Tuesday, December 21, 2010

The Reason For The Season

Joshland Note: After this post, I am taking blogging break for the holidays. My heart needs to heal as does my body. No worries, readers! I will be back - rejuvenated and ready to write again. I am lucky, I am living, I am loved. Nothing else matters.


"We just don't have anything nice." ~ A statement I overheard from a woman walking out of well known retail store with 2 BAGS WORTH of toys/electronics and loading them into her huge, brand new SUV on 12/2/10


Tis' the season, boys and girls. The season of love, friendship, giving, and... complaining about not having nice things?!?! Come on, lady! NO NICE THINGS? Really?

Nice is such a subjective term. One man's trash is another man's treasure, or so the saying goes. What I might think is wonderful, you might think is "quaint"and quickly turn your nose up at it. What you might call a "life or death" item, I might call a waste of time and money, which would force me to smash a Boston Creme pie - the one that I keep on me at all times in case of emergencies just like this - right in your face, knocking some sense into you.

Thankfully, I feel like I've surrounded myself with people that appreciate and have worked HARD to earn the extra little luxuries. They are thankful and do not complain very often. I can't blame you if you do forget. Appreciation is such a simple thing lose track of during the stressful holiday season. Fortunately, because of my positivity/paranoia...I will never forget.

My wife and I are very lucky. We have a roof over our heads, food on our table, and a place to rest until the morning comes. We have some nice things, but I actually have a guilt complex about it. I have "buyer's remorse" no matter how big or small the purchase is. I have no sense of entitlement to anything I have. Don't misunderstand me, I most certainly have complained about not having "extras" or saying "I want this" or "I need that". If I said otherwise, I'd be lying. But I guess I don't feel like I deserve a lot of the stuff I have.

My reasoning?

There are people that have struggled with life so much more than I probably ever will...my sister, for example. I have an unquenchable guilt about that. Sometimes I wish Angie and I could've switched places because I think she'd have done a better job with her life than I have with mine. That's maybe not the best thought process and certainly not logical/rational/forseeable, but you watch your sister die from the same disease you have and see how well you cope with it. It's been 17 years and I still struggle with how I could have been a better brother and how I'd give anything to still have her here telling me what to do.

I've also seen terrible, horrible, life changing things happen in an instant. In May of this year, a high school classmate of mine was assaulted. Someone hit him and he struck the back of his head on the sidewalk when he landed on the ground, causing him to suffer a traumatic brain injury. After months of fighting valiantly to live, his family and friends laid him to rest in early December. Peaceful thoughts to you, your family, and your friends, Adam. Both of these examples are the things of life I do not understand and never will.

I feel like I've been lucky. Many times in life it's better to be lucky than good because - as I've said more than a few times - "Life is what happens while we're making other plans." (Actually, I believe John Lennon originated that quote, but let's not squabble over words right now. I'm trying to make a point and be all wise 'n' stuff. Stay with me...)

INITIATING MY "NON-FICTIONAL RECURRING DREAM" RECALL SEQUENCE:

Sometimes (more often than I'd like to admit, really) I have vivid nightmares about the future. A time when we might lose our steady income or health insurance. I'd get really sick and we'd have to sell all of the stuff we've worked so hard for just to pay off our debts and not even come close to breaking even. A time where we'd live off of the kindness of others and move from house to house based on who'll tolerate us living with them the longest. Things would get so bad that we'd have to give up our dogs because we couldn't afford to take care of them anymore. Between bouts of sobbing, we'd work so hard to make sure they went to a loving family who would baby them as much as we do...or "did" in this case. I imagine my wife staying by my side, but I'd always feel guilty for putting her in this position. I know it could be her who gets sick (I certainly hope not!), but statistically, it will most likely be me (thank you CF) and that's the scenario that plays out in my nightmare. Other details weave in and out of this nightmare seamlessly, but essentially the end result is this:

We lose EVERYTHING and it is ALL MY FAULT!
Despite my best efforts, I am a bad person and a bad husband who can't even take care of himself, let alone his family.

A bed-quaking body shudder pops open my eyes where I lay, soaked in a pool of my sweat. My eyes sting from the salty beads that got stuck under my eyelids, proving it IS possible to cry in your sleep. I look to my right and there is my beautiful wife sleeping away, engulfed by a grey and blonde dog. To my blurry, stingy, eyes they look like a cute Muppet mutant. They are snoring that cartoon snore where one character whistles and the other two snort. (My wife does the whistling...you're welcome, sweetie. ;-)

I hop out of bed and snatch my semi-scruffy robe from it's hook in the bathroom, then head to the kitchen for some late night hot chocolate to calm my nerves. Reverting back to a childhood staple is one of the numerous ways I bring myself back to reality. The reality that we are going to be okay. That regardless of the paperwork, the medical forms, the fighting with insurance companies, and the inevitable future I've seen for myself far, far, down the road...I am okay. I am lucky. I need to remember that and treasure the tranquility of security because I am not entitled to it or any other things that come with it. No one is.

So I'll give the woman with the boatload of gifts the benefit of the doubt. She could have been having a bad day. Maybe she IS appreciative of her situation. Maybe it's a volunteer vehicle on a shopping spree for 'Toys for Tots'. MAYBE she's a volunteer who just lost her job and can't even afford to pay her heating bill this month, but is still helping others. I kind of doubt it, but I've been wrong before. LOTS OF TIMES. Either scenario - the quote at the beginning or the hypothesis I just stated above - makes me sad.

During this holiday season one or several of these things have happened or will inevitably happen to you:
  • You'll be so pissed off that you missed out on the one item you want so badly or that someone will give you the similar generic item without all the 'bells and whistles' you wanted. If you wanted actual bells and whistles, you'll get a trombone and use it as a hat rack for a year, consumed with anger every time you reach for your sombrero of choice.
  • Your Aunt Mildred will you gift you a shitty crocheted hat and mittens. Crocheted mittens and hats are normally great, but these things are just tragic looking. One ear flap will be longer than the other, the left glove will be missing a thumb, and they are a mix of "Pepto pink" and mucus green. You have to pretend to like them or your parent/significant other with disown you. Over the winter, you WILL see Aunt Mildred and will be forced to keep the shitty crocheted hat and one-thumbed mittens on you...just in case she asks to see you wear them.
  • It'll be -30 below windchill and you are out shopping for presents. You've ended up with the magical parking spot furthest away from the mall. It is so far away, you might as well have walked to the mall because you are parked 15 yards from your driveway. By the time you walk to the to the mall from your spot you can't feel your feet and spend more time trying to warm up than actually shopping. You have to go back again tomorrow because cyber-shopping is impossible thanks to the cyber-gamers who are hogging all the internet bandwidth in your house/apartment building/college dorm.
  • Someone will ask you when you are going to: get married/have kids/get a job/go to college. Perhaps they'll ask you why you: got divorced/lost your job/can't control your kids/couldn't have cooked something better or some other insulting/probing question and you say ('Insert the same thing you said to them at Thanksgiving' here).

Just remember...you are lucky to have whatever you have. Tomorrow it could all be gone. I know that everyone who reads my insignificant little blog understands what I'm trying to say. You love what you have in your life and share your success with others, be they big or small. Thank you for that gift of generosity you give all year round. It is special.

It is with all the sincerity and warmth in my heart that I wish you Happy Holidays, regardless of what holidays you celebrate. Be good to each other and love one another every day.

Peaceful Things and Happy Holidays To All,

Josh

Wednesday, December 15, 2010

(Almost) Everything You Need To Know About Surviving Your 1st or 101st Hospital Stay: Written By My Sister, Angela

(If you would like to share this with others, please link to it on your blog rather than reposting it. Thank you for understanding how protective I am of my sister's legacy. :-)

Joshland Note: I recently rediscovered a book that Angie started writing when she was in junior high school, circa 1991. To give you some perspective:
  • George Bush was the president. Not "W", but his pop.
  • "Operation Desert Storm" was in full force in Kuwait.
  • The Minnesota Twins won the World Series in a classic against the Atlanta Braves.
  • Grunge music exploded onto the scene, with bands like Nirvana and Pearl Jam leading the way.
And here was 14 year old Angela penning what, as of today, was one of her legacies to her family, friends, and the CF Community. It was more of a manual of sorts. A "how-to" guide of CF hospital survival, if you will. She was wise beyond her years, well spoken, witty, and willing to share her story with the world nearly 20 years before the internet, blogs, and social networking were the norm. While she never got to finish writing her book, what she DID write transcends cystic fibrosis. It has the power to help anyone who has ever had a chronic illness or life altering condition. Angela wanted to guide her readers through something she knew far too much about: Being a patient. The stage is yours, Angie:



SURVIVAL RULE # 1: IF YOU DISAGREE, DISAPPROVE, OR HAVE ANY DOUBTS WHATSOEVER (ABOUT WHAT IS HAPPENING WITH YOUR HEALTH CARE), THEN ASK AS MANY QUESTIONS AS YOU WANT.

Those darn interns. You know the ones I'm talkin' about. Those "Junior Doctors" as we'll call them, who come into your room and act like God. I don't know about you, but there have been a few times, no, make that A LOT of times, when I have wanted to tell them a thing or two. I actually HAVE a good deal of the time. If you do have to tell them a thing or two, be firm, but don't come across as a jerk. I've come across as one a few times and it doesn't help things at all. Remember: it's YOUR body. Not theirs or your parents. YOURS. Survival Rule Number 1 applies to all types of doctors, residents, fellows, specialists, surgeons, etc... Also remember when it comes to dealing with "Junior Doctors", if you want to speak with someone higher up don't be afraid to ask. It's YOUR choice.

SURVIVAL RULE # 2: NEVER LET ANYONE DO ANYTHING TO YOU UNLESS YOU'VE BEEN TOLD IN ADVANCE BY THE DOCTORS.

We've all been through it time and time again. Just as you feel that tinge of relaxation coming on, someone comes into your room, smiles that ever-so-fake smile and stupid looking smile and then says to you sweetly "It's time to draw some blood." or "Don't worry, it's just a small shot." Oh, Puhleeease. Give me a break! NEVER LET (THE HOSPITAL STAFF) DO ANYTHING TO YOU IF YOU HAVEN'T BEEN TOLD WHY IT NEEDS TO BE DONE! If you are the parent of a patient or a patient who is able to answer for yourself, you have the right to know every detail.

SURVIVAL RULE # 3: WHEN YOU ARE BEING POKED (WITH A NEEDLE) FOR AN IV, BLOOD TEST, OR ANY OTHER REASON, MAKE SURE THEY KNOW THE "GROUND RULES".

AND...


SURVIVAL RULE # 4: IF THE FIRST PERSON CAN'T GET THE JOB DONE AFTER TWO TRIES, TELL THEM NICE, BUT FIRMLY TO GET SOMEONE ELSE.


These, for me, are the most stressful parts of a hospitalization. In fact, I used to just call hospitalizations "Getting IVs". "Getting poked" is no fun for anyone whether you are 60 days old or 60 years old. If you are in a teaching hospital (a university, for example) that means the "Junior Doctors" are either fresh out of medical school or are a few years out of it and are on their internships or residencies. This means they need to use you to get first hand experience doing their jobs, so it'll most likely be a "Junior Doctor" who wants to put your IV in. Mind you, this doesn't mean that they are the best at putting IVs in. It just means they get the first crack at it.

Every time you get "poked", the odds are that it's going to hurt. Maybe not a lot, but I GUARANTEE it's not going to feel good. Make sure you tell them the "Ground Rules":


  • They get 2 pokes.
  • No digging in the vein to their little heart's content with the needle.
  • Put the tourniquet on the sleeve of your shirt.
  • Do not take the needle out with alcohol.
  • If they don't get it in within their two tries, they have to find someone else.

You may get resistance from the "Junior Doctor", who may say things like "Just let me try one more time." or "If you wouldn't have moved, I would have gotten it!" Of course, it's up to you if you let them try again, but use your best judgment. When you ask for another person, request someone with a lot of experience. Remember - don't feel bad if you ask for someone else because it's you or your loved one that is going through the pain.

SURVIVAL RULE # 5: BRING THINGS THAT MAKE YOU FEEL AT HOME, AND NOT LIKE YOU ARE IN A COLD, STERILE DUNGEON.

Being in the hospital can be depressing enough and those boring rooms don't help either. Here are some of the basic, but comforting things to bring with you:

  • An afghan or a special blanket to put on your bed.
  • A stuffed animal, favorite books, movies, or music, your own pillow from home.
  • A family album and a picture of your pet (if you have a pet).

Everyone has different things that make them feel good inside and the more you bring with you, the less scared and homesick you'll feel.

SURVIVAL RULE # 6: GIVING IS THE BEST MEDICINE OF ALL

Sitting in the hospital can be very boring. No, let me rephrase that: Sitting in the hospital IS very boring. That is where practical, fun gifts come in. I'm not saying flowers and gifts aren't nice, but they can be expensive. The kind of gifts I'm talking about are kind that make the patient less starved for the real world. Here are some suggestions that I'm pretty sure will brighten the day of that special patient in your life:

  • Bring a favorite movie or TV show to the hospital and watch it with them.
  • Bring a favorite game to play. Make a favorite meal, bring in something from their favorite restaurant, or bake them a treat.
  • But the best gifts of all are frequent calls and visits from family and friends!

Love,

Angela

Joshland Note: This was her rough draft with some very minimal editing done on my part. Reading it makes me smile because I know that if she had decided to blog, it would have been AMAZING. Not only was she a CF expert, but she was so tuned into all facets of the world: politics, medicine, philanthropy,...you name it, she had an educated opinion on it. I don't know many people who started watching CNN at twelve years old. Meanwhile, her grown up brother writes about his moments of juvenile delinquency and plays with a puppet. Can you say...different? What if we would have blogged together?! She'd have been the news and I'd have been the human interest piece (I use that term very loosely). What a team we would have made! Welcome to AngieTown and Joshland. :-)

I agree with every word of this story, except the part about "not being a jerk." You don't have to be a jerk, but in my lifetime with cystic fibrosis, I've learned an unfortunate truth: Occasionally, being a jerk is the ONLY way certain medical professionals will listen to you. Normally I am not a jerk, but I do challenge my doctors, nurses, and RTs, etc... because that is the only way I can protect myself and it's only way they will EVER get better at their job. That includes both their skills during medical procedures and in their bedside manor.


I was relieved to find out during my last hospital stay that the Vascular Access Team at the U of MN coincidentally instituted Angie's "2 poke rule" into their code of ethics some time ago. Angie had terrible veins and even after getting a porta cathe (permanent IV line), she still struggled with blood draws and needles. The tears would start at the mere mention of them. It's getting better, my sweet sister. :-)

You want to know why I do what I do with the puppet? Yes, I do enjoy creating those videos, but the real reason is because there are kids that have to deal with things like Angie did all the time. I want them to smile, if only for a moment.

You want to know why I let the "Junior Doctors" beat my body to smithereens when I go in-patient or have tests/procedures done? It's because I never want another kid, whether it's a 1 year old or a 17 year old, to go through what Angie went through. Granted, things have improved by leaps and bounds in the past twenty years, but those new doctors and nurses still have to learn on someone. I wish there was a better way to have medical professionals learn their craft other than making mistakes and accidentally hurting kids. It's not their fault, but I just hate it.


I'll leave you with this final thought: Personally, I don't love a ton of visitors when I am in the "The Joint". If I'm in there it means I'm in rough shape and things are happening to me that aren't so pleasant to anyone's five senses, and possibly the sixth one. That being said, I do appreciate the phone calls and emails. My dear sister was right, contact with the real world is a very good thing. What a pleasant and much needed surprise it was to have internet access while I was in there for my recent stint. As I said before, Angie would have loved things like blogging, Facebook, and the internet. It certainly helped me pass the time. You can read in her own words how lonely she was. I think of that every day of my life. I hope after reading this you will take a moment to make a phone call, send an email, or hop in the car and go visit the the people you care about who are cooped up in that "cold, sterile dungeon" or even someone who might be feeling lonesome at home (CF or not) . Take time to send them some love instead of mowing the lawn or doing the dishes. Those things will always be there to do. People unfortunately aren't as eternal. Only in our hearts.

Angela,

Today marks 17 years since you passed away. As I say in many of my blog posts, there isn't a day that goes by where I don't think of you and wish you were here.
I know this isn't quite a published book or a movie, but at least your dork of a brother can share your message with a few people and teach them something very important about life: It's much bigger than just their little corner of the world. I love you and I miss you with all my heart and soul.

Love,

Josh

Monday, December 6, 2010

Joshland Question: "How Are You Feeling?"

I'M ASKED THIS QUESTION EVERY DAY.

The funny thing is, the answer that I give is never good enough for everyone. What do I mean?

If I give the super positive answer like this,...

'Everything thing is good, a little bumpy right now, but a couple a drugs, a little nap, and some hot chocolate and I'll be good to go."

...then people are frustrated because they want to know more. They want to know specifics for educational, supportive, and empathetic reasons. Those are all valid reasons, but they're still not enough for me to pour my proverbial heart out. If I do that, people tend become overly concerned. I appreciate it, don't get me wrong, but my health is something I tend to deal with privately rather than publicly....particularly in the bloggy world of Welcome to Joshland. I'll give you little tidbits or I'll write about things after the fact, (case in point, my hemoptysis episode from last spring/summer), but more often than not I don't want to talk about the most intricate facets of my health online.

THEN AGAIN...

If I give a honest, somewhat negative sounding answer like...

"I'm okay, I'm plugged up here, here, and here (as I point to my chest). It hurts like hell to breathe today. My belly is doing loop-a-tee loops thanks to the antibiotics I'm on and I'm really tired of the grind. Otherwise I'm peachy keen, jelly bean."

..., then I've had some of my closest friends and family say (in a partially joking/partially serious way):

"Josh...when I ask you that question can you do me a favor? Just tell me you're doing well, that everything is great, and I don't have to worry about you."

My response (in a partially joking/partially serious way): "So you want me to bullshit you? Listen...If you ask me a question like that, then I'm going to give you an honest answer because that's the kind of answer I'd want to hear from you. I don't think my answer was an "Oh-poor-me" answer, but it certainly wasn't all "candy canes and puppy dogs" either."

It's not my job to protect you from the truth. My life is my life. I'm not looking for sympathy. There are plenty of other people in the world and probably in your own lives that are going down that path with you. I'm not one of them. If I'm that blunt in my reply, then there must be a good reason for it. If I ask you for help, then it must be at a time when I need it the most. If I say "I can't do this today", it's the truth 99% of the time. I can't afford to be as nonchalant about my health as I was when I was younger. I ain't dying, but I'm much more conscious of how precious life and time is, especially after being as engrossed into the lives the CF Community as I am now. There is so much positivity and happiness combined with so much pain and death at all ages out there. It's a big reason why I don't waste my time on bullshit anymore.

It reminds me of the song "Garden Party" by Ricky Nelson. One of my favorite songs of all time, the chorus rings so true:

"But it's all right now, I've learned my lesson well. You see, you can't please everyone, so you've got to please yourself..."



(Click here to read the true Wikipedia-Story of the song "Garden Party")

Lately, when people ask me how I am, I reply with this little gem:

"I'm livin' the dream, kid. Livin' the dream."

It's a dream that's filled with smiles, hugs, hope, optimism, love, laughter, and peace. It's also filled with mucus, antibiotics, frustration, pain, guilt, and sadness. I think the best stories have a little bit of everything in them.

Now that I've gotten that off my chest, how do I feel about it?

I'm living the dream, readers. Livin' the dream. :-)

Peaceful Things,

Josh

Wednesday, December 1, 2010

'Moganko Episodes' Update & Green Screen Teaser

Since I don't have my "Angie Story" ready yet (sorry Sis), I've decided to post a "Moganko Update" a little earlier than I planned...

I've been getting my "ducks in a row", so to speak, regarding improvements in my Moganko projects. I have a handful of episodes left before I put my overly ambitious plan in to effect! What is that plan, you ask?

THAT IS NONE OF YOUR BUSINESS YET, YOU BUNCH OF SNOOPY MCSNOOPERTONS!

Joshland Note: Snoopy McSnoopertons? Man, I am a nerd. It's really so sad, but true.

All I can tell you is that the plan has to do with promoting CF Awareness on a large scale and that will only happen if I have your full support! Trust me...I dream big. :-)

FYI - I know these things aren't cinematic masterpieces, but keep a few things in mind:

1. I'm doing 95% of these episodes on my own. I do all the writing, filming (occasionally I'll have help from my awesome friends and family, which I appreciate. You know who you are. :-), lighting, editing, and post-production myself. There is a reason professional movies take months and sometimes years to make. It takes FOREVER to do all this stuff! I appreciate the effort of the behind-the-camera crew so much more now as a very novice amateur "filmmaker".

2. I'm waiting on other participants, whose VERY GENEROUS and VOLUNTARY contributions are the things that will make Moganko and my plan a success. That means patience is key. It's also a virtue that, thanks to CF, I think I have a lot of in certain situations.

3. I am doing this on literally no budget. I cut corners when I can. I have a low grade camera. I use green sheets, a shower curtain, home rated work lights, and pvc pipe to make "movie magic". I hope the effort shines through on this cut 'n' paste production.

4. My health ALWAYS comes first, which means it gets in the way of "Moganko Time". I'm as annoyed with it as you are, but all of these projects WILL get done.

I'm sure there are people who think I am a fool and I'm wasting my time doing these things. I've got news for them: I do it because I do enjoy it and want little kids with CF to have something to smile about. If nothing ever happens with my grand scheme, it won't matter one damn bit to me because I get emails and notes all the time from adults about how my videos helped their kids feel good about taking care of themselves while laughing in the process. That makes all the effort worthwhile. :-)

Here is the teaser update video (which is actually longer and more intricate than any of the previous episodes have been if that tells you anything.) I hope you enjoy this and will share it with your friends and family. :-)



Don't forget to grab my YouTube button here to post on your blog. It's a direct link to my YouTube Channel:

"W2J on YouTube" Blog Buttons

Peaceful and Big Dream Things,

Josh & Moganko

Monday, November 22, 2010

Funny Filler Post

I feel like my posts have been on the serious/emotional side lately. The holidays are traditionally a difficult and emotional time for me. Lucky for you (sarcasm), some of those emotions have transformed into words on this blog. I have a few posts coming up that I really let loose on, so that's why I needed a silly post. Something to lighten up the mood and remind myself of who I am most of the time. I am a happy-go-lucky optimist! Okay...sometimes I'm an optimistic pessimist, but I generally view my cup as half full. In fact, if I was to treat Joshland as an every day blog, you'd read a lot of silly posts like this one.

Joshland Note: The "daily thing" ain't gonna happen, so don't get your hopes up, people. I'm on the damn computer too much as it is.

Let the silliness begin courtesy of the internet: Here's few of my favorite television and movie moments that - even though I've seen them all hundreds of times - make me laugh so hard at I cry. Even thinking of them makes me chuckle...hee hee. :-)

Pee Wee's Big Adventure



Elf



and of course...

The Muppets


Monologue by Fozzie Bear with Kermit

Kermit The Frog™ | Myspace Video




I always laugh every day. Even when I feel like garbage, I try to find something that makes me happy. I know the examples above are all slapstick or cheesy comedy bits, but I'm not apologizing for it. I just figure if I think something is funny, then someone - at least one person out of the gazillion on the planet - must think it's funny too. I feel very lucky that I can find humor in the simplest things. If I didn't have that ability, I don't think I would have survived some of the stuff I've been through.

I've got more funny stories coming, but for now I'm in a somber mood. So bring the tears on next week...

I was talking to myself more than I was to you, dear readers.

Peaceful and Lighthearted Things,

Josh

Wednesday, November 17, 2010

A Brother's Confession...


I'd grumble and I'd groan...it was hard to be her little brother.

Sometimes Angie would feel the need to rearrange her room. Guess who got to help her do that? I would be in that little room for most of the afternoon shifting her desk from one wall to the other. Angie had me move her desk into the closet once, which required the removal and rearrangement of all the stuff within her closet. Other times she'd have me twist her full dresser into the tightest of corners, only to move it 5 minutes later because it covered too much of her Antonio Sabato, Jr. poster. It sucked. By the end of the day I really hated Antonio, that handsome, shirtless bastard. My payment for all this work? A hug and a thank you. I was so annoyed, but I grumbled under my breath and left the room.

One time while I was dead asleep, she put ruby red lipstick and blue eyeliner on me. I never felt a thing. It wasn't until I woke up to answer nature's call that I saw something from 'Rocky Horror Picture Show' looking back at me in the mirror. I woke my mom up grumbling, groaning, and probably crying about what my sister did. I could hear Angie snickering from her bed, which increased the pitch of my whine to an audible level only the dog could hear. Mom helped me remove the makeup and gently chided Angie. I only felt slightly vindicated.

In the constant battle of wits that was the cornerstone of our sibling rivalry, I was fighting a losing battle. It was as if she knew what I was going to say before I even said it. My only defense as her dimwitted brother was to punch my sister in the only place I could...the shoulder. Not in the stomach...that's where her button for her feeding tube and her porta cathe precariously lived. Not in her legs...that's where she had to give herself shots every day. Nowhere was "acceptable" but the shoulder, so I'd haul off and lay one into her. She'd recoup and counter with her vicious set of feline-like manicured nails that dug deep into my arm, penetrating several layers of skin and often drawing blood. I still have the scars. Who would get in trouble? Both of us, but I would get an extra talking to because I should've known how fragile Angie was. "Stupid sister." I'd grumble under my breath.

There was many a night that I laid across the end of her bed at home, squeezing her foot above the covers. She'd call my name in the middle of the night because she needed me to stay near by. I grumbled and groaned, but I did it. There was room next to her, but that was reserved for our dog Charlie, who stretched his little schnauzer body as far as it could go, so I was left with the end of the bed. The crimson glow of the numbers from her pink digital clock kept me conscious enough to hear Angie's chest rattle with mucus. Her I.V. pump was warning us of air bubbles throughout the night. It was enough to drive you mad if you weren't used to it. Angie slept right through it. It's amazing what you can get used to when you have no choice in the matter.

The other night I brought up the trash can from the end of the driveway and I was out of breath. It hit me from out of nowhere. I had a moment where I knew what it felt like to be Angie. I cried. It's a blessing and a curse to realize that someday I will know exactly how she felt. I grumble and groan while I continue to cry.

I can't even remember what she sounds like anymore. I try my damndest, but I just can't do it. I think of her every day and selfishly wish she was still here, even though I know she is peaceful. That helps heal my heart a little, but I still grumble and groan.

I miss my bright, witty, charming, practical joker of a sister. I want my passionate, caring, and thoughtful sister back. I still grumble and groan.

I am peaceful. I am positive. I am who I am thanks in part to my sister. I grumble and groan a little less. I miss being her little brother.

Do me a favor, readers? Hug your siblings or your really close friends extra tight next time you see them.

Peaceful "Little Brother" Things,

Josh

Tuesday, November 9, 2010

One Phrase That Bugs Me...

Joshland Note: When I posted this, I didn't expect it to receive the amount of commentary it has. My position has not changed. I do not like the phrase and probably never will. That being said, I want to make sure that everyone knows this post is not an indictment of those who follow this frame of mind. We live our own lives the way we choose and that is a great thing.

This post has turned into a wonderful, respectful, and amazing conversation. I'm so thankful for the brave people who have commented on this blog post. I'm so proud to have the readership I do. Please join in and post a comment if you feel compelled. I would be honored. Much love and peaceful things. ~ posted at 8:00 PM CST on 11/9/2010


This might get me into big trouble, but I'm writing it anyways because it's in my heart and I wear that on my sleeve...

I don't care for the phrase 'no excuses' . To be clear, I'm not knocking those that use this phrase. Yes, I realize it's meant as a motivator and not a disincentive. I know that there are amazing people doing amazing things in the world. Their perseverance is remarkable and they should be commended. Here is a question though: What about those whose minds are willing, but their bodies are weak beyond their control? The "no excuses" mantra can crush their spirit. I know because I've talked to some of those people.

Here's another question:

What if I wouldn't have finished my 5K a month ago? What if my leg just gave out and forced me to quit? I am currently fighting a chest infection that has physically wiped me out. What if that would have happened in the middle of my training? Would it have been an "excuse" to quit? Would you think less of me? I certainly hope not. I am human. I have limitations just as we all do. If we didn't, then we'd all be pro athletes, Nobel prize winners, or millionaires.

I prefer to use this anonymous quote as my motivation: "I'd rather try and fail, than fail to try."

I think it shows just as much character to get knocked down and try again tomorrow. I've failed at A TON of things: college classes, certain jobs, and relationships. Hell, even these "Moganko Projects" have been filled with countless delays and failures. The point is that I'm living proof that you can screw up and still be successful. I've got a few success stories coming in future blog posts, so I won't be giving them away right now. Guess that means you'll have to come back and read them, huh? (Shameless blog plug ;-)

The greatest example of perseverance in my life was my sister. Angie always challenged herself to make it up a flight of stairs. Sometimes she didn't make it, but she always tried. She always tried to go to school, but sometimes her body wouldn't let her. She always tried to be happy, but sometimes life was overwhelming. I will always be proud of Angie for doing her best everyday and in her heart Angie knew she did her best too.

I have a clinic appointment today. What if my numbers are low despite taking my antibiotics, doing my therapy, and staying active? What's my excuse for "failing"? I don't have one because it was out of my control. I'm not afraid to fail if I know in my heart that I gave it my best effort. I don't need to justify anything to anyone else. Only to myself because I'm the one that has to live with it.

Do YOUR best. Don't worry about anyone else. You have your journey and they have theirs. Be your own motivator and lean on those you love to support you. At the end of the day, that's all you need.

I'll leave you with this:

On March 20, 2011, there will be a Virtual CF Run created by The Rock CF Foundation and CysticLife that coincides with the Rock CF Rivers Half Marathon in Grosse Ile, Michigan. Sign up and walk a mile or walk a block. Run 31.1 miles or 3.1 miles. Go up and down your stairs. Just try your best. If you try your best and are not afraid to fail and try again tomorrow, then that is all anyone can ask of you. It's what you should always expect from yourself.

March 20th is my sister's birthday. I wish my leg was better so I could run for her. Maybe it will be better by then. If not, I'll do something to be active. Angie would've liked that.

Click here to sign up for the Virtual CF Run!

Peaceful, Honest, and Blunt Things,

Josh

Monday, November 1, 2010

My Perfect Day WITH CF

It's a crisp fall Sunday...

I wake up and my chest isn't hurting. There isn't 15 minutes worth of green and brown mucus expectoration from the moment I open my eyes. Instead it's maybe one or two minutes of clear and clean stuff. It's thankfully one of those mornings I feel rested because I went the whole night without waking up to cough out the junk that blocks my upper and lower lobes or hunched over in pain because my stomach feel nauseous from swallowing all the crap that drips down my throat.

After a productive lung treatment, I'm focused on the tasks at hand and am able to start them earlier in the day. Yard work is refreshing. I look up to the sky and smile while the wind chaps my lips and makes my leaf blower obsolete. I think the wind is Angie having some fun with me. Anything to make me look foolish. If the sight of me chasing leaves around with leaf blower on a blustery day isn't foolish, I don't know what is.

After my yard work is done , I head to the backyard where my puppies make me smile as they chase those stupid squirrels from the yard and they roll in who knows what just to get the "clean bath stink" off of their fur. We run around the yard and drive the neighbors crazy with our barking (yes, I bark while I play with my "kids".)

"The Boys" and I come inside where my wife gives us all big hugs and softly cup my ears with her hands to warm them up. A quick smooch and a pat on the backside sends me downstairs to the man-cave where I watch the Vikings whup the Packers into oblivion. At halftime my closest buddies show up and we analyze the first half while we play some video games and I fit in another treatment.

After the game, all the important people in my life stop by or call us just to say hello and tell us that they love us.

In the evening, I dance in the kitchen to some oldies music with my wife while we wait for the pot of spaghetti sauce and meatballs to simmer. Then we watch a funny movie snuggled on the couch. After one more treatment it's an early bedtime because I wouldn't feel stressed about the scary parts of my life that surround me every day..

You see, my perfect day is simple. It has nothing to do with material or financial b.s. You can't take that garbage with you. It has to do with love. That perfect day is something I can experience any day of the week because it's always right at my fingertips. It's the little things that make life perfect.

For example:

Yesterday I held my little goddaughter in my arms. She was a giraffe for Halloween. It made me smile when I called her name and she waddled over to me with open arms. I picked her up as my chest was aching from coughing for 3 weeks straight and nuzzled her neck until she made that heart-warming giggle I love so much. I've saved that one in the memory bank forever. I have moments like that every day because I look for them. Do you?

My perfect day with CF is everyday I can wake up and see how lucky I am to be loved, whether I'm in a hospital bed or just living my normal life. When I die, I promise you I will die happy because I will know that I did the best I could with every day. I wasn't perfect. I made mistakes, but I've done my best to make up for them by being good to others and appreciating everything I can.

The past few months have been hard for me, but I am making it through my tough stuff thanks to the little moments, my family and my friends. At the end of the day, if I don't have those three things...I have nothing.

Much Love and Peaceful Things,

Josh

Sunday, October 31, 2010

When Zombies Took Over Joshland

Here is an old time radio style Halloween treat for my readers. Enjoy and read along below while you listen to the video!



When zombies took over Joshland,
it threw the world into chaos
You see, those zombie faces caused "Scooby Doo" chases
Which left only our wits to save us

It was me, my wife and the pooches,
and of course Moganko, my buddy.
I'd had puppet in hand, just like I planned.
Which proved to my wife I was nutty.

With my family in tow, I knew right where to go
My zombie wisdom made the right call
Cause like most zombie tales, I knew, without fail
that we'd end up in some kind of mall.

The Zombies were fast and hot on our heels,
moaning their frightening yells
they broke into the mall, so once and for all
we prepared to defend ourselves!

We fought zombies with mops and with buckets,
We used big bats and and loud tambourines
I even gave one a brain freeze at the frozen treat stand
with that red stuff from the Icee machine.

Of course, I was tough and oooooooooooooozing machismo,
fighting zombies with all of my might
We were stealthy and quick, which was just the trick
And we survived our intense zombie fight

As we watched the sunrise, I wasn't surprised
To be in both a good and bad mood.
Happy to be alive, but angry inside,
Because we were almost zombie food.

Now Joshland has gone back to normal,
Everything is sure peachy keen,
And since the coast is all clear and no zombies are near,
I can say have a Happy Halloween! :-)

Hee hee. I'm such a dork.

Peaceful and Safe Halloween Things to all of you,

Josh

Thursday, October 21, 2010

Joshland Question: The Importance of Consistent Therapy


Q: Were you always compliant with your treatments? Do you have an advice for a child that knows they are very important, but hates to miss anything else going on in the family?

A: Do you want the "parent friendly" answer or the honest answer?

Too bad because you are getting the honest answer.

NO. I was not always compliant with my treatments. It wasn't until I got into college that I really figured out how important treatments were to maintaining my health.

There were a few reasons for this:

When I was a kid I was active. When I say active I mean outside from dawn til dusk playing sports, riding bikes, swimming, signed up for rec league wrestling, and getting into mischief. I had a great group of friends that I played with everyday after school and all day on the weekends. When you're an active kid, it's hard to understand why you need to sit still for a half hour and do a therapy. It just made no sense to me whatsoever.

My super active nature continued from elementary all the way to high school where I was a wrestler on the practice squad. I trained new teammates and participated in 2 hours of cardio/ match training 5 days a week from fall to early spring. During the season and in the off season, I took a weight training class where I worked on building muscle and endurance.

When we'd go into the doctor's office, my mother would tell the doc that I was not doing treatments and she just knew it was going to affect my lungs in a negative way. Then, I'd blow my PFT's (Pulmonary Function Tests) and the numbers would be off the charts fantastic. The doc would be pleased. While my mom would be happy as well, she'd be irate at the same time. She was also taking care of her daughter who was in and out of the hospital all the time and could barely breathe. She wanted me to live my life, but she also wanted me to be realistic and develop a CF routine that I could manage as I grew older. One that would handle the eventual progression of this disease.

My wake up call (as I mentioned in this previous post) was when I hit my mid 20's and had to go in for my first round of hospital I.V.'s. My life had drastically changed. I was in college at the time and became less active. I went from hitting the gym 3 days a week to working on 10 page papers and hanging out in the dorms. My lungs got worse because of the disease, but things may have been different had I made the adjustments out of high school to fit my new routine. I can speculate all I want, but I think prophylactic treatments would have limited any damage that occurred during my college transition. It's not that I didn't do my treatments. I did them, but sparringly because I figured my ability to bounce back from being sick would always be the same. And it was....until I got really sick that first time.

Fast forward almost a decade (ugh, has it been that long?) and I do 3 treatments a day, 4 if I'm under the weather. I try to be active in some way every single day because I know it helps me stay healthy. Walking my dogs, doing 100 push ups (I'm still stuck at 50) and trying new daily routines until I find the one that fits just right. It's much harder to develop and stick to a routine as you get older. That's why I tell young people to develop those good habits now. I'm talking everything: Exercise, treatments, ordering meds, making doctors appointments, learning your body and it's warning signs for getting sick so you can put a stop to it early, and juggling a social life with a CF life. It all matters.

So to your son or daughter, I say this:

It's so important that everyone in the CF Community realizes that you have your own personal journey with this disease and that you do the best you can with what you are given in life. That's ONE of the reasons that you see so many people with this disease achieving amazing things physically, professionally, and academically. It's also why you see some people struggling to stay healthy, but still achieving the goals they set for themselves. Big and small goals like finishing school or walking up a flight of stairs. All of those goals are amazing. Their value should never be discounted. Realize your strengths and NEVER sell yourself short. Work around your obstacles. Know that sometimes you will not achieve your goals, but don't get discouraged forever. The key to being successful in life (in my opinion) is believing in yourself, working toward your goals, and always creating new ones. Sometimes I need to be reminded of that myself. :-)

You say, young friend, that you understand the importance of doing your treatments, but don't want to miss out on anything? There are a few things that you can do:

1. Ask your family to wait until you are done with your treatments to start the activity.

2. Ask your family if they can move the activity to a spot where you can participate while you do treatments.

3. Take this alone time to do something that only you enjoy doing. Listen to music, record your favorite show and save it for treatment time, do your homework (Ugh, don't I sound like your parents?), use the computer if you have one. Find a NEW hobby. Take me for instance...I started a blog. :-) While you do your activities remember to focus on your treatments. The coughing, the breathing, the whole nine yards. That's the most important part.

MOST OF ALL...

4. Realize that you are doing treatments so that you DON'T miss out on anything going on in the family. If you get sick, that can lead to all sorts of missed family time thanks to doctors appointments, lack of energy, missing school and having to catch up on homework. The list goes on and on. You do treatments to PREVENT getting sick, kiddo.

I hope this helped you a little bit. I love you and I believe in you.

Peaceful Things,

Josh

Thursday, September 30, 2010

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

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

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


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

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

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

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

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

I'm talking about their loved ones.

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

Meanwhile...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peaceful, Honest, & LOTS OF LOVE Things,

Josh

Sunday, September 26, 2010

Run A 5K...CHECK!


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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




Peaceful and Goal Reaching Things,

Josh

Friday, September 24, 2010

RACE DAY PROMO, BROTHER!

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

Here's my inspiration:



Here's my promo:



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

Peaceful, Yet Pumped Up Things,

Josh

Monday, September 20, 2010

Running Scared: Let The Cursing And The Pain Begin

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

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

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

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

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

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

This definition was taken from Google:

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

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

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

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

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

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

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

Week 1:

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

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

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

Week 2:

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

I DID IT....WITHOUT STOPPING!

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

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

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

9/10/10

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

Week 4:

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

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

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

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

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

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

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

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

Week 5:

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

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

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

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

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

Welcome back! :-)

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

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

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

Nearing the End

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

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

Bottom Line: Fear makes adrenaline run.


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


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



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

http://www.firstgiving.com/joshfromjoshland

Peaceful and Fearful Things,

Josh

Thursday, September 16, 2010

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

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

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

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

My Perfect Day - Without CF

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

My face would be stuck like this:



















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

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

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

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

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

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

OR...

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

OR...

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

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

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

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

Peaceful and Perfect Day Things,

Josh

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Peaceful Things ~ Josh
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