LGMD Chat

ken-t (Jun 27, 2008 9:04:26 PM)
welcome all who come, and im back, had a wonderful time in texas...going back.....

ttroy350 (Jun 27, 2008 9:40:45 PM)
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ken-t (Jun 27, 2008 9:41:10 PM)
hello troy

ttroy350 (Jun 27, 2008 9:41:21 PM)
hi there

ken-t (Jun 27, 2008 9:41:30 PM)
and welcome to chatt this fine eve...you new to these chats?

ttroy350 (Jun 27, 2008 9:41:44 PM)
yea i am new

ken-t (Jun 27, 2008 9:42:44 PM)
well, i shall begin then....my name is ken, yep im this here host, and i have limb-girdle md and am married

ken-t (Jun 27, 2008 9:42:54 PM)
oh and im 41

ken-t (Jun 27, 2008 9:43:14 PM)
and was diagnosed 14 years ago?

ken-t (Jun 27, 2008 9:43:19 PM)
ago

ttroy350 (Jun 27, 2008 9:44:19 PM)
i actually have F.S.H.D. I was diagnosed 2 years ago. I just got my password and wanted to try it out. I know I am in the wrong room. sorry

ken-t (Jun 27, 2008 9:45:18 PM)
noyour not in the wrong room

ken-t (Jun 27, 2008 9:45:33 PM)
for everyone is welcome, no matter the diagnose

ttroy350 (Jun 27, 2008 9:45:54 PM)
ok thanks

ken-t (Jun 27, 2008 9:49:27 PM)
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ttroy350 (Jun 27, 2008 9:50:22 PM)
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ttroy350 (Jun 27, 2008 9:50:35 PM)
sorry about that

stephh1 (Jun 27, 2008 9:51:09 PM)
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stephh1 (Jun 27, 2008 9:51:13 PM)
hi all

ken-t (Jun 27, 2008 9:51:21 PM)
thats ok, i was kicked too

ken-t (Jun 27, 2008 9:51:39 PM)
hey steph...meet troy, he is new and has fsh

stephh1 (Jun 27, 2008 9:51:56 PM)
nice to meet you troy

ttroy350 (Jun 27, 2008 9:51:58 PM)
it is hard, i am 25 and have a shoulder fusion surgery to regain use of my right arm and need the left too. i have a hard time accepting it. how do you deal with it?

ttroy350 (Jun 27, 2008 9:52:03 PM)
u too

ken-t (Jun 27, 2008 9:52:59 PM)
hard at times....and it has been 13 years, but im slowly losing my shoulders all together...as well as my legs...i deal with it one day ata time...

stephh1 (Jun 27, 2008 9:53:06 PM)
small crowd tonight

stephh1 (Jun 27, 2008 9:53:22 PM)
same here, hate losing shoulder strength, makes it hard to do even simple things

ken-t (Jun 27, 2008 9:53:27 PM)
and for the last tree years i have noticed a severe change in my ability to to get up on my own

ttroy350 (Jun 27, 2008 9:54:10 PM)
my legs are going too...i have lots of pain

ken-t (Jun 27, 2008 9:54:18 PM)
so far it is steph......we deal with it this by adapting to our needs and then over coming them by knowing we have the knowledge to help each other through

ken-t (Jun 27, 2008 9:54:31 PM)
cramps?

ttroy350 (Jun 27, 2008 9:55:21 PM)
not really cramps, just pain from overuse i guess. i still work despite what the doc. says

ken-t (Jun 27, 2008 9:56:34 PM)
thats good, that you are able tp work, stay as active as long as you are able...and..i have said it many times...never give up or in

ttroy350 (Jun 27, 2008 9:57:39 PM)
i have a 3 year old who tested neg. for fshd. i am so thankful for that. he keeps me going

ken-t (Jun 27, 2008 9:58:52 PM)
but try not to over do it, for you will wear down quicker and the last thing you need to do is pull a muscle...harder to repair....good for you, kids do make a difference no matter if your tired or not...we have a 5 year old, and she like yours is a bundle of energy

ken-t (Jun 27, 2008 10:00:14 PM)
oh i have some news...abby has a loose tooth and she is all kinda excited about it

stephh1 (Jun 27, 2008 10:00:37 PM)
oh how cute

ttroy350 (Jun 27, 2008 10:00:47 PM)
i do heating and air. i told my company about me finally. they said not to worry about a thing. i have heard some say they are planning to send me to school for computer drafting. that would be such a relief

ken-t (Jun 27, 2008 10:00:51 PM)
and it is good your son has no symptoms of this too troy

ken-t (Jun 27, 2008 10:01:25 PM)
it is good they are going to work with you and not try to phase you out...

ttroy350 (Jun 27, 2008 10:01:46 PM)
no, he is great. the blood test showed neg. he is so full of energy and smiles

ken-t (Jun 27, 2008 10:02:00 PM)
she asked me the other day how the tooth fairy was going to get into our place so she cold see her tooth...

ttroy350 (Jun 27, 2008 10:02:33 PM)
lol, full of questions

stephh1 (Jun 27, 2008 10:02:33 PM)
same way santa claus does, magic. lol

ken-t (Jun 27, 2008 10:02:42 PM)
as he should be, wait until he starts asking where babies come from...mine has already started

tatbird (Jun 27, 2008 10:02:56 PM)
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ttroy350 (Jun 27, 2008 10:02:58 PM)
ouch!

CRIS (Jun 27, 2008 10:03:00 PM)
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stephh1 (Jun 27, 2008 10:03:04 PM)
hi tim

tatbird (Jun 27, 2008 10:03:21 PM)
Howdy

stephh1 (Jun 27, 2008 10:03:24 PM)
and what did you tell her ken?

ken-t (Jun 27, 2008 10:03:33 PM)
right now is a fun time for him troy...i used to make up silly answers and tell mine...and she just kept asking...encourage him to ask

stephh1 (Jun 27, 2008 10:03:37 PM)
hi cris

ttroy350 (Jun 27, 2008 10:03:48 PM)
hello

CRIS (Jun 27, 2008 10:03:53 PM)
hi all

tatbird (Jun 27, 2008 10:03:54 PM)
(This user is now known as tim)

ken-t (Jun 27, 2008 10:04:00 PM)
i told her she would shrink and fly in....everyone this is troy he is new

CRIS (Jun 27, 2008 10:04:14 PM)
hi troy....welcome

ken-t (Jun 27, 2008 10:04:22 PM)
hiya cris....and tim yer twin sis says howdy

ttroy350 (Jun 27, 2008 10:04:25 PM)
lol

ttroy350 (Jun 27, 2008 10:04:43 PM)
thanks

tim (Jun 27, 2008 10:04:45 PM)
twin sis?

tim (Jun 27, 2008 10:04:58 PM)
Morning troy how are you?

CRIS (Jun 27, 2008 10:05:07 PM)
where are you from troy?

ttroy350 (Jun 27, 2008 10:05:21 PM)
i'm good. tennessee. you?

CRIS (Jun 27, 2008 10:05:21 PM)
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ken-t (Jun 27, 2008 10:05:27 PM)
yeah your giggling phone buddy

ken-t (Jun 27, 2008 10:05:36 PM)
what part of tennessee troy?

tim (Jun 27, 2008 10:05:41 PM)
we talk about you

ken-t (Jun 27, 2008 10:05:46 PM)
sure ya do

ttroy350 (Jun 27, 2008 10:05:52 PM)
winchester, near chattanooga

tim (Jun 27, 2008 10:05:57 PM)
OH NO Tennessee

ken-t (Jun 27, 2008 10:06:11 PM)
your about 3 hrs south of me for i am in greenevile

ken-t (Jun 27, 2008 10:06:23 PM)
yep, i know where that is

CRIS (Jun 27, 2008 10:06:37 PM)
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ken-t (Jun 27, 2008 10:06:42 PM)
wb cris

ken-t (Jun 27, 2008 10:06:53 PM)
greeneville

tim (Jun 27, 2008 10:06:57 PM)
troy you have LGMD

CRIS (Jun 27, 2008 10:07:08 PM)
funny....I asked a question and disappeared....lol

ttroy350 (Jun 27, 2008 10:07:09 PM)
no i have FSHD

tim (Jun 27, 2008 10:07:22 PM)
ok

CRIS (Jun 27, 2008 10:07:55 PM)
where are you from, troy?

ttroy350 (Jun 27, 2008 10:07:58 PM)
am i the only one...i guess so this is the LGMD room lol

ttroy350 (Jun 27, 2008 10:08:08 PM)
winchester, tennessee

ken-t (Jun 27, 2008 10:08:18 PM)
below athens

tim (Jun 27, 2008 10:08:28 PM)
ken sorry I was late but I hadto deal with the new van and yours and my friend mikie

ken-t (Jun 27, 2008 10:08:42 PM)
my van?

tim (Jun 27, 2008 10:09:15 PM)
no you got the small van .. I got the big gas hog

ken-t (Jun 27, 2008 10:09:30 PM)
thats ok, im glad you made it...i talked to yer other half and she told me you was playing

ken-t (Jun 27, 2008 10:09:45 PM)
yeah but does it run?

ken-t (Jun 27, 2008 10:09:59 PM)
oh and troy, welcome to the family

ttroy350 (Jun 27, 2008 10:10:07 PM)
thanks

ken-t (Jun 27, 2008 10:10:13 PM)
we are nuttier than a bag of squirrels

ttroy350 (Jun 27, 2008 10:10:18 PM)
lol

stephh1 (Jun 27, 2008 10:10:51 PM)
no comment. lol

ttroy350 (Jun 27, 2008 10:11:00 PM)
how old is everyone? is everyone still able to work?

tim (Jun 27, 2008 10:11:00 PM)
don't know I put gas in the fuse box .. and ask Andy to start it... he told me ok after he plays the game xbox360

stephh1 (Jun 27, 2008 10:11:31 PM)
34 and i don't work, on disability

tim (Jun 27, 2008 10:11:35 PM)
I'm old troy but ken is my twin

ken-t (Jun 27, 2008 10:11:36 PM)
tims older than dirt, i refuse to ask the ladies and im younger than dirt...lol i am 41

tim (Jun 27, 2008 10:11:53 PM)
46 and I'm in texas

CRIS (Jun 27, 2008 10:12:10 PM)
60/f/calif

ken-t (Jun 27, 2008 10:12:13 PM)
diability because i fell 6 years ago and busted a couple of dics...but i still get around

ttroy350 (Jun 27, 2008 10:12:28 PM)
i not sure if i want disability

ttroy350 (Jun 27, 2008 10:12:44 PM)
the doc wants me to apply though

ken-t (Jun 27, 2008 10:12:49 PM)
you will know when its time troy

ken-t (Jun 27, 2008 10:13:06 PM)
go ahead and do so, for it does take time to get it

CRIS (Jun 27, 2008 10:13:08 PM)
do you work now/

ttroy350 (Jun 27, 2008 10:13:11 PM)
sometimes it is hard to walk

tim (Jun 27, 2008 10:13:14 PM)
I'm on disability .. and I work harder now

ken-t (Jun 27, 2008 10:13:28 PM)
tim, you talk more than you work

ken-t (Jun 27, 2008 10:13:34 PM)
heeeheeehee

ttroy350 (Jun 27, 2008 10:13:42 PM)
yea i still work. i do heating and air. i cant apply if i am working though

ken-t (Jun 27, 2008 10:13:51 PM)
have you considered and cane or chair troy?

tim (Jun 27, 2008 10:13:52 PM)
yes I do put I get vans for 10 bucks

tim (Jun 27, 2008 10:13:54 PM)
lol

CRIS (Jun 27, 2008 10:14:22 PM)
how old are you, troy?

ttroy350 (Jun 27, 2008 10:14:28 PM)
i am 25, i am having a hard time accepting that

CRIS (Jun 27, 2008 10:14:51 PM)
that you are 25 or the cane and chair

ttroy350 (Jun 27, 2008 10:15:00 PM)
cane or chair

CRIS (Jun 27, 2008 10:15:45 PM)
do you have a hard time walking?

ken-t (Jun 27, 2008 10:15:48 PM)
we are here to help you through whatever you need.....and it will get hard, but know this, we will never give up on you...and we will give you all the info you need to help.....

ttroy350 (Jun 27, 2008 10:16:01 PM)
good days and bad days

tim (Jun 27, 2008 10:16:26 PM)
thats what we are here for Troy is to help

ttroy350 (Jun 27, 2008 10:17:17 PM)
i need some support. no one seems to understand what i am going through. my good friends always seem to change the subject

ken-t (Jun 27, 2008 10:17:19 PM)
it will be hard too...we just hope we are able to make it eaiser for you

tim (Jun 27, 2008 10:18:17 PM)
we are support and friends ..

ttroy350 (Jun 27, 2008 10:18:30 PM)
thanks so much

CRIS (Jun 27, 2008 10:18:37 PM)
I know what you mean, troy.....I don't think my family understands either

ttroy350 (Jun 27, 2008 10:19:18 PM)
i just wanna be normal like everyone else, i just wanna be able to smile

tim (Jun 27, 2008 10:19:21 PM)
thay just don't know what to do to help us or fix us ..

ken-t (Jun 27, 2008 10:20:02 PM)
they will, because they do not understand,

tim (Jun 27, 2008 10:20:13 PM)
troy ... may I ask you something?

ttroy350 (Jun 27, 2008 10:20:17 PM)
sure

tim (Jun 27, 2008 10:20:26 PM)
what is normal?

tim (Jun 27, 2008 10:20:53 PM)
I'm normal in my own way

ttroy350 (Jun 27, 2008 10:21:26 PM)
well, i guess i am too. but that doesnt change the way people look at me because i can barely smile

ttroy350 (Jun 27, 2008 10:22:35 PM)
or because my eyes stay red because my eyelids wont close

tim (Jun 27, 2008 10:23:01 PM)
do what I did people looking at me .. take a lot of pictures and have then with you so if people just look hand them a pic .. last longer

ttroy350 (Jun 27, 2008 10:23:40 PM)
lol

tim (Jun 27, 2008 10:24:22 PM)
my wife just keeps walking

CRIS (Jun 27, 2008 10:24:26 PM)
would dark glasses help

ttroy350 (Jun 27, 2008 10:24:48 PM)
i wear them all the time

tim (Jun 27, 2008 10:25:06 PM)
why hide cis ... be proud of what god gave ya

tim (Jun 27, 2008 10:25:10 PM)
cris

CRIS (Jun 27, 2008 10:25:39 PM)
maybe some people want to hide some things....it is OK

ttroy350 (Jun 27, 2008 10:26:36 PM)
hiding helps some people

CRIS (Jun 27, 2008 10:26:39 PM)
whatever makes the person feel better.....

tim (Jun 27, 2008 10:27:25 PM)
not me /.. I don't hide anything .. ask Ken

tim (Jun 27, 2008 10:27:27 PM)
lol

stephh1 (Jun 27, 2008 10:27:37 PM)
we wouldn't wear clothes if we had nothing to hide. lol

ttroy350 (Jun 27, 2008 10:27:38 PM)
how long did it take everyone to get disability?

tim (Jun 27, 2008 10:28:14 PM)
Donna makes me Steph

stephh1 (Jun 27, 2008 10:28:15 PM)
i was on it for a while as a kid, so reinstating it at 18 wasn't difficult

stephh1 (Jun 27, 2008 10:28:23 PM)
lol tim

ken-t (Jun 27, 2008 10:29:08 PM)
Tim hides nothing

tim (Jun 27, 2008 10:29:13 PM)
it took me 5 years to get on disability

ttroy350 (Jun 27, 2008 10:29:23 PM)
omg

tim (Jun 27, 2008 10:29:47 PM)
but thats a long story ...

ttroy350 (Jun 27, 2008 10:30:10 PM)
it is wrong how they do true disabled people

ken-t (Jun 27, 2008 10:30:29 PM)
I agree Troy I agree

tim (Jun 27, 2008 10:30:32 PM)
yes some times

stephh1 (Jun 27, 2008 10:32:11 PM)
wonder where hen and the rest of the gang are tonight?

CRIS (Jun 27, 2008 10:32:36 PM)
I was just thinking the same thing....lol

stephh1 (Jun 27, 2008 10:32:51 PM)
lol

CRIS (Jun 27, 2008 10:34:04 PM)
troy....do you have help at home?

ttroy350 (Jun 27, 2008 10:34:37 PM)
my wife is a nurse. but i do okay by myself. im stubborn

tim (Jun 27, 2008 10:35:46 PM)
stubborn is good .. I don't think I'm stubborn

ken-t (Jun 27, 2008 10:35:52 PM)
Seems to be a common trait in MD patients

CRIS (Jun 27, 2008 10:35:57 PM)
that is nice that she is a nurse.....I am sure you do fine by yourself

tim (Jun 27, 2008 10:36:52 PM)
what is ? ken?

ken-t (Jun 27, 2008 10:36:53 PM)
Tim you have to be kidding you are one of the most stubborn people I have ever met.

ken-t (Jun 27, 2008 10:37:02 PM)
stubborn

tim (Jun 27, 2008 10:37:44 PM)
thanks I think .. I gett the job done

ttroy350 (Jun 27, 2008 10:38:09 PM)
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ken-t (Jun 27, 2008 10:38:18 PM)
bye Troy

tim (Jun 27, 2008 10:39:13 PM)
please come back troy your welcome anytime

CRIS (Jun 27, 2008 10:40:30 PM)
Ken....how was your horse when you got home....glad to see you?

ken-t (Jun 27, 2008 10:41:06 PM)
She is good, she has her slick coat now and is really beautiful. Getting fat from being overfed by my father-in-law.

CRIS (Jun 27, 2008 10:41:40 PM)
good to hear.....

tim (Jun 27, 2008 10:42:06 PM)
Ken?

tim (Jun 27, 2008 10:42:26 PM)
are you sure I'm stubborn?

ken-t (Jun 27, 2008 10:42:26 PM)
yes

ken-t (Jun 27, 2008 10:42:33 PM)
YES VERY

stephh1 (Jun 27, 2008 10:42:43 PM)
hit a nerve ken. lol

ken-t (Jun 27, 2008 10:42:51 PM)
lol somewhat.

tim (Jun 27, 2008 10:43:13 PM)
I'm like booger red .. I know what I want

stephh1 (Jun 27, 2008 10:43:40 PM)
yeah that's called stubborness, trust me i know from experience, my own. lol

tim (Jun 27, 2008 10:44:03 PM)
lol

tim (Jun 27, 2008 10:44:12 PM)
ken is just as bad

ken-t (Jun 27, 2008 10:44:16 PM)
you are a booger that is true

ken-t (Jun 27, 2008 10:44:23 PM)
nope not me

stephh1 (Jun 27, 2008 10:44:55 PM)
no your stubborness has never got you dumped out of your chair ken. lol

tim (Jun 27, 2008 10:44:57 PM)
yes you are plus you don't like the morning heat

tim (Jun 27, 2008 10:44:58 PM)
lol

ken-t (Jun 27, 2008 10:45:14 PM)
mornings are fine, it is the afternoon that is a killer

stephh1 (Jun 27, 2008 10:45:27 PM)
nothing like 5pm heat

tim (Jun 27, 2008 10:45:33 PM)
got him pushed around in wallmart

ken-t (Jun 27, 2008 10:45:38 PM)
5pm it gets a little better.

ken-t (Jun 27, 2008 10:45:56 PM)
it is the noon to 3pm heat that will cause heat stroke

stephh1 (Jun 27, 2008 10:46:16 PM)
not in the middle of summer, hottest part of the day here, doesn't cool down until around 9-10 pm

ken-t (Jun 27, 2008 10:46:28 PM)
where?

stephh1 (Jun 27, 2008 10:46:38 PM)
vegas

ken-t (Jun 27, 2008 10:46:45 PM)
oh, yes I guess so.

tim (Jun 27, 2008 10:46:50 PM)
yep thats true steph there

ken-t (Jun 27, 2008 10:46:53 PM)
desert

tim (Jun 27, 2008 10:47:01 PM)
its dry heat there

stephh1 (Jun 27, 2008 10:47:36 PM)
yes

tim (Jun 27, 2008 10:47:48 PM)
ken seen 109 here and 60% humt.

stephh1 (Jun 27, 2008 10:48:00 PM)
ich, hate humidity

ken-t (Jun 27, 2008 10:48:25 PM)
don't come here then, we have 100% with storms today, but it is only 70 degrees too.

stephh1 (Jun 27, 2008 10:49:16 PM)
trust me ken, won't be coming that way. lol

ken-t (Jun 27, 2008 10:49:40 PM)
lol

tim (Jun 27, 2008 10:49:42 PM)
70 I need a blanket

ken-t (Jun 27, 2008 10:49:53 PM)
yep and a winter coat

tim (Jun 27, 2008 10:50:15 PM)
it got to 70 here and I was cold

stephh1 (Jun 27, 2008 10:50:37 PM)
lol depends on if it is 110 one day and 70 the next

tim (Jun 27, 2008 10:50:38 PM)
but ken you did get a nice tan

tim (Jun 27, 2008 10:53:42 PM)
KEN I just hope you had fun down here

ken-t (Jun 27, 2008 10:53:48 PM)
yes i did, and you nealy pushed me over in wal-mart, ya adolecent

tim (Jun 27, 2008 10:53:58 PM)
lol

ken-t (Jun 27, 2008 10:54:17 PM)
yes we did tim...liked it so much, we're gonna move there

ken-t (Jun 27, 2008 10:54:43 PM)
and steph...dont have to be pushed out of my chair, i find ways to fall out of it

stephh1 (Jun 27, 2008 10:55:13 PM)
i know

ken-t (Jun 27, 2008 10:55:22 PM)
lol

tim (Jun 27, 2008 10:55:54 PM)
we go fishing and he likes to think about falling out of the chair...lol

stephh1 (Jun 27, 2008 10:56:03 PM)
lol

ken-t (Jun 27, 2008 10:56:16 PM)
and i love that heat, i almost passed out one day..i was working in the yard, it was only 101 outside

ken-t (Jun 27, 2008 10:56:40 PM)
im buying you a winch to put on that scooter of yours

ken-t (Jun 27, 2008 10:57:09 PM)
falling into the river you mean

CRIS (Jun 27, 2008 10:57:17 PM)
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tim (Jun 27, 2008 10:57:21 PM)
don't need one if I get stuck I call Andy

tim (Jun 27, 2008 10:57:22 PM)
lol

ken-t (Jun 27, 2008 10:57:28 PM)
thhb cris

tim (Jun 27, 2008 10:57:51 PM)
yep just a small lake

ken-t (Jun 27, 2008 10:58:02 PM)
yea, but one day...andy will eave home and then your there with yer other half

ken-t (Jun 27, 2008 10:58:14 PM)
there aint nutin small in texas

ken-t (Jun 27, 2008 10:58:24 PM)
even them cows are big

stephh1 (Jun 27, 2008 10:58:43 PM)
gotta run, night all tc

tim (Jun 27, 2008 10:58:44 PM)
lol

tim (Jun 27, 2008 10:58:57 PM)
good night steph

ken-t (Jun 27, 2008 10:59:07 PM)
ok steph...glad you could stop in...and tim, i saw a hawk today

tim (Jun 27, 2008 10:59:24 PM)
lol

stephh1 (Jun 27, 2008 10:59:51 PM)
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ken-t (Jun 27, 2008 10:59:53 PM)
oh and i also saw a buzzard, he was about the size of a sparrow

tim (Jun 27, 2008 10:59:53 PM)
I seen one of those hawk today ..

tim (Jun 27, 2008 11:00:35 PM)
..I seen a red tail buzzard this morning

tim (Jun 27, 2008 11:00:36 PM)
lol

ken-t (Jun 27, 2008 11:00:52 PM)
good night to all that came, hope we made a smile on the faces of those we care about, and to the new ones, please do come again...tim...messanger

ken-t (Jun 27, 2008 11:00:58 PM)
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tim (Jun 27, 2008 11:01:14 PM)
(This user has left DigiChat)