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Time:09:54 am
I no longer have a paid LJ account - but you need one to set up a feed for external sites. Can anyone help me put one together for badlydrawntrex.tumblr.com?
xo
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Time:12:43 pm
Oh, if people are going to follow http://syndicated.livejournal.com/scarydan_tumblr/ then comment on the actual tumblr posts please - I won't get comments on the LJ feed. Or will I? I dunno. But if you comment on the tumblr it makes me look more popular than I really am.

Also, just so that everyone knows, and I've no doubt that virtualwolf and kungfupolarbear will be relieved - I bought an organ off eBay for $10.
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Subject:mindless twitter crap for the day
Time:11:16 pm

  • 08:42 hating mr. alling. #

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Time:09:32 pm
This is a re-post of information from my friend Karolyn.

"In 2003 I was diagnosed with Ehlers-Danlos Syndrome, which involved a very scary lecture on my prognosis and little else in the way of medical advice. Very little information was available and finding others who had this (let alone doctors who would be able to effectively treat me) was an impossibility. In the years since, EDS has raised its profile in the medical community a bit but still remains relegated to outdated information and stereotypes that lead to misdiagnosis. The disease is estimated to affect 1 in 5000 people, yet only 10% of those are diagnosed in their lifetimes. It's maddening, to say the least.

For the past year I've been working hard to establish local treatment centers, connect patients in the tri-state area and educate both doctors and patients on how to handle each other effectively. It's an uphill battle and I'd be lying if I said I was optimistic about its long-term effect. Still, this is what I devote most of my energy to these days and I'm proud of that effort.

One of our persistent issues is obtaining accurate media coverage. There have been a handful of features over the years which showcase the disease as something that manifests itself visually and perpetuate the stereotype that we're all circus freaks who look vastly different from the general population. SOOOOOOOO not the case. This type of coverage often makes it considerably more difficult to get diagnosed and/or treated. Thankfully, this is altogether different. This is one of the first shows I've seen that gives a good depiction of the diagnosis process for many EDS Patients. Lynn Sanders, the woman featured in the video, is a powerhouse as far as EDS advocacy goes and I'm quite thrilled this is out there.

Medical Mystery Diagnosis: Ehlers-Danlos Syndrome - http://www.veoh.com/videos/v17122513nK5XHXFC

Short excerpt: http://www.youtube.com/watch?v=m9rx2n9zw2c

I would really love it if you could watch/tell a co-worker to watch/talk about it to anybody/pass the link around/ANYTHING. It needs a more prominent place on peoples' radars if we're ever going to make any headway in treatment."

It's not quite on the same scale as the digestive issues my mother has had, but the popular reaction is the same - misdiagnosis, disbelief, derogatory attitudes in restaurants. There's a lot of medical shit out that that we don't know about, and so many doctors willing to just fob everything off with antibiotics. There's pretty much no EDS support in Sydney that I've noticed. I don't know a lot about EDS other than what Karolyn's told me or what I've read, but it can be pretty debilitating, and incredibly varied as well - good days and horrendous days.

If you can pass this on - even just the doco link rather than Karolyn's blurb - that would be great. If you read it, thanks for reading.
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Subject:mindless twitter crap for the day
Time:11:07 pm
  • 08:57 @zemonsta SIT IN THE CHAIR AND BE GOOD NOW. #
  • 09:39 If I fall asleep at my desk this morning I will be so unsurprised. #
  • 09:51 @VirtualWolf mostly boredom not staving off the tiredness. I even went to bed at 9:30 last night! what's up with that!? I had 9 hours sleep! #
  • 10:55 @upandatthem @VirtualWolf yes, I'm totally with you both. YES. #
  • 11:21 I'm really bummed that I missed Deborah's wedding. :( #
  • 12:29 @CharmWhite i tried your code, dreamhost are charging me US$42 for two years! #
  • 12:37 @CharmWhite it's accepting the code and giving me a discount, but not that large. eh, I can't really afford/justify anyway! #
  • 13:44 @smoemeth I don't know when I'm going to be in that hemisphere again :( #
  • 14:55 two hours until hometime. ugh. #
  • 15:02 @roborobyn good luck! if HR don't know about that inter office relationship by now, then I don't know what to do. #
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Subject:mindless twitter crap for the day
Time:11:06 pm
  • 08:03 @rideon ahhhhhhhhhhhh ethiopian! <3 #
  • 08:22 Today's plan: Shower. Breakfast. Ironing. Ironing. Ironing. Sigh. #
  • 16:31 This young'un was cast by the man who did Press Gang and Coupling and wrote 'Girl The Fireplace' and 'Blink'. No complaining, okay? #
  • 17:13 @smoemeth @rachaelsage I just uploaded pics from London shows to flickr - flickr.com/photos/scarydan/sets/72157612080249841/ #
  • 17:23 why, WHY does it take me so damn long to like albums by some artists? i'm for the first time listening to AND ENJOYING 'in rainbows'. #
  • 17:34 @akte geez, finally. #
  • 17:53 @snape i know, right? #
  • 20:03 @crawlspace I'm sorry, but it doesn't get any better than 'Paper Planes'. That song is awesome every. single. time. #
  • 21:00 @crawlspace I was working for Beggars Group when the album was released. I've heard it. 'Overkill' is possibly the word. #
  • 21:01 @crawlspace (seriously, I can't listen to Jimmy or Boyz at all, again, ever) #
  • 21:06 @crawlspace Bamboo Banga sounds great, but is too long for what it is (unless there's a radio edit out there) #
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Subject:mindless twitter crap for the day
Time:11:06 pm
  • 08:52 @_gnosis Wow. Me neither. #
  • 09:03 Apparently the next actor to play The Doctor is being announced tonight England time. Eep! #
  • 09:04 @kristinhersh ah, bees. <3 #
  • 11:57 @johnlacey Yeah, totally quiche. It's even spelled the same. How do you get 'nitch' from 'niche'!? #
  • 12:05 @smoemeth wow. just...WOW. #
  • 12:08 @wojsvenwoj twitter summaries are pretty much all you'll see on my LJ these days... #
  • 15:20 @_gnosis Any money I'm going to both love it AND hate it. God. What if I just hate it? What'll I do then? #
  • 15:22 Man, it's impossible to buy a Wii anywhere without preordering it. #
  • 15:30 @emesser well, that's at Castle Hill. I think it's a fair assumption that it's gonna be everywhere though. Get him/her to call ahead. #
  • 18:02 man, 4 pages over into the next blurb price bracket. but which 4 to cut!? #
  • 18:18 other book was 4 pages under. ugh. i'd make an ironic joke, but i just fleshed the book out with pics of alanis. #
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Subject:mindless twitter crap for the day
Time:11:06 pm
  • 08:31 @smoemeth ooooh have fun. get them to make sure they don't leave any awesome behind. #
  • 08:53 At work. There are 6 other people here, and no incoming mail. #
  • 09:09 @_gnosis what? it's nice out! (or it was when walking to/from bus stops). #
  • 09:31 @_gnosis maybe one of us has our own personal microclimate then :) #
  • 09:32 @skytumblingdown that happened to me at the british museum. it's disturbing. #
  • 09:35 co-worker is back. man. #
  • 10:02 why do people wear hats inside? i thought it was a huge faux-pas to do that. #
  • 10:08 oh, it was a huge faux-pas in the 50s. i wish i lived in the 50s. #
  • 10:45 @marcoandante damn that sounds good. #
  • 10:46 why am I stuck at work when everyone else on twitter seems to be talking about how great the bath they just had was? #
  • 10:50 New Year's Resolution: This year I'm going to learn to knit. #
  • 11:00 @CharmWhite oooooooh thank you! #
  • 11:29 I'm hungry. Is it lunch yet? #
  • 11:45 @CharmWhite ohhhhhhhh I can't remember the last time I had a bakery sausage roll! #
  • 12:36 What kind of place am I working for when the end of month reports are due before the end of the month!? #
  • 13:27 Coworker just commented on how quiet it was with a lot of staff away. I wonder if she knows how quiet it'd be if I duct tape her mouth shut. #
  • 13:37 Dammit why does the numlock key have to be on the keypad section so that I keep bumping it off all the time when I'm typing numbers. #
  • 13:47 @miklos I converse, thank you, not just talk contextless inanities for the sake of it. :) #
  • 13:55 @miklos I would for my case too, but I don't announce unprovoked that I've left my cardigan at home, or that the budgie bit me this morning. #
  • 14:10 @miklos budgerigar. a small bird. #
  • 15:03 I never really used to listen to later Throwing Muses, now I'm stuck on a Limbo/Red Heaven loop. And LOVING IT. #
  • 15:15 @cathedralheat Limbo I only got on not-vinyl last year so that's why it took a while, but Red Heaven I have no excuse for. #
  • 15:22 @cathedralheat I can't imagine Rosetta Stone or Carnival Wig live. #
  • 15:52 @rideon @shangsm - it starts airing here this year. I can't wait. #
  • 16:14 holy crap, what's this song called 'liquid diamonds'? who's it by? 'tori amos'? who's that? #
  • 16:25 @snape it's on foxtel. i watched the first 6 episodes. it's hideously awful! #
  • 16:31 @snape I've never read the book. But if the TV series was doing it justice then...I'm never going to read it. #
  • 16:57 augh NIN presale in 3 minutes. HAUHGHLGHGLGHLGHLGHLGHABAHAUHAHLGUHALGHALGUHL #
  • 17:02 wow, were there ANY tickets available!? #
  • 17:06 have tickets! whoo! nin! #
  • 17:53 @CharmWhite I didn't get any tickets to show up until 5 minutes after the sale started so...I dunno. and this was just the NIN presale. #
  • 19:00 @CharmWhite oh my god. that's just... WOW. all that on a sandwich? #
  • 22:02 @upandatthem I'm thinking about going to mac route next time myself... #
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Subject:mindless twitter crap for the day
Time:11:07 pm
  • 00:17 @upandatthem what, for real, I so wasn't paying attention... #
  • 00:18 man, I'm so over 2009 already. (happy new year everyone! xox) #
  • 14:42 Dude Where's My Car is a SERIOUSLY underrated movie experience. #
  • 16:14 Happy New Year all my East Coast US peeps! (and to the West Coast ones too, just....early). #
  • 16:47 @upandatthem at last, someone who shares my sentiments. you should pretend you haven't watched it for your 101 project. people should know. #
  • 18:42 geez I think my CD drive is having a hernia or something. #
  • 19:24 my head feels like it's full of glue. #
  • 20:46 the second half of 'Red Heaven' is my new favourite Throwing Muses record. #
  • 20:50 also, while still on Throwing Muses - I SEE THEM IN A FORTNIGHT *meep* #
  • 20:54 that looks like a carnival wig. and two shiners. AND TWO SHINERS. that looks like your left hand. don't love me. DON'T LOVE ME. #
  • 21:08 dovey, dovey, I'll take you down. Remember - I see behind me. #
  • 21:10 I wish I could play guitar. #
  • 21:40 @upandatthem SERENITY! *sigh* Those were good times. #
  • 21:59 just found out the Melanie show I was at in London is on DVD! yay! #
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Subject:mindless twitter crap for the day
Time:11:11 pm
  • 07:00 hi @terami! welcome to twitter (at last! :D) #
  • 08:31 @_gnosis all the scientists are saying 'our clocks are too accurate', but I think it's the other way around. #
  • 08:44 @_gnosis time as a unit of measurement isn't natural - we can't say 'clocks are too accurate' because a "second" doesn't really exist. #
  • 08:44 @_gnosis (it's hard to discuss things with long words in twitter!!) #
  • 08:48 @VirtualWolf some of us started working 18 minutes ago. slacker. #
  • 09:58 @roborobyn oh no :( sending get well vibes! #
  • 11:19 @shangsm it took me a few episodes to get used to it, but I really like it as a change from high school to college. #
  • 11:20 @upandatthem I haven't had those in years. Now I'm craving. Thanks. #
  • 12:19 @upandatthem yes! the third time is the ABSOLUTE CHARM! #
  • 14:48 @terami just remember that the classy people always arrive a little late to the party. #
  • 15:19 @terami because nothing says class like dead reptile on your feet. #
  • 17:40 @crawlspace @emesser GET A ROOM! :D #
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