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Discussion Starter #1
Maybe I'm just hypersensitive to people's daft comments at the moment, but over the last few weeks I've had one person ask me if I'm 'on the change' (I assume she's referring to my inflamed red cheeks), er I'm only 36, and another person tell me how hot my hands are (that'll be the inflamation that's keeping me awake at night) after I'd used their mouse. I think I'm starting to develop a sense of humour about such things, but feeling a little tender about it at the moment. Guess if you didn't :rotfl: you'd :oops:
 

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Yep, people do say the silliest things :hug:

I can understand that people don't understand. I can't possibly explain it in simple terms and honestly wouldn't have understood myself before having to deal with all this but I have a simple rule "If you have nothing nice to say, be quiet".

Of course, as many of you know, I'm pretty blunt and I'll tease and joke along with the best of them but I really have to know someone before I'll do that.

On the other hand, I also know that I get sensitive about stupid things. I had to stop myself the other day from replying to someone who had written "Oh, how awful it is to have to go to work on such a lovely day" (not here). Perfectly innocent statement but I almost replied "Oh how I would love to be able to go to work on any day!!". Thankfully common sense got the better of me :hehe: and I refrained from starting the fireworks off.

If people make comments when I do have a rash (rarely now), I just say "oh, it's the aliens fighting to get out!". Mostly they don't - sometimes I actually think it's worse when they don't but kind of shy away from saying hello in case they catch something (in Belgium people kiss on the cheek to say hello).

I hope you'll be feeling a whole lot more cheerful soon,
hugs :hug:

Katharine
 

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I grit my teeth when someone say's have you been in the sun? You have such great color (we live in Florida, and even shade makes my butterfly unfurl her wings)

Or people say have you been on a diet, you have lost weight and you look great...I'm nauseous most of the time and barely eat so yes I have lost a few.

The kicker for me is always...you must be better you look great...

But I too smile bite my tounge and say...retirement agrees with me...Gosh I wish I could go to work to Katharine it would give me something to distract me all day.

Stephanie
 

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The Other Illinois Tammy
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Ali,
It sounds like you are coming around to the fun side of lupus. You get to make jokes and it's always funny to put a normal in their place. Ok well maybe not their place but for those that don't get it the look on their faces is often all I need to feel a little better. You can always reply about the change of life as Oh that is a little personal but I do have lupus. If the mouse is hot tell them it was only because you were thinking of last night with your hubby lol that one always gets them. I know it can get old but it can be fun too. I hope you are feeling better as you are a funny person.
 

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Hmmm ... I know how you are feeling. I'm on one of those myself at the moment.

It is fair enough not to understand these conditions. I imagine many of us were the same before we got diagnosed and read up a bit. I knew nothing about lupus before diagnosis - thought it was a type of arthritis.

What does my head in is the usual - 'you look well comments' and advice re. 'cures' that are out there ... usually offered by people who have not bothered to read up on the condition before throwing some 'horse poo' nugget of useless information in your general direction without so much as a thought about whether or not you have enough grey matter to read up on the subject yourself.

I was recently told i probably had artificial sweetener poisoning (aaaaw - not that one again!) This, irrespective of the fact that I do not even use artificial sweeteners. I had told the person concerned what I actually did have and the same person carried straight on telling me how my symptoms were exactly the same as the sweetener thing.

She was extra ordinarily clever, since I don't even recall actually telling her my symptoms ... and she certainly never asked :rotfl:

Sometimes we just have to face it - there are some people out there who are just born very, very clever. We can only aspire to develop that second brain cell with which to strike the first so that we can spark so brightly.
 

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Pollianna
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The worst one must be my doctors, after yrs of trying to get me to swallow that what was wrong with me was depression. He actually said to me well at least you are well mentally :lol:
the mind boggles.

I get the "you look amazing" thing all of the time. I decline invitations to go clubbing as my knees are burning and people who invite me look at me in a quizical was as though I dislike them, that's a hard one :(.
 

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Discussion Starter #7
The best one I had from a doctor was when I had heart palpatations and a couple of VERY odd ECGs. After a trip to A&E, and my GP, I was referred to a cardiac consultant, had loads of tests, went back to see the consultant and he just kept saying come on how many Es do you drop. Cheeky ******. I know they're meant to rule out drugs, but I'm sure there's a slightly more elegant and professional way of asking.
 

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When people tell me I am looking good I have 2 different things I say. One is I say "it is called makeup." The other one is "if you could only see my insides, they aren't doing to well."

Usually though most people mean well. They are concern for us and only want us to feel better. You know hearing something positive is better than hearing "my goodness you look like a truck ran over you several times."

Love,
Lyn
 

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yep

or you look like 110yr frail old lady with 3 hairs on her head.lol

Scary or what lol
 
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