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Hey everyone

Im sure that everyone may be able to relate to this in some way. I know we all

have different illnesses and different lives etc. Right now whats driving me to

my bottle of Klonopin is hearing about what other people my age are doing in

their lives that I cant do now. Im 31 (sjogrens, suspected SLE) and my mom

calls with all the reports on who's getting married whos having a baby and the

showers and parties etc. None of these things are options for me now with

symtoms out of control and about 20 drugs in my system My life on disability is

nothing like my old friends and Im scraping to get by when I used to have a hot

job with lots of $. Just wanted to see how others out there deal with these

feelings because I know turning to different pills all the time is not the

answer, but its all I have to calm down. I know other peoples lives around here

have gone on as usual, and I have to do everything I can to NOT CRY since it

causes my eyes to flare for days at a time.

Welcome to the new people on the list and I hope everyone out there is feeling

as good as possible.

:-) Colleen

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Hi

Thank you for your nice response. 22 is so young to have all the health issues

also. I feel for you with school I finished almost all my masters in business

when this sjogrens really hit my eyes and I had to drop and take a break. I

know that in time you will finish and reach your goals! School is hard when

your healthy, let alone when you are sick and dealing with so much. I also know

what you mean about the family, My mom and dad always think Im exagerating and

my sister has just blown me off to go on and party etc. I wish I were

exagerating and that this was not the truth and Im sure you do too! Thanks for

the tips, and having my own apt again has really helped me , i do whatever I

want with no opinions of others.

Take care

Hugs Colleen

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Hello Colleen

It's hard to compare our lives in the shadow of illness versus what we thought

our lives would be. Certainly, I'm trying to come to grips with that ever

since I was diagnosed back in April after my 36th birthday with CHF. That's

why I asked my Doctor to put me on anti-depressants and to refer me to a

Psychologist. He was thrilled to do so saying that usually they had to twist

peoples arms to do that. The way I see it, this is something I had never

expected to deal with and am unprepared to deal with, there's nothing wrong in

asking for help with dealing with these issues.

Currently, my therapist wants me to explore the arbitrary limits I've placed on

my behaviour throughout my life and determine if they were ever really fair. I

guess it's a way of seeing that this too is another restriction we place on our

lives and that in reality we need to be able to allow ourselves to live our

lives. It's probably a matter of sorting out what we owe to ourselves and what

we feel we owe to others and to society. I guess she's figuring on digging

inhibitions up one by one and reprioritizing them.

I also found that I spent a period of time feeling sorry for myself and perhaps

still do (though mostly it's a matter of feeling it in the pocket book after

being somewhat non-chalant for a few weeks). I think it is necessary to have a

good cry and try to get that out of your system.

Regards,

ccomm777@... wrote:

> Hey everyone

> Im sure that everyone may be able to relate to this in some way. I know we

all have different illnesses and different lives etc. Right now whats driving

me to my bottle of Klonopin is hearing about what other people my age are doing

in their lives that I cant do now. Im 31 (sjogrens, suspected SLE) and my mom

calls with all the reports on who's getting married whos having a baby and the

showers and parties etc. None of these things are options for me now with

symtoms out of control and about 20 drugs in my system My life on disability is

nothing like my old friends and Im scraping to get by when I used to have a hot

job with lots of $. Just wanted to see how others out there deal with these

feelings because I know turning to different pills all the time is not the

answer, but its all I have to calm down. I know other peoples lives around here

have gone on as usual, and I have to do everything I can to NOT CRY since it

causes my eyes to flare for days at a time.

> Welcome to the new people on the list and I hope everyone out there is feeling

as good as possible.

> :-) Colleen

>

> ...

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Hi Helen

Thanks for sharing your story about the valium, I cant get my hands on that much

or id probably be doing that too, Im glad you found other ways to deal with

things, I know with more time this will get better. Ive only been on disability

for a short time and Im not used to it yet.

My sjogrens is the major problem. My eyes have NO TEARS at all, I have 4 plugs

in and have to use drops and ointments constantly I am so sensitive to light

that I have to wear tinted glasses all the time now, so I pray that one of the

new eye drops being worked on for this WORKS because it is really hell, My

eyes burn around the clock. Hows your lupus? Do you have a lot of syptoms from

it>?

take care and hugs Colleen

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Colleen-how well I do understand what you are saying here for i have gone

through the same feelings many times and once in awhile still do. I have

no voice due to throat cancer etc and it totally changed my life form

being a complete extrovert to one that stays home most of the time

because folks cannot hear me. It is not that they do not want me with

them-it is me because of the frustration of not being able to talk and be

understood. I used to sing in a travelling gospel group and was a

licensed addictions counsellor when this happened and for so long after

words I fell into the worst depression. Then somehow one day I had an

awakening and realized that I was going to be here for awhile as this is

permanent so I had better find a way to change my attitude or I would not

make it. I had to deal with the grief and anger of the loss first(and

still do this at times) and then look at other options of how I could

make my life acceptable and meaningful to me. I could n longer sing with

a voice, but i could play an accordion. I could no longer tell folks how

much I cared but I could write to them. I had never had a hobby before

but now i take digital pictures and put quotes to them every day and send

them to many. Finding aspects of life to give it meaning and a purpose

helped. I always say that although I cannot speak-I can still love-first

myself enough to care for myself in the best way i know how and others on

a manner which brings them and myself peace and joy. Perhaps finding

your gifts would be a way to start for we all have them. carol

On Thu, 16 Aug 2001 10:06:10 EDT ccomm777@... writes:

> Hey everyone

> Im sure that everyone may be able to relate to this in some way. I

> know we all have different illnesses and different lives etc. Right

> now whats driving me to my bottle of Klonopin is hearing about what

> other people my age are doing in their lives that I cant do now. Im

> 31 (sjogrens, suspected SLE) and my mom calls with all the reports

> on who's getting married whos having a baby and the showers and

> parties etc. None of these things are options for me now with

> symtoms out of control and about 20 drugs in my system My life on

> disability is nothing like my old friends and Im scraping to get by

> when I used to have a hot job with lots of $. Just wanted to see

> how others out there deal with these feelings because I know turning

> to different pills all the time is not the answer, but its all I

> have to calm down. I know other peoples lives around here have gone

> on as usual, and I have to do everything I can to NOT CRY since it

> causes my eyes to flare for days at a time.

> Welcome to the new people on the list and I hope everyone out there

> is feeling as good as possible.

> :-) Colleen

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

> Memorial Page

> http://www.dreamwater.net/lovingmemory/

>

> Message Archives and Digest Attachment Pictures:-

> /messages

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> /files/chat.htm

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

>

> Personal Complaints or problems:-

> Please contact a moderator

> email: -owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you

> to browse. This is an excellent option if you receive alot of

> email.

> 3) Web only/No mail - means that you can pop into eGroups at your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

>

> To subscribe or unsubscribe please email:-

> -subscribe

> -unsubscribe

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on

> to what you believe, even if it's a tree that stands by itself. Hold

> on to what you must do even, if it's a long way from here. Hold on

> to your life, even if it's easier to let go. " - Pueblo Prayer

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

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heather-do they have a disability counsellor at your school? we do here

at all the colleges and universities and the students who utilize it

really get some good help. carol

On Thu, 16 Aug 2001 09:06:58 -0700 " Don & " <handd1@...>

writes:

> Colleen,

>

> I too understand this feeling all too well. I am 22 and trying very

> hard to

> go to school to fulfill my dream of becoming a nurse. I am failing

> at this

> dream so far, since my diseases constantly threaten to have me

> kicked out of

> school. It seems like every time I turn around, something else

> happens, or

> a new diagnosis, or just something bad happens. I know I can't

> control it,

> but I've found that if too many things happen in a row, people tend

> to feel

> that you make things up. (not on this list, but I mean my family)

> It is

> very frustrating! What do I do to keep my sanity? I use this list.

> A lot!

> I try to take things one task at a time, since I do feel overwhelmed

> most of

> the time when things just go wrong like that. I wouldn't feel bad

> for using

> medicines to help you, we all have to give in to them sometimes, I

> certainly

> do. I find this list to be very helpful when times just

> crash.....everyone

> here seems to understand, and I find I get much more info here, than

> I could

> anywhere else! Other than that, I take a nice long bath, light some

> candles, take a nap, and try to indulge as much as I possibly can.

> ;) good

> luck!

>

> Hugs,

>

>

>

> unloading

>

>

> Hey everyone

> Im sure that everyone may be able to relate to this in some way. I

> know we

> all have different illnesses and different lives etc. Right now

> whats

> driving me to my bottle of Klonopin is hearing about what other

> people my

> age are doing in their lives that I cant do now. Im 31 (sjogrens,

> suspected

> SLE) and my mom calls with all the reports on who's getting married

> whos

> having a baby and the showers and parties etc. None of these things

> are

> ns for me now with symtoms out of control and about 20 drugs in my

> system My life on disability is nothing like my old friends and Im

> scraping

> to get by when I used to have a hot job with lots of $. Just wanted

> to see

> how others out there deal with these feelings because I know turning

> to

> different pills all the time is not the answer, but its all I have

> to calm

> down. I know other peoples lives around here have gone on as usual,

> and I

> have to do everything I can to NOT CRY since it causes my eyes to

> flare for

> days at a time.

> Welcome to the new people on the list and I hope everyone out there

> is

> feeling as good as possible.

> :-) Colleen

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

> Memorial Page

> http://www.dreamwater.net/lovingmemory/

>

> Message Archives and Digest Attachment Pictures:-

> /messages

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> /files/chat.htm

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

>

> Personal Complaints or problems:-

> Please contact a moderator

> email: -owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you

> to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

>

> To subscribe or unsubscribe please email:-

> -subscribe

> -unsubscribe

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on

> to what

> you believe, even if it's a tree that stands by itself. Hold on to

> what you

> must do even, if it's a long way from here. Hold on to your life,

> even if

> it's easier to let go. " - Pueblo Prayer

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

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john,thanks for these words of wisdom in coping. carol

On Thu, 16 Aug 2001 12:38:38 -0500 I Wang <jwang@...>

writes:

> Hello Colleen

>

> It's hard to compare our lives in the shadow of illness versus what

> we thought our lives would be. Certainly, I'm trying to come to

> grips with that ever since I was diagnosed back in April after my

> 36th birthday with CHF. That's why I asked my Doctor to put me on

> anti-depressants and to refer me to a Psychologist. He was

> thrilled to do so saying that usually they had to twist peoples arms

> to do that. The way I see it, this is something I had never

> expected to deal with and am unprepared to deal with, there's

> nothing wrong in asking for help with dealing with these issues.

>

> Currently, my therapist wants me to explore the arbitrary limits

> I've placed on my behaviour throughout my life and determine if they

> were ever really fair. I guess it's a way of seeing that this too

> is another restriction we place on our lives and that in reality we

> need to be able to allow ourselves to live our lives. It's

> probably a matter of sorting out what we owe to ourselves and what

> we feel we owe to others and to society. I guess she's figuring on

> digging inhibitions up one by one and reprioritizing them.

>

> I also found that I spent a period of time feeling sorry for myself

> and perhaps still do (though mostly it's a matter of feeling it in

> the pocket book after being somewhat non-chalant for a few weeks).

> I think it is necessary to have a good cry and try to get that out

> of your system.

>

> Regards,

>

>

> ccomm777@... wrote:

>

> > Hey everyone

> > Im sure that everyone may be able to relate to this in some way.

> I know we all have different illnesses and different lives etc.

> Right now whats driving me to my bottle of Klonopin is hearing about

> what other people my age are doing in their lives that I cant do

> now. Im 31 (sjogrens, suspected SLE) and my mom calls with all the

> reports on who's getting married whos having a baby and the showers

> and parties etc. None of these things are options for me now with

> symtoms out of control and about 20 drugs in my system My life on

> disability is nothing like my old friends and Im scraping to get by

> when I used to have a hot job with lots of $. Just wanted to see

> how others out there deal with these feelings because I know turning

> to different pills all the time is not the answer, but its all I

> have to calm down. I know other peoples lives around here have gone

> on as usual, and I have to do everything I can to NOT CRY since it

> causes my eyes to flare for days at a time.

> > Welcome to the new people on the list and I hope everyone out

> there is feeling as good as possible.

> > :-) Colleen

> >

> > ...

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

> Memorial Page

> http://www.dreamwater.net/lovingmemory/

>

> Message Archives and Digest Attachment Pictures:-

> /messages

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> /files/chat.htm

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

>

> Personal Complaints or problems:-

> Please contact a moderator

> email: -owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you

> to browse. This is an excellent option if you receive alot of

> email.

> 3) Web only/No mail - means that you can pop into eGroups at your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

>

> To subscribe or unsubscribe please email:-

> -subscribe

> -unsubscribe

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on

> to what you believe, even if it's a tree that stands by itself. Hold

> on to what you must do even, if it's a long way from here. Hold on

> to your life, even if it's easier to let go. " - Pueblo Prayer

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

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Helen-I was drug addicted and an alcoholic for soooo many years and finally sobered up and cleaned up in 1983 for which i am grateful. I am like you. I have morphine here and other meds my docs have given me "JUST IN CASE" I cannot tolerate the pain but I too want my mind to be clear so do not use. I hate to think where I would be tooday if i had kept on the track of the addictions and am grateful I sobered up before I got real sick. carol

On Thu, 16 Aug 2001 22:34:53 EDT angelbear1129@... writes:

Yes Collen we have all gone through this one way or another. each one faces it in their own way...You are not alone!!! Yes familys go on with out us, and we have to cope with that as best as we can...This list is a lot of help for expressing our feelings!!! Here seems to understand better than any where else...I use to hide behind drugs to make it through too...I was taking 40 mgs of valium a day!!! Just to get through the heartache and dissapointments...Then I found a Dr. that started treating me for what was wrong with me and to cope with everyday problems without the aid of medication...Now I don't take anything that will make my mind fuzzy as I don't like that feeling that I am not in control of me...I hurt so much and I still won't take the pain killers that I have a cupboard full of, cause most of them will make me sleep and I don't like that...But I have gone through all this for 39 years and I have come to terms with it as I can not change what I have to go through!!! I don't want to lie around and feel sorry for myself as to me that just isn't a life! So I cope with it all as best as I can :o) You will find your way to cope also, that will come with time :o) I also has SLE...How is yours affecting you??? Since you have sjogrens and SLE, do you also have Fibromyalgia??? Hang in there and take one day at a time...:o) {{{ Many Special Hugs }}} Helen Hey every one Im sure that every one may be able to relate to this in some way. I know we all have different illnesses and different lives etc. Right now whats driving me to my bottle of Klonopin is hearing about what other people my age are doing intheir lives that I cant do now. Im 31 (sjogrens, suspected SLE) and my mom calls with all the reports on who's getting married whos having a baby and the showers and parties etc. None of these things are options for me now with symtoms out of control and about 20 drugs in my system My life on disability is nothing like my old friends and Im scraping to get by when I used to have a hot job with lots of $. Just wanted to see how others out there deal with these feelings because I know turning to different pills all the time is not the answer, but its all I have to calm down. I know other peoples lives around here have gone on as usual, and I have to do everything I can to NOT CRY since it causes my eyes to flare for days at a time. Welcome to the new people on the list and I hope everyone out there is feeling as good as possible.:-) Colleen I may never see tomorrow; there's no written guarantee, And things that happened yesterday belong to history!!! {{{Sent With Many Hugs}}} Helen ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMemorial Pagehttp://www.dreamwater.net/lovingmemory/Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~

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Hey barb Im glad you were not killed by that ladder!! It is hard figuring out

how much to do bacause a lot of times the bad effects dont show up til later and

who can have fun if you know youll pay for days?? Im glad you have something to

calm you down. Without mine Id lose it sometimes. Take care and talk to you

soon

Love Colleen

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Hello Colleen! How are you?? I sure can relate to most of this...People

just don't understand our limits....sometimes I don't want to understand my

own limits & do things like lift heavy objects....hell,...the other day at

work, I tried to move a ladder, not realizing how heavy it was & it almost

fell on top of me...Anyways, I have been taking some nerve pills to calm

myself lately....It sucks not being able to do what we used to do. Sorry

this letter sounds kinda funny....very tired at the moment, but determined

to do some catching up with all the posts....take care of yourself...hang in

there.

Love,

Barb

unloading

Hey everyone

Im sure that everyone may be able to relate to this in some way. I know we

all have different illnesses and different lives etc. Right now whats

driving me to my bottle of Klonopin is hearing about what other people my

age are doing in their lives that I cant do now. Im 31 (sjogrens, suspected

SLE) and my mom calls with all the reports on who's getting married whos

having a baby and the showers and parties etc. None of these things are

options for me now with symtoms out of control and about 20 drugs in my

system My life on disability is nothing like my old friends and Im scraping

to get by when I used to have a hot job with lots of $. Just wanted to see

how others out there deal with these feelings because I know turning to

different pills all the time is not the answer, but its all I have to calm

down. I know other peoples lives around here have gone on as usual, and I

have to do everything I can to NOT CRY since it causes my eyes to flare for

days at a time.

Welcome to the new people on the list and I hope everyone out there is

feeling as good as possible.

:-) Colleen

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Memorial Page

http://www.dreamwater.net/lovingmemory/

Message Archives and Digest Attachment Pictures:-

/messages

Chat:-

Scheduled Daily Chats at # on IRC DALnet.

/files/chat.htm

Bookmarks:-

Add a website URL you have found useful.

/links

Personal Complaints or problems:-

Please contact a moderator

email: -owner

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

To modify your subscription settings please visit:-

/join

To subscribe or unsubscribe please email:-

-subscribe

-unsubscribe

~~~~ *** ~~~ *** ~~~ *** ~~~~

" Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

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