View Full Version : West Aussie
08-10-2009, 08:00 AM
I am 32 and recently diagnosed with SLE.
I live along way from all specialists and find that annoying, especially at this stage.
I have endure 11 misscarrages, my gall blader, apendix, half a kidney and full hysterectomy and countless other surgeries.
And then they look for Lupus!! I spose in small county towns they don't look for the obvious first!!
Finally though I think I'm getting somewhere and glad to find I'm not the only one,( I wouln't of done this if my husband hadn't found the web site and encourage me to register.
The specialist have put me on plaquinil( anti marlaria) lots of and solone lot of is that comon drug to treat Lupus??
08-10-2009, 08:29 AM
s i said before,im sorry you have been through so much but so glad you got here.You are in the best place for info,help,love,compassion,understanding the lot here.Fab members here.
Yes Plaq is the right n best med.Im seeing my rheumi on wed and am gonna ask about me going on it.The other i dont now.Others will post soon and let you know.
Just you hang in there.
08-10-2009, 10:17 AM
Hi Jaclyn -
Just wanted to welcome you to the site. Give the plaquenil some time to work. It can take up to six months (for some people, it works more quickly...I just don't want you to get discouraged if you do not see immediate effects.)
Spend some time searching through the posts and getting to know your way around the forum. There is so much information and friendship here.
Best of luck to you,
08-10-2009, 06:30 PM
I'm glad you posted here & I am glad you have your husbands love and suport through all this. This is a great site that he found for you. There are a lot of members who are from Australia, I'm sure some of them will be along soon. Welcome!
08-10-2009, 08:38 PM
welcome to our special family, we truly care about each other and we are always ready to help whenever needed.
you are so very correct, sometimes in smaller towns, the medical profession still just removes something when there is a problem. I grew up in a small town, and had an early hysterectomy. Now, most of my tests for anything always turn up to be lupus attacking something.
I am glad that you found us....i know your drs. truly care and are doing whatever they can, but now you will be able to learn from some great forum members, and you will be able to participate in decisions about different treatment options, and the so many unforseen effects of lupus. so contragulations...you have made a giant step toward more focused health care.
anyway, join in, have fun, ask questions, and learn ....
(p.s. so sorry if this post made no sense, i am having one of those nights where i am not sure if the brain is actually working.)
08-11-2009, 05:23 AM
Thankyou all for your encouragement I probably sounded quite negetive, or poor me!!
Though in reality I am the type that never complains and just soliders on, I spose that's probably one of the reasons it took so long to diagnose because most of the time I never told anyone about the pain I was in until it was too late, and I was in hospital getting yet another organ removed for normally unexplain reasons??
Well we can laugh about it know...
I grew up in a small mining town in the south west of western australia, my farther is ex army ( maybe thats why I never complained, family moto was always thoughen up, no one wants to hear your problems) and then you got Ma who was raised in catholic boarding schools all her life....
I'm the youngest of three girls and both my two elder sister are complete healthy never been in hospital, other than to give birth to there children..
I am happily married and have my gift from god, my 18 month old little joy Preston...He keeps me going and positive.
Well thankyou all again for your support
08-11-2009, 05:36 AM
NO WAY did you sound negative and im happy you have little Preston.Im also glad you told us and hope as you continue to post,you will feel easier inside and know we all understand and really care.You have been through allot of pain,which many here can identify with.I am so glad you found this site and hope you know you are so brave.Its allot to deal with,pain,emotions,sickness.You have a lovely day if you can.Enjoy Preston and know inside you have a safe haven to come to to vent to scream whatever and it is here WHL.Tell us anything.....we all will support you.
Love n hugs
08-11-2009, 02:44 PM
I didn't think you sounded negative either. I am sure you are feeling more negative then normal if you thought that, but to me, it sounds like normal feel-sick/look-healthy/have-to-deal-with-all-the-crud-that-entails frustration. One of the great things about this site is it's a safe haven for us to come and vent our frustrations, anger, hurt ,feelings, negativity. There is no judgement here. I've looked at other forums and can honestly say WHL is the best place to come for some love, healing, shoulders to cry on, support, understanding and advice. There is even a place on here just for ranting. If you go to Community/Social Groups/Uncatergorized Groups/We Have A Rant (or some other title similar to that) you can :hissyfit::hissyfit::hissyfit: all you want there too.
08-11-2009, 07:24 PM
Not negative at all...trust me, we all know!
I'm so sorry you've been through so much. I've been in and out of hospitals for years, so I know your frustration!! Know that you have friends and comerades here who understand you and want to help.
As far as Plaquenil, I've been on it for two weeks and can already see a difference. I think it should be mandatory in treaking Lupus!!
Looking forward to getting to know you better!!
08-13-2009, 07:01 AM
Its been a day or so for me to reply, I think either my body having one major hissy fit with me or I have recently ran over a chinaman???
If I didn't have my little angle to run around after all day I probably would of curled up on the couch and died.
Is it common to feel this bad when starting on new meds???
Dose it get bad then get good???
I hope so, I've even getting sharp pains in chest which has been freakin me out a bit....
It sucks being so far from doctors...
Anyway enough of my bla bla bla's....
I hope that everyone is well and I hope you all have a lovely weekend, I be just sitting around being a Mum!!!!!
08-13-2009, 11:04 AM
your story speaks to me. i have lost 7 babies. i had my gallbladder and my tonsils removed at 14. i guess all of this may have been going on longer than i thought. no diagnosis for me yet. just joined the site yesterday. looking for answers. it sometimes feels like this is one big jigsaw puzzle and no one knows how to put it together. the ironic part is i love jigsaw puzzles(the real ones).