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

[Guest guest]



Just a short response about the group.. I did say I was trying to spend time doing things other than the group, and I have. I have a son that has just finished a year and a half of college, even though he's still here in Tennessee.. he's 3 hours away.. and still wants me involved in his life and I do want to be there. Within the last two months, I've found a real life caring doctor that has researched my anemia issues and I've been diagnosised with Portal Hypertension, Cirrhosis of the Liver and a huge fatty liver. I can't walk from here to the door without getting short of breath..

I'm gonna tell ya, we've all felt like we are not liked.. we are not respected.. we are not loved.. I've answered peoples post as well over the last 7 years that never respond so I feel like that unless I was Tracie no one wanted my answers.. I have left the group before and let me tell ya.. just a little appreciation is better than being in the Sarc world alone.. I've been there and the systems ate me alive and I'm talking about the health care system.. which I was a part of for 25 years before sarc entered my life.. Right now..my family comes first.. after all they are the ones that have to pick me up with I fall on my face, or can take phyically care of myself. They are the ones that tell me.. they love me and will be there for me 24 hours aday. This is a support group, yes.. but even the support group can't be with you 24 hours aday..and it never was intention of being that for anyone.

I've been here reading post. Darlene is fast on the gun. she's worked hard trying to get things done in a timely manner. She has family that also wants and needs her attention. Tracie, is very ill and has to come here and explain what she's been doing.. she's got family that wants and needs her around and her attention. We give what we can.. It may not be enough.. But its all we can offer..

NS 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

[Guest guest]

,

Thank you for your response. I am so glad that you have finally found a doctor to give you the care you so deserve. I know that it's been a challenge for you for the last 8 yrs. It sounds like they are finally addressing the issues, and that with proper care, you will become healthier!

I am also so very glad that Damian wants and needs you in his life. Just the last couple of years of high school where such an uphill battle, and I know that so many times, it's our kids who take the brunt of our chronic illness ad the inability that comes with it. We end up on the sidelines (at home) instead of on the playing field-- and it's hell.

For those who are new, adopted Damian when he was 10 or so- (if I remember correctly) and what a gift he has been to and to him. It isn't long before they are grown, gone - involved with their own lives-- and we can celebrate the adults they have grown into. It also means that they need us less and less-- blessing and a curse...

We are solid as a group-- and we all need and deserve the love and attention of each other-- and somedays, it's just not there to give. I know you all have those days. It doesn't mean we don't care-- it' means we are as worn out as you are.

Normally, when a member leaves-- there isn't alot of comment. brought up an important issue, and that is what I want to address--

What can we do to make this group more supportive? What do you need from us? What can you contribute?

Let us know, and we'll move forward into a better and brighter and more supportive community.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sat, January 2, 2010 5:57:45 PMSubject: Re: Fw: [NSMods] Re: why i left

 Just a short response about the group.. I did say I was trying to spend time doing things other than the group, and I have. I have a son that has just finished a year and a half of college, even though he's still here in Tennessee.. he's 3 hours away.. and still wants me involved in his life and I do want to be there. Within the last two months, I've found a real life caring doctor that has researched my anemia issues and I've been diagnosised with Portal Hypertension, Cirrhosis of the Liver and a huge fatty liver. I can't walk from here to the door without getting short of breath..

I'm gonna tell ya, we've all felt like we are not liked.. we are not respected.. we are not loved.. I've answered peoples post as well over the last 7 years that never respond so I feel like that unless I was Tracie no one wanted my answers.. I have left the group before and let me tell ya.. just a little appreciation is better than being in the Sarc world alone.. I've been there and the systems ate me alive and I'm talking about the health care system.. which I was a part of for 25 years before sarc entered my life.. Right now..my family comes first.. after all they are the ones that have to pick me up with I fall on my face, or can take phyically care of myself. They are the ones that tell me.. they love me and will be there for me 24 hours aday. This is a support group, yes.. but even the support group can't be with you 24 hours aday..and it never was intention of being that for anyone.

I've been here reading post. Darlene is fast on the gun. she's worked hard trying to get things done in a timely manner. She has family that also wants and needs her attention. Tracie, is very ill and has to come here and explain what she's been doing.. she's got family that wants and needs her around and her attention. We give what we can.. It may not be enough.. But its all we can offer..

NS 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

[Guest guest]



Tracie

I want you and all to know how much I appreciate this group. I don't know enough to help out myself but I do know good advice when I hear it.

I know the amount of time and effort that is put into supplying answers to questions and symptoms.

You are very knowledgeable that we sometimes take you for granted. For that I apologize.

I do have to say I like it when you get a little pissed off. It is a nice kick in the ass for all of us.

You are right about us messing with our own heads. Only we can make ourselves important and loved. Sometimes no matter what others say we don't let it register in our brains.

You let me make myself feel important and loved. Keep up the good work.

God bless and keep you and make you let yourself feel loved and needed.

As always with great respect

Jackie

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

[Guest guest]

Thank you, and lets keep the comments coming, I want this group to be as healthy as we can be-- together. To do that, we- the owners and moderators, need to hear from you and if you have a problem, lets address it-- and not allow ourself to stew for months-- it's easier to eat an elephant one bite at a time..

To: Neurosarcoidosis Sent: Sat, January 2, 2010 7:37:46 PMSubject: Re: Fw: [NSMods] Re: why i left

 Tracie

I want you and all to know how much I appreciate this group. I don't know enough to help out myself but I do know good advice when I hear it.

I know the amount of time and effort that is put into supplying answers to questions and symptoms.

You are very knowledgeable that we sometimes take you for granted. For that I apologize.

I do have to say I like it when you get a little pissed off. It is a nice kick in the ass for all of us.

You are right about us messing with our own heads. Only we can make ourselves important and loved. Sometimes no matter what others say we don't let it register in our brains.

You let me make myself feel important and loved. Keep up the good work.

God bless and keep you and make you let yourself feel loved and needed.

As always with great respect

Jackie

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

[Guest guest]

I APPRECIATE THE ENTIRE GROUP BEING AVAILABLE TO ME.OUT OF SIX HUNDRED MEMBERS,VERY FEW ARE ARE ACTIVE PARTICIPANT FOR VARIOUS REASON.WHEN ONE PERSON RESPOND I APPRECIATE IT.THE RESPONSE DOE NOT HAVE TO HAVE MY NAME ON IT.SOMETIMES I RESPOND AND I ADDRESS THE MEMBER THAT WROTE THE EMAIL.SOMETIMES I SEND AN EMAIL TO TRACIE THAT SOMEONE ELSE SENT ME AND I ASK HER TO PASS IT ON THE THE GROUP JUST IN CASE I DID NOT DO IT CORRECTLY. WHEN I FEEL LEFT OUT I TOO HAVE TO SEARCH WITH AND SEE WHY I FEEL THAT WAY AND I HAVE TO ASK MYSELF WHAT IS IT THAT I NEED AND WHO CAN MEET THOSE NEEDS FOR ME.JESSICA I THINK THAT IT WOULD HELP ME IF YOU WOULD STATE WHAT YOU ARE FEELING WHEN YOU SEND AND EMAIL TO THE GROUP.I THINKS MEMBERS WOULD RESPOND.WHEN THE GO ON THE SITE AND CATCH UP WITH OLD POST AND READ RECENT POST.WHEN I FEEL LEFT OUT I TRY TO TELL SOMEONE THAT CAN HELP

ME. IT IS APPARENT THAT YOU DESIRE ATTENTION FROM THIS GROUP AND THAT IS OK BUT KNOW YOU ARE DEALING A GROUP THAT MAY OR MAY NOT BE ABLE TO MEET YOUR AT THE EXACT TIME YOU ARE IN NEED.BUT THE WILL EVENTUALLY RESPOND BECAUSE THE GROUP CARE.JESSICA,DARLENE AND TRACIE BE ENCOURAGEDHELENSubject: Fw: [NSMods] Re: why i leftTo: neurosarcoidosis , NSMods-owner Cc: " Abouhamama" Date: Saturday, January 2, 2010, 3:56 PMGuys, 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 AMSubject: [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