to Leonie

[Guest guest]

Leonie hi,

I never write about feelings because I don't think that is what this site is

for but here I go...

I too don't have any friends. I have FMF " for the moment friends " . To me

this means they are my friends when they or I need something. I feel most

people make their friends in school or when they move to a neighborhood.

After that it's very hard to get people to like you enough to be a close

friend because they already have their friends. Also I have found over the

years that people are friends with their families and if they have a large

family you will never get in. As for bubbly.the bubbliest person I ever

worked with had no friends.

When my kids were in school I had lots of FMF and now they are gone. What I

considered my " best friend " found another friend that she had more in common

with at the time. I was to basically to put up with her treating this other

person like she was great and I was second string. OK .so now without a

friend for 10 years I probably would do it but at that time I said h-l no.

She never called me back.

I used to talk about myself a lot.no that is not the way to make friends. I

listened a lot.no that's not it either. I don't think there is a key to

finding friends. I think when the time is right we will both have friends.

I am lonely.very lonely. But I have my kids and my hubby and at my age I

feel that's what I need. My kids have their own life also but my hubby and I

make it our business to keep in contact and visit. You are still the parent

no matter how old your kids get. Call him. Send cards. Take gifts (even if

it is small) when you visit. Let him know how much he means to you. Maybe he

does not know how much you need him. Don't whine but just tell him outright.

My mother lived a mile away and never visited without an invitation. I would

have loved for her to " drop in " . She nor my dad ever did. When she got sick

and my dad died I hardly knew her and it was difficult to warm up to her.

Remenber boys are different than girls so if you have a daughter in law make

her your friend. Call her and talk about things both of you like or have in

common. It's important to have something in common with people. Join that

group and talk about what you have in common.

I hope we both find friends in the near future. <smile> we are such good

people!

Love and hugs,

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of leonie cent

Sent: Monday, January 21, 2008 5:36 AM

rheumatic

Subject: rheumatic Rhonda and all

Hi Rhonda and all,

It can be hard to build friendships when you are down and out. Do you have

any tips on how to make friends ?

Even from childhood, I've never been the sort of person to connect with

people and form lasting relationships, as much as I yearned for it. I don't

know why - I guess it's because of low self esteem and so people just aren't

drawn to me like they would be with bubbly people who have a healthy self

image. I'm not shy and can chat easily and take an interest in others, but

it doesn't seem to go anywhere. I noticed the most popular people talk about

themselves and their lives an awful lot, which isn't a bad thing because I

don't mind listening - but I am wary of talking about myself too much as I

think it will put people off - esp potential friends... they might think I'm

a pain in the a#% or something.

Not having any friends or family to talk to regularly is a real bummer and

makes life unbearable. I just wanted to get that off my chest, and I don't

expect anyone to have any answers.

Best to all,

Leonie

[Guest guest]

I think it is hard to maintain friendships when you are really sick and

can't get out much. I am unable to drive or walk and am on oxygen. I cannot go

out unless someone takes me and pushes me in my wheelchair.

I use most of my contacts just to get to my many doctor appointments. I live

alone and have found that over the last 15 years that I have been ill, my

friends have just drifted away. It is lonely.

I don't have a husband and my daughter is married and very busy with

starting her own life.

I think making friends is extremely hard when you can't get out. The house

next door to me sold a year ago. I was friendly with the people who lived there

before. He would always shovel my snow, rake my leaves, etc.

I have never even met the new neighbors. I have no way of getting even next

door and don't know their names to call. Over the years so many people have

moved away that I only know one of my neighbors now.

People are so busy it is hard to get to know them, and they don't have the

time for someone who is homebound and so unable to do anything.

It is a real problem when you haven't yet achieved remission or relief from

your symptoms.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi there, (name?)

I'm sorry you are so dependant on people and housebound - of course, I'm not in

such a lonely situation as you. If only you lived nearby, I could visit ... I

found that there are several people I met online who I could be friends with,

but it's ironic that we are scattered all over the earth. The internet can be

good to chat with folks, but it is very frustrating too because nothing is the

same as being in the physical presence of others. With the internet, I could

drop dead tomorrow and not many would notice.

What's your story ? Are you on the AP ? I just had my first visit with an AP

doc yesterday and am starting tests.

Best,

Leonie

Re: rheumatic to Leonie

I think it is hard to maintain friendships when you are really sick and

can't get out much. I am unable to drive or walk and am on oxygen. I cannot go

out unless someone takes me and pushes me in my wheelchair.

I use most of my contacts just to get to my many doctor appointments. I live

alone and have found that over the last 15 years that I have been ill, my

friends have just drifted away. It is lonely.

I don't have a husband and my daughter is married and very busy with

starting her own life.

I think making friends is extremely hard when you can't get out. The house

next door to me sold a year ago. I was friendly with the people who lived

there

before. He would always shovel my snow, rake my leaves, etc.

I have never even met the new neighbors. I have no way of getting even next

door and don't know their names to call. Over the years so many people have

moved away that I only know one of my neighbors now.

People are so busy it is hard to get to know them, and they don't have the

time for someone who is homebound and so unable to do anything.

It is a real problem when you haven't yet achieved remission or relief from

your symptoms.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

To the lonely lady in the wheelchair!

You have a computer. You have reached us. Can you tell stories? Write to

us? Once you are comfortable with that. Start sending anecdotes to your local

newspaper. Can you write a simple poem? Send that. Call the local nursing

home administrator. Ask if they have a program of visitors for shut-ins. Call

up the local Pastor, Priest or Rabbi and let them know of your situation. Maybe

they can send someone with a car to pick you up. Sponsor a ladies afternoon.

Sit down one day with your daughter and let her know how you feel. Do you have

grandchildren? If not, talk about how you would love to have them someday.

Place ads on craigslist. How do you eat? Does meals on wheels come to your

house? Call up the social workers in your area! Call up the library and have

someone come over and bring you books. Perhaps, you'll find someone who will

read to you or find an intergenerational program where you can read to them. You

may be lonely, but if you reach out, someone

will come. Reach out and receive abundantly in return. In this modern day of

electronics and cell phones, DVD's and MP3 players, I'm sure there is a club out

there or a place where you can exchange movies, books and music. Put your mind

to it and you'd be surprised how resourceful you can become. Let us know how

you make out and if you want to add your story, I would be willing to read it.

I may ask you a lot of questions! Dolores~~~~~~

leonie cent <leoniecent@...> wrote:

Hi there, (name?)

I'm sorry you are so dependant on people and housebound - of course, I'm not in

such a lonely situation as you. If only you lived nearby, I could visit ... I

found that there are several people I met online who I could be friends with,

but it's ironic that we are scattered all over the earth. The internet can be

good to chat with folks, but it is very frustrating too because nothing is the

same as being in the physical presence of others. With the internet, I could

drop dead tomorrow and not many would notice.

What's your story ? Are you on the AP ? I just had my first visit with an AP doc

yesterday and am starting tests.

Best,

Leonie

Re: rheumatic to Leonie

I think it is hard to maintain friendships when you are really sick and

can't get out much. I am unable to drive or walk and am on oxygen. I cannot go

out unless someone takes me and pushes me in my wheelchair.

I use most of my contacts just to get to my many doctor appointments. I live

alone and have found that over the last 15 years that I have been ill, my

friends have just drifted away. It is lonely.

I don't have a husband and my daughter is married and very busy with

starting her own life.

I think making friends is extremely hard when you can't get out. The house

next door to me sold a year ago. I was friendly with the people who lived there

before. He would always shovel my snow, rake my leaves, etc.

I have never even met the new neighbors. I have no way of getting even next

door and don't know their names to call. Over the years so many people have

moved away that I only know one of my neighbors now.

People are so busy it is hard to get to know them, and they don't have the

time for someone who is homebound and so unable to do anything.

It is a real problem when you haven't yet achieved remission or relief from

your symptoms.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi Cooky, You always give such good advice, I didn't know you are lonely. I

pictured you a leader of friends. Wow! I'd like to be an E: friend if you

would like. I am Dolores and a typical New Yorker, very outspoken. I have S/D,

R/A & MCTD. I like to write, read, play, go out, music, travel, have many

friends and some relatives. I have a husband and we are involved in everything.

Sometimes, too much! But I have always been like that. Mike and I take care of

people's dogs when they go on vacation and we are Santa & Elf during December.

We serve on the comittee for the Annual Scleroderma Walkathon and are volunteers

for the Scleroderma Foundation. I came down with Scleroderma symptoms in 2004,

but aches and pains had been bothering me for quite some time before that.

Finally was hospitalized in early 2005, they found (PF) Pulmonary Fibrosis but

did not diagnose S/D. Became bedridden for 8 months, went thru many specialists

with each ordering their own set of

tests. About 10 months later, I was told I had S/D and was terminal and didn't

have long because my lungs were deteriorating at a fast pace. Woooooooo! That

was a blow! The next month, I met Lynne on line who told me about A/P. The

following month, I was in Boston sitting in front of Dr. Trentham. He gave me a

script for Minocin and I began my upward healing and have never looked back.

Today, I am robust, ready and always up to doing more of anything, whereever I

am led. Next Tuesday, we are flying to Florida to pick up our R/V and drive it

back. In October, we will be traveling to Arizona and last winter, I toured the

Caribbean for 4 months. I am constantly on the go. I sleep a lot, eat a lot,

and do everything to an extreme. Maybe that is good and maybe not. But, on my

next birthday, I will be 72 and I plan on living out my life to the fullest.

Oh! yes, on Friday, I have another birthday party to attend. We belong to a

music group and often get together to

play music and sing along. My children and grandchild love to bring their

friends to NY because we always end up having a pizza party and a campout on the

living room floor. We blow up the air beds and make popcorn. We used to host

people through Servas and Hospitality.com. But Mike cut that out when I got

sick. Our NY apt just isn't big enough and we need some peace sometimes. The

best part of being international hosts is that in 2002, we got to tour Europe

and were hosted by all of our hosts and made friends with a few new ones. We

have toured Mexico many times and getting ready to go back. One wonderful New

Year's Eve a year before I got sick, we were invited to spend time on a friend's

boat in Cuba. That was one of my best visits. Well, that's part of my life.

I'd like to hear what yours is like.

I guess you know that I am writing a book compiled of stories from us, the

patients. There is no such book out there. I want to spread awareness with

this book. The proceeds of the book after expenses will go to research labs.

I'm in the process of researching the research labs at present as I don't want

one dime to be wasted.

I have received many stories and some will be published. Those who want to

write their story but don't want it published, I promise not to include it in

the book. Some have chosen aliases for personal or private reasons and I have

received many photographs. Many people said they felt that getting their story

down on paper was very cathartic and they felt very good about it. I'm glad it

serves a purpose. I love to write so I know how that feels.

I am a published poet,although not many people have heard of me. If you go to

poetry.com, type in my name in the authors box, you will find my poems. My last

name is Rosner. I have never tackled a book before, so this is quite a challenge

and more work than I expected. But it is coming along. Okay, your

turn!~~~~~Have a Happy, Healthy, Healing New Year!~~~~Dolores & Mike

C Stonkey <cookee1@...> wrote:

Leonie hi,

I never write about feelings because I don't think that is what this site is

for but here I go...

I too don't have any friends. I have FMF " for the moment friends " . To me

this means they are my friends when they or I need something. I feel most

people make their friends in school or when they move to a neighborhood.

After that it's very hard to get people to like you enough to be a close

friend because they already have their friends. Also I have found over the

years that people are friends with their families and if they have a large

family you will never get in. As for bubbly.the bubbliest person I ever

worked with had no friends.

When my kids were in school I had lots of FMF and now they are gone. What I

considered my " best friend " found another friend that she had more in common

with at the time. I was to basically to put up with her treating this other

person like she was great and I was second string. OK .so now without a

friend for 10 years I probably would do it but at that time I said h-l no.

She never called me back.

I used to talk about myself a lot.no that is not the way to make friends. I

listened a lot.no that's not it either. I don't think there is a key to

finding friends. I think when the time is right we will both have friends.

I am lonely.very lonely. But I have my kids and my hubby and at my age I

feel that's what I need. My kids have their own life also but my hubby and I

make it our business to keep in contact and visit. You are still the parent

no matter how old your kids get. Call him. Send cards. Take gifts (even if

it is small) when you visit. Let him know how much he means to you. Maybe he

does not know how much you need him. Don't whine but just tell him outright.

My mother lived a mile away and never visited without an invitation. I would

have loved for her to " drop in " . She nor my dad ever did. When she got sick

and my dad died I hardly knew her and it was difficult to warm up to her.

Remenber boys are different than girls so if you have a daughter in law make

her your friend. Call her and talk about things both of you like or have in

common. It's important to have something in common with people. Join that

group and talk about what you have in common.

I hope we both find friends in the near future. <smile> we are such good

people!

Love and hugs,

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of leonie cent

Sent: Monday, January 21, 2008 5:36 AM

rheumatic

Subject: rheumatic Rhonda and all

Hi Rhonda and all,

It can be hard to build friendships when you are down and out. Do you have

any tips on how to make friends ?

Even from childhood, I've never been the sort of person to connect with

people and form lasting relationships, as much as I yearned for it. I don't

know why - I guess it's because of low self esteem and so people just aren't

drawn to me like they would be with bubbly people who have a healthy self

image. I'm not shy and can chat easily and take an interest in others, but

it doesn't seem to go anywhere. I noticed the most popular people talk about

themselves and their lives an awful lot, which isn't a bad thing because I

don't mind listening - but I am wary of talking about myself too much as I

think it will put people off - esp potential friends... they might think I'm

a pain in the a#% or something.

Not having any friends or family to talk to regularly is a real bummer and

makes life unbearable. I just wanted to get that off my chest, and I don't

expect anyone to have any answers.

Best to all,

Leonie

[Guest guest]

Hi Dolores,

I will email you privately but let you know I have not overlooked your note

and would like an email pal. I guess I am not as lonely as others when it

comes right down to it. I have a husband and children and grandbabies. What

I don't have are close friends. That's what makes me lonely. I miss going to

the mall with a friend. When I wear something there is no one here to ask

how I look (hubby says " how do you think you look? " ). My kids are out of

state. So they do not drop by or come to dinner on Sunday. We are going to

Ohio this weekend to see my Madison and I am going to love it!

I miss going to lunch with a friend after shopping. When I worked we went

out to lunch all the time. These people still work or live far away. So I

feel alone and lonely

BUT I have my computer and QVC!!! So I have things to do but no one to do

them with!

Thanks for responding and saying nice things.

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of mike rosner

Sent: Tuesday, January 22, 2008 2:46 AM

rheumatic

Subject: Re: rheumatic to Leonie

Hi Cooky, You always give such good advice, I didn't know you are lonely. I

pictured you a leader of friends. Wow! I'd like to be an E: friend if you

would like. I am Dolores and a typical New Yorker, very outspoken. I have

S/D, R/A & MCTD. I like to write, read, play, go out, music, travel, have

many friends and some relatives. I have a husband and we are involved in

everything. Sometimes, too much! But I have always been like that. Mike and

I take care of people's dogs when they go on vacation and we are Santa & Elf

during December. We serve on the comittee for the Annual Scleroderma

Walkathon and are volunteers for the Scleroderma Foundation. I came down

with Scleroderma symptoms in 2004, but aches and pains had been bothering me

for quite some time before that. Finally was hospitalized in early 2005,

they found (PF) Pulmonary Fibrosis but did not diagnose S/D. Became

bedridden for 8 months, went thru many specialists with each ordering their

own set of

tests. About 10 months later, I was told I had S/D and was terminal and

didn't have long because my lungs were deteriorating at a fast pace.

Woooooooo! That was a blow! The next month, I met Lynne on line who told me

about A/P. The following month, I was in Boston sitting in front of Dr.

Trentham. He gave me a script for Minocin and I began my upward healing and

have never looked back. Today, I am robust, ready and always up to doing

more of anything, whereever I am led. Next Tuesday, we are flying to Florida

to pick up our R/V and drive it back. In October, we will be traveling to

Arizona and last winter, I toured the Caribbean for 4 months. I am

constantly on the go. I sleep a lot, eat a lot, _

[Guest guest]

Hi Cooky! I understand the kind of loneliness you mean! Mike and I live in NYC

and we do have friends we get together with. It used to be more often before I

got sick. We get together with friends mostly to celebrate birthdays. We are

doing this tomorrow night. The last time we got together was in early December.

Mike and I are going down to Florida on Tuesday. We have several friends down

there and a Mom. We also have an R/V stored there. One of our friends is going

to help us drive the R/V back to NY. My daughter lives in St. Croix where she

is a nursing student. My son lives in Hawaii. He has brain-damage from a car

accident he sustained when he was very young. But he is able to function fairly

well. He was married for a while to another brain - injured lady. They had two

children, but have gone their separate ways and I haven't seen the girls in

years. My grandson lives in Arizona and will be married in 2009. He has just

been discharged from the Navy. So,

my kids and mother are not here either. It's just Mike and I. We've been

married for 32 yrs. Both of us have an immune disease history. So, we take

care of each other. We are always quite busy and our days just fly by. I am

involved in many projects. Most of them are connected with S/D causes such as

the annual walkathon and attending support groups, etc. Mike and I go

everywhere together. I live in a 10 story building with 150 apartments. So,

just getting down to the lobby, I have a dozen or more hello's in the building.

We also belong to a music group and get together to jam and have singalongs and

sometimes play cards or board games. We have a couple who live in Queens.That is

one of the NYC boroughs and they come into the city at least twice a month and

we either go out to dinner, or have something delivered or they bring something

and we add something to the table and combine our meals. We are fortunate to

have many little take-out restaurants that deliver

and a meal only a phone-call awat. Mike and I take turns cooking our favorite

dishes. And sometimes we eat out. Urban living is quite different from living

in the burbs. With all this activity, Mike and I are thinking of moving to a

warmer climate. We tried going to Fl. That's why we bought the RV. But Mike

hates Fl. We went to the Caribbean last winter and stayed 4 months. Mike and I

didn't like the confinement of a small Island where you need either a boat or a

small plane. So, that was out. Next year, we are going to try Arizona. We can

attend my grandson's wedding and have a look to see if that would be to our

liking. So, we are in the crossroads. This weather is very cold and a warm

desert climate witha retreat path to Mexico would be a treat. We lived in

Arizona for several years when my grandson was a baby. We have no other family.

Mike's parents have passed and he was an only child as was I, so we have no

siblings. My Dad had two children by his second

wife, but my Dad passed many years ago and I have no idea where they are. I

was born in NYC and don't have a single relative here. Mike was born in Los

Angeles and does not have a single relative there. So, we are pretty much free

to wander and roam, visit or remain at home. We have many hobbies. I paint,

write, read, and am very creative. My husband likes to collect things, like

sports cards, unusual watches and goes to card and antique shows twice a month.

Then he and other collectors get together and trade from their collections. I

can't say we are lonely. There is not enough time in one day to do it all. And

this computer is very time consuming also. I have certain shows that we watch

regularly on T.V. So, our days fly by. I am presently compliling a book of

stories from people with TH 1 disease which includes S/D, R/A, some Lupus and a

few other diseases as well. There are different types of S/D so, to cover all

of them would be a book in itself. I've been

on A/P Minocin for two years and now in my third month of M/P. I doing very

well and preparing to go into the second phase. So, my life is quite full. I

like reading the posts and don't always respond unless there is a topic that is

controversay, then I am in the midst of that. I like to create a string where

people have different points of view and share different thoughts. That's how we

learn and I have always enjoyed reading yours. You seem to have it all together

and are very knowledgable. You are a born teacher who is willing to help newbies

accept and adjust their lives. I have admired your wisdom from afar. So, when

you said you were lonely, it surprised me. But, I understand. You are

girlfriend lonely and that's a different kind of lonely. I don't have that as

Mike is my husband first, best friend second and we do everything together.

Illness has brought us very close. When Mike was 44, he suffered several

strokes, a foot amputation, torn pancreas and I

could go on, but you get the picture. I was a nurse, quit my job to take care

of him. It took many years, but he is back on his feet and now takes care of me

when I need help. He was very busy with health issues when I was first

diagnosed. S/D hit me pretty hard and we had much to over come. I was bedridden

for more than 8 months before I found out about micoplasmas and Minocin. That

turned the tide. So, we have almost lost each other and that brought us very

close. My gal pals are all still working and since both Mike and I are retired,

we have become each others pal. That's my story in a very large nutshell. I

won't be on the computer for about 2 weeks and will resume when I get back. I

have 4 days to pack and get ready. Till later, Take care~~~~Dolores & Mike

C Stonkey <cookee1@...> wrote:

Hi Dolores,

I will email you privately but let you know I have not overlooked your note

and would like an email pal. I guess I am not as lonely as others when it

comes right down to it. I have a husband and children and grandbabies. What

I don't have are close friends. That's what makes me lonely. I miss going to

the mall with a friend. When I wear something there is no one here to ask

how I look (hubby says " how do you think you look? " ). My kids are out of

state. So they do not drop by or come to dinner on Sunday. We are going to

Ohio this weekend to see my Madison and I am going to love it!

I miss going to lunch with a friend after shopping. When I worked we went

out to lunch all the time. These people still work or live far away. So I

feel alone and lonely

BUT I have my computer and QVC!!! So I have things to do but no one to do

them with!

Thanks for responding and saying nice things.

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of mike rosner

Sent: Tuesday, January 22, 2008 2:46 AM

rheumatic

Subject: Re: rheumatic to Leonie

Hi Cooky, You always give such good advice, I didn't know you are lonely. I

pictured you a leader of friends. Wow! I'd like to be an E: friend if you

would like. I am Dolores and a typical New Yorker, very outspoken. I have

S/D, R/A & MCTD. I like to write, read, play, go out, music, travel, have

many friends and some relatives. I have a husband and we are involved in

everything. Sometimes, too much! But I have always been like that. Mike and

I take care of people's dogs when they go on vacation and we are Santa & Elf

during December. We serve on the comittee for the Annual Scleroderma

Walkathon and are volunteers for the Scleroderma Foundation. I came down

with Scleroderma symptoms in 2004, but aches and pains had been bothering me

for quite some time before that. Finally was hospitalized in early 2005,

they found (PF) Pulmonary Fibrosis but did not diagnose S/D. Became

bedridden for 8 months, went thru many specialists with each ordering their

own set of

tests. About 10 months later, I was told I had S/D and was terminal and

didn't have long because my lungs were deteriorating at a fast pace.

Woooooooo! That was a blow! The next month, I met Lynne on line who told me

about A/P. The following month, I was in Boston sitting in front of Dr.

Trentham. He gave me a script for Minocin and I began my upward healing and

have never looked back. Today, I am robust, ready and always up to doing

more of anything, whereever I am led. Next Tuesday, we are flying to Florida

to pick up our R/V and drive it back. In October, we will be traveling to

Arizona and last winter, I toured the Caribbean for 4 months. I am

constantly on the go. I sleep a lot, eat a lot, _