Re: Life & Possible List Closure?

[Guest guest]

Ok Missy, who do we write. We must defend our little family.

Elodia -

-- In Neurosarcoidosis , " Aisha " <aisha@e...> wrote:

> Hey Gang,

>

> It's my turn for a long winded vent, and really, I have no where

else to go.

> Sorry you're gonna get it all.

>

> I guess it's normal to get to certain phases of life and

think " well this is

> not where I'd thought I'd be. " It just seems that being sick has

taken all

> options away permanently. Yet I'm only 30. Does that mean that the

rest of

> my life is going to be like this? Or just get worse from here?

>

> My husband suffers severe clinical depression. Try finding a doctor

that

> wont say " Oh it's probably because of your situation. " Not that he

has

> looked that hard, but you never want to when you are bogged down in

> depression. Part of me feels responsible, even though my logical

mind knows

> this is how he was when I was well. I do fall into the trap of

thinking " Not

> only can I do nothing to help around the house, but I can do

nothing to help

> my husband. "

>

> Onto list matters, I feel you should know that we have an ex member

of the

> list, banned yesterday, who has apparently reported the NS list -

more

> specifically myself and , because we dared to write and say

no we don

> t want her spam on our list. She got mean. I wrote a total of one

letter,

> she has now apparently reported me to whoever because of

my " spaming " -

> including yahoogroups, to have this list closed. If that succeeds,

I'm just

> going to give up. I can't do this anymore. I have tried so hard and

done so

> much and yet one person writes a million times, saying how " toxic

and

> spiteful " we are.

>

> To top that off, she said that I don't do anything. Don't do

research, don't

> try new theories (says the girl on week one of TB meds trial). This

just

> makes me feel even sicker. She's blacklisted and I won't read her

posts to

> me or see them. It's too upsetting.

>

> What is worse, is that my husband says " Well if you delete them and

don't

> let me help you - don't tell me about it. "

>

> We went to bed last night not talking. I was stressed with that

knot you get

> in your stomach, on top of wanting to puke from the meds. Wake up

and he is

> worse today, and we find out it's going to cost quite a bit to be

on this

> drug therapy, but hopefully our insurance will cover it.

>

> I also - stupidly - looked into adoption yesterday. I guess by 30 I

thought

> I would have adopted a child by now so I wanted to know what went

on. I'm

> not going to have a leg to stand on where that is concerned. Not

that I'm

> well enough or financially able anyhow so its a mute point right

now. It's

> just one more of those things that " pass on by " when you're not

looking.

>

> I feel like my life is shattered and I sometimes wonder why I am

fighting

> and for what? I am sure many of you understand.

>

> Love to you,

> Aisha.

[Guest guest]

I wouldn't write to anyone yet. I just wanted you all to know what was going

on - if anything - as we are a family.

Love you Lodi.

isha.

-- Re: Life & Possible List Closure?

Ok Missy, who do we write. We must defend our little family.

Elodia -

[Guest guest]

Aisha,

My dear, first of all, take a deep breath and try to relax......we

ALL love you and know what hell you have gone through and are going

through. At age 30, it MUST be hell, because it is at 63! And I

know being 30, it is worse......but know you are NOT alone and we are

all behind you......wishing you well and helping all we can.

As for the list.........from one who HAS BEEN THERE! We CANNOT let

them delete this list.......I have regretted deleting my list since

day one! We WILL stay together.........I really think that we need

to get a letter written to the powers to be at Yahoo explaining our

side before something does happen......you know, all they have to go

on is her letter and it does not paint us as favorable. If we just

sit here, we WILL be deleted............we MUST fight back! We

need to compose a letter, send it to the list and get as many

signatures (....LOL.....guess what? A PETITION !! )) and send it

to whoever we must at Yahoo.......I think then the whole thing will

die down............

Sending lots of hugs and prayers for you both,

Darlene

> Hey Gang,

>

> It's my turn for a long winded vent, and really, I have no where else to

> go.

> Sorry you're gonna get it all.

>

> I guess it's normal to get to certain phases of life and think " well this

> is

> not where I'd thought I'd be. " It just seems that being sick has taken all

> options away permanently. Yet I'm only 30. Does that mean that the rest of

> my life is going to be like this? Or just get worse from here?

>

> My husband suffers severe clinical depression. Try finding a doctor that

> wont say " Oh it's probably because of your situation. " Not that he has

> looked that hard, but you never want to when you are bogged down in

> depression. Part of me feels responsible, even though my logical mind

> knows

> this is how he was when I was well. I do fall into the trap of thinking

> " Not

> only can I do nothing to help around the house, but I can do nothing to

> help

> my husband. "

>

> Onto list matters, I feel you should know that we have an ex member of the

> list, banned yesterday, who has apparently reported the NS list - more

> specifically myself and , because we dared to write and say no we

> don

> t want her spam on our list. She got mean. I wrote a total of one letter,

> she has now apparently reported me to whoever because of my " spaming " -

> including yahoogroups, to have this list closed. If that succeeds, I'm

> just

> going to give up. I can't do this anymore. I have tried so hard and done

> so

> much and yet one person writes a million times, saying how " toxic and

> spiteful " we are.

>

> To top that off, she said that I don't do anything. Don't do research,

> don't

> try new theories (says the girl on week one of TB meds trial). This just

> makes me feel even sicker. She's blacklisted and I won't read her posts to

> me or see them. It's too upsetting.

>

> What is worse, is that my husband says " Well if you delete them and don't

> let me help you - don't tell me about it. "

>

> We went to bed last night not talking. I was stressed with that knot you

> get

> in your stomach, on top of wanting to puke from the meds. Wake up and he

> is

> worse today, and we find out it's going to cost quite a bit to be on this

> drug therapy, but hopefully our insurance will cover it.

>

> I also - stupidly - looked into adoption yesterday. I guess by 30 I

> thought

> I would have adopted a child by now so I wanted to know what went on. I'm

> not going to have a leg to stand on where that is concerned. Not that I'm

> well enough or financially able anyhow so its a mute point right now. It's

> just one more of those things that " pass on by " when you're not looking.

>

> I feel like my life is shattered and I sometimes wonder why I am fighting

> and for what? I am sure many of you understand.

>

> Love to you,

> Aisha.

>

>

>

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

> The Neurosarcoidosis Community

>

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>

> Personal Complaints or problems:-

> Please email the moderators

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>

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> 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:-

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>

> To subscribe email neurosarcoidosis-subscribe

> To unsubscribe email neurosarcoidosis-unsubscribe

>

> The moderators will not be doing it for you!

>

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

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

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

>

>

>

[Guest guest]

Love right back to you, Aisha! I've lived with a depressed husband before, and it's not easy even if everything else is going well! I don't think our list will be closed - there are too many of us who need it!

Thank you for taking care of us all - don't ever think you haven't! We will ALL growl and bite the leg of whoever menaces you!

Love,

Jeri

[Guest guest]

Aisha,

Hun, I am so sorry you are going through all this especially now, of all times.

I know without this list when I joined over a year ago I don't know where i'd be right now.

You guys have helped me so much, you have listened to my whining over and over time and time again and have been a wonderful family to me when it seemed I had no one else to turn to I had you.

Well sweetie I know I care about you Aisha and I care about this list I care about each and everyone of you that are apart of this list and I will do my part to help keep this list just let me know how i can help.

Please get some rest and not worry I will pray about it I know God didn't let you make it this far for everything to fail now.

Maybe we do need a petition i don't know anything about such things but i'm sure we all can figure something out after all you have been there for us.

And lastly I'm sure G must love you and try not to blame yourself for his depression like you said before it was there before you got sick so it would be there whether you were sick or not.

Big hugs sweetie and I love ya,

Lord, let me let you Lead me!

Jan Bovitz

[Guest guest]

Aisha, Tracie and have the most wisdom, Jan so much caring, Quint is,

well, Quint; everybody on this list has a special gift. I wish I had some

answers for you, but heck, I can't even figure out my own problems. All I

know is that despite the fact that this is not the life you envisioned or

wanted, you make the world such a better, brighter place. I can't imagine

where I'd be right now if I hadn't found this group and you. Remember, it's

okay to fall apart, just make sure you have a soft place to fall, which I'm

going to try to help you with, when I get to the post office. Hah! Now

you're curious, aren't you? So, hang tough or hang ten, whatever suits you.

Love, Rose

Life & Possible List Closure?

> Hey Gang,

>

> It's my turn for a long winded vent, and really, I have no where else to

go.

> Sorry you're gonna get it all.

>

> I guess it's normal to get to certain phases of life and think " well this

is

> not where I'd thought I'd be. " It just seems that being sick has taken all

> options away permanently. Yet I'm only 30. Does that mean that the rest of

> my life is going to be like this? Or just get worse from here?

>

> My husband suffers severe clinical depression. Try finding a doctor that

> wont say " Oh it's probably because of your situation. " Not that he has

> looked that hard, but you never want to when you are bogged down in

> depression. Part of me feels responsible, even though my logical mind

knows

> this is how he was when I was well. I do fall into the trap of thinking

" Not

> only can I do nothing to help around the house, but I can do nothing to

help

> my husband. "

>

> Onto list matters, I feel you should know that we have an ex member of the

> list, banned yesterday, who has apparently reported the NS list - more

> specifically myself and , because we dared to write and say no we

don

> t want her spam on our list. She got mean. I wrote a total of one letter,

> she has now apparently reported me to whoever because of my " spaming " -

> including yahoogroups, to have this list closed. If that succeeds, I'm

just

> going to give up. I can't do this anymore. I have tried so hard and done

so

> much and yet one person writes a million times, saying how " toxic and

> spiteful " we are.

>

> To top that off, she said that I don't do anything. Don't do research,

don't

> try new theories (says the girl on week one of TB meds trial). This just

> makes me feel even sicker. She's blacklisted and I won't read her posts to

> me or see them. It's too upsetting.

>

> What is worse, is that my husband says " Well if you delete them and don't

> let me help you - don't tell me about it. "

>

> We went to bed last night not talking. I was stressed with that knot you

get

> in your stomach, on top of wanting to puke from the meds. Wake up and he

is

> worse today, and we find out it's going to cost quite a bit to be on this

> drug therapy, but hopefully our insurance will cover it.

>

> I also - stupidly - looked into adoption yesterday. I guess by 30 I

thought

> I would have adopted a child by now so I wanted to know what went on. I'm

> not going to have a leg to stand on where that is concerned. Not that I'm

> well enough or financially able anyhow so its a mute point right now. It's

> just one more of those things that " pass on by " when you're not looking.

>

> I feel like my life is shattered and I sometimes wonder why I am fighting

> and for what? I am sure many of you understand.

>

> Love to you,

> Aisha.

>

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives and Digest Attachment Pictures:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

> Bookmarks:-

> Add a website URL you have found useful.

> http://groups.yahoo.com/group/Neurosarcoidosis/links

>

> Personal Complaints or problems:-

> Please email the moderators

> mailto:Neurosarcoidosis-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:-

> http://groups.yahoo.com/group/Neurosarcoidosis/join

>

> To subscribe email neurosarcoidosis-subscribe

> To unsubscribe email neurosarcoidosis-unsubscribe

>

> The moderators will not be doing it for you!

>

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

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

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

>

>

>

[Guest guest]

Excuse me?

There is no way because there is no spam coming from this list.

You have done more research than anyone I know. and I have learned a lot from you.

If it is the one I think I feel it is my fault she was here in the first place.

If enough letters are written by members of this list, they will not close it down but will hers.

Sharon

Life & Possible List Closure?

Hey Gang, It's my turn for a long winded vent, and really, I have no where else to go.Sorry you're gonna get it all. I guess it's normal to get to certain phases of life and think "well this isnot where I'd thought I'd be." It just seems that being sick has taken alloptions away permanently. Yet I'm only 30. Does that mean that the rest ofmy life is going to be like this? Or just get worse from here? My husband suffers severe clinical depression. Try finding a doctor thatwont say "Oh it's probably because of your situation." Not that he haslooked that hard, but you never want to when you are bogged down indepression. Part of me feels responsible, even though my logical mind knowsthis is how he was when I was well. I do fall into the trap of thinking "Notonly can I do nothing to help around the house, but I can do nothing to helpmy husband." Onto list matters, I feel you should know that we have an ex member of thelist, banned yesterday, who has apparently reported the NS list - morespecifically myself and , because we dared to write and say no we dont want her spam on our list. She got mean. I wrote a total of one letter,she has now apparently reported me to whoever because of my "spaming" -including yahoogroups, to have this list closed. If that succeeds, I'm justgoing to give up. I can't do this anymore. I have tried so hard and done somuch and yet one person writes a million times, saying how "toxic andspiteful" we are. To top that off, she said that I don't do anything. Don't do research, don'ttry new theories (says the girl on week one of TB meds trial). This justmakes me feel even sicker. She's blacklisted and I won't read her posts tome or see them. It's too upsetting. What is worse, is that my husband says "Well if you delete them and don'tlet me help you - don't tell me about it." We went to bed last night not talking. I was stressed with that knot you getin your stomach, on top of wanting to puke from the meds. Wake up and he isworse today, and we find out it's going to cost quite a bit to be on thisdrug therapy, but hopefully our insurance will cover it. I also - stupidly - looked into adoption yesterday. I guess by 30 I thoughtI would have adopted a child by now so I wanted to know what went on. I'mnot going to have a leg to stand on where that is concerned. Not that I'mwell enough or financially able anyhow so its a mute point right now. It'sjust one more of those things that "pass on by" when you're not looking. I feel like my life is shattered and I sometimes wonder why I am fightingand for what? I am sure many of you understand. Love to you, Aisha.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-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:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Oh Aisha,

I want to give you big hugs and kisses (on the cheek of course!)

Sorry to here you feeling so low - you should feel sorry for this

person who is feeling bitchy. She is real sad - don't let her get to

you. She needs help.....

I wish I could help you, but be sure that you have all the group's

love and prayers.

Jim (in the uk)