Re: Introduction (long...)

[Guest guest]

,

Welcome to our family.

This is the most caring group on the net. We love and care for each other

here. It helps to have those who totally understand what each other are

going through.

The fatigue--oh yes. I'm so struggling with that right now. I am out of

breath, my muscles are like mush. I am getting an ultrasound on Thursday

to check and see if anything is in my Abdominal cavity that shouldn't

be---like uterine or ovarian cysts.

People just do not understand how it is for us.. even friends misjudge

us..we look healthy---so why are't we working.. etc etc.

Anyway---type as much as you want or need to!!! don't be afraid to let

everything out--ask any questions. You're home now.. Pull up a rocker and

have some hot drink and cookies--and relax in warmth and comfort.

HUGS

Liz

~~~~~~

" Happiness comes of the capacity to feel deeply, to enjoy simply, to think

freely, to risk life, and to be needed. " **Storm on**

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult ADD GROUP PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

In a message dated 1/28/2004 12:56:39 AM Pacific Standard Time,

suzrwin@... writes:

Thanks for allowing me to bore you with my background; just typing

it has relieved me quite a bit!

, you have not bored me at all! It takes sharing to become familiar

with each other and... you have found a group who can definitly understand where

you are, and what you have been through!

Welcome! I am glad you found us! Please share as often as you would like!

We will try to be here for you!

K

Adrienne's Mom

Adrienne age 20, diagnosed at age 15, HLA B27+, Spondy, Fibro, Chronic

Fatigue, Hypothyroid, University student... Piano and Bassoon player, Dancer,

Actress, Great kid!

[Guest guest]

,

There is a section of the website where members have posted physician

recommendations. Hopefully, this link works:

http://www.risg.org/cgi-bin/w3t2/postlist.pl?Cat=

<http://www.risg.org/cgi-bin/w3t2/postlist.pl?Cat= & Board=suggestions>

& Board=suggestions

If the link above doesn't work, I got to it by going to www.risg.org

<http://www.risg.org> , then I clicked on " Table of Contents " , then I

clicked on " Physicians by Region " (you have to scroll down to get to that

selection).

Where do you live? If you e-mail back to the group where you live, some

people in the e-mail forum could maybe suggest doctors in your area (if any

of us live in the same area).

It sounds like you definitely need a new rheumatologist. I went without

proper diagnosis for 24 years. Then in 1997, I went to my current

rheumatologist who said, " Well, it's not rocket science, it's obvious what

you have! " and diagnosed me with Reactive Arthritis (reiter's syndrome).

Now that I know more about it, it was really obvious all those years what I

had, I just hadn't found a good doc. until then. I have the HLA-B27 marker

too.

Good luck!

God Bless,

Janet in San Francisco

ReA since 1973; diagnosed 1997; HLA-B27+