FA Chat Group

Pinky (Jun 16, 2009 5:58:37 PM)
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cary_s (Jun 16, 2009 6:03:15 PM)
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cary_s (Jun 16, 2009 6:03:40 PM)
Hi pink

Pinky (Jun 16, 2009 6:03:49 PM)
Hey

Pinky (Jun 16, 2009 6:03:57 PM)
How are you?

cary_s (Jun 16, 2009 6:04:13 PM)
was busy getting Norton setup last wk it took forever

cary_s (Jun 16, 2009 6:04:28 PM)
Doing fine HOw about u?

cary_s (Jun 16, 2009 6:07:14 PM)
U there?

Pinky (Jun 16, 2009 6:07:42 PM)
Nothing much......... I am doing okay...... last Tuesday I went to the doctor because the upper left side of my chest was hurting

cary_s (Jun 16, 2009 6:08:42 PM)
DId they find anything wrong? your pacemaker? Hope things r ok

Pinky (Jun 16, 2009 6:09:47 PM)
That is where the pacemaker is at so I thought I might have pulled it out off is place but they said I just might have pulled a muscle

cary_s (Jun 16, 2009 6:10:10 PM)
oh

cary_s (Jun 16, 2009 6:10:27 PM)
chest still bother you still?

aimee_elizabeth (Jun 16, 2009 6:11:32 PM)
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cary_s (Jun 16, 2009 6:11:40 PM)
Hi aimee good to c u

aimee_elizabeth (Jun 16, 2009 6:12:01 PM)
hi

cary_s (Jun 16, 2009 6:12:12 PM)
how r things there aimee

Pinky (Jun 16, 2009 6:12:49 PM)
It never are was really painful just felt heavy

cary_s (Jun 16, 2009 6:13:03 PM)
oh

cary_s (Jun 16, 2009 6:13:48 PM)
heaviness gone?

aimee_elizabeth (Jun 16, 2009 6:13:52 PM)
crazy

cary_s (Jun 16, 2009 6:14:03 PM)
Crazy why?

cary_s (Jun 16, 2009 6:14:12 PM)
Or how? lol

cary_s (Jun 16, 2009 6:14:25 PM)
same here lol

Pinky (Jun 16, 2009 6:14:49 PM)
Not really gone......... but less now

cary_s (Jun 16, 2009 6:15:03 PM)
that's good

aimee_elizabeth (Jun 16, 2009 6:15:04 PM)
what happened pinky?

aimee_elizabeth (Jun 16, 2009 6:15:34 PM)
crazy busy

cary_s (Jun 16, 2009 6:15:54 PM)
that's good I guess :o)

aimee_elizabeth (Jun 16, 2009 6:17:12 PM)
mmm...

Pinky (Jun 16, 2009 6:17:14 PM)
Nothing wrong......... I think I pulled a chest muscle Amy

aimee_elizabeth (Jun 16, 2009 6:17:34 PM)
;ow

Pinky (Jun 16, 2009 6:20:04 PM)
I didn't pull it that bad so and it never really hurt............... I was just being safe and running to the doctor.............. I didn't really have to go

Pinky (Jun 16, 2009 6:21:25 PM)
It just really felt very heavy

cary_s (Jun 16, 2009 6:21:47 PM)
have you heard from bc

kelley (Jun 16, 2009 6:23:05 PM)
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Pinky (Jun 16, 2009 6:23:16 PM)
I got an e-mail from our bc................ I think she is not going to come to chat for A couple weeks

cary_s (Jun 16, 2009 6:23:16 PM)
Hi kell good to c u

Pinky (Jun 16, 2009 6:23:24 PM)
Hi Kelly

aimee_elizabeth (Jun 16, 2009 6:23:29 PM)
my dr put me in PT 2 x a wk, now ins. is whining

kelley (Jun 16, 2009 6:23:38 PM)
good evening ladies

cary_s (Jun 16, 2009 6:23:42 PM)
yes got same one from bc

cary_s (Jun 16, 2009 6:24:00 PM)
oh no aimee

aimee_elizabeth (Jun 16, 2009 6:24:01 PM)
hi kell

Erin1 (Jun 16, 2009 6:24:14 PM)
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kelley (Jun 16, 2009 6:24:36 PM)
aimee I have gone back to pt too

cary_s (Jun 16, 2009 6:24:43 PM)
dr. orders can't help it

Pinky (Jun 16, 2009 6:24:50 PM)
Why is it whining Amy?

cary_s (Jun 16, 2009 6:25:01 PM)
Hi erin good to c u how've u been?

aimee_elizabeth (Jun 16, 2009 6:25:07 PM)
hi erin

kelley (Jun 16, 2009 6:25:36 PM)
thats what ins companys do they are in the business to make money

Erin1 (Jun 16, 2009 6:25:53 PM)
hi, how have you all been

cary_s (Jun 16, 2009 6:26:04 PM)
ok thanks

kelley (Jun 16, 2009 6:26:19 PM)
good week erin yours?

aimee_elizabeth (Jun 16, 2009 6:26:30 PM)
they don't want to pi ;

aimee_elizabeth (Jun 16, 2009 6:27:01 PM)
pay pink

Pinky (Jun 16, 2009 6:27:57 PM)
I know.......... insurance companies are a pain

Pinky (Jun 16, 2009 6:28:13 PM)
Hey Erin

cary_s (Jun 16, 2009 6:28:14 PM)
yes

kelley (Jun 16, 2009 6:28:49 PM)
alot of times it depends on what is in your policy book, you have to meet their regs

cary_s (Jun 16, 2009 6:28:59 PM)
they wouldn't pay for back therapy for me

rosebud (Jun 16, 2009 6:29:54 PM)
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Pinky (Jun 16, 2009 6:30:05 PM)
I have been reading........ has anyone in here read the twilight books

cary_s (Jun 16, 2009 6:30:15 PM)
HI rosebud

rosebud (Jun 16, 2009 6:30:22 PM)
hi guys

kelley (Jun 16, 2009 6:30:25 PM)
hello rosebud

Erin1 (Jun 16, 2009 6:30:44 PM)
My neurologist is so lame, he basically asked me a whole bunch bof questions and wrote Rx and did not even check my reflexs or anything. I am so happy im getting a new Medical doctor

rosebud (Jun 16, 2009 6:30:54 PM)
this is my first time in this chat. I know I probably am in the wrong one but I am desperately looking ofr info

cary_s (Jun 16, 2009 6:31:44 PM)
Think u have been here before rosebud. U have ALS?

rosebud (Jun 16, 2009 6:31:58 PM)
erom1 I am with you I juste saw a nero I didn't like I am seeing someone else in 2 wks.

kelley (Jun 16, 2009 6:32:00 PM)
pull up a chair and I'll get you a cup of tea, and just talk

rosebud (Jun 16, 2009 6:32:24 PM)
I have searched so many places maybe I have. What my doc thinks I have is a form of als

rosebud (Jun 16, 2009 6:32:30 PM)
It is not as bad

kelley (Jun 16, 2009 6:32:38 PM)
diabedic ALS?

Pinky (Jun 16, 2009 6:32:45 PM)
I have not been to a neurologist in about nine years.......... I wonder if he still has my files

aimee_elizabeth (Jun 16, 2009 6:32:51 PM)
gee, sounds like mine erin

rosebud (Jun 16, 2009 6:32:53 PM)
a lot of docs haven't heard of what he thinks I have and I am trying to find research on it

cary_s (Jun 16, 2009 6:33:01 PM)
I see a neuro the 30th been awhile since I' ve seen one

kelley (Jun 16, 2009 6:33:43 PM)
after 9 years they go in storage but you can get your hands on them pinky

rosebud (Jun 16, 2009 6:33:57 PM)
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Erin1 (Jun 16, 2009 6:34:01 PM)
That's cool, I just started chatting last week too, for the same reason you are and i wanted to get to knowpeople who have what i have or similar to it anyway

aimee_elizabeth (Jun 16, 2009 6:34:23 PM)
good luck cary

cary_s (Jun 16, 2009 6:34:59 PM)
Saw one at MDA clinic said I should take idebenone have DNA test. NOw they say idebenone is no good. Why have the test if I got all the symptoms.

Erin1 (Jun 16, 2009 6:35:32 PM)
so one of the Rxs he wrote was for wrist splints

Erin1 (Jun 16, 2009 6:37:02 PM)
I am going to MDA clinic in September

cary_s (Jun 16, 2009 6:37:24 PM)
u can go to walmart and get wrist splints for around $5. That's what I did with out seeing anyone. Have handsplints but hands don't coooperate in them so I wear the wrist brace at night to keep them straight otherwise they hurt

Pinky (Jun 16, 2009 6:37:36 PM)
For me, I just think I am in the last stages of FA anyway so what good is seeing a neurologists going to do............. I know I sound depressed but really I like to think of it as being realistic

cary_s (Jun 16, 2009 6:38:32 PM)
the way I feel too. Dr said I should go see neuro tho so that's why I'm going

kelley (Jun 16, 2009 6:38:41 PM)
A cure for FA is not going to be in our lifetime

Pinky (Jun 16, 2009 6:39:34 PM)
Especially not in mine

aimee_elizabeth (Jun 16, 2009 6:39:44 PM)
gotta go, tc

cary_s (Jun 16, 2009 6:39:45 PM)
probably not

Erin1 (Jun 16, 2009 6:39:48 PM)
I have a question is it normal for someone with FA to get really lightheaded and dizzy when you bend over to pick something up

cary_s (Jun 16, 2009 6:39:55 PM)
gnight aimee tc have a good week

aimee_elizabeth (Jun 16, 2009 6:40:07 PM)
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cary_s (Jun 16, 2009 6:40:32 PM)
is with me erin

kelley (Jun 16, 2009 6:41:02 PM)
it is a central nervous system Erin and so yes it will be something that is difficulty

Pinky (Jun 16, 2009 6:41:16 PM)
I have no idea erin because I have been in a wheelchair for a long time

cary_s (Jun 16, 2009 6:41:16 PM)
bending over at all is kinda bad

Erin1 (Jun 16, 2009 6:41:52 PM)
My mom keeps telling me not to give up hope who know it miracously happen that they find a cure

cary_s (Jun 16, 2009 6:42:15 PM)
yes u never know

cary_s (Jun 16, 2009 6:43:18 PM)
We all get down sometimes tho. Without Hope what is there?

cary_s (Jun 16, 2009 6:43:48 PM)
Not much. Bleak.

Pinky (Jun 16, 2009 6:44:02 PM)
Erin you should be hoping because you are young and year FA is still new so don't let our thinking make you lose hope

Erin1 (Jun 16, 2009 6:44:11 PM)
It was so funny i hate doing exercises but i have to stay strong my sister couldn't even do some of the things i was doin

kelley (Jun 16, 2009 6:44:16 PM)
I take on day at t time, and just enjoy what brings me happiness, sunshine, music, flowers etc

cary_s (Jun 16, 2009 6:44:34 PM)
keep up the good work erin

cary_s (Jun 16, 2009 6:44:51 PM)
Yes kell good advice

cary_s (Jun 16, 2009 6:44:59 PM)
how old is your sis erin?

kelley (Jun 16, 2009 6:45:01 PM)
Erin I jog in the YMCA theraphy pool

Erin1 (Jun 16, 2009 6:45:10 PM)
thanx:)

Erin1 (Jun 16, 2009 6:45:45 PM)
she is thje same age as me 17

cary_s (Jun 16, 2009 6:45:59 PM)
u r a twin?

Erin1 (Jun 16, 2009 6:46:17 PM)
her name is heather

Erin1 (Jun 16, 2009 6:46:25 PM)
no

cary_s (Jun 16, 2009 6:46:47 PM)
pretty name

kelley (Jun 16, 2009 6:48:45 PM)
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Erin1 (Jun 16, 2009 6:48:48 PM)
i have one sis who is the same age as me and two older sisters Mary Anne18, and Mysti 21

cary_s (Jun 16, 2009 6:49:03 PM)
cool

cary_s (Jun 16, 2009 6:49:41 PM)
u all get along? :o) Know how sisters can be.

Erin1 (Jun 16, 2009 6:50:19 PM)
I don't talk to my oldest sister becuz she is a little messed up right now

cary_s (Jun 16, 2009 6:50:41 PM)
oh sorry to hear that

Pinky (Jun 16, 2009 6:51:00 PM)
If she is the same age as you then how come she is not in your twina

Erin1 (Jun 16, 2009 6:51:22 PM)
yeah but she wwill get it together

cary_s (Jun 16, 2009 6:51:37 PM)
ok that's good

Erin1 (Jun 16, 2009 6:52:45 PM)
She is 4 months older than me but technichally the same age we were born in the same year

Pinky (Jun 16, 2009 6:53:16 PM)
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Pinky (Jun 16, 2009 6:53:26 PM)
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cary_s (Jun 16, 2009 6:53:33 PM)
wb pinky

Erin1 (Jun 16, 2009 6:56:13 PM)
guyz i have togo i have remediation tommorrow i didn't pass my civics exam

Erin1 (Jun 16, 2009 6:56:23 PM)
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cary_s (Jun 16, 2009 6:56:30 PM)
good luck erin have a good week

cary_s (Jun 16, 2009 6:56:57 PM)
shall we call it a night pink gtg eat

Pinky (Jun 16, 2009 6:57:32 PM)
I am sorry I am a journalist so I am used to interviewing so forgive me for asking a lot of questions erin but how is that possible........... your sister being for months older

Pinky (Jun 16, 2009 6:58:10 PM)
oops

elliebedelia (Jun 16, 2009 6:58:32 PM)
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Pinky (Jun 16, 2009 6:58:43 PM)
She is already gone

elliebedelia (Jun 16, 2009 6:58:49 PM)
Hello and Good Evening everyone

Pinky (Jun 16, 2009 6:58:58 PM)
Hi Ella

cary_s (Jun 16, 2009 6:59:12 PM)
missed u star, rollin,princess

cary_s (Jun 16, 2009 6:59:27 PM)
Hi ellie good to c u how've u been?

Pinky (Jun 16, 2009 6:59:46 PM)
How are you

elliebedelia (Jun 16, 2009 7:00:36 PM)
I am doing well thankyou Hope we have some warmer weather soon

elliebedelia (Jun 16, 2009 7:01:01 PM)
Today was quite nice accually

elliebedelia (Jun 16, 2009 7:01:39 PM)
I can`t wait to have some fresh vegies from the garden

cary_s (Jun 16, 2009 7:01:50 PM)
nice here 70's sun/clouds off and on

cary_s (Jun 16, 2009 7:02:02 PM)
yes yum yum

elliebedelia (Jun 16, 2009 7:02:17 PM)
My new kitten Lexxie is a tortie and looking up about them online they seem to be quite a challenge

cary_s (Jun 16, 2009 7:02:45 PM)
speaking of foood got to go eat. mom has to go somewhere later

cary_s (Jun 16, 2009 7:02:56 PM)
cute ellie keep you busy lol

elliebedelia (Jun 16, 2009 7:03:03 PM)
70`s and sun and clouds is a really nice day for me

cary_s (Jun 16, 2009 7:03:11 PM)
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elliebedelia (Jun 16, 2009 7:03:25 PM)
bye cary

Pinky (Jun 16, 2009 7:03:37 PM)
It is already hot year and the 90s

elliebedelia (Jun 16, 2009 7:04:29 PM)
yes Pinky my daughter and family just returned fron Verginia beach and had a hot weekend there for vacation

elliebedelia (Jun 16, 2009 7:04:43 PM)
they loved it and can`t wait to go back

Pinky (Jun 16, 2009 7:05:07 PM)
Have you read the twilight books

elliebedelia (Jun 16, 2009 7:05:23 PM)
no and what are they about?

elliebedelia (Jun 16, 2009 7:05:48 PM)
would they be at the library?

Pinky (Jun 16, 2009 7:06:54 PM)
Falling in love with a vampire

elliebedelia (Jun 16, 2009 7:07:18 PM)
oh I really don`t like that kind of reading

elliebedelia (Jun 16, 2009 7:07:54 PM)
I like non=fiction and clean romance and clean westerns I guess I am a boring person

elliebedelia (Jun 16, 2009 7:09:45 PM)
Guess I need to say goodnight Pinky my eyes are bothering me

elliebedelia (Jun 16, 2009 7:09:56 PM)
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Pinky (Jun 16, 2009 7:10:53 PM)
They are so good to me............ and they are clean........... nothing throughout

Pinky (Jun 16, 2009 7:13:01 PM)
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Blackcat519 (Jun 16, 2009 7:20:45 PM)
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Blackcat519 (Jun 16, 2009 7:21:46 PM)
Hi,did I miss everyone again?

Blackcat519 (Jun 16, 2009 7:22:52 PM)
I try to get here as soon as I can.but needed to eat dinner first.

Blackcat519 (Jun 16, 2009 7:24:34 PM)
Ill check back in a few.going to transcripts.

Blackcat519 (Jun 16, 2009 7:24:42 PM)
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Blackcat519 (Jun 16, 2009 7:29:32 PM)
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Blackcat519 (Jun 16, 2009 7:32:42 PM)
Well, I guess nobody is coming so Ill go for now. I still have bad neck pain,Dr. trying different things to solve it. Sorry I missed you all my friends. Hello to all of you. Hugs!!

Blackcat519 (Jun 16, 2009 7:33:56 PM)
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