Tuesday, December 25, 2012

The Great Gifter

I woke up much later than I normally would have on Christmas morning that year. We'd just buried my sister a week earlier and Christmas seemed pointless at best. The one thing I wanted...I couldn't have: My sister sitting on the couch, curled up in a blanket with Christmas light twinkling in her eyes. Still, I trudged through that morning pretending that I gave a #$@%. Mom sat near the tree while I passed out the presents. I lifted the tag of a gift that wasn't there a few days before to see Angie's bubbly script underneath. I was shocked.

"How did this happen?" I asked my mother.

"Angie had all her shopping done early. Wrapped and everything." Mom said with a smile.

Angie had a very meticulous mind. Every choice she made and every moment she planned was done with the greatest of care. Christmas was no different. She didn't just like to give gifts...she liked to give the BEST gift of the day. The one that would make eyes sparkle with excitement and a smile widen just a little bit more.

The final months of 1993 were not healthy ones for Angie, but Mom told me that Angie managed to find the time to finish her Christmas shopping and wrap her gifts in between hospital stays. Again, I must remind you—as I do with every "Angie Story"—that this was before the internet and the convenience of shopping at your fingertips. If her shopping was going to get done, then Angie had to expend the energy she didn't have to do it. A daunting task for a young lady struggling to breathe.

Angie didn't want my mom to come so it could be a surprise for her too, so she spent the day with one of her dedicated and newly-licensed friends traveling the harrowing roads surrounding the mall near our home and bearing the chaos of shopping madness. She walked every step, climbed every stair and made every decision in person. I can't imagine how exhausting that must have been for her, but she didn't care. When Angie set her mind to something there was no stopping her. Did she know her time with us was growing short? I'm not sure, but my guess is that Angie realized how precious her time was far before the '93 shopping season...

There was a blue envelope attached to the package. Inside the envelope was a card. On the front of the card was a penguin wearing a sweater sitting in a chair near a fireplace. It said:

"There is only one thing better than having a brother like you...."

On the inside it said:

"A RICH BROTHER! Merry Christmas!" 

There was another penguin dancing around all this money exploding out a of a Christmas stocking while the "sweater penguin" looked on with a smile. Tucked into this card was a crisp, clean hundred dollar bill.

"I bought the card and put her money in it. Angie had been saving that for something special. I think she meant you." Mom said with a wink and smile, both of us knowing it was probably for something girly and lame instead of her stinky brother. 

My eyes welled up with tears as I tore open the wrapped present to find "Garfield's Fifth Treasury" in my hands. It was collection of the lasagna-eating, Odie-beating cat's Sunday comic strips from the previous year. I was never a big reader, but I loved the comics. I loved the drawings and I loved to laugh. The Garfield comic strip had my sense of humor and I'd laugh out loud reading those comics for hours on end. Angie remembered that. 

As much as we were fighting during that "teenage sibling" part of our lives, she still took the time to show me she loved me. Maybe she knew that I would need more laughter and humor to survive. How right she was. I read that book every night for months before I went to sleep just to have a piece of Angie to hold on to. While this is a somewhat sad memory, it's also proof that Angie will always be here for me when I need her the most. And that is a WONDERFUL Christmas memory. 

You are missed, sister. Say hi to Dad, our Grandmas and Grandpas and the rest. Oh...and if you could...help hold me up right now. This year has been harder than others.

Peaceful Things and Happy Holidays,

Josh

Thursday, December 13, 2012

The Joshland Unfiltered Podcast: Episode 3 - Music, Musicians and Cystic Fibrosis: A "Breathe" Reunion

December's Joshland Unfiltered Podcast is up available for your listening pleasure! It's a "Breathe" Reunion with Rose Logue and Tess Dunn!



This podcast is the FIRST TIME the three of us have ever had an actual conversation together. That may sound strange, but you have to remember that we were flown in on different, barely overlapping dates that magical weekend in Seattle in 2009. Since then, we've all had our hand full with other projects, but have managed to keep track of one another. These two are like sisters to me and it's fate that this podcast debuts so close to Angie's "special day" when I need some sisterly love the most. I look forward to growing the eternal bond we have and getting know both Rose and Tess as the beautiful people they are.  

HUGE SHOUT OUT to Timmy G for editing this so quickly and being the straw that stirs the Joshland Podcast beverage! Also, love and peace to Matt's friends and family. He and Angie are loved and missed now and always.

In this podcast, We talk about the "Breathe Song Event", the enigma that is Matt Scales, Music and Cystic Fibrosis, their newest albums—"In Full Bloom" and "Honesty Box"—and what went into creating them. Plus, it wouldn't be a Joshland Podcast with a lot of silliness and laughter.

Download their albums on iTunes or find out how to purchase your own autographed copy of each of their albums for the best stocking stuffers in the universe!

Here are the links to the UK charity that Matt's family started in his honor and of course the AMAZING Breathe Song Event that features all of us including Matt.

Matt Scales Music Fund: 
http://www.mattscalesmusicfund.co.uk/matt-scales-music-fund.htm

The "Breathe Song Event": http://www.cfvoice.com/info/breathe/index.jsp


Download Rose and Tess' albums on iTunes or find out how to purchase your own autographed copy of each of their albums for the best stocking stuffers in the universe!

Check it out on our Podcast Player and subscribe to us on iTunes so you can download all the awesome shnizz! You're welcome. *ding*

Don't forget to:


Like our Facebook Fanpage



Peaceful and Podcasting Things,

Josh

Friday, December 7, 2012

Santa's Assistants

As I've blogged before, December has never been the best month for me. Honestly, I'd just assume skip over December all together. That way, I wouldn't have to stew in my grinchitized state until the New Year arrived and resolve to lapse on my resolutions like the rest of the population. At one point, I got to be so bah-humbuggish that my mother asked me if I had ANY good memories of Christmas. I told her I did, but the bad memories were so huge that they overtook the good memories in my mind for the time being. I wasn't mad at anyone, it's just how I felt about Christmas.

In order to avoid those angry feelings again (or at least lessen them), I intend to write a few good Christmas memories during December. So, without further delay,  here's "Navidad Historia NĂºmero Uno":
……

One Christmas Eve, once we got home from our a traditional spaghetti dinner at Grandma Miller's house, we put out "angel cookies" and a birthday card for Jesus, "Santa Cookies" and carrots for Santa and his reindeer and tenderly placed our letters to Santa in our stocking where we knew he wouldn't miss them.

Like any other child worth their salt on Christmas Eve, we delayed our bedtime for as long as humanly possible. Extended bedtime stories, bathroom breaks, extra prayers and giggly pretending to sleep in the hopes that we'd get a glimpse of the chubby fella with the beard full of cookie crumbs. And then the light threats came:

"If you don't go to sleep Santa won't come, remember?" Mom said with a firm and factual tone.

I looked at my mother like she'd farted in church and thought to myself "Crap, that's right! He's got that sixth sense thing that only moms, animals and the Tooth Fairy have. FINE! I'll go to sleep!" And off to sleep I went, dreaming of…well…I dunno…Stuff little kids dream of. 

I awoke awhile later to a strange rustling coming from the living room. It scared the @#$% out of me until I realized it was probably Santa...which, when you think about it, is really messed up. Only on Christmas Eve do we feel like it's okay to let a weird old man in furry pajamas into our home. Any other day and it'd be a "stun gun and call the cops" type of situation. With that in mind, I mustered up the guts to peek around the corner, my plastic moulded triceratops held tightly in my grasp just in case it wasn't Santa. I'd used the triceratops on my sister a few days earlier, so I knew it could cause damage to a human if necessary. 

Sure enough, it wasn't Santa…It was my Mom and Dad. 

They must have heard the noise before me, so they'd come to check on the situation. There was Dad, examining what Santa brought me: A Castle GraySkull Playset and an Attack-Trak assault vehicle for my He-Man collection. He was pacing around it, making sure it was put together just right. Then he put fresh batteries in the Attack Trak…something Santa must have overlooked in his haste to stay on schedule. I'm sure Dad inspected Angie's toys too, but I couldn't be bothered to pay attention to that stuff. Girl toys were dumb. I'm sure Santa got her something good, though. 


I saw Mom taking a bite from one of the left over cookies Santa had half eaten. She knew Santa was probably full of cookies by the end of the night and she didn't want us to be disappointed. 

(Joshland Note: I've often wondered: Is Santa diabetic or do you think he's magically immune to insulin dependency?)

While I was watching my parents, I realized they were helping Santa do his job the best he could. It's something that I imagined lots of other parents and loved ones did that night too, making Christmas morning perfect for the kids in their family. A warm fuzzy feeling filled my heart as I ran back to my bed, giddy with anticipation for the butt crack of dawn when I could play with my toys and spend time with my family. The moment the sun shone through my window later that Christmas morning, I leapt out of bed, fell face first on the floor, cried for a minute and then sucked it up so I could head to the living room. With tears of pain and joy on my face, I opened the drawbridge of Castle Grayskull pushing my well-worn He-Man action figure through the door and into my imagination.

Angie joined me a short time later to play with her whatchamacallit girly toy, followed by my sloth-like parents. They were smiling ear to ear, Mom clinching her coffee and Dad nodding off in the corner of the couch. They looked exhausted as if they'd been working all night to prepare some kind of big to-do, but I knew better. I knew they helped a little bit and I was grateful, but Santa did all the work and Jesus kept him safe. Both working together to share the spirit of Christmas. We sang "Happy Birthday" to Jesus, had pancakes for breakfast,  and spent time together as a family giving lots of hugs and kisses and being thankful for everything that we had in our lives.
……

Little did I know how different our lives would become a few years later. Once I started writing this story, I was amazed at how vividly everything popped into my head and how precious that memory is to me.

As an adult who participates in both the religious meaning of Christmas and the traditions of Santa Claus, I can tell you they've influenced who I am. For every "Santa Claus is Comin' To Town" there was a "Hark! The Herald Angels Sing". For every Christmas cookie there was a prayer. For every stocking on the fireplace there were statues of wise men bearing gifts and a little baby in a manger. Both are people who we cannot see, but do things with great love in their hearts. God represents love, forgiveness, compassion and acceptance...things I believe in to my very core. Santa Claus is a wonderful example of generosity and giving without the need for reciprocation or acknowledgement…again, things I believe in to my very core. 

Whether you're religious or not, the meaning Christmas is always within your power. It is love, generosity and goodwill to all. How can that be wrong? 

Peaceful Things,

Josh

P.S. - Speaking of the spirit of season…

There's a 9 year old little boy named Dalton DIngus in Kentucky that needs a little extra love this Christmas. He's been sent home from the hospital early this year because he's in the end stages of his life with cystic fibrosis. His Christmas wish is to get a ton of Christmas cards. His friends and family want to make his dream come true and he's currently at 15,000+. It'll take a moment of your day to make this little guy smile forever. Here's the address, the rest is up to you. Send your amazing and happy cards to: 

Dalton Dingus HC 

62 Box 1249 
Salyersville, KY 41465

For those of you questioning if it's a hoax, it's not. He's been on Fox news in Kentucky and the local fire department shared a picture with him on their Facebook page. Besides the fact that it's a flippin' card and you're out a few bucks, a little creativity and a stamp. I think it's worth the risk.


Tuesday, November 20, 2012

Do I GET Thankful?

The spirit of the holiday season moves many to give thanks for what they have and I am no different. I give thanks for the greatness in my life and the gifts that I've been blessed with. But do I actually GET thanks? I don't mean receiving thanks or feeling entitled to accolades either because that's wrong. We should do good things for no other reason than because it's the right thing to do. But it's more than that.What I mean is...

Do I really understand what it is to be thankful?
-------
• The other night I listened to a man bear his soul about his addiction and the losses he experienced because of his poor choices. I couldn't completely relate to him, but I definitely understood how that could've been me with one or two different choices. When I was younger, my heart and mind were in a frightening place filled with depression and anger. As a matter of fact, I dipped my toe in that pool of darkness and I could've easily walked a similar path to that brave man standing before me sharing his struggles with strangers. I understand how blessed I am to have made the right choices.

• I saw a man walking down the street, a three foot steel pole tapping intermittently at the space around him, warning him of any impending danger ahead. A telephone pole. A newspaper kiosk. A fire hydrant. A curb that lead to the street filled with drivers distracted by the radio or texting to say they'll be 5 minutes late instead of paying attention to the road. I understand that my sight is a gift. Every time I head into the infusion center at clinic and connect to that yellow bag of vitamins, I'm thankful that I'll be able to see my goddaughter's smiling face, my wife's beautiful eyes, my mother's charming smile or both of my best friend's heads thrown back in a fit of laughter over something their sons did that day. There's so much more I don't have the time or the space on this blog to mention. I get to SEE that for at least another week. 

• People call Facebook, Twitter and other social media time wasters that have no productive or positive aspects in our daily lives. I beg to differ. I have over a thousand friends on Facebook, many that I interact with every day and even more that read every ridiculous word I have to say. Do I have examples of my stupidity? Sure...here's one:

"On my bag of chips it says "enlarged to show texture." Today, I'm thankful that there are so many things that AREN'T enlarged to show texture. 

P.S. - I said "That's what she said." out loud to myself and laughed a lot. I need to get out more."


Or how about this status?...

"
Goodbye Hostess. 

I'll miss the spongy substances that you called baked goods and remind me of my childhood. The way that Wonder Bread would return to it's original form even after I squished it in my hand. The way you inadvertently planted the seed for the erotic cake industry by using a drawing of a Twinkie mascot wearing a cowboy hat, bandana, boots and nothing else while twirling a lasso.

Th
ere's a Hostess store a block away from my house. Today I'll buy and eat one last pack of TRUE Hostess Twinkies, sacrificing every vital organ in my body to process a "product" that has more preservatives and chemicals in it than Keith Richards of the Rollings Stones.

I presume that's how Keith is still alive...a diet of Twinkies that absorbs all the drugs."


You could read those statuses and think how lewd I am or how inappropriate those thoughts might be, but there's a method to my madness. First of all, I write those frivolous and inane comments because it makes me laugh and keeps me sane. But...more importantly, I'm exposed to so much sadness and anger on Facebook. Children who are sick, people who've lost their job or hate where they work, but have no choice but to keep punching in and out for their families and themselves. People who are unhappy in their lives. I mean, my god, someone dies on my Facebook page at least once a week from a myriad of struggles. And no, that's not an exaggeration. People are scared out there and they need a little levity to ease their hearts. I understand my role. If people read the stupid things that spew out of my mind or that happen to me on a almost daily basis and it makes them chuckle, then I'm doing something right. I understand how important laughter is and I give it freely to anyone who needs it. I'm not always funny, but I try to be true to myself.

• There are people in the world who hold on to anger far longer than they need to. It consumes their thoughts and impacts their present and future relationships...so much so that it stops them from achieving a truly peaceful existence. I understand that I am one of those people, but I've gotten so much better over the last few years because I've opened myself up to others. I'm no saint, that's for damn sure, but because of the people I've met from across the world and in my own community, I'm  more peaceful than I ever have been. I understand that the world is so much bigger than me and that no one can hurt me forever if I don't let them. There's no winning and losing too important. There's no blame game too intense. There's only love and peace if I let it in and IF I TRULY GET WHAT IT IS TO BE THANKFUL.

-------

On Thanksgiving and everyday, I challenge you to do more than just give thanks. To do more than just write it on your Facebook page, on your blog or say it aloud in front of others. I challenge you...like I challenge myself...to wake up and look around the place you call home. To examine the relationships you cherish and the experiences you've had and UNDERSTAND how quickly it could be gone. How quickly YOU or SOMEONE YOU LOVE could be gone from this earth. 

I challenge us all to GET THANKFUL so we can all GIVE THANKS far grander than we ever  have. 

Peaceful Things and Lots of Thankful Love To Everyone Always,

Josh

Tuesday, November 13, 2012

Joshland Unfiltered Podcast: Episode 2 - Transitioning From Pediatric To Adult CF Care Teams


Well...it's here! The first REAL episode with our guest panelists, Emily and Kelsey as well as the music of CF rapper Bobby "B.Fos" Foster is uploaded for your listening pleasure. I'll let the episode about transitioning from the pediatric to the adult CF care team speak for itself. You can listen to it here, but it would really help if you subscribe to us on iTunes as well.





I also want to make sure you go to the Joshland Podcast here on Welcome to Joshland and consider donating a few bucks to purchase headphones for our guests. Listen to the podcast or read this link to see why...

ABOUT THE JOSHLAND PODCAST

Now...I wanted to talk for a moment about taping a podcast...

I give Emily, Kelsey and every future podcast guest a ton of credit for being on the show. Sitting in front of a microphone and sharing your thoughts isn't easy because when you're on a recorded podcast or a radio show, what you say is out there to be heard and critiqued forever. They're wonderful people and I'm proud to have them as guests on our first podcast. I applaud their bravery and honesty, therefore, I must be brave too. Here it goes...

When I speak in front of an audience, I have a rehearsed and well crafted speech. I'm never nervous in front of people and I think that's because it's a gift I've been given. It's something I was meant to do. Share my story and support others with my words. Not to sound arrogant, but when it comes to public speaking...I'm damn good at what I do.

A podcast is a different animal.

When anyone is asked a question on the spot or they're under a little pressure to come up with the right words, they use what are called "filler words"—umms, aaaahs, and ya knows—while they're trying to convey their thoughts. Because of my cerebral palsy I do this all the time...pressure or not. I tend to talk my thought process out loud and my true thoughts and or message gets discombobulated through my verbal vomit. I know I'm doing it while I'm doing it, but it's really hard to control. Sometimes I cry because I know what I want to say in my head, but it doesn't come out that way at all. Then the CF lung issues kick in and I sound like a hyperventilating imbecile.

That's why I waffled over whether or not to start this project. I'm not afraid to be honest and say what I think when needed because nothing I say is ever intentionally malicious or hurtful, but as I said before...this is out there forever. I can change what I say in a blog post, I can craft a response on Facebook or in a chat room, but not on a podcast. Would it hurt me as a public speaker? Would I say something that might ruffle some feathers? Would I say something that might upset parents who have kids that love Moganko? All because I can't control my words?

Then I thought about it a little more and I decided I can't worry about what others think of me. I have to be myself. Thanks to my friend and producer, Tim Grossklaus, I have the opportunity to give people a voice that haven't had the opportunity to share their story. I have the opportunity to grow as a person and face my challenge of cerebral palsy head on. To listen to Tim and learn patience, how to slow down and speak clearly to my audience and still be the fun-loving guy people expect me to be. We really are having a good time when we're recording. You can't fake laughter and fun and I hope that comes across in each episode. Thank you, Tim, for the opportunity.

I hope you'll tune in each and every podcast to learn about these people, their life with CF, their life beyond CF and to listen to me turn those umms and aaahs into beautifully crafted and conveyed thoughts over the coming months and hopefully years of this podcast. Beating CF and CP at the same time. Sounds good to me. Literally.

Don't forget to:


Like our Facebook Fanpage



Peaceful Things,

Josh

Wednesday, November 7, 2012

"Would You Save Me?"

I'm re-posting this blogpost that I wrote on August 17, 2010  because I believe, now more than ever, we must be good to one another despite our differences. Because guess what? The world is going to keep turning no matter what happens, so we need to figure out how to live in peace. Please...respect each other and our right to exist.  Love, Josh ~ 11/7/2012

What if the ground trembled and the earth opened up, sending everything down into a ravine of darkness, hate, and fear? What if you saw me hanging from my fingertips off the edge of that ravine? Would you save me?

What if - not five minutes beforehand - I told you something about me.....
What if I told you that I was a (Insert race, religious/non-religious belief, socio-economic class, sexual orientation, etc...here.) person? What if I told you that I don't agree with (Insert race, religious/non-religious belief, socio-economic class, sexual orientation, etc...here.) people? What if the thing I told you was against every moral fiber in your being? Would you still save me?

My Blogger Profile reads:

"I'm a young man who has seen so much and so little that I decided to record the events of my life - big and small. The stories in this blog are honest, true, and sometimes graphic in language and events. There is not a story posted on this blog that is intentionally malicious or hurtful. Please keep in mind that while I may refer to my Christian beliefs from time to time, I have learned so much from so many fantastic people with different beliefs than my own and I cherish those people and experiences."

I believe in the power of being good to others regardless of their beliefs, the way they live their lives, and their opinions on the "taboo" topics. As long as you are caring, helpful, respectful, and do not spread hate in the world, then you are good to go in my book.

I'm honored to have people from all different walks of life reading my stories. In my heart, I think it means maybe we ARE willing take the time to listen to each other. Even if we aren't convinced by someone else's opinion, MAYBE we can respectfully agree to disagree while learning a little bit ourselves and those around us.

Could we even develop a friendship despite those differences? GASP! How bizarre!

The gift of listening is priceless. Unfortunately, few give that gift unconditionally. But based on all the diversity of my readers, I still have hope. Call me an optimistic realist, but I just want the world to figure it out and get along. I know it's a long shot, but forgive me...I'm one of those "Shiny, Happy, People" that REM was singing about.

Because there is one thing that we all have in common regardless of our personal beliefs:

Our humanity.

So I ask you...

What if the ground trembled and the earth opened up, sending everything down into a ravine of darkness, hate, and fear? What if you saw me hanging from my fingertips off the edge of that ravine? Would you save me? What if - not five minutes beforehand - I told you something about me that was against every moral fiber in your being? Would you still save me?

Because I would save you.

But what do I know? I'm just a nerd who hangs around with a puppet.

Peaceful Things and LOTS of love,

Josh

Saturday, November 3, 2012

My Appearance On Eric Marten's CF Pioneers Podcast

In all the chaos over the last few weeks, I haven't had a chance to post my most recent podcast appearance. I was on the CF Pioneers Podcast with host and fellow member of the CF Community, Eric Marten. We ended up talking for about 2.5 hours and covered a ton of different topics from Fathers of CF kids, suffering in silence with CF, depression and more. I encourage you to listen to not only my podcast(s) with Eric, but his previous podcasts as well. Here's why:

Eric's podcast has a very raw and honest feel to it. He asks thoughtful and interesting questions that travel into topics many would try to avoid. The truth is that CF is a hard and individual disease. People do their best to survive and thrive through it. Sometimes that means navigating over some bumps in the road by making personal choices others might not agree with. Promoting CF Awareness from all aspects and opinions is something I'm very interested in. I believe in supporting anyone who has a honest, powerful and positive message even if it might not be all "duckies and bunnies". CF is all about that gray area. The highs and lows that make up the unique people in the CF Community. It's a big reason I agreed to be on the podcast. Eric is using his talents to provide yet another avenue to the CF Community to get our story out there. I'm happy to be a part of that.  

I hope to take aspects of the CF Pioneers Podcast and incorporate them into the Joshland Unfiltered Podcast. I also hope that Eric with accept my invitation to come visit Joshland with Timmy G and I in the future. We just have to find the right topic.


FYI - Our conversation was so long Eric had to split it up into two parts. I'm sure he'll post the second part soon and I'll link to it on this blog post. It just goes to show you...if you put a mic in front of me, then I'll talk until the cows come home. Thanks for having me on, Eric. It was an honor, my friend.

Here's Part One:

Josh Mogren Part One - CF Pioneers Podcast

Peaceful Things,

Josh

Thursday, October 4, 2012

Introducing the Joshland Unfiltered Podcast!




As if I needed another project...

The Joshland Unfiltered Podcast launches today! It's a CF podcast that gets inside the heads of the CF Community to talk about all kinds of topics with respect and honesty. 

Hosted by little old me and "Normie Producer" Tim Grossklaus—AKA "Timmy G", each episode will feature guest panelists with varying viewpoints and will include topics such as:

• The 3 Foot Rule
• The ups and downs of Social Media
• CF Couples
• CF Parents
• Spouses of the CF Community
• Myths and Reality of Transplant and Organ Donation
• Transitioning from a Pediatrician to an Adult Doctor
• Relationships and Friendships
• Gender Roles
• And many, many more

We'll also have different reoccurring segments each episode to bring a little laughter and lighten the mood after some serious discussions.


Using social media, listeners can interact with our podcast while we're taping an episode, continue the respectful discussion after listening to episodes and submit topics and panelists for future episodes. Send us an email, Like our Facebook Fanpage and follow us on Twitter to be a part of your...yes...YOUR podcast! This podcast will only work with your help.

Click here to listen to and subscribe to us on iTunes

Click here to listen to us on our Facebook Fanpage

Like our Facebook Fanpage

Follow us on Twitter




Please don't worry. Moganko won't be a part of this podcast. He'll always be a kid-friendly character to teach wonderful lessons to families. I just needed an adult outlet like this blog to share my adult side too. I swear I have one!

Peaceful and Podcasting Things,

Josh

Tuesday, October 2, 2012

Why Me?



"Why me?"

I hear that a lot when people feel they're at their darkest hour. It's a legitimate question. Yet, for every person that says "Why me?", I can find ten more people who probably have a better reason to ask that question on this particular day. For instance...

I couldn't breathe very well today and I started to feel sorry for myself. Then I logged onto Twitbook and saw a post from a friend who's waiting for a lung transplant and is losing the ability to focus on things for more than five minutes at a time thanks to their lack of oxygen.

Humbled back to earth, I took a moment to appreciate my frustrating but minimal struggle for breath, then hopped in my car to head to a meeting with a former teacher. While I was driving, I coughed up something akin to "Slimer" from the Ghostbusters and I naively snapped back into "Why me?" mode.

Internally wallowing in my self-pity, I sat down to talk with my wonderful teacher and mentor who I hadn't seen in almost two years. During our visit she told me about one of her former students—10 years my junior—who just had a tracheostomy (a tube surgically placed in the windpipe that gets hooked to a ventilator) because they've lost the ability to breathe independently thanks to Duchenne-type Muscular Dystrophy. My teacher said this person was still pretty positive despite all of their struggles.

Even though I still felt justified to say "Why me?" today, after I heard that story I felt pretty foolish about overly dwelling on my cough and my trouble breathing.

Life is hard sometimes and we all have "Why me?" moments. 99% of the time they're justifiable reasons and we have every right to feel the way we feel...for a moment. And I did. Then I thought of my friend waiting for lungs and I thought of this young person with DMD who's still fighting even after all the bullshit life has thrown their way.

Then I looked in the mirror and said:

 "Say 'Why Me?', Josh. I dare you."

Peaceful and Powerful Things,

Josh

Monday, September 24, 2012

I'll Take A Window Seat

"I was told to get a new seat assignment from you, sir." I politely explained to the airline worker who never glanced up, clicking furiously on the keyboard and handing me a new boarding pass with a window seat.

"Umm...excuse me, sir..." I reluctantly asked. "I forgot to mention that I'd prefer an aisle seat. Could we change it?"

"Sorry Mr. Mogren. I'm out of isle seats."

I bit my lip and stormed away like a petulant child. I hate the window seat. I get claustrophobic and I always have to use the restroom multiple times during the flight because "tummy no likey fly time". Now I'm going to be uncomfortable for 3 hours and I'm going to make the passenger next to me get up early and often for 3 hours. The same person who had the presence of mind to request an isle seat sooner than I did. Blargh.

I was at the airport about 2 hours early for my flight out of Austin. That may seem excessive to some, but I hate the act of traveling and I've have had far too many nearly missed flights thanks to airport security, gate changes and my worn out body to risk anymore mishaps. It also gave me time to reflect on how traveling to and from an event is a journey in and of itself.


You see, I'm only "Josh from Joshland" for one day of my entire trip. It could be in Kansas City as the keynote speaker for CF Education Day at Children's Mercy Hospital,where I was warmly received with hugs and appreciation. Or maybe it's CF Family Education Day in Austin, TX at Dell's Children's Hospital where I'm proud to say that I received a standing ovation from the adult crowd and lots of giggles from the kids. During the day, I'm connecting with strangers and sharing my perspectives on living my life with cystic fibrosis. I'll cherish these experiences forever and I'm grateful for the opportunity to share my story and learn from everyone I meet as I try to be present for the gifts life gives me everyday. For instance...

I sat alone eating my dinner, exhausted from traveling. My chest was rattling with mucus that violently made it's appearance during the evening dinner rush. Red faced and shaking, I thought about my mother. How she used to speak locally for so many years to raise CF awareness at a time when NO ONE heard about CF and could've care less about any disease unless it was featured in a telethon or in a commercial. Everyone stared at me—concerned for my well-being, but too shy to ask if I was alright— and I thought about my wife. How encouraging she's been to me through this entire process of traveling, speaking, poorly puppeteering, and being the wife of both "Josh" and "CF Josh" while I try to figure out who the @#$% I am.

I sat alone in my hotel room later on that night, listening to the rev of the air conditioner abruptly click on and off and I thought of how lucky I am. I know there are others with CF who want to be speaking like I am, but they don't know where to get started, they haven't been given an opportunity to or they simply aren't physically able to right now. What makes my story any better than theirs? Nothing. It's just a different path. All I tell them is keep working hard and putting yourself out there. Be uniquely you and the rest will fall into place...

I propped my feet on my upright HFCC treatment bag and waited at my gate as a bird that somehow made it into the building shot past my head and landed on the floor near me. It anxiously hopped along and then disappeared into the shadows. I laughed out loud thinking how all the kids I'd seen during my travels would've laughed at the way I jumped when the bird scared me half to death. I'm sure it would've been the same way they laughed when I danced around, played games with them and made silly faces in pictures we took with three feet between us. They saw that CF, though scary, could still be silly sometimes too.

The flight attendant's voice pierced the intercom and my thoughts. "I'm sorry for the delay y'all. As soon as I hear from the crew, we'll begin boarding."

To pass the time and calm my soul, I started listening to the homilies of one of my mentor's—Fr. Greg Tolaas. He was a gifted speaker and his message almost always revolved around love, being present, and being peaceful. He also happened to have CF, but rarely made mention of it unless it was pertinent to the conversation or a tool to deliver a greater message to all within earshot. I happened to click on one of his best homilies. In it, he said:

"A breath has not fully been breathed unless you have been grateful for it."

Those words resonated in my left ear while my right was listening for updates on our flight. And then...it happened again:

"I'm sorry again, y'all." the flight attendant conveyed with a weary drawl. "This flight has been grounded until further notice. Please get in line to be rebooked so you may reach your destination."

Like a herd of elephants, the passengers on my flight trampled and pushed their way in line just to be sent off in different directions. It reminded me of a really lame joke:

 "Why do elephants have trunks? Where else would they pack their luggage?"
Being the very small and scrawny elephant that I am, I had very little trunk space to put my luggage in, so I ended up at the back of the line.

I listened to the passengers bitch and moan about the flight being cancelled and the airline being the spawn of the devil. I almost got caught up in it myself, until Fr. Greg's words got me to thinking...

Life is full of simple complexities. The act of breathing is involuntary, yet our bodies must do hundreds, maybe thousands of things to process that one breath. Carbon dioxide into oxygen that fliters through the lungs, and keeps our blood flowing so we can move our extremities and react to the electrical impulses that we send from our brains. Brains and bodies that keep our world going, fix our planes when they are grounded and allow me to speak at these events from time to time.


I know I say that all the time, but it truly is an honor it is to speak at these different events across the country. I treat each of them as if it'll be my last, not because I'm gonna kick off and die, but because maybe I'm just a passing fad and my sudden notoriety will fade away. One could look at this point of view as a pessimistic, but I prefer to think of it as a viewpoint that keeps me humble and makes me thankful for what I've given. In this "hurry up" world, we rarely take the time appreciate those complexities and gifts. The world—via broken airplane—had given me the time to do that for many aspects of my life. That sounds a little nuts as I write it, but it's how I felt then and how I feel now. 

By the time I came out of my trance, the flight attendant announced that the delayed flight was ready for take off. Everything was all "duckies and bunnies" again, until I sat down and started a casual conversation with a different flight attendant:

"So what was wrong with the plane that delayed us for so long?" I asked.

"I don't want to be on this plane!" she emphatically replied. "It was struck by lightning in June and has been fixed 4 times since then. It's never working. I.DON'T.FEEL.SAFE."

"So....things are good at the workplace right now, huh?" I awkwardly chuckled.

She let out an ill-timed belly laugh and headed toward the front of the plane. Surprisingly, I didn't freak out. I just picked up my cellphone and called my wife.

"Honey, the flight attendant told me she doesn't feel safe on the plane, so just in case we don't make it back...I love you."

Carly, subdued as ever, said. "Why would she say that? That's dumb. I love you and I'll see you in three hours."

Before I could make anymore calls, we were told to store our electronics and prepare for take off. As I stored my baggage in the overhead, my mind was racing. All of my big problems disappeared. I thought of my family and my friends. Most of all, I thought that I've had a very good life with only a few regrets. It all made me feel surprisingly peaceful.

The plane was half empty because so many passengers had been rebooked on other flights, so I had my pick of the seats. This time I chose the window seat. For simple complexities sake. For most of the three hour flight, I was looking out the window and feeling...calm. It was nice. I wanted it to happen more often. I wish I could figure out how to make it so. I'll keep working on it.

Clearly, I'm home and I'm safe. I'm lucky and I'm loved.

I hope you are too.

Peaceful Things,

Josh


Monday, August 27, 2012

"It's Just A Number!": My Thoughts on Sharing PFT Numbers

Here I go getting myself into trouble again, but this has been on my mind for a while. This is not a shot at people who share their PFT numbers. If you choose to share your PFTs with others publicly, that's great. If you like to know other's PFT numbers are because it helps motivate you to be your best, then by all means, please continue to do so. All I want to do is share an opinion that I have and that I know others have too. Love and respect to all who read this.
As soon as you saw the title of this blog post, I know you got a little curious. And now, as you look at the picture to the left, you're asking yourself two questions:

1. What are Josh's Pulmonary Function Test (PFT) numbers?

2. Why aren't they posted as a part of the photo?


Both are valid questions, so let me start answering them by telling you a story I've only referred to in previous blog posts:
______

It was 1991. I was a "tweenager" at the time and the routine was always the same. If my sister, Angie, happened to be in the hospital for one of her extended stays, then my mom and I would go visit her as soon as my CF clinic appointment was done. We would stroll into her room and I'd have a big smile on my face, so proud that my numbers were off the charts and that my health was at it's peak, despite being a teenage fool and skipping many a med and treatment.

Angie's first words to me were the same at every visit, spoken out of concern and curiosity: "Hi (insert sisterly insult here), how was your appointment and what were your PFT numbers?"

Without a second thought, I trumpeted my numbers to her with such a callous tone as if they were no big deal and took little effort to accomplish. Not because I meant it that way, but because at the time it was the truth and I took it for granted. Normally, Angie would say something encouraging to me, giving me a high-five and a big smile. This time she was silent, but she managed to force a smile to her lips. I thought nothing of it as I maliciously changed the channel on Angie's hospital TV from "Oprah" to "Chip n Dale's Rescue Rangers". Our visits continued on their normal path without another awkward pause, save the needless argument about what to watch on the boob tube.

Later on that evening, many hours after we came home, I could hear my mother's voice as one side of a conversation trying to soothe the caller on the other end of the line. She was talking to my sister.


....

"I know it's not fair. You should be as healthy as he is too. I don't know why that's not the case."

....

"Don't you worry about his numbers. You're doing a great job taking care of yourself. I'm so proud of you and so is your brother."

....

"Okay. I'll be there as soon as I can tomorrow. I love you, Totsie."


I broke my sister's heart....AGAIN.

The next time I had a clinic appointment, Angie was thankfully at home, curled up on the couch watching a movie. When I walked in the door, she asked me that same question: "Hi (insert sisterly insult here), how was your appointment and what were your numbers?"

"They were good." I replied. "How are you feeling?"

It caught her a little off guard. I think it was the first time I ever asked her how she was of my own accord. Angie smiled and told me a little bit about her day and how she was feeling. The subject of my PFT numbers never came up again in that conversation or at any other time during the rest of our relationship.

_____

I think of that story every time I do a pulmonary function test. I look back at how different our lives were. How she had to fight for every breath and I had two decades where I was, for all intents and purposes, just the sibling of someone with CF. Yes, I had my CF issues, but they were measly in comparison to my sister. I don't have guilt over being healthy. My guilt comes from the fact that Angie never got that same breaks that I did. How every success I ever had was bittersweet for her because she saw what she was missing out on. She was never ever mad at me and she was always proud of me, but she just wanted to be healthy too.

With the CF Community developing this huge online presence, I see this scenario happening again...every single day. There's this push to share our PFT numbers within the CF Community and I think it's ludicrous...borderline insulting. Here's why:

First of all, the Pulmonary Function Test and it's coinciding numbers exist as a medical guideline for you and your doctors so you can visualize what kind of shape your lungs are in. It's the foundation for how you create YOUR healthcare plan because (and I'm beating a dead horse again, but I don't care) CYSTIC FIBROSIS IS AN INDIVIDUAL DISEASE. And while the PFT is meant to be performed the same way and under the same criteria at every CF Clinic, I guarantee you that's not the case. If I performed a PFT at 10 different CF clinics the results would be different every single time. That's not a knock on any CF Center. That's just the truth.

Secondly,—maybe this is just my opinion, but— asking someone about their PFT numbers is (or should be) a CF social no-no. It's no different than asking someone who's heavyset or rail thin how much they weigh or asking a potential date what their measurements are, how well endowed they are, or how much they make before you ask them out. This shouldn't be a necessary qualification toward acceptance. No one should have to feel the sadness Angie felt hearing my seemingly effortless numbers when she was trying so hard with limited success. No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy.

What's that? You think it doesn't cause people pain and sadness? That I'm overreacting? Tell that to the parents I talk to who feel like they're failing because their kids numbers aren't like "Johnny with CF" down the block. Tell that to the young men and women with CF who can't breathe sitting in the hospital doing four treatments a day and countless nebulizers. In every group I'm in on Facebook, in every CF chatroom I've ever been to, there's a discussion about PFT numbers, so the heartbreak and (sometimes the bitter anger and resentment) keeps happening.

Guess what, CF Community? We're not in some @#$#% competition with each other. We're in competition with Cystic Fibrosis and the b.s. that comes with it. The picture at the beginning of this post is an actual copy of my documented pulmonary function test during a portion of my life. I didn't put any of my numbers on it because, quite frankly, it's no one else's business and because my PFT numbers are irrelevant to how your should view your PFT numbers and your journey with CF.

What you should focus on is what those lines are doing. What you should ask me is:

"Josh, what did you do to get your PFTs to go up?"

"Josh, what happened that made your PFTs go down and what are you doing to correct that?"

Those are the key questions that need to be answered. That's the info that needs to be shared. We need to support and help each other through our journeys. Not compare, contrast and criticize one another.

I'll leave you with this....

Back in college when my buddies and I used to enjoy drinking an ice cold adult beverage or two, we'd often ask each other: "Hey, how many have you had?"

Before we could reply, our friend Jim would always say:

"It's
just a number."

We'd all laugh, order another round and promptly hide Jim's car keys.

Now, nearly a decade later, whenever someone asks me: "What's your lung function?" or "What's your stats?" or "What's your PFT score?" I answer: "What does it matter? It's just a number."

It's just a damn number.

Peaceful and Honest Things,

Josh

Wednesday, August 22, 2012

See You Later, "Gramma"

When I originally read this letter that I wrote to my grandma aloud, it was only intended to be heard by our family's ears. When I finished reading it, I was asked to read it again at her funeral. I was so honored to represent my cousins and I'm proud to let the whole world know how awesome it was to be one of her grandkids. Here's the letter with some pictures of us rowdy cousins...well, the ones I could find with as many of us as possible. Vincent and Kyle...you need to be in more pictures. :-D.....:

By default, I'm the eldest grandchild. I'm certainly not the best writer of the bunch, that distinction goes to Molly and you'll find out why during what I'm sure will be a lovingly crafted eulogy you'll hear later. That being said, I can hold my own when it comes to delivering a message…especially when the message needs to make it all the way to heaven. So Grandma, listen up! This is a letter I wrote to you on behalf of all of your grandkids.

Not only was Angie the first grandchild, but she was the first girl born in the Mogren family after a VERY LONG drought. It's fitting that your first shot at being a grandmother would start off on a different foot all together than your time as a mother. The next part of your amazing journey...

You wore many hats as a grandma and supported us in every aspect of our lives. You were an advocate of many causes, a cameo guest star on Bizzare Foods, an executive producer of a movie based on real events about terrorist bears on an airplane, a multi-performance attendee of every play and recital known to mankind, a front row cheerleader at hundreds of sporting events, a counselor of broken hearts, a healer of scraped knees, a booster of secondary education and you had an amazing lap where you told the best stories, both written and from memory. You were also the best candy sharin', soda purchasin', Christmas, Birthday and everyday spoilin', Minnesota Twins watchin', slot machine pullin', Florida visitin' , theme park takinest, meal feedinest, song singinest, bestest Grandma in the whole wide world.

But you were so much more.

You were sweet and wise. You were kind and generous. Grandma, you loved us so much and beamed whenever you talked about your grand babies. Plus, your heart was open to each and every person we ever brought over to your house, so you ended up having many more grandkids than just your special bunch. Those extra grandkids may not have been blood, but once they met you…they were yours forever.

The older grandkids got to experience something very special with you as adults. You, darling Grandma, were our friend. We asked you questions, we laughed and cried with you, we confided in you, and we got to know you as more than just our "bestest grandma". It breaks my heart that the younger grandkids won't be able to learn more from you and see first hand what a truly wonderful and brilliant woman you were and will always be. Don't worry, we'll do our best to share your spirit with them as they grow up.

Just last year, when my father passed away, I looked at you and asked why things happen the way they do. You looked back at me for a moment, paused your soap opera stories and said…"I don't know, Joshua. They just do and we just have to keep on living a good life."

So all of your grandkids—Josh, Molly, Andy, Chelsey, Jocelyn, Vincent, Corey, Kyle, Joe, Maggie, Katie, Alex, Carter, Macie, and your great grandkids Reese, Baby Addie and whomever else may come along—make you a promise here and now to keep living a good life while you cradle Angie in your arms as Grandpa, Steve, Gregory and the rest of our friends and family look on with a smile.

All of you watching over us from above.

Gramma, Grammy Grams, Gramma Mogs, Granny….You are loved and will be dearly missed until the day we meet again.

Love Forever,

Your Grandkids

Monday, August 6, 2012

Competing With Myself

I wouldn't call myself a competitive person in the traditional sense. Winning and losing has never meant much to me. Some of it comes from years of being picked last in activities as a child or from people assuming I can't play just because I have cerebral palsy, asthma and CF. I hate when people impose limitations on me without taking my opinion into account. I'm a free thinking, intelligent person who knows what my limitations are. Have enough respect for me to let me make that decision on my own.

My non competitive nature also comes from the examples I see from the ultra competitive people in my life. A lot of them are just jackasses who have no humility and no tact. There's a difference between being confident and cocky. A confident person is in the zone before they compete and then embraces their competitors the moment the competition ends. A confident person embraces a win with pride and humility and handles defeat with grace. A cocky person feels the need to rub their success in other people's faces. Or maybe they like to antagonize their competitors with their words and actions rather than deal with their own issues. The only positive thing that kind of attitude provides is the bulletin board material that will be used as motivation. So, in that vein, I say "Thank you, jackasses."

I used to compare myself to others all the time. Thoughts like "Why don't I have those things in my life? That person doesn't deserve it. How unfair!" would constantly run through my mind. I worried myself sick—literally and figuratively—thinking about what I couldn't do or what I didn't have. It was bitter time in my life that I look back on and shake my head in shame. Too often in the world we get angry at others achievements in life. The CF Community is no different. For every person that's inspired by a public figure for accomplishing a goal in the face of CF, there are detractors who lambaste them every step of the way. These detractors perceive it as a personal slap in the face or a sign weakness if someone is telling them how they can reach their goals and do great things. What they perceive may not be the reality...

More often then not, when a public figure shares their message or story, it's simply an example of what you can do when you set goals and work hard. Do some come off as the cocky jackasses I mentioned earlier? Yes, but most of the time I don't think it's done intentionally or maliciously. Regardless if we're talking about exercise, professional or personal achievements, they share their stories because they care about you and they want you to do the best you can with what you're given just like they have. Does that mean you have to run a race, have a baby or work 50 hours a week to be a successful person with CF? No. It means they want you to set YOUR OWN GOALS and achieve them. Sometimes I wonder if that's the message that gets lost in translation.

I received an email recently that said:

Dear Josh,

I hate CF and I feel like I'll never be able to do anything because of it. How do you stay so positive and how have you been able to do so many interesting things?

Sincerely,

Anonymous Person


I think my answer fits very well into this post, so I thought I'd answer publicly:

Despite what people think of me and my persona as a public figure in the CF Community , I am a HUGE WORRIER. I worry all the time about money, my health, my relationships and my future. The one thing that keeps me peaceful is that I always seem to survive whatever it is I'm worried about. Life has a way of keeping me going even if I end up with some lifelong scars. It sounds weird, but my track record of hardships has become my saving grace.

I think I stay positive because I try not to measure my success against other people. I try my best to understand why someone says or feels the way they feel and why they do what they do, but if I feel it's a negative, I eliminate it or them from my life. I don't have time to waste my energy on negativity. I ALWAYS cheer on my CF kindred spirits (whether I agree with them or not) who are living their dreams despite our illness, but I feel no pressure to be them or emulate them because that's THEIR LIFE. I see what they do and it inspires me to be they best Josh I can be. And that attitude has opened tons of doors for me.

So, I guess you could call me a self-competitor. I've worked hard to survive life and to achieve the goals I set for myself. Sometimes I fall short of those goals, but then I regroup and try again. I know there are somethings I'll never achieve, but as I've said before, I'd rather try and fail than fail to try. When those moments that hurt my heart pop up from time to time, I take a step back and count all the good things in my life.

A roof over my head.
Food on my table.
My family and my friends.
I have the medicine I need and the doctors to take care of me.

Everything else is insignificant.

Always remember: You're a unique and talented. You're loved and lovable. You'll find your place in the world. Be inspired by others, but believe in yourself. Those who inspire us can only give us incentive. The rest of the hard work is in our hands. Set realistic goals, believe in yourself and do your best to achieve them. After all, if you don't believe in yourself, then why should anyone else?

Peaceful Things and Lots of Powerful, Positive Energy,

Josh

Thursday, July 5, 2012

Wine, Roses & A Realization


A few Monday nights past, my wife and I swayed down the Embarcadero near Pier 33.

"Can I offer you folks a ride down to Market Street? You just missed the cable car and it's a great night for a ride." the young buck chattered, pedaling swiftly and going nowhere.



"Actually, we're really good. I've had a couple beers, so I can't feel my legs and feet right now. We may pay for it in the morning, but I think we're gonna hoof it." The cabbie bid us adieu and disappeared into the night, save his blinking red tail lights and high pitched bell that made me want ice cream in a weird Pavlovian way. I looked down at the sidewalk and began trying with all of my might not to break my mother's back on the cracks below me. After saving my mother from her unknown fate for several minutes, I looked up at my sweet wife and babbled:

"Sorry, sweetie. I know we should've taken that ride because we've been walking all day, but I wanted to walk with you tonight. I want this to be one of those nights we look back on when we're older and smile. Years from now, when my body won't let me walk anymore, I don't want to say 'I wish we would've walked that night in San Francisco.' So we're walking. And we're holding hands. And that's that." She rolled her eyes and kissed me. It was nice.

This state of euphoria was yet another realization that I am doing good things with my life. I'm making people happy. I'm sharing my CF story and my thoughts on life to help the CF Community in whatever way I can.

This particular trip was about two things. The first was being the guest speaker at the A Night of Wine and 65 Roses event benefiting the Northern California Chapter of the CF Foundation. I hope my words were one of the reasons the night was so successful. I did my best to speak with passion and honesty. I believe when someone speaks from their heart, the audience can feel that and the imperfections melt away. I try to be real because that's what CF is...real. It was a special evening for me and I have Helen, Amanda and the hard working staff at the Northern California Chapter of the CFF to thank for it. If you're in the area next summer, I highly suggest you make it there. Love to you all.


The second was about connection. I was a bit embarrassed by the wonderful reception we received the moment we arrived in Petaluma. Carly and I loved the time we spent with CF Families that we'd only seen in pictures. They went out of their way to make us feel the same way Moganko makes their children feel: Special. We also met up with a few friends (What up Rosie Posey, Leeners and Jess!) and strengthened our already strong relationships. I love each of them with all my heart. We made memories from this trip that will last a lifetime. The kind of moments that erase the "shoulda, coulda, wouldas" and turn them in to "dids". I'm truly a blessed man. It doesn't take a moonlit walk down the street in San Fran to realize that.

I wanted to post the entire speech, but it's 16 minutes and that made YouTube angry for some reason. So I posted a snippet of the speech instead.



Look for me as a guest speaker at CF Education Days in Missouri, Texas and Virginia in the upcoming months. I'm looking forward to many more experiences full of love, honesty and humor that I can cherish for the rest of my life. Thank you for everything in advance. My life makes my heart happy.

If you'd like to have me speak at your events, please email me at: welcometojoshland@gmail.com

Peaceful Things,

Josh

What'd You Think?

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Peaceful Things ~ Josh
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