WHAT A BOMBSHELL!!!

[Guest guest]

JUST NEWLY DIAGNOSED WITH A DOUBLE WHAMMY SYSTEMIC LUPUS AND RA. I AM

AN ACTIVE 53 YEAR OLD, WHAT A CRIMP. READ ALL THE BOOKS TALKED TO THE

DOCTOR, ON A METHOTREXATE SHOT EVERY WEEK ALONG WITH MUCH MORE MEDS,

HAVE GOOD DAYS AND BAD ONES. BUT I FEEL MY FAMILY AND HUSBAND JUST DO

NOT UNDERSTAND. I GET I DONT NEED TO HEAR ABOUT THIS EVERYDAY. WELL I

DIDNT KNOW THAT I WAS TALKING ABOUT IT EVERYDAY, THIS IS A LITTLE NEW

TO ME, THEN COME THE INADEQUET FEELINGS, THAT THIS IS JUST NOT ME, AT

TIMES I FEEL HOPELESS AND HELPLESS, I GUESS THIS TO SHALL PASS????I

LOOK AT EVERY OTHER WOMAN NOW AS A THREAT. WHAT IS ONE TO DO??I JUST

WANT A LITTLE PART OF ME BACK. ANY SUGGESTIONS? THANKS ALL GINNY

[Guest guest]

I wish I could provide you more support.  I was diagnosed with just RA when I

was 20, a new mother and wife.  For me I just dealt with the diagnosis.  I

didn't mourn for the person I was, I just had to embrace the person I become,

whatever that would have been.  Thirteen years later, I am home at this moment,

five days after having bilateral knee replacements and dealing with the result

of having RA.

 

This disease will not stop you unless you let it.  Most medications have failed

me but it has not kept me from living my life.  Yes, I have to modify things,

but it isn't the end of the world.  You also have to think of the positives.  It

isn't cancer, it isn't some other horrible illness.  Many people have success

with medications...I didn't but most do.

 

My advice is make sure you have a rheumatologist that you feel comfortable with

and is well educated.  If I had the rheumatologist then that I have now, I might

not be sitting here at age 32 with two new knees.  A great rheumie is worth

their weight in gold.  Also, educate yourself.  However, be careful with what

you read on the internet, there are more bad experiences, typically, than good. 

Those who are doing well don't have a need to seek support.

 

Shandi

From: boundv <boundv@...>

Subject: [ ] WHAT A BOMBSHELL!!!

Date: Wednesday, July 16, 2008, 12:34 PM

JUST NEWLY DIAGNOSED WITH A DOUBLE WHAMMY SYSTEMIC LUPUS AND RA. I AM

AN ACTIVE 53 YEAR OLD, WHAT A CRIMP. READ ALL THE BOOKS TALKED TO THE

DOCTOR, ON A METHOTREXATE SHOT EVERY WEEK ALONG WITH MUCH MORE MEDS,

HAVE GOOD DAYS AND BAD ONES. BUT I FEEL MY FAMILY AND HUSBAND JUST DO

NOT UNDERSTAND. I GET I DONT NEED TO HEAR ABOUT THIS EVERYDAY. WELL I

DIDNT KNOW THAT I WAS TALKING ABOUT IT EVERYDAY, THIS IS A LITTLE NEW

TO ME, THEN COME THE INADEQUET FEELINGS, THAT THIS IS JUST NOT ME, AT

TIMES I FEEL HOPELESS AND HELPLESS, I GUESS THIS TO SHALL PASS????I

LOOK AT EVERY OTHER WOMAN NOW AS A THREAT. WHAT IS ONE TO DO??I JUST

WANT A LITTLE PART OF ME BACK. ANY SUGGESTIONS? THANKS ALL GINNY

[Guest guest]

Ginny, welcome to the group. Having a good support system is key.

Talking to friends and family helps, but sometimes you just need to

talk to someone who knows what it feels like to go through a " flare " .

One thing that I have learned (I was an active 24 y/o with a promising

career when I was diagnosed) is that pain is a feeling; pain doesn't

define who you are as a person.

I have struggled with it myself and I need to find the person who I am

susposed to be NOW, instead of trying to find the person who I was

before RA/fibromyalgia. It's a hard process, I am not going to lie.

This web board has been extremely supportive and knowledable. You do

not have to go through this alone.

>

> JUST NEWLY DIAGNOSED WITH A DOUBLE WHAMMY SYSTEMIC LUPUS AND RA. I AM

> AN ACTIVE 53 YEAR OLD, WHAT A CRIMP. READ ALL THE BOOKS TALKED TO THE

> DOCTOR, ON A METHOTREXATE SHOT EVERY WEEK ALONG WITH MUCH MORE MEDS,

> HAVE GOOD DAYS AND BAD ONES. BUT I FEEL MY FAMILY AND HUSBAND JUST DO

> NOT UNDERSTAND. I GET I DONT NEED TO HEAR ABOUT THIS EVERYDAY. WELL I

> DIDNT KNOW THAT I WAS TALKING ABOUT IT EVERYDAY, THIS IS A LITTLE NEW

> TO ME, THEN COME THE INADEQUET FEELINGS, THAT THIS IS JUST NOT ME, AT

> TIMES I FEEL HOPELESS AND HELPLESS, I GUESS THIS TO SHALL PASS????I

> LOOK AT EVERY OTHER WOMAN NOW AS A THREAT. WHAT IS ONE TO DO??I JUST

> WANT A LITTLE PART OF ME BACK. ANY SUGGESTIONS? THANKS ALL GINNY

>

[Guest guest]

Shandi

Thank you very much for your inspiring letter to other RA sufferers. It has got

me thinking a lot, Because I didn't think I could go on. I guess this is my

first flare and it was horrible. I am feeling a little better. Yes modifying the

way I do things it helping. I learn to walk very slowly when necessary.

Cleaning house is all different now. I love to clean house. I can't clean house

anymore. So i do it differently. For example. I set the basket on something to

fold clothes instead of in the floor, this way I don't have to bend over. If I

am in real bad pain. I don't do anything except what I am able to do, since

stopping altogether is out of the question.

 

From: boundv <boundv (DOT) com>

Subject: [ ] WHAT A BOMBSHELL!!!

@gro ups.com

Date: Wednesday, July 16, 2008, 12:34 PM

JUST NEWLY DIAGNOSED WITH A DOUBLE WHAMMY SYSTEMIC LUPUS AND RA. I AM

AN ACTIVE 53 YEAR OLD, WHAT A CRIMP. READ ALL THE BOOKS TALKED TO THE

DOCTOR, ON A METHOTREXATE SHOT EVERY WEEK ALONG WITH MUCH MORE MEDS,

HAVE GOOD DAYS AND BAD ONES. BUT I FEEL MY FAMILY AND HUSBAND JUST DO

NOT UNDERSTAND. I GET I DONT NEED TO HEAR ABOUT THIS EVERYDAY. WELL I

DIDNT KNOW THAT I WAS TALKING ABOUT IT EVERYDAY, THIS IS A LITTLE NEW

TO ME, THEN COME THE INADEQUET FEELINGS, THAT THIS IS JUST NOT ME, AT

TIMES I FEEL HOPELESS AND HELPLESS, I GUESS THIS TO SHALL PASS????I

LOOK AT EVERY OTHER WOMAN NOW AS A THREAT. WHAT IS ONE TO DO??I JUST

WANT A LITTLE PART OF ME BACK. ANY SUGGESTIONS? THANKS ALL GINNY

[Guest guest]

Hi Ginny:Welcome to this group of caring, wonderful people. It must be

very difficult for you to have to deal with both RA and Lupus.

I have RA and I was totally overwhelmed when I got diagnosed, 5 1/2

years ago. I had so much pain and suffering that I thought my life was

over. I had never heard of RA before it reared its ugly head.

My Rheumy has been so helpful educating me about RA. She has my RA

under control, and I thank God everyday that she is my Dr. My life is

different now, as I tire easily, and rest often. It is the only life I

have, so I do the best I can each day. My RA is much better, so I am

trying to get off of Pred., and hope I will be successful.

My advice to you is, just take one day at a time, and if you have to,

just take one minute at a time. On bad pain days, rest as much as

possible. It does take time for the meds. to work, and I know it is

very hard waiting for this to happen. Please don't get discouraged.

I do know how you feel when your family and friends just do not

understand what you have to deal with every day. It is very upsetting

to say the least. Everyone here has been through that. We all

understand what you are feeling, and going through. We are here for you

Ginny.

I hope you will be feeling better soon, and have pain free days.

Hugs, Barbara

>

> JUST NEWLY DIAGNOSED WITH A DOUBLE WHAMMY SYSTEMIC LUPUS AND RA. I AM

> AN ACTIVE 53 YEAR OLD, WHAT A CRIMP. READ ALL THE BOOKS TALKED TO THE

> DOCTOR, ON A METHOTREXATE SHOT EVERY WEEK ALONG WITH MUCH MORE MEDS,

> HAVE GOOD DAYS AND BAD ONES. BUT I FEEL MY FAMILY AND HUSBAND JUST DO

> NOT UNDERSTAND. I GET I DONT NEED TO HEAR ABOUT THIS EVERYDAY. WELL I

> DIDNT KNOW THAT I WAS TALKING ABOUT IT EVERYDAY, THIS IS A LITTLE NEW

> TO ME, THEN COME THE INADEQUET FEELINGS, THAT THIS IS JUST NOT ME, AT

> TIMES I FEEL HOPELESS AND HELPLESS, I GUESS THIS TO SHALL PASS????I

> LOOK AT EVERY OTHER WOMAN NOW AS A THREAT. WHAT IS ONE TO DO??I JUST

> WANT A LITTLE PART OF ME BACK. ANY SUGGESTIONS? THANKS ALL GINNY

>