Tuesday, May 31, 2011

Some Laughs for the Last Day of Ehlers-Danlos Syndrome Awareness Month

Thought my new camera would be here today, darn UPS! I *will* have lipstick swatches up ASAP.

Anyway, since it is the last day of Ehlers-Danlos Syndrome Awareness Month, I thought we could use a few laughs from fellow EDSer, Darlene Uggen:

"You might have Ehlers-Danlos Syndrome if..." 
by Darlene Uggen, ©1996

Do you think you might have Eherls-Danlos Syndrome?
Take this little test. (AKA, You might have EDS if...)

If you can make the sound of one hand clapping, by slapping your right hand against your right arm, you might have EDS.

If you can do an imitation of a pretzel, scratch your ear with your foot, while typing at the computer, you might have EDS.

If you have fragile, see-through skin that's 3 sizes too big, and tears if you look at it sharply, you might have EDS.

If you have days when you need a nap to rest up from the effort of getting out of bed in the morning, you might have EDS.

If you have hitch-hiker, or bug squasher, thumbs and fingers that won't hold things, you might have EDS.

If your body snaps, crackles, and pops, with every little movement, you might have EDS.

If your joints were jewelry, they would be Pop-Beads, you might have EDS.

If you have had 34 doctors give you 34 diagnoses, you might have EDS.

If you ran a fever and couldn't get the thermometer above 98.2, and the nurse couldn't find your pulse, you might have EDS.

If your dentist ever gave you so much Novocaine that his thumb was numb, and you could still feel everything, you might have EDS.

If you have ever amused your friends, or grossed out doctors, by showing off your "double-jointedness," you might have EDS.

If a pillow fight can result in cuts, bruises, scars, dislocations, and pain, you might have EDS.

If you have been called a Klutz for tripping over the patterns in the carpet, you might have EDS.

If your back, hips, shoulders, knees, elbows, and other joints, go out more often than you do, you might have EDS.

If you ever had a school report card that said you were fidgety, uncoordinated, lazy, under-developed, and a complainer, you might have EDS.

If your medical history looks like the Index of a Medical Text Book, you might have EDS.

If someone else's "intolerable pains" would be a relief to you, you might have EDS.

If your OB/GYN complications were a movie, it would be a horror movie, you might have EDS.

What do: Acid Reflux, Mitral Valve Prolapse, Joint Pain, Arthritis, Scoliosis, joint dislocation, cramps, weakness, hyperelasticity, hypermobility, TMJ, fibromyalgia, endometriosis, chronic fatigue syndrome, dysmenorhea, migraines, low temperature and blood pressure, and misdiagnoses have in common? If you know, you PROBABLY have EDS.

&, as if helping us laugh wasn't enough, Darlene also wrote this poem to help those without our condition understand that we are not "wheelchair bound":

"My New Set of Wheels"
by Darlene Uggen, ©1999

 There you stand, and I see you stare
Thinking, poor dear, she's stuck in that chair.
But I'm not sad, I'm very happy because
I haven't forgotten the way it was.

You'd say, "How about a trip to the zoo?
A walk in the park will be good for you."
I was thinking tomorrow, I'll be a wreck,
From my aching feet, to the pain in my neck.

You'd want to go shopping, all over town.
I was thinking but there's no place to sit down.
For you it's a snap, just to go to the store.
But for me the ordeal was more of a chore.

Now I can go wherever I please
I can shop in the mall with newfound ease,
Do all the things that have to be done,
And even go out and have some fun.

So, do you want to know how it really feels,
To be sitting here between these wheels?
Can you remember back that far,
When you got your very first car?

Well, that's how these wheels feel to me.
They don't hold me down, they set me free.
So, don't think all those pitiful things:
These aren't wheels, I think they're my wings.

Wednesday, May 25, 2011

May is Ehlers-Danlos Syndrome Awareness Month

Unfortunately, the camera my friend loaned me doesn't seem to work with my SD media card, so, until I get a new camera, my lipstick swatches will have to wait a bit.

In the meantime, I'd thought I'd do a post on May being Ehlers-Danlos Syndrome Awareness Month. EDS is a group of genetic & congenital connective tissue disorders that is woefully under-diagnosed. Many people, especially adolescent boys, are not diagnosed with Vascular type EDS until autopsy following a stroke or spontaneous aneurysm.

This is the best video on EDS Awareness I have seen yet:

A Medical Zebra is someone with a rare, or under-diagnosed condition, and comes from the saying, "If you hear hoof-beats in Central Park, think horses, not zebras."

ETA: If you think you might have EDS, check out www.ednf.org for more info on types, symptoms, genetic testing & lists of specialists. 
ETA again just to make sure that British YouTuber, got proper credit for her phenomenal EDS video.

Friday, May 20, 2011

Brief Intro & Test Post

So, I'd thought I'd try out a test post to see how well it works.

Unless you are a Zazaloff*, then it may not be obvious to you that my online name, Miss Jupiter, as well as my blog title, The Girl With The Shapely Wheels, are references to a radio comedy sketch that Stan Freberg did in 1957 on "The Stan Freberg Show."
I'm not sure how to imbed the archive.org audio player, but Miss Jupiter first appears in the 3rd episode listed here:

For those who are Deaf/HOH, my 1st YouTube video has open captions for the dialog for the original Miss Jupiter sketch (there is one mistake where Miss Jupiter, played by June Foray, says, "You know it, they're shapely, & I accidentally captioned it as "You know it, Big Boy." D'oh!) :

*"Zazaloff? What kind of nationality is that?"
"Swiss. That way we don't offend anybody."
Zazaloff = Freberg Fan

So, I am in process of trying to find a decent camera, & I hope in the near future to use [at least part of] this blog to catalog lip swatches of lip colors from indie makeup companies.
You can always tweet me @MissJupiter1957