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Emily

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About Me

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I'm 35 and I LOVE to laugh and meet new people who have interesting, exciting views on life.I have a rare medical condition called Chiari Malformation 1 which is a neurological disorder that effects the brain. I've had two brain surgeries for this, an explortory, spinal taps and other fun testing as well. This disorder causes the cerebellar tonsills to protude into the forman magnum (which is the opening at the base of the skull where the brain stem is located). Sometimes the bottom of the cerebellum (cerebral tonsils) protude into the cervical spine which was the case for me. I am now a paraplegic due to a constant detiorating process occuring in my spine. These conditions: Tethered cord syndrome, Elhlers Danlos syndrome, Syringomyelia(syrinxes in spine), High intercranial pressure, POTS syndrome, Raynauds Syndrome, Rare seizure disorders in addition to Arnold Chiari Malformation are ALL rather difficult conditions to manage combined, all are Rare Brain and Spine Disorders without A Cure. Though these conditions cause quite a bit of pain, I choose to live each day as best as I can which includes laughing a LOT!!! I used to study the Martial Arts and became a Green belt. I love the ocean, dolphins,sailing, taking pictures,traveling,and have loved fishing when I did it once! I also went on my ex-bosses mortorcycle 100 MPH and loved it! Couldn't do it again though- esp. not now! Wanted to train to compete in Karate and was a "gym rat"- even loved the protein shakes! I LOVE new adventures and look forward to all of the fun that life (and love) can offer!

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My Blog

Wheelchair Paragliding Start

http://www.youtube.com/watch?v=UGI8jMKX6eA CHECK THIS out!!!!!!
Posted by on Mon, 22 Sep 2008 19:44:00 GMT

Life and it’s winding turns!!

Sooo, I got my Tilite, as u can see if u check out my new pics..and my Nikon, so I've been pretty busy!  Happily, biissfuly BUSY!!!!! Went to my first camera group at Hofstra Univerisity, and THA...
Posted by on Sun, 14 Sep 2008 23:26:00 GMT

Class Of 99; Wear Sunscreen

http://www.youtube.com/watch?v=bwVVpwBKUp0 I LOVE this, it's so wise, I think you'll enjoy it also!!
Posted by on Sun, 08 Jun 2008 20:16:00 GMT

Class Of 99; Wear Sunscreen

http://www.youtube.com/watch?v=bwVVpwBKUp0 I LOVE this, and I think YOU will too!!!
Posted by on Sun, 08 Jun 2008 20:14:00 GMT

My manual w/c

Hi, everyone!!  I hope all is well with you!   Well....I'm in the process o f deciding (by tomorrow) WHAT to do about this wheelchair situation that I find myself in.  The guy...
Posted by on Tue, 03 Jun 2008 19:22:00 GMT

Women in wheelchair shoots alleged mugger

Monday, September 11, 2006 ..TR>   I stick by more story: people in wheelchairs are more dangerous than they look! Woman in wheelchair shoots alleged mugger  .. --> END HEADLINE --> .. -...
Posted by on Sat, 17 May 2008 23:23:00 GMT

MANUAL WHEEL CHAIR!!!

Ok....I'm having some problems understanding the complexities of getting a wheelchiair in this great country of ours!! I've been newly dx/para as of 12-28-07.  Yes, I have Chiari, and EDS and Tet...
Posted by on Wed, 14 May 2008 07:03:00 GMT

Interesting how a stranger can effect your life

Well, I’ve been having a pretty hard time lately.  Let’s see, I almost had to move out of my apt. by the end of June, find a wheelchair accesiable one (GOOD LUCK!!), possiab...
Posted by on Wed, 09 Apr 2008 09:15:00 GMT

Pain, pain, the joys of it all!!

Ok, here’s what I learned from having a CSF leak last week.  (It’s the fluid in your spine, and I "blew" a leak.  It leaked out of my spine and into the body). It all started whe...
Posted by on Thu, 20 Mar 2008 15:25:00 GMT

Ahhh 35

My 35th is a few hours away and it's troubling me.  I'm contemplating all that I've set out to do and haven't.  It never ocured to me that I wouldn't be able to do all that I set out to do.&...
Posted by on Fri, 01 Feb 2008 04:14:00 GMT