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OK, So I'm guilty of not logging in to the group for a long while also. You all

probably don't remember me...it's been that long. Here's what has been going on

with me...my beloved cat of 13 years, Danny, died. I am having a very very hard

time dealing with the grief. In March of 2009, I lost my other cat, Rebound. She

was 18 years old. I can't take anymore loss right now. I feel SO alone.I don't

think I can stand to hear one more: " But it's just a CAT, for cryin' out

loud... " Don't respond if you are going to give me THAT lecture. I live alone.

Danny was practically all the family I had since Rebie passed away. I raised him

from a week old, using a bottle and formula. I guess I really depended on Danny

since I lost Rebound. He was a lot younger, and he had received a clean bill of

health at his last senior checkup. His loss has devastated me...It was EXTREMELY

sudden/totally unexpected. My heart has broken; who could imagine such a little

creature could leave such an ENORMOUS hole in my life and my heart. I have never

felt so alone in my life, and I don't think anyone gets it. Anyway, that's where

I've been. (sigh) Sorry to be so morose.

I know that is the last thing any of us needs; we all need to be uplifted and

encouraged. Quite frankly, though, I just don't feel like I have anything upbeat

to contribute, so I've been staying silent to spare everyone my grief. You are

all in my thoughts, my heart, and my prayers, though, just the same.

shanniemel@...

>

>

> Subject: Fw: [NSMods] Re: why i left

> To: neurosarcoidosis , NSMods-owner

> Cc: " Abouhamama "

> Date: Saturday, January 2, 2010, 3:56 PM

>

> Guys, we were sent an email from this morning, and it has prompted

some important responses and communication within the group. 

> So many times I come online and the posts to the group are simple statements

of birthday greetings and single line or word responses to whatever. 

> I know that by not sending answers to every post -- that you all sometimes

feel like .  Unloved, unimportant, and insignificant. 

> I can tell you this is not the case.  Personally, my energy resources are

spread as thin as it gets-- just answering the posts where someone wants some

guidance.  I can also tell you that I do read EVERY single post-- and if there

is a question (the subject line often doesn't give us a clue that you have an

important issue as you may send it as a reply to something like a  birthday

wish) and many people figure it's just another greeting -- so they don't

bother. 

> As an owner- I've always tried to make sure that the questions are answered,

and that we open discussions on issues that come up for all of us.  I research--

search for articles that can show you the medical information out there that can

be of help with your concerns--and that you can print out and share with your

docs.  I can tell you that it is VERY time consuming-- and requires that I read

multiple articles to find one that best supports the concerns.

> As many of you know, this last several years-- we've had a tough time with

having our moderators healthy, Darlene was offline for almost a year and much of

the groups needs were being met by just myself and Rose and Marla.  and

Debbie and Kim-- have all been to sick and to tired to be online much-- so that

has really put the burden of a group of now 600+ members on the backs of a

couple of us. 

> Rose has reached a burn-out point-- and I've not heard from her in too long. 

has stated several times that she is spending her time and energy doing

things other than just the group-- and that is how it should be.  Deb was in a

flare, last I heard.  Kim hasn't been around for a couple of years-- and though

we refuse to let her off-- she's not getting even the emails unless it's a

special notice. 

> We are a support group, and an information access for all of you.  Yep, we get

busy like everyone else, we have lives outside this group, and it does take a

tremendous amount of energy to be there for everyone's individual posts. 

> That is where I fall short-- I have to use the precious little energy I have

doing the research.  I don't and won't feel guilty or take on the insecurities

of every member-- as to do so would be physical and emotional suicide-- and only

make it impossible for me to be healthy enough to do the research.  I have to

leave that to the members to support each other in that area. 

> To think that ANY   one person is not important, or not " liked " -- on a board

where there are few faces to go with the posts (there is safety in anonimity) is

ridiculous.  None of this personal.  It is truly that all of us have to protect

our energy-- and believe me-- we all put out a tremendous amount of energy

holding the hearts and hands of our members. 

> I know that many times our sickness itself robs us of feeling good about

ourself.  Sometimes, it's because the sarcoidosis is effecting the part of our

brain that handles these emotions.  Sometimes it's because we are naturally

insecure-- even before we became sick.  All of us have these kinds of

insecurities. 

> When I get into these places myself, I have to stop and ask myself why or what

is making me feel unloved.  Is it my own self-talk and personal feelings of

inadequacy?  When I do this-- I realize that the only real person screwing with

my mind is ME!  To put it bluntly- and I will piss some of you off, the only

person fucking with my head is me. 

> No one is to my knowledge going offline and saying " so and so is such a ass "

or whatever.  I don't believe that our members are that small minded.  I know

NONE of us have the energy to spend doing that-- if I did, it' wouldn't be about

the members of the group-- I can figure ways to waste that energy just on family

dynamics alone. 

> I'm sorry that or Darlene or any member feels unimportant.  It's not

the case-- and since they don't have the energy to put forth posts daily, to

each and every member-- maybe they need to cut the others some slack-- to expect

that we can reach down and be there every time for every post is selfish-- and

honestly, I " m a bit pissed off. 

> I wanted this to be a post that states that YOU ARE ALL IMPORTANT! YOU ARE! 

SO STOP SCREWING WITH YOUR HEAD AND GET ON WITH IT!  For each time you reach out

and share a concern-- someone answers-- eventually.  Some hide it in posts that

have nothing to do with your issue-- so if you're thinking that you should get

back a post with your name on it - as in a personal letter, you'll miss that

someone did answer just not in the way you expect.

>  

> That's my take on this issue-- and feedback is welcomed,

> Tracie

> NS Co-owner/moderator

>  

>  

>

>  

>

>

> ----- Forwarded Message ----

>

> To: jessicabouhamama@...

> Cc: nsmods

> Sent: Sat, January 2, 2010 7:51:09 AM

> Subject: [NSMods] Re: why i left

>

>  

>

>

> Dear ,

>        I was saddened when I saw a notice where you had left the group. 

Please reconsider.  You are important

> to us and helpful..... ..and you need us also as much as we need you.   You

are right about the Mods all being

> sick and us two owners also.  As for you not getting any answers ----- you are

not the only one!  I have sent

> emails to the list many, many, times and NO ONE has responded!  That makes an

Owner really feel unloved

> and unwelcome.  Also, when someone requests help or etc and I answer, most of

the time, I never hear a

> " thank you " or anything.... ....I never even know if they read it or not!   I

know people on the list are sick -- or

> they would not be here........ .but it bothers me when my emails are not

answered but others are .........I do

> not know the answers but I will tell you that I seriously thought about

leaving the list also.   However, I have

> been sick since last Spring and I knew that if I was a bit weller, I would not

want to leave, so I did not.

>  

>        I hope you will reconsider your decision.  If not, I wish you a healthy

year, lots of happiness, and hope

> you find someone to chat with about this Sarc Monster.

>  

> Sincerely,

> Darlene

> Co-Owner/Moderator

>  

>  

>  

>

> why i left

>

>

> This has been going on for a long time ,, and we addressed this several times.

i have been with this group a good many years and I don't know what happend.

> but , i feel like i am not liked very much. I know the moderaters are sick and

have problems and respond when they can. but others respond to only certin

people's posts and mine are not one of them. I've posted many time in the last

year and only had responces back once or twice.

> I fell alone in this as far as this group. like i am invisable. I never was

nothing but helpful and caring and i get nothing back but silence. soooo whats

the use to keep trying.

> I wish you all the best and hope you all find peace in this horror we are

living.

> thank you

>

>  

> Many blessings and a pain free day

>

> Please support Neurosarcoidosis society

>

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