HI again

[Guest guest]

It's my once a quarter posting... I am two steps closer to the SSI I

applied for and I need some input cos I'm pretty scared.

(US folks, obviously, this applies to you mostly.)

I had a shrinks appointment two weeks ago. I don't know if I'm

mentally deranged or not, but I do know my memory really hosed me in

the testing. That could be good or bad. Part of my claim is about

depression. I have over 18 years of documented mental fun.

in two weeks I meet with the assigned physician about EDS. I'm

petrified. Has anyone done this? What was said? How does someone who

hasn't seen me on a regular basis supposed to make a diagnosis?

help??

Cathe

(PS..hi again to all the gals from the trip to vegas, I'll email this

weekend...it's been nuts)

[Guest guest]

,

I read you post with great sadness.

I am very sorry to hear that you don't feel as if you received the support you would have liked from this group.

I have to disagree with you, though. I have been a part of this group since the very beginning and have seen more people respond to the needs of other than I can remember.

Sometimes, when a post is not answered it because the members don't have any answers for you. I know for a fact that I will not respond to certain questions because I don't have any experience with whatever the subject is. Add the fact that some people are not on their computer all the time, or are suffering from a flare, etc. and you get unanswered questions. Very few, of that I am sure.

We are only people, suffering from the same disease. We aren't professionals, nor do we profess to be. Unfortunately, we cannot be everything that everybody needs, and I'm very sorry to hear that you are one of those. I think you will find there are many in the group who feel that everyone has been extremely helpful and caring.

This is not a "clique" type group. Some people post a lot more than others. Some are much more active than others. That does not make a "clique". Some of us have been around for several years and, therefore, know each other better. As with any group of individuals, you are going to find the some people form bonds with others.

I hope you find what you are seeking. We will always be here if you need us.

Hugs,

Jo

[Guest guest]

Dear

Im sorry as well that you feel the group on a whole has not been

supportive to you. I only recently joined the group about a month ago

and have personally found this group to be supportive of new comers

as well as those that have been posting here from the start.

This group in my opinion is a rare find, people taking time out of

their days to check in, respond to anothers question if they have

experienced similiar issues or have a remedy for a problem and in

general have shown support for ones who are down and have rooted

people on who have a break through if you will.

But just as with any other group, if you arent happy its best to part

if you feel its not right for you. You will be missed however. Take

care of yourself , know that you're thought of and all hope

that you have less painful days.

Donna

[Guest guest]

- Although I happened on you post while I was at work today I intentionally waited until I got home tonight to respond. I wanted time to sit with the feelings and reactions I was having and to take a moment to respond with careful consideration. It truly bothers me that you are apparently so dissatisfied with your experience here.

First off, I believe that this IS a terrific group. Do we meet everyone's needs? Nope, can't do that. As a member of an internet group where folks who share a common disease and correspond without ever having met one another, I personally can't take on the idea that I have a responsibility for "someone who is really bad off mentally and (you) could be a catalyst in that persons fate." I hardly mean to sound cold-hearted but that's not my role here.....That's my job at work. I am here to both give and receive support.....nothing more or less.

As others have said, there are posts that we find that we can "relate to" and we respond. A lack of response, however, does not necessarily equate with a lack of caring. Lord knows I have posted plenty of times and not received a response. That's okay. I just keep yakking and trying to stay involved.

I have found this group to typically be a warm and supportive place. There are literally hundreds of people that come and go here. Not that they aren't very important....they are...but I certainly could never keep track of them nor would I expect anyone else to be able to keep track of me. Each of us are stuggling. Our lives are hard. If by our support just one person here feels less alone in their struggle then I believe the group has served a valuable purpose. In turn, if I gain just one supportive connection for myself then the group holds value for me. I find that I get back at least as much as I give and, without keeping score, like to think that I give as much as I get. It works for me. I hope that should you decide to leave that you find what you need, but I also hope that you will think about posting more, getting involved, and seeing if your view changes. Can't hurt, might help. My sincere

good wishes to you - Barbara

wrote:

Dear Group,I have to admit, when I joined this group, I was desparate. I thought this group would be a way for me to learn information that is out there on RSD and would also be a group that would be there in my darkest hour. I also, of course, wanted to be there for others too. However, this is not what I found on a whole for this group. I have met 2 people that are wonderful and I keep in touch with them, but I thought that there would be more support than I found. What I found was a click of people who only helped each other. I have tried to join in, answering email that wasn't directed toward me, adding my "two cents" but never recieved any response. I have posted messages and never received a response. I have recommended this group as caring and loving people, but I guess I should have told them that that only applies to

those within the click. I felt that I needed to get this out in the air. I haven't been part of this group for about a month, no one has asked where I was or even noticed that I was gone. I wanted to make sure that you all took notice of this for future group members. Make sure you don't leave them out, you (meaning the whole group) could leave out the wrong person, someone who is really bad off mentally and you could be a catalyst in that persons fate.I pray that all of you will experience pain free or at the least pain less days. I will keep all of you in my prayers as we all seek out the right to have a life, despite our disease.

[Guest guest]

, I think sometimes we all get in such pain ourselves that we go days without reading. I know I do because I work and come home and die. I am relatively new, in fact, I can't remember when I "joined." I see other friendships but have realized that with time I too will have them. Once we share others share. We all have the one thing in common and its RSD in some way and it stinks! I get sooooooooooooooo angry and sometimes if I can't have someone there right then I get upset but online friends are not always available. I would love to be here for you and hate that you feel alone again. No one needs that feeling because I feel that and I am more active in this group than you. Feel free to email me at ducotedm@... and I will try to help you. We are all fighting a monster and sometimes he wins and sometimes we do. You are in my prayers. You are being remembererd by the group and I feel that

everything when I go to bed even though my name may not have been mentioned that day. This group has enough love to go around. If you want to keep in touch, just right.

Love,

Debbie

ducote55@...

ducotedm@...

wrote: Dear Group,I have to admit, when I joined this group, I was desparate. I thought this group would be a way for me to learn information that is out there on RSD and would also be a group that would be there in my darkest hour. I also, of course, wanted to be there for others too. However, this is not what I found on a whole for this group. I have met 2 people that are wonderful and I keep in touch with them, but I thought that there would be more support than I found. What I found was a click of people who only helped each other. I have tried to join in, answering email that wasn't directed toward me, adding my "two cents" but never recieved any response. I have posted messages and never received a response. I have recommended this group as caring and loving people, but I guess I should have told them that that only applies to

those within the click. I felt that I needed to get this out in the air. I haven't been part of this group for about a month, no one has asked where I was or even noticed that I was gone. I wanted to make sure that you all took notice of this for future group members. Make sure you don't leave them out, you (meaning the whole group) could leave out the wrong person, someone who is really bad off mentally and you could be a catalyst in that persons fate.I pray that all of you will experience pain free or at the least pain less days. I will keep all of you in my prayers as we all seek out the right to have a life, despite our disease.