I’ve been reading a lot of posts lately from frustrated people who just can’t take it anymore. I fall into this category. Since last November, I’ve been out 5 or 6 times – if going out with the family that suppresses you is considered a social event, then one of those times was such an event. I live in a horrible place, the temperature in last ten days hasn’t dropped below 40 Celsius and even if I could go out there isn’t much choice – everything around here, especially the people, just make me sick.
Anyway, let’s have some fun (away from the sun)…
I am sure that the person responsible for naming the disease did not suffer from it. Wolves are intelligent, social creatures and most of all, effective killers while this disease is a slow, lonely torture. So, what would you name it?
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SRamkin
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They say it is called lupus because people with lupus look like they've been mauled by a wolf. When i developed subacute cutaneous lupus, i had what looked like a wolf bite on my neck. A big clue for the doctors, but they didn't cotton on.
That Christmas my daughter bought me a twilight calender because i could no longer go out in the sun. She even dragged me along to see the film. I'm not so sure i like the link to vampires but i do like the words, twilight and eclipse. They spell out what the world is like for some of us who have lupus.
Hello ... I did have a little giggle when I read this ... then the reply! One of my l work colleagues - a really nice one- has decided I too am a vampire! But not an ordinary one - a sparkly one ... from the prairies .... he said the clues were the film that I had to have put over my office windows , he spotted a 50+ cream, but he said what really did it was the Hollywood starlet look of HUGE hat and glasses (to hide my true identity) ..... when I am not on par I get really pale and he always asks if he can go and get me some blood to drink! Must say, I do like the humour as it is done with compassion and a wink. As for a new name ???hmm I have lived with the original for soooooooooo long that I will need to think about that one ..... although the description for wolf is pretty accurate as we are intelligent (how do I handle this???), social (let me educate you) and effective (any positive result of action) - those qualities are what we need to deal with this ... ah-woooooooooooo .... xx
I have a collection of hats i wear depending on the mood i'm in. I get a few looks when i'm dressed head to toe, big hat, sunglasses, but as the doctor said "you have lupus, they don't".
Not sure whether we should be in team Edward as he is sun sensetive or team Jacob as they are werewolves, but i do wish i had some of their strength.
However, I was referring to the disease, which I consider stupid and can turn a social person into a homebound, frustrated beast (like me, yes, I do get up on the roof howling some nights – yet none of the neighbours dared to complain…).
Now what to name it let me think. Will have to get back to you (if I remember) brain not working properly, but I could think of some but would not be allowed to write them. Bettie
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I just want to say... 
Just diagnosed Lupus today 
Just a quick question
Just diagnosed with Sjogren's and the Hydroxychloroquine doesn't' like me 
