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Thread: New To the Group - SLE

  1. #1
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    Default New To the Group - SLE

    Hi, I've been feeling the need for support and sharing lately and went on the hunt for some place... I was pleased to find We Have Lupus.

    I was diagnosed with systemic lupus in 1986 right before I turned 16 after having health problems for many years.

    I've been on prednisone and plaquenil the entire 23 years along with all sorts of other drugs over time.

    So I'd just like to say hello and I'm looking forward to getting to know everyone.
    Last edited by AChronic; 05-12-2009 at 02:47 AM. Reason: crazy smiley jumped in there!

  2. #2
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    Default hi

    Im laughing at you cause you edited cause the 'crazy smiley jumped in'...bet you got this one .We all do it too!!
    Welcome to this site.You will find all te support you need right here.We will all try and help,support,make you giggle.Ask anything! Hope today is a good day for you.Glad you found us.
    love
    Angel.xxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  3. #3
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    Default

    hi achronic,

    welcome to our group....i can tell that you are going to fit right in.....we address serious situations/symptoms, but we also have a few laughs along the way. An occassional giggle helps all us feel better.

    so sorry that you have been dealing with this thing for so long, and starting at such a young age, but i am very glad that you found us....come and sharewith us, we are a great family.

    we have other members from Portland, so you have friends not too far away.
    Phyllis

    share a smile today

  4. #4
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    Default Welcome

    You will find support and answers to your questions on this site.
    We are here for you. anything you need.

  5. #5
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    Smile

    Hello Achronic....

    Just stopped by to welcome you! Glad you found us. I'm the other member from Portland that Mountaindreamer mentioned. What a great surprise! I read thru your post and didn't even see the 'Portland'....then read Mountaindreamer's comment....scrolled back up and sure enough, was delighted to see you're from Portland. There are a few others from around Oregon..Bend, Grants Pass, Klamath Falls....but I haven't connected with anyone from my neighborhood.

    I'm Lori and our stories sound a bit similar. I was diagnosed in '82, at age 18...so it's been 27 years for me. All 27 I've spent on Prednisone and quite a few years on Imuran also. I've been blessed to be in remission for about 15 years and counting and I've been tapering very slowly off the cortisone. I'm finally, unbelievably, taking only 1 mg. per day, and hoping when I see my Immunologist in June, I'll finally be able to get off it completely. I never thought the day would come.

    You've found a great place to find understanding, support, and lots of helpful information. There's a wealth of knowledge here and a very compassionate group of members. Again, I'm glad you joined us and look forward to getting to know you better.

    Fondly,

    Lori

  6. #6
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    Default

    LOL... that was the exact smiley I got, it cracked me up. I was smiling but I wasn't rolling around! haha.

    Thanks for the welcome!

  7. #7
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    Default

    Thanks for the welcome.

    I have to say that for me, a sense of humor is a must. It's helped me over the years to cope. I'm glad it's something I've been able to hold on to.



    Quote Originally Posted by mountaindreamer View Post
    hi achronic,

    welcome to our group....i can tell that you are going to fit right in.....we address serious situations/symptoms, but we also have a few laughs along the way. An occassional giggle helps all us feel better.

    so sorry that you have been dealing with this thing for so long, and starting at such a young age, but i am very glad that you found us....come and sharewith us, we are a great family.

    we have other members from Portland, so you have friends not too far away.

  8. #8
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    Default

    Thanks for the warm welcome!

    I've had a rough time finding an active lupus support forum. This one looked like it was hopping! And just struck me as warm and welcoming. Looking forward to participating.

    Quote Originally Posted by gina View Post
    You will find support and answers to your questions on this site.
    We are here for you. anything you need.

  9. #9
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    Default

    Nice to meet you Lori.. My name is Andrea and I live in North Portland in the St John's area.

    Congratulations on your remission and on your low dose of prednisone! That's amazing. I can really relate to how difficult it is to get to such a low dose and be able to maintain it. That would be so great if in June you'd be able to go off it completely. I'll keep my fingers crossed for you! The lowest I've been on is 2.5mg and that was more than 10 years ago during my college years and the only long term remission I've had. Right now I am on 4mg and I'm so excited about that. My lupus has been very active for the past 7 years or so and I am now on ss disability because of it. But being able to cut back to 4 after so long feels like a great accomplishment somehow.

    I have also been on Imuran in the past. Also methotrexate, cytoxan and at the moment cant remember what else! lol my memory stinks these days.

    I see a rheumatologist out of Adventist medical center after going through a few. He is a perfect match and one of the best doctors I've ever had.

    Good to meet you. I look forward to getting to know you also and everyone, seems like a great place!


    Quote Originally Posted by Rastagirl View Post
    Hello Achronic....

    Just stopped by to welcome you! Glad you found us. I'm the other member from Portland that Mountaindreamer mentioned. What a great surprise! I read thru your post and didn't even see the 'Portland'....then read Mountaindreamer's comment....scrolled back up and sure enough, was delighted to see you're from Portland. There are a few others from around Oregon..Bend, Grants Pass, Klamath Falls....but I haven't connected with anyone from my neighborhood.

    I'm Lori and our stories sound a bit similar. I was diagnosed in '82, at age 18...so it's been 27 years for me. All 27 I've spent on Prednisone and quite a few years on Imuran also. I've been blessed to be in remission for about 15 years and counting and I've been tapering very slowly off the cortisone. I'm finally, unbelievably, taking only 1 mg. per day, and hoping when I see my Immunologist in June, I'll finally be able to get off it completely. I never thought the day would come.

    You've found a great place to find understanding, support, and lots of helpful information. There's a wealth of knowledge here and a very compassionate group of members. Again, I'm glad you joined us and look forward to getting to know you better.

    Fondly,

    Lori

  10. #10
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    Default Joining in

    on the welcome. This is a great place to find support. As you will see, the sense of humor fits right in. Helps many of us make it through the day.

    Glad you found us.

    Jana
    Life is measured not by the breaths we take, but by the moments that take our breath away.

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