Neuro Film Festival

CALL FOR ENTRIES: Submit Your Video About a Brain Disorder

One in six Americans is affected by a brain disorder such as Alzheimer's disease, migraine, autism, MS, Parkinson's disease, epilepsy, ALS, stroke, and more. Make a film telling us your story—or the story of a loved one—affected by a brain disorder. Help us make the case for why more brain research is needed to find cures.

Win Up to $1,000 and a Trip to Hawaii!

Eligible entries could up to $1,000 and a trip see your film screened at the 2011 Neuro Film Festival^SMcontest held in Hawaii. You don't have to be an expert filmmaker to share your story. Learn more about project rules and requirements and judging criteria.

DEADLINE: February 15, 2011

Enter to win! But more important, enter to help spread awareness.


Go here for more info. (And thanks again to PattiG for bringing this to our attention.)

Finding Us Just Got A Little Easier!

Angiomas Suck can now be found at Technorati. Niceeeeee. And don't forget, we're on Kindle too.

Happy Birthday, Bob!!!

Happy Birthday, Bobbbbbbbbbb!!!!

Many pre-recession years ago (five to be precise), Bob requested a trip to Disney World to celebrate his birthday. Just as he had every year. But this time, the big surprise came when we actually went.

!!

We spent his birthday evening dining at Disney. When the waiter found out it, he urged the entire restaurant to join in the celebration. He clapped his hands, silenced the room, and announced, "Join me as we wish Bob a happy seventh birthday... and his parents a happy sixth anniversary."

Um. Yeah. It's also our anniversary (and noooooooo, it was actually our eighth. Who knew our waiter would channel his inner comedian *sigh*.) But that's the thing about being parents, I guess. Once your children enter your lives, everything else sort of takes a back seat for a while. And it's absolutely wonderful.

Except, you know, sometimes it would be nice to at least get a card on my anniversary. :)

Anyway, today's a big day round here. Much celebrating of Bob is planned. So I wish you all vicarious cake and balloons and hamburgers and love. Enjoy!

How I Did it: The IPR

In record time too.

9:19 am: log-on to International Patient Registry, scroll down, and click the Join Now! button. Sa-weet. I love when things are that was easy to find.

9:20 am: fill out registry info. I will just say, though, that I hate when passwords are case sensitive. Gah. It's early. I've only one cup of coffee under the belt so far. Trying to come up with something creative...

9:21 am: email arrives with sign-in info. I'm official. Yes! I love being all official.

9:22 am: trying to log-in.

9:23 am: still trying to log-in.

9:24 am: *head-slap* I'm such a dork. I just registered. How could I have forgotten my sign-in so quickly? Completely blaming lack of coffee.

9:25 am: get SECOND cup of coffee. Eesh.

9:26 am: finally signed-in after successfully remembering who I am. Thankfully. Opening link for questionnaire.

9:27 am: a little confused over filling out of name. I'm answering for affected person, but is it asking for affected person's info or mine? Hmmm. Oh, well. Answering with BBB's.

9:29 am: so far, so good. It's asking for pretty basic info, all voluntary. Stuff like race. Age of dx. Dx. Meds. Doctors and location. Any health issues. Medical tests done. Piece of cake.

9:33 am: a small piece of cake, however, because I'm a bit fuzzy on dates and names. Blaming coffee again. It's okay, though, because they've included lots of unknown and other buttons as well as fill-in boxes. Loveee that.

9:36 am: that's it. I'm done. And I would have been done so sooner, had I more coffee.

And a donut. A donut definitely would have sped up the process.

Anyway, seventeen minutes, start-to-finish. Who can top that? Hmmm???? Just maybe drink more coffee first...

Patti's Journey

Cavernous angiomas suck. I know, I know. I sound like a broken record. But they do. What doesn't suck is the people I get to meet-esp the people I get to meet thanks to this blog.

I love the emails, the facebook comments-just when people reach out and say, "Hey, I'm fighting too."

It's pretty cool.

I want to thank Patti, who's letting me share this with you:

You can read more about Patti and her experience in this article at the American Association of Neurological Surgeons.

She also made this video. I love this. I do:



Thanks, Patti. And if anyone else out there has anything they'd like to share, I'd love to hear from you too!

The End Of The Road

When you leave our neuro's office, the procedure is to grab an appointment-reminder postcard and fill it out. Then you drop it into a box. Eventually it's mailed to you. Or that's how it's supposed to go.

At our last appointment the nurse escorted us out, waving us toward the postcards. "You know the drill," she said. "You're one of our most senior patients."

Um. Yes. We are. In a good way, I like to think. In that my BBB is creeping up on eighteen and he's been fighting his CCMs for a long, long time. Thank goodness.

But I have age on the brain too. So it tripped me. Being called senior. My fortieth is creeping up. Now, I've never cared about getting older. I've always been excited by it, actually. (Oh, hello. Three words: all-you-can-eat cake and ice cream.) But forty feels important. It feels like something that's supposed to be marked. It's always about the how, though.

Ushuaia

I knew I wanted to go as far as I could. It's forty. But Ushuaia wasn't in the cards. Then Hubby suggested Key West. To watch the sun go down on the country's southern most point. He's right. I should. I will. It's right.

Key West's Southernmost Point

Living with CCMs, oh hell, just living, seems to be about things always being more. More bills, more tests, more surgeries, always--ALWAYS--more. Especially when you think it can't be. So yeah, take me somewhere where I can't go more.

So I'm going. Maybe it's symbolic for me, maybe it's like some talisman- a way to say sorry, no more is something I can do. But mostly, I think it's about looking at the end of a road and knowing it's not actually an end, but a beautiful enough. So yeah, this senior is going. 

Angiomas Suck on Amazon!

To subscribe to us on Kindle now, you can go here. And as always, all $$$$ earned goes to charity. Yes!

One Piece Of Advice

I realize

now that people probably feel weird when I talk about my situation. I just want everyone to know that I'm not expecting you to say anything. I'm not expecting anything profound. Sometimes, I just want to talk about it. I'm not looking for a should to cry on.

Just, please. Don't tell me I am over-reacting. Them's some fightin' words ;)

--Calabresella, from her blog, Girl With a Pearl Size Cavernous Angioma.

You can find the rest of her post here.

I want to thank her for letting me blatantly steal her first paragraph and linking to her blog; I just thought her advice was that important to share. Watch them fighting words.

What advice to you have? As a friend? Parent? Spouse? Or patient? Leave a comment. I'd love to hear from you...

We Like

B5K75NACMDCX

Great news: Angioma Alliance's forum is back up.

Not-so-great news but no big deal: You have to reregister. Eh. It took us all two minutes. More than enough to pour ourselves a refresher cup o'coffee, so win-win.

Best news: Angioma Alliance has a sweet, new blog. Now that we LOVE.

International Patient Registry

Go, go, GO!!!! The International Patient Registry for those with CCMs. Just bring me back some donuts. Thx.

Some like this would be great. Ohhhh, pretty.

The Fishy Smell of Success

In the sizzling August heat, the backseat of our SUV smelled like something that had refused to bathe for several weeks had crawled in and taken up residence, and then upped and died. Turns out the source was Bob's Big Brother, who we’d just picked up from camp. 

“Tell me that’s not you that smells,” I asked.

"Nah. Not me," BBB said. "It’s the fish.”

I spun in my seat and Hubby hit the brakes. 

“What fish? You brought home a fish?” I squealed. Because yes, BBB is the kind of kid who'd take home a fish and forget to tell us. 

BBB frowned. “No. I caught him, but then he got loose. He fell into my sneaker and it took a while to get him out.”

“You took him out of your shoe, right?” Hubby asked.  "And then you set him free, right?"

“Back in the lake, right?” I asked.

My son waved off our questions. “Relax. I didn’t bring any fish home.” That’s when he reached over for his backpack and started to unzip it. “I brought the bait home.”

I turned to Hubby, who was frantically scrabbling with the window buttons. (Now that we weren’t moving, well, the smell was something.)

"Do something," I said.

"Like what?" he said.

“Maybe it would be best if we find a gas station,” I said, holding my nose. “You know, to buy an air freshener?” I looked over my shoulder at BBB. “We can dangle it from his ear or something until we get home. It might help.”

We ended up not stopping (and possibly breaking a few speed limits because of this.) It turned out the bait was actually rubber worms– big, sparkly, purple and neon green worms, which he delightedly wiggled over the front seat at me. He also brought home his target practice shots, a leather wallet, and a tiny canoe he’d carved by hand. While I’d never quite experienced him smelling so badly before, I’d also never seen him so happy or proud as I did at that moment.

We drove the hour and a half home with the windows rolled down. Breathing through our mouths. It was worth it. BBB’d spent his first week away at sleep-away camp. Sure, it was a special camp, for kids like him with special needs. But it was something we’d never thought he’d be able to do. Ever. 

What happened, what I never foresaw, is that he’d come home smelling like a fish. Or more, a rank fish. Because I didn’t know he could successfully fish. Or that he could shoot target practice or paddle a canoe. I never imagined he’d share he met a really cute girl named Heather. And I certainly never dreamed he’d come home so exhausted he’d sleep through the night for the first time in years. 

But sometimes life surprises us like that; it’s wonderful when it does.

That night, after a thorough showering, the heaving of his duffel bag and sneakers into the trash, and an airing-out of the car, Hubby and I tucked him into bed. 

“So,” I said. “You haven’t told us. What was the worst part of your week at camp?"

BBB lay in bed, his fingers folded against his chest, and frowned at the ceiling. “It would have to be the green beans." He sighed. “They were just disgusting.”

Point taken. Then I asked him then what the best part was.

His face broke out in a grin, and he sat up, excited. 

“For once,” he said, “I got to do stuff normal kids get to do.”

He was right. He did. 

Why do I bring this up, you ask? No reason, other than this year's camp survey and next year's application just arrived in the mail today. My initial reaction was oh, no, cha-ching. Especially as cha-ching is scarce round here thanks to the most recent medical bills. AACK. I might have even had a little meltdown. But then Hubby reminded me about the fish. And, well, okay.  What can you do? 


Hopefully, he'll have an even better time next year.

Let's Celebrate!

Happy Cavernous Angioma Awareness Day, Houston TX!

Shout-Out

Blogs (personal of any topic as well). Info. News, articles. Links. Past and present. Building a blog is haaaardddd work. So pass'em on. I'm needy. Please!!!!

Email me:
suckocity@live.com

Tweet me:
www.twitter.com/angiomassuck

Friend us:
Facebook

And if you look wayyyy down on the lower right side there's a little follow widget for the blog. Click that baby!

Got blog? Of any kind? Are you a Twit? Do you FB? Crosslink. Follow me. Suggest some friends. The more I link to, the more I crosslink to, the more I mention Angioma Alliance and other organizations working to research and help those with CCMs,  the easier it is for others looking for that info to find help.

It's all part of our evil plan for world domination. To conquer Cavernous Angiomas, that is. I swear. (But let's just say, were we ever to accomplish this, we firmly believe donuts to be the international official food of goodness. Just saying.)

Angioma Awareness Event!

Mayor Parker of Houston, TX has declared September 25th Cavernous Angioma Day!


Sa-Weet, Mayor. 


If that's your neck of the woods, celebrate by checking out the:
Angioma Awareness 5K Fun Run/Walk

Sabine-to-Bagby Promenade/Buffalo Bayou Walk
150 Sabine Street/Parking Lot H
Houston, TX

Saturday, September 25, 2010 from 9 am to 12 pm

Brought to you by Delia Candelaria and friends, this will not be your typical "walk in the park". We have recruited various sponsors and acquired generous donations to make the morning worth getting up so early! Reasons to come include door prizes, food/drinks, and lots of fun. Registration is $15 and includes a t-shirt. You can register by visiting www.awareness4life.myevent.com

And if this isn't your neck of the woods? Seriously? You need me to tell you? Donate anyway! Thank you.


Adding Mayor Annise Parker to the list of People Who Rock:

One Piece Of Advice

One piece of advice for parents raising a child with cavernous angiomas:

"Actually, I have three pieces of advice. One: When going for MRIs, make sure your child isn't wearing a certain brand of underwear that starts with an "H" and ends with an "S." If you get what I mean. A technician warned us they use metallic thread in some of their waistbands. Not sure it makes a difference, but, hey. 

The second is don't let them ever bring in a stuffed Pikachu. I have no clue what inside of it is metal, exactly, but something is. This we learned the hard way. It got sucked right into the machine. They weren't happy with us, either.

The third is be patient. With your kid, your spouse, but most of all yourself. Because you're going to screw up. Every parent does." -S, dad of son with multiple cavernomas.