Re: Activism: How can we work together?

[Guest guest]

For Carolyn Gutman Dey & others: Carolyn, I applaud your enthusiasm and all

the sites you have assembled but wonder how long you have been on this list as

this past summer, Heidi and another girl really went all out soliciting emails

from the entire list which they put together and sent to Oprah Winfrey. We

all old our story and they are all so different and heart rendering. I believe

they were sent to 60 minutes, 20/20, Dateline and many others. also. As far as

I know, NO ONE has responded and there were something like 80 or more. You

have some excellent ideas and I will do all I can to help you as we certainly

DO need coverage. In 57 years of IC and 6-8 of VV and all the rest, I find

few doctors even consider VV any more than a mere annoyance. Like IC, it took

SO many years for doctors to take it seriously, even after it was found to be

a real palpable disease and I had it for over 40 years before that and was

always told it was all in my head which has made a neurotic or some such, out

of me. I see these young gals going thru the same thing with VV which I also

have so know full well how badly the need is for an answer!

The letter from Kienan really tore me apart and I tried to answer it with

compassion but also to try to tell her that screaming out for someone to do

something will only make her symptoms worse as stress DOES, and suggested

things for her to do. Youth is so impatient, so at l9, she has not become

seasoned to the pains and vicissitudes of life, perhaps, but I tried to

explain that the field of medicine is FULL of unanswered ailments.

Keep up the good work and call me I can help. Lhend12826@... Lorane

[Guest guest]

Heidi: I will be happy top distribute the pamphlets you are distributing

there, here in Omaha, if you would like me to. Lorane

[Guest guest]

I can!

[Guest guest]

Lorane:

That would be great! Thank you for volunteering your time to distribute

the pamphlets...every little bit helps.

Is anyone else interested in distributing them?

Heidi

[Guest guest]

I live on long island NY and i would also distribute the pamphlets. Jeannette

Dave and Heidi wrote:

>

>

> Lorane:

>

> That would be great! Thank you for volunteering your time to distribute

> the pamphlets...every little bit helps.

>

> Is anyone else interested in distributing them?

>

> Heidi

>

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

>

[Guest guest]

Heidi,

I'd be happy to distribute them in Western Mass. and Northern CT. After

being sick for so long and feeling so useless, it feels great to have a

purpose!!!

Janis

[Guest guest]

Dear Heidi,

I would also love to help. I could distribute the pamphlets in Ames,

Des Moines and Iowa City, IA. I just think about all the women out

there who suffer from this and still have no idea what's going on.

Glad to help.

[Guest guest]

Heidi,

As a nursing student I come in contact with many health care providers. I

am starting a semester-long women's health rotation next week, and would

love to be able to distribute your pamphlet to the providers I work with.

Please let me know how I can get a copy. Thanks for all your efforts -

keep up the great work!

At 11:42 AM 12/27/1998 -0600, you wrote:

>

>

>Lorane:

>

>That would be great! Thank you for volunteering your time to distribute

>the pamphlets...every little bit helps.

>

>Is anyone else interested in distributing them?

>

>Heidi

>

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

>