Sunday, October 31, 2010

Happy Halloween!

We here at Angiomas Suck wish you much candy and little in the way of nasty trickery.
Now you must excuse us...we're off to indulge in some Boston Screams!!! Mwahahahahaha!!!!


Thursday, October 28, 2010

Caring Bridge

Handy-dandy FYI for today: Banging your head on a desk burns 150 calories an hr. So go nuts. 

It's hard. Staying in touch with everyone. Whether it's a surgery, a medical crisis, or just regular status updates, it can be a huge challenge reaching out to all those you want to connect with. It seems no matter how hard I try, I never juggle it well.


But now there's a new way to stay connected--Caring Bridge. Through a website,  phone and mobile apps, text messages, and even Facebook, you can reach out to everyone you wish.

Does it work? I don't know. I haven't used it yet. But I plan to, and I'll let you know how it goes. In the meantime I figured I'd share it with you all too. It seems like it just might be an incredible way to disperse updates and reach out.

To learn more you can go here, and watch the vair cool video.

(A special thanks to Patti for letting us know about this!)

Monday, October 25, 2010

One Moment...

Yesterday--Sunday--it rained on us, Hubby and me. A cold, raw rainfall. The sort that makes your bones ache and hope sink away. Not that it mattered. Our hopes had sunk out of sight long before the drops began to fall. 
We'd spent the day trying to find a new house. Time is ticking, and we need to buy something (anything!) soon.  We'd started with an open house, and then driven around for what felt like an eternity (and I still contend truly was). Nothing panned out. Worse, everything was dishearteningly wrong. Except the rain. At least that came through for us.
I convinced Hubby to finally forget it and give up. The search. The rain. Our sunk hopes. Instead we stumbled into a local bakery, and oh, it was bright and warm and smelled so wonderful. We hunched over two pumpkin cream cheese whoopie pies that evaporated in no more than two seconds-how that happened, I just can't explain. Then we held hands and sighed. Happily. We'll find a house. Hopefully. But it's not every day that bakery makes pumpkin whoopie pies. Oh, no. They are even rarer than the perfect house.
Last week there was a contest. Smith Magazine was collecting stories about one moment that changed their readers' lives for a new book.  The Moment. GalleyCat--a website for publishing industry news--asked people to share their own particular moment at this Facebook link. Serious, silly, short, or a doorstopper,  they wanted to hear others' tales. A free book was even on the line for the winner.  (Check it out.)
I'd been thinking a lot about what I would write, if. Perhaps my moment would be when I found out about BBB's diagnosis. How that changed my entire world, but not before tipping it on its end and then punting it up to the moon and then beyond far past the stars into nothingness, only to let it splat to the ground. Perhaps.
I believe the more likely choice would be the moment, so many months later, when I stood in his hospital room and stared down at the city streets below, at the honking, the yelling, the scurrying crowds, and I laughed. Angiomas aren't a gift. They are nothing to rejoice in and nothing to giggle over. But there is a gift in discovering how simply unimportant yelling and honking and scurrying really is.  No, I'll never forget that moment. 
Which is why we ended up in a bakery. Which is why I figure eventually we'll find a house. Because it's not important. Probably I could have entered that moment. But then I wouldn't have been sitting in a bakery with my husband, holding hands and eating whoopie pies. And really, who needs that. 

So, what was your moment? And when's the last time you snuck off and did something truly important?

Sunday, October 24, 2010

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 FestivalSMcontest 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.)

Monday, October 18, 2010

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!

Friday, October 15, 2010

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...

Tuesday, October 12, 2010

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!

Sunday, October 10, 2010

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.


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. 

Friday, October 8, 2010

Angiomas Suck on Amazon!

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

Wednesday, October 6, 2010

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...

Tuesday, October 5, 2010

We Like


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.