Angiomas Suck.

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

Showing posts with label Happy Hanukkah. Show all posts
Showing posts with label Happy Hanukkah. Show all posts

Tuesday, December 25, 2012

Happy Holidays!

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Labels: Happy Hanukkah, Merry Christmas

Tuesday, December 20, 2011

Happy Hanukkah!!!

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Thursday, December 2, 2010

We Wish You A...

Have a wonderful holiday, everyone!!!
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Angiomas Suck.

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.


Search This Blog

Blog Archive

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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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