Mitochondrial Chat
paper (Feb 1, 2010 7:05:16 PM)
matt-p (Feb 1, 2010 7:07:04 PM)
(This user has entered Mitochondrial Chat)
paper (Feb 1, 2010 7:07:22 PM)
hey
matt-p (Feb 1, 2010 7:09:42 PM)
hey
matt-p (Feb 1, 2010 7:09:52 PM)
hope jee
paper (Feb 1, 2010 7:10:04 PM)
?
matt-p (Feb 1, 2010 7:10:20 PM)
hope jenn is ok
paper (Feb 1, 2010 7:10:49 PM)
idk she probably tryed to get in like we did and gave up
matt-p (Feb 1, 2010 7:11:02 PM)
maybe
paper (Feb 1, 2010 7:11:41 PM)
i dont have her on my friends list to pm her
matt-p (Feb 1, 2010 7:12:57 PM)
i dont have yahoo ether
paper (Feb 1, 2010 7:13:30 PM)
may be she will keep she will keep trying
matt-p (Feb 1, 2010 7:13:48 PM)
hope so
paper (Feb 1, 2010 7:15:04 PM)
brb
matt-p (Feb 1, 2010 7:15:08 PM)
ok
riley04 (Feb 1, 2010 7:15:14 PM)
(This user has entered Mitochondrial Chat)
matt-p (Feb 1, 2010 7:15:34 PM)
hey riley
riley04 (Feb 1, 2010 7:15:49 PM)
hi matt
riley04 (Feb 1, 2010 7:16:24 PM)
I have not been on this chat for like 4 years
matt-p (Feb 1, 2010 7:16:26 PM)
how are you
riley04 (Feb 1, 2010 7:16:34 PM)
ok
matt-p (Feb 1, 2010 7:16:36 PM)
wow
riley04 (Feb 1, 2010 7:17:08 PM)
I thought maybe jenn would be here
paper (Feb 1, 2010 7:17:12 PM)
ok bk hi riley
paper (Feb 1, 2010 7:17:27 PM)
login was screwed up for a bit
riley04 (Feb 1, 2010 7:17:29 PM)
wow years ago this chat room was packed
paper (Feb 1, 2010 7:17:32 PM)
no one could get in
matt-p (Feb 1, 2010 7:17:33 PM)
i am sci from age 9 also parkinsons
matt-p (Feb 1, 2010 7:17:43 PM)
use w/c
riley04 (Feb 1, 2010 7:18:42 PM)
my 24 year old son has mito well so does my self, daughter and mom but my son is the most severe
matt-p (Feb 1, 2010 7:19:00 PM)
aawww
riley04 (Feb 1, 2010 7:19:04 PM)
he also has sever cyclic vomiting syndrome
riley04 (Feb 1, 2010 7:19:21 PM)
and severe dysautonomia
matt-p (Feb 1, 2010 7:19:26 PM)
poor guy
paper (Feb 1, 2010 7:19:34 PM)
kind of sounds like my family but we have central core myopathy
matt-p (Feb 1, 2010 7:19:41 PM)
is he in w/c
riley04 (Feb 1, 2010 7:19:54 PM)
he receives iv hydration every month or so
riley04 (Feb 1, 2010 7:20:09 PM)
no not as of yet
matt-p (Feb 1, 2010 7:20:38 PM)
thats good
riley04 (Feb 1, 2010 7:20:47 PM)
though he does not have much engery he is like 6'2" and weighs like 140
matt-p (Feb 1, 2010 7:20:55 PM)
where you from indiana hee
riley04 (Feb 1, 2010 7:21:11 PM)
cleveland ohio
matt-p (Feb 1, 2010 7:21:28 PM)
neat
riley04 (Feb 1, 2010 7:21:34 PM)
so he is a patient of the ccf
matt-p (Feb 1, 2010 7:21:41 PM)
he is little like me
matt-p (Feb 1, 2010 7:21:53 PM)
ccf
matt-p (Feb 1, 2010 7:22:05 PM)
whats ccf
riley04 (Feb 1, 2010 7:22:13 PM)
my husband was in the airforce in indiana
riley04 (Feb 1, 2010 7:22:38 PM)
cleveland clinic foundation
matt-p (Feb 1, 2010 7:22:52 PM)
theres an air base in indy
matt-p (Feb 1, 2010 7:23:20 PM)
was anyway think it got shut down now
riley04 (Feb 1, 2010 7:23:36 PM)
he thinks they closed it he thinks it was called lowery
matt-p (Feb 1, 2010 7:24:29 PM)
i cant think of the name
paper (Feb 1, 2010 7:24:37 PM)
idk where everybody is at
riley04 (Feb 1, 2010 7:24:37 PM)
I can't beleive there is no one here
paper (Feb 1, 2010 7:24:49 PM)
usually a lot in here
paper (Feb 1, 2010 7:25:04 PM)
but there was trouble with login till i emailed penny
riley04 (Feb 1, 2010 7:25:28 PM)
I told matt I have not been in this chat for like 4 years and it was packed
matt-p (Feb 1, 2010 7:25:38 PM)
lowery dont sound right but I dont like to go against someone thats served there
paper (Feb 1, 2010 7:25:45 PM)
ya usually is
paper (Feb 1, 2010 7:26:06 PM)
wasnt that base up north
riley04 (Feb 1, 2010 7:26:13 PM)
Grisholm he said
riley04 (Feb 1, 2010 7:26:21 PM)
spelled wrong
matt-p (Feb 1, 2010 7:26:22 PM)
was one in indy
riley04 (Feb 1, 2010 7:26:37 PM)
lowery was denver
paper (Feb 1, 2010 7:26:38 PM)
u are thinking about ft ben matty
paper (Feb 1, 2010 7:27:05 PM)
they closed ft ben a few years ago
riley04 (Feb 1, 2010 7:27:06 PM)
maybe grissom
matt-p (Feb 1, 2010 7:27:15 PM)
i dont knoe
matt-p (Feb 1, 2010 7:27:30 PM)
THATS IT
riley04 (Feb 1, 2010 7:27:32 PM)
thats ok it was a long time ago
matt-p (Feb 1, 2010 7:27:40 PM)
grissom
riley04 (Feb 1, 2010 7:28:10 PM)
he said maybe 60 miles of indy
riley04 (Feb 1, 2010 7:28:22 PM)
north of indy
riley04 (Feb 1, 2010 7:29:07 PM)
so matt you have mito
paper (Feb 1, 2010 7:29:21 PM)
so what brought u bk to chat riley
matt-p (Feb 1, 2010 7:29:21 PM)
no
matt-p (Feb 1, 2010 7:29:34 PM)
not offical
riley04 (Feb 1, 2010 7:29:55 PM)
I missed everyone and wanted to catch up a little bit
matt-p (Feb 1, 2010 7:30:00 PM)
i am sci in w/c from age 9 also parkinson
paper (Feb 1, 2010 7:30:15 PM)
sci= spinal cord injury
paper (Feb 1, 2010 7:30:17 PM)
lol
riley04 (Feb 1, 2010 7:30:30 PM)
will be right back
paper (Feb 1, 2010 7:30:33 PM)
k
matt-p (Feb 1, 2010 7:30:35 PM)
ok
matt-p (Feb 1, 2010 7:31:50 PM)
how is L
paper (Feb 1, 2010 7:32:11 PM)
he is good he goes bk to the ear dr tomarrow to see how it is healing
matt-p (Feb 1, 2010 7:32:34 PM)
hope you get good news
paper (Feb 1, 2010 7:32:48 PM)
we wont know if he can hear for a few months
matt-p (Feb 1, 2010 7:33:00 PM)
yea
paper (Feb 1, 2010 7:33:16 PM)
all the stitches have came out
matt-p (Feb 1, 2010 7:33:24 PM)
oh boy
paper (Feb 1, 2010 7:33:28 PM)
the incission looks good
matt-p (Feb 1, 2010 7:33:34 PM)
good
matt-p (Feb 1, 2010 7:35:30 PM)
where you hve to go to for his ear doc
paper (Feb 1, 2010 7:35:38 PM)
richmond
matt-p (Feb 1, 2010 7:35:56 PM)
thats good
riley04 (Feb 1, 2010 7:35:58 PM)
i am back
paper (Feb 1, 2010 7:36:03 PM)
wb
matt-p (Feb 1, 2010 7:36:06 PM)
thats close to you
matt-p (Feb 1, 2010 7:36:13 PM)
wb
riley04 (Feb 1, 2010 7:36:20 PM)
thanks my riley had to go outside
matt-p (Feb 1, 2010 7:36:32 PM)
aawww puppy
paper (Feb 1, 2010 7:36:35 PM)
lol what is riley
riley04 (Feb 1, 2010 7:36:38 PM)
paper where are you from
paper (Feb 1, 2010 7:36:50 PM)
indiana
matt-p (Feb 1, 2010 7:37:07 PM)
me and paper have met
riley04 (Feb 1, 2010 7:37:29 PM)
yeah we lost 2 boards from our fence and he got out 2 weeks ago and we found him 2 miles from our house the next day
riley04 (Feb 1, 2010 7:37:42 PM)
oh wow
matt-p (Feb 1, 2010 7:37:48 PM)
wow
paper (Feb 1, 2010 7:37:52 PM)
bad dog ,what kind of dog is riley
matt-p (Feb 1, 2010 7:38:00 PM)
how big a dog is he
riley04 (Feb 1, 2010 7:38:04 PM)
a min schnauzer
riley04 (Feb 1, 2010 7:38:11 PM)
mini
matt-p (Feb 1, 2010 7:38:15 PM)
lap puppy
matt-p (Feb 1, 2010 7:38:28 PM)
small one
paper (Feb 1, 2010 7:38:29 PM)
cute
riley04 (Feb 1, 2010 7:38:49 PM)
yeah we are lucky we found him he ahd a little exposure the vet said
paper (Feb 1, 2010 7:38:52 PM)
i have a standard poodle and a boxer dalmation cross
matt-p (Feb 1, 2010 7:39:13 PM)
ops
paper (Feb 1, 2010 7:39:19 PM)
oh and 3 kittys
matt-p (Feb 1, 2010 7:39:34 PM)
little fella gona have kiddos
riley04 (Feb 1, 2010 7:40:05 PM)
no cats riley would not do well with another animal our fault we never socialized him
riley04 (Feb 1, 2010 7:40:14 PM)
ohh
riley04 (Feb 1, 2010 7:40:39 PM)
soon matt
matt-p (Feb 1, 2010 7:40:51 PM)
ops
riley04 (Feb 1, 2010 7:41:15 PM)
I was sorry to see that Jenn is so sick she was my good chat buddy
matt-p (Feb 1, 2010 7:41:37 PM)
i know jenn is very nice
matt-p (Feb 1, 2010 7:41:51 PM)
i am sad about thatt to
riley04 (Feb 1, 2010 7:42:17 PM)
has laurie been here lately
paper (Feb 1, 2010 7:42:26 PM)
(____) nuts anyone
riley04 (Feb 1, 2010 7:43:18 PM)
huh
paper (Feb 1, 2010 7:43:39 PM)
(_)> how about a cup of tea
paper (Feb 1, 2010 7:43:47 PM)
just trying to be funny
riley04 (Feb 1, 2010 7:43:58 PM)
oh ok
paper (Feb 1, 2010 7:44:18 PM)
the first one is a bowl and the second one is a mug
paper (Feb 1, 2010 7:44:20 PM)
get it
riley04 (Feb 1, 2010 7:44:37 PM)
yeah
matt-p (Feb 1, 2010 7:45:06 PM)
watching pawn stars on history channl and there is this on guy they call chum and he is total dum butt
paper (Feb 1, 2010 7:45:32 PM)
i like to share lol dont like to eat in front of you all with out sharing lol
matt-p (Feb 1, 2010 7:45:56 PM)
i will pass on nuts cant have them
paper (Feb 1, 2010 7:46:04 PM)
true
paper (Feb 1, 2010 7:46:09 PM)
sorry matty
matt-p (Feb 1, 2010 7:46:20 PM)
the parkinsons really got me
paper (Feb 1, 2010 7:46:34 PM)
did the shot help any
paper (Feb 1, 2010 7:46:41 PM)
the other day
riley04 (Feb 1, 2010 7:46:44 PM)
do u have mito also matt
matt-p (Feb 1, 2010 7:46:56 PM)
no
riley04 (Feb 1, 2010 7:47:05 PM)
u paper
paper (Feb 1, 2010 7:47:16 PM)
i have central core myopathy
matt-p (Feb 1, 2010 7:47:19 PM)
it helps some paper
matt-p (Feb 1, 2010 7:47:43 PM)
just helps the stiffness
riley04 (Feb 1, 2010 7:47:48 PM)
what is that paper sorry
paper (Feb 1, 2010 7:47:50 PM)
you should try one of the new drugs out matty
paper (Feb 1, 2010 7:47:59 PM)
a rare type of md
riley04 (Feb 1, 2010 7:48:31 PM)
I fathers aunt had parkinsons at the age of 20 maybe is that possible
matt-p (Feb 1, 2010 7:48:35 PM)
i dont want to be someones guine pig nomore
matt-p (Feb 1, 2010 7:48:50 PM)
i am just 35
paper (Feb 1, 2010 7:49:02 PM)
it may help matty look at m fox
matt-p (Feb 1, 2010 7:49:23 PM)
look how thick his wallet is to
paper (Feb 1, 2010 7:49:36 PM)
so u have insurance
riley04 (Feb 1, 2010 7:49:37 PM)
a doctor told my aunt that is maybe was something else that is young for parkinson
paper (Feb 1, 2010 7:49:40 PM)
use it
matt-p (Feb 1, 2010 7:49:45 PM)
hes got the money to get the good stuff
paper (Feb 1, 2010 7:50:09 PM)
have u ever looked at the parkinson web pg
matt-p (Feb 1, 2010 7:50:25 PM)
insurance wont buy stuff that is on trial
riley04 (Feb 1, 2010 7:50:29 PM)
no
paper (Feb 1, 2010 7:50:35 PM)
so get into a trail
paper (Feb 1, 2010 7:51:01 PM)
it is better than spasming all the time
matt-p (Feb 1, 2010 7:51:16 PM)
i am just sick of being a guinie pig
matt-p (Feb 1, 2010 7:51:41 PM)
i dont want to be one nomore
paper (Feb 1, 2010 7:51:44 PM)
ya so are we all but everyonce in a while i could use something new
paper (Feb 1, 2010 7:52:07 PM)
exp if it helped
matt-p (Feb 1, 2010 7:52:08 PM)
i will be ok
paper (Feb 1, 2010 7:52:13 PM)
k
paper (Feb 1, 2010 7:52:39 PM)
so whatsd up riley
matt-p (Feb 1, 2010 7:52:55 PM)
i am more happy now than i was trying a bunch of stuff
riley04 (Feb 1, 2010 7:53:32 PM)
not to much paper
riley04 (Feb 1, 2010 7:54:01 PM)
I just am amazed that there is no one here is it always like this
paper (Feb 1, 2010 7:54:31 PM)
nope just had trouble tonight getting in is all people probably gave up is all
paper (Feb 1, 2010 7:55:16 PM)
god me feet are cold
paper (Feb 1, 2010 7:55:25 PM)
i wish winter was over
matt-p (Feb 1, 2010 7:55:33 PM)
me to
riley04 (Feb 1, 2010 7:55:44 PM)
has rod been in the chat room lately
paper (Feb 1, 2010 7:56:07 PM)
not that i know of but i havent been in every week latly
riley04 (Feb 1, 2010 7:56:16 PM)
yeah I think we are in for another 6 weeks we will know tomorrow
riley04 (Feb 1, 2010 7:56:38 PM)
what about hoodlum or keuka
paper (Feb 1, 2010 7:56:43 PM)
ya probably but i wish it were over
paper (Feb 1, 2010 7:56:59 PM)
hoodlum no
riley04 (Feb 1, 2010 7:57:12 PM)
yeah me too although we can't handle tha heat either
matt-p (Feb 1, 2010 7:57:13 PM)
if that little sucker says six more weeks i am putting a bounty on him
riley04 (Feb 1, 2010 7:57:24 PM)
lol
paper (Feb 1, 2010 7:57:25 PM)
lol
riley04 (Feb 1, 2010 7:57:31 PM)
or cold
paper (Feb 1, 2010 7:57:33 PM)
click click boom
matt-p (Feb 1, 2010 7:57:40 PM)
and dead pays more
paper (Feb 1, 2010 7:57:45 PM)
lol
matt-p (Feb 1, 2010 7:57:58 PM)
lol
paper (Feb 1, 2010 7:58:27 PM)
we have a storm comming friday
matt-p (Feb 1, 2010 7:58:41 PM)
i know
paper (Feb 1, 2010 7:58:46 PM)
yuck
riley04 (Feb 1, 2010 7:58:48 PM)
paper where in indy are you from
paper (Feb 1, 2010 7:58:59 PM)
south east over by ohio
riley04 (Feb 1, 2010 7:59:10 PM)
yuck is right I hope it misses cleveland
paper (Feb 1, 2010 7:59:22 PM)
u going to watch ball game sunday
matt-p (Feb 1, 2010 7:59:44 PM)
who is in game
paper (Feb 1, 2010 7:59:53 PM)
duh
paper (Feb 1, 2010 7:59:57 PM)
super bowl
matt-p (Feb 1, 2010 8:00:00 PM)
i have totaly lost on it
riley04 (Feb 1, 2010 8:00:02 PM)
not sure yet probaly
paper (Feb 1, 2010 8:00:17 PM)
colt and saints
matt-p (Feb 1, 2010 8:00:20 PM)
who is playin
paper (Feb 1, 2010 8:00:20 PM)
duh
matt-p (Feb 1, 2010 8:00:30 PM)
duh
matt-p (Feb 1, 2010 8:00:50 PM)
i have been lost in over 200 channels of tv
paper (Feb 1, 2010 8:00:50 PM)
climb out of your whole matty
paper (Feb 1, 2010 8:00:55 PM)
lol
matt-p (Feb 1, 2010 8:01:19 PM)
i have locals on this dish and cant find them
matt-p (Feb 1, 2010 8:01:26 PM)
lol
paper (Feb 1, 2010 8:01:28 PM)
that isnt good just heard a cop car go like a bat out of he** up my street
matt-p (Feb 1, 2010 8:01:42 PM)
oh boy
paper (Feb 1, 2010 8:01:43 PM)
4thru 59 matty
paper (Feb 1, 2010 8:02:07 PM)
at least thats where my locals are
matt-p (Feb 1, 2010 8:02:18 PM)
no 11 32 41 3
matt-p (Feb 1, 2010 8:02:30 PM)
15 to i think
paper (Feb 1, 2010 8:03:14 PM)
did u get a dvr also matty
matt-p (Feb 1, 2010 8:03:32 PM)
no
paper (Feb 1, 2010 8:03:41 PM)
to bad you would love it
matt-p (Feb 1, 2010 8:03:57 PM)
they wanted charge more for dvr
Keuka (Feb 1, 2010 8:03:59 PM)
(This user has entered Mitochondrial Chat)
Keuka (Feb 1, 2010 8:04:04 PM)
Hello All
paper (Feb 1, 2010 8:04:07 PM)
hi
riley04 (Feb 1, 2010 8:04:20 PM)
hey keuka how the heck are you
paper (Feb 1, 2010 8:04:29 PM)
ya i pd like 150 for our dvr but it is well worth it to me
Keuka (Feb 1, 2010 8:04:53 PM)
Doing well, and you Riley.? Does anyone know how JennS is?
paper (Feb 1, 2010 8:05:21 PM)
havent heard sorry
paper (Feb 1, 2010 8:05:57 PM)
(This user has left DigiChat)
riley04 (Feb 1, 2010 8:05:57 PM)
NO i am sorry i miss her and i missed everyone i was telling matt and paper that i have not been in chat for like4 years
Keuka (Feb 1, 2010 8:06:13 PM)
How are you Riley?
Keuka (Feb 1, 2010 8:06:47 PM)
Paper do you have mito?
Keuka (Feb 1, 2010 8:07:02 PM)
Opps, did not see Paper had left.
Keuka (Feb 1, 2010 8:07:13 PM)
Hello Matt. How are you today?
matt-p (Feb 1, 2010 8:07:19 PM)
doin ok
matt-p (Feb 1, 2010 8:07:42 PM)
hope
riley04 (Feb 1, 2010 8:07:44 PM)
ok keuka my son is still about the same was in the hospital in july for a severe vomiting episode his lactic acid levels were very high so was his annion gap and wbc
Keuka (Feb 1, 2010 8:08:35 PM)
Sorry to hear that Riley. So hard to be a parent sometimes.
Keuka (Feb 1, 2010 8:09:20 PM)
Sounds like you are doing well if he has not had to go back to the hospital... rejoice in the little victories is my motto.
riley04 (Feb 1, 2010 8:10:23 PM)
yeah i feel really bad for him we were told he needs more calories and exersise if he had some more energy maybe his app would be better
riley04 (Feb 1, 2010 8:10:58 PM)
yeah he has nurse come to house every month or so for iv hydration
matt-p (Feb 1, 2010 8:11:09 PM)
riley dose he have a feeding tube
Keuka (Feb 1, 2010 8:11:36 PM)
Sort of the chicken and the egg dilemma//
Keuka (Feb 1, 2010 8:12:32 PM)
Matt, are you affected with mito? I know I should remember but....
matt-p (Feb 1, 2010 8:12:43 PM)
no
riley04 (Feb 1, 2010 8:12:44 PM)
no not as of yet matt he does not want it but it may come to that though i hope not
matt-p (Feb 1, 2010 8:13:05 PM)
they are not bad
matt-p (Feb 1, 2010 8:13:27 PM)
wish i could have kept the one i had
Keuka (Feb 1, 2010 8:13:47 PM)
Why did they remove it, Matt?
matt-p (Feb 1, 2010 8:13:57 PM)
i had the nasel gastric feeding tube
matt-p (Feb 1, 2010 8:14:21 PM)
my nose and all needed a break from it
matt-p (Feb 1, 2010 8:14:49 PM)
it went down my nose to my belly
Keuka (Feb 1, 2010 8:15:01 PM)
got to go. Forgot to put sheets on the bed and hubby is ready to hit the sack. More later.
riley04 (Feb 1, 2010 8:15:02 PM)
he had that in the hospital like 12 years ago to put that liquid through for a colonscopy and he pulled it out did not like it
Keuka (Feb 1, 2010 8:15:04 PM)
(This user has left DigiChat)
matt-p (Feb 1, 2010 8:15:24 PM)
aawww
riley04 (Feb 1, 2010 8:15:33 PM)
nite keuka
matt-p (Feb 1, 2010 8:15:42 PM)
it takes some gettin use to
riley04 (Feb 1, 2010 8:16:32 PM)
i am sure it does knew a few people that had the mick tube
riley04 (Feb 1, 2010 8:17:00 PM)
went in through the stomach
matt-p (Feb 1, 2010 8:17:13 PM)
them are better anna that comes to parent chat has son with one
matt-p (Feb 1, 2010 8:17:42 PM)
momma there her son has one to
riley04 (Feb 1, 2010 8:18:15 PM)
yeah with my son being 24 don't know if he could have that one the docs told him it could come out anytime
matt-p (Feb 1, 2010 8:18:54 PM)
that i dont know
riley04 (Feb 1, 2010 8:19:14 PM)
yeah me either
matt-p (Feb 1, 2010 8:19:22 PM)
i know it is nice not havein to worry about chokein
matt-p (Feb 1, 2010 8:19:27 PM)
with one
matt-p (Feb 1, 2010 8:20:19 PM)
i choke so easy anymore
riley04 (Feb 1, 2010 8:20:31 PM)
oh yeah i am sure that is why my son pulled his out but he was vomiting and that was the only way to get the medication into him
riley04 (Feb 1, 2010 8:20:48 PM)
oh i am sorry to hear that
riley04 (Feb 1, 2010 8:21:06 PM)
did you ever ask about the j tube
matt-p (Feb 1, 2010 8:21:22 PM)
my drinks have to use the thick it and drink out of sippy cups
matt-p (Feb 1, 2010 8:21:43 PM)
no
riley04 (Feb 1, 2010 8:22:26 PM)
did u ever try a calorie drink mix called scandi shake
matt-p (Feb 1, 2010 8:22:48 PM)
i do ensure
riley04 (Feb 1, 2010 8:23:01 PM)
they are like carnation only twice the calories
matt-p (Feb 1, 2010 8:23:11 PM)
insurance is real crappy
riley04 (Feb 1, 2010 8:23:36 PM)
scandi shakes are like 600 calories when mixed with whole milk
matt-p (Feb 1, 2010 8:23:40 PM)
i get ensure thats what insurance will get me
riley04 (Feb 1, 2010 8:23:57 PM)
will medicare pay
matt-p (Feb 1, 2010 8:24:17 PM)
insure is premade open put in sipper drink
matt-p (Feb 1, 2010 8:24:31 PM)
medicaide
riley04 (Feb 1, 2010 8:24:53 PM)
we fought for insurance to pay doctor wrote a letter and it was done a local drug store orders it
riley04 (Feb 1, 2010 8:24:58 PM)
yeah
riley04 (Feb 1, 2010 8:25:30 PM)
yeah this is not
matt-p (Feb 1, 2010 8:25:35 PM)
are govenor is a real jask a$$
riley04 (Feb 1, 2010 8:25:46 PM)
u have to mix with milk
matt-p (Feb 1, 2010 8:26:14 PM)
dont have to its an open dump siper drink
riley04 (Feb 1, 2010 8:26:54 PM)
oh sorry just thought with more calories u would have to drink less
riley04 (Feb 1, 2010 8:27:07 PM)
are u able to eat anything
matt-p (Feb 1, 2010 8:27:13 PM)
you remember the ready made formula for baby in the cans
matt-p (Feb 1, 2010 8:27:19 PM)
yes
riley04 (Feb 1, 2010 8:27:27 PM)
yeah
matt-p (Feb 1, 2010 8:27:31 PM)
i eat some
riley04 (Feb 1, 2010 8:27:35 PM)
well that is good
matt-p (Feb 1, 2010 8:27:51 PM)
thats the same way the ensure is
matt-p (Feb 1, 2010 8:28:07 PM)
all my food has to be pureed
riley04 (Feb 1, 2010 8:28:21 PM)
ahh
riley04 (Feb 1, 2010 8:28:55 PM)
i am sorry I am sure that it is rough some days
matt-p (Feb 1, 2010 8:29:25 PM)
and lets say you wanted to come visit or wanted me to visit there i also use a lot of baby foods in the jars to
matt-p (Feb 1, 2010 8:29:48 PM)
for times like that
riley04 (Feb 1, 2010 8:29:59 PM)
wow
matt-p (Feb 1, 2010 8:30:09 PM)
much easyer that way
riley04 (Feb 1, 2010 8:30:18 PM)
oh sure
riley04 (Feb 1, 2010 8:30:36 PM)
baby food has come a long way
matt-p (Feb 1, 2010 8:30:43 PM)
and the fruits taste better out the jars than being pureed
riley04 (Feb 1, 2010 8:31:17 PM)
oh yeah
riley04 (Feb 1, 2010 8:31:46 PM)
can u eat ice cream
matt-p (Feb 1, 2010 8:32:15 PM)
take caned fruits and try to puree them nd dont eat all it back next meal for some and it has a funky taste
matt-p (Feb 1, 2010 8:32:21 PM)
oh yes
riley04 (Feb 1, 2010 8:34:04 PM)
wow
matt-p (Feb 1, 2010 8:34:07 PM)
pudding to
matt-p (Feb 1, 2010 8:34:35 PM)
you dont want to get between me and a butterscotch pudding
matt-p (Feb 1, 2010 8:34:51 PM)
lol
riley04 (Feb 1, 2010 8:34:51 PM)
ben and jerrys has more calories than most ice creams
riley04 (Feb 1, 2010 8:34:57 PM)
lol
matt-p (Feb 1, 2010 8:35:49 PM)
i dont mind haveing to be fed its really not bad
riley04 (Feb 1, 2010 8:36:19 PM)
thats good at least you can enjoy some foods
riley04 (Feb 1, 2010 8:36:58 PM)
have u tried co q 10
matt-p (Feb 1, 2010 8:37:19 PM)
whats that
riley04 (Feb 1, 2010 8:37:30 PM)
i read on a co q 10 web site that it has help with parkinsons
matt-p (Feb 1, 2010 8:37:46 PM)
no
riley04 (Feb 1, 2010 8:38:09 PM)
Coenzyme Q 10 a vitamin supplement a lot of mito people take it we do
riley04 (Feb 1, 2010 8:38:51 PM)
www.epic4health.com is one look under health i think
matt-p (Feb 1, 2010 8:39:04 PM)
i look at it this way i would rather be fed and the mess kept to a min than feed myself and have a mess from heack for someone to clean up
Mb (Feb 1, 2010 8:39:18 PM)
(This user has entered Mitochondrial Chat)
riley04 (Feb 1, 2010 8:39:22 PM)
oh sure
matt-p (Feb 1, 2010 8:39:26 PM)
hi mb
riley04 (Feb 1, 2010 8:39:32 PM)
hi Mb
Mb (Feb 1, 2010 8:39:54 PM)
hi all
riley04 (Feb 1, 2010 8:40:32 PM)
it is interesting reading it helps with heart problems some cancers parkinsons
matt-p (Feb 1, 2010 8:40:44 PM)
kinda feel less a fool by takein the help than watchin the mess be cleaned up
riley04 (Feb 1, 2010 8:41:52 PM)
oh yeah better for you to have the help than not any at all my moms friends husband has parkinsons
Mb (Feb 1, 2010 8:42:06 PM)
I was hoping to pick your brains a little if anyone has time
matt-p (Feb 1, 2010 8:43:37 PM)
you can try
Mb (Feb 1, 2010 8:44:45 PM)
thanks, I am thinking about moving anywhere in the U.S. that would help my daughter to feel better and have good health care for her mito, where would that be?
matt-p (Feb 1, 2010 8:45:22 PM)
thats a good one
matt-p (Feb 1, 2010 8:45:39 PM)
not sure where that would be
Mb (Feb 1, 2010 8:46:14 PM)
lol. Moved from buffalo, NY to Fl, six months but rains too much and have not found a doc. The rain really hursts her.
riley04 (Feb 1, 2010 8:46:47 PM)
what about arizonia
matt-p (Feb 1, 2010 8:46:59 PM)
insurance here sucks
Mb (Feb 1, 2010 8:47:18 PM)
where are you matt?
riley04 (Feb 1, 2010 8:47:29 PM)
too many bugs for me but nice and dry
matt-p (Feb 1, 2010 8:47:29 PM)
with a preexisting like this its hard
matt-p (Feb 1, 2010 8:47:35 PM)
indiana
riley04 (Feb 1, 2010 8:48:04 PM)
not to alwful bad here
riley04 (Feb 1, 2010 8:48:36 PM)
but gets cold
matt-p (Feb 1, 2010 8:48:43 PM)
but are govenor is a jack a$$
Mb (Feb 1, 2010 8:49:10 PM)
Does Arizona have any good docs? Willing to try anywhere if I can swing it some way
matt-p (Feb 1, 2010 8:49:38 PM)
hang on ok
Mb (Feb 1, 2010 8:49:55 PM)
The cold kills her. If gov. stinks then medical does too. where are you riley04
riley04 (Feb 1, 2010 8:50:02 PM)
not sure Mb I know Dr. Richard Boles is in Los Ang Ca he is great
matt-p (Feb 1, 2010 8:50:04 PM)
let me see if a person from az can come in here
riley04 (Feb 1, 2010 8:50:25 PM)
though i never met him have spoke with him
riley04 (Feb 1, 2010 8:51:08 PM)
he is a genetic doc my son was in a mito cyclic vomiting study
Mb (Feb 1, 2010 8:51:25 PM)
will he see new patients? We were seeing Dr. Cohen in OH
riley04 (Feb 1, 2010 8:51:56 PM)
that is where i am from my son sees him he knows dr boles
riley04 (Feb 1, 2010 8:52:11 PM)
how old id your daughter
Mb (Feb 1, 2010 8:52:34 PM)
my daughter went through the vomiting thing for awhile. keeps getting new probs. every year. she is now 20 got sick at 11
riley04 (Feb 1, 2010 8:52:37 PM)
and you are from flordia?
Mb (Feb 1, 2010 8:53:09 PM)
no, buffalo, NY but moved to Fl. in june to see what would happen with her health.
riley04 (Feb 1, 2010 8:53:33 PM)
my son is 24 and has been sick since 3 years old we went 9 years hearing it was in his head
CRIS (Feb 1, 2010 8:53:41 PM)
(This user has entered Mitochondrial Chat)
riley04 (Feb 1, 2010 8:53:51 PM)
you will really like dr cohen
riley04 (Feb 1, 2010 8:53:58 PM)
hi cris
Mb (Feb 1, 2010 8:54:03 PM)
hi cris
CRIS (Feb 1, 2010 8:54:16 PM)
hi dr cohen
CRIS (Feb 1, 2010 8:54:23 PM)
and MB
matt-p (Feb 1, 2010 8:54:24 PM)
hey cris
riley04 (Feb 1, 2010 8:54:24 PM)
I wish you the best Mb
Mb (Feb 1, 2010 8:54:54 PM)
been seeing Dr. Cohen since she was 12, but in Fl. now and no good docs here
CRIS (Feb 1, 2010 8:54:55 PM)
how can I help you, riley
matt-p (Feb 1, 2010 8:55:02 PM)
mb cris here is in az she can tell you what you want about az ask away
riley04 (Feb 1, 2010 8:55:11 PM)
research dr richard boles from keck in los ang
riley04 (Feb 1, 2010 8:55:39 PM)
not me cris sorry mb
Mb (Feb 1, 2010 8:55:59 PM)
oh cool, wondering if AZ would help my daughter
riley04 (Feb 1, 2010 8:56:55 PM)
hot I don't know if she has problems with heat we have with hot and cold we run air from may till it gets cold
CRIS (Feb 1, 2010 8:56:55 PM)
ok...not sure if I can help because I live in Calif
riley04 (Feb 1, 2010 8:57:20 PM)
cris have u heard of dr. richard boles
matt-p (Feb 1, 2010 8:57:20 PM)
cris i hought you was in az sorry
Mb (Feb 1, 2010 8:57:48 PM)
she has so many problems, Fl did not pan out as well, so might try a new state until she feels better and we find a doc. to manage her
riley04 (Feb 1, 2010 8:58:21 PM)
does she have dysautonomia mb
Mb (Feb 1, 2010 8:58:43 PM)
she does not tolerate heat but the pain is less and she stays in air cond. She does have dysautonomia
riley04 (Feb 1, 2010 8:59:09 PM)
my son has severe cyclic vomiting syndrome and severe dysautonomia secondary to mito
riley04 (Feb 1, 2010 8:59:49 PM)
Dr Thomas at uh hospital in cleveland is a dysautonomia expert researsh him
Mb (Feb 1, 2010 8:59:58 PM)
I feel for you! Hard to manage these kids,
riley04 (Feb 1, 2010 9:00:02 PM)
chelimsky
CRIS (Feb 1, 2010 9:00:06 PM)
sorry I couldn't help...good luck
Mb (Feb 1, 2010 9:00:27 PM)
thanks for listening, appreciate you all being there
matt-p (Feb 1, 2010 9:00:51 PM)
sorry i could not help
CRIS (Feb 1, 2010 9:01:51 PM)
(This user has moved to Living with ALS 2)
Mb (Feb 1, 2010 9:02:03 PM)
talking helped. I just might research AZ and keep everyone posted what states do what to her so she can be the road tester for others..
Mb (Feb 1, 2010 9:02:47 PM)
guess we are going to get bumped cause it is 10
matt-p (Feb 1, 2010 9:02:54 PM)
i know parst of az are warmer than here and dry for the most part
riley04 (Feb 1, 2010 9:03:30 PM)
www.dysautonomia.org
Mb (Feb 1, 2010 9:04:05 PM)
rain is nill there. can travel to CA for a doc I suppose. AZ is little expensive. thanks riley, check it out
riley04 (Feb 1, 2010 9:04:13 PM)
Dr Blair Grubb is in toledo ohio and is a wonderful and verrrry compassionate doctor
matt-p (Feb 1, 2010 9:04:48 PM)
riley is you son still at home
riley04 (Feb 1, 2010 9:04:52 PM)
dr grubb is a dysautonomia expert
riley04 (Feb 1, 2010 9:05:00 PM)
yes he is matt
matt-p (Feb 1, 2010 9:05:14 PM)
neat
riley04 (Feb 1, 2010 9:05:49 PM)
yeah it is sad he is a very nice young man with so many health issues
riley04 (Feb 1, 2010 9:06:16 PM)
lost all friends due to home schooling
Mb (Feb 1, 2010 9:06:19 PM)
how old riley,
riley04 (Feb 1, 2010 9:06:27 PM)
24 mb
matt-p (Feb 1, 2010 9:06:33 PM)
aawww
riley04 (Feb 1, 2010 9:06:41 PM)
shy
riley04 (Feb 1, 2010 9:07:00 PM)
played baseball when young loves sports
matt-p (Feb 1, 2010 9:07:04 PM)
riley you do facebook
Mb (Feb 1, 2010 9:07:05 PM)
my daughter and him should talk, want to hook em up with e-mails. she lost contact with ppl too
riley04 (Feb 1, 2010 9:07:35 PM)
sounds good Mb I am trying to get him on facebook
matt-p (Feb 1, 2010 9:08:15 PM)
i am on facebook even have a pic on there me in my w/c
Mb (Feb 1, 2010 9:08:24 PM)
my daughter was so active into soccer and great student. home schooling too. she doesnt face book but have him e-mail and walk her through face book
Mb (Feb 1, 2010 9:08:41 PM)
mat what is w/c
matt-p (Feb 1, 2010 9:08:48 PM)
wheelchair
riley04 (Feb 1, 2010 9:09:06 PM)
wow can not beleive we have not gotten kicked out nite all if we do mb look forward to talking another time we see dr. cohen in march though we live about 20 minutes from cleveland clinic
Mb (Feb 1, 2010 9:09:30 PM)
lol. daugh mb,
riley04 (Feb 1, 2010 9:09:46 PM)
will do mb
matt-p (Feb 1, 2010 9:10:07 PM)
if we get kicked dont leave it will just put us in different chat
riley04 (Feb 1, 2010 9:10:37 PM)
we are sooo vey lucky to have dr. cohen very compassionate doctor
Mb (Feb 1, 2010 9:10:45 PM)
I might have to fly her to see Dr. Cohen since cant find anything here.
Mb (Feb 1, 2010 9:10:59 PM)
He was only one that said was not in her head
riley04 (Feb 1, 2010 9:11:17 PM)
does flying bother her dysautonomia mb
riley04 (Feb 1, 2010 9:11:53 PM)
he is so very nice and smart
Mb (Feb 1, 2010 9:11:57 PM)
she has never flown, flew, flied. lol. drove to OH only four hrs. now in fl. too far
riley04 (Feb 1, 2010 9:12:46 PM)
I was told just make sure he is well hydrated mb have you contacted angel flights
Mb (Feb 1, 2010 9:13:28 PM)
no, I thought it was for something else. do they fly our kids?
matt-p (Feb 1, 2010 9:13:56 PM)
they fly any medicaly fradgil kids
Mb (Feb 1, 2010 9:14:31 PM)
do I need prior auth. to use them? or doc note?
matt-p (Feb 1, 2010 9:14:55 PM)
and i think the specialize in those that need o2 and any other special equip
riley04 (Feb 1, 2010 9:14:56 PM)
yes mb i heard on small planes if close and larger ones if far check it out
riley04 (Feb 1, 2010 9:15:36 PM)
would not hurt mb they will tell you google them
Mb (Feb 1, 2010 9:15:46 PM)
never thought of that . I certainly will. Wondered how I would get on plane with all the meds. and bottles of water
matt-p (Feb 1, 2010 9:15:52 PM)
you go tryin to fly on northwest or something like that with o2 they cant
Mb (Feb 1, 2010 9:16:26 PM)
what is o2?
matt-p (Feb 1, 2010 9:16:49 PM)
cant even get on plane now with more than 4 oz liquid
riley04 (Feb 1, 2010 9:16:49 PM)
maybe matt sorry i am not sure know a few mito patients that use it all the time
matt-p (Feb 1, 2010 9:17:01 PM)
oxygen
riley04 (Feb 1, 2010 9:17:17 PM)
i can't remember
matt-p (Feb 1, 2010 9:17:25 PM)
you cant riley
Mb (Feb 1, 2010 9:17:36 PM)
I am so not cool, need you to explain everything to me
matt-p (Feb 1, 2010 9:17:52 PM)
it takes an act of god to get on plane with o2 tank
riley04 (Feb 1, 2010 9:17:56 PM)
google them mb and when u contact them they will let you know i hear they are wonderful
matt-p (Feb 1, 2010 9:18:04 PM)
its ok
riley04 (Feb 1, 2010 9:18:37 PM)
is she on oxygen mb
matt-p (Feb 1, 2010 9:19:05 PM)
all the bs we been threw with homeland security the last 10 years has made it rough on the good people
riley04 (Feb 1, 2010 9:19:22 PM)
oh yeah
Mb (Feb 1, 2010 9:19:36 PM)
no o2, cant ambulate nausea, fatigue, pain, I have been pondering how to get her there. I will google them.
matt-p (Feb 1, 2010 9:19:49 PM)
o2 in a tank like that is like a bomb
riley04 (Feb 1, 2010 9:20:37 PM)
would be alot faster when is her appt mb
Mb (Feb 1, 2010 9:20:44 PM)
too bad for those who have trouble getting around as it is then to put up with airport stuff too
riley04 (Feb 1, 2010 9:21:00 PM)
yep
Mb (Feb 1, 2010 9:21:09 PM)
need to make one, want it to be warn there when we go. His Dr. Cohen backed up
matt-p (Feb 1, 2010 9:21:25 PM)
even to get on greyhound bus is a pain
riley04 (Feb 1, 2010 9:21:31 PM)
yeah maybe 2-3 months
Mb (Feb 1, 2010 9:21:59 PM)
I should call soon. was trying to get $$ to get there
matt-p (Feb 1, 2010 9:22:27 PM)
cheak out the angel flights
riley04 (Feb 1, 2010 9:22:28 PM)
that is why i would contact angel flights
Mb (Feb 1, 2010 9:22:51 PM)
they help with payment?
riley04 (Feb 1, 2010 9:23:05 PM)
I think they might
matt-p (Feb 1, 2010 9:23:21 PM)
they will fly you to doc for rock bottom price
riley04 (Feb 1, 2010 9:23:28 PM)
is she on medicaid mb
Mb (Feb 1, 2010 9:23:38 PM)
dont know til I ask. yes she is on medicaid
riley04 (Feb 1, 2010 9:24:04 PM)
does she drink any supplements like boost
riley04 (Feb 1, 2010 9:24:42 PM)
my son drinks scandi shakes 600 calories when mixed with whole milk
Mb (Feb 1, 2010 9:25:08 PM)
no she hates them because she drank them so much years past. lots of med. too nauseated usually to drink or eat
riley04 (Feb 1, 2010 9:25:32 PM)
sorry to hear that mb
Mb (Feb 1, 2010 9:25:51 PM)
what is scandi shakes. she needs something for energy.
riley04 (Feb 1, 2010 9:25:52 PM)
has she tried zofran for nausea
riley04 (Feb 1, 2010 9:26:18 PM)
like boost they have a web sight
riley04 (Feb 1, 2010 9:26:42 PM)
COQ 10 is good but better if she sees cohen first
Mb (Feb 1, 2010 9:26:52 PM)
she is on that but doesnt do too much. she has paresis of the stomach,
riley04 (Feb 1, 2010 9:27:00 PM)
he will checl her level i think
matt-p (Feb 1, 2010 9:27:02 PM)
http://www.angelflightse.org/
Mb (Feb 1, 2010 9:27:23 PM)
Dr. cohen put her on Co-q and other supplements
riley04 (Feb 1, 2010 9:27:27 PM)
sorry mb not sure what that is
matt-p (Feb 1, 2010 9:27:36 PM)
thats the website for fl
riley04 (Feb 1, 2010 9:27:41 PM)
ahh that is good
Mb (Feb 1, 2010 9:27:56 PM)
oh matt you are so sweet
matt-p (Feb 1, 2010 9:28:19 PM)
just want to help best i can
riley04 (Feb 1, 2010 9:28:25 PM)
is she on rx for levo carnintine that might help with engery
Mb (Feb 1, 2010 9:28:42 PM)
yes, still sleeps her life away
matt-p (Feb 1, 2010 9:28:46 PM)
looks like they fly you for free
riley04 (Feb 1, 2010 9:28:49 PM)
levo carintor
riley04 (Feb 1, 2010 9:29:06 PM)
i thought so matt
Mb (Feb 1, 2010 9:29:14 PM)
she has rx for it
riley04 (Feb 1, 2010 9:29:17 PM)
check them out mb
Mb (Feb 1, 2010 9:29:33 PM)
free! oh man
matt-p (Feb 1, 2010 9:29:34 PM)
need to look into it more see what you need
Mb (Feb 1, 2010 9:29:45 PM)
wrote web down already
riley04 (Feb 1, 2010 9:30:07 PM)
where do u get her coq 10 some states medicaid pay www.epic4health i think they are the best
Mb (Feb 1, 2010 9:30:41 PM)
Swanson's vitamin through internet. Q GEL
riley04 (Feb 1, 2010 9:30:53 PM)
www.tishcon.com makes it epic for health sells it they have a health page
riley04 (Feb 1, 2010 9:31:23 PM)
ask if florida medicaid pays for it some states do
Mb (Feb 1, 2010 9:31:30 PM)
epic is expensive but did not try medicaid. will epic put it through for us?
riley04 (Feb 1, 2010 9:31:35 PM)
it really helps
Mb (Feb 1, 2010 9:32:04 PM)
NY paid for her vit. C and magnesium, Fl wont
riley04 (Feb 1, 2010 9:32:11 PM)
no doctor needs to write a letter and send to medicaid
Mb (Feb 1, 2010 9:32:40 PM)
Oh, any doc or Dr. Cohen
riley04 (Feb 1, 2010 9:32:45 PM)
gotta go need to make son his shake see you all next week glad i came back
riley04 (Feb 1, 2010 9:33:04 PM)
i would try her family doc first
Mb (Feb 1, 2010 9:33:10 PM)
nite, nice talking
riley04 (Feb 1, 2010 9:33:31 PM)
same here see u all next week
riley04 (Feb 1, 2010 9:33:37 PM)
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Mb (Feb 1, 2010 9:34:31 PM)
should we call it a nite matt? I go to school on line did this instead of studying
matt-p (Feb 1, 2010 9:34:35 PM)
they want her to beable to get in the plane and sit upright to
Mb (Feb 1, 2010 9:34:46 PM)
she can
matt-p (Feb 1, 2010 9:34:55 PM)
we can
Mb (Feb 1, 2010 9:35:01 PM)
just needs to shift alot
matt-p (Feb 1, 2010 9:35:12 PM)
thats ok
matt-p (Feb 1, 2010 9:35:37 PM)
18993524256
matt-p (Feb 1, 2010 9:36:07 PM)
1800 352 4256 is a phone number i found
matt-p (Feb 1, 2010 9:36:25 PM)
what are you studying
Mb (Feb 1, 2010 9:36:36 PM)
she has always wanted to fly. she would def. get sick. if I don't give her dramamine. Human Service
matt-p (Feb 1, 2010 9:36:50 PM)
neat
matt-p (Feb 1, 2010 9:37:06 PM)
on the human services
Mb (Feb 1, 2010 9:37:19 PM)
I like the HS classes but the other one are hard.
Mb (Feb 1, 2010 9:37:36 PM)
wrote # down thank so much
matt-p (Feb 1, 2010 9:37:39 PM)
i bet
matt-p (Feb 1, 2010 9:37:46 PM)
good
Mb (Feb 1, 2010 9:37:54 PM)
are you able to work at all
matt-p (Feb 1, 2010 9:38:24 PM)
no
matt-p (Feb 1, 2010 9:38:40 PM)
not with the parkinsons
Mb (Feb 1, 2010 9:38:56 PM)
I bet. my aunt has it.
Mb (Feb 1, 2010 9:39:15 PM)
the mito is alot like the parkinsons isnt it?
matt-p (Feb 1, 2010 9:39:25 PM)
i dont know
Mb (Feb 1, 2010 9:39:45 PM)
do you have pain?
matt-p (Feb 1, 2010 9:39:50 PM)
with my sci iand stuff its hard anyway
Mb (Feb 1, 2010 9:40:30 PM)
hey you know i dont get the abrev. well. sci
matt-p (Feb 1, 2010 9:40:32 PM)
when i was little mom had them try a superpubic cath and it made me very sick
matt-p (Feb 1, 2010 9:40:49 PM)
spinal cord injury
Mb (Feb 1, 2010 9:42:07 PM)
oh, so hard to manage most sicknesses but damn man, you have ur hands full.
matt-p (Feb 1, 2010 9:42:23 PM)
its ok
Mb (Feb 1, 2010 9:42:49 PM)
do you get out much?
matt-p (Feb 1, 2010 9:43:21 PM)
with the cath not working out back then mom made doc take it out and she put me back in diapers briefs
matt-p (Feb 1, 2010 9:43:25 PM)
no
Mb (Feb 1, 2010 9:43:53 PM)
cant you retry once in while?
matt-p (Feb 1, 2010 9:44:07 PM)
with the sp cath
Mb (Feb 1, 2010 9:44:22 PM)
ya
matt-p (Feb 1, 2010 9:44:35 PM)
that sp cath has to be sergaly placed
Mb (Feb 1, 2010 9:44:53 PM)
are you up to it?
matt-p (Feb 1, 2010 9:45:22 PM)
please dont look down on me but no
matt-p (Feb 1, 2010 9:45:48 PM)
i dont want to be sick again from it again
Mb (Feb 1, 2010 9:46:06 PM)
would not look down on you, that is why I asked are you up to it. it is like sticking your hand in the fire again
matt-p (Feb 1, 2010 9:46:43 PM)
and as i have got older my bowels have come more unpredictable so i would still have to wear something anyway
Mb (Feb 1, 2010 9:47:21 PM)
would not be worth it then.
matt-p (Feb 1, 2010 9:47:51 PM)
or have surgry to have colo and i am scared of that to
Mb (Feb 1, 2010 9:48:45 PM)
any surgery is scarey and unless you think you will get positive results not worth it
Mb (Feb 1, 2010 9:50:06 PM)
well, mister, gotta get up for work 2morrow, will you be back nx wk? I hope I remember and fit it in. really enjoyed the conversation
matt-p (Feb 1, 2010 9:50:12 PM)
i mean its briefs or bags aide still has to deal with them
Mb (Feb 1, 2010 9:50:35 PM)
true
matt-p (Feb 1, 2010 9:50:52 PM)
i cant change them i shake to bad
matt-p (Feb 1, 2010 9:51:22 PM)
i try to come every week
Mb (Feb 1, 2010 9:51:54 PM)
good you have been a great help to me. take care and until nxt week friend
matt-p (Feb 1, 2010 9:52:42 PM)
you to
Mb (Feb 1, 2010 9:52:54 PM)
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matt-p (Feb 1, 2010 9:53:01 PM)
(This user has left DigiChat)
matt-p (Feb 1, 2010 9:54:17 PM)
(This user has entered Mitochondrial Chat)
matt-p (Feb 1, 2010 9:54:35 PM)
(This user has moved to FSHD Chat)