE I DO! It's not that I don't care about CF and those that live with it every day. I do, and if anyone says otherwise, all they have to do is read this blog, look at my body of work, or talk to me for five minutes and I will prove them wrong. However, it's a very fine line to walk. CF is an overwhelming and all encompassing entity that leaves little room for the "average" stuff. If you let it, CF will consume your life. There has to be a balance. When I get that "burnt out" feeling, I know i have to take a step back and analyze if everything in my life getting the attention it deserves.

When I get consumed by the CF world, it's not just hard on me, it's hard on my wife. It's strenuous on our marriage. My wife did not marry "CF Josh". She married the whole package. The guy who loves her unconditionally, just as she loves him. The guy who would walk to the ends of the earth to get her a cup of coffee. The guy who doesn't always rinse his milk glass all the way, thus driving her bananas. The guy who didn't see the point of starting a blog or social networking, but he was encouraged by his wife to start because it would make him happy and hopefully a lot of other people happy as well. She is a huge reason why Welcome to Joshland exists. But sometimes, she just wants CF to go away because it's too much of our life. The truth of the matter is, she is right. Sometimes it is too much. Sometimes it's all I talk about and that is NOT healthy.

CF also isolates me from the people who remember the guy that would talk about anything but CF. My friends and family outside of the CF Community rarely hear me speak about CF because they live it with me every day, so there is no need to beat a dead horse. Lately, it's been a struggle to find other topics to chat about when one of the biggest parts of my life is my blog and the videos with Moganko. Don't get me wrong, my friends want to hear about it and are my biggest supporters, but they also try to remind me that there is more to me than CF. I feel like I am getting better, but I guess they are the better judge of that than I am. Please friends and family: Call me out on it. Am I balancing things well? I expect an honest answer, people!

That question also got me thinking: What IS a good balance of a healthy CF life? When is it "acceptable" to pull back from fundraising and promoting awareness? It's different for everyone of course, but here's my take:

I've read, seen, heard or, and watched people be devoured by this monster called cystic fibrosis. I'm not talking about those that have the actual illness....

I'm talking about their loved ones.

The parents, spouses, children, grandparents, friends, and so on that fight the good fight, so to speak. Those wonderful people that love us so much that they are constantly promoting our cause. They start foundations, telethons, fundraisers, attend conferences, and spend every minute of their spare time on social networking sites posting links to wonderful causes and ideas because they want their loved one and everyone else to live long and healthy lives. It's remarkable and heartwarming to say the least...

Meanwhile...

Their personal lives are altered drastically because there is no down time.

I'll focus on parents as the main example, but fit this into YOUR life where it's relevant:

The divorce rate of parents who have a child with a chronic illness is higher than the national average in part because they forget to spend time with each other working on THEIR relationship. You know...The wonderful love that helped create the amazing child? It's pushed to the wayside to make room for extra nebs, doctors appointments, door-to-door fundraising, and blogging. It just doesn't seem balanced to me.

Now before you get all "Josh, you don't know what it's like to have a child with CF. You don't know the stress it puts on a marriage!", let me say this:

You are correct. I don't know what it is like. I was not, nor will I ever be, a parent of a CF child....

However, I did see first hand what it did to my parents relationship. I saw the stress and distance CF caused in their relationship. I saw the 2 AM feedings they gave Angie. I saw the stress at the dinner table where there was pork chops on a platter set next to a stack of unpaid medical bills. I saw the 10 page hand written letter that was given to 4 of my uncles and aunts outlining every single aspect of our CF care just so my parents could go away for the weekend. I saw my sister die despite all my parents did to help her live a happy life.

I WATCHED MY SISTER DIE FROM THE SAME DISEASE I HAVE. I WAS A CHILD WITH CF. I SAW IT ALL. SPEAKING AS A KID...I GET IT.

What I'm challenging you to do is to eliminate the letters "CF" from your home once in a while. To leave your kids with someone responsible and go on a date. Go get ice cream, go for a walk, go to a movie, go to somewhere romantic for the weekend and rekindle that spark that made your marriage happen before this bastard disease arrived. (That means "sexy time" for the more oblivious readers I have...I know you are out there. :-)

You are NOT bad parents if you aren't "FIGHT CF RAH, RAH, RAH!" all the time. In fact, I would say the best thing my parents and family ever did for me was not talk about CF all the time. Just when I needed a swift kick in the pants, so to speak. As a child, it was wonderful to know that I was just Josh who was occasionally "on duty" as "CF Josh". It was kinda like being a super hero with a not-so-secret identity. :-)

You are NOT bad parents if you take time for yourself. Self-preservation and alone time are essential to your sanity as a parent - CF or not. We CF kiddos are a resilient bunch and will be fine for a few hours and perhaps a weekend. I realize that this is not feasible for all the parents out there, but do yourself a favor though and take a look at your life for a moment. There has to be an hour in the day that you can treat yourself to something special. A bubblebath, a movie on the couch, time at the gym! ANYTHING! You parents may not realize this, but we want what's best for you too! Sometimes that means jumping off the band wagon for a bit. We need you at top condition! That means going out with friends more than once a month. Do little things to take care of yourself so you can take better care of us.

As far as family time goes, I have suggestion: Try to schedule time together that has nothing to do with CF. We used to have movie nights with malts and french fries. We would have game night, whether that was Super Mario Brothers on the Nintendo, board games, or playing outside, we just spent time together without talking about CF. It can happen...you can do it!

Don't you worry about the "Rah, Rah, Fight CF!" part. There are lots of people out there who are happy to pick up the slack. When you are ready, come back and fight with us. Or be a silent warrior. I know plenty of people who give money and send anonymous donation letters out to random people because they choose to not make their diagnosis public. That's fine too because they aren't letting this disease run their life. They do what they want, no boundaries and no questions. I respect the hell out of them for doing it.

We all have different levels of coping skills. Find your level and be comfortable with who you are. As long as you are giving YOUR maximum effort, then you don't have to answer to anyone about your commitment to the cause. I know it's there because I read it everyday in emails, on social networks, in videos, and in person. You are amazing. Now cut yourself some slack. :-)

I LOVE THE CF COMMUNITY! That being said, even Joshland needs to close for repairs sometimes. ;-)

Peaceful, Honest, & LOTS OF LOVE Things,

Josh

Sunday, September 26, 2010

Run A 5K...CHECK!


Joshland Note: If you are behind a few posts, click on the link to catch up on all this 5K madness. You should start reading from the bottom of the page to the top. : MY 5K JOURNEY

The race is over. You're now "a runner!" my wife said as she was handing me some water.

"I'm a hurt runner." I thought to myself....

Two minutes into the run I knew it was going to be a long 3.1 miles. The crowd of runners surged past me with what seemed to be VERY LITTLE effort. To make matters worse, my body wasn't ready for this weather. My lungs felt frost bitten from the 48 degree air. It was unlike any atmosphere I'd trained in over the last two months. My leg was finished 3 weeks ago, but the chill in the air stiffened it up even more. I pushed through because I needed to finish this race, but I knew it was not going to be pretty.

Running alone among a crowd of people, I felt so lost. My legs crumbling beneath me, begging me to stop. I slowed down for them, but I knew I couldn't stop. If I did I knew I wouldn't start again. All that training would've went right down the drain. I just had to keep going. Thank goodness I'm a stubborn ass. Oh, and the mom with the kid in the stroller who was hot on my heels didn't hurt my motivation either.

For some reason I couldn't get into a rhythm. I was the running version of Steve Martin in The Jerk...always off the beat. It was frustrating and humbling because I had so many good runs in the past few days. I didn't know how to fix it, so I just kept going.

The last leg of the race I saw my wife at the top of the hill.

"You're doing great, Joshy. Just keeping going." she cheered.

"I...(gasp)...hafta...(gasp)...finish." I choked out.

"I know you do." she said as she smiled at me.

I half smiled back at her and kept moving. Just then, I noticed a "Little Brother" struggling to keep moving, so I told him to run with me. I did not know his name, I only knew he needed me. We ran side by side until just before the finish. That's when I nodded at him and kicked in whatever energy I had left to cross the finish line.

After the race I was in pain and hunched over on the side of the path, coughing my brains out with no thought of what I looked like to onlookers. I started to well up with tears because I was hurt, but I was happy. I finished in 40 minutes. That's much faster than I anticipated. I pushed myself harder than I've ever pushed myself before. Maybe that's why I was off rhythm? I guess my unorthodox running paid off after all. 2 months of training and I still don't know a damn thing about running. :-)

After a long embrace from my wife and my mother, all I wanted to do was get my well-earned race t-shirt and head home. I left there with a piece of 50 cotton/50 poly pride and that was good enough for me.


It's my honor to inform you (as I sit here still hurting from the 5K 12 hours later) that I am officially retired from running. Not from exercise, just from running. My body prefers it that way as does my doctor. I think I do too. :-)

Thank you - friends, family, CF Community, and readers - for running with me today. You were in my head and in my heart with every step. Every single one of you. Please know that I believe in you too. Try your best to achieve the goals you set for yourself. I will be one voice in your corner, just as you were one voice in mine. A special thanks to my wife, mother, and step father for coming to the race. It meant a lot to me.

This is dedicated to Angie, Conner, Katie W., and all of my friends who have passed away. You will always be in the hearts of those who loved you.

This post is also dedicated to my friends who are still running a foot or a mile:
  • Emily (kick ass on your half in Motown, E!)
  • Ronnie (You can totally rock your 5K, Diesel!)
  • Jessica M. (Great job on your 5K!)
  • Rosie the Mermaid (Running the road and runnin' STAX!)
  • Big Mike from FLA!
  • Colleen (Hugs, baseball buddy!)
  • Rosie B (Keep pumpin' those lungs, girl!)
  • Chad and Kari (Thank you for never doubting me. Love you both.)
  • Kristi H. (Thanks for showing me what it takes to push yourself.)
  • And the slew of others I haven't even mentioned. You know who you are!

Here is my video of my 5K experience. It's something I am very proud of and will treasure forever:




Peaceful and Goal Reaching Things,

Josh

Friday, September 24, 2010

RACE DAY PROMO, BROTHER!

It's time to get jacked up for the race the only way I know how: By being a nerd. I decided to cut a promo about tomorrow's 5K and CF/cerebral palsy old school "80's wrestling style"! You can't take the nerd out of Josh even in a serious situation:

Here's my inspiration:



Here's my promo:



Who's jacked up for race day?!?! Me, BROTHER!! :-)

Peaceful, Yet Pumped Up Things,

Josh

Monday, September 20, 2010

Running Scared: Let The Cursing And The Pain Begin

Joshland WARNING: I curse a lot in this post. It's how I felt while I was writing. I am who I am and I don't apologize for it. I'm just being honest.

Over the past few weeks, I've been training for a 5K. I didn't mention it to many people because I did this on a whim and I was worried that I wouldn't be able to finish what I started. That I would let my friends and family down. Most of all....that I would let myself down.

To be honest, I have a few things going against me:

1. We all know about the effects cystic fibrosis and asthma have on the lungs. If this is your first time visiting W2J, go to the "CF INFO AND RELATED SITES" tab at the top of the page. FYI - CF and asthma make running hard, but the benefits of exercise for the CF Community have been shown time and time again, so I wanted to try. Let's move on, shall we?

2. Thanks to CF I'm not able to fully absorb the nutrients in my food. Therefore, I am severely vitamin deficient. In fact, my Vitamin D levels are untraceable on a blood test. It doesn't matter the amount of the supplement or way it's administered. For those keeping track at home, Vitamin D is the vitamin that helps strengthen and sustain your bones. My doctor and I worry that high impact running/training over even a short period of time could cause some major issues with my legs including bone fractures, sprains, etc. That sounds neat, huh?

3. What many of you don't know is that I have extremely frustrating case of spastic diplegia which is a form of cerebral palsy. There are cognitive and physical challenges that come with this issue. When it comes to running, my focus is more on the physical aspects.

This definition was taken from Google:

Spastic diplegia is a form of cerebral palsy (CP) that is a neuromuscular condition of hypertonia and spasticity in the muscles of the lower extremities of the human body, usually those of the legs, hip, and pelvis.

You see, when "Joe and Jane Average" use their muscles, lactic acid builds up over the course of exertion, causing spasms, stiffness, and pain. This is how my right leg feels every day. When I run, it amplifies the pain exponentially and slows me down a lot. I also sound like Long John Silver.

Step---CLOMP---Step---CLOMP when I walk.

Step-CLOMP-Step-CLOMP-Step-CLOMP
when I run.

Despite these annoyances, I'm attempting to check off something on my "To-Do List". I hope I survive. The following is my abbreviated and sporadic "Run Journal" from the last few weeks running every other day:

Goal: To complete the Big Brothers, Big Sisters "Little Steps For Big Reasons" 5K Run (3.1 Miles) Without Stopping.

Obstacles: cystic fibrosis, cerebral palsy, asthma, and all the symptoms they entail.

Week 1:

I tried to complete 1.5 miles running around my neighborhood a few times. I barely got through a quarter mile without stopping to catch my breath. I started to think this was a stupid idea, but I still finished every run taking into account that I am out of shape and was running outside in oppressive humidity.

My disappointment was magnified during one of my first runs when my cairn terrier, Oscar, was trotting and barely panting the entire time. Meanwhile, I was at full running speed and sounding like a hyena that swallowed a noise maker. I almost got my arm pulled off when little Oscar saw a squirrel. We showed that squirrel who was boss and sacrificed my ankle in the process.

Going forward, I've decided there would be no more poochy running partners.

Week 2:

I thought it would be in my best interest to train inside on my mother's treadmill since the humidity outside was so thick you could make a broth out of it. This way, I could build up some stamina on the ol' windbags in a controlled environment. You know what? It worked. I ran 2.5 miles, only slowing down for a quarter of it. The next time I ran, I decided to test myself and try to run the whole race.

I DID IT....WITHOUT STOPPING!

There was walking, coughing, and gasping involved, but I never stopped moving. I even ran the last .10 of the mile at a full sprint. At the end, I felt this sense of relief and pride. I could do it. I could actually finish this whole race without stopping. I shocked myself. My lungs were burning when I breathed in. I think it was because I was moving mucus that had not moved in ages. My right leg was not pleased either. For the rest of the day I was walking on a cement stump. It was numb and threatened to quit working with every jostle. But it was worth it. Kiss my ass, cerebral palsy. Kiss my scrawny, bony ass!

I had an additional accomplishment this week: I ran two miles while I was on vacation. I was pretty proud of myself for doing considering I was on vacation and had kinda whooped it up the night before. The discipline I learned from CF/ high school wrestling took over. Thank goodness for adversity teaching me to suck it up a little.

Joshland Note: Week 3 is missing because I was dealing with more important personal issues. I missed a few runs, but nothing significant.

9/10/10

My most discouraging run ever. This time it was my stomach causing the trouble. I should have been able to almost enjoy my run on a cool and crisp 55 degree day. Instead, I ran for the first mile with little labor, then all of the sudden it felt like tar was sloshing around in my stomach causing me sludge-filled pain. This wasn't normal "run through the pain" stomach ache either. It was debilitating. I felt like this was a test that I failed miserably. I finished 2 miles of my 3.1 mile run (most of it walking) and sat in the bathroom hunched over. What was I thinking running a 5K? I can finish this damn thing walking without laboring, but I'd love to finish this son-of-a-bitch race, you know...running. How on earth can I prepare for a race when my body is constantly plotting against me? I hate that I have no control over it. None. Fuck you CP. Fuck you CF. Fuck you body! I'll do it myself if you aren't going to cooperate.

Week 4:

Good runs and bad runs have filled this week. Chaos and stress have surrounded my days. I've discovered that getting into a rhythm has to do with your state of mind. When my thoughts are clouded with stress, it affects my run. I try to imagine all of the things that are good in my life and disregard the bad while I'm running, but it's really hard when there is nothing but your thoughts to keep you company. There is no getting around the fact that I will be in different physical shape when this is over. It's been great for my lungs (kind of), but detrimental to the rest of my body. My leg hurts with every step. My back aches and longs for heat. Then ice. Then heat again. My stomach does not enjoy having mucus sloshing around in it. It says:

"Stop running, you asshole! Go back to docile things like movies and writing. Let me stew in this green thickness while you soothe my pain with food, Mucomyst, and other such treats."

I'm tempted to quit, but then I think of how disappointed I would be in myself if I quit now. I've been training for weeks and I owe it to myself to see this through. My family and friends motivate me and I'm doing this for them and for you readers, but ultimately it's about me. Others can support and encourage me all they want and I appreciate it, but if I don't go out and do the leg work myself, it doesn't mean a damn thing. I'm doing this so I can say:

"I FINISHED A 5K! It wasn't pretty, but I finished it and I am proud of that!"

Be proud of who you are. If your biggest obstacle during the day is to go up a flight of four stairs, then take it one damn step at a time. When you get to the top say:

"I FINISHED A FLIGHT OF STAIRS! It wasn't pretty, but I finished it and I am proud of that!"

Because damn it, you just did something awesome. I will never forget looking out my window and watching Angela struggle to make it the end of the driveway to get the mail. When she made it back into the house she'd be wheezing, but she'd be so proud of herself. I kinda get it, sister. It's not even in the same stratosphere as what you went through, but I kinda get it. Maybe.

Focus on the little victories. Do it for yourself as well as for the ones you love.

Week 5:

I've read and heard the stories about my friends and strangers who have run multiple half marathons. I secretly wish that I could be them. I wish I could be my friend who finished their first IRONMAN, but wished they had posted a better time. Meanwhile, I take almost an hour to run/hobble through 3.1 miles. I run as fast as some people walk for goodness sake! I was simply frustrated with my runs the last few weeks. But then, something amazing happened...

During an evening run, I was a part of something that I can only describe as a "cinematic moment". Any attempt to recreate it will pale in comparison to living it, but I'll do my best for you:

So I'm running/huffing/puffing/hobbling on a trail by my house. I've decided to shorten my runs to conserve my legs. Instead, I've added short sprints for 30-45 seconds into my workout. This made my run more intense and cough-inducing than normal. The crud that's been coming out of me is the most disgusting stuff ever I've ever seen. It looks like melted chocolate with strips of broccoli in it.

Joshland Note: I'll give you moment to visualize that and dry heave if needed.

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

Welcome back! :-)

As I said, I was struggling to keep up the pace. To be honest, I was struggling to move. Out of the corner of my eye I saw a mother and her two girls riding up the trail on their bikes. They were closing in fast, so I gathered what little composure I had left and started trotting to save face. "Mom" was purposely trailing behind while the two little ones - one wobbling along on two wheels the other plugging along on training wheels - were hot on my gimpy heels.

The little sister on training wheels started riding next to me, so I kept pace with her and her toothy grin. Big sister saw this and sped up to ride with me. She was challenging me to keep up with her. I got this big smile on my face and said to her "Okay "Wheels", let's see what you've got!" Then, I started full on sprinting as fast I could. Big sister sped right up next to me and was smiling the whole time. Now, I don't know if it was a "this guy is slow as slow as a turtle" smile or a "this guy is pretty cool" smile, but it doesn't really matter. All I knew was that I sprinted as fast as I could for about 45 seconds until I started having an asthma attack and had to slow down. The girls sped off and their mother mouthed the words "thank you" as she passed me.

I finished my 2 mile run coughing and hacking, but with a little peace of mind. This was a sign that I was doing a good job. Maybe those little girls were like the kids I was running for. The "Little Brothers and Sisters" who need the money I am raising for their programs. The little CF kids that see the old dude with CF, cerebral palsy, and asthma trying his best to live his life. Most of all, I'm very aware of the fact that many people - CF or not - reading this would give anything to even attempt what I am doing. Know that you are with me. Every single one of you.

Nearing the End

I nearly ran the full 5K today, but I stopped a few times because my leg has had enough. I've also realized that running in the elements is much harder on the lungs than running on the treadmill. I've got two more training runs left. Both are scheduled for the morning at the same time as the race is supposed to start. That way, I can prepare myself for the "race day" conditions.

I've got less than a week left before the run and I'm very scared. I'm scared my body will break. I can feel my back and legs ache when I walk. I'm hobbling more than usual which is never a good sign. My right leg is in a constant state of numbness. My lungs hurt in a good and bad way. Broken blood vessels and tightness from the pollen-filled fall air are not good running partners. I've got mental stress that isn't helping matters either, but I can "oh poor me" all I want and it doesn't change what is happening in my life right now.

Bottom Line: Fear makes adrenaline run.


Through my fear, I will run/hobble my way to the finish. If my legs give out, then I'll drag myself with my arms. If my arms give out, then I'll go horizontal and roll my way across the finish line. I have to finish. It's on my list of stuff to do before my body says "No more, Josh". I don't care what my time is. I just want to finish.


I'll post pics and a short post later this weekend. Wish me luck!



If you'd like to donate to my run you can click on this link and donate whatever you'd like to. $1 or $1,000,000, it all goes to help kids believe in themselves. That's something I'm all for.

http://www.firstgiving.com/joshfromjoshland

Peaceful and Fearful Things,

Josh

Thursday, September 16, 2010

My Perfect Day Without CF ~ A Stolen Post Idea From Unknown Cystic and Others

Joshland Note: A few weeks ago I saw this post from one of my favorite blogs, the Unknown Cystic. He already stole this idea from Dr. Nanos at Please Pass The Salt. So I continue the new tradition. I thieved it from him, I did. I thieved it right good.

You can read the Unknown Cystic's post (and I highly recommend you read more of his stuff) here:

http://unknowncystic.wordpress.com/2010/08/20/stealing-a-post-from-dr-nanos/

My Perfect Day - Without CF

I would wake up to a kiss from my wife and the sound of barking puppies. I 'd feel rested because I wouldn't have insomnia thanks to coughing up mucus and stressing about life.

I would have an omelet with tons of meat and cheese and not have to find a bathroom in a panic 10 minutes later because I can't digest anything (enzymes or not).

I would take an hour in the morning to create my lesson plans for next week because I could be a teacher. One that wouldn't get deathly ill every time he set foot in a school. While I was working on my lesson plan, my boss would call me and give me a raise. I'd now make what a teacher should make and not what they actually make. My boss would also say that my students - who are doing exceptionally well - have nothing but good things to say about me as a teacher and mentor and that I should be proud of that.

Next, I would hit the gym to work on sculpting my greek-god-like body just in case I was called to action as a member of the volunteer fire department. My wife would come down to see me at the end of my workout and swoon over how great I looked while she ran her fingers through my full head of hair. Then we'd...ummm...you know..."hangout" 'n stuff. Hee hee.

After spending quality time with the wifey, she'd get a phone call from the airport informing us that we won the "You & Your Loved Ones Fly For Free Forever" contest they were having. The instant she hung up the phone her face would light up like a kid at Christmas. We'd sit down at the computer and go through the list of all the places we wanted to travel with no limitations because I wouldn't have to worry about getting sick.

While Carly was on the phone calling everyone we know, I'd head out for my weekly practice with my "RB/Soul/Doo Wop/Rockabilly/Big Band" Band. We'd sing everything from Elvis and Sinatra to Huey Lewis and Sam & Dave (Look them up on YouTube, people!)

Once I was done "getting my song on", I'd stop to pick up my wife's favorite lunch and
ponder how I was going to afford to travel as much as Carly would want to. As I hung my head in sadness, I'd notice my gas gauge on 'E'. While making a pit stop at the Gas n' Guzzle, I'd forget to push the 'pay outside' button on the pump, which would force me to head inside. That's when I'd impulsively buy a lotto ticket because the prize was up to 1 Trillion dollars (that's 1,000,000,000,000 in numbers). I never buy them because I never win, but what the hell?

When I'd arrive home, I'd see maps tacked to all of the walls and numbers listed by each of the countries on them.

"What are those numbers for, sweetie?" I'd ask Carly.

She'd go into great detail explaining her intricate numbering system, ranking destinations by weather, attractions, speed, and length of stay, but I wouldn't hear a word because I'd be to busy smiling at her and how cute she was.

"Are you hearing a word I'm saying?" she'd question.

"Yes, Dear." I'd say because I know it drives her crazy when I say 'yes dear'. I'd get an eye roll and a "you are such a shit" kiss on the cheek. We'd sit down to have our lunch (that I wouldn't have to find a bathroom in the middle of eating) and turn on the TV.

Newscaster: "We're astonished to learn that an ultimate vaccine has been discovered that will rid the world of all disease and illness. What's even more remarkable is that it was under our noses the entire time. The vaccines main ingredient is.."

"EEEEEEEEEEK! THE POWERBALL DRAWING IS STARTING!!" I'd scream after looking at the clock and changing the channel.

I'd receive another well deserved eye roll from my wife (this is the perfect day, not the perfect Josh) while we eagerly watch the drawing. I think it would go something like this...


Type in Motion - Spaceballs "The Combination" from Angel A. Acevedo on Vimeo.

My face would be stuck like this:



















What are the odds that my lotto ticket numbers and my luggage combination would be EXACTLY THE SAME?! Simply amazing!

Oh...AND WE ARE TRILLIONAIRES! AND THERE IS NO MORE ILLNESS IN THE WORLD!

Obviously, I'd have to change my underwear because I would have soiled them, but then I'd take a moment to think of Angie and how happy she would be that no one would have to hurt anymore like she did. Then we'd call everyone AGAIN to tell them that their mortgages are officially paid off and if they didn't have a house, then we'd buy them one. I'd spoil everyone rotten and give a ton to charity as well because who in the hell needs that much money anyways? Plus, I'd still want to teach because I loved my job that much.

At the end of the day, we'd go to celebrate our good fortune with my favorite meal - rigatoni and meatballs - and I wouldn't have to rush to the bathroom 10 minutes later.

Last but not least...I can't decide. Here are my options:

I'd crack open an orange soda and spend my evening snuggled on the couch with my wife watching the Twins win the World Series and The Vikings remain undefeated on their way to a Super Bowl victory!

OR...

I'd go out and sing karaoke with family and friends until I had no voice.

OR...

I'd have a movie marathon with my friends and family. Good times filled with popcorn and candy, soda and beer, movie quotes and rewinds. All good stuff.

Even if I was a trillionaire, I'd still be the same guy because I would never forget who I am and how important it is to share my success with others.

Perhaps I'll write a post on my perfect day WITH CF next month. That is my real life after all and I think I can still come up with a pretty damn good day even though I have this extra stuff to deal with.

Joshland Note: I just realized that the picture above is the same face I would have if Moganko tried to use me like a puppet. Ummm....ouch. Sorry Moganko. I'll be more gentle in the future, little buddy.

Peaceful and Perfect Day Things,

Josh

Wednesday, September 8, 2010

Beyond CF: My Buddy, Randy

Joshland Note: It's time for a guest post by one of my best friends, Randy. You know...the guy in the "Voyage To Lambeau Field" video blog. He drives me nuts, but I love the kid to death and I know if I ever need anything he will be there for me instantly. So when I asked him if he wouldn't mind answering a few questions for my readers he was all for it. Now for your reading pleasure, here is a no punches pulled perspective from from the Big Man. Thanks bro. Love ya.

Hello to all you "Joshland" friends,

Josh asked me a while back how I would describe our friendship. When I asked him why he wanted to know, he explained that several people have asked him this question: "How do you maintain close friendships when you have CF?" I guess I'd never really thought about it. We were just great friends that got along extremely well. I've known Josh since we played baseball in grade school. We didn’t really hang out, but were on the same team for years. That’s where he first earned my respect. For what ever reason, the poor guy would get drilled with the ball once or twice a game when he was at bat. This happened every single game for three years. Personally, I would have quit because that didn’t sound or look fun at all. Not Josh. He'd get bruised up every game, but he always showed up for every week to take his lumps.

After baseball we were still friends, but we never really reconnected until after high school. It all started with a house party we were both invited to. I'm pretty sure there was nothing but lemonade and finger sandwiches served at said party, but my memory is a bit fuzzy so I could be wrong. This is where our friendship really took off though. We were both avid wrestling fans and watched it together every Monday night. We also developed a mutual love of the Blues Brothers which became an obsession! For months we practiced songs and a created a whole routine that we performed at karaoke parties.. Oh yeah...we were good! Now, I fully admit he is slightly better at the whole singing thing, but only slightly and if he tells you differently he is a damn liar.

Some of my best memories with Josh have been us just hanging out and ad-libbing off of each other. Neither one of has ever really cared what people thought. We're just out to have a good time and entertain people. A perfect example of this is the time we were in line at a fast food restaurant:

So I'm first in line and Josh is standing behind me. Keep in mind I am about two times bigger than Josh so he could stand behind me unnoticed. There was this cute girl working behind the counter. When she was finished taking my order, she asked "Will there be anything else?" I smiled and said (without telling Josh) “Would you like to see my dancing monkey?” After she shot me a slight smile and confused look, I jumped to one side with my hands pointing to Josh. He looked at me, then her and started doing a goofy dance. We roared with laughter and she had a big smile on her face that made it all worth all of our stupidity. We still laugh about it to this day.

While our lives have taken different turns, we still remain great friends. We both push each other to be better people. It doesn't matter if he is being stubborn by trying to do something on his own that he knows he needs help with or I'm being jackass and saying inappropriate things at the wrong times. Neither one of us takes offense when called out by the other because we know we just want the best for each other.

Josh also told me that a lot of people have asked him this question: “How do your friends react to you having CF?” I hope you've noticed that I never mentioned his CF once during this entire post. While we do talk about it when something new comes up with him or he has to spend some time in the hospital, it doesn’t effect our friendship. With or without it he is my best friend because we listen to each other and just love to have fun.

It makes me sad that so many people aren't able to find a true friendship. Too many people worry about what others think of them and try to please everyone. The truth is that you CAN'T please everyone and you should just accept people for who they are. I have problems and I've made decisions in my life that have lead me down a path many don't agree with. SO WHAT?! Josh has been and will always be there to listen and to give advice or encouragement when I need it. The way I look at it, Josh deals with CF daily, so he doesn't need another person to dwell on it for him too. That's why we just have fun and don't worry about the hard stuff until we need to. Shouldn't all friendship be that way?

Thanks for for letting me share some stories, Josh.

Joshland note: Here is a little anecdote that encapsulates my friendship with Randy. Blunt, honest, and thoughtful. There is only one Randy. :-)




Peaceful and Honest Friendship Things,

Josh and "The Big Man" Randy

Friday, September 3, 2010

I Answer My Own Joshland Question: Why Can't Fix I The Ones I Love Most?



For the most part, I'm pretty good at dealing with stressful or life changing events. I'm not saying I have the composure of Ghandi or anything, but I do pretty well processing everything that comes at me on a grand scale. The little stuff can throw me for more of a loop if it sneaks up on me (i.e. - forgetting to pay a bill, wondering if I locked my front door when 99.9% of the time I do), but the big stuff I don't sweat. I presume it's because the big stuff is my "normal". It's happened so often in my life that I don't know any different.

That's why when my closest family and friends are struggling, I hate that I can't fix it. I wish I could take that pain on for them because I'm used to it. In my head I think: "I'm the only one that's allowed to be hurting in this friendship! Give whatever they have to me! I can take it because I'm used to it!" Being "broken" physically and worn out mentally are the things I do best.

Nothing I say or do will prepare a friend for their first time as a patient or as the parent of a patient. The mental preparation that it takes to allow that acceptance can be so hard. They are going through all the scenarios and wondering if they could have done something to prevent this from happening. This may sound strange, but there are days when I feel lucky to have had a chronic illness all my life. I've had time to process things and get used to the fact that I am sick or that my sister was sick so when scary stuff actually happens, I'm prepared for it. I can't even fathom what it must be like to be fine one minute and then be told you're sick the next. Or to have what you think is a healthy kid, only to find out they are going to have some extras for the rest of their life. Extras that make you feel like you are the only one on the planet who has to deal with them. Even when you realize you aren't the only ones, it still hurts and rightfully so!

Nothing I say or do can justify to a child why mom and dad are gone so much when that child's only wish is to see them more often. Those same parents who are working long hours or the graveyard shift just trying to make ends meet and provide for their family. When they finally do get home they are supposed to be "Super Parent" with all that "reserve energy" they magically have stored up in there pocket, only to pass out sitting straight up on the couch from pure exhaustion with one shoe off and a sock dangling halfway on their foot.

Nothing I do can explain why the people and animals we love most pass away, why couples who want babies struggle to get pregnant, why some people are so malicious and vile, and why some people feel sad enough to worry if they will ever be loved. Why does anything on this earth have to suffer?

I cannot fix it, but I can do something: I can listen. I can hold your hand. I can be there if you need me to be. I can leave you alone if you'd like. I can encourage you and tell you that things will get better. That wounds will heal with time and, though they may leave scars, they are a permanent reminder that you survived something big because you are amazing. Most of all I can I love you with all my heart because that's what I do.

To my close family and friends who are struggling - I am here if you need me and I am ALWAYS thinking of you. I love you so much.

Peaceful Things To All My Friends,

Josh

What'd You Think?

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Peaceful Things ~ Josh
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