Re: Thanks Laurie

[Guest guest]

Dear Laurie,

Thanks for sending us your case history (twice). I posted it with

the others on our members " files " .

I know just about nothing about fund raising, but I am open to it

and if it will get EN in the " limelight " I am all for it. Don't we

need a " critical mass " of group members to do it? That is what I have

been up to. It's how I found you, Laurie. I have been sending invites

to an old board I found on a search (Another thing, I am fairly new to

computers and I might be going about this in a very slow and

unproductive way), There are 1300 posts on this board I found, many

are from the mid'90s so some email address may not even work. I have

sent out about 400 invites so far. I'm limited by my access to the

computer, since my husband needs to use it for his market investing

(which is a major source of income) and there is just so much work I

can do before I get " punchy " . I am doing this out of love because I

would not ever do this as a job.

As an aside, Laurie, are you related to the Seligmans from NY? My

first boyfriend was Jeff Seligman who is now 56. He now lives in

Tucson,AZ and is an electric engineer/PHD student. I'm still in

contact with him after all these years. People tend to stay friends

with me forever.

Have a great day!

Love,

> Hello everyone.

>

> Yesterday morning I took the time to write up my experience with EN

and then

> when I clicked send it took me to my login page (thought I was) and

it didnt

> post.

>

> I am curious to know why I was invited to this board, yes I have EN,

but it

> is so rarely mentioned, how did you know?

>

> So here I go again.

>

> First off thanks for the invite. I havent much thought of EN for

the last

> 5-7 years, maybe more, maybe less.

>

> I was 17 or 18 the first time I had a knot on my leg and didnt know

what the

> heck it was. I went to the school doctor and was fortunate that she

knew what

> it was because she had it before. They put me on a high dose of

Advil, I

> remember them looking like M & Ms and going to the library to make

sure they were

> " real " drugs and not placibos.

>

> I continued to get EN nodules throughout my 20s usually it was in

result of

> some trauma to my body, example, I was getting strep throat quite a

bit, the

> strep would go away and the EN would arrive. There was a summer

that I kept

> getting re-infected with Strep and the EN was there about the whole

summer.

> (worked at an elderly retirement home). Another example I remember

hitting my

> shin REAL hard against the bumper of the moving truck, ended with a

not so

> pretty bruise and by the time the skin had healed and the bruise was

gone, a nodule

> was starting.

>

> I would go into remission sometimes for a few years on end and then

I would

> get a nodule and start into the recurring nodules for a while and

then they

> would vanish.

>

> I remember seeing a few things in my life about EN. It isnt the

most talked

> about disease/condition. Ive been to all sorts of doctors, been

tested for

> sarcoidosis and other things.

>

> One thing the doctors kept on saying is, I cant believe you have had

this for

> so long, it usually disappears in the early 20s, one doctor even

brought me

> up in front of his class because here I was in my late 30s (at the

time) still

> having recurring nodules.

>

> I havent had a nodule in I cant remember how long over 5 years for

sure

> probably closer to 7 or more. A few months back I tripped and fell

and I hit my

> shin real hard...when I was writing my profile yesterday morning, I

was

> thinking, wow I didnt get a nodule....I must finally be over this.

I ran my hand up

> my shin and felt the oh too familiar knot. Its still small maybe

1.5x1 inches

> in size, the skin isnt stretched taught yet....and Im hoping it will

go away

> on its own. If not back to the doctors for more prednisone as that

is the

> ONLY thing that has put this into remission.

>

> Do you guys know of any type of non-profit program or organization

for EN?

>

> I can relate to the one person can make a difference. Perhaps as

this group

> grows if there is a non-profit we can do a fundraiser (I have ideas)

for them

> and help raise either awareness or money for research....sure cant

help to

> look into it.

>

> Anyway I must cut this short, have to go to work today.

>

> Make it a great one!

>

> Laurie Seligman

> Charter CEO Club Member

> Director

> EverydayWealth

> <A

HREF= " http://www.freedomincorporated.com/ " >http://www.FreedomIncorpora

ted.com</A>

>

> For your Free Financial Planning Interactive CD-Rom Click Here:  <A

HREF= " http://www.wearefreedom.com/ " >

> http://www.WeAreFreedom.com</A>