my suggestion

[Donna Marie]

mine would be:-

PUT YOURSELF IN MY SHOES AND KEEP SMILING!!!

Just because people can't see SLE doesn't mean that we're fine, every day i wake up with a different pain, and that's pants.

[teabellyjules]

style_emoticons/<#EMO_DIR#>/wavey.gif

One of my favourite sayings is "Walk a mile in my shoes"

Love and hugs
Jules
XXX
Ps I'm not diagnosed yet so maybe my sayings will change in time?

[rwb200]

How about No Mother I'm not fine now.
This did not go away just because I look a little better.

[Vida]

two of my favorite sayings are:-

just because i look well does not mean i do not feel lousy.

pushing myself will not help the fatigue to go away.

style_emoticons/<#EMO_DIR#>/foryou.gif

[somerset]

<div class='quotetop'>QUOTE(teabellyjules @ Oct 23 2005, 06:32 PM) Quoted post</div><div class='quotemain'>
style_emoticons/<#EMO_DIR#>/wavey.gif

One of my favourite sayings is "Walk a mile in my shoes"

Love and hugs
Jules
XXX
Ps I'm not diagnosed yet so maybe my sayings will change in time?
[/b][/quote]
style_emoticons/<#EMO_DIR#>/hyper.gif Hello everyone

Spent a year, smiling and telling people at work I was "fine" when I felt horrible, finally talked truthfully to my specialist nurse and am now taking anti-depressents - don't make yourselves feel worse by hiding the truth from people, what we have is real and it can transform your life. Infact when I was first diagnosed I wouldn't say I had SLE as no one would have heard of it, but now I do, so my answer when people say I look well today - I have an autoimmune disease called System Lupus ...sorry for harping on I am having a bad morning.

Keep well

Jules

[chantal]

dito on that style_emoticons/<#EMO_DIR#>/wink.gif

[Stephie_Anne]

<div class='quotetop'>QUOTE(chantal @ Nov 1 2005, 07:08 AM) Quoted post</div><div class='quotemain'>
dito on that style_emoticons/<#EMO_DIR#>/wink.gif
[/b][/quote]

short and sweet, love it, but everyone of you is right, nobody can relate to how we feel unless they have the illness themselves,
for a while i was ashamed of having SLE becaue i was different and plud i didnt have a clue what was bothering me, but now "touch wood" its in remission and i can carry on.

but my saying would have to be ....

someone saying oh dont you look good and heathly these days.
me: oh if only you knew big smile. style_emoticons/<#EMO_DIR#>/halo.gif

[LupusCat50]

When asked how I am by someone just being polite, they get a "I'll do".

If it's someone who really cares, I'll be honest and say how I'm feeling "tired, in pain, or weak etc". Some days it's "Just Peachy". style_emoticons/<#EMO_DIR#>/flowers.gif

[specialk16]

I would have to say, "no, eating more red meat won't help, and no taking that herbal supplement won't help... if it were that easy, there wouldn't be so many of us still ill with this disease." Everyone always has their own take on how to help me with this illness, and all it does is irritate me. style_emoticons/<#EMO_DIR#>/tantrum.gif style_emoticons/<#EMO_DIR#>/hissy1.gif

[Kathlupus]

style_emoticons/<#EMO_DIR#>/hide.gif What I feel like saing to My boss is that I am unlike any other here. That I do have a autoamunine disorder do get sick more offten. But can still do my job very well 9 hours a day when Im there. Resolution? write back if you have the right words to say this from a 26 year old's mouth to her laid back 3o some year old boss. PLEASE HELP ME style_emoticons/<#EMO_DIR#>/halo.gif


Thankyou style_emoticons/<#EMO_DIR#>/foryou.gif

[shew]

<div class='quotetop'>QUOTE(specialk16 @ Nov 8 2005, 12:03 PM) Quoted post</div><div class='quotemain'>
I would have to say, "no, eating more red meat won't help, and no taking that herbal supplement won't help... if it were that easy, there wouldn't be so many of us still ill with this disease." Everyone always has their own take on how to help me with this illness, and all it does is irritate me. style_emoticons/<#EMO_DIR#>/tantrum.gif style_emoticons/<#EMO_DIR#>/hissy1.gif
[/b][/quote]


I HATE this too!!! I am SOOOO tired of people giving me or sending me all this junk on all of these herbal or dietary remedies that are supposed to "cure" lupus or make you feel better. If this stuff really works, then why don't all the great rheumies out there suggest this stuff??? How do you respond to these people? I have one relative that every time I talk to her tries to push some holistic remedy on me. She's as sweet as honey, so I have the hardest time trying to tell her I don't want to hear it any more! The funny thing is, she uses all of this holistic stuff to keep herself, husband and daughter "healthy," yet as far as common colds/flu her family is sick more than my faimly! Grrrr... How do you politely tell these people (without harming the relationship) to STOP with their "remedies" and research, especially knowing they are trying to be nice and watch out for you?? Drives me crazy....... style_emoticons/<#EMO_DIR#>/wacko.gif

Do you ever feel like your friends get tired of hearing that you are not doing well when they ask, "how are you doing?" Sometimes I give a generic, "hanging in there" b/c I'm worried that friends will feel that I'm complaining all of the time if I tell the truth every time they ask (since I never seem to feel well)!

My first post here... I hope I did this right!

[mandynor]

Lately when people say.."you look so good!" I just reply (with a bit of attitude to get them thinking...)

"so do you!"

people don't really know how to respond to that...but it makes them think a little about what they said to me, I think.

style_emoticons/<#EMO_DIR#>/flowers.gif
Mandy

[Jigs Wife]

I like that one Mandy!!! Will use it myself if you don't mind. style_emoticons/<#EMO_DIR#>/tongue.gif

[sunladyb]

When people have asked me how I am recently I have told then same rubbish different day style_emoticons/<#EMO_DIR#>/tongue.gif

Love Dawn

[Knitter]

Hi all

What gets me is the "why don?t you JUST try raw food, meditation, reiki, etc etc etc. If I there was a simple thing I could JUST do, wouldn?t I have done it already???????

Take care
Knitter