Wednesday, June 30, 2010

EDS Today in the Chase Community Giving Challenge

I know this blog is about my dolls but I'm taking a time out to talk about something that's important to me and a lot of my friends.

I have Ehlers-Danlos Syndrome which is a rare collagen production disorder which is also genetic. It causes many things...for me it's caused my joints to dislocate, my skin to tear, my blood vessels and organs to malfunction and potentially rupture and for my vision to become severely impaired.

I can no longer function without the help of crutches, three finger splitns, two wrist braces, two knee braces, two ankle braces and tons of auxilary visual and computer equipment.

There is very little research on EDS and there is no standard treatment and no cure. I have been the CT State Captain of EDS Network CARES ( for a few months now. EDSNC won in the last Giving Challenge on FB and now we've partnered with another research organization called EDS Today. The money will go towards further developing two studies that are currently under way, one of which I may be participating in myself.

Please click on this button: and follow the instructions to vote. Your vote could help save many lives, including MINE.

♥ Thank you.

Who goes there?

I haven't been around in quite a, friends and life have prevented me from updating my blog (along with being forgetful and lazy) but there has been no wavering in the resin obsession of course!

The Mina version of Nuri didn't work out. After months of having her head stashed on a shelf or in a box full of other crap...I got my Garden of Dolls PpoPpo head restored and Nuri's back in her original form. I also found out they're no longer being made and even the woman who created her is selling her own doll!!! I almost bought it to put on my heavily modified body but then Buff from DoA said that she can make my girl like new again! She did an awesome job save for a tad of pink stuck on the lips but I wanted to keep their original shape. Now she has a natural faceup with worried eyebrows and her trademark star by her left eye. I took photos of her and she looks like a 13 year old stuggling with fitting in, especially as a teen with a disability. I'll have pics later.

Artemis is exactly the same...I haven't changed her. No need to...except that after a year of looking, I finally happened upon a sleeping faceplate with the FL faceup. It's coming from Poland I think so she'll finally take a nap...which goes well with her new pajamas I got at the mall a few weeks ago.

Carleigh's also remained unmodded...she will eventually be getting a faceup from Leah Lilly as her FL one is chipped on the eyebrow, cheek, and lips by me dropping her or by her getting knocked over. This kid is spoiled rotten with Re-ment and Ruby Red Galleria shoes :)

MACCHIATO. Of course...I'm nuts over her STILL. She now has THREE wigs and is now waiting for her new Mimi's Stuff clothes and shoes to come from England. Almost all of her clothes are custom made now and I am thinking of doing a closet cleanout as she has SO MUCH stuff just for one Puki!

And now...the good kind of spam that everyone enjoys :D

New DancingBee Dress

Shootin' the Breeze