My Final Plea: Vote Cure JM in Pepsi Refresh Today, Get Others to Do the Same

This is Thing 1 about a month into her diagnosis of juvenile dermatomyositis in 2002. She’s nearly 3 years old in this photo.

That’s apple sauce and mashed potatoes in front of her. That’s all she could swallow because the disease had weakened her throat muscles so severely.

Soon her voice became an intermittent gargle. She began coughing frequently.

The doctors said when Thing 1 swallowed, food and drink sometimes shot upwards into her sinus cavity or slide helplessly into her lungs. This resulted in aspiration pneumonia.

Shortly after they told us this, I helped the nurse shove a NG tube up Thing 1’s nose and down into her throat so we could be sure food and medicine went where it needed to go.

Then every day, three times a day, a broad-chested Jamaican orderly would strap Thing 1 into a navy blue life-vest. It contained pulsating pistons that rapidly pounded her chest and back to try to loosen the foreign matter that had caked onto the lining of her lungs. After, he would force a vacuum tube down her mouth and try to suck the gunk out.

If he felt the contraption did not break enough of the gunk up, he would roll Thing 1 onto her stomach and administer disciplined blows with his hands as he tried in his thick tropical tones to convince her not to fight him.

Thing 1 recovered from this common complication of her autoimmune disease within a few months

Her screams during treatment – they still pierce my brain and heart, even in their distant echo, no matter how many mental walls I create to baffle the sound.

While Thing 1 is doing well though still on a handful of daily meds, other kids with juvenile myositis (JM) diseases have not been as lucky.

Mikey Galvin, above, developed PCP pneumonia as a complication from his juvenile myositis disease. He went onto the lung transplant list.

He died at age 3.

Mason Smedley, above, received his diagnosis at age 17 months. He suffered a perforated bowel from the heavy doses of steroids used to treat his JM. During surgery to remove a portion of his colon, it was discovered that he also had an enlarged heart. The prescribed steroids had also resulted in high blood pressure, a suppressed immune system, cataracts and pneumonia which left him with a scarred lung.

Mason, who has calcium deposits encasing parts of his limbs, is still plugging along. On Sept. 11, a concert will be held on his behalf in Portland, Ore., to raise funds to find a cure for his disease.

And I’ve already told you about Cole, who died two weeks ago.

You know what I need you to do; but I also need your help getting others to do the same.

On this last day of voting for the $250,000 Pepsi Refresh grant for August, I need people to get as many NEW voters as possible to text or log-in and cast ballots for Make JM a Memory.

Send an e-mail to people on your Christmas card list.

Ask people in the cubicles next to you.

Paint your car window.

Forward this post on to someone you know. Stumble it, Digg it, I don’t know – print it out and shove it under a windshield wiper. Anything.

Even if you get us one extra vote, that’s one more than we had before. One more vote closer to finding a breakthrough to end this disease.

If Cure JM wins, every dollar, every cent, of the grant money would go into research by doctors who have selflessly dedicated their professional careers to finding better treatments and a cure for a rare autoimmune disease that most people never heard of. These are true heroes who are working to create a better world for children, but they need funding to do their work.

So please, vote 3 TIMES today:
(1) Send a text vote: Text 100850 to PEPSI (73774) (standard text messaging rate apply)
(2) Use the Facebook app: http://bit.ly/CureJMonFB
(3) Vote directly from the Pepsi website site at http://www.refresheverything.com/makejmamemory

Then help us find others to do the same.

Not for me. For the children.

Technorati Tags: Pepsi Refresh

Meet My Spouse, Flathead

Kids, while I’m finishing up these Sea Breezes and Elmore Leonard novels at Blogger Rehab today, your dear Aunt Becky from Mommy Wants Vodka will be looking after you.

Aunt Becky is the wisest person I know. In fact, just a few weeks ago she shared with me the most profound statement I believe has ever been uttered, or in this case – texted, in the history of mankind:

“Dude. Amazaballs!”

Write hard, Aunt Becky; write hard.

* * *

Last night after my husband, The Daver, and I watched a very nail-biting episode of whatever reality show is currently making me wish I was instead beating myself about the face with a bag of lemons, I sat down nearish to him.

(pat pat pat) "The back of your head is entirely flat at the top."

The Daver (ignoring me entirely)(duh): "Yeah?"

Aunt Becky: "Yeah. And the top kinda makes you look like Predator."

The Daver (still absentmindedly pecking away on his Blackberry): "Yeah?"

Aunt Becky: "I bet your mom dropped you on your head a lot."

The Daver: "That explains a lot."

Aunt Becky (giggles): "You know, we could get you one of those helmets they put kids in now to reshape your skull! Those kids look so CUTE!"

The Daver: "NO."

Aunt Becky (laughing): "Can you IMAGINE walking around with one of those helmets as an adult? I'd decorate it for you! I could write your NAME in glitter! Or put some CHICAGO FIRE emblems on it! You'd look so FANCY going to your Big Boy Job in the Financial District with a helmet on!"

Aunt Becky: *bwahahahahahaha*

The Daver: "I think my skull is done being molded."

Aunt Becky: "Oh."

The Daver: "So don't get any ideas."

Aunt Becky (small voice): "Oh."

The Daver: "Becky? You didn't buy me a helmet, did you?"

Aunt Becky: "....Define BUY."

The Daver: (buries LUMPY head in hands)

Aunt Becky: "It's okay, I'll love you and your misshapen head no matter what! Because THAT'S WHAT I LOVE YOU MEANS. TO HAVE, HOLD, AND OBEY...

(pauses)

....Your lumpy head!"

The Daver: "You made the priest take out the 'obey' part. Remember?"

Aunt Becky: "That's because I never obey you."

The Daver: "That's for DAMN sure."

Now that he's remembered that I never obey him, he won't be as mad when he finds out that I ordered him a plagiocephaly helmet for his birthday.

I think the "I love my wife" decals and hearts will make him change him mind and he'll decide that wearing a helmet 23 hours a day is a very good idea indeed.

* * *

TWO DAYS OF VOTING, LITTLE OF MY SANITY LEFT

We’re Number 1!

No, Number 2.

No, no. We’re Number 1

Wait. We’re back at 2.

That’s how it’s been since Friday in Cure JM’s effort to win a $250,000 Pepsi Refresh grant. Either spot will win the money providing we don’t get lazy and get overtaken by another group come Sept. 1. That’s why we’re not taking chances.

My Love has been working the phones nonstop horse-trading votes.

I gave out voting cards to poop-bag toting patrons at a dog show yesterday.

Father and Sister of the Uncool stuffed random mailboxes around our town.

Even The Mother of All Uncoolness – she who only plugs in the microwave when she needs to defrost green beans and still has me program her answering machine for her -- learned to text message! It’s PANDAMONIUM!!

Please continue to vote today and Tuesday then convince a friend or eight dozen to do the same. Here are the three magic ways to help us each day:

1. Text 100850 to Pepsi (73774) via a cell phone Your cell phone, your kids’, that pony-tailed faux hipster at the coffe shop. Just grab a cell and text.

2. Use the Facebook app: http://tinyurl.com/25ls7f8

3. Vote directly from the Pepsi site for our entire Kids to Win team.  You will need to set up a Pepsi Refresh account -- takes a minute and allows you to vote for many great organizations we are partnering with: http://tinyurl.com/27o7239

And to those of you voting, Tweeting, reTweeting, Facebooking, blogging and selling your vital organs for our cause, thank you for holding on to your big kind hearts.

Vodkamom Receives an ‘Incomplete’

Boys and girls, settle down please. While I’m buried in martinis and David Sedaris essays during my self-imposed Blogger Rehab today, everyone’s favorite alcohol-swilling kindergarten teacher, Deb of Vodkamom, will be substituting.

She was supposed to be here last week, but she had to make an appearance in her local newspaper, then on the Today Show blog and … well, I’ll let her explain the other reasons for her tardiness.

* * *

Top 5 Reasons Vodkamom Did NOT Finish This Post

5. I was busy e-mailing my bloggy friends, aunts, uncles, brother, sister, teacher friends and some of my enemies to beg them to vote for Cure JM to win a $250,000 grant over at the Pepsi site. While most of them said they’d be glad to, they also felt the need to tell me that they were sick and tired of my e-mails begging and pleading to vote for things. Then when they realized I
didn’t want them to vote for ME - they said OK. Then they proceeded to block anymore e-mails coming from me. I’ve been spammed.

4. I was busy fighting with Bitchy and Sassy over buying EVERYTHING that wasn’t nailed down at Target and Wal-Mart, and packing them off to COLLEGE, and forgot I had promised Kevin I would guest post. Then the ensuing
sobbing caused such a FLOOD that my keyboard wouldn’t work for three days. Honest.

3. I was traumatized over offending one anonymous commenter when I blogged my crazy two weeks of worrying about FATTY lipoma – and forced myself to stay away from the computer.

2. After realizing that we hadn’t requested enough financial aid for Bitchy AND Sassy to attend college, I have been spending the last three days e-mailing everyone and their brother who might have any ties to the financial aid office at BOTH universities. It’s on days like these that I regret being Polish.

1. While preparing for the news that I MIGHT have cancer (sorry, Anonymous, for sharing my real true life) I was busy eating 12 pints of various flavors of Ben and Jerry’s Ice Cream. Then, upon hearing the news that I would in FACT live, albeit with a FATTY LIPOMA attached to a chest muscle, I ate even MORE ice cream in CELEBRATION of my prognosis of life.

Now, I’d like to write an even MORE incredible post, but I have to go workout like a madwoman to try and negate the 12 BAZILLION calories I shoved in my mouth over the weekend.

* * *

Keep voting every day through the end of the month to help Cure JM win a $250,000 Pepsi Refresh grant. We need to hold on to the No. 2 spot until Sept. 1 to win the money. If you can, also vote for these other great kids’ causes we are supporting.

You can also text your vote once a day – text 100850 to PEPSI (73774)!

I’ll Give You a Free Press

Want revenge on the local Chinese restaurant that’s always stuffing menus under your windshield wiper?

Then you need some flyers to plaster on its storefront window that say “Dim Sum Of This, Bozo!”

Tired of all those negative ads politicians have been mailing you every day this election season?

Well, you should send them back some tactfully designed postcards featuring mooning garden gnomes.

These and many more practical and less sophomoric things can be accomplished with the help of one of my generous advertisers, NextDayFlyers.com. They also do cool business cards and charming greeting cards but that doesn’t make for entertaining reading for you, now does it?

IT’S A GIVEAWAY, CONTEST, A FREEBIE!

As proof of their blind faith in me as a means to their ends, they are letting me give one of you fair Uncoolniks a $25 printing credit good for anything they sell online. Here’s the rules, you need to:

• Be at least 18 years of age.
• Leave a comment, any comment, on this post.
• Be hungry like the wolf. Or at least a bit peckish.

That’s it. Winner will be announced in one week’s time.

Disclosure: Duh, these folks bought ad space on my blog. This giveaway was part of our agreement. They offered me a printing credit, too, but I’m passing solely because they were nice enough to buy ad space. Makes me feel like less of a status symbol and more of a man.

* * *

Please don’t forget to vote today and every day through the end of the month to help Cure JM win a $250,000 Pepsi Refresh grant. We need to hold on to the  No. 2 until Sept. 1 to win the money. If you can, also vote for these other great kids’ causes we are supporting.

Back to my self-imposed Blogger Rehab. Watch for more special guests Friday and Monday.

Chickens

While I’m knocking back mojitos and Carl Hiaasen novels in Blogger Rehab this week, a few friends will stopping by to keep you entertained.

Today welcome The Holmes, a colleague from DadCentric and one of my true favorites in the blogosphere. He has illustrated chats with his testicles about his vasectomy, even stranger human encounters when he has to provide a follow up sperm sample and, as you shall read, a chicken fetish that would make Gonzo from The Muppet Show blush.

* * *

“Those two are Spanish, that one is British, that one is American, and those three, I think, are Australian.”

I listened a little closer, but I couldn’t detect any accents.

“Like, that’s where they all came from?” I asked.

“Like, that’s where they’re all descended from. I’m pretty sure they all came from here.”

“Ah, so that’s why all their clucks sound the same.”

My wife had just run through the breeds of the chickens that we keep housed in our backyard, including their names, national origins, and some interesting factoids. Like how some of them will lay blue or pink eggs, hence the name Easter Eggers. We cooked up a blue egg for our 4-year-old and he got pissed that only the shell was blue. He looked at us like he’d been tricked.

My wife knows a lot more about all this chicken stuff than I do. She should. I’m just the insanely handsome muscle. This whole chicken-and-egg project was her idea. Which came first? Who gives a flying cluck, they’re both plenty tasty if prepared properly.

Ever grilled something dead while the live version of it was clucking around at your feet? That’s a weird feeling.

Does anyone remember that cartoon Chicken Boo? It was one of the features on Animaniacs. It portrayed this human-size chicken that people kept mistaking for a real person in spite of the fact that the only sounds to come out of his beak were clucks and ba-goks.

Anyone remember this? Anyone?

My wife doesn’t believe me that this show ever actually existed. I sing the theme song at her and she just looks at me like I laid an egg:

“You wear a disguise to look like human guys, but you’re not a man, you’re a chicken, Boo.”

Dude, I couldn’t have made that up! Look, here’s a picture even:

Every episode ended the same. The people would realize, “Hey, he’s a CHICKEN!!!” and then run him out of town, as if to drive away their own shame at having been so foolish as to place their faith in an oversized rooster.

We don’t live on a farm or anything. This is chicken husbandry of the urban variety. Step out our back door, and right there off of the end of our deck is a real live honest-to-hen chicken coop. The enclosed house portion stands eight feet tall, is painted bright green, and is topped with a slanted metal roof that I imagine sounds plenty hellacious when it rains. Chickens are sound sleepers, my wife tells me. Good for them.

Off of the house there’s an eight-foot-long by four-foot-high run enclosed in hardware cloth in which our seven lovely ladies spend much of their days. They get to come out and wander free when we’re home to keep an eye on things, but when we’re not around, they stay on lock down so that they don’t get eaten by neighborhood cats, so that they don’t eat stuff in our garden, and so that they don’t wander off and get mistaken for real people and cause all manner of confusion.

Because they could, you know?

Aside from being sources of fresh eggs and free entertainment, these chickens that we’ve taken under our wings are in possession of full-blown personalities. They’ve got swagger. Attitude. Sass. In fact, as they’ve grown out of their chickhood into full-fledged chickens, the ladies have become much sassier toward us, their human protectors.

For example, time was, herding them back into their coop was as simple as walking up behind them and just keeping on walking in the direction you wanted them to go. These days, they scatter in five, six, seven different directions. You get one in the coop only to have it come right back out again. Every other cluck sounds like a “f**k you, buddy.” They’re like children in that way, except they pop out an egg every so often. Children only pop out non-edible items.

So the image of a chicken sashaying about in say, some designer silks wrapped around its neck like some sort of anti-chopping block talisman, maybe a jaunty little hat over its comb, yes, it all seems rather plausible. True, their vocabulary is limited, but since when do we let limited vocabulary act as a barrier to becoming a full-fledged human being?

And we didn’t go to all the trouble of raising these chickens only to have them escape, cause a commotion, and then get run out of town. I don’t care where these chickens came from. We want our free eggs, dammit.

* * *

Don’t forget to vote today and every day through the end of the month to help Cure JM win a $250,000 Pepsi Refresh grant. We need to be No. 1 or No. 2 by Sept. 1 to win the grant. If you can, also vote for these other great kids’ causes we are supporting.

Vote In Memory of Cole Flack

Cole Flack of Oregon received his diagnosis of juvenile dermatomyositis in February 2007, roughly four-and-a-half years after Thing 1 received hers.

In the years that followed, this teenager with a love of sports and being outdoors lost his ability to walk. Cole endured multiple abdominal surgeries to deal with gastrointestinal issues caused by the disease and its medicinal treatments. Yet as recently as the fall, he still managed a full course load at school and compiled a 4.0 GPA.

Earlier this month, Cole went into the hospital with pneumonia.

Yesterday, we received this e-mail written by his parents:

“Hello friends and family,
Cole went to be with the Lord at 7 p.m. tonight. It was very peaceful. Cole is free now to run ... jump ... play baseball ... everything a 15 year old boy should be able to do. …”

Cole is the third child with a form of juvenile myositis that our family has come to know since Thing 1’s diagnosis to die from this rare autoimmune disease or its complications.

Three.

When only three in a million children are diagnosed annually in the United States with this disease, that little number grows exponentially in your worried head every time your child coughs or sneezes or scraps a knee.

Please help prevent more deaths of children like Cole by continuing to vote every day this month to help Cure JM, the only national nonprofit dedicated to supporting children with juvenile myositis and their families, win a $250,000 Pepsi Refresh grant.

That $250,000 equals half our volunteer group’s annual budget, a budget raised solely through fundraising done by the family and friends of JM children. Every penny of that grant is set to pay for research into finding the cause and cure of juvenile myositis, juvenile dermatomyositis and other forms of JM diseases.

Right now, we are No. 2 in the standings – we need to hold this position until Sept. 1 to win the grant money. The only way that can happen is with your help.

You can vote up to 3 TIMES, every day, during the month of August!
(1) Send a text vote: Text 100850 to Pepsi (73774) (standard text messaging rate apply)
(2) Use the Facebook app: http://bit.ly/CureJMonFB
(3) Vote directly from the Pepsi website site for our Cure JM and its affiliated causes at http://pep.si/CureJMKidstoWin5

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