We're here for you NP

i wish you a miraculous recovery! failing that, a cure soon.

ps: does using hydrogen peroxide as an external wash help any?
[Edited 1/23/06 12:41pm]

Chin up and head high. We are all here for you.

xxooxx
M

Don't worry Nekkid. We are here for you . You are so brave to share this with us. I take it as a blessing and a compliment. Oprah was talking about this guy that she just had to get on her show because he flooded her email everyday by himself. Trust me, that's like mouse pellets compared to what we can do! Let us know what you decide and what I can do to help.

purpleizpassion said:

Behold the power of ORG

EskomoKisses said:

yes!

EskomoKisses said:

she has NO idea

This Eagle Raises His Head

With winds of faith,
I will fly through this storm.
I cannot go around it.
Or, over it.
Even under it.
Only one way left to go.
Face it head on.

With all my might,
All my strength,
I must fly against the winds.
Find out what I'm made of.
Face the storm's fury.

No longer will I fear,
The lightning.
Or, the thunder.
Feel the pain of the hail.
For I must be strong.

Even though I am forced,
To go it alone-
Something stronger than I,
Grants me the strength.
So, now I must trust it.

What lies ahead is my greatest trial.
With strength from on high,
I am sure to prevail.
The storm is just ahead,
So, this eagle raises his head.

~Robert Coskrey

Have people mocked you though? I can't imagine people could be so cruel, but what do I know.

I think it would be a great idea to get together with people (on-line most likely) who have the same condition as you, as well as people with other similar and/or rare conditions - because although your symptoms may differ, you may be able to support each other in terms of medical treatment (or lack of it) experiences, emotional impact, impact on immediate family etc.

My sister has a mammary duct disease, which causes her to get mastitis all the time even though she has never breastfed! Doctors did not recognise the condition until she ended up in the university hospital getting an enormous abcess drained (she now has a permanent open wound). She has had a very tough time being pregnant last year and had no support from hospital staff when she chose NOT to breastfeed - the baby would ingest a large amount of pus if she tried, and mastitis would keep recurring. She is in the same boat as you in regards to anti-biotics.

I think there are probably loads of people all around the world who would benefit from an on-line support group. Maybe you could start one?

If you can afford to --->

http://www.apollohospital...rvices.htm

or google Al Waha Clinic (Dubai)

girl.

I'll e-mail or write to anyone you want us to. Did you contact your local legislators and congressmen? Sometimes they can find funding and help for people with "orphan" diseases.
Actually we should all contact our own congress-people and let them know we want action taken on this disease.Hilliary will be hearing from me.

Well...maybe too late but here it goes.

Such a misunderstanding.

Love ya like crazy.

Are you still thinking about Mayo? I really hope that they'll be able to help you in some way. It would be nice if they were already working on a cure. If not, perhaps suggest it to them. I'll see what I can dig up when I'm at work tomorrow.



I feel like crying, myself.

so well said naked... and with such dignity and bite

i love and respect your will to do this for your daughter (hoping she really doesn't develop the disease!)
lots of love and hugs beautiful girl

Oh Naked.. I wanna help!! Tell me what I can do! You're in my thoughts gorgeous lady!

nakedpianoplayer said:

I don't think it's a strange idea at all, to contact Oprah. For those of you who want to support naked, it took me a while to find the link to her "contact" page but if you go to http://www2.oprah.com/index.jhtml and then click on "Oprah.com Membership" (bottom right) there is then a link on the left that you can use to email the Oprah Show. I'm about to email them to ask them to feature Hidradenitis Suppurativa on the show.

Naked. I'm glad you told us about this. I had no idea this disease even existed. It must be a struggle and I'm sorry to hear about your concerns for your daughter. I do hope that somebody will help you to get more funding for research/better drugs. Now we all know more, I'm sure a lot of us will do anything we can to help.

Take care, girl.
[Edited 1/23/06 23:27pm]

Here for u hun

thank you again guys

heres what i've come up with overnight.... i think if i have a ton of you guys send oprah emails, it may look as if i havent given her the chance to respond to me or not (whatever her choice is). so, instead of having to "call in the troops" just yet, im going to sit and wait a bit and see what she does i definately dont want to blow an opportunity that may be here for so many who need it.


but, believe me... when the time comes.... i will be calling on you again to get those emails going, its so nice to know that i have the support of so many of you and that i can count on your wonderful hearts to help with something i think could touch so many people

im not quitting, dont get me wrong, im far from quitting... but i just need to let this one sit for a second and see what happens from here

i adore you all...

*pulls the troops back*

Nakie...I just found a really good web site!


http://hs-foundation.org/index.html

purpleizpassion said:

standing at ease

purpleizpassion said:

The 501st stands ready.

CoJones said:

TMPletz said:

Tru Souljah's!!

You're in my thoughts and prayers...

applekisses said:

you CERTAINLY DID !!!!!

that may be one of the most helpful, up to date sites i have ever seen

im calling my doctor tomorrow morning to refer her to this site and see if we can find any useful information from there !!!!!


girl, you ROCK

thank you so much

lol@you guys and the troops


you bring a smile to the face of a woman that really needs it


thank you guys

nakedpianoplayer said:

orgnote