part 2

[Guest guest]

Hello!

Here is my part two, thank you for coordinating this Heidi, it has

been very interesting reading people's responses.

Since I was only diagnosed over a month ago, December 10th, my track

time has not been very long for dealing with it. I have remained in

the hold of either one incredibly long flare, or have been having

nearly daily flares, I'm not sure how to look at it.

I remain on 40 mgs. of Prednisone, and will until the Metho really

kicks in. I am also on Colchicine.

The worst part of this is starting to feel better, believe it or not,

because then, usually within 2 days, I start to feel bad again and I

get really discouraged.

I need to rely on my positive outlook and determination (ornery?)to

get me through this, and it becomes difficult when I get frustrated

with a " relapse " . Even when I feel better, I still can't do much

more than an 8 hour day, which is hard to get used to. Walking up

the stairs from the laundry in the basement usually makes me winded,

and that's just not who I have been!

I made a drastic change in my diet when first diagnosed, including

becoming vegan. Because I have not gotten " better " yet, it has been

hard to maintain this level of discipline, even though I believe that

it will teach me things about my body, when it's in better shape, and

how to avoid irritating this condition. Again, feeling like nothing

I'm doing is really making any difference is frustrating and adds to

my feeling depressed at times about this condition.

But, I have a wonderful partner, a wonderful dog who loves me no

matter how much I'm moving or not, a wonderful doctor, a wonderful

extended family and friends, and this support group on the web!

These combine to provide me the kick in the butt when I need it, the

shoulder to lean on, and the stories to compare and hope for, or be

thankful that I can still pray for someone who is hurting in

different ways than I am. These are the things that help me get

through my days with RP.

Thanks for caring!

[Guest guest]

In a message dated 1/25/02 2:39:41 PM Pacific Standard Time, mmjw3@...

writes:

<< Walking up

the stairs from the laundry in the basement usually makes me winded,

and that's just not who I have been! >>

, this is hard for me too. I have a two story house and I only go

upstairs to go to bed. LOL Yes RP is like a rollercoaster. Up and down, up

and down. I guess we never get totally use to it. When I have a long stream

of good days, I'm always on the look out for the " down part " LOL I do try

to take full advantage of the Good days. My dr. doesn't agree with me there.

He thinks I over do it on the good days and that sets me back. Guess I'll

have to learn to slow it down on the good days. I just feel so good that I

want to do everything I haven't done in so long.

I'm really glad to hear that you have a great support team at home. That is

really important. I'm also glad the you found us. People just don't

understand what a great group of people we are. LOL Don't you wish everyone

could be like us in the group??? LOL

hugs