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  • #16
    Originally posted by POPEYE View Post
    Thanks for that Toby, she will be very interested in the website, she dosen't use the pc much but i will endevor to help her join/ post etc any questions/remarks she may want to add, we did find the seminar very helpfull in actually understanding the disese, caused if i remember by the bodys "own" anti bodies or too many of the wrong sort, she was diagnosed several years ago, after being diagnosed with osteo and rhumatoid arthritis in her thirtys, then after a fall about seven years ago in which she badly broke her wrist they found she also had osteo porosis (brittle bone), then as if all this wasn't enough they found she had parkinsons as well, so were thinking wtf next?
    i guess you could class youself as "special" Toby, as it's useually women that get lupus, (think the average they quoted was 1 in 10 sufferers would be male) a guy gave a short but very moveing talk there on how lupus affected his life and this was his outllook on life, turned it into a positive thing and now is very involved in seminars etc,
    anyway thanks for the web link mate, apprecieate it, all the best, ian
    Hey Ian...
    wow what a road your wife has had......
    My thoughts are with her.... I hope she has more good days to come now that the weather is picking up..
    Yeh I hope she will find the site useful..
    Yeh I know Rather not be special tho.... lol altho I would have never founded the site...
    I might go to one of them seminars sometime and see what they are like....
    One day at the time I guess..

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    • #17
      Originally posted by TobyJug View Post
      Hey Ian...
      wow what a road your wife has had......
      My thoughts are with her.... I hope she has more good days to come now that the weather is picking up..
      Yeh I hope she will find the site useful..
      Yeh I know Rather not be special tho.... lol altho I would have never founded the site...
      I might go to one of them seminars sometime and see what they are like....
      Your local health athority (if their running these seminars) should automaticly send you an invatation, or failing that give em a call and ask,
      the one we attended was very good, as i said an all day do on a saturday from 9.30 am to approx 3.30-4.00 pm, free drinks and a very good buffet lunchtime, had plenty to eat, also there were free dematology (?) creams and skin moistureisers etc, and if your up to a little public speaking i'm sure you would be made most welcome to talk about your situation etc, dont worry mate it's was quite informal and the guy that talked at the one we went to to was no public speaker, he just told it like it was, how it affected him, his family, his work, (he was/is an engineer, but had to reduce his work as and when his lupus flared) must admit i had watery eyes at the end of his talk,




      Yoshe! thanks for that info mate, very very interesting, i will get my wife to read it when she get up, (always has to go to bed in the afternoon as she's always knackered by then), she always drinking cans or squash, always thirsty, so it you post made me wonder, cheers, ian
      Too young to die and too old to give a toss

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      • #18
        Originally posted by POPEYE View Post
        Your local health athority (if their running these seminars) should automaticly send you an invatation, or failing that give em a call and ask,
        the one we attended was very good, as i said an all day do on a saturday from 9.30 am to approx 3.30-4.00 pm, free drinks and a very good buffet lunchtime, had plenty to eat, also there were free dematology (?) creams and skin moistureisers etc, and if your up to a little public speaking i'm sure you would be made most welcome to talk about your situation etc, dont worry mate it's was quite informal and the guy that talked at the one we went to to was no public speaker, he just told it like it was, how it affected him, his family, his work, (he was/is an engineer, but had to reduce his work as and when his lupus flared) must admit i had watery eyes at the end of his talk,
        I did have an invitation once but I never went.... just u saying it was good makes me think I should go and attend to one....
        One day at the time I guess..

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        • #19
          Done the signing thing and read the post about aspartame, my own wife suffers disability and drinks massive amounts of this shit ever since we met, 1987, must look further into this, thanks. H

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          • #20
            Done.

            With pleasure, a worthy cause.

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            • #21
              done

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              • #22
                will 2mrw Tobes. Batteries have gone in keyboard an i cant find anyothers. Phone 2 much a pain in the ass 4 links. Hope u 4 are all doin ok.
                How can I be lost when I've got no where to go

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                • #23
                  All done, hope it does something to help.

                  Gman.
                  If it aint broke, keep goin' till it is.

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                  • #24
                    Thanks again everyone...

                    oh and Bibs.... No worries, all well here how are u? well too I hope....
                    One day at the time I guess..

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                    • #25
                      Done
                      Remember arrows are silent.....................
                      Don't forget to tell everyone its indestructable as seen on top gear.......

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                      • #26
                        Done - let's hope we can help make a difference

                        I used to be a nurse and have seen the misery Lupus causes
                        Save earth...it's the only planet with chocolate

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                        • #27
                          Thanks Paul...

                          Originally posted by Trinity View Post
                          Done - let's hope we can help make a difference

                          I used to be a nurse and have seen the misery Lupus causes
                          Thanks Trinity...
                          Yeh it is not the best thing in the world to live with.... I have just started a site with a forum about Lupus to offer support and information...
                          All the papers have received an e-mail today to try and get the site in the news to raise awareness....
                          One day at the time I guess..

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                          • #28
                            Sorted.
                            How can I be lost when I've got no where to go

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                            • #29
                              And another, hope it helps.
                              I'm a custard donut monster

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                              • #30
                                All done

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