Re: Welcome to chronic_pain@onelist.com

[Guest guest]

Hi, I'm Kay. I have a congenital problem, cerebral palsy-like, tho not

official. On top of this, I now have fibromyalgia and CFS, diagnosed after

a viral illness. And I hate it!! It gets really really old, aching all the

rime, and not being able to do what I want to do. I'm on a regime that

addresses symptoms, as there isn't a definitive Rx. Would like to chat

with others, and maybe swap coping strategies.My son is getting married this

weekend, so I won't have time to answer until this crazy thing is over, but

will check in Monday. Thanks Kay :-)

Welcome to chronic_painonelist

>Hello,

>

>Welcome to the list. Please take a moment to review this message.

>

>List Name: chronic_pain Category: Health | Disabilities Description:

>

>Easy Registration URL: http://www.onelist.com/subscribe.cgi/chronic_pain

>For subscription without a Browser simply email chronic_painonelist

with

>subscribe in the subject box.

>

>Chronic Pain: A support resource for adults with problems

>resulting in chronic physical pain and an empahsis on helping

>to cope and 'have a life.' This is a peer-group list open to

>anyone with chronic pain and closed to *all* others.

>Commercial exploiters will be drawn & quartered.

>

> The 'Chronic Pain' list is moderated to the greatest extent

>we can managed with several disabled moderators

>

>We have established a forum for the support needed by others &

>ourselves, Experience has led us to adopt a rule that seem

>harsh, but is meant for preventing negative & abusive episodes

>which have nearly torn the list apart. We can't fix everything,

>nor can we accept everything.

>

>All posts are reviewed for suitability, topicality and other

>things as relative urgency when post volume expands. It is not

>generally meant to be offensive if your post does not appear

>sometimes. If we spot problems for the list, we will try & let you

>know. However, if you are removed from the list, it is for reasons

>that the moderators stand behind.

>

>And since, of this writing, this has not happened for nearly a year,

>please do not obsess about this. Be reassured that our purpose is

>to be constructive with you.

>

>The moderator & list-owner is Turbin, who has faced chronic

> pain for a very long time & is a healthcare pofessional as well. Our

>co-moderators have a great deal of diversity to contribute, even

>wisdom. It is important to understand that this is not a place for

>professional help, but for human understanding. A brief or more lengthy

>introduction is asked from each participant.

>

>The moderator may be contacted directly at chronic_pain@...

>(but PLEASE --do not send list mail or requests here!)

>

>Important Information:

>

>To send email to the list, use the email address chronic_painonelist

>

[Guest guest]

Hi Kay,

I'm very late in getting to my mail. Welcome to our group. I too have Fibro

along with other little (big) goodies. I have found with this group alot of

wonderful support and information. It has also been a great relief to find

others who share in the frustration of living with Chronic Pain.

Welcome to the group Kay.

Kathleen

[Guest guest]

Hi! Glad to hear from you! What kind of gel do you use for dry mouth?

It's a big problem for me, esp. since I started on Flexeril. I've been

using lifesavers, but they pack on the calories, and I sure don't need that.

I also have very dry skin, and my fingers crack in the cuticles, esp. in

winter. I use all sorts of lotions and creams, even udder balm, and the

vaseline and gloves thing at nite, but still have problems. I use a

humidifier, too. Do you, or anyone else, have any ideas? My dr. says I

should see a dermatologist, but I don't think they would know as much as a

fellow sufferer. Good to hear from you!!

Re: Welcome to chronic_painonelist

>From: KAKRAG@...

>

>Hi Kay,

>I'm very late in getting to my mail. Welcome to our group. I too have

Fibro

>along with other little (big) goodies. I have found with this group alot

of

>wonderful support and information. It has also been a great relief to find

>others who share in the frustration of living with Chronic Pain.

>Welcome to the group Kay.

>Kathleen

>

>------------------------------------------------------------------------

>Give back to your community through " Grow to Give. "

>http://www.onelist.com

>See homepage for details.

>------------------------------------------------------------------------

>Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

[Guest guest]

Hi again, Kay,

At 10:14 PM 5/8/99 -0400, you wrote:

>even udder balm

Don't know if this equals or surpasses udder balm, but in a

psychiatric hospital where I was rehab director, we recommended a mixture

of glycerine with a little lemon juice (to taste, literally). -- This was

for mouth/lip dryness. I never tasted glycerine. Don't try this in your

mouth without a tiny taste sample.(It could be awful. Was recommended by

an awful nurse.)

For dry skin, all the things you mentioned seem to lack lanolin.

This is usually necessary to give any reasonable relief.

Ken

[Guest guest]

Hi Reese,

The oral gel I use is called Oral Balance, which you can get at a pharmacy.

I use pure vitamin E oil on cuticles every day, as I have the same problem of

cracking skin around nails. Hope this will help.

Kathleen

[Guest guest]

In a message dated 5/9/99 6:53:05 PM Eastern Daylight Time, hrn@...

writes:

<< No lanolin for me, Ken, I'm allergic to it. >>

Ray:

How do the lotions with aloe Vera work for you?

Carol

(Ray as moderator: Carol, alo vera works just fine, but with all lotions one

should read the contents list before using to make sure it contains nothing you

are allergic to.)

[Guest guest]

No lanolin for me, Ken, I'm allergic to it. Can't even get anywhere

near a wool garment. And you don't want to know what happens when I rub

something on me with lanolin in it! If I need it I'll stick to other

products sans lanolin.

Ray

Re: Welcome to chronic_painonelist

>

>

> Hi again, Kay,

>

> At 10:14 PM 5/8/99 -0400, you wrote:

> >even udder balm

>

> Don't know if this equals or surpasses udder balm, but in a

> psychiatric hospital where I was rehab director, we recommended a

mixture

> of glycerine with a little lemon juice (to taste, literally). -- This

was

> for mouth/lip dryness. I never tasted glycerine. Don't try this in

your

> mouth without a tiny taste sample.(It could be awful. Was recommended

by

> an awful nurse.)

>

> For dry skin, all the things you mentioned seem to lack

lanolin.

> This is usually necessary to give any reasonable relief.

>

> Ken

>

> ----------------------------------------------------------------------

--

> ONElist: Where Star Wars fans unite!

> http://www.onelist.com

> Find your Star Wars list today!

> ----------------------------------------------------------------------

--

> Know someone who could profit from our list? Send our direct sign-up

URL: http://www.onelist.com/subscribe.cgi/chronic_pain, or write us

at: chronic_pain @onelist.com

>

[Guest guest]

Try sugarless mints or hard candy for dry mouth, especially if you have

to do a lot of talking at any particular time. Usually they are placed

in the candy aisle at grocery, but sometimes other places. Ask and you

shall receive.

Ray

Re: Welcome to chronic_painonelist

>

>

> >From: KAKRAG@...

> >

> >Hi Kay,

> >I'm very late in getting to my mail. Welcome to our group. I too

have

> Fibro

> >along with other little (big) goodies. I have found with this group

alot

> of

> >wonderful support and information. It has also been a great relief

to find

> >others who share in the frustration of living with Chronic Pain.

> >Welcome to the group Kay.

> >Kathleen

> >

>

>-----------------------------------------------------------------------

-

> >Give back to your community through " Grow to Give. "

> >http://www.onelist.com

> >See homepage for details.

>

>-----------------------------------------------------------------------

-

> >Know someone who could profit from our list? Send our direct sign-up

URL:

> http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

> chronic_pain @onelist.com

> >

>

>

> ----------------------------------------------------------------------

--

> Star Wars fans are using ONElist to share the fun.

> http://www.onelist.com

> Are you?

>

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--

> Know someone who could profit from our list? Send our direct sign-up

URL: http://www.onelist.com/subscribe.cgi/chronic_pain, or write us

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>

[Guest guest]

In a message dated 5/9/99 5:53:28 PM Eastern Daylight Time, KAKRAG@...

writes:

> The oral gel I use is called Oral Balance, which you can get at a pharmacy.

> I use pure vitamin E oil on cuticles every day, as I have the same problem

> of

> cracking skin around nails. Hope this will help.

Will this also help with fragile nails? You know, easily chipped, split, etc.

Mad.

[Guest guest]

Brach's Lemmon Drops, are the best, Do not waste your money on the stroe

brand, insist on Brach's they will satisfy that need for something sweet, as

well as help the " Desert Mouth as well "

Jeff

jkeith@...

& The Hounds of Hooterville

[Guest guest]

In a message dated 5/10/99 7:44:14 AM Eastern Daylight Time,

MsVVarrior@... writes:

<< with all lotions one should read the contents list before using to make

sure it contains nothing you are allergic to >>

Ray: absolutely. Sorry that was an understood for me; should have been more

clear for others to be wary.

Carol

[Guest guest]

In a message dated 5/10/99 1:01:40 AM Eastern Daylight Time, jkeith@...

writes:

> Brach's Lemon Drops, are the best, Do not waste your money on the store

> brand, insist on Brach's they will satisfy that need for something sweet,

as

> well as help the " Desert Mouth as well "

Are they sugar free?

Mad

[Guest guest]

No Unfortunately NOT sugar free, I think there is a Sugar free hard candy

I'll have to ask my wife, she is a diabetic, and ocasionaly buys them.

I was even looking at Mt Dew my elixer of LIFE. The Carbs, and calories are

unbelievable. considering I drink a 2 liter bottle a day.

Jeff

jkeith@...

& The Hounds of Hooterville

[Guest guest]

Hi Ray,

OK, when the lanolin ship comes in you aren't going to get any.

Happy now?

At 06:05 PM 5/9/99 -0400, you wrote:

>

>

>No lanolin for me, Ken, I'm allergic to it. Can't even get anywhere

>near a wool garment. And you don't want to know what happens when I rub

>something on me with lanolin in it! If I need it I'll stick to other

>products sans lanolin.

>Ray

> Re: Welcome to chronic_painonelist

>

>

> >

> >

> > Hi again, Kay,

> >

> > At 10:14 PM 5/8/99 -0400, you wrote:

> > >even udder balm

> >

> > Don't know if this equals or surpasses udder balm, but in a

> > psychiatric hospital where I was rehab director, we recommended a

>mixture

> > of glycerine with a little lemon juice (to taste, literally). -- This

>was

> > for mouth/lip dryness. I never tasted glycerine. Don't try this in

>your

> > mouth without a tiny taste sample.(It could be awful. Was recommended

>by

> > an awful nurse.)

> >

> > For dry skin, all the things you mentioned seem to lack

>lanolin.

> > This is usually necessary to give any reasonable relief.

> >

> > Ken

> >

> > ----------------------------------------------------------------------

>--

> > ONElist: Where Star Wars fans unite!

> > http://www.onelist.com

> > Find your Star Wars list today!

> > ----------------------------------------------------------------------

>--

> > Know someone who could profit from our list? Send our direct sign-up

>URL: http://www.onelist.com/subscribe.cgi/chronic_pain, or write us

>at: chronic_pain @onelist.com

> >

>

>

>

>------------------------------------------------------------------------

>Star Wars fans are using ONElist to share the fun.

>http://www.onelist.com

>Are you?

>

>------------------------------------------------------------------------

>Know someone who could profit from our list? Send our direct sign-up

>URL: http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

>chronic_pain @onelist.com

[Guest guest]

Carol, I've missed the " obvious " so many times and ended up in trouble,

that the " obvious " must just not be that obvious to me. LOL

Ray.

Re: Welcome to chronic_painonelist

> From: MsVVarrior@...

>

> In a message dated 5/10/99 7:44:14 AM Eastern Daylight Time,

> MsVVarrior@... writes:

>

> << with all lotions one should read the contents list before using to

make

> sure it contains nothing you are allergic to >>

> Ray: absolutely. Sorry that was an understood for me; should have

been more

> clear for others to be wary.

>

> Carol

>

> ----------------------------------------------------------------------

--

>

[Guest guest]

In a message dated 5/10/99 6:21:26 PM Eastern Daylight Time, jkeith@...

writes:

<< I think there is a Sugar free hard candy >>

Jeff:

From experience, don't overdo it on the sugar-free candy. It can cause

severe diarrhea.

And, a belated welcome to the group. Hope you enjoy this " family " and get as

much out of it as I do.

Carol

[Guest guest]

Unless your are allergic to lanolin!

Lois

Re: Welcome to chronic_painonelist

Hi again, Kay,

At 10:14 PM 5/8/99 -0400, you wrote:

>even udder balm

Don't know if this equals or surpasses udder balm, but in a

psychiatric hospital where I was rehab director, we recommended a mixture

of glycerine with a little lemon juice (to taste, literally). -- This was

for mouth/lip dryness. I never tasted glycerine. Don't try this in your

mouth without a tiny taste sample.(It could be awful. Was recommended by

an awful nurse.)

For dry skin, all the things you mentioned seem to lack lanolin.

This is usually necessary to give any reasonable relief.

Ken

------------------------------------------------------------------------

ONElist: Where Star Wars fans unite!

http://www.onelist.com

Find your Star Wars list today!

------------------------------------------------------------------------

Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

[Guest guest]

Carol, you are right. My pharmacist told me the same thing. I'm in

love with the butterscotch flavored ones. Try to limit them to when I'm

talking.

Ray

Re: Welcome to chronic_painonelist

> From: MsVVarrior@...

>

> In a message dated 5/10/99 6:21:26 PM Eastern Daylight Time,

jkeith@...

> writes:

>

> << I think there is a Sugar free hard candy >>

>

> Jeff:

>

> From experience, don't overdo it on the sugar-free candy. It can

cause

> severe diarrhea.

>

> And, a belated welcome to the group. Hope you enjoy this " family " and

get as

> much out of it as I do.

>

> Carol

>

> ----------------------------------------------------------------------

--

> With more than 14 million emails exchanged daily...

> http://www.onelist.com

> ...ONElist IS the place where the world talks!

> ----------------------------------------------------------------------

--

> Know someone who could profit from our list? Send our direct sign-up

URL: http://www.onelist.com/subscribe.cgi/chronic_pain, or write us

at: chronic_pain @onelist.com

[Guest guest]

Jeff:

You are ADDICTED! My son used to be until he developed some huge ulcers! Have

you price stomach meds? Besides, ulcers hurt like hell! Please try to wean

yourself offa

this junk!

Hugs,

Di

Jeff wrote:

>

>

> No Unfortunately NOT sugar free, I think there is a Sugar free hard candy

> I'll have to ask my wife, she is a diabetic, and ocasionaly buys them.

>

> I was even looking at Mt Dew my elixer of LIFE. The Carbs, and calories are

> unbelievable. considering I drink a 2 liter bottle a day.

>

> Jeff

> jkeith@...

> & The Hounds of Hooterville

>

> ------------------------------------------------------------------------

> Looking for a new hobby? Want to make a new friend?

> http://www.onelist.com

> Come join one of the 145,000 email communities at ONElist!

> ------------------------------------------------------------------------

> Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at: chronic_pain

@onelist.com

[Guest guest]

Hi, everyone! I was able to borrow a computer to use while ours is in the

shop, so am now back on the list. I have really missed talking with you

all!

Welcome to chronic_painonelist

> Hello,

>

> Welcome to the list. Please take a moment to review this message.

>

> List Name: chronic_pain Category: Health | Disabilities Description:

>

> Easy Registration URL: http://www.onelist.com/subscribe.cgi/chronic_pain

> For subscription without a Browser simply email chronic_painonelist

with

> subscribe in the subject box.

>

> Chronic Pain: A support resource for adults with problems

> resulting in chronic physical pain and an empahsis on helping

> to cope and 'have a life.' This is a peer-group list open to

> anyone with chronic pain and closed to *all* others.

> Commercial exploiters will be drawn & quartered.

>

> The 'Chronic Pain' list is moderated to the greatest extent

> we can managed with several disabled moderators

>

> We have established a forum for the support needed by others &

> ourselves, Experience has led us to adopt a rule that seem

> harsh, but is meant for preventing negative & abusive episodes

> which have nearly torn the list apart. We can't fix everything,

> nor can we accept everything.

>

> All posts are reviewed for suitability, topicality and other

> things as relative urgency when post volume expands. It is not

> generally meant to be offensive if your post does not appear

> sometimes. If we spot problems for the list, we will try & let you

> know. However, if you are removed from the list, it is for reasons

> that the moderators stand behind.

>

> And since, of this writing, this has not happened for nearly a year,

> please do not obsess about this. Be reassured that our purpose is

> to be constructive with you.

>

> The moderator & list-owner is Turbin, who has faced chronic

> pain for a very long time & is a healthcare pofessional as well. Our

> co-moderators have a great deal of diversity to contribute, even

> wisdom. It is important to understand that this is not a place for

> professional help, but for human understanding. A brief or more lengthy

> introduction is asked from each participant.

>

> The moderator may be contacted directly at chronic_pain@...

> (but PLEASE --do not send list mail or requests here!)

>

> Important Information:

>

> To send email to the list, use the email address chronic_painonelist

>

[Guest guest]

Kay,

It's also nice to have you back!

Ken

At 09:46 PM 6/29/99 -0400, you wrote:

>

>

>Hi, everyone! I was able to borrow a computer to use while ours is in the

>shop, so am now back on the list. I have really missed talking with you

>all!

> Welcome to chronic_painonelist

>

>

> > Hello,

> >

> > Welcome to the list. Please take a moment to review this message.

> >

> > List Name: chronic_pain Category: Health | Disabilities Description:

> >

> > Easy Registration URL: http://www.onelist.com/subscribe.cgi/chronic_pain

> > For subscription without a Browser simply email chronic_painonelist

>with

> > subscribe in the subject box.

> >

> > Chronic Pain: A support resource for adults with problems

> > resulting in chronic physical pain and an empahsis on helping

> > to cope and 'have a life.' This is a peer-group list open to

> > anyone with chronic pain and closed to *all* others.

> > Commercial exploiters will be drawn & quartered.

> >

> > The 'Chronic Pain' list is moderated to the greatest extent

> > we can managed with several disabled moderators

> >

> > We have established a forum for the support needed by others &

> > ourselves, Experience has led us to adopt a rule that seem

> > harsh, but is meant for preventing negative & abusive episodes

> > which have nearly torn the list apart. We can't fix everything,

> > nor can we accept everything.

> >

> > All posts are reviewed for suitability, topicality and other

> > things as relative urgency when post volume expands. It is not

> > generally meant to be offensive if your post does not appear

> > sometimes. If we spot problems for the list, we will try & let you

> > know. However, if you are removed from the list, it is for reasons

> > that the moderators stand behind.

> >

> > And since, of this writing, this has not happened for nearly a year,

> > please do not obsess about this. Be reassured that our purpose is

> > to be constructive with you.

> >

> > The moderator & list-owner is Turbin, who has faced chronic

> > pain for a very long time & is a healthcare pofessional as well. Our

> > co-moderators have a great deal of diversity to contribute, even

> > wisdom. It is important to understand that this is not a place for

> > professional help, but for human understanding. A brief or more lengthy

> > introduction is asked from each participant.

> >

> > The moderator may be contacted directly at chronic_pain@...

> > (but PLEASE --do not send list mail or requests here!)

> >

> > Important Information:

> >

> > To send email to the list, use the email address chronic_painonelist

> >

[Guest guest]

Thank you very much for allowing me to become a member of

chronic_painonelist I have RSD for 4

years and at this time have full blown RSD and it has also hit all my major

organs in my body including my heart. Due to my veins collapsing and can no

longer take a needle I had an implant in Jan 99 called a portacath. I

receive a heparin flush once a month from a registered Nurse who comes into

my home.

I am also on an oxygen concentrator machine at 4 1/2 liters per minute where

the average person with severe emphysema is using 2 liters per minute of

oxygen. I have chronic Asthma & COPD (Chronic Obstructive Pulmonary Disease)

which has been contributed to the RSD also.

Since the lungs have nerves on the back, it constantly squeezes as I

breath and within 2 years of having RSD I am now in my home all day, every

day as the machine is not portable that allows me to breath. I am unable to

breath on my own. When I go to the doctors I am able to have my husband

wheel an oxygen bottle(s) to bring me to the doctor and home. I must walk up

2 flights of steps and down to go to the doctors. I am unable to walk

forward down the steps as my kneecaps have searing pain, so to try to do my

best, I try walking down the steps sideways. I have two

grown children ages 25 & 22yrs old. I also am a grandmother of two beautiful

granddaughters who call me Nanny.

I am looking forward to learning from this group and passing

on what I have learned, including coping skills to get thru the rough times.

Regards, TMW

[Guest guest]

In a message dated 7/31/99 10:09:41 PM Eastern Daylight Time,

Runner7394@... writes:

<< Thank you very much for allowing me to become a member of

chronic_painonelist >>

Welcome to the group, TMW, but not the reasons for becoming a member. I hope

you will find as much comfort, support, and information from the members as I

have. I am so sorry you are having so much difficulty. You will be in my

thoughts and prayers as you battle your illnesses. Please let the group - or

any one of the members - if you need a hand to hold, a hug, a time to vent,

some information, or anything else. This is a terrific group.

{{{and pain-free wishes}}}

Carol

[Guest guest]

In a message dated 7/31/99 10:09:41 PM Eastern Daylight Time,

Runner7394@... writes:

<< Thank you very much for allowing me to become a member of

chronic_painonelist >>

Welcome to the group, TMW, but not the reasons for becoming a member. I hope

you will find as much comfort, support, and information from the members as I

have. I am so sorry you are having so much difficulty. You will be in my

thoughts and prayers as you battle your illnesses. Please let the group - or

any one of the members - if you need a hand to hold, a hug, a time to vent,

some information, or anything else. This is a terrific group.

{{{and pain-free wishes}}}

Carol

[Guest guest]

Carol, Thank you for such a warm welcome and I have already received heart

felt suggestions of who would like me to reach out if I need a friend to hold

my hand or just a shoulder to cry on. I know your group is exactly what I

have been looking for as far as support and love of another. Regards, Theresa

TMW