Re: Comment on Sue's E-mail

[Guest guest]

sorry...i am always mired in dispair. youre right i should not post that stuff

lol

________________________________

From: ph Polchinski <pchoopsfan@...>

Sent: Tue, August 24, 2010 12:22:14 AM

Subject: Comment on Sue's E-mail

 

" there is so much to come to terms with even after we are treated - all

the years

we have lost, the people and experiences we have lost, the years we will

lose

because i am sure our life expectancy is dimished, the stigma of having a

permanent retroviral infection, the HIV drug side effects, the post trauma

disorders....and we cannot even begin to deal with all of these issues

because

we are still in bed, dying while someone out there might know what to

do....is

unfair and upsetting. "

Wow, Sue, so negative!!  I thought the point of these list-serves was to

encourage one another and share helpful information, not to bring each other

down!  Please no pity parties!!  The only thing we have control over is our

minds and our attitudes since we all seem to lack control over improving our

physical health.  Let's not let our mental health deteriorate too!!

> Dear ,

>

> We already KNOW has been on Ampligen.. that's not " news "

> Maybe they added or spiked her dosage with a 2nd drug like the

> HIV " cocktails " or some such thing... she might be part of a trial

> and she may not even know yet what the 2nd drug is...

>

> Please do NOT even mention her Name in the same paragraph

> with Dessin... is nothing if not ethical and WILL tell us

> when she is allowed to, unless the scientists reveal it FIRST.

>

> Can you " choose " to be Happy instead for her and KNOW

> that she WILL share when she is allowed to if the trial works out..

> Mudl-slinging is not constructive or informative, and neither is

> posting the same thing in multiple places...

> KNOWS the WORLD is watching and Listening to

> HER every word........ she MUST be careful when she is privy

> to anything that has not been given the Green Light to be made

> Public yet.. we KNOW " how many " are waiting to tear down WPI.

>

> Please have a little Faith while you are also grieving.....

> Many of us are also in the same situation but we also TRUST .

> " Friends " don't talk like that " about other Friends " on other

> forums....IMHO

>

>

[Guest guest]

Sue -

>

>

> >>>>>sorry...i am always mired in dispair. youre right i should not post

> that stuff

>

please don't apologize (at least to me!), You talk about the reality of

many of our situations

and Joe -

> >>>>>Wow, Sue, so negative!! I thought the point of these list-serves was

> to

> encourage one another and share helpful information, not to bring each

> other

> down! Please no pity parties!! The only thing we have control over is our

>

> minds and our attitudes since we all seem to lack control over improving

> our

> physical health. Let's not let our mental health deteriorate too!!

>

yikes!! you're so negative about Sue's negativity! Just because you

perceive what she said as " negative " doesn't mean it's not all true. What's

wrong with telling it like it is??

Judith

[Guest guest]

{Moderator: Just a gentle reminder that we are a treatment based group and

support issues are not the focus of the forum. Now, having said that, support

type posts or questions are always allowed for new people and for those who are

having suicidal thoughts. Then we as a group can reach out (and have reached

out) to those who need help- most effective back-channel and also by phone.}

Sue

I dont think you should have to apologize on this group, of all places! Our

lives are a constant struggle for everything. To get through a day either

energy wise, spirt wise, money wise. We live surrounded by doctors, family,

friends, general public who either think we are cracked pots or just dont want

to hear about it. So we suck it up and pretend things are better than they are

so we dont bring people " down " and alienate them even further.

I think on these forums that is one of the main things we should be able to

do....vent, talk about our fears or angers and frustrations. Its not like it

even happens that much, cause we are a pretty strong bunch in many ways. I get

sick of the " happy talkers " (my nickname for them) that think to always make

nice, talk pretty, be positive is the only way for anyone to be..........its

ridiculous. Its creepy and its not how I want to either be with people or

require that they be that way with me.

That whole concept has a dark side which I dont want to get side tracked onto.

I want Sue and anyone who wants or needs to get out some of the heavier opinions

or feelings to know that I am good with you guys laying on the line whenever.

It wont bring me down. I may not have much energy, but I am strong enough to

allow my fellow CFS'rs to express themselves without feeling the need to censor

them

Re: Comment on Sue's E-mail

Sue -

>

>

> >>>>>sorry...i am always mired in dispair. youre right i should not post

> that stuff

>

please don't apologize (at least to me!), You talk about the reality of

many of our situations

and Joe -

> >>>>>Wow, Sue, so negative!! I thought the point of these list-serves was

> to

> encourage one another and share helpful information, not to bring each

> other

> down! Please no pity parties!! The only thing we have control over is our

>

> minds and our attitudes since we all seem to lack control over improving

> our

> physical health. Let's not let our mental health deteriorate too!!

>

yikes!! you're so negative about Sue's negativity! Just because you

perceive what she said as " negative " doesn't mean it's not all true. What's

wrong with telling it like it is??

Judith

[Guest guest]

thanks judith. i will admit...i am having a very hard time right now and this is

the only way i can reach out. i am too sick to travel to see a therapist, too

sick/foggy to be in therapy, and even too sick to talk on the phone. alwyn

catchpole's recent sucide also has me very upset. everytime a fellow CFS

patient, who seemed just as ill as i am, takes her life, it makes me think about

it, too. all i hear from the WPI and everyone else is " hold on " but i am a

vegetable and in constant agony. how can they expect us all to just hold on and

wait years for trials and drugs? i know that with every new disease there have

to be casualties but this limbo thing is too much.

________________________________

From: Dolores <intothemistic@...>

Sent: Tue, August 24, 2010 7:48:45 PM

Subject: Re: Comment on Sue's E-mail

 

{Moderator: Just a gentle reminder that we are a treatment based group and

support issues are not the focus of the forum. Now, having said that, support

type posts or questions are always allowed for new people and for those who are

having suicidal thoughts. Then we as a group can reach out (and have reached

out) to those who need help- most effective back-channel and also by phone.}

Sue

I dont think you should have to apologize on this group, of all places! Our

lives are a constant struggle for everything. To get through a day either energy

wise, spirt wise, money wise. We live surrounded by doctors, family, friends,

general public who either think we are cracked pots or just dont want to hear

about it. So we suck it up and pretend things are better than they are so we

dont bring people " down " and alienate them even further.

I think on these forums that is one of the main things we should be able to

do....vent, talk about our fears or angers and frustrations. Its not like it

even happens that much, cause we are a pretty strong bunch in many ways. I get

sick of the " happy talkers " (my nickname for them) that think to always make

nice, talk pretty, be positive is the only way for anyone to be..........its

ridiculous. Its creepy and its not how I want to either be with people or

require that they be that way with me.

That whole concept has a dark side which I dont want to get side tracked onto.

I want Sue and anyone who wants or needs to get out some of the heavier opinions

or feelings to know that I am good with you guys laying on the line whenever. It

wont bring me down. I may not have much energy, but I am strong enough to allow

my fellow CFS'rs to express themselves without feeling the need to censor them

[Guest guest]

{Moderator: This is the final message in this thread that will be approved.}

Forgive me, Judith and Dolores for encouraging a fellow CFSer to think

positively...Such terrible advice!!!!!!!!!!!!!

From: Sue <suebackagain123@...>

Subject: Re: Comment on Sue's E-mail

Date: Wednesday, August 25, 2010, 12:42 AM

thanks judith. i will admit...i am having a very hard time right now and

this is

the only way i can reach out. i am too sick to travel to see a therapist, too

sick/foggy to be in therapy, and even too sick to talk on the phone. alwyn

catchpole's recent sucide also has me very upset. everytime a fellow CFS

patient, who seemed just as ill as i am, takes her life, it makes me think about

it, too. all i hear from the WPI and everyone else is " hold on " but i am a

vegetable and in constant agony. how can they expect us all to just hold on and

wait years for trials and drugs? i know that with every new disease there have

to be casualties but this limbo thing is too much.