Angiomas Suck.

Make no mistake: Cavernous angiomas suck. But your life, well, it can still be very okay.

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Wednesday, July 20, 2011

Vacation!

Posted by Kelley at 2:36 PM No comments:

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Angiomas Suck.

Life Doesn't Have To.

Now Available On:

Amazon for Kindle and Kindle Apps!!

Who Am I?

Welcome. My name is Kelley, and I'm a mom (to Bob and Bob's Big Brother), wife (to Hubby), writer, and lackey to three cats. I like donuts just a little too much.

My oldest son, BBB, was (finally and correctly) diagnosed with Multiple Cavernous Vascular Malformations at the age of seven.

It sucks. The surgeries. The seizures. The unknown. But somewhere along the way, I made a decision--I wasn't going to let our lives suck because of it. If anything, I thought maybe, just maybe, we could even make the world a tad better because of it all.

This blog is part of how I'm trying to do that very thing.

What IS This Place?

A blog.

It's just a blog.

But it's also about how I refuse to let those crappy cavernous angiomas take over. So I post stories. I post how I'm trying to look on the bright side. Because I am, I'm trying to find a bright side.

Um, What's A Cavernous Angioma?

Call'em whatever you like: cavernous angiomas, cavernomas, cavernous malformations, cerebral cavernous malformations, cavernous hemangiomas. The names are all interchangeable; they all mean a clump or clumps of abnormal blood vessels in the brain or spine; they all suck.

Yes. They do.

Looking For More Info On Angiomas? Or Want To Connect With Others?

About CCMs at Angioma Alliance
Angioma Alliance
Angioma Alliance Forum
Health Boards forum--(Cavernous Angioma board)
Angioma Alliance newsletter-summer 2010
Brain Injury Success
Neuroscience Forums
Cavernoma Alliance-UK
CCMs-Boston Children's
CCMs-Brain-surgery.com
CCMs-Brainaneurysms.com
CCMs-Mayo Clinic
CCMs-MGH
CCMs-NIH
CCMs-Right Health
CCMs-Stanford
CCMs-WebMD
CCMs-Wikipedia
International Patient Registry
DNA/Tissue Bank
Neurological Focus Issue on CCMs
Hannah's story for Reader's Digest on FB
Patti's Story
Patient Advocacy on YouTube-thanks, Patti
Patti's Journey on Youtube
Grace Doran's story on YouTube
Fasudil Drug Study
Statin Research

How Can You Help?

Easy.

Know of any good links, websites, or news? Email me at swanka (at) live (dot) com.

Have "One Piece of Advice," a story, or just want to share a thought? Email me at swanka (at) live (dot) com or leave a comment.

Link back to me. Link back to other wonderful sites such as AngiomaAlliance.org. Because the most important thing is that we spread the word. Most people know nothing, absolutely nothing, about angiomas. And you can't defeat something that you don't even know exists...

Want To Donate?

Of course you do. And we families struggling to fight against brain angiomas need your help. To learn more, go here and here. Interested in donating? Then go here and here. You can also check out the Firstgiving widget below or follow this link to my day job. Maybe even consider pick up a copy, or fifty, of any publication where my writing appears. I donate a portion of all my payments and royalities earned, so you're helping me to help others by reading. I thank you.

Fundraiser Events!

10/12 Zombie 5k Run for Awareness, Milford, MI
6/12 Jump for Zane
3/12 3rd Annual Fun Run/Walk, Dallas TX
2/12 MadoroM Charity Wine Auction, Bakersfield CA
8/11-Macy's Shop For A Cause
8/11-Poker Tournament
7/10-Allentown, PA Flapjack Fun
8/10-Plymouth, MA Party & Silent Auction
9/10-Ogden, UT Walk
9/10--Houston, TX Walk/Run Fun
Ongoing-Book-It-4-Brains

People Who Rock

People Who Rock

Disclaimers and All That Legal Blah Blah Stuff

Hi.

I'm not a doctor. I'm not a lawyer. There's a few editors who might argue I'm not even a very good writer. (Though I like to think I might be an okay mom and wife, but, well, you know. It's all subjective, right?) So, don't take my word for anything, especially when it comes to medical issues. It's all just my opinions, thoughts, and personal experiences.

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Blog List

T.B.I. To Be Invisible

The MRI hassle
7 months ago
Thankful for everyday!

6 word story
11 years ago
Heidi's Spot

12 years ago
Angioma Alliance Blog | News and Information about Cavernous Angioma

2012 Scientific Meeting Update–Moving Towards a Cure
13 years ago
The Chronicles of a Rebel Brain

Day 3 - Trouble Begins - New Year's Eve
15 years ago
The Care and Feeding of a Cavernous Angioma

15 years ago
brainstem cavernoma

Gamma Knife Surgery
18 years ago
Angioma Alliance | Facebook
Cavernous Angioma and Children - Angioma Alliance's MySpace Blog |
The Life of Baby Zeke
Post Surgery Maddness Cavernoma : I The Crazy World of Post-brain Surgery Story & Experience
Reading Brain Injury
Cavernous Angioma | Facebook
Blogs | The Project 2020
Girl With a Pearl Size Cavernous Angioma
Incompatible Browser | Facebook

Books On Angiomas

Struggle To The Summit-memoir
Since I Was Dead-memoir
Out Of The Blue-memoir
Slow Dance-memoir
Brain Storms-nonfiction
Dipped Into Oblivion-memoir
The Unstoppable Life-memoir (AVM)

Patti's Journey

The Project 2020

Are You Fun To Be Around? from 2020 project on Vimeo.

Link Love

Memory Writers Network

Beyond Kubler-Ross, memoir as a new language for grief
3 weeks ago
Excerpts From Nonexistent Books

A Farewell to NaNos
1 year ago
Janet Reid, Literary Agent

In Memoriam: Janet Reid
2 years ago
thursdaybram.com

A new Tu Bishvat zine (yes, another!)
3 years ago
The Clarity of Night

Adjust contrast of a pdf free
8 years ago
Behler Blog

Get Back to Work!
8 years ago
The Rejectionist

call for submissions: african-diasporic herbal
9 years ago
leftbrainwrite

Bearing Witness--The Wall
9 years ago
Madelein Eirwen

Emotions
10 years ago
The Kindle Blog Report

Website Review: Hookah Shisha
11 years ago
De's Stories

I Write because it Relaxes Me - Cindy Freland
12 years ago
Teen Word Factory

Measuring the Value of Promotional Marketing
13 years ago
THE NEW LITERARY AGENTS

A New Home for This Blog
13 years ago
Kara Mustafa

kara-mustafa
13 years ago
Smart Cents Mom

In to Win Wednesday Giveaway Roundup 5/9
14 years ago
Of Home and Muse

Obsessing Over Dust Ruffles
14 years ago
Miritsu's Journey

Movie review: Angel
15 years ago
Lost and Delirious: Incoherent Thoughts Of A Writer

I'm Back!!!!! For Anyone Still Out There - An Update
15 years ago
Wonderfully Awesome Stuff

Awesome Agent Contest!
15 years ago
Gooblink

Barber in a Box
15 years ago
Notations

Remodification What?
15 years ago
H. L. Dyer's Weblog

Word Association
16 years ago
How Publishing Really Works

I'm Sure You Know This Already, But I've Moved
16 years ago
The Spitfire Grill

Art?
17 years ago
Plotting Worlds - Blog
Garth Stein :: Official Website :: The Art of Racing in the Rain
Elvis, Elves, and Chocolate Chip Cannoli
whereismyslingshot.blogspot.com/
Legend of a Freak
Novelist Who Gets No Love...
Maggie Lyons
pointless-drivel.com/
Behler Blog
Natasha Bennett's Blog
A Writer's Edge ...
Timothy Trimble - Words and Worlds
The Write Yarn
K.S. Brown Books
Lori Brighton
Sarah E. Moffett
Winterwriter writes
Irissel's Inklings
Words to paper...
Life in Retrospect
MOTHER WOULDN'T LIE!

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