Re: Thanks for being there...

[Guest guest]

Sorry for the loss of your furry friends. I know the feeling. I have Mittens who is now 9 and I know at some point she will leave me and I will be heartbroken. She has brought such joy to & I. Take care of yourself. MattSubject: Thanks for being there...To: Neurosarcoidosis Date: Wednesday, January 6, 2010, 2:39 AM

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 (AT) yahoo (DOT) com

>

> From: tracie feldhaus <tiodaat2001@ ...>

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

> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com

> Cc: " Abouhamama" <JessicAbouhamama@ ...>

> 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 (AT) yahoogroups (DOT) com

> 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

>

[Guest guest]

,

Over the years we'e had several cats and a few dogs. I know how important they are in my life, and how much I depend on them to keep me company. Our pets are like our children, and I know that since Tor has left home, I really appreciate the critters even more.

To those insensitives that don't get it-- screw em. Your feelings are very real, and honest. And it is ok to share even our grief here. Often I find myself looking at the grief that is triggered when a loved one dies-- and even if it's "only" a pet--- it is another part of the grief I feel in living with chronic illness. Neither is fun-- and if we stay holed up-- avoiding everyone and everything-- we cheat ourself from getting the support we need during these trials.

With compassion,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tue, January 5, 2010 11:39:50 PMSubject: Thanks for being there...

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 (AT) yahoo (DOT) com> > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Fw: [NSMods] Re: why i left> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com> Cc: " Abouhamama" <JessicAbouhamama@ ...>> 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 (AT) yahoogroups (DOT) com> 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>

[Guest guest]

, I am so sorry to hear of the loss of your cat.  I don't have cats, never really been around them until lately when my son moved back home between jobs, he brought a little Kitty with him, and she is so sweet, I never

knew how sweet they can be, I will miss her when he moves back out, but I have my dogs, and I call them forever toddlers in fur, because they remind me of my kids when they were little ones, and I love having them

around.  I have 2 and one adopted just like my kids, I have a special needs dog too, and people are always telling me to put him down, and they just don't understand how special he is to me, I would never do that.  I have had 2 special dogs in my life, one growing up, he was 13 when he died, and I was 16, it

was the hardest thing ever.  Then we had a dog for 10 years, he was my friend when the kids went to school, and when he died I thought at first that we would never have an animal again, as like you say, it's just so hard losing them, and with in a couple months, I got a puppy, he is my special needs dog.

now we have 3, and my heart will break when they too are gone.  People who never had a pet do not understand how close we get to them, that they are family, not just a pet.  I know new pets never replace old ones, but I did find that it helped me get through the very lonely

feeling I had.  Have you thought of getting another kitty?  Did you know that they help with our illness, they help just by loving us unconditionally too. Just a thought.  You are in my thoughts and prayers. Marla

 

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

>

[Guest guest]

Thank you, Matt. I hope and pray that Mittens will be with you and for many more happy, playful years. Aren't pets amazing? People with pets have lower blood pressure, too. I appreciate your response, and your understanding. I tried for over an hour to figure out how to post photos so you could see them, but * & %$@@#^!! I am NOT tech-savvy!Sending you all lots of smiles, hugs, and purrs!Ps...I did figure out how to change colors in the text feature! Hooray!To: Neurosarcoidosis Sent: Wed, January 6, 2010 7:02:01 PMSubject: Re: Thanks for being there...

Sorry for the loss of your furry friends. I know the feeling. I have Mittens who is now 9 and I know at some point she will leave me and I will be heartbroken. She has brought such joy to & I. Take care of yourself. MattFrom: shanniemel <shanniemel (AT) yahoo (DOT) com>Subject: Thanks for being there...To: Neurosarcoidosis@ yahoogroups. comDate:

Wednesday, January 6, 2010, 2:39 AM

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 (AT) yahoo (DOT) com

>

> From: tracie feldhaus <tiodaat2001@ ....>

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

> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com

> Cc: " Abouhamama" <JessicAbouhamama@ ...>

> 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 (AT) yahoogroups (DOT) com

> 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

>

[Guest guest]

Thank you, Tracie. What a nice message. I am so touched by your insight. I know I do "hole-up" --but that's mostlly due to my health....ok, make that physical health...the rest is definitely caused by mental health (or lack thereof!). Bless you for your support--for responding and for your encouragement and understanding.To: Neurosarcoidosis Sent: Wed, January 6, 2010 9:22:00 PMSubject: Re: Thanks for being there...

,

Over the years we'e had several cats and a few dogs. I know how important they are in my life, and how much I depend on them to keep me company. Our pets are like our children, and I know that since Tor has left home, I really appreciate the critters even more.

To those insensitives that don't get it-- screw em. Your feelings are very real, and honest. And it is ok to share even our grief here. Often I find myself looking at the grief that is triggered when a loved one dies-- and even if it's "only" a pet--- it is another part of the grief I feel in living with chronic illness. Neither is fun-- and if we stay holed up-- avoiding everyone and everything-- we cheat ourself from getting the support we need during these trials.

With compassion,

Tracie

NS Co-owner/moderator

From: shanniemel <shanniemel (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, January 5, 2010 11:39:50 PMSubject: Thanks for being there...

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 (AT) yahoo (DOT) com> > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Fw: [NSMods] Re: why i left> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com> Cc: " Abouhamama" <JessicAbouhamama@ ...>> 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 (AT) yahoogroups (DOT) com> 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>

[Guest guest]

You are most welcome. Take care. MattFrom: shanniemel <shanniemel (AT) yahoo (DOT) com>Subject: Thanks for being there...To: Neurosarcoidosis@ yahoogroups. comDate:

Wednesday, January 6, 2010, 2:39 AM

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 (AT) yahoo (DOT) com

>

> From: tracie feldhaus <tiodaat2001@ ....>

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

> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com

> Cc: " Abouhamama" <JessicAbouhamama@ ...>

> 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 (AT) yahoogroups (DOT) com

> 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

>

[Guest guest]

Dear Marla,Thank you so much for your kind words. I am overwhelmed to have found three responses to my post already, (I didn't really expect any --except a few "get over it"s). What amazing and supportive people on the site. Before I got really sick, I did rescue volunteering for a local shelter; mostly fostering. I ended up working with a lot of "sute-inu, sute-neko" That translates to thrown-away dogs and cats. Most of them were old and/or disabled. I was successful in adopting out many of them, but a few have remained simply because I could not relinquish them to the shelter to be destroyed simply because no-one was able to see their value. Except me. It would go against everything I believe to kill someone because of physical or mental limitations. Of the many (animals) who have passed

through here, the ones who remain will be with me until one of us passes. Then, I pray my family will honor my last wishes and either keep them or find them good homes. It seems like everyone wants a cute little baby; few people are willing to take on someone with special needs, so I praise you for your good heart. I am proud to know you. The 2 kitties I lost this past year were my own--yes they were rescued--Rebound from a drainage ditch by firefighters, and Danny by my local vet when the mother cat was killed (I raised 4 of them--talk about a hand-full!!!!). But they were ones I adopted. The others found/adopted me!!! Lots of good and funny memories there! I try to concentrate on those. It just isn't always easy...especially lately. I would post photos, but I haven't been able to

figure it out, yet. I miss them so very much I keep finding myself thinking I see them out of the corner of my eyes--you know---like getting a flash of them. I'd like to believe it is their spirits still looking in on me. (Maybe I'm a nutcase). Oh well.Thank you again for your understanding and kindness. Sorry to have gone on for so long.... I can bore folks to death talking about my fur-mily. ()thanks and smileshugs and purrs/woofs,(shanniemel)To: Neurosarcoidosis Sent: Wed, January 6, 2010 10:26:52 PMSubject: Re: Thanks for being there...

, I am so sorry to hear of the loss of your cat. I don't have cats, never really been around them until lately when my son moved back home between jobs, he brought a little Kitty with him, and she is so sweet, I never

knew how sweet they can be, I will miss her when he moves back out, but I have my dogs, and I call them forever toddlers in fur, because they remind me of my kids when they were little ones, and I love having them

around. I have 2 and one adopted just like my kids, I have a special needs dog too, and people are always telling me to put him down, and they just don't understand how special he is to me, I would never do that. I have had 2 special dogs in my life, one growing up, he was 13 when he died, and I was 16, it

was the hardest thing ever. Then we had a dog for 10 years, he was my friend when the kids went to school, and when he died I thought at first that we would never have an animal again, as like you say, it's just so hard losing them, and with in a couple months, I got a puppy, he is my special needs dog.

now we have 3, and my heart will break when they too are gone. People who never had a pet do not understand how close we get to them, that they are family, not just a pet. I know new pets never replace old ones, but I did find that it helped me get through the very lonely

feeling I had. Have you thought of getting another kitty? Did you know that they help with our illness, they help just by loving us unconditionally too. Just a thought. You are in my thoughts and prayers. Marla

On Wed, Jan 6, 2010 at 12:39 AM, shanniemel <shanniemel (AT) yahoo (DOT) com> wrote:

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 (AT) yahoo (DOT) com

>

> From: tracie feldhaus <tiodaat2001@ ...>

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

> To: neurosarcoidosis@ yahoogroups. com, NSMods-owner@ yahoogroups. com

> Cc: " Abouhamama" <JessicAbouhamama@ ...>

> 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 (AT) yahoogroups (DOT) com

> 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

>