Social Isolation

[Guest guest]

In a message dated 10/29/2002 5:51:28 PM Central Standard Time,

dbonorato4@... writes:

> That's why I can't wait for DS conventions and get togethers because I have

> people who actually understand my life. Anyone else find this? I don't

> live in a big city.

> Elaine

HI Elaine

I don't have the problem of a social life, I just want more quiet life lol I

am bad, I didn't see any of my friends over the summer. One lives less than a

block away. I did decide to get out more this fall and winter and leave this

shell lol attend more ds meetings, go to the Special Mom luncheons

etc......... I really thought when Sara got older Id have more time to myself

NOT Im so busy staying a jump ahead of the school, fighting my stress level

and working with Sara. I do see my sisters when they come into town and I

spend a lot of time with my adult daughter. Even if its crashing on my bed

watching the LifeTime channel for women lol

Just in my 5 block radius we have 5 families who have children with ds and 2

other families have children with different dx's. Parents move to my

neighborhood to attend our schools ............... why I have no idea lol I

guess they are better than in the city

Kathy mom to Sara 10 .............who feels too crowded sometimes

[Guest guest]

We also live in a small town, only 2 other parents of kids with DS, one boy

is 4 and the other boy is 10 months. So we identify, but since our kids are

so far apart in age, it still is difficult to find a lot of common ground.

I recently met a Mom and her daughter in the town to the south of us, her

daughter is 9, and we have been able to find some common ground. We have

lived in this area a little over a year, and really just getting to know

people. We still haven't found a church (my fault), and like Elaine, my

hubby isn't exactly a social butterfly. So my goals now are to find a

church, and also try to cultivate more friendships with other women. I have

met a couple of women that have been very accepting and open where is

concerned, encouraging friendship between their daughters and . And

while they have been very willing to listen to things, it still just isn't

the same as talking to someone that has " been there, done that " .

Sharon

Mom to (11,DS) and (7)

Pawleys Island, South Carolina

My favorite quote-

" Do good things, no bad things " . , age 10, reciting her mantra

every day before school.

Social Isolation

I have found that I am as isolated at times as . I don't have that

much of a social life either and those of you who have met me know that this

is VERY hard for me. Sometimes in the past, 's behavior caused us to

have problems. He would hit other people's kids. Now, I think it is partly

because I live so far from work (52 miles) and , (dh) who knows people

here is not very social. That's why I can't wait for DS conventions and get

togethers because I have people who actually understand my life. Anyone

else find this? I don't live in a big city.

Elaine

[Guest guest]

I don't want to make anyone feel jealous but you know, I have been SO LUCKY with

the large number of families located here in our area! Our support group really

did put so many people in touch and many of us working on committees together

really bonded our families together.

We try so hard to make the younger parents see what a blessing our relationships

are but they seem not as interested in forming the same bonds with other

families. They just don't see the need. Our group has special social activities

but one of my favs is Moms' Weekend, where we rent a house at the beach for a

weekend and only moms come together with food, wine and stories! It's the best!

Cheryl in VA

[Guest guest]

Sounds like fun... Wish we had something like that here....... Most of the mom's

here don't get nearly as involved with stuff as I would like. It's basically a

phone call here or there to see how everyone is doing. Not even the support

group is big. I wish it was. I am a young mom IMO, and would like to see more

involvement and more friendships. I don't get out much but I would if I had

other moms to relate to and even just to build great friendships with.

I just got news on Monday that my best friend will be moving across the country

in May or June. I will be very lost without her.

Judi

Re: Social Isolation

I don't want to make anyone feel jealous but you know, I have been SO LUCKY

with the large number of families located here in our area! Our support group

really did put so many people in touch and many of us working on committees

together really bonded our families together.

We try so hard to make the younger parents see what a blessing our

relationships are but they seem not as interested in forming the same bonds with

other families. They just don't see the need. Our group has special social

activities but one of my favs is Moms' Weekend, where we rent a house at the

beach for a weekend and only moms come together with food, wine and stories!

It's the best!

Cheryl in VA

[Guest guest]

I do not feel socially isolated as such, I have a number of good friends to

whom tim is just one of my kids. But I do find that some of the particular

problems that tim throws up I simply cannot talk to my friends about. When

he had problems with school i could talk about that even tho it is

specialised, but the most recent one (to use an example) is that tim soils

himself. My friends know this, they know he has hirshprungs desease and

that that is why he soils and its not becoz of the ds. But beyond knowing

he does it the chat goes no furhter, who wants to discuss how many pairs of

dirty pants he goes thro, how soul destroying it can be to face this on a

daily basis knowing that it might never improve, to be truthful even my

friends locally with kids with ds don't get to hear this bit, their kids are

continent. So I have finally got in specialist help and it was great to be

able to talk to someone witout feeling like I am a failure for having a kid

that still poohs his pants, or for having a kid who 'mines' at night even

thro a nappy. And finally I have been given hope of control of the problem,

tho not a cure, with out the control there is still soiling. So tonight he

had the first of what will be come daily or every second day suppositories

to stop the problem. I have digressed somewhat but I am so relieved to have

been able to get it sorted!

sue wong

[Guest guest]

Wow, did you say 26 babies with DS??? I dont know of any!!! We live in a town

of about 70,000 and there is no support group for DS. I have only met one

other family and their child is older. My friends of course have typical

children and don't understand the DS stuff at all. Talk about isolation!! I

am so jealous!!!

Janis, mom of 3 including Cariana, 14 mos DS

[Guest guest]

Well here in the big city, one can always feel isolated somehow. Of course

there are lots of people with DS, but finding them, or arranging to meet with

them is another story.

Our lives are very busy. has no friends with DS - shes got some

special needs friends and some typical, but none with DS - except the ones

she's met from this group She was and still is the only person with DS

in her classes at school. There were other kids with DS at her school, but

they were in self contained classes.

Our DS support group is good, but many of the people in that group are older

than amanda and the parents are older too and their children are in a

different place socially than amanda. Although she does perform with this

group of young adults in a theater group.

So am I isolated here in the big apple, I would say yes, very isolated. I go

to a support group for moms with kids of disabilities and project hope (the

DS one) and I'm very involved in their school - but the people who understand

parenting a child with DS are you guys - that's why I so love hooking up at

the Buddy walk, in WV and also for our winter getaway in Lancaster. I may

even make it to the southern one next year.

Social isolation in the big city - now theres some food for thought - Elaine

want to field that one???? LOL

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

[Guest guest]

I am in Santa Fe, New Mexico.

Janis

[Guest guest]

Hi There, The lack of people to talk to over the past 2 months has also driven me crazy!@! I looked forward to going to physical therapy just to be around people, but she's discharged me. My husband has been very good about driving me to appointments during the 6 weeks that I wasn't allowed to drive, but he hates to take me shopping, and doesn't like "chitchat." Thankdfully, I can now drive myself, and I go out to find people to converse with, but it's sometimes very difficult. I'd forgotten that aspect of membership in this club. I belonged in May through Sept 2004, before and after the surgery on my right hip (my left hip was done 2/2/06), but dropped out when I got very busy again. Now that I need the social interaction again, I rejoined. What has the speriences been of other people recovering from joint surgery? I'd love to hear from you all. Charlotte in

CTCrazy Contessa <momcats55@...> wrote: Dear Sheila, I know so well what your fears re; the social isolation are. I drove my in home nurse and Pt crazy with my chatter because they were the only people I saw for a couple of weeks. Thank God for this website and the people on it as they became my social life for awhile. We are here for you and if you get to feeling cabin fever e-mail me anytime . I love to talk. I may take a couple of days to reply but reply I will as I can so easily remember what a lifeling my e-pals were for me. Hang in ther this too shall pass!!!!!! Warm thoughts and gentle hugs Contessa -- Re: Both hips at once - Recovery Planning Thank you for your advice. My surgeon said it will be a large head and I won't have to worry about dislocation. I have no idea how I am supposed to walk after the operation, but I suppose

the PT does. Right now, I'm starting to make enquiries about meal preparation services and home cleaning. No stairs - I'm in a condo. I'm a bit concerned about the social isolation until I can get back to work. Sheila

[Guest guest]

Sadly sometimes you loose some friends who you thought were friends. I have learned to speak cat. Salemcharlotte clark <charlottie3@...> wrote: Hi There, The lack of people to talk to over the past 2 months has also driven me crazy!@! I looked forward to going to physical therapy just to be around people, but she's discharged me. My husband has been very good about driving me to appointments during the 6 weeks that I wasn't allowed to drive, but he hates to take me shopping, and doesn't like "chitchat." Thankdfully, I can now drive myself, and I go out

to find people to converse with, but it's sometimes very difficult. I'd forgotten that aspect of membership in this club. I belonged in May through Sept 2004, before and after the surgery on my right hip (my left hip was done 2/2/06), but dropped out when I got very busy again. Now that I need the social interaction again, I rejoined. What has the speriences been of other people recovering from joint surgery? I'd love to hear from you all. Charlotte in CTCrazy Contessa <momcats55@...> wrote: Dear Sheila,

I know so well what your fears re; the social isolation are. I drove my in home nurse and Pt crazy with my chatter because they were the only people I saw for a couple of weeks. Thank God for this website and the people on it as they became my social life for awhile. We are here for you and if you get to feeling cabin fever e-mail me anytime . I love to talk. I may take a couple of days to reply but reply I will as I can so easily remember what a lifeling my e-pals were for me. Hang in ther this too shall pass!!!!!! Warm thoughts and gentle hugs Contessa -- Re: Both hips at once - Recovery Planning Thank you for your advice. My surgeon said it will be a large head and I won't have to worry about dislocation. I have no idea how I am supposed to walk after the operation, but I suppose the PT does. Right now, I'm starting to make enquiries about meal preparation services and home cleaning. No stairs - I'm in a condo. I'm a bit concerned about the social isolation until I can get back to work. Sheila Be

your own advocate! The best patient is an informed patient!

[Guest guest]

I know that feeling of boredom and isolation even when

recovered enough to get out and drive. Most old

friends just aren't in the same place with me even

though they mean well (well, some of them)_ ONe of

the things I found is to hang out at Mc s when

fellow loafers are there. There is also a donut shop

in the neighborhood when seems like a God send.

Certain people are there every time of the day. I

usually take something to do if no one is available

for loafing talk. I always have a little paper work

or light reading to fill in gaps between loaf talk. I

thing it is fun to observe the little kids that stream

through Mcs. I also makes me feel thankful I

have graduated from young motherhood. Enjoy RUTH

--- Salem Saglime <salem3p@...> wrote:

> Sadly sometimes you loose some friends who you

> thought were friends. I have learned to speak cat.

> Salem

>

> charlotte clark <charlottie3@...> wrote: Hi

> There, The lack of people to talk to over the past 2

> months has also driven me crazy!@! I looked forward

> to going to physical therapy just to be around

> people, but she's discharged me. My husband has

> been very good about driving me to appointments

> during the 6 weeks that I wasn't allowed to drive,

> but he hates to take me shopping, and doesn't like

> " chitchat. " Thankdfully, I can now drive myself,

> and I go out to find people to converse with, but

> it's sometimes very difficult. I'd forgotten that

> aspect of membership in this club. I belonged in

> May through Sept 2004, before and after the surgery

> on my right hip (my left hip was done 2/2/06), but

> dropped out when I got very busy again. Now that I

> need the social interaction again, I rejoined.

> What has the speriences been of other people

> recovering from joint surgery? I'd love to hear

> from you all. Charlotte in CT

>

> Crazy Contessa <momcats55@...> wrote:

> Dear Sheila,

> I know so well what your fears re; the social

> isolation are. I drove my in home nurse and Pt crazy

> with my chatter because they were the only people I

> saw for a couple of weeks. Thank God for this

> website and the people on it as they became my

> social life for awhile. We are here for you and if

> you get to feeling cabin fever e-mail me anytime . I

> love to talk. I may take a couple of days to reply

> but reply I will as I can so easily remember what a

> lifeling my e-pals were for me. Hang in ther this

> too shall pass!!!!!!

> Warm thoughts and gentle hugs

> Contessa

>

> -- Re: Both hips

> at once - Recovery Planning

>

>

> Thank you for your advice. My surgeon said it will

> be a large head and

> I won't have to worry about dislocation.

>

> I have no idea how I am supposed to walk after the

> operation, but I

> suppose the PT does. Right now, I'm starting to

> make enquiries about

> meal preparation services and home cleaning. No

> stairs - I'm in a

> condo.

>

> I'm a bit concerned about the social isolation

> until I can get back to

> work.

>

> Sheila

>

>

>

>

>

>

>

[Guest guest]

>

> I know that feeling of boredom and isolation even when

> recovered enough to get out and drive. Most old

> friends just aren't in the same place with me even

> though they mean well (well, some of them)_

I'm looking forward to the day when I can drive again! My doctor

tells me as a general rule it will be 8 weeks, although if I do well

in therapy who knows. I understand though that I need to have my

reflexes sharp though, especially of I have to drive since I commute

down to L.A. traffic each day.

As fas as frineds go, I'm only 4 weeks post op....in the beginning my

friends were calling me everyday. Especially the five days when I

was in the hospital. They actually drove me nuts. For the first 2

days in there, I turned the phone off. Now I get a call from my co-

workers maybe 2 times a week. I know people mean well, but they have

their own lives too. So when my husband gets home, I yak his ear

off.....poor thing!!

Thank goodness I have you all!!!

Deb

[Guest guest]

My husband lucked out he never went through it. He was up and around so quick. Also he came home to a full house. Me, the dogs, his parents, our niece and nephew. There is always someone around.

I do feel sorry for those of you that don't have 5 other people living with you. Five extra people get on your nerves after awhile but you never have time alone to get lonely.

When we work on the road I get it. He is go away for five+ days at a time. Leaving me in strange town. I have the dogs and I can go out if I feel like it. I have friends I e-mail, and then I can do housework, and all the stuff you people can't do after surgery.

The other option is to stay with his family, and I have had enough of them as wonderful as they are. They broke the last straw when we stayed with them after his hip. It was nice to get back on the road, away from family. Sorry my day to vent, about something off topic.

So hang in there those of you that are feeling cabin fever. Find a good book, listen to music, take up a new craft, learn to knit (not just you women), Sort out the family photos and put them in albums, write a novel, learn a new langue,

Like someone else said do cross words word, searches, get some on to buy you your favorite series on DVD and watch them,

make a when I am better list. I want to plant some plants in the flower bed, go for a long walk along the river, I want to play catch with the grandkids, or kids, this will give you things to look forward to and remind you that you have things to look forward to that you couldn't do before.

Ask to borrow someone's video game system, and get tetras for it. Once you get going on some video games days just disappear. I am playing one now that sounds really boring but is addicting it is call Me & My Katamari, you roll this sticky ball around and collect up stuff on it. You have a time limit to make it a certain size. My husband leaves for work and before I know it he is home again. Plus it will give you some good time with the person you borrowed it from, they will set it up, they will show you how to play some of the easy games, there are two player games so you can play against them, and if it is your grandkids, or kids, it will give you something to talk about. Did you get past this level, can you show me how to do that.... worth a try, I know my dad and I spent days like that after his car accident, he hadn't played a video game ever before.

Well everyone I have made your eyes sore from reading this so I will let you get on reading some other mail. Have a great long weekend, hope the weather is great where ever you are. I'm thinking of you guys.

From: "reynawhitehawk" <ReynaWhitehawk@...>Reply-Joint Replacement To: Joint Replacement Subject: Re: Social IsolationDate: Wed, 12 Apr 2006 14:41:14 -0000>> I know that feeling of boredom and isolation even when> recovered enough to get out and drive. Most old> friends just aren't in the same place with me even> though they mean well (well, some of them)_I'm looking forward to the day when I can drive again! My doctor tells me as a general rule it will be 8 weeks, although if I do well in therapy who knows. I understand though that I need to have my reflexes sharp though, especially of I have to drive since I commute down to L.A. traffic each day. As fas as frineds go, I'm only 4 weeks post op....in the beginning my friends were calling me everyday. Especially the five days when I was in the hospital. They actually drove me nuts. For the first 2 days in there, I turned the phone off. Now I get a call from my co-workers maybe 2 times a week. I know people mean well, but they have their own lives too. So when my husband gets home, I yak his ear off.....poor thing!!Thank goodness I have you all!!!Deb