View Full Version : Finally Admitting I have Lupus - From Australia
11-08-2006, 11:58 PM
Hi my name is Liz and I hale from the land down under! After a significant lupus flare up (only 8 months since my last) I think I have to admitt I cannot keep living my life as if I don't have lupus. When I first noticed something was wrong I was barely 1 month out of university, I had finished my degreee and I thought I had the world at my feet. When I was diagnosed with Lupus my friends thought I should be depressed about it but instead I got myself 2 jobs and tried to live as if I didn't have it. Unfortunatly (as those with lupus know all too well) you cannot run from it and it will always be there. I hate the steriods with a passion - i
put on sooo much weight! I am now on mycophenolate because of the flare up and I am scared about the side effects and the future ability to having children. Not something a 22 year old knows how to deal with now that i have finally admitting to having lupus! Just thought I would tell my story! Liz
11-09-2006, 02:27 AM
Welcome to the forum. There are a lot of nice folks that come here. They are very knowledgeable and will be able to answer all of your questions. I have SLE and have had it for years, in fact for most of my life. I just want to welcome you to the forum.
11-09-2006, 08:09 PM
I was fortunate in having my children before being diagnosed, but I know this is a big burden for many younger women with lupus. It's really important not to get pregnant while on cellcept, so you need to use two reliable forms on contraception. A lot of the medicines prescribed for lupus can actually make birth control pills less effective, so you need to have a backup.
There are several women on the forum in your age range - they will certainly understand your fears and frustrations, concern about having children, and the fear of losing your hard-won independence. We also have some other members from Australia, England, and Canada. I hope you will feel at home here - again, welcome.
11-10-2006, 12:50 AM
I'm also from Oz and am new to this group. I was diagnosed in 1999 with SLE but was told by my doctor that I had probably had it for quite a few years before it was officially diagnosed.
I'm currently on Plaquenil and Methotrexate. I was also on Arava but have just been taken off of it due to constant diarrohea. Its hard trying to live through a flare up and so you need to look after yourself. Even though I've had Lupus for years I still sometimes try and live like I don't have it only to fall in a heap pretty quickly.
11-16-2006, 01:56 AM
I have never heard of the meds you are on, the thing that gets me about lupus is that it effects everyone so differenlty, i guess thats the frustration with this disease. yeah i try to run from it, i recently had to leave my job because of a flare up. if i don't stop work and stop putting stress on my body i will end up in hospital before christmas. but i stress about money and the expenses of christmas and get frustrated at all the limitations i have because of lupus. its hard emotionally too, one minute I am fine the next i am panicing because i can't see how i can possibly live with this for the rest of my life, i am trying to cope
11-16-2006, 08:10 PM
Hi Lizzy Bee,
what meds are you on for your Lupus? How sad that you had to leave work because of the Lupus. I really want to go back to work at some stage but in all reality it probably won't happen as I have far too much trouble with fatigue. I also worry a lot about money etc as my husband can't work due to a back injury so we are on the pension. It all gets frustrating at times.
11-18-2006, 11:00 PM
Well after my flare up I have been put on some new meds, cellcept being the major new one. I am also on prednisone (but so is everyone - nothing new their) also on resprim (an anti-biotic) blood pressure tablets, and calcium tablets. i just think it's weird that i've never heard of the meds you're on, do you have kidney involvement?? i do, and they took a battering after this flare up! I know I will go back to work, the when is now in question and I also need to pick a job which has a low stress rate, i was going to study and finish my teachers degree but i don't know if i could wit-stand the stress of a teachers' life! its hard to slow down and take a break after being to independant for so long, but the lupus got me again and i just have to wait and recover from this flare in time,
sorry for the ramble
12-07-2006, 07:32 PM
I can relate... I am 25 and my doctor thinks I may have lupus (I see a rhuematologist on Monday). I am scared to learn that my plans may go out the door at such a young age. My thoughts are with you and I have to say that this forum is really helpful! Everyone is so nice!
12-08-2006, 04:05 PM
The thought of lupus is scary for anyone. I rememeber when I first started getting symptoms and everyone told me no it couldn't possibly be lupus. when I was diagnosed it was a shock and i had alot of mixed emotions, but you know what?? it is amazing how your friends and family can pull you through something like this. I just had a flare up and have to go on steriods and now I have puffed up like a balloon. I really wanted a puffy free xmas (so all the ppl i only see once a year dont just think im fat, if you put me in a red suit i cud pass as santa with all the steriods im on!) if you do have lupus remember that its not a life sentence, you will have good days and bad days and yes being so young sucks because you have to re-think your life plans, but you will live, and if you ever need support, or just want to rant about how sucky lupus is just jump on here and everyone understands what your going through - good luck!!!
12-22-2006, 05:13 PM
This is my first time to this website... I just turned 27 years old - and I was diagnosed with lupus when I was 14 years old. And believe it or not Liz, I am just now realizing that I haven't really accepted lupus into my life. I have been trying to keep a normal kind of "lupus-free" lifestyle for 13 years!!! I have been pushing myself - in sports, and in school, and in my career - for 13 years! Telling myself that I can still do everything - and when I'm tired I'm just being lazy. Within the last year, depression and my emotions have caused a lot of havoc in my life - and I am just now realizing that I need to accept the role of lupus in my life. I'm not sure how I'm going to do that - but I'm starting by reading books, being a member of this website, and going to a counselor. I know how you are feeling - and it's a miserable feeling. It's hard to let go - I'm here for you!