Thursday, December 22, 2011

The Moganko For Cystic Fibrosis Awareness Project Launches NOW!

I've been working my butt off to finish this project for over a year now and ladies and gentleman....the day is here! The Moganko For Cystic Fibrosis Awareness Project officially launches right now!

I dedicate this to The CF Community, my loved ones, and all the volunteers who made this possible. I also want to dedicate this to my sister Angie, Conner Jones and everyone else who is with us in spirit! Enjoy the music, the magic, and the fun of this project!















http://www.mogankoforcf.org/

Share this project on your websites, write blog posts and share the videos on them, and send emails to your entire contact list! People need to know about it so Moganko can meet the Muppets! You are the heart of this project. It won't happen if you don't talk about it.
As a matter of fact, make sure the topic comes up at during your holiday dinner. :-D

MOST IMPORTANTLY....

Make sure you join the Moganko For Cystic Fibrosis Awareness Facebook Fanpage! That is THE key element to all of this!

I'm off to enjoy the holiday and the soak in all the hard work everyone did to make this a reality!

Dream Big,

Josh

Thursday, December 15, 2011

The Things She's Missed...

















It's been 18 years since Angie left this earth. I can't believe it. She's missed out on A LOT of big things in 18 years. My mind is drawn to 1994, since she missed it by weeks. Here are just a few pop culture milestones:

• OJ Simpson's trial. Man she would've been glued to Court TV during that one!

• She never saw movies like Forrest Gump, The Lion King or Pulp Fiction.

• She never heard music from artists like Sublime, The Fugees, or one hit wonders like Dead Eye Dick and their song "New Age Girl".

• She missed out on "Friends". She would've loved that show. (Sorry Molly, you know it's true.)

• She wasn't able to voice her opinion on politics and politicians.......I don't wanna talk about those. ;-)

As I write this, I find that it's the little things I miss more than anything in the world. I wish she could've:

• Met my wife and her family.

• Seen all of our little cousins who aren't so little anymore.

• Met her stepfather and stepmother and known that her parents were happy.

• Been my older sister as an adult. I want to believe that we'd have been best friends and we'd have helped each other through all the hard stuff while enjoying the happy things that life has to offer.

This Christmas is going to be hard because it's the first one without my Dad, but I'm not as sad about that as I thought I would be. Don't get me wrong...I hate that he's gone and I've certainly cried my tears because Cancer is an SOB and Dad wasn't ready to go, but he told me that he had 60 years on this earth and he was okay with that. He's right. Neither one is fair, but I'd rather have 60 years than just 16. Hell, I'm pretty pleased with 32 years when you consider that tomorrow isn't promised to anyone.

I could go on and on, but I'm rambling and you get the point. I believe she's seen all of it from heaven, but it's just not the same. Call me selfish, but I want my sister back.

I miss you Angie. Say hi to Pop for me. Don't worry, I'll keep taking care of Mom.

Love,

Josh

Thursday, December 1, 2011

Jerry Cahill's CF Podcast Takes a Trip To Joshland
















My appearance on Jerry Cahill's Cystic Fibrosis Podcast that was recorded this past summer is up and available for your listening pleasure. Jerry and I are really proud of this podcast because it was unlike any other podcast either one of us had ever done before. Trying to find the right balance of seriousness, humor, and honesty when talking about death in the CF Community is a very tricky task, but I think we did pretty well.

Jerry: You're a moral and decent person in a world where they seem to be lacking and you're certainly someone I would use as a great example of determination and honesty...CF or not. I have the utmost respect for you and the wonderful things you do for the CF Community. I hope we can stay connected and perhaps work together on another project in the future. Maybe Moganko meets Mr. Cahill in the Big Apple? You just never know.


http://jerrycahill.com/
It's appropriate that this comes out in December with Angela's 18th anniversary looming. My God, has it been that long? I say that every year, but it seems like it just happened yesterday. I miss you Angie and I always will. I hope people will flock to my blog and support The Moganko Project thanks in part to this podcast, but more importantly I hope people who listen to this podcast will find comfort in the fact that our loved ones who leave this earth are always with us in our hearts.

Click below to listen to the podcast where I talk about the loss of my sister, acknowledging my sadness, and moving forward to honor her memory.

Josh on Jerry Cahill's Cystic Fibrosis Podcast Presented By The Boomer Esiason Foundation

Peaceful things and lots of love,

Josh from Joshland and Mr. Jerry Cahill

Friday, November 25, 2011

Honest Thoughts About The Moganko CF Project

As my self imposed deadline closes in I can feel the stress compound. I carry this load by my own will, but that doesn't make it any easier to bare. I've still got a lot of stuff to do: take care of myself, finish 4 videos -including shots for 2 music videos and editing all 4, finish 1 multi-page photo montage, and stay peaceful.

Confession: I'm NOT a project manager. Pretend as I might, I am a terrible organizer. I lose my keys and wallet several times daily, I over-schedule myself, and directions might as well be written in gibberish at this point because English has now become a foreign language. Still, there have been signs of intelligence from time to time. For instance:

I've never considered myself a perfectionist, but I've been told more than a few times on this project that I'm determined to find that perfection if it kills me. In other words, I'm anal. I guess I just want certain aspects to be perfect. The lighting could be lackluster, the editing sub par, but the puppeteering, the music, the words, the message to the world: THOSE MUST BE IMPECCABLE. If this is going to work for children, then those things must be simple and clear. A tilt of the head one way or the other and Moganko says something different. The lips must be synced in the video so that the kids who follow along are able to focus on what's truly important...their health. If this is going to motivate those who have no clue what CF is to help me, then they have to see, feel, and hear the passion that this project is supposed to have.

I've never taken on anything of this magnitude before and—if I can lay all my cards out on the table—I'm really scared that all the hard work that these volunteers and I have done will be laughed at, that I will lose friendships (if I haven't already) because they think I'm obsessed with this puppet and this project. Even more so, what if no one helps me? What if I do all this work and people say "Meh...it's 'aaaiight', but nothing great." I think I may break down and cry before I even finish. When I started this whole process, I had no idea it would take over a year to accomplish. I also had no clue that within that year I would become sicker than I ever have been, watch my father fight cancer until his final breath, become an honorary member of a college a cappella group at 32 years old, and fully embrace what little skill I have as a puppeteer to reach for a dream. What a strange and unforgettable journey it's been.

But guess what? I'm not stopping now! If it takes me forever, I will finish this @#$%$ project. I have to prove to myself (yet again) that I am not a failure. Call it a self-esteem issue, but sometimes I lack confidence. Unlike many people I know, I share that so called weakness because I believe there are many who feel the same way about themselves and it helps to hear that...or read it in a blog.

Bottom line is that I'm scared, but I'm still trying. I've got the kids and myself to think about. That's all that matters. I wish I could convince myself of that. Please help me by wishing me luck. I'm gonna need it if this is gonna work.

Peaceful Things,

Josh

Sunday, November 13, 2011

The Joshland Rap & Your Part in The Moganko CF Project



Moganko has mad beatboxing skills. :-)

I created this song because I like rap music and while I'm certainly nothing special when it comes to rhymin' skills, I thought it would be fun to give it a try. My initial thought process went like this:

"What's the most ridiculous thing I can do musically to entertain the kids?"

Seconds passed...

"I could attempt to rap. Yep....that oughta do it. " :-)

Singing, or rapping in this case, is a great and fun way to do airway clearance therapy. I encourage you to use this as a tool with your kids. I put the lyrics on the screen so the kids could try to keep up with me. This will force breath control and probably create some BIG TIME coughing fits. I know it did for me and I KNEW where to breathe. ;-)

As far as the musical and visual creative aspects of the Joshland Rap video goes:

It took me a few days to write the lyrics and a few weeks to find the right beat, but when it came to the melody and hook I was stumped. I had an idea of what I wanted, but it didn't sound right when I tried to sing it. I needed some help...so I called my buddy Rose from "Breathe" and she happily volunteered to lend her beautiful and soul-filled voice to this silly little rap song. She legitimizes what I wanted to accomplish with this song because:

1. She is ultra talented. I know you've all heard "Breathe" and love it. I do too, but, man oh man, if that's the only music you've heard from Rose, then you are missing out. She has so much talent and charisma it's amazing. When I think of all the people on the radio right now, I can only name a handful that sound as phenomenal on stage as they do in the recording studio. Rose has those quality in spades.

2. She knows she is more than CF. Sometimes (and rightfully so!) people get so wrapped up in a part of their life—CF or otherwise—that they lose their personal identity. Not Rose. We talked about how important it is to find that balance between promoting CF Awareness, yet treating it as just one of the many important aspects that make up our identity:

"Artists are artists intrinsically. We are singing and dancing, painting and writing. (We are ) creating (because) it feeds our soul. I want to be recognized for my music and my life with CF on two separate - but equally important - levels." ~ Rose Logue

Amen, Rose. You are wonderful and I'm so glad we've become so close. :-)

Check her out here singing one of her new tunes and like her Facebook Page so you can find out about her new LIVE album from the soon to be launched rosierecords.com:



Rose Logue on Facebook

Then there is the video:

• Each t-shirt I wear in the video represents a CFF Great Strides Walk Team or a CF-related organization that is dedicated to improving the quality of life for the CF Community. See if you can pick them out. The yellow one is my CF Foundation t-shirt from when I was a kid. Sadly, it still fits me. Kind of. Thanks to everyone who sent me a shirt. :-)

• My little buddies from the W2J Posse who were so excited to be in the video. :-) They just wanted to hang out with the puppet and help me make CF kids happy. It was a lot of fun "on the set" that day. I think we spent two hours shooting footage and only got about 30 seconds worth that was useable, but lets be honest: When you're working with joyful and rambunctious little kids, then 30 seconds of footage is pretty good. :-) I love them all so much. Thanks for helping me, kids. You made this video amazing.

• And my longtime friend, Elysia, a professional puppeteer who has been spending A LOT of time shooting videos with me as well as helping me create the premise for the Basses Wild A Cappella music videos. She has a been a life saver and has brought another element of passion to this project.

Elysia told me that in her experience with live puppet shows, the results are often instantaneous and then never seen again. The fact that these videos and this music can be replayed over and over for people to learn about CF and will always be available to bring happiness to CF children who are struggling makes her so happy and proud.

I don't think these last few videos would be as successful without her helping hand...err...arm...whatever. Thank you, Elysia. I'm forever grateful.

WHAT YOU CAN DO:

As we near the launch of the Moganko CF Project this is where I ask you for your help. Start sharing these videos. Start writing about them on your blogs and on your social networking sites. I can do all of this creative work and gather up all of these amazing volunteers, but it won't mean a damn thing if people—especially little ones in the CF Community—don't see them. Share the videos as often as you can. When the site launches, share that too. Grass roots campaigns only work if they are set in motion by their supporters...I.E. - YOU!

You can even start sharing the project website: mogankoforcf.org as a way to pump up the troops. The full content and message of the project and the website will be posted as soon as it's all done!

Peaceful and Rhymin' Things!

Josh AKA MC W2J

P.S. - If you liked this, wait until you hear the a cappella songs. :-)

Friday, November 11, 2011

Josh, Where Have You Been?

I've been here, I've been there, I've been everywhere...

I won't apologize for taking a break from blogging, but this post should explain why I did for so long, what I've been up to, and why you'll have to wait until December for consistent blogs again.

• I can't believe I'm about to say this, but thank goodness for that long stint of IV antibiotics over the summer, otherwise I don't know if I would have came out from the sadness and chaotic nature of my father's death in very good shape...physically, at least. Mentally I still struggle, but that is a very healthy part of grieving and I'm taking the steps (forward and backward) toward emotional peace. It's a long journey and one that I may never fully finish.

• I recorded a podcast with Jerry Cahill this past summer that should air sometime this month. Jerry is a well known and highly respected member of the CF Community and it was great to meet him in person. The two things I took away from my time with Jerry were:

1. He's a regular guy. He takes his responsibility as a role model in the CF Community seriously, but he doesn't let it change who he is. Humility and respectfulness go a long way with me and Jerry has ample amounts of both qualities. My favorite thing he said to me was "Josh, you're a goofball...and I mean that in the most complimentary way possible." That's certainly one way to describe me and if that's how people will remember me when I'm gone, I'm okay with it. :-)

2. Our conversation was interesting because this topic hadn't been addressed before in any of his previous podcasts. You'll learn things about me that you may not know and hear my honest thoughts on a very difficult topic. It's been so long that I don't really remember everything I said, but I know that I shared my thoughts the way I always do...with honesty, love, and the utmost respect for everyone's personal journey with CF. I'll post the podcast on here when it airs.

• I've been going in for weekly infusions of liquid vitamins to see if they will raise my very low vitamin levels. It's too early to tell if things are working, but I'm confident that they will help my already ultra sensitive immune system battle cold and flu season. As with everything else in the CF world, it's a matter of trial and error until you find the right fit. Cross your fingers for me.





• A few weeks ago, I had the honor of being the keynote speaker at the "Breathe and Believe Benefit Dinner" for the Christopher Ricardo CF Foundation in Miami, FL. I introduced CFvoice.com's "Breathe Song Event" and shared my thoughts on the optimistic reality of my life and the future of the CF Community. The DeVito and Ricardo Families gave me warm and gracious welcome. I felt like a part of their family and that I've made really great lifelong friends.

The benefit dinner was a great success and (if I do say so myself) I rocked my speech like nobody's business. I even got on stage afterward and sang "Keep Your Hands To Yourself" with The Urge—a popular "new classic rock band" in the Miami area. I hope to find a video of both the speech and the song eventually (since I forgot my camera at home...doh!). Until then, here's the original version of the song by the Georgia Satellites:




It was also great to meet Gayle Greenberg, CF Mom and Senior Director of Major Gifts for the CF Foundation. We had a very similar message to send that night: We are improving the quality of life and are this close to a cure of this disease, but we still need your help to do it! Thanks for the lovely chat, Gayle.

I received so many complements on my speech and my message which made me feel so proud because I did what I was brought in to do: I shared my story and raised awareness for myself and 70,000+ others just like me across the world. I'll continue to be a part of improving the quality of life and finding a cure for this disease and I'll support any and all causes that benefit the CF Community. Plus, I'd love be able to make a little income for my family too. If you'd like to book me to speak at your events, CF-related or otherwise, please email me at welcometojoshland@gmail.com

Oh, and if you are in the Southern Florida area, I highly suggest you connect with the Christopher Ricardo CF Foundation. They're great people who are passionate about the CF Community and embrace this challenge with realistic optimism. Check them out here:

Christopher Ricardo CF Foundation

LAST, BUT NOT LEAST...

• The Moganko CF Project...I've been working my tail off trying to finish this before December. Honestly, I never thought this "little project" would turn into what it's turned into, but it has. Three original songs—two of which were recorded with Basses Wild Men's A Cappella at Fuzzy Slippers Music Studio— that were created for the CF Community and the world to enjoy. These songs capture the positive energy I wanted to have for this campaign. Plus, it's a simple way to promote CF Awareness that could be huge! Of course, that all depends on you, my friends and readers. When it launches you'll know exactly what you have to do to help me.

By the way, Basses Wild and I will be premiering and performing the songs live at the U of MN CF Center Education Day on November 19th. It's so exciting and nerve racking all at once, but I've always thought if you aren't a little nervous about something, then you must not have a passion for it. Thank goodness for nerves. Months have become weeks. Soon the weeks will become days, hours, minutes and seconds. All I can do is cross my fingers and hope that the future will be as bright as I imagine it will. I've worked hard so on this project that I know it will be great, but a little luck never hurt anyone. :-)

December I'll be back to writing my blog. Not only because I've missed it, but because—as much as I love Moganko—I'm more than just a novice puppeteer. I'm a guy with lots of stories that I want to share...CF and otherwise. Until then, Happy Turkey Day!

Peaceful Things,

Josh

Monday, September 5, 2011

The Only Post I'll Ever Write About God...MAYBE

Uh oh, it's a "taboo topic"! I'm sure I will rattle someone's cage with this post, but not a single word on here is meant to hurt anyone. I'm grieving my father and this is how I do it...by sharing my soul.

I'm trying to be open and present during this entire experience with my father. You'd think grieving and loss would be "old hat" to me and I'd fly through the process like a trooper. If you actually believe that, then I have a bridge to sell you for REAL cheap. The truth is, I feel everything right now: Happy, sad, angry, afraid, remorseful, jealous, and so much more all at once. I'm like a volcano ready to erupt, spewing emotions out like lava that will incinerate whatever crosses it's path.

Unfortunately, I'm not the only person in the world to experience loss, nor am I the only person to examine my beliefs in times of great sorrow. I believe God and heaven exist, but even if they don't exist, it can't hurt to believe that their are angels are watching over me, protecting me as best they can from pain and misery. It can't hurt to believe that there's some place wonderful where we all go to be together after we die. A place full of hope, love and peace. I imagined my father having the ultimate enlightenment the instant he passed away. A surge of peace where every question he had was answered and every ounce of anger he contained vanished. Where he held his daughter and father in his arms as if they'd never been apart, all while heaven erupted with cheers like the clock striking midnight on New Year's Eve. Isn't that a nice thought? It kind of makes me envy those who are gone.

I've also thought a lot about judgement. About how it's human nature to judge one another as though we are the ones who make the decision of who gets into heaven and who doesn't, like there's a secret knock or something. I've seen hateful and vile acts come from people who preach the gospel every day. I've also seen amazing acts of love performed by those who aren't religious at all...but again...that's all my opinion. We can condemn people all we want down here (and we do, that's for sure), but I think that God gives everyone the opportunity to get into heaven and many different ways to get there. God is also perfectly capable of figuring out the difference between someone who is false and someone who lives a life full of love and compassion. When we point out others faults or sins to God, that's like telling a boss how to do their job, which rarely works out well for the subordinates.

I'm not a perfect man, nor am I a perfect Christian. I don't go to church every week. I don't always pray before every meal. I've certainly made choices I'm not proud of and hurt people I wish I hadn't. That being said, I'm trying my best to reconcile my mistakes by being honest with people and treating them the way I would want to be treated and the way God has taught me to treat them: with unconditional love, acceptance, and peace. I don't know if I will make it into heaven, but I sure hope so because I really want to be there with everyone else. Plus, I have A LOT of questions that need answering.

So...that's what I believe. Don't judge me, though...because I'm not judging you. I swear to God.

Peaceful Things,

Josh

9/7/2011 - Thank you for all of the comments. I love them all!

Saturday, August 27, 2011

My Fondest "Dad Story"...

Tuesday, 8/30/2011 - It is with a heavy, yet thankful heart that I let you all know my father passed away last night. After a VERY rough day, we were able to make him comfortable in his final hours. It was quite beautiful and peaceful, just as he wanted. He did not lose his battle to cancer. Everyone who lives each day against all odds will NEVER lose their fight against any evil. I love you, Pop. Say hi to everyone for me...especially Angie.

My family recently had an "anointing of the sick" for my father who is walking the path of terminal cancer. For those who aren't catholic or particularly religious, here is a synopsis of the sacrament:

"The anointing of the sick is administered to bring spiritual and even physical strength during an illness, especially near the time of death. It is most likely one of the last sacraments one will receive. A sacrament is an outward sign established by Jesus Christ to confer inward grace. In more basic terms, it is a rite that is performed to convey God’s grace to the recipient, through the power of the Holy Spirit."

I watched as my family placed their hands on him. I saw tears and trembling lips. I heard heavy sighs and nervous chuckles, but I never heard a word of that blessing that came out of the priest's mouth. Don't get me wrong...I felt the positivity and love in the room, but I was deep in my own world dwelling on my fondest memory with my father.
It's been very hard to think about (let alone write about) our time together without stirring up a lot of pent up emotions. Since he was diagnosed I've been trying to find a story that would best sum up our relationship. No matter what thoughts I came up with, my words would spiral out of control. That is until I thought of this particular story:

..........

My father picked me up early on a cold Saturday morning in 1994 to work at the Christmas tree farm our family owned just outside the metro area. I was excited because it was an opportunity to make a few bucks for Christmas shopping, but I was also leery because it was the first time in a long time (maybe since my sister passed away a year earlier) I was going to be alone with my Dad. This wasn't just a ball game or a movie. This was hours upon hours with a man I had little in common with. All I ever wanted was for him to be proud of me and—though I don't know if I was aware of it at the time—this was my opportunity to show him I could be a hard worker. I could be a man. At least...I could try.

We drove in unbearable silence, broken only by my father's inquires and sighs. The tension was so thick you could cut it with a hacksaw. I didn't have the answers to the questions he asked. Even if I did, I knew he wouldn't have liked whatever answer I gave him. He groaned and looked down at his half a pack of Marlboros, then tucked them deep into his overalls. He never smoked near me. Never...even when he was stressed to the hilt. He bit his lip and countered his cravings with a swig of diet soda. I was tempted to give him the okay to smoke a carton if it would start our day off on a good note, but instead I looked out the passenger's window and silently counted down the seconds until we're headed home. Not a good sign at 8:00 AM.

When we got to the tree farm, the doors of the Pontiac Riviera burst open from the pressure of our silence. There were several men my father's age running around the farm. All of them dressed in flannel shirts, orange stocking caps, overalls and dirt brown, worn down snow boots that had seen several holiday seasons come and go. I looked severely out of place in my neon colored nylon ski jacket and dark blue snow pants. The only similarity between us were my boots that were two sizes to big. I had to wear two pairs of wool socks to make up the difference.

The snow wasn't too deep, but it was deep enough to slow my snow waddle down to a pitiful crawl. I was so embarrassed I couldn't even look at my dad. I only imagined the look he gave to the rest of the guys and the possible tinge of regret he might have had bringing me with that day. In an insanely stupid move to prove myself, I decided to be on tree shaking detail. You see, after families came back with their tree in tow, I was supposed to pick it up and place it in the shaker that rustled the snow and loose pine needles from a freshly cut "ornament hanger". It was a short lived assignment because—as strong as I was—the combination of over-sized boots, slippery terrain and my case of spastic diplegia sent me falling flat on my face and nearly smashing my head on the metal shaker. I was red from the combination of snow and embarrassment. My cheeks were wet from sweat and tears. I didn't want to get up and was ready to stay there forever with my head buried in the snow like a newly discovered species of winter ostrich, when all of the sudden I was hoisted up by my armpits by my father. He smiled, gave me a one armed hug and said with sincerity:

"Nice try, bud. You almost made it. Why don't you head over and help tie the trees on the cars and collect the money."

I was shocked. I expected to receive the normal avalanche of teasing that was never meant to be mean-spirited, but sometimes went too far and broke my heart. Not this time. Maybe he saw how embarrassed I was or perhaps he knew how sensitive I had become after Angie died. Whatever the case, he never even smirked in my direction. Another rush of relief passed through my body as I headed over to metal cash box to get some change for my new collections assignment.

From that point on, Dad and I were actually having a good time together. I remember telling knock-knock jokes and throwing snowballs at one another while moving tree after tree off the lot. The wind was bitter cold on my cheeks, ripping into my skin with every gust, but I didn't complain. Things were going so well I didn't want to screw it up. I collected money from many happy families taking their perfect "Grizwold Family Christmas Tree" home to decorate together. I can't speak for my father, but it made me happy knowing that people would be spending time together creating family traditions, even if it was harder for us to do the same.

As the sun set in the golden purple sky, I wiped the snot from my nose and took my boots off inside the car. I couldn't see my dad...just the blurry figure beside me thanks to my fogged up lenses. I took them off to defrost by the window when I heard my father say:

"Good job, bud. You worked hard today."

"Thanks, Pop. I tried." I replied trying to hold back my tears and biting my quivering lip.

Dad put the car in drive and slid a cassette of Johnny Horton: The Battle of New Orleans into the tape deck. "Comanche the Brave Horse", "Rock Island Line", "Sink the Bismark" and "North to Alaska" blared on the stereo while we howled our predetermined verses at the top of our lungs and continued the chorus in harmony. The closer we came to home, the louder we sang. We wanted to hold on to that day for as long as we could.

W
hen the music ended, so did the state of euphoria. I stood in my driveway and smiled at my father as he backed out of the drive way, speeding up the hill and out of site. We were instantly back to reality and the struggle of being a father and son that never quite got on track.



Regardless of where my father and I have been, where we are now or where we are going, I'll never forget the day I knew that my dad was proud of me...and that my dad IS proud of me. I'll cherish that memory for the rest of my life.

...........


When the anointing was finished, I could sense the relief in the room. An aura of peace that only happens when we open ourselves up to it. That's why I appreciate when people ask me if they may pray for me. Of course you may! I'll take any form of love and positivity sent my way because regardless of what kind of prayer or well wishes you want to send, I know your gestures are ALWAYS sent with pure intentions. I send them back to you every time
I sign off "Peaceful Things" on a Joshland blog post. I believe that phrase transcends all facets of faith and goodwill because as I've said many times before: I do my best to love and accept everyone regardless of our differences.

It's in this spirit that I ask you to please send peaceful and healing thoughts to those who are struggling right now. Bring them the strength to live each day the best they can and continue to prove the world wrong. Peaceful things and lots of healing love to everyone...especially to my Pop. I love you, Pop...very, very much.

Love,

Josh

Monday, August 22, 2011

Moganko & Josh VS. Emily in "DRUM WARS" & The Story Behind It

Joshland Note: This is a long post with several videos, so find a chunk of time where you can really sit and absorb it. It'll be worth it, I promise!

When I started making these episodes, I wanted to pay tribute as best I could to the essence of "The Muppet Show"by putting my own CF-spin on them. I hoped they would inspire your children to take care of themselves and motivate the general public to research different aspects of cystic fibrosis on their own. This episode does all of those things and I'm so pumped to share it with you. But first, the inspiration and the back story...

Posted below are segments from two of the original "Muppet Show"episodes that gave me the idea for my newest Moganko adventure:

(These are videos from other people's YouTube accounts and are property of Disney/MuppetStudios who now own the creative genius of Jim Henson and his fellow Muppeteers)

Animal VS. Buddy Rich



Animal VS. Harry Belafonte



They speak for themselves, don't they?

W2J's "DRUM WARS"—featuring Emily Schaller from the Rock CF Foundation—highlights one of the original way airway clearance therapies ever used to help people with cystic fibrosis. It's called manual chest physiotherapy, AKA CPT. Without getting too technical, CPT is a form of therapy where a respiratory therapist (RT) or caregiver places a CF patient in several different positions on a large table. From there , the RT/caregiver pounds on different areas of the patient's chest for several minutes at a time to loosen mucus from their lungs so they can cough it out. While I don't use this type as much anymore (which must be disappointing to my wife because I know there are days she'd love to have permission to pound on me...hee hee), I know many people who use manual CPT as a effective form of airway clearance. Here's a link to explain what CPT is in greater detail:

http://www.uwhealth.org/uw-cystic-fibrosis-center/cystic-fibrosis-cf-treatment-manual-chest-physiotherapy/13791

I have lots of childhood memories of both my parents and other loved ones pounding on me while we listened to music to pass the time during treatment. Every so often they'd pound to the beat and do a mini drum solo to make me laugh and enjoy what was otherwise a pain in butt to tolerate as a little kid.

And then the idea popped into my head: What about a drum battle between a drummer and caregiver/happy pounder Moganko using me as his "drum"?!?! But who would be the real drummer? I'm friends with several drummers and even though I know they'd be up for helping me, I wanted someone with a connection to CF that would believe in what I was trying to do. Enter CFer Emily Schaller. When I started reconnecting with the CF Community a few years ago, she was one of the first faces to cross my path. I saw how involved she was in numerous CF awareness projects and fundraising events including playing drums at a CF benefit in her home town of Detroit. We eventually connected through our mutual friend—Rose from the Breathe Song Event—and a distant friendship was born.

When I explained what I wanted to do, Emily was on board without hesitation. She understood the concept and was open to all of my ideas. Most importantly, she wasn't afraid to be silly because she understood what this was all for...YOUR CF CHILDREN and CF Awareness. Like me, Em has an affinity for kids and wants to help them see a bright light in the often dark world of cystic fibrosis. It took almost a years worth of emails, conversations, snail mail and file sharing (oh my god, the file sharing...ugh...Em you are a saint. I'd have quit after a week. :-) to get her part in place, but damn it...we did it! Thank you for believing in me, Emily! I'm grateful for your humility and friendship. Click on this link to learn more about this wonderful woman:

http://www.letsrockcf.org/

But there's even more to this story...

I had to shoot Moganko performing CPT on me for the video, but I had no idea how I was going to do that...until my mother, Christine, and her husband "Big D" volunteered to puppeteer Moganko for this episode. They helped me set up lighting for the green screen, they hid behind the table and moved Moganko's arms...they did everything I asked of them and beyond. Shooting these episodes is NEVER easy, but they never complained. Why? Because they love me and believe in what I'm doing. Mom and "Big D"...I love you both too!

Last, but certainly not least... lots of love goes out to my wife who spent many hours this weekend being my "creative consultant" and putting the finishing touches on this episode. From the creating green screen backgrounds to moments of puppeteering, my wife was simply amazing. She does it because she knows it makes me happy and consequently makes all of you happy too. Carly, you are my sunshine and I love you more every day.

My final thoughts: After six months of being so sick I wasn't able to do any Moganko stuff, "DRUM WARS" was so important for me to finish...especially since we're hot off the heels of the FOX 9 news report last week. I'm proud of the work I did here and I can see things improving with each episode. Is this episode perfect? No. However, where it lacks perfection it exudes passion. I gave it my all. I love what I do and I love your kids...so does every person who has ever helped me shoot an episode of this silly little Youtube show.

So...after damn near a year of work...I proudly present to you..."DRUM WARS"!





Peaceful things and lots of love,

The "DRUM WARS" Crew

Wednesday, August 17, 2011

Moganko's FOX 9 News Debut!

Everything happens for a reason. I don't know why it does, but I believe it JUST DOES.

Before I go any further, it's important that I mention my friend and high school classmate, Amy, who was the main reason this story even happened in the first place. She is remarkable in her own right and if you take a moment to click on this link you'll see why:

Woman Conceives Despite Brain Injury

Amy talked me up to FOX 9 reporter Scott Wasserman—the reporter who told her story—and encouraged him to contact me for a future segment. After a few phone conversations, Scott the Reporter, Tim the Camera Man and Josh the "Puppeteer" ( I use that term loosely) ended up filming on Monday morning. Together we created a great story I am proud to share with you. Take a look:

Maplewood Puppeteer Cheers Children with Cystic Fibrosis: MyFoxTWINCITIES.com

I loved this story. Not because I was on the news or because people sang my praises, but because it made me feel like what I'm doing matters. Not just to the CF Community, but to people who have very little knowledge of what CF is and what it does. That is the entire point of Moganko and the essence of the "Moganko CF Project". That puppet teaches children about CF, facilitates conversations between CF patients and their loved ones and provides CF awareness to general public in a unique way. Guess what else? You were all there with me. Every person who had ever read this blog or watched my videos was sitting beside me on that couch Monday morning. You make me the man I am and this whole thing couldn't have happened without you. Period.

If the past 24 hours is any indication of the kind of support I've got behind me for the "Moganko CF Project", then I know I'll have nothing to worry about when I finally finish our long awaited "masterpiece". Thank you to Scott Wasserman and FOX 9 News for spending your valuable time sharing our story with Minnesota and the world. To all the people that found my blog because of it: Welcome to Joshland. Stay tuned and get ready because the little orange dude and I are just getting started.

Update: As of 4:45 PM on 8/17/2011, my story has 1000+ Facebook recommendations! I sent an email to Scott Wasserman and asked him if that was a good number. His reply: "100 is a good number and the most I've ever recalled having was 1,000, so, yeah, I'd say people liked it." :-) You, my Facebook friends, are A-FREAKING- MAZING! I love you all very much. I promise I won't let you down!

Peaceful things and lots of love,

Josh

Tuesday, August 2, 2011

Piper's "Blogger Challenge"

This blog is my participation in Piper Beatty's "Blogger Challenge" which you can read about at the bottom of this blog post. Here it goes....

There is a scene in Jurassic Park where Dr. Hammond and Dr. Sattler are sitting around a dining room table eating ice cream. Why are they eating ice cream, you ask? Well, because the world has gone to hell in a hand basket. The power has been shut down allowing the carnivorous dinosaurs to escape their enclosures and turning all of their loved ones trapped in the park into dino-snacks.

Despite the peril they are in, Dr. Hammond is still trying to convince himself that he can regain control of the park and the unknown dangers within...

John Hammond
:Now, the next time everything's correctable. Creation is an act of sheer will. Next time it'll be flawless.

Ellie Sattler
: It's still the flea circus. It's all an illusion.

John Hammond
: When we have control again –

Ellie Sattler: You never had control! That's the illusion! I was overwhelmed by the power of this place. But I made a mistake, too. I didn't have enough respect for that power and it's out now. The only thing that matters now are the people we love. Alan and Lex and Tim … John, they're out there where people are dying.

I must have watched that movie nearly a hundred times, but until recently I never realized how much this relates to cystic fibrosis. Control implies a sense of certainty. A complete and utter belief that we can predict what's coming and know EXACTLY how to handle it every single time. And THAT is our illusion. No matter how prepared we are, no matter how type A our personalities may be, there will be times with CF will knock us on our asses leaving us confused and wondering where to go next. Do I think CF is a controllable disease? No.

I can see the expressions on your faces. Pale as a hospital bed sheet, you're thinking: "Holy hannabarberra! Josh has given up, waved the white flag, cashed in his chips, pulled the fire alarm, abandoned ship! " To that I say, NAY, my good friends. I'm just being honest because if there is one thing I've learned in my 32 years living with CF, it's that the only thing for certain about this disease is uncertainty.

That being said, I do believe this disease is MANAGEABLE. How? By being compliant. Doing therapies, taking our meds, going to doctor's appointments, being active in some way. These are the tools we use to slow progression and to aide us in our quest for a "normal life".

But there is that word...compliance. Man, I wish I had the actual definition of compliance handy to share with you, my dear readers. Oh wait.....I DO! MMMWWWWWWAAHAAAHHH! (as I rub my hands together in a villainous "I-fooled-you" manner.)

Definition of COMPLIANCE

1
a : the act or process of complying to a desire, demand, proposal, or regimen or to coercion b : conformity in fulfilling official requirements
2
: a disposition to yield to others

I know this is not literally what our healthcare team (i.e. doctors, nurses, social workers, and to a larger extent our family and friends) wants us to do...but doesn't it feel like that sometimes? There are times when I think my healthcare team wants to leave a trail of Reese's peanut butter cups from my house all the way to a hospital room. Then, the moment I walk in room they slam the door and refuse to let me out until I agree to do IVs or some other form of sadomasochism.

When it comes to my healthcare, I do not have a disposition to yield to others. If I did everything my doctors ever told me to do, I would never leave my house. I would be on a strict regimen of treatments, medicine, drug studies and nothing else could get in the way. When I was a kid, sometimes my doctors made me feel like they were the "fun police". I can't blame them. My doctors became family. Sometimes a family is overprotective. I think that is one reason I went through my rebellious phase as a teenager. I was definitely a "screw compliance and screw CF" guy for a while. I figured what's the point if I was going to die young like my sister anyways? I skipped treatments, I lied about taking meds, and I did things that have had very negative and lasting consequences on my body. I was tired of being told what to do. I wanted to believe I was invincible. Oh, how foolish I was.

As an adult, I found that middle ground and the true definition of CF compliance:

Definition of CF COMPLIANCE

1. A combination of quality of life and healthcare management.

I feel a responsibility to take care of myself, but I know whether or not I can miss that treatment ONE TIME to hang out with friends. I'm brave enough to stand up for myself in the doctor's office while being open to opinions I might not want to hear. I may not have complete control of my CF life, but I certainly have control over how I handle it.

On a final note...

I want the guilt in our community to go away. I don't want people who are labeled "healthy CF patients" to feel bad for being that way and I don't want people to be angry and judgmental towards others for being healthy. They didn't choose to be healthy to spite you. Be happy for them. Cheer them on. Love them because they are living the dream every day just like you would if roles were reversed. I also don't want people who are really sick to feel guilty when they read, hear about, or see others running marathons or working 50 hours a week. As long as you are doing the best you can, that is all that matters. CF is an individual disease. The only similarities we really have are in our symptoms and the labels we are given (CFer, Fibro, Cyster, etc...). The severity of those symptoms and the way they manifest in our bodies are different. You don't believe me? Read about my sister. We had the same parents. The same mutation. The same environment. TOTALLY. DIFFERENT. DISEASE.

Most of all, I want the fear of the unknown to disappear from the CF Community. I don't want CF to hold you back, but I want you to know your limits. The only way you know those limits are if you TRY THINGS and LIVE LIFE. Have dreams, for heaven's sake. Will all of your dreams come true? Probably not, but as I've said before, I'd rather try and fail than fail to try. Life is too short to not live, try and dream.

Peaceful Things,

Josh

How to participate in the "Blogger Challenge":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Tuesday, July 19, 2011

Inside "Welcome to Joshland" Studios

Most of my time in the last month has been spent hooked up to a friggin IV pole for eons during the day, forcing myself to eat and feeling lethargic. It's also been spent wasting countless hours on YouTube learning about the human condition and the sociological implications that occur within that mammoth land of creative individuals and/or copyright infringement.

While on my YouTube rampage, I reaquainted myself with an interesting TV show: Inside the Actor's Studio. I won't go into great detail about the show..you can read about here...All I'll say is that it's a one on one interview conducted by host James Lipton that delves into the careers of his famous guests and makes every role or every vocation they've ever attempted seem like a work of art. Example: He recently called Jim Carrey's portrayal of Ace Ventura captivating. Now I like Jim Carrey and most of his movies but if Ace Ventura is "captivating" to Mr. Lipton, then I want some of whatever he's smokin'.

Anyways, James Lipton always ends the interview with questionnaire "originated by French television personality Bernard Pivot after the Proust Questionnaire." Since I'll never be on the show, I decided to answer them in "Joshland". Here are the ten questions:

What is your favorite word?

Try.

What is your least favorite word?

Hate.

What turns you on?

Making people happy. Oh, and my wife. Rawr!

What turns you off?

Selfish and close-minded people. The moment you think you know everything is the moment you know nothing.

What sound or noise do you love?

Laughter. Not the patronizing or faint kind. The real, honest, true "laugh so hard you cry" laughter.

What sound or noise do you hate?

My heavy breathing.

What is your favorite curse word?

My favorites are "son of a B@#$%!", "Motherf@#$%*!".

What profession other than your own would you like to attempt?

Firefighter.

What profession would you not like to do?

Homicide Detective.

If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates?

"You made it! I told you I'd forgive you if you just asked me."


Peaceful Things,

Josh

Tuesday, June 28, 2011

Rough Run...

I've never been big on talking about my current health situation - PFTs, IVs, and doctor appointments - until I know all of the information about it. Even then I hesitate to share unless it's a very serious situation because I don't want people to worry their pretty little heads about me. IT IS NOT A SERIOUS SITUATION, SO SETTLE DOWN. Don't give me that crap about you not worrying because MANY of you do. That is not something I want people to expend their energy on. Getting sick is just part of having CF and I roll with it every day just like anyone else does.

Now...here is the update:

I've been on IV's for the last two weeks. No you didn't miss a post, I just didn't tell very many people about it. My prior stint of IV's in April got rid of some of the infection, but not all of it. So we have a new battle plan in place. Today's CF clinic appointment was...meh. Not bad, but not as productive as I might have hoped two weeks into treatments. I take solace in the fact the this plan has always been "slow and steady wins the race". Part of my troubles has to do with allergies and asthma and part of it has to do with being more docile than I normally am. Being on IV's with the majority of your small intestine missing is a miserable and draining experience. I'm exhausted all the time and I can't be far away from a bathroom for safety's sake. My lungs feel better, but I can tell that they have a ways to go. I'm confident that I'll show more marked improvement once I'm able to be more active after treatments are done. When will that be? When I am better. :-) Please keep me in your thoughts because I need all the positivity I can get.

On a personal note, I've been through an emotional and angry time. Working through issues that have lingered for a long time, but have only recently resurfaced and caused me great pain and frustration. I haven't wanted visitors because I've had the disposition of a wolverine, not to mention that fact that I haven't had the energy for them. I'm publicly apologizing for snapping, being short, and/or being very distant with everyone for a while, but sometimes a guy (who is RARELY angry) has to work through his anger on his own time. I've said it once and I'll say it again...being angry is healthy and honest emotion that will destroy you if you hold it in. Staying angry for a extended period of time is not healthy.

On the "Moganko Project" front, we've been making progress. It's noticeably slowed down since I've been ill, but I'm hoping for things to get finalized for the late summer/early fall. Let's hope everything falls into place as it should. I'm not promising anything as my health takes top priority obviously, but keep your fingers crossed. It will become reality. I CAN promise you that.

Peaceful and Slowly Recouping Things,

Josh

Tuesday, May 31, 2011

Random Thoughts From A Frustrated/Prepared Man

Becoming the man I want to be has no end. It is a constant, ever-changing miracle that I'm never quite prepared for. Sometime it's like a broken record, skipping without end. Other times it's a smack to the face when I was prepared for a punch to the stomach. There are answers that float like a feather...gently gliding into my hands. There are answers that dangle just out of my reach like a kite that's broken loose from it's string. You can chase it all you want but you still have to wait until the wind dies down. I'm waiting for the wind to die down.

What's with all the metaphors and brooding emo-talk? Nothing. Things are okay...kinda. One things for sure, I'm not holding my emotions in. Anyone who knows me knows I can't shut up for more than 5 minutes at a time especially when my heart is broken. Right now I talk about the things that are consuming my life ad nauseam. It's to the point where it's almost detrimental to my mental and physical health.

I know I'm alright because I'm waking up every morning and I get to live another day. I know all this stuff will pass. It's going to take longer than I thought, but it will not stop me from finishing my projects. I just take them one day at a time. One project at a time. One moment at a time. Life may throw rocks at me, but in the words of one of my favorite pro wrestlers"Rowdy" Roddy Piper:

"YOU DO NOT THROW ROCKS AT A MAN WHO'S GOT A MACHINE GUN!"

I am scared, but I am ready for whatever comes my way in every facet of my life

Peaceful Things,

Josh

Friday, May 6, 2011

The Ultimate Game Of "Would You Rather?"


On Easter Sunday, one of my youngest cousins was playing the game "Would You Rather?". She threw out the choice of being smacked 15 times by a grizzly bear or being pelted with a full-grown lion. Those were her exact words. I immediately went with the grizzly bear because chances are that one swipe from a grizzly bear claw would be the of end me anyways, thus making the other 14 hits null and void. The image of having a lion tossed at me seemed to be a slow agonizing death full of lots of chewing.

Not a week earlier, I played this same game in solitude. I asked myself: Would you rather have a progressive genetic disease slowly take you down over time or have a healthy life for almost 60 years only to discover you have terminal cancer with little time left to spare? That's what I asked myself when I found out my father had cancer. Incurable and inoperable cancer.

At the initial appointment with the oncologist, I heard him explain all the options and his prognosis for my father. It was a bizarre and unsettling glimpse into the life of all the caretakers I've met whose loved ones have a health concerns or physical issues. It truly is a helpless feeling staring blankly at the CT scan on the computer screen and seeing the damage...everywhere. Having a nauseous feeling drop like a 3 ton boulder into the pit of your stomach because you know there was nothing you could have done to prevent this and all you can do now is work your hardest to give your loved one the best quality of life. You pray to God, fate, or whatever blows your hair back that some kind of miracle will happen and MAYBE a cure will be found. I am highly trained to BE the sick person, not be on the sidelines while someone else is "in the game."

Because asking doctors questions is what I've done my whole life, I retained enough conscious thought to comment on the findings and provide what little insight I could into this whole situation. If I can be perfectly honest though, the rest of my mind was in la-la Joshland.

The first thing I thought was:

"@#$%$#%@!!!"

I was just pissed off. At Cancer. At my father. At the doctor. At the way life works out sometimes. Without getting into great detail, I'll just say that my father and I have had a tumultuous relationship and—while things aren't perfect—I think we're both pretty peaceful about where we are right now. We don't need to have any life-changing conversations or rush through any apologies or awkward phases. Those things happened a few years ago because I didn't want to have regrets or circumstances cloud our words. We can't change what happened in the past...we can only focus on the time we have right now. I love my father and he knows that. He loves me and I know that. That's all that really matters.

Now it's a game of juggling my daily life and health issues while being there for my dad as much as I possibly can. After failing miserably at rearranging my daily routine to attend his first few appointments, my wife and I decided that I needed focus on my own health issues first. I'm still recovering from my recent hospital and home I.V. stint. If I start missing treatments and exposing my already weakened immune system to a hospital setting, then it could be detrimental to my overall well being and create other issues that might prevent me from being with my dad at a more pivotal time. I hate that I have to rank the importance of these appointments because they are ALL important, but that's the reality of the situation. Both of my parents and my wife wholeheartedly agreed.

I won't say anymore about my dad's health because that is his personal business. I can say that things are falling into place and he is doing as well as anyone possibly could be in his situation. Any positive thoughts for him would be greatly appreciated.

I debated whether or not to post this. It's been written in here for about two weeks, sadistically fermenting and staring at me every time I go to write anything new. I finally decided to post it because this blog is my stress reliever. Plus, it will ease the thoughts of those who are concerned for my father and for me. People—particularly in the CF Community—get concerned when someone goes AWOL with little explanation because it usually means bad stuff is happening. So, I'll tell you that things are as peaceful as they can be right now. I'll still be blogging, but there will be shorter posts and they'll be fewer and further in between. With everything going on—day-to-day stuff, my health issues, my dad's situation, the "Moganko For CF" Project (which is going really well, by the way), fund raising, and other miscellaneous stuff—something had to give a little. Turns out it has to be "Joshland" for the time being. Just hang with me, everyone.

I still don't have the answer to my game of "Would You Rather?". I wish this was just one of those hypothetical scenarios that could segway into the choice of being licked to death by adorable kittens or pummeled to death by a million balls of cotton. That an easy one: The kittens...no, no, no...the cotton balls. What about kittens made of cotton balls? Man...this game is hard.

Thank you to everyone who has been so supportive in the past two weeks. I've really needed it and you came through with flying colors. Love you all very much.

Peaceful Things,

Josh

Sunday, May 1, 2011

As A Part Of The "Moganko For CF Project", Here's a Sneak Peak At "Basses Wild"!

As a part of the "Moganko CF Project" or ("Moganko For CF Project" as I should start calling it), I've been working with an amazing group of a cappella singers from the University of Minnesota called "Basses Wild". Without getting too mushy, I will say that these guys are simply awesome—both in talent and in character. I believe that everything happens for a reason and that I was destined to connect with this group of fun-loving, compassionate, hard-working young men. Here is a sneak peak:



Feel free to share this video on Facebook and your blogs. The more anticipation for this project, the better. By the way, please "Like" the Basses Wild Facebook Fan Page today and show some support for a musical group that has gone above and beyond to help me promote CF awareness in the very near future. You'll see what I mean soon enough. :-)

Basses Wild Men's A Cappella Facebook Fan Page

Peaceful and Musical Things,

Josh

Monday, April 25, 2011

Things I've Learned Since My Last Birthday & Things I Need To Work On

Hey Everyone - Between hospital stays and life in general, it's been chaos in Joshland the past few weeks..hence the lack of blog posts. I'll get back on track soon enough...and hopefully I'll be in a more cheerful mood. I've looked back at my last few months of blogging and I've noticed a lot of "bummer" posts in there. While those feelings are healthy, it's time to take my own advice and move forward in my life. Here are some of the things I learned this year and things that I need to work on in the next year of my life:

• You will succeed at somethings and fail at others. This is life in it's truest form. The only definite in life is: YOU CAN ALWAYS TRY YOUR BEST, NO MATTER WHAT YOU ARE ATTEMPTING. If you don't try, then you're letting yourself down. If you try, at least you'll never wonder "What if?" years later.

• People in your life will disappoint you at one time or another, but it's important to give them second chances. If you do decide to give them at least one more chance at redemption (which I highly recommend that you do), and they disappoint you again, you have to stop letting them break your heart. Do yourself a favor: Keep the people who fill your heart with joy closest to you. As for the others, don't wish misery on them, but keep them on the outside where they can never break your heart again.

• I need to stop letting people get under my skin so easily. I get so pissed off about what other people say and do that I waste precious time and energy worrying about it. Life is too short to worry about stupid people...unless they are hurting others with their words or actions.

• Before you judge someone, get the facts. People are too quick to cast judgment on people they do not know...I include myself in that statement. Ignorance works both ways.

• I need to spend more time in the real world and less time on the internet.

I miss my real life friends. It's amazing who we lose track of when our lives get away from us.

• Be who you really are all the time. Even if you are an asshole, at least you're being your "asshole self". I may not like it, in fact, I may despise it, but at least I'll know who I'm dealing with. I loathe fake people. LOATHE THEM.

• I need to be confident in my decisions instead of second-guessing everything. I need to be more of a planner. I need to be the leader that I know I can be.

• I don't have a ton of guy friends and I can't relate to a lot of the ones I do have. Some of the stuff they talk about is beyond me. Sometimes I feel stupid around them. Maybe I'm too sensitive? I don't know why I feel that way, but I do and sometimes it bugs me.

• I really miss network TV Saturday Morning Cartoons. The good ones (scream it loud, children of the 80's!)

• I really hate when people bitch about how old they are. Shut up! You made it to this age! Not everyone is that lucky! Sit down and have your damn cake, open your presents, and appreciate that fact that people love you enough to celebrate the day you came into this world. I've been to a few 60th birthday parties over the past few years. Wow...60 years! They make it look so easy to get there, but I'm sure it wasn't. I'm certain it had just as much sacrifice as it did happiness.

Of course, I am a hypocrite. I didn't want a 30th birthday party. I didn't want the fuss and such over my birthday because I used to look at birthdays as a countdown to death. "Not much time left for me, so I'd better not rub it in fate's face by having a party." Even though I had a great 30th birthday, I think some people were disappointed in my choice to not have the big bash. I'm sorry guys and gals. I promise you for my 40th birthday party, I'll let you spoil the shit out of me. I'll even let you mock and ridicule me with age-themed and not-for-public-viewing gifts. Start the countdown!

• I was fortunate enough to recognize a special point in a friendship this year. I knew this friend loved me like a sibling when she brought me her food from the head table because she knew my portion would not be enough to feed my appetite. She may not have seen her gesture this way, but I did and I love her for it with all my heart.

• I hate the "CF 3 Foot rule", but I will never break it on purpose. I saw what happened to Angie and I don't ever want to chance giving someone else my bugs. There is a reason it's an accepted practice in the community. That was never more apparent to me than in this last year of my life.

• I'm running out of stories. Let me rephrase that...I'm running out of stories to share publicly. I've written a lot of stories. A LOT. The thing is, I'm not sure if they are things I want to post on the internet. Considering how I've bared my soul and pulled no punches on this blog, I think that's saying something if I don't want to post them.

• I hope, wish, and BELIEVE this "Moganko CF Project" will work if I have everyone behind me. When it's time...I NEED ALL OF YOUR HELP. That's what I want from you for my birthday: YOUR SUPPORT!

Thank you for all of my birthday wishes the past few days and I'm sure (well, pretty sure at least) that there will be more to come throughout the day. :-)I love you all very much.

Peaceful Birthday Things,

Josh

Monday, April 11, 2011

That's Life...

***
On Tuesday afternoon I laid tensely on the bed in the vascular access procedure room. It didn't help that the doctor placing my PICC line IV had to ask for a second opinion more than once. She gently pierced my skin with a shot of lidocaine that numbed the injection site. I wished the lidocaine would have traveled up to the limbic system of my brain because I was a emotional basket case and could have used a break in my day.


The walls that were closing in on me from nervousness and the mild sedative they used to open up my veins, so I tried to find one object to focus on. I chose a picture of dogs stacked in a pyramid with a cat in a tutu on the top. Underneath the picture it said:

"Never let them see you sweat."

Now I was annoyed on top of being nervous. First of all, don't dress your animals. Don't photographers realize how traumatized a cat is when you stuff it into a tutu? And don't give me that crap about Photoshop because I've seen the costumes at the department stores. I know what people do in their spare time. Secondly, these are cats and dogs. They generally sweat by panting which means their tongues are hanging out for the world to see. It would be impossible for them to hide their sweat. I mean, come on! My cairn terrier has a conniption fit when we turn the water on in the bathroom because he thinks he MIGHT be getting a bath. Finally, I noticed this picture was the only form of non-medical decor on their walls. I can only speculate what they say to the kids getting PICC lines:

"Now you just focus right on the kitty in the tutu and never mind those huge, scary machines and the smell of rubbing alcohol coming from your arm. Focus on the kitty in the tutu."

FOCUS ON THE KITTY IN THE TUTU?!?!?! Sweet Lord in heaven! I was about to go on a sedative-induced rant when I felt a sharp pain inside my arm and heard the vascular doctor say:

"Oh shoot, you're veins are constricting."

In my head I said "NO SHIT, SHERLOCK.", but out loud I groaned "Is ThErE AnYtHiiiiiNg I cAn Do To ReLaX tHeM?!" She calmly said to take deep breaths in an out while she maneuvered the tubing round. "Really?! Just gonna dig away in my vein, lady? Don't mind the grimace on my face. While you are at it, grab some rusty pliers and start yanking out hairs from my nether regions." I thought to myself. I tried to tell her that aloud, but I was kinda loopy from the sedative and I was in a lot of pain, so the sounds that came out were more like grunting than actual English.

Alas, the vein collapsed and she was forced to start over. Round two was uneventful except for the fact that the line was placed near my elbow, so now every time I bend my arm there is this nagging pain. Stupid doctor. Stupid veins. Stupid cat.


***

Such is life in the hospital. Carly and I had a feeling this was coming, though it was certainly not from lack of effort. I did everything I could to avoid the hospital from the moment I got sick this fall. I took extra meds, did extra therapies, I was active. You can read a little about it here:

Getting Things Out Of My Chest

In my mind I felt like we hadn't worn out all the options like we usually do, but I knew my body was exhausted. Between having night blindness from my vitamin A deficiency like I had in 2009 and moving slower than rush hour traffic from shortness of breath, I was like a fighter in the final round. Grasping at the ropes, refusing to go down, but strictly on the defensive, it was time for a counter punch. I decided to call the clinic.

Joshland Note: I know "the fighter analogy" is a little tired and annoying to some, but it suits my mood and I couldn't think of a clever metaphor that involved fluffy bunny rabbits...I tried, believe me.

I got a call back from the clinic later and I wasn't pleased with what I heard. "The oral antibiotics are helping you maintain your current pulmonary levels, but you aren't getting back to where we all know you can be. Many of your vitamin levels are undetectable." they said, and continued on—with a little hesitation in their voice— saying: "It might be time to consider going on I.V. therapy for a while."

When those words floated into my ear my whole body tensed up. I hate the hospital. It's always been a last resort. It triggers feelings of anger and frustration. Words like "consider" automatically make me think of the words "tune up". Back when my sister was on this earth, a "tune up" could me anything from a few weeks to a few months in the hospital. One time, my pint-sized older sister slugged her doctor as hard as she could in the shoulder when he suggested she go inpatient. It was easy for him to say because he wasn't the one who had to do it. The doc got to go home at night and see his family. He got to disconnect from all this CF stuff. I know a lot of doctors who take their work home with them, but it's still not the same. It wasn't back then and it isn't now as I sit in Angela's shoes.

It was a short stay in the hospital, but they are never short enough. Between minimal sleep, constant traffic in and out of my room and daily discussions about my health care plan, I was slowly going insane. Thankfully, I'm back at home, a bruised PICC line IV in one arm and a puppy in the other. It's by far the easiest I.V. schedule I've ever had, but that doesn't mean that it's ACTUALLY easy. It's still lots of prep work for a 10 push I.V. 3 times a day and a neon green multivitamin gravity drip. I'm coughing up a rainbow of goo, which means the meds are working, but it's gonna get worse before it gets better. My wife has taken on the brunt of the chores right now because I don't have the energy to do it, not too mention being my voluntary nurse. When I asked her why she loves me so much and how she deals with all this B.S. she said: "You are the nicest person I know and I love you so much. You are worth the extra work." That is love.

That's why I'm not complaining. You see, for every PICC IV I've had, I can damn sure guarantee that a lot of my CF readers—some of which are half my age— have had 10 times that many. I'll be done with my I.V.s in a few weeks while many of my kindred spirits will be on them for MONTHS with no breaks. It's a pain the ass and I know how mentally tough you have to be to get through it. I have so much respect and admiration for them.

That being said, I'm not going to pretend that this isn't hard for me. Things are changing in my life—MY CF journey—and I am learning to adapt. Am I getting worse? Is the phrase "tune up" or a slightly less offensive euphemism going to be part of my day-to-day jargon? The truth is...I have no clue. I'll find out soon enough, so I'm not going to worry about it. I've got more important things to focus on...like getting better.

Peaceful Things,

Josh

Friday, April 8, 2011

Racing in the "I.V. Pole 500"

I had to go into the hospital and start I.Vs this week (more on that in a later blog post), but I made sure it was "Moganko productive" for all my CF kiddos. :-)



Ladies and Gentleman! Start your engines!

Peaceful Things,

Josh

Sunday, April 3, 2011

Moganko CF Project Teaser

I'm not giving too much away, but hopefully this will get you excited for the eventual launch date yet to be determined. I couldn't do this without you, CF Community!



Peaceful Things,

Josh

Friday, March 25, 2011

Let Me Relax...

I pride myself on being appreciative of everything in my life, but lately I've noticed the things I took for granted while I was younger and the things I might miss out on as I get older...

If it's not one thing, it's another. If it's not a lung infection, it's muscle spasms in my cerebral palsy-addled leg. If it's not intestinal blockages, it's complications from mal-absorption of fat-soluble vitamins. I constantly need to evaluate what issues to focus on right now, what can be dealt with later, and come to grips with the reality that parts of my body may eventually need to be replaced. I feel like I'm a used car approaching the 100,000 mile mark.

Even relaxing is hard work. Traveling—which used to be a snap—isn't getting any easier on me. I love going on vacations with family and friends, but I hate the act of traveling. The scheduling, packing, driving, flying, deadlines. I HATE IT. It damn near kills me. Once I get to my destination I'm usually good to go, but my last few trips are showing me that there is a cost for joy and pleasure. Change of diet and of climate send my lungs and my stomach for a loop. While everyone else is by the pool enjoying their vacation, I'm doing another therapy, trying not to cause a ruckus or draw attention to myself and stopping the antibiotics from helping the sun scorch my skin. I'm lethargic and frustrated. I'm high maintenance. I am not myself. I am with friends who care, but I feel all alone because of my health. CF doesn't take a vacation, even if I do. Still I appreciate the fact that my body is well enough to travel because I know several people with CF and other illnesses that would give ANYTHING to be where I've been...complications be damned.

I also see families on their vacations spending time together. Little girls on their daddy's shoulders and little boys wrapped in their mother's arms. I see the joy it brings, but I also see the hard work it takes to get there. My wife and I are well aware of what we are giving up if we don't have kids, but we also know we are gaining time together. When my body breaks down on vacation I automatically feel thankful we don't have little ones to worry about. We don't have to explain why Daddy is napping in the bed on vacation instead of playing in the pool with them. I have friends with cystic fibrosis who are phenomenal parents and wouldn't trade that gift for anything in the world. I say more power to them. It's a beautiful thing to see and I envy you with every picture you share and every story you tell. I just don't think we're willing to make that same choice. That makes me so sad, but so peaceful.

When I think of where I've been, I often wonder where I'm going. As a man and as a CF patient.
I'm excited and scared, but that's what makes life worth living.

So, if I might take a moment...

"Please spirits, fates, Gods, and angels: Let the hard times be few and the good times be many. Let the breeze of peace cool me when I'm hot and let love warm me when I'm chilled. Let my body work without the pain and let my mind be soothed by the tranquility that surrounds me. Let me appreciate what I have and forget what I do not. Let me relax...without the hard work."

~ Josh from Joshland


Peaceful Things,

Josh

Sunday, March 13, 2011

Interesting Habits & Phenomena Of Blogging


I've been blogging for some time now and - since I have writer's block the size of Mount Rushmore - I thought I'd share some insights about the experience so far:

• I've noticed a rise in the quality of my story-telling from when I first started. Unfortunately, the grammatical and punctuation errors remain. Note to self: take breaks, let your wife be your editor, and stop using so many damn commas! They breed like rabbits!

• I find it interesting to see which W2J stories or blog posts are the most popular. I often say aloud "Why did people like that story?" Was it because I included a video? Was my story-telling better in one story or another? Was it the topic choice? Perhaps I should entice you with a free box of steaks if you read the posts I LIKE the most...Hmmm? One day I'm going to write a ludicrous title like "How Cystic Fibrosis Treatments and Watching Chimpanzees on YouTube Increases The Dexterity of Your Toes" and then in the body write "GOTCHA!!!" Just to see how many people I fool.

As a matter of fact....



• I find myself checking my Blogger account for comments quite often the first few days after I write a new post and I'll admit I get a little bummed when I don't have any. It's not like I cower in the corner, sobbing and screaming "PLEASE VALIDATE MY HUMOROUS OR HEARTBREAKING ANECDOTES!", but your comments do give me the warm fuzzies. I appreciate them and I thank you for taking the time to write them.

• I wonder if people click on the links I add to my stories? Sometimes I click on those links just to make sure it's headed to the right place. The last thing I'd want you to do is end up at "Wally's Freaky Kangaroo Observatory" website instead of "CFWally's" blog post about CF. I know from experience. Not about the kangaroos, but about the random links...nevermind.

• When I write a blog post/ story, sometimes I try too hard to be funny and totally miss the mark. Other times, people laugh at parts that I never intend to be funny. You are all a bunch of weirdos. Just kidding...you are all very nice weirdos.

• I recently confirmed a suspicion: Some of my closest friends and family rarely read my blog.
I've always suspected this to be true. I think some can't handle the CF parts, some are just too busy, and some have heard the stories a million times. Perhaps the most common answer is "Why read it when we lived it with you?" Good point, my friends. I understand completely and I'm not mad at all. On the other hand, people from all phases of my life have found my blog and complemented me on my honesty and my writing style. You should see some of the touching letters and emails I've received. You know who you are and I am saying thank you. Love you all regardless if you read this or not.

• I worry too much about offending people when I write my stories. If people don't like what I write, then they should stop reading it. I'm not going to start writing malicious and slanderous things, but if I find something amusing I'm going to post it from now on.

• As an avid blog reader, I don't enjoy when I see people trying to make their blogs seem bigger and better than they are. Don't do those things. It makes you look petty and small. Come by your readers by the content of your character and the creativity of your posts, not false pretenses.

• If you like something someone else writes, link to their blog and give them some credit rather than reposting what they said on your site. They should extend the same courtesy to you. That way you''ll share readers which is a great and fair thing. At the very least, you should ask permission to post someone else's work.

• I'm having writer's block right now, which usually means I'm preoccupied with other issues. When I have writer's block, I get a little nervous. I need suggestions for stories. Please comment on this post if you have any ideas.

Finally....

• I have 4 main goals for this blog:

1. To write my story in my own words and publish a book about my life with "unpublished stories". Ooooooooooh. Aaaaaaaah.

2. To make people happy. That's more of a life goal.

3. To promote CF Awareness. When I started blogging this was not a goal of mine. W2J just kinda grew into a "CF blog". I had no idea about the power of the CF blogging world, but I've happily added this goal to the list. Thank you for reading my stuff, CF Community.

4. To continue to book speaking gigs that help people struggling to find their place in the world. I've done a handful of these gigs and I've heard nothing but positive reviews. I hope they are telling the truth because my hope is that if one person hears my story - the story of an average guy who does the best he can with what he's given every single day - and believes in themselves and their future because of it, then I will leave this earth a happy man.

Thanks for everything, Joshland Readers. I'll keep writing as long as I can. I hope you'll keep coming back.

Peaceful and Thoughtful Blogging Things,

Josh

Peaceful thoughts go out to anyone and everyone affected by the devastation in Japan. Here are several ways you can help out:

Japan earthquake and tsunami: How to help

What'd You Think?

One of my favorite things about my blog are the comments I receive on my posts. I am so thankful that you take the time to write them. I may not respond personally to everyone, but make no mistake...I read every single one.

If you'd like to leave a comment, but don't have an account that's listed in the drop down menu, choose the "Name/Url Anonymous" options. Then write your comment, fill in the word verification and click "Post Comment". I will receive an email and post your comment once I've approved it. :-)

Peaceful Things ~ Josh
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