Re: unsubbing-have to leave

February 24, 2002

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Hi Everyone,

I'm fairly new to this list and like all of you am very frustrated with

my health. But I really believe that the only way WE are going to

cure ourselves or at least find a way to lead a somewhat productive life

is staying together and sharing our drug, diet, physical therapy ideas,

sharing what did work and sharing what didn't work. Face it most of

us have been going to doctor upon doctor and spending unbelieveable

amounts of money and still feeling like dog poop. We are the only

ones that are going to help us.

Questions have to be answered, I know many of us feel horrible and its

hard to sit at a computer but its the only way we are going to hit on

something that may help us all. We are going to have bad days and good

days but we have to try share all our knowledge with each other.

Knowledge is power. Face it most of you know far more about these

diseases than most doctors.

Most family and friends will never understand what we go thru, never,

you cannot know what we go thru unless you walk in our shoes.

Somewhere out there , there is sometype of solution to help us get thru

the day, and we have to stick together and just talk , talk , talk about

what we are doing , what we are taking. We are bound to hit on a

solution if we do.

Ok, now kiss and make up..................

Hugs to all,

- melanie@...

To err is human - to forgive canine.

Re: unsubbing-have to leave

> Hi Carolyn.. I totally agree with you... I have been on this list for

> probably over a year now and every single time I ask any type of

question at

> all, I get absolutely not one reply.. I can name at least 20++ times I

have

> asked anything and no feedback or reply what so ever from anyone... it

is

> hard enough living with this dd and having no support system at home

with

> family and friends and I thought this was going to be a somewhat

support

> system to help me thru some of the bad times...

> Terri

>

February 24, 2002

Funny you should mention this....I too feel that their isnt any support. I ask

question and nobody responds. I SUGGEST that if someone has a group then they

need to offer support. If you don't know about a question that someone has then

go ahead and let them know.

Its certainly unfair and hurtfull to be ignored....especially if you have a

disease such as this.

Amy

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Funny you should mention this....I too feel that their isnt any support. I ask

question and nobody responds. I SUGGEST that if someone has a group then they

need to offer support. If you don't know about a question that someone has then

go ahead and let them know.

Its certainly unfair and hurtfull to be ignored....especially if you have a

disease such as this.

Amy

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Funny you should mention this....I too feel that their isnt any support. I ask

question and nobody responds. I SUGGEST that if someone has a group then they

need to offer support. If you don't know about a question that someone has then

go ahead and let them know.

Its certainly unfair and hurtfull to be ignored....especially if you have a

disease such as this.

Amy

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Hi Amy and Carolyn,

i'm sorry your not getting the support you need, excuse the typo's. i just

joined the group and i know that i've learned alot about this disease w/in the

last week. it's sad to say but this group has educated me more than my own

doctor has, just by reading everyones posts. it's important that you both feel

that you're being heard and understood. that will help you understand your

disease and find ways of copeing.i hope youboth can find the anserws to your

questions.

amy evans dawb2005@...> wrote: Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Hi Amy and Carolyn,

i'm sorry your not getting the support you need, excuse the typo's. i just

joined the group and i know that i've learned alot about this disease w/in the

last week. it's sad to say but this group has educated me more than my own

doctor has, just by reading everyones posts. it's important that you both feel

that you're being heard and understood. that will help you understand your

disease and find ways of copeing.i hope youboth can find the anserws to your

questions.

amy evans dawb2005@...> wrote: Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Hi Amy and Carolyn,

i'm sorry your not getting the support you need, excuse the typo's. i just

joined the group and i know that i've learned alot about this disease w/in the

last week. it's sad to say but this group has educated me more than my own

doctor has, just by reading everyones posts. it's important that you both feel

that you're being heard and understood. that will help you understand your

disease and find ways of copeing.i hope youboth can find the anserws to your

questions.

amy evans dawb2005@...> wrote: Wow....My post finally showed up...loll

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 24, 2002

Hi Amy,

I'm so sorry that the response isn't always there when we need it. You made me

really think about the importance

of letting people know that you have taken note of what they share, even if you

don't have any solutions for them.

It's difficult for me to respond alot, I can't seem to get this pain under

control at times. My hands have sharp pains

that travel across the tops of both hands, especially the left. Please don't

leave the Group because of the low response.

All of us care, we're just a bit under it too at times.

Sparky

amy evans dawb2005@...> wrote: Funny you should mention this....I too

feel that their isnt any support. I ask question and nobody responds. I

SUGGEST that if someone has a group then they need to offer support. If you

don't know about a question that someone has then go ahead and let them know.

Its certainly unfair and hurtfull to be ignored....especially if you have a

disease such as this.

Amy

Re: unsubbing-have to leave

Hi Carolyn.. I totally agree with you... I have been on this list for

probably over a year now and every single time I ask any type of question at

all, I get absolutely not one reply.. I can name at least 20++ times I have

asked anything and no feedback or reply what so ever from anyone... it is

hard enough living with this dd and having no support system at home with

family and friends and I thought this was going to be a somewhat support

system to help me thru some of the bad times...

Terri

February 25, 2002

In a message dated 2/24/2002 8:32:39 PM Eastern Standard Time,

dawb2005@... writes:

> Funny you should mention this....I too feel that their isnt any support. I

> ask question and nobody responds. I SUGGEST that if someone has a group

> then they need to offer support. If you don't know about a question that

> someone has then go ahead and let them know.

> Its certainly unfair and hurtfull to be ignored....especially if you have a

> disease such as this.

>

> Amy

>

How about letting them know that you can't help them off-list? I, too, do

not respond to questions that I cannot personally help with or do not have

any personal experience with not just because I don't feel like I can help,

but also because I don't want to clog up the list with a bunch of 'I can't

help yous' or 'I don't knows'. I don't know about the rest of you, but

sometimes I have a hard time reading *all* of the mail that comes from this

(and other) lists and often I will delete messages where the subject line is

something that either does not interest me or something I am not dealing with

or something I simply know nothing about. I think it is a great idea to

continue to support people off-list (i.e., sending someone a post just to let

them know that you have *no* idea what can help, but wish them well on their

journey), but I don't think that this list needs to be clogged up with people

posting that they don't know or can't help.

Just my .02

-Donna

niobioblio@...

February 25, 2002

amy evans wrote:

>

> Funny you should mention this....I too feel that their isnt any support. I

ask question and nobody responds. I SUGGEST that if someone has a group then

they need to offer support. If you don't know about a question that someone has

then go ahead and let them know.

> Its certainly unfair and hurtfull to be ignored....especially if you have a

disease such as this.

>

I'm sorry you've felt hurt and ignored, no one is deliberately doing

this. If no one answers your question that means either they haven't

seen it, they've seen it, but have no answers for you, or they'd like to

answer it, but don't feel up to doing so. It's a nice idea to say if

you don't know about a question tell them so, but if everyone did that,

you'd have a ton of messages cluttering up the list simply saying " sorry

I don't know " . I have severe fatigue at times, given the choice between

typing a " sorry I don't know " or " gosh, I had those same kind of pains,

my doctor said they'd go away on their own. " , I'm going to use my energy

towards the question that I actually can answer. I'd love to be able to

do it all, but I just can't. I've been off line a lot lately in the

past several weeks. I'm sure there are questions there that I wanted to

respond to, but since my email folders just keep getting larger, there

is simply no way, I'm going to make it through all those emails to

respond. So cut us some slack, we may be too sick to read or be able to

answer your questions, our server may have lost your message, or we may

have said " oh Susie usually answers those kinds of questions, I'm tired,

I'll let her do it. " I can't think of anyone, except those who spammed,

or one lady who post in a very in your face manner, that we here on the

list have deliberately ignored. Ask your question again, tell us that

it's the second time. We don't want anyone to go without answers if we

can help it. It may have been taken as a casual question instead of a

" really want to know " question.

Darcy

February 25, 2002