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Home > Archive > Lupus Support > October 2004 > support group
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| Barbara Dillener 2004-10-04, 2:26 am |
| Just wanted to say how glad I am that there is a group you can talk to
when things get bad. Lupus is hard enough to deal with at times, but
when you don't have someone to talk to its worse.
Barbara
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| Barbara Dillener wrote:
> Just wanted to say how glad I am that there is a group you can talk to
> when things get bad. Lupus is hard enough to deal with at times, but
> when you don't have someone to talk to its worse.
Hi Barbara, You can talk to us anytime.
You'll find sympathetic, caring readers here.
Are things tough for you at the moment?
Many hugs
J
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| Hi Barbara,
This is a good group. It has been very helpful to me. We would be glad to
have you talk to us at any time. Tell us about yourself, if you would like
to share some details.
BJ-Sk. Canada
"Barbara Dillener" <Irish_Cow@webtv.net> wrote in message
news:3800-4160C921-68@storefull-3113.bay.webtv.net...
> Just wanted to say how glad I am that there is a group you can talk to
> when things get bad. Lupus is hard enough to deal with at times, but
> when you don't have someone to talk to its worse.
>
> Barbara
>
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| Stephanie Townsend 2004-10-04, 10:08 pm |
| Welcome Barbara -
I am not sure if you have posted in the past - forgive me if you have.
Please feel free to post any of your struggles, to vent, to whine... or even
just talk about something totally off the topic of Lupus or being sick. I
have found much comfort in the people here. Hope to hear more from you.
Steph
"Barbara Dillener" <Irish_Cow@webtv.net> wrote in message
news:3800-4160C921-68@storefull-3113.bay.webtv.net...
> Just wanted to say how glad I am that there is a group you can talk to
> when things get bad. Lupus is hard enough to deal with at times, but
> when you don't have someone to talk to its worse.
>
> Barbara
>
| |
|
| Barbara,
I agree. I'm new, just diagnosed. With not many family to discuss it
with. They don't understand it, so I printed info out to explain it so
it didn't sound like I was "complaining" or "making excuses". I was so
happy to see this newsgroup as there are no support groups in my
town....much less people who know about or understand my symptoms or
accept me for who I am. I hold onto hope during those tough times, and
praise the days that I feel like I can get out of bed and go for a walk!
So sitting here for hours reading other's comments, stories, etc. is
very therapeutic for me! I hope it is for you too. Susie
Barbara Dillener wrote:
> Just wanted to say how glad I am that there is a group you can talk to
> when things get bad. Lupus is hard enough to deal with at times, but
> when you don't have someone to talk to its worse.
>
> Barbara
>
| |
|
| Susie wrote:
> Barbara,
> I agree. I'm new, just diagnosed. With not many family to discuss it
> with. They don't understand it, so I printed info out to explain it so
> it didn't sound like I was "complaining" or "making excuses". I was so
> happy to see this newsgroup as there are no support groups in my
> town....much less people who know about or understand my symptoms or
> accept me for who I am. I hold onto hope during those tough times, and
> praise the days that I feel like I can get out of bed and go for a walk!
> So sitting here for hours reading other's comments, stories, etc. is
> very therapeutic for me! I hope it is for you too. Susie
Welcome Susie !
Andy has an idea for a card (to be shown to others). He posted about it
earlier.
If you didn't see the post, perhaps he would repost it for you.
Talk to us anytime.
J
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|
| Hi Susie and Barbara, welcome to the group.
Dawn
"J" <espaces@example.net> wrote in message
news:41650216.CA57A3CF@execulink.com...
> Susie wrote:
>
>
> Welcome Susie !
> Andy has an idea for a card (to be shown to others). He posted about it
> earlier.
> If you didn't see the post, perhaps he would repost it for you.
> Talk to us anytime.
> J
>
>
----== Posted via webservertalk.com - Unlimited-Uncensored-Secure Usenet News==----
http://www.webservertalk.com The #1 Newsgroup Service in the World! >100,000 Newsgroups
---= East/West-Coast Server Farms - Total Privacy via Encryption =---
| |
|
| In article <41650216.CA57A3CF@execulink.com>, J <espaces@example.net>
wrote
[
>Welcome Susie !
>Andy has an idea for a card (to be shown to others). He posted about it
>earlier.
>If you didn't see the post, perhaps he would repost it for you.
>Talk to us anytime.
>J
>
>
It was this, which could go on a credit-card sized piece of paper.
LUPUS:
v is for life - treatable, but never curable
v can be fatal
v mimics other illnesses
v can take years to diagnose
v is not infectious
v can attack and destroy almost any organ in the body
v a disease with 1000 faces
v is not just "a women's disease"
v is painful and debilitating
v you look so well - you feel so ill
Systemic Lupus Erythematosus
- hard to say, harder to live with
## Contact info for %your country% ##
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Beverley 2004-10-12, 2:09 am |
| Okay so how do you pronounce "Erythematosus" ?
Why am I asking someone across the pond??? LOL
Bev
"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:aT05Z1KM0taBFw9G@kitzbuhel.demon.co.uk...
> In article <41650216.CA57A3CF@execulink.com>, J <espaces@example.net>
> wrote
> [
> It was this, which could go on a credit-card sized piece of paper.
>
>
> LUPUS:
>
> v is for life - treatable, but never curable
> v can be fatal
> v mimics other illnesses
> v can take years to diagnose
> v is not infectious
> v can attack and destroy almost any organ in the body
> v a disease with 1000 faces
> v is not just "a women's disease"
> v is painful and debilitating
> v you look so well - you feel so ill
>
> Systemic Lupus Erythematosus
> - hard to say, harder to live with
>
> ## Contact info for %your country% ##
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
|
| In article <YqIad.6649$Mh7.5961@trnddc04>, Beverley
<beverly.brown28@verizon.net> wrote
>Okay so how do you pronounce "Erythematosus" ?
Carefully 
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Andy wrote:
> IIt was this, which could go on a credit-card sized piece of paper.
>
> LUPUS:
>
> v is for life - treatable, but never curable
> v can be fatal
> v mimics other illnesses
> v can take years to diagnose
> v is not infectious
> v can attack and destroy almost any organ in the body
> v a disease with 1000 faces
> v is not just "a women's disease"
> v is painful and debilitating
> v you look so well - you feel so ill
>
> Systemic Lupus Erythematosus
> - hard to say, harder to live with
>
> ## Contact info for %your country% ##
Thanks Andy,
I'll save it. I thought I did but can't find it.
J
| |
| Shelagh 2004-10-12, 7:11 pm |
| Thanks Andy,
I liked it so much that
I put it on my 'disclosure' webpage
if you don't mind my using it?
hugs, from Shelagh
"> Andy wrote:[vbcol=seagreen]
>
| |
|
| In article <84Vad.724403$gE.211737@pd7tw3no>, Shelagh
<tiderington@shaw.ca> wrote
>Thanks Andy,
>I liked it so much that
>I put it on my 'disclosure' webpage
>if you don't mind my using it?
I'm honoured!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Shelagh 2004-10-12, 7:11 pm |
| TY!
:-)
~Shelagh
"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
> I'm honoured!
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
|
| Shelagh wrote:
> I liked it so much that I put it on my 'disclosure' webpage
Hi Shelagh,
I'd like to thank you for the requested additions to your webpage.
Everytime I went back, there was something new and better.
You're sure fast and efficient.
I did have a look and (however) cannot find "disclosure" webpage.
Is that something private? or if on the Lupus website, where is it,
Please?
Thanks and hugs to Shelagh in BC
J
| |
| Shelagh 2004-10-13, 7:11 pm |
| "J" wrote in message
> Hi Shelagh,
> I'd like to thank you for the requested additions to your webpage.
> Everytime I went back, there was something new and better.
> You're sure fast and efficient.
>
> I did have a look and (however) cannot find "disclosure" webpage.
> Is that something private? or if on the Lupus website, where is it,
> Please?
> Thanks and hugs to Shelagh in BC
> J
J hi, the disclosure link is NOT personal lol, it ison the homepage, the
right frame,
..... there are four links along the bottom row:
'disclosure', 'lupus info', 'related sites' and 'send email'
They are 'rectangles' like the 'homepage button' at the top of the left
frame, the directory.... it is there and it works... i know that the
homepage looks like all pictures but does have the 4 functioning links on
it..lol.
It is no problem at all with updates... any suggestions from anyone are
welcome re my site... I take constructive criticism 'very well' <g> and have
just downloaded a free 'form builder' from 'quask'
that I hope to use to make and then embed a feedback form on a new page
strictly for that reason... anyhow, good luck finding it <smile>
hugs from Shelagh
| |
|
| In article <dzibd.713404$M95.292105@pd7tw1no>, Shelagh
<tiderington@shaw.ca> wrote
[
>J hi, the disclosure link is NOT personal lol, it ison the homepage, the
>right frame,
>.... there are four links along the bottom row:
>'disclosure', 'lupus info', 'related sites' and 'send email'
>They are 'rectangles' like the 'homepage button' at the top of the left
>frame, the directory.... it is there and it works... i know that the
>homepage looks like all pictures but does have the 4 functioning links on
>it..lol.
There may be some people whose browsers or security settings prevent it
working.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Shelagh wrote:
> J hi, the disclosure link is NOT personal lol, it ison the homepage, the
> right frame,
> .... there are four links along the bottom row:
> 'disclosure', 'lupus info', 'related sites' and 'send email'
> They are 'rectangles' like the 'homepage button' at the top of the left
> frame, the directory.... it is there and it works... i know that the
> homepage looks like all pictures but does have the 4 functioning links on
> it..lol.
> It is no problem at all with updates... any suggestions from anyone are
> welcome re my site... I take constructive criticism 'very well' <g> and have
> just downloaded a free 'form builder' from 'quask'
> that I hope to use to make and then embed a feedback form on a new page
> strictly for that reason... anyhow, good luck finding it <smile>
> hugs from Shelagh
Thanks Shelagh, I found it. It's right at the bottom of the main page.
Either I'm so used to looking at the left sidebar or it wasn't there.
Hard to say because sometimes I use one of three browsers and as Andy mentions
some browsers or security settings may prevent seeing it. I tried mucking
around with mine a few months ago, then figured "I don't know the implications
of what I'm doing and/or how do I make all 3 consistent".. LOL. I gave up.
Hugs Shelagh
J
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