RLS...not really here, YET

[Guest guest]

Dear Group...

I've been gone for 5 weeks and only in minimal email contact. I'm home for

a few days, before returning to help with my mother's care (since her

stroke). I subscribe to the Digest version of the email group, and have

now read through 30 of them. I still have 15 more to go. You think YOU

have too much email...OY!!!!! You guys have been busy, while I've been

gone. When I finally catch up, I'm going to do a report on my 24 hr

each way trip to Singapore, and how I did with my RLS on the flight there

and back. Meanwhile, though, I have a few thoughts to pass on. Just

can't wait.

First thought. Do NOT respond to this letter, with a reply to the group.

Seriously! If you HAVE to write, write to me, personally. Save the rest

of the group from more email for now. Besides, it might be another month

before I read the Digests from this week, so I won't see any responses to

the group for a while, anyhow.

Second thought....maybe we need a short moratorium. It's been like reading

a mystery novel, reading 30 digest letters and trying to guess what will

happen in the next 15. I'm not sure if this group will still exist when I

catch up to April 16!!! Who will unsubscribe? Who will sell something?

Who will yell at whom and who will say, " Kewl! We're one big happy

fighting family! " It's been exciting reading. I've even taken notes. LOL

I'm guessing, though, that nothing much changes in the next 15 Digests

(April 2-15th), so I'm going to make a suggestion. How about a moratorium?

I'm thinking that we need about a one week moratorium from commenting on

this group. Just hold off. Restrain yourself. Send emails on RLS. Send

emails with a little RLS relevant humor. Send emails of description of

your RLS problems or your solutions. Ask questions. But for about a week,

make yourself a goal to NOT comment on others or comment on the group. If

it's worth commenting on, you can write about it on April 24th. It's like

not disturbing a glass of mixed up muddy water. Let things settle for a

week. The water might still be sorta brown, but most of the " dirt " will

settle out. Now, shhhhhhhhhhh! If you don't like the idea, just don't do

it. But don't go writing to the group about how you like or dislike the

idea. I hope there are NO letters that refer to this idea. If you like

it, just do it. If you don't, then don't.

Third thought. There was some reference to Rutin, again. I brought up the

subject about two months ago, when I relayed a letter (recommending Rutin)

to the editor of the Saturday Evening Post. I've tried it...saw no RLS

related results that I'd say were worth reporting, but DID see something

else that I think MIGHT have been Rutin related. Funny thing is.....hold

on...sit down...ready for this? Funny thing is, the information I read on

Rutin, said that it strengthened veins. Yep, VEINS!! I'm tending to think

this is true, because I had the most unusual case of hemorrhoids during the

three weeks when I tried Rutin. Hemorrhoids are swelled veins (as I

understand it), and during those three weeks of taking Rutin, the roids

became very hard and prominent....but NOT painful, as usual. I STILL don't

think this relates to RLS......unless of course, the doctor with the vein

clinics MIGHT be onto something. LOL See that? LOL?

That means " laughing out loud " . I'm laughing folks. Just joking. I'm NOT

commenting on the vein clinics OR the doctor. That's another whole story

and you will NOT get me into that one.....YET. Maybe later.

Fourth thought. There are a LOT of newbies in the group. When I was here

full time, I used to send out a welcome letter to new people. Jodi kept me

informed on who they were. Haven't done that in a month and a half. So,

I'm going to paste a copy of the letter, below. New people are invited to

read and enjoy. Oldies...well..I suggest you go do something more

exciting.

BTW, while in Tucson, I met two more members of this group. We're becoming

a smaller and smaller world all the time. Hope to catch up to the present

day Digests, soon. Take care of yourselves......

Jill

http://www.netzone.com/~gunzel/rls.html

Here's the welcome letter for the new folks:

Welcome to our group of over 250 people from all over the world, suffering

from RLS.

I want to invite you to visit my RLS website (See the URL in #2, below). I

do not take prescription meds. I'm not totally against them...I just fight

the RLS in a different way. You might pick up some helpful tips.

I've had it for 40 years (I'm 46, now)...and have had it in my arms, too,

for maybe 20 of those years. Until the last year, it was just annoying,

but then it got painful and was interfering a LOT with my sleep. That's

when I found the name RLS and joined this group. I've learned SO much. I

hope some of the following tips and bits of information on our group will

help you feel right at home with us, and bring you up to speed with your

research on RLS.

1. GO SEE THE RLS SUPPORT GROUP INFORMATION PAGE: This page is a

must for new members. Do yourself a favor, and at least skim through it

quickly. It's set up like an FAQ page...numbered...easy to find

information that you might need about how the group works. The URL is:

http://www.mLists.net/judson/RLSINTRO.html

2. CHECK OUT OUR GROUP MODERATOR'S WEBSITE:

http://www.mLists.net/judson/rls.html

Jodi has a great RLS page with links to pages dealing with insomnia, RLS, a

great RLS book " Sleep Thief " , medications used for RLS, transcripts of

cyber conferences on RLS and a link to a great article by a doctor working

closely with RLS sufferers. Her best link, in my humble opinion, of

course, is to my own RLS page: http://www.netzone.com/~gunzel/rls.html

Be sure you also check out the links to the RLS Foundation and to the

Southern California RLS Support Group. Both of them are excellent sites.

3. DIGEST vs REGULAR VERSION of the SUPPORT GROUP:

At the group information site, listed in #1 above, you will find a

description of the REGULAR version (where you get each email as it is sent

out) and the DIGEST version (where you get one email, early each morning,

which contains all the correspondence from the past day). Some of us use

the DIGEST version so we get less emails to deal with. Others use it to

help us be less addicted to the computer every minute of the day. It's

important to realize that some people do not see the emails for almost 24

hrs after they are sent. So, there could be ten letters sent, talking

about someone...and they might not get into the conversation until the next

morning when their Digest Version arrives. It's extremely easy to switch

from one version to the other. All that info is on the Information page.

Some people use the Regular Version and then switch to the Digest when they

go out of town, so they don't come home to 150 emails.

4. ACCESSING YOUR ACCOUNT: If you want to change to a different version

of the group (digest or regular), suspend mail temporarily, or UNsubscribe,

you can access your account and do this on your own. Go to this URL:

http://www.onelist.com/isregistered.cgi

Hopefully, you saved your password that was given to you when you

subscribed. Log in with your email address and password. If you go not

have your password, then just put in your email address, click on LOG IN,

and you will have options to figure out your password with a hint, or have

it emailed to you, right away.

(If you hate your password that was given to you, you can change it while

you are on this page.) When you get your password, go to the URL I just

gave and Log In. You will then be on your personal account page. My page

says I am subscribed to 1 list. You might have more. Find the line with

the rlssupport list. Notice there are four columns. The first one is the

name of the list.

The second is titled " Digest " . If you want the Digest version, rather than

getting each email separately...click on the box below the word DIGEST.

The next column says, " No Mail " . If you want to put a temporary stop to

your mail, but NOT get off the list...click on the box below the words NO

MAIL.

When you return, just uncheck the box. If you want to UNsubscribe, then

click on the " unsubscribe " link in the last column.

5. THOUGHTS ON GROUP ETIQUETTE

The info page will also tell you about group etiquette, how to sign your

letters (with name, age, location), topics that are appropriate, etc. etc.

This information will help prevent misunderstandings and promote an

atmosphere of sharing and tolerance. It's important to remember that group

members may range in age from ten years old to 90+....and they may be

Americans, Dutch, Australian, Canadian, etc. We all type in English, but

some of us are translating from other native languages. Language

differences can easily cause misunderstandings...but we usually clear them

up quickly. We also have people that are JUST dealing with RLS (some

having mild cases and some dealing with very severe cases)...while others

are battling other problems like arthritis, fibromylagia, PLMD,

depression,etc. etc. MOST of us are probably sleep deprived and mad about

this whole thing. Add this to all the normal problems people face, and the

fact that we can't see facial expressions or hear tone of voice, and you

can see the potential for problems. We also have differences in our

knowledge of computers. Some of us are lucky to get the emails out, while

others know the finer points of how to get around in cyberspace.

Therefore, we try to follow some basic rules that are laid out on the group

information page and we do our best to practice tolerance and

understanding, seasoned with some very strange senses of humor. *smirk*

6. THE PHOTO ALBUM: The group photo album was put together in the Fall of

1998, by Jodi, as a private group page where we could start to see what

some of us looked like. Participation in the album is totally optional.

We only give

the URL to group members...hoping to not advertise ourselves to all of

cyberspace. If you'd like your photo on the page, please send a jpg or gif

file of your photo to Jodi. If that was " greek " to you....jpg/gif....or if

you don't have a scanner to scan your own photo, contact Jodi, or myself,

or someone you know with a scanner, and we'll arrange for you to send us

your photo. We'll scan it and get it into the album. The website for the

album is: http://www.mLists.net/judson/CRLSG.html When you get there,

just click on the little ball to the left of each name.

Warning!!!! Beware of 's photo. We have some VERY strange people in

this group...and like I said, before, we come from ALL kinds of places.

7. READING MATERIAL

It's highly recommended that you obtain a copy of Virginia 's book

" Sleep Thief " . It's full of great research information and personal

experiences and tips on dealing with RLS. There's a link to a website

about it, on Jodi's page.

Also, be sure to join the RLS Foundation and pay the $25 for the quarterly

newsletter " Nightwalkers " . If there is anything new in RLS research,

you'll read about it in this newsletter.

8. ABBREVIATIONS, EMOTICONS, ACRONYMS

BTW...for those who are new to emails and cybertalk....you might be

confused by some of the abbreviations we use...like BTW. The most common

are:

BTW = by the way

LOL = laughing out loud

IMHO = in my humble opinion

TTYL = talk to you later

Also, we use " emoticons " as a way of showing tone of voice, facial

expressions, or intent.

smile

frown

sticking my tongue out at you...teasing

{{{{{O}}}}}} chill pill, to be taken when you feel tense and angry

*smirk* When something is put between * * it means it's a gesture or

expression you'd see if you were really looking at the person.

SO....if you are joking or teasing, be sure to add that little emoticon, so

people don't take you seriously. And if you think a comment in a letter

sounds mean or aggressive, look to see if there's a at the end. If so,

the person was saying it all in a nice way.

Hope this helps. When in doubt, ASK. You'll get more answers than you

probably wanted.

Jill, 46

Payson, AZ

http://www.netzone.com/~gunzel/rls.html