Re: Flushing appeal (was: Re-bound effect?)

May 7, 2002

I seriously cannot believe the turn this thread has taken.

I don't see why ANYONE is the group ought to censure what he or she

says about their own condition, experience, or what have you. It is

important to ALL of us, if we are all equal members of this group, to

hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

MEMBERS and THEY CHOSE TO SHARE IT.

I don't see why any of us should EVER be made to feel that we have to

JUSTIFY posting a message. Threads often go off on tangents, with

human beings reaching out to others for support, encouragement, a

kind word, a bit of information. THANK GOODNESS FOR THAT!

I'm just too stunned to think straight right now.

One thing I really want to say is, as the person who asked the

orignal question here, Jen, if you're still there, your words did not

make ME uncomfortable, I didn't feel like any feelings *I* had were

invalidated, I don't feel like *I* was " confronted " nor do *I*

subscribe to the notion that anyone can " trump " anyone else's

suffering.

And I guess I ought to emphasize that what I am SHARING are MY

FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

I trying to.

I'm not telling or even suggesting to anyone else how they should

feel or what they should think or how they should act or what they

should or shouldn't write.

Maybe I'm missing something here. I know this is a moderated

group...I guess I should go back and find out what that really means!

Aargh!

>

> Jen, I appreciate your personal difficulties and perspective.

Here's

> an analogy that may help explain my comments: imagine a group of

> breast cancer patients sharing their experiences with Stage 1

cancer

> being suddenly confronted with someone at Stage 4, describing what

> she's going through. Can you see how hard it would be to resume

> discussion without the less ill people appearing insensitive or

> overly dramatic? It doesn't matter whether the person with Stage 4

> cancer can empathize with those at Stage 1. By simply describing

her

> suffering in this context, the confrontation has already taken

place,

> her person's suffering trumps everyone else's suffering.

>

> But the analogy falls apart in one important respect: unlike a

Stage

> 4 breast cancer patient whose input can be of value to encourage

> compliance among Stage 1 patients, your description falls well

> outside the natural progression of rosacea. It's not the same

> situation here since even untreated, rosaceans should not worry

that

> they are likely to ever experience what unfortunately you and

others

> do. Untreated rosacea may result in continued flushing,

inflammation

> and edema, with progression to telangectasias and phymas and eye

> damage over the years and decades -- but not the kind of flushing

and

> facial pain you describe. So I don't agree in this context it

> was " important to acknowlege the significance of flushing in

rosacea

> progression and vascular disease, " at least the extreme description

> you gave.

>

> But what you're going through is deserving of attention in its own

> right. If you're comfortable sharing your care publicly, what

> medications do you find most helpful for controlling your flushing

> and pain? What kind of phototherapy did you undergo, and how

helpful

> was it? Is your condition stable at the present time, improving, or

> progressive?

>

> Marjorie

>

> Marjorie Lazoff, MD

>

> > Hi Marjorie,

> >

> > It was not my intention to invalidate anyone's feelings. I am

very

> aware

> > that blushing is often considered an attractive trait, and in

fact

> in

> > pre-rosacea days I took it as a compliment when anyone commented

on

> my

> > healthy, glowing complexion. I'm sure I still would if it were

to

> happen

> > today I realize that the discussion of flushing/blushing was

> probably

> > intended to focus on less severe cases of flushing and blushing,

> but as Jan

> > had asked in the original post what was so bad about flushing, I

> feel it

> > important to also acknowledge the significance of flushing in

> rosacea

> > progression and vascular disease, the fact that at times it can

> indeed

> > become extremely physically painful, and that there are many

people

> out

> > there struggling to get through each day and night with this

> horrible

> > physical pain that completely overshadows the cosmetics of the

> condition.

> > That is not to diminish in any way the emotional impact of the

> cosmetic

> > aspects of rosacea - I know that pain too.

> >

> > Wishing everyone relief,

> > Jen

> >

> > >Jen, I'm sorry to hear things are difficult for you. Of course a

> > >discussion regarding the more commonplace blushing/flushing

> > >experiences of rosaceans obviously does not include extreme

> examples

> > >such as you describe.

> > >

> > >If someone says they find blushing sexy, or doesn't find facial

> > >flushing a big deal from a social perspective, why invalidate

their

> > >feelings just because you believe it doesn't apply to you, or

rule

> > >out that others might be perceived more favorably than you

imagine?

> > >

May 7, 2002

I seriously cannot believe the turn this thread has taken.

I don't see why ANYONE is the group ought to censure what he or she

says about their own condition, experience, or what have you. It is

important to ALL of us, if we are all equal members of this group, to

hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

MEMBERS and THEY CHOSE TO SHARE IT.

I don't see why any of us should EVER be made to feel that we have to

JUSTIFY posting a message. Threads often go off on tangents, with

human beings reaching out to others for support, encouragement, a

kind word, a bit of information. THANK GOODNESS FOR THAT!

I'm just too stunned to think straight right now.

One thing I really want to say is, as the person who asked the

orignal question here, Jen, if you're still there, your words did not

make ME uncomfortable, I didn't feel like any feelings *I* had were

invalidated, I don't feel like *I* was " confronted " nor do *I*

subscribe to the notion that anyone can " trump " anyone else's

suffering.

And I guess I ought to emphasize that what I am SHARING are MY

FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

I trying to.

I'm not telling or even suggesting to anyone else how they should

feel or what they should think or how they should act or what they

should or shouldn't write.

Maybe I'm missing something here. I know this is a moderated

group...I guess I should go back and find out what that really means!

Aargh!

>

> Jen, I appreciate your personal difficulties and perspective.

Here's

> an analogy that may help explain my comments: imagine a group of

> breast cancer patients sharing their experiences with Stage 1

cancer

> being suddenly confronted with someone at Stage 4, describing what

> she's going through. Can you see how hard it would be to resume

> discussion without the less ill people appearing insensitive or

> overly dramatic? It doesn't matter whether the person with Stage 4

> cancer can empathize with those at Stage 1. By simply describing

her

> suffering in this context, the confrontation has already taken

place,

> her person's suffering trumps everyone else's suffering.

>

> But the analogy falls apart in one important respect: unlike a

Stage

> 4 breast cancer patient whose input can be of value to encourage

> compliance among Stage 1 patients, your description falls well

> outside the natural progression of rosacea. It's not the same

> situation here since even untreated, rosaceans should not worry

that

> they are likely to ever experience what unfortunately you and

others

> do. Untreated rosacea may result in continued flushing,

inflammation

> and edema, with progression to telangectasias and phymas and eye

> damage over the years and decades -- but not the kind of flushing

and

> facial pain you describe. So I don't agree in this context it

> was " important to acknowlege the significance of flushing in

rosacea

> progression and vascular disease, " at least the extreme description

> you gave.

>

> But what you're going through is deserving of attention in its own

> right. If you're comfortable sharing your care publicly, what

> medications do you find most helpful for controlling your flushing

> and pain? What kind of phototherapy did you undergo, and how

helpful

> was it? Is your condition stable at the present time, improving, or

> progressive?

>

> Marjorie

>

> Marjorie Lazoff, MD

>

> > Hi Marjorie,

> >

> > It was not my intention to invalidate anyone's feelings. I am

very

> aware

> > that blushing is often considered an attractive trait, and in

fact

> in

> > pre-rosacea days I took it as a compliment when anyone commented

on

> my

> > healthy, glowing complexion. I'm sure I still would if it were

to

> happen

> > today I realize that the discussion of flushing/blushing was

> probably

> > intended to focus on less severe cases of flushing and blushing,

> but as Jan

> > had asked in the original post what was so bad about flushing, I

> feel it

> > important to also acknowledge the significance of flushing in

> rosacea

> > progression and vascular disease, the fact that at times it can

> indeed

> > become extremely physically painful, and that there are many

people

> out

> > there struggling to get through each day and night with this

> horrible

> > physical pain that completely overshadows the cosmetics of the

> condition.

> > That is not to diminish in any way the emotional impact of the

> cosmetic

> > aspects of rosacea - I know that pain too.

> >

> > Wishing everyone relief,

> > Jen

> >

> > >Jen, I'm sorry to hear things are difficult for you. Of course a

> > >discussion regarding the more commonplace blushing/flushing

> > >experiences of rosaceans obviously does not include extreme

> examples

> > >such as you describe.

> > >

> > >If someone says they find blushing sexy, or doesn't find facial

> > >flushing a big deal from a social perspective, why invalidate

their

> > >feelings just because you believe it doesn't apply to you, or

rule

> > >out that others might be perceived more favorably than you

imagine?

> > >

May 7, 2002

I seriously cannot believe the turn this thread has taken.

I don't see why ANYONE is the group ought to censure what he or she

says about their own condition, experience, or what have you. It is

important to ALL of us, if we are all equal members of this group, to

hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

MEMBERS and THEY CHOSE TO SHARE IT.

I don't see why any of us should EVER be made to feel that we have to

JUSTIFY posting a message. Threads often go off on tangents, with

human beings reaching out to others for support, encouragement, a

kind word, a bit of information. THANK GOODNESS FOR THAT!

I'm just too stunned to think straight right now.

One thing I really want to say is, as the person who asked the

orignal question here, Jen, if you're still there, your words did not

make ME uncomfortable, I didn't feel like any feelings *I* had were

invalidated, I don't feel like *I* was " confronted " nor do *I*

subscribe to the notion that anyone can " trump " anyone else's

suffering.

And I guess I ought to emphasize that what I am SHARING are MY

FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

I trying to.

I'm not telling or even suggesting to anyone else how they should

feel or what they should think or how they should act or what they

should or shouldn't write.

Maybe I'm missing something here. I know this is a moderated

group...I guess I should go back and find out what that really means!

Aargh!

>

> Jen, I appreciate your personal difficulties and perspective.

Here's

> an analogy that may help explain my comments: imagine a group of

> breast cancer patients sharing their experiences with Stage 1

cancer

> being suddenly confronted with someone at Stage 4, describing what

> she's going through. Can you see how hard it would be to resume

> discussion without the less ill people appearing insensitive or

> overly dramatic? It doesn't matter whether the person with Stage 4

> cancer can empathize with those at Stage 1. By simply describing

her

> suffering in this context, the confrontation has already taken

place,

> her person's suffering trumps everyone else's suffering.

>

> But the analogy falls apart in one important respect: unlike a

Stage

> 4 breast cancer patient whose input can be of value to encourage

> compliance among Stage 1 patients, your description falls well

> outside the natural progression of rosacea. It's not the same

> situation here since even untreated, rosaceans should not worry

that

> they are likely to ever experience what unfortunately you and

others

> do. Untreated rosacea may result in continued flushing,

inflammation

> and edema, with progression to telangectasias and phymas and eye

> damage over the years and decades -- but not the kind of flushing

and

> facial pain you describe. So I don't agree in this context it

> was " important to acknowlege the significance of flushing in

rosacea

> progression and vascular disease, " at least the extreme description

> you gave.

>

> But what you're going through is deserving of attention in its own

> right. If you're comfortable sharing your care publicly, what

> medications do you find most helpful for controlling your flushing

> and pain? What kind of phototherapy did you undergo, and how

helpful

> was it? Is your condition stable at the present time, improving, or

> progressive?

>

> Marjorie

>

> Marjorie Lazoff, MD

>

> > Hi Marjorie,

> >

> > It was not my intention to invalidate anyone's feelings. I am

very

> aware

> > that blushing is often considered an attractive trait, and in

fact

> in

> > pre-rosacea days I took it as a compliment when anyone commented

on

> my

> > healthy, glowing complexion. I'm sure I still would if it were

to

> happen

> > today I realize that the discussion of flushing/blushing was

> probably

> > intended to focus on less severe cases of flushing and blushing,

> but as Jan

> > had asked in the original post what was so bad about flushing, I

> feel it

> > important to also acknowledge the significance of flushing in

> rosacea

> > progression and vascular disease, the fact that at times it can

> indeed

> > become extremely physically painful, and that there are many

people

> out

> > there struggling to get through each day and night with this

> horrible

> > physical pain that completely overshadows the cosmetics of the

> condition.

> > That is not to diminish in any way the emotional impact of the

> cosmetic

> > aspects of rosacea - I know that pain too.

> >

> > Wishing everyone relief,

> > Jen

> >

> > >Jen, I'm sorry to hear things are difficult for you. Of course a

> > >discussion regarding the more commonplace blushing/flushing

> > >experiences of rosaceans obviously does not include extreme

> examples

> > >such as you describe.

> > >

> > >If someone says they find blushing sexy, or doesn't find facial

> > >flushing a big deal from a social perspective, why invalidate

their

> > >feelings just because you believe it doesn't apply to you, or

rule

> > >out that others might be perceived more favorably than you

imagine?

> > >

May 8, 2002

Jan, you have voiced my sentiments almost exactly here. Thank you and Adam

for taking the time to respond to that post. I read Marjorie's response to

Jen's post before I went to bed last night and woke up thinking about it

this morning. I don't think I could say it any better than you did here Jan,

but I would add that Marjorie's post also brought to mind the strong words

censure and justify and also inhibition; NONE of which are in accord with

the purpose of this support group.

This is a SUPPORT group meant to include a broad spectrum of ideas and

feelings NOT a course in the narrow confines of logic. Implying that one

should have to censure one's thoughts, that one must justify one's thoughts

to another poster, causing that poster (or any other) to feel thereby

inhibited about posting in the future because their thoughts don't fit in

with someone's narrow ideas of what a thread " should " be is really quite out

of line.

on 5/8/02 3:53 AM, barefootjan at barefootjan@... wrote:

> I seriously cannot believe the turn this thread has taken.

>

> I don't see why ANYONE is the group ought to censure what he or she

> says about their own condition, experience, or what have you. It is

> important to ALL of us, if we are all equal members of this group, to

> hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

> MEMBERS and THEY CHOSE TO SHARE IT.

>

> I don't see why any of us should EVER be made to feel that we have to

> JUSTIFY posting a message. Threads often go off on tangents, with

> human beings reaching out to others for support, encouragement, a

> kind word, a bit of information. THANK GOODNESS FOR THAT!

>

> I'm just too stunned to think straight right now.

>

> One thing I really want to say is, as the person who asked the

> orignal question here, Jen, if you're still there, your words did not

> make ME uncomfortable, I didn't feel like any feelings *I* had were

> invalidated, I don't feel like *I* was " confronted " nor do *I*

> subscribe to the notion that anyone can " trump " anyone else's

> suffering.

>

> And I guess I ought to emphasize that what I am SHARING are MY

> FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

> I trying to.

>

> I'm not telling or even suggesting to anyone else how they should

> feel or what they should think or how they should act or what they

> should or shouldn't write.

>

> Maybe I'm missing something here. I know this is a moderated

> group...I guess I should go back and find out what that really means!

>

> Aargh!

>

>>

>> Jen, I appreciate your personal difficulties and perspective.

> Here's

>> an analogy that may help explain my comments: imagine a group of

>> breast cancer patients sharing their experiences with Stage 1

> cancer

>> being suddenly confronted with someone at Stage 4, describing what

>> she's going through. Can you see how hard it would be to resume

>> discussion without the less ill people appearing insensitive or

>> overly dramatic? It doesn't matter whether the person with Stage 4

>> cancer can empathize with those at Stage 1. By simply describing

> her

>> suffering in this context, the confrontation has already taken

> place,

>> her person's suffering trumps everyone else's suffering.

>>

>> But the analogy falls apart in one important respect: unlike a

> Stage

>> 4 breast cancer patient whose input can be of value to encourage

>> compliance among Stage 1 patients, your description falls well

>> outside the natural progression of rosacea. It's not the same

>> situation here since even untreated, rosaceans should not worry

> that

>> they are likely to ever experience what unfortunately you and

> others

>> do. Untreated rosacea may result in continued flushing,

> inflammation

>> and edema, with progression to telangectasias and phymas and eye

>> damage over the years and decades -- but not the kind of flushing

> and

>> facial pain you describe. So I don't agree in this context it

>> was " important to acknowlege the significance of flushing in

> rosacea

>> progression and vascular disease, " at least the extreme description

>> you gave.

>>

>> But what you're going through is deserving of attention in its own

>> right. If you're comfortable sharing your care publicly, what

>> medications do you find most helpful for controlling your flushing

>> and pain? What kind of phototherapy did you undergo, and how

> helpful

>> was it? Is your condition stable at the present time, improving, or

>> progressive?

>>

>> Marjorie

>>

>> Marjorie Lazoff, MD

>>

>>> Hi Marjorie,

>>>

>>> It was not my intention to invalidate anyone's feelings. I am

> very

>> aware

>>> that blushing is often considered an attractive trait, and in

> fact

>> in

>>> pre-rosacea days I took it as a compliment when anyone commented

> on

>> my

>>> healthy, glowing complexion. I'm sure I still would if it were

> to

>> happen

>>> today I realize that the discussion of flushing/blushing was

>> probably

>>> intended to focus on less severe cases of flushing and blushing,

>> but as Jan

>>> had asked in the original post what was so bad about flushing, I

>> feel it

>>> important to also acknowledge the significance of flushing in

>> rosacea

>>> progression and vascular disease, the fact that at times it can

>> indeed

>>> become extremely physically painful, and that there are many

> people

>> out

>>> there struggling to get through each day and night with this

>> horrible

>>> physical pain that completely overshadows the cosmetics of the

>> condition.

>>> That is not to diminish in any way the emotional impact of the

>> cosmetic

>>> aspects of rosacea - I know that pain too.

>>>

>>> Wishing everyone relief,

>>> Jen

>>>

>>>> Jen, I'm sorry to hear things are difficult for you. Of course a

>>>> discussion regarding the more commonplace blushing/flushing

>>>> experiences of rosaceans obviously does not include extreme

>> examples

>>>> such as you describe.

>>>>

>>>> If someone says they find blushing sexy, or doesn't find facial

>>>> flushing a big deal from a social perspective, why invalidate

> their

>>>> feelings just because you believe it doesn't apply to you, or

> rule

>>>> out that others might be perceived more favorably than you

> imagine?

>>>>

>

> --

> Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you don't give

> a meaningful subject or trim your reply text. You must change the subject when

> replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to rosacea-support-unsubscribe

>

May 8, 2002

Jan, you have voiced my sentiments almost exactly here. Thank you and Adam

for taking the time to respond to that post. I read Marjorie's response to

Jen's post before I went to bed last night and woke up thinking about it

this morning. I don't think I could say it any better than you did here Jan,

but I would add that Marjorie's post also brought to mind the strong words

censure and justify and also inhibition; NONE of which are in accord with

the purpose of this support group.

This is a SUPPORT group meant to include a broad spectrum of ideas and

feelings NOT a course in the narrow confines of logic. Implying that one

should have to censure one's thoughts, that one must justify one's thoughts

to another poster, causing that poster (or any other) to feel thereby

inhibited about posting in the future because their thoughts don't fit in

with someone's narrow ideas of what a thread " should " be is really quite out

of line.

on 5/8/02 3:53 AM, barefootjan at barefootjan@... wrote:

> I seriously cannot believe the turn this thread has taken.

>

> I don't see why ANYONE is the group ought to censure what he or she

> says about their own condition, experience, or what have you. It is

> important to ALL of us, if we are all equal members of this group, to

> hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

> MEMBERS and THEY CHOSE TO SHARE IT.

>

> I don't see why any of us should EVER be made to feel that we have to

> JUSTIFY posting a message. Threads often go off on tangents, with

> human beings reaching out to others for support, encouragement, a

> kind word, a bit of information. THANK GOODNESS FOR THAT!

>

> I'm just too stunned to think straight right now.

>

> One thing I really want to say is, as the person who asked the

> orignal question here, Jen, if you're still there, your words did not

> make ME uncomfortable, I didn't feel like any feelings *I* had were

> invalidated, I don't feel like *I* was " confronted " nor do *I*

> subscribe to the notion that anyone can " trump " anyone else's

> suffering.

>

> And I guess I ought to emphasize that what I am SHARING are MY

> FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

> I trying to.

>

> I'm not telling or even suggesting to anyone else how they should

> feel or what they should think or how they should act or what they

> should or shouldn't write.

>

> Maybe I'm missing something here. I know this is a moderated

> group...I guess I should go back and find out what that really means!

>

> Aargh!

>

>>

>> Jen, I appreciate your personal difficulties and perspective.

> Here's

>> an analogy that may help explain my comments: imagine a group of

>> breast cancer patients sharing their experiences with Stage 1

> cancer

>> being suddenly confronted with someone at Stage 4, describing what

>> she's going through. Can you see how hard it would be to resume

>> discussion without the less ill people appearing insensitive or

>> overly dramatic? It doesn't matter whether the person with Stage 4

>> cancer can empathize with those at Stage 1. By simply describing

> her

>> suffering in this context, the confrontation has already taken

> place,

>> her person's suffering trumps everyone else's suffering.

>>

>> But the analogy falls apart in one important respect: unlike a

> Stage

>> 4 breast cancer patient whose input can be of value to encourage

>> compliance among Stage 1 patients, your description falls well

>> outside the natural progression of rosacea. It's not the same

>> situation here since even untreated, rosaceans should not worry

> that

>> they are likely to ever experience what unfortunately you and

> others

>> do. Untreated rosacea may result in continued flushing,

> inflammation

>> and edema, with progression to telangectasias and phymas and eye

>> damage over the years and decades -- but not the kind of flushing

> and

>> facial pain you describe. So I don't agree in this context it

>> was " important to acknowlege the significance of flushing in

> rosacea

>> progression and vascular disease, " at least the extreme description

>> you gave.

>>

>> But what you're going through is deserving of attention in its own

>> right. If you're comfortable sharing your care publicly, what

>> medications do you find most helpful for controlling your flushing

>> and pain? What kind of phototherapy did you undergo, and how

> helpful

>> was it? Is your condition stable at the present time, improving, or

>> progressive?

>>

>> Marjorie

>>

>> Marjorie Lazoff, MD

>>

>>> Hi Marjorie,

>>>

>>> It was not my intention to invalidate anyone's feelings. I am

> very

>> aware

>>> that blushing is often considered an attractive trait, and in

> fact

>> in

>>> pre-rosacea days I took it as a compliment when anyone commented

> on

>> my

>>> healthy, glowing complexion. I'm sure I still would if it were

> to

>> happen

>>> today I realize that the discussion of flushing/blushing was

>> probably

>>> intended to focus on less severe cases of flushing and blushing,

>> but as Jan

>>> had asked in the original post what was so bad about flushing, I

>> feel it

>>> important to also acknowledge the significance of flushing in

>> rosacea

>>> progression and vascular disease, the fact that at times it can

>> indeed

>>> become extremely physically painful, and that there are many

> people

>> out

>>> there struggling to get through each day and night with this

>> horrible

>>> physical pain that completely overshadows the cosmetics of the

>> condition.

>>> That is not to diminish in any way the emotional impact of the

>> cosmetic

>>> aspects of rosacea - I know that pain too.

>>>

>>> Wishing everyone relief,

>>> Jen

>>>

>>>> Jen, I'm sorry to hear things are difficult for you. Of course a

>>>> discussion regarding the more commonplace blushing/flushing

>>>> experiences of rosaceans obviously does not include extreme

>> examples

>>>> such as you describe.

>>>>

>>>> If someone says they find blushing sexy, or doesn't find facial

>>>> flushing a big deal from a social perspective, why invalidate

> their

>>>> feelings just because you believe it doesn't apply to you, or

> rule

>>>> out that others might be perceived more favorably than you

> imagine?

>>>>

>

> --

> Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you don't give

> a meaningful subject or trim your reply text. You must change the subject when

> replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to rosacea-support-unsubscribe

>

May 8, 2002

Jan, you have voiced my sentiments almost exactly here. Thank you and Adam

for taking the time to respond to that post. I read Marjorie's response to

Jen's post before I went to bed last night and woke up thinking about it

this morning. I don't think I could say it any better than you did here Jan,

but I would add that Marjorie's post also brought to mind the strong words

censure and justify and also inhibition; NONE of which are in accord with

the purpose of this support group.

This is a SUPPORT group meant to include a broad spectrum of ideas and

feelings NOT a course in the narrow confines of logic. Implying that one

should have to censure one's thoughts, that one must justify one's thoughts

to another poster, causing that poster (or any other) to feel thereby

inhibited about posting in the future because their thoughts don't fit in

with someone's narrow ideas of what a thread " should " be is really quite out

of line.

on 5/8/02 3:53 AM, barefootjan at barefootjan@... wrote:

> I seriously cannot believe the turn this thread has taken.

>

> I don't see why ANYONE is the group ought to censure what he or she

> says about their own condition, experience, or what have you. It is

> important to ALL of us, if we are all equal members of this group, to

> hear what our fellow members want to share. SIMPLY BECAUSE THEY ARE

> MEMBERS and THEY CHOSE TO SHARE IT.

>

> I don't see why any of us should EVER be made to feel that we have to

> JUSTIFY posting a message. Threads often go off on tangents, with

> human beings reaching out to others for support, encouragement, a

> kind word, a bit of information. THANK GOODNESS FOR THAT!

>

> I'm just too stunned to think straight right now.

>

> One thing I really want to say is, as the person who asked the

> orignal question here, Jen, if you're still there, your words did not

> make ME uncomfortable, I didn't feel like any feelings *I* had were

> invalidated, I don't feel like *I* was " confronted " nor do *I*

> subscribe to the notion that anyone can " trump " anyone else's

> suffering.

>

> And I guess I ought to emphasize that what I am SHARING are MY

> FEELINGS AND MY FEELINGS ALONE. I don't speak for anyone else nor am

> I trying to.

>

> I'm not telling or even suggesting to anyone else how they should

> feel or what they should think or how they should act or what they

> should or shouldn't write.

>

> Maybe I'm missing something here. I know this is a moderated

> group...I guess I should go back and find out what that really means!

>

> Aargh!

>

>>

>> Jen, I appreciate your personal difficulties and perspective.

> Here's

>> an analogy that may help explain my comments: imagine a group of

>> breast cancer patients sharing their experiences with Stage 1

> cancer

>> being suddenly confronted with someone at Stage 4, describing what

>> she's going through. Can you see how hard it would be to resume

>> discussion without the less ill people appearing insensitive or

>> overly dramatic? It doesn't matter whether the person with Stage 4

>> cancer can empathize with those at Stage 1. By simply describing

> her

>> suffering in this context, the confrontation has already taken

> place,

>> her person's suffering trumps everyone else's suffering.

>>

>> But the analogy falls apart in one important respect: unlike a

> Stage

>> 4 breast cancer patient whose input can be of value to encourage

>> compliance among Stage 1 patients, your description falls well

>> outside the natural progression of rosacea. It's not the same

>> situation here since even untreated, rosaceans should not worry

> that

>> they are likely to ever experience what unfortunately you and

> others

>> do. Untreated rosacea may result in continued flushing,

> inflammation

>> and edema, with progression to telangectasias and phymas and eye

>> damage over the years and decades -- but not the kind of flushing

> and

>> facial pain you describe. So I don't agree in this context it

>> was " important to acknowlege the significance of flushing in

> rosacea

>> progression and vascular disease, " at least the extreme description

>> you gave.

>>

>> But what you're going through is deserving of attention in its own

>> right. If you're comfortable sharing your care publicly, what

>> medications do you find most helpful for controlling your flushing

>> and pain? What kind of phototherapy did you undergo, and how

> helpful

>> was it? Is your condition stable at the present time, improving, or

>> progressive?

>>

>> Marjorie

>>

>> Marjorie Lazoff, MD

>>

>>> Hi Marjorie,

>>>

>>> It was not my intention to invalidate anyone's feelings. I am

> very

>> aware

>>> that blushing is often considered an attractive trait, and in

> fact

>> in

>>> pre-rosacea days I took it as a compliment when anyone commented

> on

>> my

>>> healthy, glowing complexion. I'm sure I still would if it were

> to

>> happen

>>> today I realize that the discussion of flushing/blushing was

>> probably

>>> intended to focus on less severe cases of flushing and blushing,

>> but as Jan

>>> had asked in the original post what was so bad about flushing, I

>> feel it

>>> important to also acknowledge the significance of flushing in

>> rosacea

>>> progression and vascular disease, the fact that at times it can

>> indeed

>>> become extremely physically painful, and that there are many

> people

>> out

>>> there struggling to get through each day and night with this

>> horrible

>>> physical pain that completely overshadows the cosmetics of the

>> condition.

>>> That is not to diminish in any way the emotional impact of the

>> cosmetic

>>> aspects of rosacea - I know that pain too.

>>>

>>> Wishing everyone relief,

>>> Jen

>>>

>>>> Jen, I'm sorry to hear things are difficult for you. Of course a

>>>> discussion regarding the more commonplace blushing/flushing

>>>> experiences of rosaceans obviously does not include extreme

>> examples

>>>> such as you describe.

>>>>

>>>> If someone says they find blushing sexy, or doesn't find facial

>>>> flushing a big deal from a social perspective, why invalidate

> their

>>>> feelings just because you believe it doesn't apply to you, or

> rule

>>>> out that others might be perceived more favorably than you

> imagine?

>>>>

>

> --

> Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you don't give

> a meaningful subject or trim your reply text. You must change the subject when

> replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to rosacea-support-unsubscribe

>

May 8, 2002

I wonder, of those who suffer from rosacea in the

severe stage what percentage of them have altered

their diets? I believe diet to be the key in recovery

and management. At least that has worked for me, but

maybe I'm wrong. It could be that once we get to

advanced stages it's too late. And/or some rosacea

people will, no matter what, suffer more violent

symptoms.

--- Adam filter@...> wrote:

> (I just wanna say ahead of time that I dont want to

> speak for anybody here,

> so sorry if I say something wrong, offensive, or

> negative)

>

> It is true that Jen's case is unusually severe, but

> its absolutely important

> to understand exactly how severe flushing can be.

> Maybe everyone with

> cea doesn't have to live with a fan on their

> face every day, but it is

> important to understand the entire possible spectrum

> of this disorder.

> Also, even if most people with cea don't have

> such a debilitating pain,

> ALOT of rosacea sufferers do have varying degrees of

> facial discomfort. Dr.

> Nase even explains in his book that cea can

> become physically

> debilitating, and that the burning associated with

> cea is greatly

> underestimated by general physicians and

> dermatologists. He goes on to say

> that MOST cea sufferers do suffer from facial

> burning. The National

> cea Society says over 60% of cea sufferers

> have facial

> itching/burning, and I believe Dr. Nase claims the

> percentage might be even

> higher than that. That leaves seven million or more

> americans with varying

> degrees of facial discomfort, which I think makes it

> very important to

> discuss. Many people with cea will be

> fortunately enough never to have

> this problem, but alot of us do.

>

> I think the reason your analogy does not work, is

> because you are working

> under a misconception. Unfortunately it is a very

> common misconception,

> which i believe is at least partially responsible

> for the complete lack of

> proper cea research. Dr. Nase says in his book

> in a chapter entitled:

> " Common Misconceptions That General Physicians

> Have About cea "

>

> Under the heading: " Misconception #2: Most cea

> sufferers are in the Mild

> Stages of the Disorder "

> He explains that it is NOT true that most cea

> sufferers are only in the

> mild stages. He says that " numerous studies

> demonstrate that more than half

> of cea sufferers seen by physicians are in the

> moderate to severe

> stages " . Most studies showed that the numbers were

> probably somewhere betwe

> en 58-67%. The claim that most cea sufferers

> only have a mild case is a

> huge misconception, sort of like cea just being

> " adult acne " .. Its

> really widely known, but its just not true.

>

> I'm sorry if this turned out to be too negative,

> because I understand the

> importance of a positive attitude, but it does none

> of us any good to

> downplay the possible severity of this problem. It

> would just be living in

> denial. If cea were just a cute, trivial

> disorder, 75% of cea

> sufferers surveyed would not say it lowered their

> self-esteem, and certainly

> 56% of cea sufferers surveyed would not have

> said that cea has

> robbed them of their pleasure/happiness.

>

> Re: Flushing appeal (was:

> Re-bound effect?)

>

> >

> > Jen, I appreciate your personal difficulties and

> perspective. Here's

> > an analogy that may help explain my comments:

> imagine a group of

> > breast cancer patients sharing their experiences

> with Stage 1 cancer

> > being suddenly confronted with someone at Stage 4,

> describing what

> > she's going through. Can you see how hard it would

> be to resume

> > discussion without the less ill people appearing

> insensitive or

> > overly dramatic? It doesn't matter whether the

> person with Stage 4

> > cancer can empathize with those at Stage 1. By

> simply describing her

> > suffering in this context, the confrontation has

> already taken place,

> > her person's suffering trumps everyone else's

> suffering.

> >

> > But the analogy falls apart in one important

> respect: unlike a Stage

> > 4 breast cancer patient whose input can be of

> value to encourage

> > compliance among Stage 1 patients, your

> description falls well

> > outside the natural progression of rosacea. It's

> not the same

> > situation here since even untreated, rosaceans

> should not worry that

> > they are likely to ever experience what

> unfortunately you and others

> > do. Untreated rosacea may result in continued

> flushing, inflammation

> > and edema, with progression to telangectasias and

> phymas and eye

> > damage over the years and decades -- but not the

> kind of flushing and

> > facial pain you describe. So I don't agree in this

> context it

> > was " important to acknowlege the significance of

> flushing in rosacea

> > progression and vascular disease, " at least the

> extreme description

> > you gave.

> >

> > But what you're going through is deserving of

> attention in its own

> > right. If you're comfortable sharing your care

> publicly, what

> > medications do you find most helpful for

> controlling your flushing

> > and pain? What kind of phototherapy did you

> undergo, and how helpful

> > was it? Is your condition stable at the present

> time, improving, or

> > progressive?

> >

> > Marjorie

> >

> > Marjorie Lazoff, MD

> >

> > > Hi Marjorie,

> > >

> > > It was not my intention to invalidate anyone's

> feelings. I am very

> > aware

> > > that blushing is often considered an attractive

> trait, and in fact

> > in

> > > pre-rosacea days I took it as a compliment when

> anyone commented on

> > my

> > > healthy, glowing complexion. I'm sure I still

> would if it were to

> > happen

> > > today I realize that the discussion of

> flushing/blushing was

> > probably

> > > intended to focus on less severe cases of

> flushing and blushing,

> > but as Jan

> > > had asked in the original post what was so bad

> about flushing, I

> > feel it

> > > important to also acknowledge the significance

> of flushing in

> > rosacea

> > > progression and vascular disease, the fact that

> at times it can

> > indeed

> > > become extremely physically painful, and that

> there are many people

> > out

> > > there struggling to get through each day and

> night with this

> > horrible

> > > physical pain that completely overshadows the

> cosmetics of the

> > condition.

> > > That is not to diminish in any way the emotional

> impact of the

> > cosmetic

> > > aspects of rosacea - I know that pain too.

> > >

> > > Wishing everyone relief,

> > > Jen

> > >

> > > >Jen, I'm sorry to hear things are difficult for

> you. Of course a

>

=== message truncated ===

=====

The greatness of a nation & its moral progress can be judged

by the way its animals are treated. - Gandhi

__________________________________________________

May 8, 2002

I wonder, of those who suffer from rosacea in the

severe stage what percentage of them have altered

their diets? I believe diet to be the key in recovery

and management. At least that has worked for me, but

maybe I'm wrong. It could be that once we get to

advanced stages it's too late. And/or some rosacea

people will, no matter what, suffer more violent

symptoms.

--- Adam filter@...> wrote:

> (I just wanna say ahead of time that I dont want to

> speak for anybody here,

> so sorry if I say something wrong, offensive, or

> negative)

>

> It is true that Jen's case is unusually severe, but

> its absolutely important

> to understand exactly how severe flushing can be.

> Maybe everyone with

> cea doesn't have to live with a fan on their

> face every day, but it is

> important to understand the entire possible spectrum

> of this disorder.

> Also, even if most people with cea don't have

> such a debilitating pain,

> ALOT of rosacea sufferers do have varying degrees of

> facial discomfort. Dr.

> Nase even explains in his book that cea can

> become physically

> debilitating, and that the burning associated with

> cea is greatly

> underestimated by general physicians and

> dermatologists. He goes on to say

> that MOST cea sufferers do suffer from facial

> burning. The National

> cea Society says over 60% of cea sufferers

> have facial

> itching/burning, and I believe Dr. Nase claims the

> percentage might be even

> higher than that. That leaves seven million or more

> americans with varying

> degrees of facial discomfort, which I think makes it

> very important to

> discuss. Many people with cea will be

> fortunately enough never to have

> this problem, but alot of us do.

>

> I think the reason your analogy does not work, is

> because you are working

> under a misconception. Unfortunately it is a very

> common misconception,

> which i believe is at least partially responsible

> for the complete lack of

> proper cea research. Dr. Nase says in his book

> in a chapter entitled:

> " Common Misconceptions That General Physicians

> Have About cea "

>

> Under the heading: " Misconception #2: Most cea

> sufferers are in the Mild

> Stages of the Disorder "

> He explains that it is NOT true that most cea

> sufferers are only in the

> mild stages. He says that " numerous studies

> demonstrate that more than half

> of cea sufferers seen by physicians are in the

> moderate to severe

> stages " . Most studies showed that the numbers were

> probably somewhere betwe

> en 58-67%. The claim that most cea sufferers

> only have a mild case is a

> huge misconception, sort of like cea just being

> " adult acne " .. Its

> really widely known, but its just not true.

>

> I'm sorry if this turned out to be too negative,

> because I understand the

> importance of a positive attitude, but it does none

> of us any good to

> downplay the possible severity of this problem. It

> would just be living in

> denial. If cea were just a cute, trivial

> disorder, 75% of cea

> sufferers surveyed would not say it lowered their

> self-esteem, and certainly

> 56% of cea sufferers surveyed would not have

> said that cea has

> robbed them of their pleasure/happiness.

>

> Re: Flushing appeal (was:

> Re-bound effect?)

>

> >

> > Jen, I appreciate your personal difficulties and

> perspective. Here's

> > an analogy that may help explain my comments:

> imagine a group of

> > breast cancer patients sharing their experiences

> with Stage 1 cancer

> > being suddenly confronted with someone at Stage 4,

> describing what

> > she's going through. Can you see how hard it would

> be to resume

> > discussion without the less ill people appearing

> insensitive or

> > overly dramatic? It doesn't matter whether the

> person with Stage 4

> > cancer can empathize with those at Stage 1. By

> simply describing her

> > suffering in this context, the confrontation has

> already taken place,

> > her person's suffering trumps everyone else's

> suffering.

> >

> > But the analogy falls apart in one important

> respect: unlike a Stage

> > 4 breast cancer patient whose input can be of

> value to encourage

> > compliance among Stage 1 patients, your

> description falls well

> > outside the natural progression of rosacea. It's

> not the same

> > situation here since even untreated, rosaceans

> should not worry that

> > they are likely to ever experience what

> unfortunately you and others

> > do. Untreated rosacea may result in continued

> flushing, inflammation

> > and edema, with progression to telangectasias and

> phymas and eye

> > damage over the years and decades -- but not the

> kind of flushing and

> > facial pain you describe. So I don't agree in this

> context it

> > was " important to acknowlege the significance of

> flushing in rosacea

> > progression and vascular disease, " at least the

> extreme description

> > you gave.

> >

> > But what you're going through is deserving of

> attention in its own

> > right. If you're comfortable sharing your care

> publicly, what

> > medications do you find most helpful for

> controlling your flushing

> > and pain? What kind of phototherapy did you

> undergo, and how helpful

> > was it? Is your condition stable at the present

> time, improving, or

> > progressive?

> >

> > Marjorie

> >

> > Marjorie Lazoff, MD

> >

> > > Hi Marjorie,

> > >

> > > It was not my intention to invalidate anyone's

> feelings. I am very

> > aware

> > > that blushing is often considered an attractive

> trait, and in fact

> > in

> > > pre-rosacea days I took it as a compliment when

> anyone commented on

> > my

> > > healthy, glowing complexion. I'm sure I still

> would if it were to

> > happen

> > > today I realize that the discussion of

> flushing/blushing was

> > probably

> > > intended to focus on less severe cases of

> flushing and blushing,

> > but as Jan

> > > had asked in the original post what was so bad

> about flushing, I

> > feel it

> > > important to also acknowledge the significance

> of flushing in

> > rosacea

> > > progression and vascular disease, the fact that

> at times it can

> > indeed

> > > become extremely physically painful, and that

> there are many people

> > out

> > > there struggling to get through each day and

> night with this

> > horrible

> > > physical pain that completely overshadows the

> cosmetics of the

> > condition.

> > > That is not to diminish in any way the emotional

> impact of the

> > cosmetic

> > > aspects of rosacea - I know that pain too.

> > >

> > > Wishing everyone relief,

> > > Jen

> > >

> > > >Jen, I'm sorry to hear things are difficult for

> you. Of course a

>

=== message truncated ===

=====

The greatness of a nation & its moral progress can be judged

by the way its animals are treated. - Gandhi

__________________________________________________

May 8, 2002

I have to agree with Jen here. A lot of us have severe pain when it

comes to our flushing. Mine progressed so fast even while getting

photoderm done. My ears and face get bright red and throbes. I

can't stand it. I can't go to the dentist, eye doctors, or anything

like that without turning really red and hurting. I wake up during

the night with throbing pains in my ears from laying on them. Its

not fun. Some of u might never get this severe but its horrible.

Its a horrible way to live. I know how Jen feels and thats why one

of the women that is severe has opened up another rosacea site just

for us severe ones so we wouldn't down u all. I remember when I

first came to this group. I was happy to find others like me but

then again I was so disappointed that a lot of people are still

suffering after trying a lot of things. I also found out that a lot

of u, your rosacea isn't that bad and some times I would get rude

emails from some people in the group, telling me its not the end of

the world, so what if you're a little pink. I'm not a little pink, I

have really red blotchy skin and when I flare its horrible and

painful. I am only in my 20s and having to try to raise a family

dealing with this is horrible. I have to keep a fan blowing on me

almost all the time. Now that not fun. I think I could of delt with

it a little better if I was in my 40s and my child was all grown up.

Then I wouldn't have to try to explain this to my little 3 year old

why mommy can't do certain things. It takes me a good while in the

mornings trying to cover this face. But after I'm finish, I feel

alot better about myself, because my face looks better. But then

when I start flaring and the pain comes on it gets me all down and

depressed. Its an every day thing. I just want to let the ones that

don't have it bad know that it can get worse, please try to keep it

under control. Now I know thats hard to do. I couldn't even do it.

But for u that are mild and your rosacea looks healthy, don't make

rude comments because its painful to us severe ones.

God Bless To You All

> Sorry if this is digressing a little, but as someone physically

handicapped

> by chronic flushing, I have to put a word in here for those in this

group

> (and there are more than a few of us) for whom flushing and/or

blushing has

> progressed to a stage far beyond being a symptom or condition that

can be

> considered a " skin imperfection " , " sexy " or a " social

sensitivity. " It most

> definitely can become very physically painful and debilitating.

Thankfully,

> most rosacea cases will never progress to this stage, but there are

a

> significant number of us who suffer severe, daily, painful

flushing. When I

> blush or flush it is not cute, and my cheeks do not take on a

healthy glow -

> rather my entire face including my eyes, ears, and sometimes neck,

flush an

> intense red-purple, accompanied by swelling and worst of all,

disabling

> burning and pulsating pain. Believe me, no one who sees me like

this has

> ever found it appealing, instead there is much concern. In my case

it can

> only be managed (so far) by living with a fan blowing directly on

my face

> 24/7, strong medications, and regular photoderm/laser treatments

that have

> been ongoing for the past several years. It is vascular rosacea at

it's

> worst, nothing appealing about it.

>

> Jen

> :

> >

> ><<

> >> oh no, what's so bad about flushing.. everything! first,

flushing

> >> is cosmetically unappealing. your skin should all be the same

> >> colour throughout

> >

> >Obviously the universe of women who use blusher would disagree with

> >you, 007. >>

May 8, 2002