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    Default First time user.

    Hey guys, this is my fifth attempt trying to post a message. I don't know whether it's my computer playing up, but my messages are failing to post. If anybody can view any of my recent messages, could you please let me know. Okay... i'm from Australia, and i was diagnosed with lupus just over a year ago. I don't know anybody with lupus, and i would love to talk to somebody in my position. So if your up for exchanging stories, i'm waiting to hear from you. Thanks in advance.

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    hi joaney,

    first, welcome to our little family. there are so many people here from all around the world, so i call the forum our family of the sky.

    so sorry about your diagnosis, but this is a great place to share stories, and learn from each other. We are always here whenever someone needs that little extra encouragement, or if they just need a cyber hug.

    so sorry about the computer problems....i am horrible at the computer, but we have several very capable members who will be along very soon. Thank you for choosing this forum to join....i look forward to sharing stories with you.
    Phyllis

    share a smile today

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    Hello Joaney...

    Welcome to WHL...glad you found us. Sorry you're having problems posting...happened to me too when I first joined up. If you look at the upper left corner of your post, you'll see it has the number of posts you've made. Right now it reads only 1 post. Looks like your other attempts didn't make it unfortunately.

    When you start a new thread and type a post, what happens when you click on 'Submit Reply'? There should be a pause for a moment and then it posts. The first few times I tried to post, when I would hit the 'Submit Reply' button, my entire post would disappear. That was so frustrating, so now when I have a long post, I always copy it, with Control C, just in case it disappears. Then at least I don't have to retype. I just open a new post, and paste it back in. Not sure if this is the problem you're having.

    I'm Lori and I was diagnosed with Lupus at age 18. I've got a few years of experience with it...I'm happy to answer your questions. I was diagnosed right out of high school and had a pretty rough time for about the first 5 years. I've had to take Prednisone for quite some time, quite a few of those years it was Prednisone combined with Imuran. I'm married and I have 2 children, a son and a daughter. I live in the U.S. on the West Coast in Portland, Oregon.

    Do you have a good doctor that's taking care of you? Are you on any medications for your Lupus? What kind of symptoms do you experience? Go ahead and tell us your story....I know others will be happy to share theirs.

    We have another member on here that's from Australia, her name is Hazel. Hopefully she'll be along soon to say hi.

    If you're interested in learning more about Lupus and how to live with it and take good care of yourself, you should go to the forum called 'Lauri's Lounge' and look for the 'Sticky' posts that are right at the beginning. They are full of valuable information from some of our knowledgable veterans.

    Sending you welcoming cyberhugs...

    Fondly,

    Lori

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    Default A little about me

    Hi Phyllis, thanks for your reply. I think i'm getting the hang of things now. I think my first message may have been too long, and thats why it was not posted. Well, where do i start. I'm 30 years old, and was told early last year that i have lupus. First i was in denial, then the symptoms started getting really bad. I had no choice, but to come to terms with the "lupus". I was hoping and praying everyday that this had all been a mistake, but now i know this is something i'm going to have to learn to live with. The first 4 months were the hardest. Depression hit hard, but my 2 young children were an everyday reminder that i had to keep on going. Since then, all i've been doing in my spare time is researching this disease, i've learnt alot, so hopefully i can be of some help to those wanting to understand more about the disease. My only question now is "what does the future hold for me". I know that no-body can answere this question, and after reading tonnes of information about lupus, my most important question still remains a mystery. The hardest part about this illness, is the fact that no two lupus cases are ever the same,so you never know what might happin. Hope to hear from you again, and maybe you can tell me abit about your experiences with lupus. Joaney.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Joaney,

    I'm Rob, and I'm a Moderator here. I looked at your personal user settings as a member here, and I didn't see any reasons why your posts would not show up. If you still have problems posting, let me know via personal message, or by a message on my profile page, and I will ask the site owner and admin if this is possibly a software problem with the website itself. We'll get this worked out-welcome to our group.

    Rob

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    Hi Lori. Thanks again for your reply. I think i'm getting the hang of things now, although i can't concentrate properly at the moment, as my 2 children are trying to climb over the top of me, so sorry in advance for any mis-spelt words. I read your post, and i felt sad to hear you were diagnosed at age 18. I'm glad you had the courage to have children, as i have read alot about women who are too scared to get pregnant because of certain complications. You are an inspiration to all those women, and proof that having a baby is still possible. I hope all is going well with you right now. You asked if i was on any medication, and for the moment i'm taking nothing. My symptoms are mild, and i have not yet had a flare up. My joints are constantly sore, and i always seem to have a few ulcers. The joint pain hurts alot after waking up in the morning, and after sitting for too long. The pain is constant, but bearable. My thighs and forearms hurt from time to time, and when that happins, my body feels very weak. My rheumatologist, who i see every 3 months, tells me i should'nt worry too much, but i'm scared that the lupus may just be progressing slowly, and that one day soon, it's going to effect my entire body. I have a high homogeneous titre and centromere titre (>640)which indicate a mixed connective tissue disease of scleroderma. I also have a high cardiolipin IgM AB, which could be an early sign of antipospholipid syndrome. I'm trying to stay healthy, and do all i can to try and stop my situation from getting worse. I'm hoping for better days to come, as at the moment a feel twice my age. Hope to hear from you again, Joaney.

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    Thanks Rob, i would'nt have a clue what happened to the other posts. I know one of them was too long, and it probably did'nt help that i was writing them at 2am in the morning. Thanks for introducing yourself, i have had a warm welcome by all who have replied. Talk to you again soon, Joaney.

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    hi joaney,

    i see you have mastered the posting process. I am so glad, and i am especially glad that you have joined our group.

    we suspect that my lupus symptoms started in my mid 20s. for many years, i went day by day with no symptoms (probably in remission). In 1996, my symptoms hit hard, but i was diagnosed with fibromyalgia and struggled along until october of last year when my rheumy diagnosed me with lupus as well.

    i am surprised that your rheumy did not start you on plaquenil. It takes up to 6 months to work, but many people get lots of relief from the drug. It actually slows the progression of lupus, and is the standard treatment used by rheumies. You might want to ask your dr. about it, you might be able to get some relief from your symptoms.

    I am glad your symptoms aren't too bad right now, i know with two little ones, it is difficult for you to find the time to feel poorly.

    how old are your children?

    you are concerned about what is in your future. There is an interesting thread in "Lori's lounge" that addresses what each of us used to do before lupus changed our lives. Lupus does change your life, but life does not end. What used to be normal, is no longer....you have to set new "normals" in your life, but, life does go on.

    Have you read about protecting yourself from uv rays. Sun blocking is crucial for the prevention of flares. sun exposure can send you into a flare, or increase the intensity of a flare.

    hope you are having a great weekend.
    Phyllis

    share a smile today

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    Hi Pyllis.
    I'll be asking my rheumy about plaquenil on my next visit. He always askes me what level of pain i am in, and i always say that it is bearable because i thought that if i didn't need medication, it's probably better if i didn't take it. I've read abit about this drug in the past, and i know it can cause serious side effects, however this is unlikely. I thought plaquenil was mainly to help prevent inflamation, and i did not know that it may slow disease progression. I'm very thankful that you have provided me with this information, as now i'm begining to wonder whether i should be placing my life in this doctor's hands. I'm wondering how long you had remission for? You said you suspected your lupus started in you mid 20's, but if you don't mind me asking how old you are now?
    I have 2 boys aged 5 and 2. They are a handful. Do you have children?

    I have read alot about the sun, and flouro lights. I've never had any type of rashes related to lupus, but i always take care by wearing UV clothing, hats and sunscreen. I think people must think i'm crazy because i'm always covered up when outdoors. I have not yet told my family about my lupus, and they are always telling me to get abit of sun. When i say "family", my husband knows, i mean my parents, my brothers, and sister. They don't know. I don't like to worry people, after all, everybody seems to have their own problems to deal with. My family are "stress heads" I don't want to stress them out until i have to, until my signs become obvious.

    So where are you from? Has your lupus been giving you any problems since you were diagnosed in october?

    Lupus is'nt very well known about here in Australia, the first time the doctor uttered the word lupus, i did not know what it was. The only thing that came to mind was a "seinfeld" episode, when George started freaking out because he thought he had lupus. When i went home and looked it up, i began freaking out. I could'nt believe it. I spend alot of nights wondering what it could have been that triggered this off. I remember getting sick alot as a child. Virus after virus. It seemed i had a cold/flu that lasted around 1 whole year. My mum would say they were allergies, like hay fever, but i always had that sick feeling that went along with it. Then i start thinking about all the pollution thats around us. While growing up we lived right near a highway. Our back fence faced the front of that highway. I lived in that house until i was 20. Then there's the stress and trauma factor. I suppose we have all had our fair share of that. Hormones? I'm not sure how this effects lupus, but being that 90 out of 100 people with lupus are women, i suppose hormones must have something to do with it. I'd like to know what think about this. I'm sure it's crossed your mind. I don't think it's anything we have done wrong, but something that might have happened to us while growing up.

    Thanks for reading my message, and thanks again for the info. on plaquenil. Hope to hear from you again, Joaney.

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    Hello and welcome! I am sure you will find all the friends you could possibly want here!! There are wonderful people here ready to listen, talk, laugh, and we give good hugs!! I am very happy that you found us!! ~ Angie
    A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!

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