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

[Guest guest]

I'm right there with you Jen, 100%. I feel your frustration. It is

not right for people to be making rude comments on the support

group. Here it is we have been here for years and I have never seen

such rude comments downing us for discussing our severe rosacea. We

do not need any more stress in our lives. What gets me is when

people write something and all of us take it the same way and then

they comment, " I didn't say it that way, you took it the wrong way. "

Yea right. We have the right to be here just as much as everyone

else.

Sheila

> Wow Marjorie,

>

> I'm not really sure that most of what I would like to say in

response to the

> first part of your post would be at all helpful to the group, so I

will keep

> my thoughts to myself apart from making a couple of points before I

bow out

> of this thread. I feel that your analogy is both unfair and

wrong. As an

> active member of this group since its very early days, until now I

have

> never once been made to feel like an outsider or that I shouldn't

share my

> experiences in a particular discussion because discussing my (more

severe)

> condition would make others appear insensitive or overly dramatic.

I have

> always found it a safe, welcoming place to come to freely share my

thoughts

> and experiences, have found incredible support and friendship, and

hopefully

> have offered my share too. I'm appalled to think that by

participating in

> this thread, or any other for that matter, I might have made anyone

feel

> uncomfortable, or that they should have to worry that their rosacea

would

> ever progress to such a severe stage. As I have received only

positive

> emails since joining this thread, I have to believe that is for the

most

> part not the case. Anyone who knows me knows that is the last

thing I would

> ever want to do. I have always tried to be supportive, encouraging

and

> hopeful, and I am always the first to point out that most rosaceans

will

> never progress to this stage. Actually as I write this, I'm pretty

surprised

> to find myself in a position of feeling a need to defend myself as

I am the

> least confrontational person I know! As for " trumping " anyone

else's

> suffering - oh, please.

>

> >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 acknowledge the significance of flushing in

rosacea

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

> >you gave.

>

> I disagree. IMHO there are more cases of disabling flushing and

burning

> pain than most people realize. Yes, my case is more severe than

many, but

> as Adam has already discussed in his references to Dr. Nase's book,

many

> rosacea sufferers do experience significant burning pain, and this

aspect

> may be " greatly underestimated " by doctors. I am continually

amazed and

> concerned at the number of people with cases similar to mine that I

meet

> through the internet and also sometimes through my doctors. Dr.

Nase once

> shared with me that it was his estimate that 1 in 25 (of more than

16,000)

> rosaceans that he communicated with had very similar symptoms to

mine.

>

> I don't mind at all sharing my care publicly. I've always been

more than

> happy to discuss my treatments, and have done so in this group many

times in

> the hope that something in them may be useful to somebody else.

Although I

> am still what would be considered a very severe case, I am doing

somewhat

> better than when I was at my very worst stage more than 4 years

ago. I owe

> much of my improvement to this group and to an incredible amount of

personal

> help and advice from Dr. Nase. Of all the meds I've tried, the

most helpful

> at reducing my flushing and pain are Clonidine (high dose) and

Neurontin.

> This combination is somewhat effective, although never eliminates my

> flushing or pain. I have also undergone multiple photoderm (IPL)

treatments

> and currently, Vbeam laser There are more detailed summaries in

the

> archives but briefly, I find these treatments quite effective on

more

> superficial symptoms, such as telangiectasia and redness, and

somewhat

> effective on flushing and burning, although in my case the results

are

> fairly temporary so the treatments are ongoing.

>

> Moving on,

> Jen

>

>

> >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?

[Guest guest]

" Flushing appeal " was not *my* subject line. My question about

flushing appeared in the post " Re-bound effect. "

But since this post replaced mine without asking a new question, or

stating clearly that the author of the new subject had something

different in mind and was NOT the person who asked the question

originally, I feel it necessary to respond.

In post #38540, Marjorie Lazoff wrote:

" Perhaps my words sounded like

I was trivializing rosacea, which is why others responded by

highlighting the more extreme examples within a discussion of

commonplace signs and symptoms. "

When I originally asked " ...what's so bad about flushing...? " it was

within the context of someone basically completely ignorant about

rosecea. It was an honest, open-ended question, not necessarily about

" commonplace " nor " severe " flushing but just flushing in general.

It wasn't intended to specifically include or exclude ANYONE in this

group; and, as I read it, to do so would be in violation the group

charter. (Posts that are not meant for EVERYONE are supposed to be e-

mailed privately, are they not?)

In the context of some of the comments in " Flushing appeal, " the

question [ " ...what's so bad about flushing...? " ] might now sound flip

or disrespectful, but it wasn't asked that way BY ME.

I am so sorry to everyone who took the time to respond to my original

question and who were, in my view, treated disrespectfully as a

result.

That was never *my* intention either.

[Guest guest]

" Flushing appeal " was not *my* subject line. My question about

flushing appeared in the post " Re-bound effect. "

But since this post replaced mine without asking a new question, or

stating clearly that the author of the new subject had something

different in mind and was NOT the person who asked the question

originally, I feel it necessary to respond.

In post #38540, Marjorie Lazoff wrote:

" Perhaps my words sounded like

I was trivializing rosacea, which is why others responded by

highlighting the more extreme examples within a discussion of

commonplace signs and symptoms. "

When I originally asked " ...what's so bad about flushing...? " it was

within the context of someone basically completely ignorant about

rosecea. It was an honest, open-ended question, not necessarily about

" commonplace " nor " severe " flushing but just flushing in general.

It wasn't intended to specifically include or exclude ANYONE in this

group; and, as I read it, to do so would be in violation the group

charter. (Posts that are not meant for EVERYONE are supposed to be e-

mailed privately, are they not?)

In the context of some of the comments in " Flushing appeal, " the

question [ " ...what's so bad about flushing...? " ] might now sound flip

or disrespectful, but it wasn't asked that way BY ME.

I am so sorry to everyone who took the time to respond to my original

question and who were, in my view, treated disrespectfully as a

result.

That was never *my* intention either.