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Thread: Hello.....new here

  1. #11
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    Steve - Howling mad disease; now I can save myself the co-pay for the rheumy

    Peri - face is okay today; just a little sore - maybe yesterday was a strange allergic reaction.

    Gizmo - exactly how it feels! Like the muscles aren't coordinated anymore.

    My biggest fear is that I'll get to doctor and she'll pat me on my pointed little head and tell me there's nothing wrong. And on THAT day at THAT hour, I will have no rashes, no joint pain, no swelling. Like when you take the car in for making a noise and when you take it in, the noise is gone.

    Ah well.....such is life (my life anyway). Enjoy the week end!

  2. #12
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    Hi Manderson,

    I glad your face is abit better...when i hear member's going out and covering up well and we have the summer here and i can't even enjoy it for just 10mins,my skin as gone past steriods and i'm banned from sitting in the shade just through a flare happening.

    I never had this fear like yourself and other member's are having because i saw my dermo who told me i had raynauds and said i'm sending you to the Rheumo department did'nt know what for at the time loads of questions about my past having seizure's, strokes, DVT, etc the list goes on from when i was 18 and now i'm 42 he took 11 bloods, then i went into the day unit another 9 bloods and x-rays, then his department again and another 12 bloods and apparentley i was born with it and it was inherited off my parent's and in the last 2yrs the Lupus/SLE as been going mad but i was lucky all my results shows as below in my signature, it took 6mths for the lupus to stop messing about and fluctuating to show i had Anaemia which i'd had years ago.

    When you go i really hope you can drop on like i did because there's so many member's still going now and having blood tests to see what will show, all through Lupus playing with the bloods and fluctuating them which can cause false reading.

    Enjoy your weekend Terry

  3. #13
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    Quote Originally Posted by steve.bryce View Post
    welcome manderson.
    yes you have howling desease.... you are mad. at least it is a dx.

    that is the way many of us feel, why not join us.

    my handwriting isnt crap.... it is non existant.
    all of my fine motor skills have disappeared. and i have fibro as well as lupus.
    I have fibro too and some days i am not sure which is worse.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  4. #14
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    Quote Originally Posted by Manderson View Post
    Steve - Howling mad disease; now I can save myself the co-pay for the rheumy

    Peri - face is okay today; just a little sore - maybe yesterday was a strange allergic reaction.

    Gizmo - exactly how it feels! Like the muscles aren't coordinated anymore.

    My biggest fear is that I'll get to doctor and she'll pat me on my pointed little head and tell me there's nothing wrong. And on THAT day at THAT hour, I will have no rashes, no joint pain, no swelling. Like when you take the car in for making a noise and when you take it in, the noise is gone.

    Ah well.....such is life (my life anyway). Enjoy the week end!
    I really hope that doesn't happen to you but, if it does, know that you are not alone! So many of us (myself included) went through that time after time. I will just keep my fingers crossed that you end up with a great Rhuemy and that all goes smoothly!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  5. #15
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    Hello Manderon,

    Hows your skin feeling today besides yourself in general??

    Terry x

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    Hey Peridot.....I'm okay; how's about yourself? No problem with the face today except where I was scratching like crazy is now like a dry patch.

    Today was actually a good day. Knees aren't giving me fits like they were in the last week or so. Hands and wrists are still achy. Yesterday at the grocery I was handing my husband something and dropped it. Luckily it wasn't a glass jar - only toilet paper.

    How's everyone else doing today?

    Manderson/Marie

  7. #17
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    Hello Marie,

    Well i am glad it's gone to a patch, mind you the skin trouble can send you soft sometimes you feel like your in a scratching frenzie.lol

    I get the knee trouble daily and i pop outside of a morning with my first cuppa and the fresh air seems to carm them abit but refering your wrists and hands i know what that's like...from one day till the next you never know what's coming on or how bad.

    The last few days my liver as been hurting me bad as they've found a tumour on my liver now and i'm having to drink water which i can't stand one bit but if i don't i get in a bad state of dehydration badwith my organs.

    Nice to know your feeling abit better.

    Luv Terry xxx

  8. #18
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    Terry! What's the prognosis on the liver tumor? I'm sorry to hear this.

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  10. #19
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    How did I get "sea monkey" status?

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    I won't know what they're going to do till the 23rd August as my appointments only just arrived but it's on the left side of my liver collecting blood and i've just started plaquenil again because the specialist's are saying that my immune system needs surpressing because of my organs and the SLE but i've got a stubborn rheumo as other specailist's want me on methotrxate and my dermo wants me on Dapsone tablets as they both work together because i've gone past steriod based creams and i'm banned from the cold with my raynauds going out and it's summer here andin the shade within 10mins i'm bad, so he's told me to keep in doors...it ah half a pleasent life Marie and thank you for asking. xxx

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