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Spike's Bitches 48: I Say, We Go Out There, and Kick a Little Demon Ass.

[NAFDA] Spike-centric discussion. Lusty, lewd (only occasionally crude), risqué (and frisqué), bawdy (Oh, lawdy!), flirty ('cuz we're purty), raunchy talk inside. Caveat lector.

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omnis_audis - Mar 18, 2014 12:42:51 pm PDT #9916 of 30002

omnis, pursue. That's an order from a shy woman who can use M-16. - Shir

(sorry ahead of time for the asscaps)

OMG!OMG!OMG!!!!!!!

OK. Head about to explode (from good)! Just got off the phone with clinical trial folks. It's been weeks of phone tag. The info on the website that I found wasn't complete. THERE IS A DRUG! The study is a double blind one. They need 50 folks for the study. They currently have 13. Yes, that is how rare this damn disease is. They are hoping to start in the fall, if they get the 50 folks. Will involve flying to Washington DC and testing at NIH. OMG!!! I need to get a genetic test (I've only got the muscle biopsy from when I was an infant). So. Now we need 36 more people with the RYR1 gene mutation.

OK. Gotta try and work with this info buzzing in my head. My hands are shaking! Crazy!!

NoiseDesign - Mar 18, 2014 1:11:27 pm PDT #9917 of 30002

Our wings are not tired

That's amazing news omnis!

sj - Mar 18, 2014 1:16:44 pm PDT #9918 of 30002

"There are few hours in life more agreeable than the hour dedicated to the ceremony known as afternoon tea."

Omnis, that is wonderful news! I hope the clinical trial is a great success.

I had my last iron infusion today. Maybe now I can stop having bruised arms for a little while.

billytea - Mar 18, 2014 1:23:38 pm PDT #9919 of 30002

You were a wrong baby who grew up wrong. The wrong kind of wrong. It's better you hear it from a friend.

Awesomeness!

My hands are shaking! Crazy!!

They will be happy to have you, you're such a high achiever that you're presenting side effects even before you started taking the drugs.

omnis_audis - Mar 18, 2014 2:00:55 pm PDT #9920 of 30002

omnis, pursue. That's an order from a shy woman who can use M-16. - Shir

Ha! You crack me up BT!!

Scrappy - Mar 18, 2014 2:01:15 pm PDT #9921 of 30002

Life moves pretty fast. You don't stop and look around once in a while, you could miss it.

Hooray, Omnis!

billytea - Mar 18, 2014 2:02:16 pm PDT #9922 of 30002

You were a wrong baby who grew up wrong. The wrong kind of wrong. It's better you hear it from a friend.

When you report it, make sure you call them "jazz hands". It's important to get the medical terminology right.

Zenkitty - Mar 18, 2014 2:44:03 pm PDT #9923 of 30002

Every now and then, I think I might actually be a little odd.

omnis, that's wonderful!

DCJensen - Mar 18, 2014 2:53:35 pm PDT #9924 of 30002

All is well that ends in pizza.

Congrats, omnis.

I hope you get the good drugs in the double blind.

omnis_audis - Mar 18, 2014 2:55:20 pm PDT #9925 of 30002

omnis, pursue. That's an order from a shy woman who can use M-16. - Shir

Haven't gotten in the study yet. They still need folks. And yeah, I hope I get the real deal too! And hopefully the side effects are nominal/non-existant.

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