Ya'll are all so sweet..thank you

June 24, 2004

Wow! How kind of you all to respond to my pitfull little " ouch "

message! It really is encouraging to think we all " know " what it is

like to have this lupus " Stuff " . I have read many of the posts and

have to agree that the world in general think that we are

fine...that lupus is really not a big thing, and that we pretty

much " look " ok so we must feel ok. Also, I find that most folks

don't even know what lupus really is. OR folks think it is some

kind of weakness to be sick! Crazy, huh?

I wrote yesterday and accidentally thought I posted it and instead

deleted it...ha! Is that what is commonly known as " brain-fog " ? Hee-

hee!

I almost cried when I was reading some of the posts to me this

morning about getting myself organized and only doing what is

necessary while we feel bad. You know, is it just me, or does

anyone else feel ....uhm...well...guilty sometimes because we are

sick? I still beat myself up to keep a spic and pan clean home...I

do too much for my kids, I upkeep our home inside and out, try to

mow the grass and keep the pool clean and such...while being a good

mommy, wife, daughter, sister, friend, sunday school teacher,

neighbor, etc. You know what I mean. I am nuts...I have this desire

to have life as normal as possible without this " LUPUS " thing.

I have recently prided myself on evolving to a place of balance with

this lupus, but I know that really I am still trying to be 100%.

When I am not in a flare I just keep on doing...and then I fall to

pieces (health wise). WHAT AM I THINKING trying to mow my grass. I

must be insane. We have an acre and I dont know what I am trying to

prove. I know lupus has a mind of its own...but, do any of you all

struggle with this type of balancing thing. I always go by the

lupus rules (limit sun exposure, rest, limit stress, dont do too

much........) when I have a flare and after for a while, but then it

seems I feel better and I am sooooo excited to feel remotely normal

that I over-do.

Ok - now you all know, I am a newbie cuz' I have yet too stop

fighting the reality that I have lupus and it has changed things. I

need to embrace this new life and get with taking better care of

myself by empowering others to help me.

Thanks so much for just letting me talk (or type...)!

June 25, 2004

I hope you have an understanding family (unlike my family-excluding my

husband and my daughter). My mother complains to my husband ALL the

time saying that I'm lazy and I'm not really THAT sick to be sleeping

all the time. Like in other messages I have " posted " ...it's the

quality of life that counts. I am sick and tired of being sick and

tired...but I ALWAYS want to leave this painful world with the feeling

that I was a good mom; wife, friend, sister, etc. I want my children

to ALWAYS remember me and remember that I loved them. In a way this

disease is a blessing because you can stay home and give your children

a lot more attention then if you were working full-time, keeping the

house clean, cooking, etc. They will remember the times you sat with

them, the times you read to them, or even talked to them on a personal

level...they will remember. That's my biggest fear " to die and my

daughter won't remember who her mommie was or what she looked like. "

You HAVE to take life easy and if you don't your Lupus will definitely

remind you. Take care and keep strong.

Blessings,

In California

> Wow! How kind of you all to respond to my pitfull little " ouch "

> message! It really is encouraging to think we all " know " what it is

> like to have this lupus " Stuff " . I have read many of the posts and

> have to agree that the world in general think that we are

> fine...that lupus is really not a big thing, and that we pretty

> much " look " ok so we must feel ok. Also, I find that most folks

> don't even know what lupus really is. OR folks think it is some

> kind of weakness to be sick! Crazy, huh?

>

> I wrote yesterday and accidentally thought I posted it and instead

> deleted it...ha! Is that what is commonly known as " brain-fog " ? Hee-

> hee!

>

> I almost cried when I was reading some of the posts to me this

> morning about getting myself organized and only doing what is

> necessary while we feel bad. You know, is it just me, or does

> anyone else feel ....uhm...well...guilty sometimes because we are

> sick? I still beat myself up to keep a spic and pan clean home...I

> do too much for my kids, I upkeep our home inside and out, try to

> mow the grass and keep the pool clean and such...while being a good

> mommy, wife, daughter, sister, friend, sunday school teacher,

> neighbor, etc. You know what I mean. I am nuts...I have this desire

> to have life as normal as possible without this " LUPUS " thing.

>

> I have recently prided myself on evolving to a place of balance with

> this lupus, but I know that really I am still trying to be 100%.

> When I am not in a flare I just keep on doing...and then I fall to

> pieces (health wise). WHAT AM I THINKING trying to mow my grass. I

> must be insane. We have an acre and I dont know what I am trying to

> prove. I know lupus has a mind of its own...but, do any of you all

> struggle with this type of balancing thing. I always go by the

> lupus rules (limit sun exposure, rest, limit stress, dont do too

> much........) when I have a flare and after for a while, but then it

> seems I feel better and I am sooooo excited to feel remotely normal

> that I over-do.

>

> Ok - now you all know, I am a newbie cuz' I have yet too stop

> fighting the reality that I have lupus and it has changed things. I

> need to embrace this new life and get with taking better care of

> myself by empowering others to help me.

>

> Thanks so much for just letting me talk (or type...)!

>

June 25, 2004