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Kathy,

Sorry to hear that your in a flare. We all go through that, and it

really stinks. You start feeling a little better, and due things you

enjoy, and then you have to go through this horrible flare. I will

keep you in my prayers, and hope that it passes soon. hugs Tawny

> well i guess i have overdone it and gone into a flare. i had the

wedding and

> the seminar last weekend. this ast weekend i went to a play, went

to the sec'y

> of state's office and shopping with a friend. i guess it's just a

little kick

> in the teeth to remember that i have a disease!! it started this

time with

> the 3 cortisone injections in my foot. my foot started to cramp up

and continued

> up my leg until yesterday it got to my hip, despite all my attemps

to stop it

> with heat and massage, muscle relaxors and tylenol 3's. so my son

drove me to

> chiro yesterday and i start therapy on my leg today. guess i didn't

realize i

> was that close to the edge. i didn't like it!!! kathy in il

>

>

>

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  • 4 weeks later...
Guest guest

Kathy, I will keep you in my prayers, Tawny

> ok guys, i'm deprssed again. i just came back from the foot dr. i

need to see

> a neurologist again. they are concerned with the muscle spasms i

have been

> having and my plantar facsitis is very tender. seems everytime i

have therapy on

> my foot and calf. i get spasms all down my left side. kathy in il

>

>

>

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Kathy,

I know what your going through with this depression thing, I am

feeling it too. I have got to much going on, and feeling like crap.

I hope they find out what is going on with the spasms. Have you made

an appointment with the Neurologist yet, don't put things off like

Tawny,lol? I feel like going crazy tonight, my daughter brought her

3 cats over, and it's a challenge. One hasn't stopped meowing, the

other has tore one blind up so far. I have been scratched all over

my arms,(two are kittens)I am just nuts tonight. Hopefully, they

will calm down. I would like to take a trip to the bahamas right now.

I am in so much pain, I can't hardly deal with much more. I am

really upset, I don't think the Humira is working for me.

Sorry, to overload on you, I need someone to tell my sob story

to,lol You take care of yourself girl, and I will be praying for

you, hugs Tawny

> ok guys, i'm deprssed again. i just came back from the foot dr. i

need to see

> a neurologist again. they are concerned with the muscle spasms i

have been

> having and my plantar facsitis is very tender. seems everytime i

have therapy on

> my foot and calf. i get spasms all down my left side. kathy in il

>

>

>

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hey tawny not a problem. that is what we are here for. my cat scratched me up

pretty bad last night too!! wonder what was in the air for them last

night?!?!? i will call the neurologist today and i also get my dexa scan today.

kathy

in il

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Kathy~

I know that things like this can get you down and depressed, but try to

rememeber that that isn't going to solve anything. And I know that that is hard

to realize, but it is so true. Just like everything else, that you and I and

everyone else in this wonderful support group deal with, it is just another

stepping stone that we have to get passed. And the best advice is that you can

do it as long as you have friends and family and of course us!

Your in my thoughts!

Jillian in Northern IL

kringlemom@... wrote:

ok guys, i'm deprssed again. i just came back from the foot dr. i need to see

a neurologist again. they are concerned with the muscle spasms i have been

having and my plantar facsitis is very tender. seems everytime i have therapy on

my foot and calf. i get spasms all down my left side. kathy in il

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i know i can get through this again. just can't believe i have to start all

over again. but alot of that is my last wonderful podiatrist fault. perhaps if

he wasn't a cocaine addict he would have done better surgery and i wouldn't

have had to find another job and dr. i got in to the neurologist on tuesday so i

have to switch my day off but oh well. i went for the dexa scan today. she

said it looked good. but i was so stiff and sore i could hardly get up off the

table. the weather is cold and damp. i have been running all week. was supposed

to attend a party tonight, but decided against it. it's almost an hour drive.

i don't feel well. it's damp and looking like it might be foggy tonight.just

gonna stay home and rest. (sure already did my dishes for the week!! and a

load of laundry!!) my feet have been so sore havenb't been able to stand very

long. after laying on the table, it felt good to stand for awhile. Kathy in

il

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Kathy,

You just relax for the weekend, and hope you start feeling better

soon. I'm glad the dexa scan looked good. Good luck at the

neurologist, hugs Tawny

> i know i can get through this again. just can't believe i have to

start all

> over again. but alot of that is my last wonderful podiatrist fault.

perhaps if

> he wasn't a cocaine addict he would have done better surgery and i

wouldn't

> have had to find another job and dr. i got in to the neurologist on

tuesday so i

> have to switch my day off but oh well. i went for the dexa scan

today. she

> said it looked good. but i was so stiff and sore i could hardly get

up off the

> table. the weather is cold and damp. i have been running all week.

was supposed

> to attend a party tonight, but decided against it. it's almost an

hour drive.

> i don't feel well. it's damp and looking like it might be foggy

tonight.just

> gonna stay home and rest. (sure already did my dishes for the

week!! and a

> load of laundry!!) my feet have been so sore havenb't been able to

stand very

> long. after laying on the table, it felt good to stand for

awhile. Kathy in

> il

>

>

>

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Hey Kathy,

How about if I say a few prayers for the sun to come out and warm your feet. I

know what cold, drizzly weather can do to your pain. I lived in Maine for 40

years and the winters were bruttle. I am now in Az. Much better for RA. Hope

tomorrow is better.

Hugs

Judith Ann

kringlemom@... wrote:

i know i can get through this again. just can't believe i have to start all

over again. but alot of that is my last wonderful podiatrist fault. perhaps if

he wasn't a cocaine addict he would have done better surgery and i wouldn't

have had to find another job and dr. i got in to the neurologist on tuesday so i

have to switch my day off but oh well. i went for the dexa scan today. she

said it looked good. but i was so stiff and sore i could hardly get up off the

table. the weather is cold and damp. i have been running all week. was supposed

to attend a party tonight, but decided against it. it's almost an hour drive.

i don't feel well. it's damp and looking like it might be foggy tonight.just

gonna stay home and rest. (sure already did my dishes for the week!! and a

load of laundry!!) my feet have been so sore havenb't been able to stand very

long. after laying on the table, it felt good to stand for awhile. Kathy in

il

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thanks tawny i am resting. i did not go to my sisters last night. i stayed in

and watched a movie. i was going to go into work today since i will lose 5

hours of pay by switching my day off. but it's still wet, damp and chilly. my

hands and wrists ache. so just gonna deal with the lack of pay, or maybe try to

do some overtime monday and maybe go in before dr and after on tuesday. i just

don't feel like it. tired and sore. kathy in il

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i wondered how i would survive the winter and work. it was always the hardest

when it was changing to spring. but except for this weekend it hasn't been

too bad. i think i am just working too many hours for my body. (but ill someone

explain that to my checkbook?!) kathy in il

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  • 4 weeks later...
Guest guest

Kathy, I will keep you in my prayers, take care Tawny

> today i got a call from my internist office. they said the emg

report shows

> nerve damage in my legs and they want me on neurontin 100 mgs twice

a day. i

> asked about the physical therapy and they will see if the dr will

write the

> script for me. i have also called my rheumi's office for them to do

some research

> for me. i was on neurontin before. don't remember when, how much or

why i

> stopped. so hopefully they can find out for me. kathy in il

>

>

>

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  • 2 weeks later...
Guest guest

Hi ! I don't mind answering your questions at all. We have been following

a modified NIDs diet since October 2002. Basically, it involves no dairy (i.e.

casein -- Dr. G says " If it comes from a cow and it's not meat, don't give it to

him. " ), no whole grains (I did go GF for a while but saw no real change so he

does get some gluten, but only through highly processed products like Wonder

Bread, noodles, etc. and not much of it/not every day), no chocolate, no red

fruits (like berries), no tropical fruit, very reduced sugar. We have modified

the NIDs diet only in that it says no nuts because they are one of the big

allergens, but since he has no nut allergies he gets a bit of peanut butter

(about once or twice a month) and I don't worry if there are nuts listed in the

ingredients of what he is eating.

He likes soy milk, calcium enhanced orange juice (25% juice, 75% water), all

kinds of meat, veggies, bananas, apples, pear, peaches, non-dairy butter on his

GFCF waffles, Cheerios, plain chips, pretzels, etc. It isn't to hard to follow

at all and I think he eats better than my two older children who are not NIDs.

He also takes a daily iron supplement.

In terms of meds, Dr. G started our son on an anti-viral first. His HHV6 numbers

were overly elevated -- he had roseola (from the HHV6 family) right after his

MMR shot and seemed to go downhill after that although I did see some subtle

signs of problems before his first birthday. We saw improvements within a few

days of introducing an anti-viral in terms of better eye contact, better

receptive language. His muscle tone improved right away as well, as he became

more active and energetic. I was constantly told he had poor/low muscle tone,

but now he's great (I wish my legs were as toned as his!). He was later also put

on an anti-fungal (first Nizoral, then Diflucan, now Lamasil). He rotates them

so their system doesn't get too used to it and they remain effective. The

anti-fungals seem to help my son with his receptive language and he is much

chattier on them, especially on Diflucan (he is non-verbal and uses PECs to

communicate). Unfortunately, our monthly blood work showed that his liver didn't

take too kindly to Diflucan and we had to eliminate that one. I like the fact

that Dr. G monitors the kids' bloodwork so thoroughly.

We have just recently introduced a very low dose of Paxil. In Dr. G's experience

(and other doctors as well -- here in Canada, one of the leading childrens

hospitals is doing a study of this), SSRIs given in very low doses seem to help

our kids become aware and more alert. Since giving Paxil to our son, he has

improved in leaps and bounds in his ABA therapy, has taken interest in a couple

of TV programs that he only ever watched during the intro and the end (i.e.

rolling credits), he is following multi-task directions like " Go pat the cat "

when before I would say " Touch cat " and he would look at me blankly and walk

away, never even showing that he understood there was a cat in the room or,

further, what a cat was. He is also doing things that are driving me crazy, but

are good indications of developmental improvements, like climbing everything in

sight to get at things that are out of reach. His progress has been slow but

steady and we are pleased with how things are going so far.

Some of this may not be as well explained as it could be by others who comment

on the list and have better medical knowledge. Anyone who wants to jump in,

please do. Are you following the NIDs protocol? Do you see Dr. G?

I hope this helps.

Rhoda

(no subject)

Dear Rhoda

You mentioned that your son does not have food allergies/sensitivities, but

has some gut issues. Does this mean you are or are not doing a GFCF diet? Is

it possible to use biomedical interventions, and not do the diet?

Also you mentioned SSRIs. What are you using. Why are you using it ? and

what positive effects does it seem to have for your son?

Sorry about all the questions!

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Guest guest

I thank the new comers for bringing up nagging questions. I also have been

on a GFCF diet buit I am confused about thee whole grain verses the glutten

free aspects.

Several discrepencies have been troublesome:

First and for most, are Cherios - Whole Oats- There are no rice or corn

substitutes that reseeemble Cherios - circular cerial.

My kid is nuts for Cherios the but being a grian in the northern european

wheat, rye, oats, spelt fami;y they are heavy in glutteen and are made from

whole grains - Can I or can I not feed cherios to my son? - I have been

avoiding them.

Tropical Fruits - red or not - bannanas? - Citrus? / OR pinapple and mango?

Tropical? What hemisphere and why?

Nutss? - We show no nut allergens - peanut or others - are they still

problematic?

Noodles - I have found this the easiest glutten product to replace - potatoe

or rice pasts is availble at our local G-store_

what is highly processe? All of the wheat based noodles state 100% wheat? I

assume whole grain.

Dye - Exaactly whaat Dyes- Red # 40 or Red # 43, Yellow # 23. I havee been

told only two of the die bases aare problematic. Red and yellow but EXACTLY

WHAT NUMBERS?

Our progress has been slow but steady. Connor is six but still none verbal.

With the diet outline being so gray I question every decision I make and

regret every regression. It seems to get harder not easier. We haave wworked

down his availble foods to the point where her can not join his classmates

in a mainstream cafiteria setting with-out having behavioral problems.

His progess is greaat to see but I don't see him catching up just continuing

to fall behind. We just lost our summer day care due to food

issues(Mainstream would not deal with the diet)and have replaced it at $900

a month.

Bill

Re: (no subject)

Hi ! I don't mind answering your questions at all. We have been

following a modified NIDs diet since October 2002. Basically, it involves no

dairy (i.e. casein -- Dr. G says " If it comes from a cow and it's not meat,

don't give it to him. " ), no whole grains (I did go GF for a while but saw no

real change so he does get some gluten, but only through highly processed

products like Wonder Bread, noodles, etc. and not much of it/not every day),

no chocolate, no red fruits (like berries), no tropical fruit, very reduced

sugar. We have modified the NIDs diet only in that it says no nuts because

they are one of the big allergens, but since he has no nut allergies he gets

a bit of peanut butter (about once or twice a month) and I don't worry if

there are nuts listed in the ingredients of what he is eating.

He likes soy milk, calcium enhanced orange juice (25% juice, 75% water), all

kinds of meat, veggies, bananas, apples, pear, peaches, non-dairy butter on

his GFCF waffles, Cheerios, plain chips, pretzels, etc. It isn't to hard to

follow at all and I think he eats better than my two older children who are

not NIDs. He also takes a daily iron supplement.

In terms of meds, Dr. G started our son on an anti-viral first. His HHV6

numbers were overly elevated -- he had roseola (from the HHV6 family) right

after his MMR shot and seemed to go downhill after that although I did see

some subtle signs of problems before his first birthday. We saw improvements

within a few days of introducing an anti-viral in terms of better eye

contact, better receptive language. His muscle tone improved right away as

well, as he became more active and energetic. I was constantly told he had

poor/low muscle tone, but now he's great (I wish my legs were as toned as

his!). He was later also put on an anti-fungal (first Nizoral, then

Diflucan, now Lamasil). He rotates them so their system doesn't get too used

to it and they remain effective. The anti-fungals seem to help my son with

his receptive language and he is much chattier on them, especially on

Diflucan (he is non-verbal and uses PECs to communicate). Unfortunately, our

monthly blood work showed that his liver didn't take too kindly to Diflucan

and we had to eliminate that one. I like the fact that Dr. G monitors the

kids' bloodwork so thoroughly.

We have just recently introduced a very low dose of Paxil. In Dr. G's

experience (and other doctors as well -- here in Canada, one of the leading

childrens hospitals is doing a study of this), SSRIs given in very low doses

seem to help our kids become aware and more alert. Since giving Paxil to our

son, he has improved in leaps and bounds in his ABA therapy, has taken

interest in a couple of TV programs that he only ever watched during the

intro and the end (i.e. rolling credits), he is following multi-task

directions like " Go pat the cat " when before I would say " Touch cat " and he

would look at me blankly and walk away, never even showing that he

understood there was a cat in the room or, further, what a cat was. He is

also doing things that are driving me crazy, but are good indications of

developmental improvements, like climbing everything in sight to get at

things that are out of reach. His progress has been slow but steady and we

are pleased with how things are going so far.

Some of this may not be as well explained as it could be by others who

comment on the list and have better medical knowledge. Anyone who wants to

jump in, please do. Are you following the NIDs protocol? Do you see Dr. G?

I hope this helps.

Rhoda

(no subject)

Dear Rhoda

You mentioned that your son does not have food allergies/sensitivities,

but

has some gut issues. Does this mean you are or are not doing a GFCF diet?

Is

it possible to use biomedical interventions, and not do the diet?

Also you mentioned SSRIs. What are you using. Why are you using it ? and

what positive effects does it seem to have for your son?

Sorry about all the questions!

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  • 1 month later...
Guest guest

Judy, That sounds like a wonderful idea to me. I could not imagine

keeping up with a house that big.

That dream home sounds so exciting, if I was you I would take the

plunge! No work and pools sound really great.

Thinking about moving is such a terrible subject, but when your done,

I think you and your hubby will be happy.

> Hi everyone...I don't post much as I am a quiet one by nature. But

I was glad

> the discussion of moving came up.

> My husband and I live in a 4 bedroom, 3 bath house where we raised

our 4

> kids, now all out on their own. The house is 3 levels and the

stairs kill me. We

> keep talking about downsizing but never knew what we wanted. My

husband has

> major health problems so it scares me to move to a strange

neighborhood too.

> Two weeks ago, we found a dream come true for us. It is a new

subdivision for

> 55 and over with only ranches going up. We are both 56. It will

have an

> indoor and outdoor pool and if anyone has ever gone to water

classes you know how

> soothing it is.

> I am, however, kind of worried about leaving my house and all of

its

> memories. Then I think of no stairs and no outside work and I am

turned around. I

> guess moving is one of the traumatic experiences in our life and

maybe I am

> normal.

> All I do know is that I go round and round and the house won't even

be ready

> until January. That of course is a good thing because there is lots

of packing

> and getting rid of things in the future months, while trying to

avoid a

> flare. I am rambling as I try to convince myself. See why I don't

write often?

> Judy

>

>

>

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Guest guest

Judy,

I know just how you feel. I can't wait until we can move so I don't have to

cope with stairs. But in our area, there are only condos and townhouses with 2

stories. Now I ask you, why would anyone in their right mind build a

subdivision for seniors and only put in homes with stairs?

I've designed our retirement house, and we'd like to build it. It's exactly

what we want, is HC accessible, and has all the rooms I would spend most of my

time in very close to each other. Finding land is difficult, and sometimes the

land costs more than the house!

But at the same time, we built the home we live in, and have been here 25

years. Over half our neighbors also built their homes, and leaving them, the

house with all its memories, and my gardens, where I've spent so much time and

which I love so much, well, it's going to be very hard.

I talked with my Mom, who's 85, and she said you don't leave the memories

with the house; you take them with you. She's also suggested we put a clause in

any contract for the house that I can take up to a certain number of rose

bushes, peonies and perennials with me when we move. It would depend on whether

the new owners are into gardening. Most probably won't be.

Right now, we're working on downsizing. Room by room, I'm going through

closets, dressers, etc. and getting rid of at least half of what we have. Once

I'm done, I'm going to start over, and get rid of another half. Less " stuff "

will mean less work, and an easier time when we do move.

The nice thing about moving to a new subdivision is that everyone else is

new too, so making new friends is much easier. And you'll make pool buddies

too.

It sounds like a wonderful move for you!

Dix

[ ] (no subject)

Hi everyone...I don't post much as I am a quiet one by nature. But I was glad

the discussion of moving came up.

My husband and I live in a 4 bedroom, 3 bath house where we raised our 4

kids, now all out on their own. The house is 3 levels and the stairs kill me.

We

keep talking about downsizing but never knew what we wanted. My husband has

major health problems so it scares me to move to a strange neighborhood too.

Two weeks ago, we found a dream come true for us. It is a new subdivision for

55 and over with only ranches going up. We are both 56. It will have an

indoor and outdoor pool and if anyone has ever gone to water classes you know

how

soothing it is.

I am, however, kind of worried about leaving my house and all of its

memories. Then I think of no stairs and no outside work and I am turned

around. I

guess moving is one of the traumatic experiences in our life and maybe I am

normal.

All I do know is that I go round and round and the house won't even be ready

until January. That of course is a good thing because there is lots of packing

and getting rid of things in the future months, while trying to avoid a

flare. I am rambling as I try to convince myself. See why I don't write often?

Judy

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Guest guest

Judy,

Change is always a scary thing but this sounds like a perfect place for you.

Just think about all the good points-starting over - cleaning out - and how much

better it will be for you both. It is normal to have doubts. My husband and i

have discussed moving from upstate NY to NC when he retires and I panic!!! LOL.

Hang in there!

LambyQ@... wrote:

Hi everyone...I don't post much as I am a quiet one by nature. But I was glad

the discussion of moving came up.

My husband and I live in a 4 bedroom, 3 bath house where we raised our 4

kids, now all out on their own. The house is 3 levels and the stairs kill me. We

keep talking about downsizing but never knew what we wanted. My husband has

major health problems so it scares me to move to a strange neighborhood too.

Two weeks ago, we found a dream come true for us. It is a new subdivision for

55 and over with only ranches going up. We are both 56. It will have an

indoor and outdoor pool and if anyone has ever gone to water classes you know

how

soothing it is.

I am, however, kind of worried about leaving my house and all of its

memories. Then I think of no stairs and no outside work and I am turned around.

I

guess moving is one of the traumatic experiences in our life and maybe I am

normal.

All I do know is that I go round and round and the house won't even be ready

until January. That of course is a good thing because there is lots of packing

and getting rid of things in the future months, while trying to avoid a

flare. I am rambling as I try to convince myself. See why I don't write often?

Judy

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Guest guest

, North Carolina is a good place to live, so come on down. I live

in the piedmont section and have the ocean to the east and the

mountains to the west. Where we live, we have some very old, small

mountains plus a few hills. It really is a beautiful state.

Sue

On Monday, July 12, 2004, at 08:39 PM, M. wrote:

> My husband and i have discussed moving from upstate NY to NC when he

> retires and I panic!!! LOL. Hang in there!

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Guest guest

When we built our house 10 years ago we built a ranch with everything on one

floor. We have a finished basement too with a full bath and kitchen so it's

another apartment if need be someday. My father was an invalid in his early

50's so we built with that in mind. They had 3 levels too and had to sell

because of the stairs. It was hard for them but really best, financially and

everything else. It was hard for me to see it go to someone else but you will

get over that. We sold our last two homes in our town, the first where all of

our children first lived after they were born, our second during their early

childhood years, and now here. The youngest were 5 when we moved in. We named

the road after our daughter so I do think it might be hard to leave here just

because of that. I could let go other than that so I'm hoping to pass it along

to one of our children as we have some acreage and it's rare around here to have

that.

Becky

[ ] (no subject)

Hi everyone...I don't post much as I am a quiet one by nature. But I was glad

the discussion of moving came up.

My husband and I live in a 4 bedroom, 3 bath house where we raised our 4

kids, now all out on their own. The house is 3 levels and the stairs kill me.

We

keep talking about downsizing but never knew what we wanted. My husband has

major health problems so it scares me to move to a strange neighborhood too.

Two weeks ago, we found a dream come true for us. It is a new subdivision for

55 and over with only ranches going up. We are both 56. It will have an

indoor and outdoor pool and if anyone has ever gone to water classes you know

how

soothing it is.

I am, however, kind of worried about leaving my house and all of its

memories. Then I think of no stairs and no outside work and I am turned

around. I

guess moving is one of the traumatic experiences in our life and maybe I am

normal.

All I do know is that I go round and round and the house won't even be ready

until January. That of course is a good thing because there is lots of packing

and getting rid of things in the future months, while trying to avoid a

flare. I am rambling as I try to convince myself. See why I don't write often?

Judy

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Guest guest

Sue,

You have definitely made me feel more at ease about NC!!!! Which part of the

state is the piedmont section. We have been looking near Greenville-Ayden, etc.

Thanks.

Sue <marysue@...> wrote:

, North Carolina is a good place to live, so come on down. I live

in the piedmont section and have the ocean to the east and the

mountains to the west. Where we live, we have some very old, small

mountains plus a few hills. It really is a beautiful state.

Sue

On Monday, July 12, 2004, at 08:39 PM, M. wrote:

> My husband and i have discussed moving from upstate NY to NC when he

> retires and I panic!!! LOL. Hang in there!

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The piedmont is in the middle of the state. I'm not sure how far it

extends both ways, but I live in son County. Towns nearby are

ville, Lexington, and Winston-Salem. High Point and Greensboro

are not far away.

I grew up in ston County, which is not all that far from Greenville.

Sue

On Tuesday, July 13, 2004, at 03:25 PM, M. wrote:

> Sue,

> You have definitely made me feel more at ease about NC!!!! Which part

> of the state is the piedmont section. We have been looking near

> Greenville-Ayden, etc. Thanks.

>

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Guest guest

-If everybody moves there it won't be beatiful for

long and it won't be affordable either. Central NJ was

a great place to live back in the 60's it still

deserved to be called the Garden state. No more all

they grow now is expensive housing developements and

malls- this especially excellerated in the 80's. I

only stay cuase what family I have is here.

-- Sue <marysue@...> wrote:

> , North Carolina is a good place to live, so

> come on down. I live

> in the piedmont section and have the ocean to the

> east and the

> mountains to the west. Where we live, we have some

> very old, small

> mountains plus a few hills. It really is a beautiful

> state.

>

> Sue

>

> On Monday, July 12, 2004, at 08:39 PM, M.

> wrote:

>

> > My husband and i have discussed moving from

> upstate NY to NC when he

> > retires and I panic!!! LOL. Hang in there!

>

>

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