Mitochondrial Chat

hoodlum (Oct 13, 2008 6:47:27 PM)
Hello out there...

hoodlum (Oct 13, 2008 6:57:27 PM)
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hoodlum (Oct 13, 2008 7:01:34 PM)
(This user has entered Mitochondrial Chat)

hoodlum (Oct 13, 2008 7:02:21 PM)
Here again... Tampa Bay just won game 3 of AC play offs (in Boston imagine that!)...

Jennifer-S (Oct 13, 2008 7:02:30 PM)
(This user has entered Mitochondrial Chat)

hoodlum (Oct 13, 2008 7:02:41 PM)
Hi Jenn

Jennifer-S (Oct 13, 2008 7:02:53 PM)
hi hoodie!

hoodlum (Oct 13, 2008 7:03:11 PM)
I just finished reading last weeks transcript

Jennifer-S (Oct 13, 2008 7:03:18 PM)
lol

hoodlum (Oct 13, 2008 7:03:21 PM)
not a lot of people showing up...

hoodlum (Oct 13, 2008 7:03:32 PM)
How are you tonight?

Jennifer-S (Oct 13, 2008 7:03:36 PM)
lf and my gab session

hoodlum (Oct 13, 2008 7:03:44 PM)
lol...

hoodlum (Oct 13, 2008 7:04:23 PM)
I just finished watching the TB/RS game... TB won!!!

Jennifer-S (Oct 13, 2008 7:04:51 PM)
you mean tampa bay rays right

hoodlum (Oct 13, 2008 7:05:08 PM)
And the player Baldelli who has been out all season and eventually was dxd with Mito got a 2 run homer in the 7th!

hoodlum (Oct 13, 2008 7:05:16 PM)
yes tampa/boston...

hoodlum (Oct 13, 2008 7:05:28 PM)
Philly/LA is coming on next.

Jennifer-S (Oct 13, 2008 7:05:45 PM)
TB is my old home town team..very exciting

hoodlum (Oct 13, 2008 7:06:11 PM)
I was surprised how much info the sports casters had on Mito and how long they talked about it...

hoodlum (Oct 13, 2008 7:06:38 PM)
I'd love to have a no Boston World series... Yanks are aleady out of it.

hoodlum (Oct 13, 2008 7:07:58 PM)
jenn???

Jennifer-S (Oct 13, 2008 7:08:01 PM)
thats so cool. i just told my friend who is a tampa fan

Jennifer-S (Oct 13, 2008 7:08:09 PM)
sorry i got a phone call

hoodlum (Oct 13, 2008 7:08:20 PM)
oic... thought I got booted again lol

hoodlum (Oct 13, 2008 7:08:23 PM)
np...

Jennifer-S (Oct 13, 2008 7:08:28 PM)
well i'm a die hard yankees fan so of course no boston

hoodlum (Oct 13, 2008 7:08:53 PM)
How is your new computer stuff?

Jennifer-S (Oct 13, 2008 7:09:23 PM)
did i tell you about my yankee stadium visit?

Jennifer-S (Oct 13, 2008 7:09:31 PM)
hasn't come in yet

hoodlum (Oct 13, 2008 7:09:55 PM)
yes, you did... stadium tour and all... so very cool.

Jennifer-S (Oct 13, 2008 7:10:04 PM)
the Buffalo Bisons just became a mets team so now i have to root for them

Jennifer-S (Oct 13, 2008 7:10:08 PM)
very

emtdas (Oct 13, 2008 7:10:10 PM)
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hoodlum (Oct 13, 2008 7:10:14 PM)
have they told you how long it would be until it arrived?

Jennifer-S (Oct 13, 2008 7:10:18 PM)
hi emt...how are you?

emtdas (Oct 13, 2008 7:10:19 PM)
hi all

hoodlum (Oct 13, 2008 7:10:22 PM)
hi emt

captain (Oct 13, 2008 7:10:36 PM)
(This user has entered Mitochondrial Chat)

emtdas (Oct 13, 2008 7:10:43 PM)
doing fine how about all of you

Jennifer-S (Oct 13, 2008 7:10:47 PM)
they said 6 weeks from sept 4 so soon

captain (Oct 13, 2008 7:10:50 PM)
PEEK A BOO!

hoodlum (Oct 13, 2008 7:10:52 PM)
hi captain..welcome to Mito chat.

Jennifer-S (Oct 13, 2008 7:10:58 PM)
hi captain how are you?

emtdas (Oct 13, 2008 7:11:05 PM)
hi captain r u new to chat

captain (Oct 13, 2008 7:11:11 PM)
You can't see me i'm invisible

hoodlum (Oct 13, 2008 7:11:15 PM)
doing okay here emt... how about you and yours?

captain (Oct 13, 2008 7:11:38 PM)
You can't see me im invisible

hoodlum (Oct 13, 2008 7:11:39 PM)
Yes we can captain... invisible is disabled...

Jennifer-S (Oct 13, 2008 7:11:45 PM)
this has been a very hard 2 weeks

Jennifer-S (Oct 13, 2008 7:11:48 PM)
lol

emtdas (Oct 13, 2008 7:11:49 PM)
there doing great ... they got there car seats and power chairs and its made a huge difference and they only had them abt a week

hoodlum (Oct 13, 2008 7:11:55 PM)
do you or someone you know have mito captain?

Jennifer-S (Oct 13, 2008 7:12:04 PM)
thats great emt

emtdas (Oct 13, 2008 7:12:05 PM)
its amazing the 3 year can get through doorways etc in hers

hoodlum (Oct 13, 2008 7:12:27 PM)
wow... that is great...

emtdas (Oct 13, 2008 7:12:27 PM)
i am now going tommorrow to check out a school for her

emtdas (Oct 13, 2008 7:12:36 PM)
but i am not sure its going to be right for her

captain (Oct 13, 2008 7:12:48 PM)
:-( disabled you making fun of the handicapped?

hoodlum (Oct 13, 2008 7:13:13 PM)
captain... if you are unable to participate appropriately you will be banned

emtdas (Oct 13, 2008 7:13:26 PM)
also can anyone tell me they are telling me that i have to provide a nurse for my daughters at my expense through my own private insurance and they want it from the time she gets on the bus til she gets off the bus

hoodlum (Oct 13, 2008 7:13:41 PM)
would you please answer our questions... do you or someone you know have mito?

captain (Oct 13, 2008 7:13:48 PM)
your mean im leaving

captain (Oct 13, 2008 7:13:52 PM)
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hoodlum (Oct 13, 2008 7:14:11 PM)
that was entirely rude...

Jennifer-S (Oct 13, 2008 7:14:25 PM)
i think not emt. the school should provide that i think

hoodlum (Oct 13, 2008 7:14:49 PM)
The school system is responsible for providing all support services necessary emt

emtdas (Oct 13, 2008 7:15:12 PM)
thats what i thought too

hoodlum (Oct 13, 2008 7:15:15 PM)
Don't let them bully you into doing it either....

emtdas (Oct 13, 2008 7:15:36 PM)
but i will find out tommorrow ... they wanted me to transport my 3 year old to and from preschool since its only a 3 hour preschool

Jennifer-S (Oct 13, 2008 7:15:44 PM)
when i worked in FL schools, a few students had their own aides or nurses

Jennifer-S (Oct 13, 2008 7:15:57 PM)
she should get a bus

Jennifer-S (Oct 13, 2008 7:16:22 PM)
you need to find out who is the advocate for your area

Jennifer-S (Oct 13, 2008 7:16:33 PM)
i would call mda. they might know

emtdas (Oct 13, 2008 7:16:39 PM)
and since her endurance is a issue as the day gets longer then if they give her an am preschool then she wouldnt need her wheelchair so they wouldnt need to give her a handicapped accessible preschool

emtdas (Oct 13, 2008 7:16:59 PM)
yeh i am and i spoke to the advocate through mitoaction before so iam going to try to get ahold of her agan

Jennifer-S (Oct 13, 2008 7:17:34 PM)
thats good. they will try to bully you. i had that problem and my daughter is only mildly affected and they still bothered me

hoodlum (Oct 13, 2008 7:17:49 PM)
emt did I see in last weeks transcript that you are in your new home tonight?

emtdas (Oct 13, 2008 7:18:40 PM)
yep

emtdas (Oct 13, 2008 7:18:45 PM)
and on cable

hoodlum (Oct 13, 2008 7:18:53 PM)
How is it... YEAHHHH!!!!

Jennifer-S (Oct 13, 2008 7:19:25 PM)
thats great...much better than that dial up huh. do you like it there?

emtdas (Oct 13, 2008 7:19:35 PM)
its ok still working out the flaws but we are still seperated my hubby is in md til he finishes his job anbd gets somethings done there then he will be with us in abt 2 weeks

Jennifer-S (Oct 13, 2008 7:19:41 PM)
emt do you know how emerson is doing?

emtdas (Oct 13, 2008 7:19:47 PM)
the trees are beautiful

emtdas (Oct 13, 2008 7:19:53 PM)
dont recall emerson whom is it

emtdas (Oct 13, 2008 7:20:29 PM)
brb

Jennifer-S (Oct 13, 2008 7:21:10 PM)
from the mito site

emtdas (Oct 13, 2008 7:23:28 PM)
no dont recall sorry

Jennifer-S (Oct 13, 2008 7:23:55 PM)
their was a post yesterday

Jennifer-S (Oct 13, 2008 7:24:01 PM)
it sounded bad

hoodlum (Oct 13, 2008 7:24:13 PM)
from emerson?

Jennifer-S (Oct 13, 2008 7:24:13 PM)
great grammer jenn lol

Jennifer-S (Oct 13, 2008 7:24:28 PM)
emerson's mom. shes not doing well

Jennifer-S (Oct 13, 2008 7:24:53 PM)
so sad

Jennifer-S (Oct 13, 2008 7:25:12 PM)
i'm on digest so i'm always delayed

Jennifer-S (Oct 13, 2008 7:25:23 PM)
i can't keep up otherwise lol

Jennifer-S (Oct 13, 2008 7:26:17 PM)
i'm going to a local support group for mito here tomorrow. its growing fast

Jennifer-S (Oct 13, 2008 7:27:26 PM)
I wonder if its being overly diagnosed here, there is a higher incidence here or if its just really more common than we think

emtdas (Oct 13, 2008 7:27:53 PM)
i think mito is going to be as common as autism

Jennifer-S (Oct 13, 2008 7:28:05 PM)
gosh i hope not

Jennifer-S (Oct 13, 2008 7:29:33 PM)
i have that creepy crawly feeling again. its making me crazy

hoodlum (Oct 13, 2008 7:32:53 PM)
brb....

hoodlum (Oct 13, 2008 7:33:09 PM)
oops.. forgot to send that when I went to let Satch out...lol

Jennifer-S (Oct 13, 2008 7:33:27 PM)
lol

hoodlum (Oct 13, 2008 7:33:35 PM)
im back ovbiously...

emtdas (Oct 13, 2008 7:33:41 PM)
lol

Jennifer-S (Oct 13, 2008 7:33:48 PM)
thats good!!!

hoodlum (Oct 13, 2008 7:34:38 PM)
are you on a narcotic pain med jenn?

Jennifer-S (Oct 13, 2008 7:35:11 PM)
rarely. i have hydrocodone if i really need it but i ususally am cold turkey

hoodlum (Oct 13, 2008 7:35:47 PM)
when I get ceepy crawly...heebee jeebee's it's usually an indication my fentanyl patch needs to be changed or I'vd dropped back on the oxcy.

Jennifer-S (Oct 13, 2008 7:35:54 PM)
i hate the side affects

emtdas (Oct 13, 2008 7:36:08 PM)
any of you been on neurotin

Jennifer-S (Oct 13, 2008 7:36:09 PM)
my doc says its neuropathy

hoodlum (Oct 13, 2008 7:36:11 PM)
I'm beyond side effects..

Jennifer-S (Oct 13, 2008 7:36:16 PM)
i'm highly allergic to it

hoodlum (Oct 13, 2008 7:36:20 PM)
a very long time ago emt...

emtdas (Oct 13, 2008 7:36:37 PM)
did u have bad dreams on it

Jennifer-S (Oct 13, 2008 7:36:57 PM)
i got a bad rash but i don't remember bad dreams

emtdas (Oct 13, 2008 7:36:59 PM)
my 5 year old does but i dont know if its because of the move and being from the old house to the new one then to grandmas then to the new house

Jennifer-S (Oct 13, 2008 7:37:37 PM)
that could be for sure

Jennifer-S (Oct 13, 2008 7:37:57 PM)
i had horrible nightmares as a kid and i had a normal childhood

Jennifer-S (Oct 13, 2008 7:39:08 PM)
i would ask the doc about it

Jennifer-S (Oct 13, 2008 7:39:49 PM)
lyrica made me extremely anxious so i know they can affect your emotions. i'm usually very even keeled

Jennifer-S (Oct 13, 2008 7:40:23 PM)
i moved emily into her new apt this weekend

hoodlum (Oct 13, 2008 7:40:34 PM)
how did that go jenn?

Jennifer-S (Oct 13, 2008 7:40:55 PM)
stressful but ok. it was very dirty and then we had to paint

Jennifer-S (Oct 13, 2008 7:41:07 PM)
shes close by though which is good

hoodlum (Oct 13, 2008 7:41:10 PM)
oh my...

Jennifer-S (Oct 13, 2008 7:42:38 PM)
i wonder what happened to all the old chatters

hoodlum (Oct 13, 2008 7:43:17 PM)
don't know, but am wondering if we need to take a poll on the listservs to see if we need to change day/time/length...

Jennifer-S (Oct 13, 2008 7:44:25 PM)
i know. its hard for us to stay the whole time if few are here. i kept signing in last week

Jennifer-S (Oct 13, 2008 7:44:52 PM)
i keep meaning to remind people on the lists but i;ve been so busy

hoodlum (Oct 13, 2008 7:44:53 PM)
I saw... you didn't miss anyone...

Jennifer-S (Oct 13, 2008 7:45:11 PM)
thats good. we do have that new artemesia

lkommer (Oct 13, 2008 7:48:41 PM)
(This user has entered Mitochondrial Chat)

Jennifer-S (Oct 13, 2008 7:48:50 PM)
hi lk how are you

emtdas (Oct 13, 2008 7:48:56 PM)
well i am ging to head out it wuz nice talkin to u all

emtdas (Oct 13, 2008 7:49:00 PM)
hi lk

hoodlum (Oct 13, 2008 7:49:05 PM)
hi lk

Jennifer-S (Oct 13, 2008 7:49:10 PM)
you too emt...keep in touch

hoodlum (Oct 13, 2008 7:49:19 PM)
nite emt...take care.

lkommer (Oct 13, 2008 7:49:19 PM)
hello everyone

Jennifer-S (Oct 13, 2008 7:49:21 PM)
lk how is blake doing?

lkommer (Oct 13, 2008 7:49:27 PM)
doing good

Jennifer-S (Oct 13, 2008 7:49:44 PM)
are the issues he was having better?

lkommer (Oct 13, 2008 7:50:00 PM)
yeah for now hes doing really good

Jennifer-S (Oct 13, 2008 7:50:12 PM)
thats good. how is the doc search going?

lkommer (Oct 13, 2008 7:50:24 PM)
he has to have surgery next month i was expecting but not big one

lkommer (Oct 13, 2008 7:50:37 PM)
we are going to go Riley in Indy

Jennifer-S (Oct 13, 2008 7:50:39 PM)
oh my on what?

lkommer (Oct 13, 2008 7:50:57 PM)
one of his tubes came out replace it and take his adnoids out

Jennifer-S (Oct 13, 2008 7:51:04 PM)
is that closer than st louis?

lkommer (Oct 13, 2008 7:51:13 PM)
no 2 hours further

Jennifer-S (Oct 13, 2008 7:51:20 PM)
emily had hers out. it really helped

emtdas (Oct 13, 2008 7:51:21 PM)
nite all

Jennifer-S (Oct 13, 2008 7:51:26 PM)
nite emt

hoodlum (Oct 13, 2008 7:51:28 PM)
nite

emtdas (Oct 13, 2008 7:51:32 PM)
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lkommer (Oct 13, 2008 7:52:59 PM)
im hoping it does with him they wanted to do tonsils but decided with his mito to wait til he gets bigger

lkommer (Oct 13, 2008 7:53:12 PM)
i had something really freaky happen tonight

Jennifer-S (Oct 13, 2008 7:53:31 PM)
what?

hoodlum (Oct 13, 2008 7:53:35 PM)
???

lkommer (Oct 13, 2008 7:54:48 PM)
im divorced from my daughter Jacquelines dad and Blake has a different dad and i live in a really small town and Blake is the one with Mito and Jacquelines grandpas sister just got diagnosed with mito

Jennifer-S (Oct 13, 2008 7:55:19 PM)
who isn't a relative of you?

hoodlum (Oct 13, 2008 7:55:23 PM)
how old would this person be?

lkommer (Oct 13, 2008 7:55:26 PM)
that kinda freaked me out

lkommer (Oct 13, 2008 7:55:41 PM)
she is in her 70s no my ex husbands family

hoodlum (Oct 13, 2008 7:56:15 PM)
research is showing that most older people have mitochondrial changes as a normal part of aging.

Jennifer-S (Oct 13, 2008 7:56:26 PM)
and Jacqueline is healthy?

hoodlum (Oct 13, 2008 7:56:43 PM)
the promenent docs won't even dxd or muscle bx people beyond the age of 55...

lkommer (Oct 13, 2008 7:56:50 PM)
yes but does this up her chances more

Jennifer-S (Oct 13, 2008 7:57:03 PM)
has she been biopsied?

Jennifer-S (Oct 13, 2008 7:57:19 PM)
its probably just a coincidence

lkommer (Oct 13, 2008 7:57:23 PM)
they havent tested jac

hoodlum (Oct 13, 2008 7:57:37 PM)
but it is probably NOT a true mutation/deletion... just effect of aging.

Jennifer-S (Oct 13, 2008 7:57:58 PM)
thats probably it

lkommer (Oct 13, 2008 7:57:58 PM)
she had cancer and it brought it out and muscles deteriorating

hoodlum (Oct 13, 2008 7:58:00 PM)
I really wish we could do expert chats again....

Jennifer-S (Oct 13, 2008 7:58:45 PM)
i would love to bring on my new doc

hoodlum (Oct 13, 2008 7:58:54 PM)
that is not unusual with cancer either.. sounds like she has a lot going on that would make her fatigued, achey etc...

Jennifer-S (Oct 13, 2008 7:58:59 PM)
he doubled my cocktail and gave me new meds

hoodlum (Oct 13, 2008 7:59:08 PM)
is it helping jenn?

Jennifer-S (Oct 13, 2008 7:59:12 PM)
that and older age

lkommer (Oct 13, 2008 7:59:26 PM)
her grandma was looking at me like is blake my ex husbands

Jennifer-S (Oct 13, 2008 7:59:34 PM)
maybe a little. i'm doing the new meds one by one so the verdict is still out

Jennifer-S (Oct 13, 2008 7:59:48 PM)
oh my

hoodlum (Oct 13, 2008 8:00:26 PM)
that is very good tho... to be that safe... most people if phys recommends new protocol they do it all at once... you have had enough exp to know to take it slow.

lkommer (Oct 13, 2008 8:00:53 PM)
what kinds of meds did they give

Jennifer-S (Oct 13, 2008 8:01:03 PM)
i have too many ractions and if i did them all and had a reaction then i wouldn't know whihc one it was

hoodlum (Oct 13, 2008 8:01:30 PM)
I don't think it is a good idea to list meds online for public knowledge.

Jennifer-S (Oct 13, 2008 8:02:02 PM)
good point

Jennifer-S (Oct 13, 2008 8:02:47 PM)
they were to treat my raynauds, dysautonomia and severe cramping

lkommer (Oct 13, 2008 8:02:59 PM)
yeah is good idea not to

lkommer (Oct 13, 2008 8:03:02 PM)
ok

lkommer (Oct 13, 2008 8:03:14 PM)
brb

lkommer (Oct 13, 2008 8:07:21 PM)
im back but going have to get off here

Jennifer-S (Oct 13, 2008 8:07:32 PM)
ok everything alright?

hoodlum (Oct 13, 2008 8:07:44 PM)
nite lk... take care...

lkommer (Oct 13, 2008 8:07:53 PM)
yes didnt realize the time and its school nite have get kids to bed

Jennifer-S (Oct 13, 2008 8:08:07 PM)
ok nite nite

lkommer (Oct 13, 2008 8:08:11 PM)
goodnite

lkommer (Oct 13, 2008 8:08:17 PM)
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Jennifer-S (Oct 13, 2008 8:11:11 PM)
hi to all who are readig transcripts. we miss you

hoodlum (Oct 13, 2008 8:11:26 PM)
Gnite john boy!

Jennifer-S (Oct 13, 2008 8:11:41 PM)
gnite Jim Bob

hoodlum (Oct 13, 2008 8:11:46 PM)
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Jennifer-S (Oct 13, 2008 8:11:54 PM)
nite hood. love ya

Jennifer-S (Oct 13, 2008 8:12:03 PM)
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elliebedelia (Oct 13, 2008 8:16:44 PM)
(This user has entered Mitochondrial Chat)

elliebedelia (Oct 13, 2008 8:16:57 PM)
good evening everyone

elliebedelia (Oct 13, 2008 8:17:14 PM)
(This user has moved to Living with ALS 2)