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November 10, 2008


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Ooh. Looks like TypePad may finally be remembering me.

Sooooo, OSM. About this dancing you used to do.... Really? You danced? I never so much danced as made vaguely rhythmic spasmodic movements while music played. Not a thing of beauty. I find the notion of people with EDS who ever could dance well (and I know a few) to be astounding. Like a super power. When you put your little foot, your little foot, your little foot right there, it actually went there and not someplace else?

Im not going to say that I am never in denial. Denial is my first line of defense against pain. It works best in the company of Distraction. And I am forever thinking I can do silly things like open doors, though my shoulders have been telling me otherwise for over a decade. But it isnt my fault that there is a national conspiracy to make doors heavier and harder to open. It ranks up there with the conspiracy to make the print tinier and lights more blinding.

Of course, at home, I have no problem with the doors. They are pretty easy. Its only when Im out and about that I am reminded of my problem with doors. And I find that my little problem with opening just about any container is a great conversation starter, for surely I would perish of thirst if some notion of Self preservation prevented me from asking random strangers to please open whatever bottle I am holding.

Anyways, this has me wondering what concert you went to with Grace and why there wasnt accessible seating. Youd be surprised how many places have hidden elevators for use only by those who ask. Did they actually not have accessible seating, and are you going to be complaining? Because, really, you should complain if there was no accessibility. And if you are the factor stopping yourself from having safe access, well, I think you know who you need to complain to. Though I hear she is pretty deep into denial.

One Sick Mother

The concert was So you think you can Dance?

Im cooking dinner now, so cant fully respond, but I thought you would get a kick out of that...



Testing 123... Yay! I was able to comment again... * does a ditsy *.

What you are saying, is so true. I guess, the mind locks things up when you are feeling better because you dont need to think about them at that point in time. It makes one feel so good to be able to use ones body that you start to act like a naughty child that doesnt want to revert to difficult days, screaming I dont wanna!.

From one topic to the next...It still confussles me though why Marfans and EDS is so different yet so similar... I know that the one has to do with cologen and the other with fibrilin, but a lot of times it seems that the result is pretty much the same...

Maybe its just because I present so largely in terms of musculo-skeletal and joint laxity problems. I wonder what would have to be different for them to dx me as EDS rather than MFS... Is it because MFS has more to do with veigns arteries in terms of aneurysms and rupture and that EDS has more to do with organ aneurysms and ruptures...

In a way, MFS is similar to Vascular Type EDS...except as mentioned before, the location of ruptures. Which brings up a good point. You can have EDS without Cardio-Vascular but you cant have MFS without Cardio-Vascular. MFS without it is something called Marfanoid-EDS...? am I right?

At any rate, apart from the ouchies, I am glad you enjoyed the concert ;D.

The one thing I also wanted to say in my previous comment, * Glares at TypePad *, is that some days, the BPD Manic Monkeys make it difficult to recognise wether I am grieving or just un-balanced at that point...heh.

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