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In a message dated 7/16/2000 12:11:18 PM Pacific Daylight Time,

liliwigg@... writes:

<< Has anyone found that their CMT has brought their family closer

together? Or, has your CMT torn your family upside down?

Gretchen

>>

So far both

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Since discovering CMT my mother can't handle it. I rarely see her although she

lives a mile away from and get maybe one or two phone calls a week and that is

usually when she wants something. My mother is 63 with arthritis and asthma

although she can walk well and frequently walks miles but the messages she gives

me is I can't be more ill than she is.

My Father understood only on the 7 Jul 00 that he too had CMT and he is

finding it difficult to come to terms with the fact that it is on his side and

also that the doctors misdiagnosed and me and completely ignored the signs,

stork shaped legs and deformed feet from birth.

There are many things that have pulled my family apart these past five

years, perhaps the main thing is that they don't like my partner so they

tended to avoid before I became ill and now, even if I need their help I won't

ring them, I'll ask a friend or wait until the children come home.

Sad maybe but its a fact of my life and sometimes you're better off without

them. I know I am because it causes me much pain and hassle and it's their loss

not mine.

Love Sue XXXX

Re: closer with family?

In a message dated 7/16/2000 12:11:18 PM Pacific Daylight Time,

liliwigg@... writes:

<< Has anyone found that their CMT has brought their family closer

together? Or, has your CMT torn your family upside down?

Gretchen

>>

So far both

--------------------------------------------------------------------------------

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In a message dated 7/16/00 12:11:26 PM Pacific Daylight Time,

liliwigg@... writes:

<< Has anyone found that their CMT has brought their family closer

together? Or, has your CMT torn your family upside down?

Gretchen >>

************************************

Hi Gretchen, I have two answers for you. Since I have two family's.

1st Family: My parents and Brothers and Sister.....

With everyone married and settled down I have a lot more support from my

brothers and sister now compared to when I was a kid. Mainly because they

resented having to help me. However my Mom was always as supportive as she

knew how to be. And now she is an angel, she is always there if I need her

and even if I don't need her.

2nd Family: My hubby and 2 kids.....

I feel my CMT has torn my family apart. We were O.K. until my hands started

to go and that made my ability to do a lot of things stop. I could no longer

do yard work, I could no longer do a lot of things in the kitchen. So my

hubby and kids had to take up the slack. This caused resentment and anger.

Even for me I have resentment and anger towards them because they don't

understand that I'm not lazy, I would do the different items if I could. At

times I still attempt and pay for it dearly with pain. Then my hubby gets

onto me because I hurt.... But yet, he wouldn't do it.

My daughter hates to go shopping with me because of my wheelchair and my son

is embarrassed by me not being able to get around. My hubby gets exasperated

when he has to run into the store because I'm to tired to walk.

Yes, my CMT has screwed up my life, but I've learned and am learning to live

and to survive. At times I am a fighter and dig in deep to survive. Then I

get fatigued and I fall apart.

But, because of you all, I have survived. THANK-YOU ALL SO VERY MUCH...

Jeanie

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In a message dated 7/16/00 12:11:26 PM Pacific Daylight Time,

liliwigg@... writes:

<< Has anyone found that their CMT has brought their family closer

together? Or, has your CMT torn your family upside down?

Gretchen >>

************************************

Hi Gretchen, I have two answers for you. Since I have two family's.

1st Family: My parents and Brothers and Sister.....

With everyone married and settled down I have a lot more support from my

brothers and sister now compared to when I was a kid. Mainly because they

resented having to help me. However my Mom was always as supportive as she

knew how to be. And now she is an angel, she is always there if I need her

and even if I don't need her.

2nd Family: My hubby and 2 kids.....

I feel my CMT has torn my family apart. We were O.K. until my hands started

to go and that made my ability to do a lot of things stop. I could no longer

do yard work, I could no longer do a lot of things in the kitchen. So my

hubby and kids had to take up the slack. This caused resentment and anger.

Even for me I have resentment and anger towards them because they don't

understand that I'm not lazy, I would do the different items if I could. At

times I still attempt and pay for it dearly with pain. Then my hubby gets

onto me because I hurt.... But yet, he wouldn't do it.

My daughter hates to go shopping with me because of my wheelchair and my son

is embarrassed by me not being able to get around. My hubby gets exasperated

when he has to run into the store because I'm to tired to walk.

Yes, my CMT has screwed up my life, but I've learned and am learning to live

and to survive. At times I am a fighter and dig in deep to survive. Then I

get fatigued and I fall apart.

But, because of you all, I have survived. THANK-YOU ALL SO VERY MUCH...

Jeanie

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In a message dated 7/16/00 12:11:26 PM Pacific Daylight Time,

liliwigg@... writes:

<< Has anyone found that their CMT has brought their family closer

together? Or, has your CMT torn your family upside down?

Gretchen >>

************************************

Hi Gretchen, I have two answers for you. Since I have two family's.

1st Family: My parents and Brothers and Sister.....

With everyone married and settled down I have a lot more support from my

brothers and sister now compared to when I was a kid. Mainly because they

resented having to help me. However my Mom was always as supportive as she

knew how to be. And now she is an angel, she is always there if I need her

and even if I don't need her.

2nd Family: My hubby and 2 kids.....

I feel my CMT has torn my family apart. We were O.K. until my hands started

to go and that made my ability to do a lot of things stop. I could no longer

do yard work, I could no longer do a lot of things in the kitchen. So my

hubby and kids had to take up the slack. This caused resentment and anger.

Even for me I have resentment and anger towards them because they don't

understand that I'm not lazy, I would do the different items if I could. At

times I still attempt and pay for it dearly with pain. Then my hubby gets

onto me because I hurt.... But yet, he wouldn't do it.

My daughter hates to go shopping with me because of my wheelchair and my son

is embarrassed by me not being able to get around. My hubby gets exasperated

when he has to run into the store because I'm to tired to walk.

Yes, my CMT has screwed up my life, but I've learned and am learning to live

and to survive. At times I am a fighter and dig in deep to survive. Then I

get fatigued and I fall apart.

But, because of you all, I have survived. THANK-YOU ALL SO VERY MUCH...

Jeanie

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Hi Jeanie,

I empathized with you when you talked of how your husband and kids deal with

the CMT. I am estranged from my family; they never did deal with my

disability very well. When I had to start using a wheelchair to do many

things my younger sister was never there for me...she was uncomfortable

around me, I felt. My mother always felt guilty about me being the disabled

one in the family (no one else in my family has CMT) and she always made me

feel guilty too. It took a long time for me to realize that this is their

problem, not mine. I have a brother who was never there for me, in fact now

he is worse than ever. He is an abusive alcoholic and the family has turned

completely against me because I had to get a restraining order against him.

It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. Since my father died six years ago, I have not

felt like I have much of a family. I do have a terrific aunt and uncle on my

father's side of the family who support and love me. I also have the best

friends in the world...they are my family. I just wanted you to know that I

really understand...

Kathleen in Brooklyn

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Hi Jeanie,

I empathized with you when you talked of how your husband and kids deal with

the CMT. I am estranged from my family; they never did deal with my

disability very well. When I had to start using a wheelchair to do many

things my younger sister was never there for me...she was uncomfortable

around me, I felt. My mother always felt guilty about me being the disabled

one in the family (no one else in my family has CMT) and she always made me

feel guilty too. It took a long time for me to realize that this is their

problem, not mine. I have a brother who was never there for me, in fact now

he is worse than ever. He is an abusive alcoholic and the family has turned

completely against me because I had to get a restraining order against him.

It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. Since my father died six years ago, I have not

felt like I have much of a family. I do have a terrific aunt and uncle on my

father's side of the family who support and love me. I also have the best

friends in the world...they are my family. I just wanted you to know that I

really understand...

Kathleen in Brooklyn

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Hi Jeanie,

I empathized with you when you talked of how your husband and kids deal with

the CMT. I am estranged from my family; they never did deal with my

disability very well. When I had to start using a wheelchair to do many

things my younger sister was never there for me...she was uncomfortable

around me, I felt. My mother always felt guilty about me being the disabled

one in the family (no one else in my family has CMT) and she always made me

feel guilty too. It took a long time for me to realize that this is their

problem, not mine. I have a brother who was never there for me, in fact now

he is worse than ever. He is an abusive alcoholic and the family has turned

completely against me because I had to get a restraining order against him.

It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. Since my father died six years ago, I have not

felt like I have much of a family. I do have a terrific aunt and uncle on my

father's side of the family who support and love me. I also have the best

friends in the world...they are my family. I just wanted you to know that I

really understand...

Kathleen in Brooklyn

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Torn the family upside/insideout/over and under!!

Let's hope I can do better with my kids, etc. Marc

closer with family?

> Has anyone found that their CMT has brought their family closer

> together? Or, has your CMT torn your family upside down?

>

> Gretchen

>

> ------------------------------------------------------------------------

> BTW: Did you buy that new car yet?

> If not, check this site out.

> They're called CarsDirect.com and it's a pretty sweet way to buy a car.

> http://click.egroups.com/1/6847/13/_/616793/_/963774606/

> ------------------------------------------------------------------------

>

>

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Torn the family upside/insideout/over and under!!

Let's hope I can do better with my kids, etc. Marc

closer with family?

> Has anyone found that their CMT has brought their family closer

> together? Or, has your CMT torn your family upside down?

>

> Gretchen

>

> ------------------------------------------------------------------------

> BTW: Did you buy that new car yet?

> If not, check this site out.

> They're called CarsDirect.com and it's a pretty sweet way to buy a car.

> http://click.egroups.com/1/6847/13/_/616793/_/963774606/

> ------------------------------------------------------------------------

>

>

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Torn the family upside/insideout/over and under!!

Let's hope I can do better with my kids, etc. Marc

closer with family?

> Has anyone found that their CMT has brought their family closer

> together? Or, has your CMT torn your family upside down?

>

> Gretchen

>

> ------------------------------------------------------------------------

> BTW: Did you buy that new car yet?

> If not, check this site out.

> They're called CarsDirect.com and it's a pretty sweet way to buy a car.

> http://click.egroups.com/1/6847/13/_/616793/_/963774606/

> ------------------------------------------------------------------------

>

>

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Kathleen, thank-you for your understanding.

My husband sees me as a whiner. In his eyes I guess I would be. But after

awhile a person really gets fed up with family not listening and behaving in

a manor that would be supportive.

EXAMPLE: My hubby wanted to take me out to a movie last week with some free

tickets he had picked up. I thought that was great and eagerly accepted the

date. He told me to check the times and movies and let him know what I found.

(He always has me do the work with setting anything up).

Well, I found the movie and time. He agreed. He was busy working outside and

so would need to take a shower before leaving. (We also needed enough time to

go to a restuarant to eat). The movie started at 6pm. At 3:45 pm I asked him

to come in and get ready. I reminded him that we needed time to eat. At 4:45

he comes in. At 5p.m. were walking out the door. We had to pick a restuarant

on the way that served food fast. We couldn't enjoy our meal and we got to

the theatre when it was sstarting. This was on a Saturday night... Very busy.

So had to wait in line. The movie was to last 2 3/4 hrs. Needless to say I

was very stressed and upset that my hubby was being so inconsiderate.

SOOOOOO

Yesterday I finally nailed him with my complaint after 1 weeks time. I wrote

it out and read it so I wouldn't leave anything out and he wouldn't be able

to interupt me.

I told him that I knew he saw me as a whiner and that I got stressed to

easily and that was my problem. But it became his problem when I tried to get

him to come in earlier so that I wouldn't be stressed. I told him I had to

hurry and eat, I couldn't enjoy my food and drink. I had a margarita and

really needed to sit another 15min. or so before walking. But, no time.

Then we get to the theatre. I need his arm but if he doesn't get in line

immediately it will add 10 minutes to get seated. SO he goes to the window

and I walk in by myself. He wanted popcorn, but I knew the movie might

already be started (in other words it could already be dark). Plus I needed

the bathroom. But because I can't walk in the dark I didn't use the bathroom

and I walked the hallway by myself to get into the theatre. The lights went

off just as I sat down.

I told him that he might not think about the dark or the need of the restroom

since he can RUN and probably get back before the previews were over. But, I

couldn't.

Needless to say I was bawling because I couldn't and can't understand how he

can't be considerate. We've been married for 18 years.

I should say good-bye, Jeanie

***********

In a message dated 7/16/00 11:15:48 PM Pacific Daylight Time,

UniqueCMT@... writes:

<< It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. >>

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Kathleen, thank-you for your understanding.

My husband sees me as a whiner. In his eyes I guess I would be. But after

awhile a person really gets fed up with family not listening and behaving in

a manor that would be supportive.

EXAMPLE: My hubby wanted to take me out to a movie last week with some free

tickets he had picked up. I thought that was great and eagerly accepted the

date. He told me to check the times and movies and let him know what I found.

(He always has me do the work with setting anything up).

Well, I found the movie and time. He agreed. He was busy working outside and

so would need to take a shower before leaving. (We also needed enough time to

go to a restuarant to eat). The movie started at 6pm. At 3:45 pm I asked him

to come in and get ready. I reminded him that we needed time to eat. At 4:45

he comes in. At 5p.m. were walking out the door. We had to pick a restuarant

on the way that served food fast. We couldn't enjoy our meal and we got to

the theatre when it was sstarting. This was on a Saturday night... Very busy.

So had to wait in line. The movie was to last 2 3/4 hrs. Needless to say I

was very stressed and upset that my hubby was being so inconsiderate.

SOOOOOO

Yesterday I finally nailed him with my complaint after 1 weeks time. I wrote

it out and read it so I wouldn't leave anything out and he wouldn't be able

to interupt me.

I told him that I knew he saw me as a whiner and that I got stressed to

easily and that was my problem. But it became his problem when I tried to get

him to come in earlier so that I wouldn't be stressed. I told him I had to

hurry and eat, I couldn't enjoy my food and drink. I had a margarita and

really needed to sit another 15min. or so before walking. But, no time.

Then we get to the theatre. I need his arm but if he doesn't get in line

immediately it will add 10 minutes to get seated. SO he goes to the window

and I walk in by myself. He wanted popcorn, but I knew the movie might

already be started (in other words it could already be dark). Plus I needed

the bathroom. But because I can't walk in the dark I didn't use the bathroom

and I walked the hallway by myself to get into the theatre. The lights went

off just as I sat down.

I told him that he might not think about the dark or the need of the restroom

since he can RUN and probably get back before the previews were over. But, I

couldn't.

Needless to say I was bawling because I couldn't and can't understand how he

can't be considerate. We've been married for 18 years.

I should say good-bye, Jeanie

***********

In a message dated 7/16/00 11:15:48 PM Pacific Daylight Time,

UniqueCMT@... writes:

<< It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. >>

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Kathleen, thank-you for your understanding.

My husband sees me as a whiner. In his eyes I guess I would be. But after

awhile a person really gets fed up with family not listening and behaving in

a manor that would be supportive.

EXAMPLE: My hubby wanted to take me out to a movie last week with some free

tickets he had picked up. I thought that was great and eagerly accepted the

date. He told me to check the times and movies and let him know what I found.

(He always has me do the work with setting anything up).

Well, I found the movie and time. He agreed. He was busy working outside and

so would need to take a shower before leaving. (We also needed enough time to

go to a restuarant to eat). The movie started at 6pm. At 3:45 pm I asked him

to come in and get ready. I reminded him that we needed time to eat. At 4:45

he comes in. At 5p.m. were walking out the door. We had to pick a restuarant

on the way that served food fast. We couldn't enjoy our meal and we got to

the theatre when it was sstarting. This was on a Saturday night... Very busy.

So had to wait in line. The movie was to last 2 3/4 hrs. Needless to say I

was very stressed and upset that my hubby was being so inconsiderate.

SOOOOOO

Yesterday I finally nailed him with my complaint after 1 weeks time. I wrote

it out and read it so I wouldn't leave anything out and he wouldn't be able

to interupt me.

I told him that I knew he saw me as a whiner and that I got stressed to

easily and that was my problem. But it became his problem when I tried to get

him to come in earlier so that I wouldn't be stressed. I told him I had to

hurry and eat, I couldn't enjoy my food and drink. I had a margarita and

really needed to sit another 15min. or so before walking. But, no time.

Then we get to the theatre. I need his arm but if he doesn't get in line

immediately it will add 10 minutes to get seated. SO he goes to the window

and I walk in by myself. He wanted popcorn, but I knew the movie might

already be started (in other words it could already be dark). Plus I needed

the bathroom. But because I can't walk in the dark I didn't use the bathroom

and I walked the hallway by myself to get into the theatre. The lights went

off just as I sat down.

I told him that he might not think about the dark or the need of the restroom

since he can RUN and probably get back before the previews were over. But, I

couldn't.

Needless to say I was bawling because I couldn't and can't understand how he

can't be considerate. We've been married for 18 years.

I should say good-bye, Jeanie

***********

In a message dated 7/16/00 11:15:48 PM Pacific Daylight Time,

UniqueCMT@... writes:

<< It was always so easy for my brother, sister and mother to make me the

outsider, the " crazy " one. >>

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In a message dated 7/17/2000 1:56:48 PM Pacific Daylight Time,

Moonglow21@... writes:

<< Needless to say I was bawling because I couldn't and can't understand how

he

can't be considerate. We've been married for 18 years.

I should say good-bye, Jeanie >>

Jeanie, My Dh does the same stuff. Like taking forever to get us somewhere

becasue he is working on a project he won't stop. You said your husband was

busy working outside. I hope doing yard work? I give in lots and just be late

if I think the project he is doing will benefit me , LOL ..... I stayed home

all weekend while he played in the yard with his lawn mower... It was worth

it to get his butt working. This would be a problem I think CMT or not.

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Hi Jeanie,

I just don't understand how your husband can treat you so shabbily...I hope

he sees the light one day and treats you with a lot more respect. I've never

been married, but my younger sister treats me in the same way as your

husband. I'll never forget the time she left me in her car in the parking

lot, while she went in to a restaurant with her daughter and stepdaughter to

have dinner. She didn't want to take the wheelchair out of the car...she

felt I was too much of a burden, so she left me crying in the car without any

way of getting to the restaurant. I didn't speak to her for months

afterwards, and that was only one of many times she didn't want to bother

with me. We are estranged now, and my disability is a big part of it. I

hope it helps you a bit to know that in many ways, I deal with the same kind

of ignorance that you do. But I feel that we are stronger because we can

rise above people who can't or just won't deal with our CMT. Know that you

always have friends who understand...hope you are feeling better about things.

Kathleen in Brooklyn

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What a terrible thing to have done to you. However, remember we choose our

friends but we inherit our families just like we've inherited CMT and I for one

know that I' ve chosen wisely this time. So to all my friends out there, a big

hug, lots of love and have a wonderful day.

Love

Sue XXXX

Re: closer with family?

Hi Jeanie,

I just don't understand how your husband can treat you so shabbily...I hope

he sees the light one day and treats you with a lot more respect. I've never

been married, but my younger sister treats me in the same way as your

husband. I'll never forget the time she left me in her car in the parking

lot, while she went in to a restaurant with her daughter and stepdaughter to

have dinner. She didn't want to take the wheelchair out of the car...she

felt I was too much of a burden, so she left me crying in the car without any

way of getting to the restaurant. I didn't speak to her for months

afterwards, and that was only one of many times she didn't want to bother

with me. We are estranged now, and my disability is a big part of it. I

hope it helps you a bit to know that in many ways, I deal with the same kind

of ignorance that you do. But I feel that we are stronger because we can

rise above people who can't or just won't deal with our CMT. Know that you

always have friends who understand...hope you are feeling better about things.

Kathleen in Brooklyn

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

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What a terrible thing to have done to you. However, remember we choose our

friends but we inherit our families just like we've inherited CMT and I for one

know that I' ve chosen wisely this time. So to all my friends out there, a big

hug, lots of love and have a wonderful day.

Love

Sue XXXX

Re: closer with family?

Hi Jeanie,

I just don't understand how your husband can treat you so shabbily...I hope

he sees the light one day and treats you with a lot more respect. I've never

been married, but my younger sister treats me in the same way as your

husband. I'll never forget the time she left me in her car in the parking

lot, while she went in to a restaurant with her daughter and stepdaughter to

have dinner. She didn't want to take the wheelchair out of the car...she

felt I was too much of a burden, so she left me crying in the car without any

way of getting to the restaurant. I didn't speak to her for months

afterwards, and that was only one of many times she didn't want to bother

with me. We are estranged now, and my disability is a big part of it. I

hope it helps you a bit to know that in many ways, I deal with the same kind

of ignorance that you do. But I feel that we are stronger because we can

rise above people who can't or just won't deal with our CMT. Know that you

always have friends who understand...hope you are feeling better about things.

Kathleen in Brooklyn

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

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Guest guest

What a terrible thing to have done to you. However, remember we choose our

friends but we inherit our families just like we've inherited CMT and I for one

know that I' ve chosen wisely this time. So to all my friends out there, a big

hug, lots of love and have a wonderful day.

Love

Sue XXXX

Re: closer with family?

Hi Jeanie,

I just don't understand how your husband can treat you so shabbily...I hope

he sees the light one day and treats you with a lot more respect. I've never

been married, but my younger sister treats me in the same way as your

husband. I'll never forget the time she left me in her car in the parking

lot, while she went in to a restaurant with her daughter and stepdaughter to

have dinner. She didn't want to take the wheelchair out of the car...she

felt I was too much of a burden, so she left me crying in the car without any

way of getting to the restaurant. I didn't speak to her for months

afterwards, and that was only one of many times she didn't want to bother

with me. We are estranged now, and my disability is a big part of it. I

hope it helps you a bit to know that in many ways, I deal with the same kind

of ignorance that you do. But I feel that we are stronger because we can

rise above people who can't or just won't deal with our CMT. Know that you

always have friends who understand...hope you are feeling better about things.

Kathleen in Brooklyn

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

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Hi Kathleen,

I'm sorry to hear your sister is such an idiot and insensitive

person. I can't believe that she would do such a thing to a handicap person.

You are better off without her. If you want I'm sure the CMT gang here will

be delighted to get together and come to Brooklyn, and drop foot her butt

into next week LOL. Don't get down over the way she treats you, one day

everybody gets paid back, it's just a matter of time. I wish you the best.

In Love & Light,

Al Hasim

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In a message dated 7/17/00 4:52:51 PM Pacific Daylight Time, jacee17@...

writes:

<< You said your husband was

busy working outside. I hope doing yard work? >>

************

Yes, he was working in the yard, doing landscaping. It really looks nice too.

Jeanie (P.S. I made sure and praised the work he had done, I do appreciate

him doing it... It used to be something that I took care of. Jeanie

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In a message dated 7/17/00 4:52:51 PM Pacific Daylight Time, jacee17@...

writes:

<< You said your husband was

busy working outside. I hope doing yard work? >>

************

Yes, he was working in the yard, doing landscaping. It really looks nice too.

Jeanie (P.S. I made sure and praised the work he had done, I do appreciate

him doing it... It used to be something that I took care of. Jeanie

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In a message dated 7/17/00 4:52:51 PM Pacific Daylight Time, jacee17@...

writes:

<< You said your husband was

busy working outside. I hope doing yard work? >>

************

Yes, he was working in the yard, doing landscaping. It really looks nice too.

Jeanie (P.S. I made sure and praised the work he had done, I do appreciate

him doing it... It used to be something that I took care of. Jeanie

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