Young Adults with MD

yankeegirl311 (Oct 25, 2009 4:52:39 PM)
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yankeegirl311 (Oct 25, 2009 4:55:48 PM)
(This user has entered Young Adults with MD)

yankeegirl311 (Oct 25, 2009 4:59:53 PM)
i'll be right back

yankeegirl311 (Oct 25, 2009 5:25:51 PM)
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paper (Oct 25, 2009 5:35:44 PM)
(This user has entered Young Adults with MD)

bellepearle (Oct 25, 2009 5:39:55 PM)
(This user has entered Young Adults with MD)

paper (Oct 25, 2009 5:40:05 PM)
hi bell

bellepearle (Oct 25, 2009 5:40:47 PM)
hey paper...how long have u been in here?

paper (Oct 25, 2009 5:41:00 PM)
about 5 min

bellepearle (Oct 25, 2009 5:42:07 PM)
sorry lauren was doing it but i guess she got signed out or something ;- i just got back from walking my dog - its freeeezing out

bellepearle (Oct 25, 2009 5:42:10 PM)
how r u?

paper (Oct 25, 2009 5:42:23 PM)
how are u

paper (Oct 25, 2009 5:42:27 PM)
i am ok

bellepearle (Oct 25, 2009 5:43:03 PM)
sorry bout that...im good thanks - freezing and numb but good lol

paper (Oct 25, 2009 5:43:11 PM)
lol

yankeegirl311 (Oct 25, 2009 5:43:13 PM)
(This user has entered Young Adults with MD)

paper (Oct 25, 2009 5:43:19 PM)
hi

bellepearle (Oct 25, 2009 5:43:20 PM)
hey

yankeegirl311 (Oct 25, 2009 5:43:26 PM)
i'm sooooooo sorry

bellepearle (Oct 25, 2009 5:43:49 PM)
thats ok laur lol

paper (Oct 25, 2009 5:43:53 PM)
thats ok i was the only one in lgmd1a last night

bellepearle (Oct 25, 2009 5:44:05 PM)
thats sad lol

paper (Oct 25, 2009 5:44:09 PM)
ya

yankeegirl311 (Oct 25, 2009 5:44:10 PM)
did lindsay tell u what happened

paper (Oct 25, 2009 5:44:15 PM)
no

yankeegirl311 (Oct 25, 2009 5:45:38 PM)
i have been logged on since 5:50 but no one was in here so i started writing my paper...i guess it automatically kicked me off

yankeegirl311 (Oct 25, 2009 5:45:47 PM)
how are u?

paper (Oct 25, 2009 5:45:52 PM)
thats ok

paper (Oct 25, 2009 5:46:01 PM)
ok

yankeegirl311 (Oct 25, 2009 5:46:21 PM)
how was your week

bellepearle (Oct 25, 2009 5:46:25 PM)
how was ur wk?

paper (Oct 25, 2009 5:46:29 PM)
lol

bellepearle (Oct 25, 2009 5:46:30 PM)
lol

yankeegirl311 (Oct 25, 2009 5:46:35 PM)
hah

paper (Oct 25, 2009 5:46:48 PM)
like all the rest u

yankeegirl311 (Oct 25, 2009 5:47:15 PM)
if i'm slow to respond i'm sorry, i'm sooo hungry and my bf is here

bellepearle (Oct 25, 2009 5:47:18 PM)
wk was ok

paper (Oct 25, 2009 5:47:27 PM)
thats ok

yankeegirl311 (Oct 25, 2009 5:47:38 PM)
mine was good

yankeegirl311 (Oct 25, 2009 5:49:11 PM)
hows your weekend going

paper (Oct 25, 2009 5:49:33 PM)
someold crap different day

paper (Oct 25, 2009 5:49:40 PM)
same even

yankeegirl311 (Oct 25, 2009 5:51:43 PM)
lol

yankeegirl311 (Oct 25, 2009 5:52:13 PM)
hows matt doing

paper (Oct 25, 2009 5:52:39 PM)
ok i guess havent seen him for a couple days

bellepearle (Oct 25, 2009 5:53:28 PM)
hes usually here every sun

paper (Oct 25, 2009 5:53:34 PM)
ya

bellepearle (Oct 25, 2009 5:53:51 PM)
doing anything special 4 halloween? kids going trick-or-treating?

paper (Oct 25, 2009 5:54:04 PM)
mine are to old

paper (Oct 25, 2009 5:54:06 PM)
ty god

bellepearle (Oct 25, 2009 5:54:12 PM)
how old?

paper (Oct 25, 2009 5:54:18 PM)
14 13

bellepearle (Oct 25, 2009 5:54:25 PM)
thats not 2 old!

yankeegirl311 (Oct 25, 2009 5:54:42 PM)
never too old

paper (Oct 25, 2009 5:54:43 PM)
they think they are lol so i am fine with it

bellepearle (Oct 25, 2009 5:55:09 PM)
lol ok

yankeegirl311 (Oct 25, 2009 5:55:11 PM)
any parties

paper (Oct 25, 2009 5:56:17 PM)
we used to go to a trail and riding hog roast but i dont think i can do the hr trail raide any more so we arent going

paper (Oct 25, 2009 5:56:25 PM)
ride

bellepearle (Oct 25, 2009 5:56:51 PM)
aww thats a shame - sounds like it was fun though

yankeegirl311 (Oct 25, 2009 5:56:53 PM)
awwwww

paper (Oct 25, 2009 5:57:21 PM)
you have to ride a horse the hr up the mountain to get to the party and i cant ride like that no more

bellepearle (Oct 25, 2009 5:57:53 PM)
aww im sorry - i used 2 horseback ride when i was little

yankeegirl311 (Oct 25, 2009 5:58:13 PM)
they should provide a cart

bellepearle (Oct 25, 2009 5:58:20 PM)
yeah def!

paper (Oct 25, 2009 5:58:25 PM)
i love it but if i would go now i would pay with pain for the next week after it

paper (Oct 25, 2009 5:58:46 PM)
cant not a way to get it up there

bellepearle (Oct 25, 2009 5:58:51 PM)
yeah but maybe once a yr it would b worth it

bellepearle (Oct 25, 2009 5:58:55 PM)
really?

paper (Oct 25, 2009 5:58:57 PM)
totally rocky and straight up

bellepearle (Oct 25, 2009 5:59:01 PM)
o geez

paper (Oct 25, 2009 5:59:17 PM)
horse back or nothing

bellepearle (Oct 25, 2009 5:59:32 PM)
o

yankeegirl311 (Oct 25, 2009 5:59:39 PM)
could u ride with your hubby

paper (Oct 25, 2009 5:59:43 PM)
pottys are nearest tree

yankeegirl311 (Oct 25, 2009 5:59:51 PM)
lol

bellepearle (Oct 25, 2009 5:59:53 PM)
ugh lol

yankeegirl311 (Oct 25, 2009 6:00:10 PM)
one with nature

paper (Oct 25, 2009 6:00:13 PM)
no way hubby cant ride worth shit

bellepearle (Oct 25, 2009 6:00:18 PM)
def lol

paper (Oct 25, 2009 6:00:21 PM)
lol

bellepearle (Oct 25, 2009 6:00:21 PM)
haha

paper (Oct 25, 2009 6:01:00 PM)
and it wouldnt be safe one horse goes down with 2 someone would def get hurt

bellepearle (Oct 25, 2009 6:01:20 PM)
yeah thats true

paper (Oct 25, 2009 6:01:38 PM)
besides night rides are bad enough totally scary

bellepearle (Oct 25, 2009 6:01:50 PM)
thats the fun of it though lol

paper (Oct 25, 2009 6:02:05 PM)
ya it was when i was more able

yankeegirl311 (Oct 25, 2009 6:02:09 PM)
lol yea

bellepearle (Oct 25, 2009 6:02:42 PM)
yeah

paper (Oct 25, 2009 6:03:06 PM)
besides we dont have the 100$ buy in

yankeegirl311 (Oct 25, 2009 6:03:39 PM)
are u able to keep positive

paper (Oct 25, 2009 6:03:50 PM)
i try lol

yankeegirl311 (Oct 25, 2009 6:04:33 PM)
very important

paper (Oct 25, 2009 6:05:30 PM)
what type of md do u 2 have again i forget

paper (Oct 25, 2009 6:05:43 PM)
i swear i need to keep a list

paper (Oct 25, 2009 6:05:53 PM)
lol

yankeegirl311 (Oct 25, 2009 6:05:54 PM)
nemaline myopathy

paper (Oct 25, 2009 6:06:24 PM)
i dont think i have ever heard of that one

yankeegirl311 (Oct 25, 2009 6:07:08 PM)
i'm in a wheelchair and on a vent

bellepearle (Oct 25, 2009 6:07:23 PM)
sorry i stepped out 4 a mi

bellepearle (Oct 25, 2009 6:07:29 PM)
its very rare

yankeegirl311 (Oct 25, 2009 6:08:27 PM)
whats your called again

paper (Oct 25, 2009 6:08:27 PM)
we are in the same group of myopathys

bellepearle (Oct 25, 2009 6:08:36 PM)
we r?

paper (Oct 25, 2009 6:08:51 PM)
central core myopathy

paper (Oct 25, 2009 6:09:16 PM)
mine is also very very rare

yankeegirl311 (Oct 25, 2009 6:09:30 PM)
brb

paper (Oct 25, 2009 6:09:32 PM)
k

bellepearle (Oct 25, 2009 6:10:05 PM)
o ok...k

paper (Oct 25, 2009 6:10:29 PM)
how long have u known aboout yours

bellepearle (Oct 25, 2009 6:11:06 PM)
i was diagnosed when i was 15 months

bellepearle (Oct 25, 2009 6:11:12 PM)
what bout u?

paper (Oct 25, 2009 6:12:03 PM)
i only really found out what it was this june but i have had problems since birth just hadent found a dr smart enough to figure it out till now

bellepearle (Oct 25, 2009 6:12:29 PM)
o wow - do u feel better knowing what it is?

matt-p (Oct 25, 2009 6:12:39 PM)
(This user has entered Young Adults with MD)

bellepearle (Oct 25, 2009 6:12:44 PM)
hey matt

paper (Oct 25, 2009 6:12:48 PM)
my dad has md also but \ was misdx

bellepearle (Oct 25, 2009 6:12:48 PM)
how r u?

paper (Oct 25, 2009 6:12:52 PM)
hey matty

matt-p (Oct 25, 2009 6:12:55 PM)
hey all

bellepearle (Oct 25, 2009 6:12:59 PM)
o interesting

paper (Oct 25, 2009 6:13:06 PM)
ya i do now i know why i have fealt so bad

matt-p (Oct 25, 2009 6:13:09 PM)
i am good

bellepearle (Oct 25, 2009 6:13:31 PM)
r u better able 2 treat it now that u know what u have?

bellepearle (Oct 25, 2009 6:13:46 PM)
how was ur wk?

yankeegirl311 (Oct 25, 2009 6:13:47 PM)
i was diagnosed at 6 months old

paper (Oct 25, 2009 6:13:56 PM)
kind of the meds was helping but not any more

yankeegirl311 (Oct 25, 2009 6:13:58 PM)
hey matt

matt-p (Oct 25, 2009 6:14:09 PM)
hey paper how is everybody

bellepearle (Oct 25, 2009 6:14:13 PM)
o maybe u need diff ones or diff dosage

paper (Oct 25, 2009 6:14:16 PM)
we are ok matty

matt-p (Oct 25, 2009 6:14:17 PM)
hey yankee

bellepearle (Oct 25, 2009 6:14:19 PM)
good thanks

matt-p (Oct 25, 2009 6:14:27 PM)
good

matt-p (Oct 25, 2009 6:14:35 PM)
tell all i said hi

yankeegirl311 (Oct 25, 2009 6:14:41 PM)
good too

paper (Oct 25, 2009 6:14:48 PM)
ya i have talked to my mda dr but she dont know what else to try

paper (Oct 25, 2009 6:14:54 PM)
k matty

paper (Oct 25, 2009 6:15:07 PM)
she has never had a pt with ccdmd

bellepearle (Oct 25, 2009 6:15:14 PM)
hmm is she a specialist on it?

paper (Oct 25, 2009 6:15:21 PM)
nope

paper (Oct 25, 2009 6:15:32 PM)
there is only one dr and he is in england

bellepearle (Oct 25, 2009 6:15:41 PM)
o well maybe u need 2 go 2 some1 who is more familiar w/it...there has 2 b some1

bellepearle (Oct 25, 2009 6:15:58 PM)
have u talked 2 him? at least had a phone consult?

paper (Oct 25, 2009 6:16:07 PM)
not yet

yankeegirl311 (Oct 25, 2009 6:16:12 PM)
how bout a second opinion

bellepearle (Oct 25, 2009 6:16:14 PM)
maybe u should

paper (Oct 25, 2009 6:16:31 PM)
the mda dr is my second

bellepearle (Oct 25, 2009 6:16:48 PM)
maybe u need a 3rd lol

matt-p (Oct 25, 2009 6:16:58 PM)
paper have you tried for ssdi or ssi

paper (Oct 25, 2009 6:17:49 PM)
there is just not enough known about it even the british dr is only in his infancy of learning about ccdmd

paper (Oct 25, 2009 6:18:11 PM)
ya matty just havnt gotten it yet

yankeegirl311 (Oct 25, 2009 6:18:14 PM)
wow

bellepearle (Oct 25, 2009 6:18:24 PM)
yeah but if he has a patient w/it hes more likely 2 want 2 learn more and learn from u and ur experiences

matt-p (Oct 25, 2009 6:18:50 PM)
aawww

yankeegirl311 (Oct 25, 2009 6:18:54 PM)
u should call him

bellepearle (Oct 25, 2009 6:19:00 PM)
def u should

bellepearle (Oct 25, 2009 6:19:09 PM)
call, email, something

bellepearle (Oct 25, 2009 6:19:14 PM)
nothing 2 lose

paper (Oct 25, 2009 6:19:20 PM)
there is more cases over there than in usa but still not enough know and i dont know if me and my dad and my kids want to be lab ratts

bellepearle (Oct 25, 2009 6:19:38 PM)
what do u have 2 lose?

paper (Oct 25, 2009 6:19:43 PM)
true

bellepearle (Oct 25, 2009 6:20:01 PM)
def look in2 it

yankeegirl311 (Oct 25, 2009 6:20:13 PM)
and u would be helping others

paper (Oct 25, 2009 6:20:22 PM)
a

paper (Oct 25, 2009 6:20:24 PM)
ya

bellepearle (Oct 25, 2009 6:20:25 PM)
def

bellepearle (Oct 25, 2009 6:20:31 PM)
and helping ur children

yankeegirl311 (Oct 25, 2009 6:20:44 PM)
yup

paper (Oct 25, 2009 6:21:49 PM)
my kids are getting worse but my son wont take pills and my girl cant take very many kinds of pills

matt-p (Oct 25, 2009 6:21:54 PM)
what did everybody do today

yankeegirl311 (Oct 25, 2009 6:22:13 PM)
the chat is closing....see u all next week?

paper (Oct 25, 2009 6:22:13 PM)
i finnished my tweety bird painting

paper (Oct 25, 2009 6:22:20 PM)
k

yankeegirl311 (Oct 25, 2009 6:22:36 PM)
awww

bellepearle (Oct 25, 2009 6:22:42 PM)
aww cute tweety

yankeegirl311 (Oct 25, 2009 6:22:52 PM)
take care all

bellepearle (Oct 25, 2009 6:23:09 PM)
bye laur

yankeegirl311 (Oct 25, 2009 6:23:18 PM)
bye

paper (Oct 25, 2009 6:23:19 PM)
it is for my kids dds he asked if i would do one of tweety and he would take off the rest of the kids bill

paper (Oct 25, 2009 6:23:29 PM)
by u 2

yankeegirl311 (Oct 25, 2009 6:23:29 PM)
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bellepearle (Oct 25, 2009 6:23:36 PM)
cute

paper (Oct 25, 2009 6:23:52 PM)
it is for his office

paper (Oct 25, 2009 6:24:20 PM)
he is turning one of his exam rooms in to tweety room

matt-p (Oct 25, 2009 6:24:23 PM)
neat paper

paper (Oct 25, 2009 6:24:52 PM)
i am glad i got it done it was driving me nuts

matt-p (Oct 25, 2009 6:24:54 PM)
that gives the true meaning to fun bill to pay there

matt-p (Oct 25, 2009 6:25:19 PM)
haveing fun paying the bill

paper (Oct 25, 2009 6:25:46 PM)
not really it was driving me nuts i have never did a cartoon car

matt-p (Oct 25, 2009 6:25:55 PM)
aawww

paper (Oct 25, 2009 6:26:27 PM)
took me a month to get it done between pain jags

matt-p (Oct 25, 2009 6:26:43 PM)
aawww

paper (Oct 25, 2009 6:27:00 PM)
and hands not working right

matt-p (Oct 25, 2009 6:27:30 PM)
i bet

paper (Oct 25, 2009 6:27:38 PM)
k goes to the dds tomarrow so ill be glad to get rid of iy

paper (Oct 25, 2009 6:27:42 PM)
it

bellepearle (Oct 25, 2009 6:28:01 PM)
ok well im gonna go...have a good week all

matt-p (Oct 25, 2009 6:28:05 PM)
we are trying to find different net company

paper (Oct 25, 2009 6:28:11 PM)
ok bell

bellepearle (Oct 25, 2009 6:28:18 PM)
bye guys

paper (Oct 25, 2009 6:28:21 PM)
i am going to go to matty

bellepearle (Oct 25, 2009 6:28:25 PM)
(This user has left DigiChat)

paper (Oct 25, 2009 6:28:37 PM)
my show is comming on

matt-p (Oct 25, 2009 6:28:48 PM)
i have tried all day to day and all day yesterday to get on net and could not get on till late evening both days

matt-p (Oct 25, 2009 6:29:01 PM)
whta show is that

paper (Oct 25, 2009 6:29:14 PM)
home makeover

matt-p (Oct 25, 2009 6:29:22 PM)
mine to

paper (Oct 25, 2009 6:29:30 PM)
ok by

matt-p (Oct 25, 2009 6:29:33 PM)
hope to chat to you this week

paper (Oct 25, 2009 6:29:41 PM)
k

paper (Oct 25, 2009 6:29:44 PM)
(This user has left DigiChat)

matt-p (Oct 25, 2009 6:29:44 PM)
have a good one

matt-p (Oct 25, 2009 6:29:49 PM)
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