Diagnosed 15 years ago last 4 years have been bad,

[Guest guest]

Had to fight with SSA, have gone to 5 Dr. finally find one that listens. Seems

to have going in the right direction I can walk today not far but am on my feet.

I am taking Cimzia which really has helped. I am also active in Al Anon and my

group has been as supportive as they can be. They don't realize that their help

and assistance makes me feel worse emotionally because it makes me in my twisted

mind -- helpless. I know I am powerless buit I am not helpless and this ugle

disease does not keep my mind from working if anything it sends it into

overtime.

When I o have a good day I overdo and the next day is worse, trying to find

BALANCE that is a nasty B word.

Thanks for listening. D

[Guest guest]

Hi D.  I am glad you finally found a Rheumy that you like, and who listens to

you.   I am sure that has been a very frustrating time for you.  I agree with

you.  RA is a very ugly, relentless disease.

 

I had a hard time pacing myself also.  It did not come easy to me.  But, I

have learned to do so.  I was the type who did everything all the time, go, go,

go.  Then RA reared its ugly head to me.  If I had continued doing the things

I did, the way I did them, I would have never been able to get out of bed.  If

I did a lot in one day, I spent the next 4 days in bed recovering from over

doing.  I now make a plan for myself before I get out of bed in the morning. 

I spread out what I want done, and if I don't finish, I will do it the next

day.  This was very hard for me to do, but I did it.  I am just happy I can

do things, even if I am slow. RA has been a learning lesson for me.

 

No one really understands RA, only the people who have it.  I look very health,

have been told I am beautiful, etc.  Everyone, friends and family would say,

" You look so wonderful, it could not be that bad. "   They pressured me for lunch

dates, beach etc.  When I was so bad off, I told them no, I can't do it. 

They all looked at me like I had rocks in my head.  I could not deal with it

anymore.  I felt so guilty for refusing to go shopping, the beach, the movies,

lunch.  It was eating me up.  I finally got through to everyone, I am in

agony, my feet and ankles were so painful I could not stand on them.  Now when

I say no, I mean no.  I always did for everyone, no matter what.  They had

never heard me say no before.  It took everything in me to say no, and I say

no when I have to.  I also don't feel guilty anymore.  Let someone walk in our

shoes for 24 hours, and see what they have to say to the agonizing pain we

have.  I would not wish

this ugly disease on anyone.

 

It is good for you that you found our wonderful group.  WE ALL UNDERSTAND your

pain and suffering.  I wish you many pain free days ahead.  Again, welcome

here.

 

Hugs,

 

Barbara 

From: qualls.diane <qualls.diane@...>

Subject: [ ] Diagnosed 15 years ago last 4 years have been bad,

Date: Saturday, May 29, 2010, 12:36 PM

 

Had to fight with SSA, have gone to 5 Dr. finally find one that listens. Seems

to have going in the right direction I can walk today not far but am on my feet.

I am taking Cimzia which really has helped. I am also active in Al Anon and my

group has been as supportive as they can be. They don't realize that their help

and assistance makes me feel worse emotionally because it makes me in my twisted

mind -- helpless. I know I am powerless buit I am not helpless and this ugle

disease does not keep my mind from working if anything it sends it into

overtime.

When I o have a good day I overdo and the next day is worse, trying to find

BALANCE that is a nasty B word.

Thanks for listening. D