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Thread: another newbie

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    g'day everyone , I contracted a nerve syndrome called rsd 4 years ago that set the wheels in motion for scleraderma followed by my recent diagnosis of SLE , I have read a few of the posts here and it seems I do have a lot of he symptoms you all have , rash over face sun sensitivity ,tight skin, itchy skin , inflamed joints and tendons ,fatigue , muscle weakness ,skin sensitivity , vision problems , hair falling out etc etc , I live in australia , and we are just coming into summer now and I am dreading the heat it seems that all my symptoms exagerate them selves in the heat of summer ,but then again in winter the reynauds kicks in pretty bad to so I guess it doesnt really matter what season we are in extreme temperatures are no fun , I am coming up to 56 years of age but due to the scleroderma I only look like I'm in my late forties and getting younger looking by the day !!! lol well thats me , I look forward to getting to know you all hugs georgie

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    Hi Georgie,
    Just wanted to stop in and say hello. There are a lot of really wonderful people in here, you'll see. I look forward to talking with you and getting to know you.
    Robyn
    live, love and laugh often.

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    Hi Georgie,
    Welcome to the site. This is a great site with a lot of really nice folks with a lot of information. My name is Kathy and I will be 50 in December. I have SLE, Lupus and several other auto-immune disorders as you can see by my signature. I look forward to getting to know you and hope that you keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  4. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and Welcome Georgie :lol:
    I'm glad that you found us and that you decided to join us. Please keep reading the posts in these forums; they are very informative and will probably answer most questions that you have. If not, please know that everyone here is more than willing to answer your questions, research information for you, and share experiences with you.
    You are correct about us suffering from summer sun as well as winter's cold. It is frustrating at times, I know. In the hot summers, my Raynaud's is still active, so I have to sleep with a heating pad on my feet and an electric blanket (in summer temperatures in the 3 digits!). You can only imagine what I have to do to stay warm in the winter!!!
    You are amongst people who understand and who truly care. Once again....Welcome.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    thanks coltsfan,kathw and say susie for the welcome , I think I really need to be here , I think that the best way to combat this syndrome is to understand it , you know that old saying "know thy enemy" well I figure I need to educate myself on it and learn its traits so I have a better chance of learning to live with it ..... hugs georgie

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    I totally agree. I checked out every book at our local library and went on the internet looking for more information. That's when I found this site. It has been a wonderful source of information, support and friendship. Some of these guys should really consider writing a book. The language they use is so much easier to understand than some of the books by the 'professionals'.
    Robyn
    live, love and laugh often.

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    I am and ardent advocate for Lupus patients to educate themselves, their loved-ones and even, sometimes, their health care providers. So you are absolutely right about educating yourself and we are here to help you do that as much as we can!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Georgie..

    Welcoming you with open arms..hugs...

    Yes, education is key..through a book, your experience, another's experience. I am always learning, especially from here.

    Saysusie is our source, our book of reference, our walking text and a wonderful friend....

    Looking forward to reading more of you, Georgie...

    Be well,
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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    Hi Georgie..

    How goes life...checkin' in on you?

    Keeping well, I hope.
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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    g'day oulwa , funny you should ask me how I was doing today ,as my anwser is terrible ! I'm in a bad flare at the moment due to my hellish trip to my doctors appointment yesterday , because I cannot drive any more I had organised a lift to the hospital by a volunteer organisation that drive disabled people to medical appointments ,its a great system BUT yesterday I had a driver whos cars air conditining did not work and it was a hot 30 degree day the trip took three quarters of an hour , the sun was beating down on me thru the car wind screen all the way I was so so over heated I got a headache I was flushed by the time we got there , feeling real sick when I got into the hospital I went to the desk and the nurse said oh dear we shifted your appointment to december 4th !!!!!! didnt you get a phone call to confirm this !!!! I was so angry !! so headachy so nauseaous and so fatigued , all I could do then was brace myself for another three quarters of an hour baking in this hot car , when I got home I was so distressed from the heat I started to vomit and to make matters worse my nose started to bleed , I was a mess I knew it was all heat distress so I got into a luke warm shower still with a blood nose and dry reaching , eventually things settled once I cooled down , I layed on my bed and woke up 13 hours later !!!! so that was my doctors visit , oh the nurse appologised for forgetting to ring me to tell me she had moved my appoinment but after my experience I'm afraid her appology is not acsepted hugs georgie

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