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

[Guest guest]

I agree completely.

cathy

> > 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.