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Discussion Starter #1
On the St Thomas' Foundation Website. Patients' Stories

http://www.lupus.org.uk/article.php?i=311

That photo of me is one of the grimmest ever.:eek:
My DD rushed in one morning without previous notice with a 'few minutes to spare' to take photos without make up for the article that was in the Newsletter. I had been asking her for weeks and the article deadline was already gone. I asked for one of me made up, "Well OK", but "be quick, very quick" So what usually takes 15 mins took about 15 seconds. I am going to see if I can get it changed for a more flattering one. ( No comments please !

I will put the ones of my lupus skin on my Album when I can remember how to do it. They are really scary :lol:

All the stories are well worth reading

:)

Clare
 

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Hey Clare :) the photo's not that bad and it's nice to put a face to the name.

Katharine
 

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HI Clare,
I think the photo is very nice.
And a great story.
Good for you.

Well Done.
It will do others good to read it

Take Care

Cassie
 

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Well done Clare!

Its lovely to read your story and all the others. I havent got through them all yet but Im diligently ploughing my way...

I know you said no comments but I couldnt resist. Thats a lovely photo. I know from looking at my own photos how much I hate them but its amazing the things we see in our images that others dont even notice. Your hair is extremely similar to mine except Im completely white at this stage. ;)

You have very kind eyes by the way but dont tell anyone I said that!

Well done again!

Luv n stuff
Joan:rose:
 

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Hi Clare,:)

You had a very good story. I enjoyed reading it.

You look very nice in your photo too.
I think we all feel that way about our pictures taken. I hate any pictures of me.

Love,
Lyn
 

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:bigsmile: Clare!

Hello and nice to finally put a face to the name and chats we have had! :lol:

Great article and it's good how you slipped in all that educational material ;) to get the word out!

Now when is this photo album coming to fruition?

love
Lily
 

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Clare, you're beautiful! And I finally know all of your story. I agree with Lily that's it's wonderful to finally put a face (and a lovely one at that) to the person with whom I've had wonderful chats.

Maybe someday I'll be brave and post a photo of myself. ..... Maybe not.:lol:

Hugs,
Sunny
 

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Dear Clare, as you know I had already seen this and thought it very good.
My understanding of Discoid is not good, so you certainly educated me and Immi,
she was shocked by what you have endured.

I think it takes bravery to tell your story.
Well Done,

X Lola
 

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Clare:

It was so good to "see" you again! I hope you are well, I loved your story!

Stephanie
 

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Hi Clare,

I too read this in the St. Thomas newsletter but even better that they put it on the website. Well done you for putting your story in print. :foryou:

As for the kind eyes - I think Joan is after something :lol:. Honestly, you look great!

Hugz, :hug:

Pam xxx
 

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Hi Clare,

Thanks for sharing that, it was so interesting to read.

It's good to know what you look like as well - I shall be able to look out for you in Sutton! ;)
 

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Hi Clare

I too read your story in the st thomas' newsletter but I just want to say congratulations again and well done to you! :bow::thumbs:

you look lovely clare, I agree with joan you do have kind eyes! when I first saw your picture I thought you looked kind & genuine :)

hope you are keeping well.
love karen x

p.s so much for your no comment wishes clare :rolleyes: aren't we awful :eek:
but it's only because we care :)
 

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Clare,:hug:
I thank you for your story:) Your picture looks great and now there is a lovely face to go with your name. Even if I knew how to post pictures, I am not brave enough to put my mug up:lol: Right now my face looks like a tomatoe:( It seems to always get worse in this weather, no matter what I do.



Thank You,
Becca
 

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Dearest Clare,

It is very nice to finally meet you! I enjoyed, your well written, and very educational piece.

I am very sure, it will help so many people, that have no idea, about the many types of lupus.

Well done!

I want to tell you also, that I think you are a very nice looking lady. I know..I always feel better, with my make up on also, but..I really don't think other's take notice, the way we think they do.

I think your a lovely person, both inside, and out Clare! Thank you, for all your hard work, and time you put in on this site..helping so many of us.

Love you,
Sandy

A red rose for you Clare..
:rose:


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Discussion Starter #17
Thank you all for your kind comments and generous spirit.

Lola please tell Immi I am really sorry she was shocked if that means she was upset by the pictures without make up, in the Newsletter. Hugs for Immi. Please tell her I am OK with it nowadays. In fact I feel objective about it having seen my own lupus face as a slide in a professional lecture given by my doctor, before treatment and after.
I did wonder how I would react to that but it was fine and I liked to think that it was educating other doctors.

I myself am shocked when I see some of the pictures on the lupus skin picture sites. Not only because of those people's suffering but because almost certainly they would not have got to such a bad stage if they could have accessed timely effective treatment. Angie chose not to put the most severe pictures into the article and commented to me how grim they were. I wondered vaguely if she would have rejected mine before treatment as not fit for the general public.

Somehow this amuses me in a puzzled way.
People can write about how ill they are which can't be shown in pictures. Of course we know all about the ravages of systemic disease and we comment how other people don't understand invisible illness.
What's going on inside that can't be seen is really much more horrifying when you think about it, but lacks visual impact.

Anyway that's enough of my rambling ruminations.

Hugs to All
Clare
 
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