Right words to put our point accross

[sue90x]

Hi all,
I as some already know am in a bit of a state with the some of the medical proffession
-years after diagnosis !! style_emoticons/<#EMO_DIR#>/hissy1.gif

when 'they' say ''you seem to be fine'' etc we say ''and you 'seemed' intelligent''

I'm collecting for a good cause! and admit to finding that one somewhere else,

all keep well and out of the sunshine!-mini heatwave in UK! keeping me and lots of others Brits locked inside style_emoticons/<#EMO_DIR#>/sad.gif
its nice to see and hear children enjoying the sunshine though style_emoticons/<#EMO_DIR#>/goodvibes.gif
Suex

[pauline1946]

can you define--fine for me please?????

my dr.'s know i'n quick most of the time with come back's
so they always tell me<< you are doing pretty good for
the shape your in.>>, my responce to that one is
yea round is a shape huh.

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%">
My consultants words every single time when i walk in his room is
"and how have you been "
It wasnt until he actually said do u know you alwyas say "okish" i said do i !
he said yes....
i said well because i am not always bad...not always good but oksih ! sums me up !</span></span>

[AmandaB]

Hi Sue,

Not sure if this is the sort of thing you mean but here you go:

I saw an old friend the other day who asked how I was and said 'What? You're still ill?'

Well, y'know, if I could just magic a cure from somewhere........

Some people don't get the concept of long term illness
style_emoticons/<#EMO_DIR#>/tantrum.gif

Amanda

[Fishaholic]

Not sure about docs but here are some of my answers to the main most annoying comment IMO people say:
"Well you LOOK ok!"

When in a good mood: style_emoticons/<#EMO_DIR#>/biggrin.gif

Looks can be so deceptive.
Shame I don't feel it!
Wish the inside of me was as healthy as the outside!
One day maybe I'll feel as good as I look.
Unfortunately that's not what my scans and blood tests say.

When in a bad mood (this is what I'm tempted to say but obviously never do): style_emoticons/<#EMO_DIR#>/hissy1.gif

Really? I didn't know you were a doctor. (this doesn't work so well for me at work as I work in a university where we are all doctors, just not medical ones, lol!)
Gosh, you could save the NHS thousands of pounds. No more need for all those scans and tests I keep having.
And you look intelligent... (the sarcasm might be lost though) Edit: Ooops, sorry, just saw someone else already said that one...
So do patients with cancer (except I feel bad about that one having lost a friend to that illness)

I have only once said something I really regretted later. I once completely lost it with some poor man in a lift. I had a walking stick at this stage, but had just come out from my GP who had confirmed stuff with my EMG to do with my muscles which confirmed it was getting worse and that I would indeed in all likelihood continue to deteriorate. Plus I was in a mini flare. I was very upset. The guy said "What have you done to your foot then? Twisted ankle?". I rounded on him and said in a fast, low and probably scary tone, all in one breath "Actually I have an incurable autoimmune disease which is attacking my muscles, my joints and my brain. I'm soon going to end up in a wheelchair and I'm not bothering with a pension because I doubt I'll ever need one." The poor man didn't know where to put himself. A dead silence fell until we eventually reached my floor and I left. It was the longest lift ride of my life. I felt so guilty! Luckily I've never ever seen him again. style_emoticons/<#EMO_DIR#>/oops.gif



P.S. A possible answer to the above "oh are you still ill?" thing would be "Yep that is what in-cu-ra-ble means..." (with emphasis in slow and patronising tone on the word incurable)

[raggedyann1]

Many good lines have already been given.

Sometimes I hear that I am looking so much better, my response is
That healthy lupus blush will fool you every time.

I have also learned that many people simply don't know what to say to someone with a chronic illness. Some of my friends just want me to feel better so they look for anything that could indicate I am doing better. I often answer when asked how I am, that I am hanging in there. I like okish Christine
style_emoticons/<#EMO_DIR#>/smile.gif


Karen

[peonyprincess]

I hate going some place and running into someone I haven't seen in a while. It never fails they ask one of the following questions................my replies follow.


1) "Hi, how are you feeling?"........................................"With my fingers".

2) "My, you look great"................................................"When did you become an ostrich?"

3) "You look awfully pale, dont you get out in the sun?"............................................."No, I worship the darkness."

4) "Do you still have Lupus?".................................................. ......."I see the wizard never gave you that brain."


As you can see, I have a tendency to be rather sarcastic. I figure a stupid question of comment is an opening for a stupid comment. I realize that people do not always know what to say, but they should engage their brain before they engage their mouth.

Nancy

[themerms]

In general when someone who knows my situation asks how I've been feeling I say "I'm hanging in there". I don't want them to think I'm great because I'm not but I want them to know I'm doing the best I can.

When someone makes the common mistake of saying "well, you sound good" or "you look good" my typical response is "Better living through chemistry!" One big frustration is that when I am feeling okay or when I look good that I'm better or cured. What people don't get is that if I'm doing better it's due to the 15+ meds I'm on including an immunosuppressive drug which is nothing to take lightly.

Sharon

[lisade]

The is a great thread.

My latest response is: " well, you sound really good or you look good...I say, yep the chemo must be working"....that pretty much shuts them up.


or my your face isn't dropping anymore...."yep, it's so fat from the prednisone you can't tell"

[pauline1946]

my mom was a saint as far as being a lady goes, but boy oh boy
mess with one of her kid's you'll and wish you had'nt done it.

two seperate times when i got out of my car parked in a handi-
cap space 1st. one just flat out ask , AND JUST WHY ARE YOU
PARKING HERE? Mom told them my handi-cap was mental, and
i killed the last person that ask me that question.

2nd time she turned to me and said we need to hang a sign
around you'r neck with lupus in huge red letter's, and let
them spend the next week reshearcing it.

I still get thoese looks untill both knees, and hip goes out.
i had to use the wheelchair in walmart last week. i can
usually get through the store using the shoping cart to
lean on.

looks can be so deceiving

[LupusCat50]

I like most of you have a standard reply "I'm hanging on by my fingertips" or "I'm peachy". To those who know my condition, they can read it in my face. They can tell when I'm having a bad day because I can't hide it and I get lots of hugs, positive reinforcement etc.

I've just started using my handicapped parking permit. I really haven't had any questions yet. I also have used the mobilized carts in Walmart. After working all day on concrete floors in the hospital where I work, to go to Walmart and be in those uncovered flureoscent lights and their concrete floors, I really only make it about 5 minutes without being in excrutiating pain. I usually lean on the cart, grimace and pray that God just lets me finish and get back to my car. On really bad days, I use the mobilized cart.

Ah, the life of a Lupie!! style_emoticons/<#EMO_DIR#>/biggrin.gif

[sue90x]

wow theres some good responses here!
I've had an unusual question to deal with this week that might make some of you smile, here in UK we are having a mini heatwave it could be a summer its been so long since we had one I can't really recall! style_emoticons/<#EMO_DIR#>/ermm.gif

because of the wonderfully (unusally warm ) weather here I've spent even more time 'locked up in my house, fans on full blast I wouldn't be at all surprised if the house took off! style_emoticons/<#EMO_DIR#>/laugh.gif
my friend came to see me earlier this week, skipping rope in hand to play in the garden, shes 5years old now, my friend and her have come to hospital with me(met me after consultations) when shes seen me have lots of blood taken. she wanted me to go outside and 'play' too I explained to her as did my friend that I can't go out in the sunshine, it was midday with no escape from overhead full sunshine I've been feeling particularly bad for last few weeks, shes now told all her friends that her'Auntie Sue' IS A KIND OF VAMPIRE!!! out of the mouths of babes?! style_emoticons/<#EMO_DIR#>/laugh.gif style_emoticons/<#EMO_DIR#>/laugh.gif
take care all
style_emoticons/<#EMO_DIR#>/laugh.gif I had hosp yesterday and told the doc(neuro) when he asked how are you , my reply, I've been worse but I used to be better
Suex

[Lily]

style_emoticons/<#EMO_DIR#>/rotfl.gif

<div class='quotetop'>QUOTE</div><div class='quotemain'>AND JUST WHY ARE YOU
PARKING HERE? Mom told them my handi-cap was mental, and
i killed the last person that ask me that question.
[/b][/quote]

Oh pauline kudos to your Mum, I like her style style_emoticons/<#EMO_DIR#>/tongue.gif style_emoticons/<#EMO_DIR#>/rotfl.gif

love
Lily

[Fishaholic]

Forgot to say that when people used to say "how are you?", I always answered "fine". I decided this was pretty stupid, so my standard answer is usually "up and (very) down". The very depends on how bad things have been!