Kevin of Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife’s birthday.

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Our pediatrician admitted it early on.

The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.

The next doctor wouldn’t admit to not knowing.

He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn’t know much.

The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift — a diagnosis for her little girl.

That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.

I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.

© Angie [A Whole Lot of Nothing] for A Whole Lot of Nothing • Your Favorite Blog, 2009. | Permalink | No comment | Add to del.icio.us
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And now for a word from OHmommy.
She’s classy. She’s stylish. She’s polite. She’s here because I’m none of those things, and she needed to be more like me and let her Bitch Flag fly.
I CAN NOT WAIT to meet her in July. I want to love on her and pet her head and tell her she’s wonderful. And maybe smooch on her a little bit.
Please, show her some love.
____________________________________________________________

Today marks the final countdown to my baby sister’s wedding.

Only 365 more days to go.

Naturally, I am in the wedding party. As well as my son and two daughters. All of us involved in her special day. Even months before getting engaged to her man I received emails entitled “What do you think about this dress?” and “Do you think having a reception at the gardens is classy enough?” and “Don’t you just LOVE these flower girl dresses?”

OMG. No, I do not. Not at $300 a pop, times two. I do not. I don’t like them at all, baby sis. I do not.

Last week she sent me an email with half a dozen images of flower girl head pieces. I just imagined my opinionated middle child and her tag-along-baby-sister on the day of the wedding, tossing the Martha Stewart inspired lilies of the valley fresh wreaths in the middle of the church isles, and stomping on them. And. So. I sent her an email.

“Hey. Love the look of a fresh wreath. I tried that on my flower girl. She hated it and never wore it and I wasted money on it. So. Take a look at this adorable headband on etsy just-in-case one of my girls has a tantrum. XOXO Pauline.”

Minutes later. My super cute pink phone vibrated and I read this….

“Thanks, but I’d really like to pick out what they wear. It will be part of the theme of the wedding I create. And hopefully you can help by trying to get them used to the idea beforehand and let them know. If just for the pictures even, Id be happy. I do appreciate your ideas though. They are good and I am ready to consider many things. Just ultimately I will decide what fits in with my vision best. Its a one in a life time thing/vision, right?”

I. Have. Not. Responded. Yet. Because…. OMG. My blood is boiling. Only 365 more days to go, yo!

© OHmommy for A Whole Lot of Nothing • Your Favorite Blog, 2009. | Permalink | 52 comments | Add to del.icio.us
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Hey there doods – I’m guest posting over at Classy Chaos, aka OHMommy’s blog. It’s all neat and clean over there, so I thought I’d add my mess to her perfection.

If you’re new here, WELCOME!
Read, peruse, and come back for more tomorrow, and the next day, and the next. It’s a little different over here from the perfection of Classy Chaos. There’s a stank around here that can’t be bleached out. And that’s how I roll.

Word.

© Angie [A Whole Lot of Nothing] for A Whole Lot of Nothing • Your Favorite Blog, 2008. | Permalink | 10 comments | Add to del.icio.us
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And now, a word from a highly respected representative from Canadia, our 51st state: Ms. Huckdoll.

For those of you who don’t know me, I am Huckdoll. Born and raised in Vancouver, BC.

Canada.

Most of my young life was spent inside ice arenas watching my brother, cousins and friends play hockey. Saturday nights especially, were all about being in front of the television watching Hockey Night in Canada, whether I liked it or not.

My home team? The Vancouver Canucks.

I’ve been to many, many games – on occasion paying upwards of $300 a seat for playoff tickets.

What can I say? I love the smell of ice and more so, the energy of a few thousand people around me in one complex sharing my passion for one single thing – hockey.

When Baby Daddy and I found out we were pregnant, the first thing we purchased were Vancouver Canuck onesies. My daughters fell asleep many nights watching hockey games wearing these little things.

As they got older, they continued watching with us – on their own will. They’re almost three and not fully potty trained but they know almost every word to our national anthem. Some nights I’ll put them to bed and hear them softly singing it through the baby monitor.

They’re hockey girls, through and through. Why wouldn’t they be when they live in a country like Canada, in a city like Vancouver with so much love and passion for the game? Not to mention a dad who lives, breathes and plays the game.

This makes me smile and brings a tear to my eye, even. I LOVE Canada THAT much. I’m nothing short of proud to be one of these crazy Canucks in this video.

So, it didn’t really surprise me the other evening when my daughter asked me for a hockey beer cup.

What’s a hockey beer cup, you ask?

Well, I didn’t know either, so I asked her to show me. When finally made our way to the fridge, she pointed.

She wanted a beer.

My almost three year old wanted a hockey beer cup. To be brutally honest, I laughed my ass off. I’ve really never heard anything so cute in my entire life – that the twins associate beer with hockey. Talk about Daddy’s girls!

But, being the good mommy I am, I handed her a juice box instead and she cheers’d me with the unopened beer in my hand.

Only sixteen years to go, my hockey-loving baby girl.

Sixteen years till you realize that spending $24 for three beers at game is something only us crazy hockey fans do with a smile.

GO! Calgary Flames Canucks, GO!

© Angie [A Whole Lot of Nothing] for A Whole Lot of Nothing • Your Favorite Blog, 2008. | Permalink | 37 comments | Add to del.icio.us
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And now for a little guest post from Bosssanders:

I’m not really sure how this whole guest blogging thing works. Do I introduce myself? Are you supposed to google my name and get all the dirt you can on me before I even start? Okay. I’ll wait right here while you do that. You good? Great.

Oh crap. See. I already screwed this up. Do I use real names or fake names? I am NOT calling you “Mama.” Nope *shake head*. I put my foot down.

MissSmartyPants (the author of this blog, who I’m not sure if I can use her name or not…you know, the lady who entrusted me to write a quality blog post? Sucka! Yeh, her…) had asked in a comment to one of my most recent blog posts about both geocaching and cycles. I’ll cover one of those lovely topics…with a story:

*Ahem. Clears throat*

Despite the numerous claims, I do not wish to inflict pain upon my in-laws. Mostly. (Just kidding if you find this, somehow.) Anyhow, last weekend we found an awesome geocache (stick with me, I’ll explain more later). And, me being the kind-hearted, sweet, loving, awesome (get the point yet?) wife of their son that I am, I decided to invite my parents-in-law. I told them about how awesome geocaching was – a sport where you combined hiking and “treasure-hunting” by using a GPS to locate waypoints with cool little treasures hidden. I told them how great this particular trail was – only a small hill that “didn’t make me breathe hard climbing” and no swarms of angry mosquitoes and mostly clear trails. They got excited and we made it a date (this past Wed).

Unfortunately, somewhere in the conversation there was a mix-up. A conversation gap. Hearing of voices. Bright lights. What THEY heard was: Super easy trail. On a road….a paved road. Little to no walking. At all.

And, then of course, when I told hubs to please relay to his parents that they would need: a walking stick, water, tennis shoes, bug spray, and items to trade in the geocache… he forgot.

I was a little confused when I offered to take our one year old daughter, L, and put her in the baby carrier and her Granny (his mom) told me that she wanted to carry her. I became a little more confused when she refused the perfectly good baby wrap/carrier/sling. I warned her, but nobody listens to me. And, so we began. Without an extra 20 lbs on my front, I could run up the steeper-than-I-remember hills. His mom? Not so much. I could hear her cursing my name and possibly even damning my existence 20 feet away. Father-in-law (FIL) was walking with a make-shift walking stick that bent with every step…and, with every step, it snapped off an inch or so. All of them (except for L and I) were smacking mosquitoes.

All things considered, I think it went fairly well. We hiked, found the nifty treasure, explored remains from an old hotel and old homes that were in the area. We walked over old balconies and over old foundations and where parts of bathhouses still lay. We imagined where bedrooms once were in homes, and found old ice-boxes (actually, we just saw one) and we even found a home where the fireplace and chimney was all that was left standing. On the way back, we watched the sunset over the lake. It was beautiful, it was serene…except for the heavy panting in the back and the sound of sister-in-law’s goofy boy friend sliding down the hill…on his back (in loose gravel).

Nobody died from that trip – yet (despite numerous threats). Although that is still to be determined, because last night, after we got back – hubs and I pulled a combined total of 25 ticks off of ourselves. Okay, okay. Actually he pulled them off of me as I whimpered and squealed like a baby. But, I swear if you ever try to bring it up again, I’ll deny it. I don’t even know what you’re talking about. Shut up.

The moral of the story? There’s not one, really. Except, if you go geocaching, wear walking shoes, bugspray, and comfy clothes to walk in. You might even want to take some water to drink. And, if walking makes you feel like you’re about to die, this might not be for you. Just sayin’. Oh yeah…one more: If your daughter in law happens to be me…you should listen to her and take the damn baby carrier. You will not want to walk 2 miles with a 20 lb squirmy child, and nobody else will want to carry her the rest of the way, seeing as how you volunteered. That daughter-in-law of yours? She’s one smart cookie. Amen.

*Disclaimer: I’m a smart ass and anyone and everyone is subject to my smart-ass-ness. I love them (YOU) all the same. Really. I swear.*

Next week: MissSmartyPants will explain what a cycle is to you all. Be sure and ask her lots of personal/gross/icky questions about it.

© bosssanders for A Whole Lot of Nothing • Your Favorite Blog, 2008. | Permalink | 8 comments | Add to del.icio.us
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