Support

Lupus Association of Tasmania
(Promoting and supporting research designed to discover the cause of, and a cure for,
lupus and related auto-immune diseases.)



	Joining a support group can change a person's perspective. The sufferer learns how others handle problems, some of which may be similar to their own. These groups provide for the exchange of ideas and feelings and suggestions on how to cope. The Lupus Association of Tasmania is basically a self-help group for anyone suffering from SLE, Discoid lupus, and overlapping or associated syndromes such as Fibromyalgia, Polymyositis, Sjogrens syndrome, Scleroderma, Antiphospholipid syndrome, Raynaud's Phenomenon and ITP (Thrombocytopenia). We can help you with more detailed information on a specific area of your lupus. By supporting our activities you can make a contribution to further research and education in regard to lupus, and help yourself.

A HUG

No moving parts, no batteries.
No monthly payments and no fees;
Inflation proof, non-taxable,
In fact, it's quite relaxable;
It can't be be stolen, won't pollute,
One size fits all, do not dilute.
It uses little energy,
But yields results enormously,
Relieves your tension and your stress,
Invigorates your happiness;
Combats depression, makes you beam,
And elevates your self esteem!
Your circulation it corrects
Without unpleasant side effects
It is, I think, the perfect drug:
May I prescribe, my friend,....the hug!
(and of course fully returnable!)

....Unknown

HAVE YOU A STORY TO SHARE?

Sharing the diagnosis, the fears, the positives, the humour, the family support, the new friendships made, can give strength to both yourself and those with whom you share.
If you are a sufferer, a family member or friend who has been affected by Lupus - share YOUR story here.

Email or post your story or poem to the Lupus Association of Tasmania for inclusion in this site. You may remain anonymous if you so desire.

Submitted by Wendy - November 2005

When I was a child my hands got covered in a red rash. My doctor had no idea what it was and kept looking in his books to see if he could find it. But to no avail. Many years later, when my second child was in kindergarten, that same rash appeared all over my hands and arms and across my face. My doctor, who happened to be the same one that I had seen as a child by coincidence, took photos of the rash and did a blood test to see if it was Lupus Disease. But my blood tests came back normal. So I went on thinking that I didn't have Lupus and I was ok, its just a rash I thought, and it cant be serious.

But every year the rash would return, especially in summer. But then I started to get very tired and suffered from a lot of headaches. I would have a headache for a month non stop and so I had CT scans and blood tests, but my new doctor told me that it must be a virus. The rash continued to come and go, and so did the periods of fatigue and headaches. Then last year my father was diagnosed with Lupus Disease. (SLE) Some of his symptoms were like mine.

So I finally changed my doctor after years of getting no results because I knew something was wrong. Finally he did some more blood tests and then sent me to a specialist. Lucky my rash was in its full glory at the time. He did a skin biopsy, and after 6 long weeks of waiting for the results, I have the answer at last. At the age of 36, I was diagnosed with Discoid Lupus. Although different from my fathers Lupus. I am still coming to terms with it all even though I had expected it. So now I am on medication and I have some very strong cream to help the rash which is already working and I am to stay out of the sun. I need to have full blood work every 4 to 6 months and have my eyes tested every year.

Since finding out about my lupus, I have looked on the Tasmanian Lupus web site http://users.bigpond.net.au/lupustas and received great support from them as well as learned a lot about the disease. I have received lots of information from the very kind people who are dedicated to supporting people like me and my father. I hope to attend some of the support group functions that are organized here in my area in the near future. We all need to talk about our illness and get some support from a support group because not only are we helping ourselves, we may be helping others at the same time.

I have learned how to cope with my disease and I have learned how to recognize the symptoms of a flare up before it gets to bad, and to listen to my body and know when to rest and take things easy so I am not layed up in bed for weeks at a time.

MY STORY - submitted by Teena

At three years of age Taylor, my son, could draw a hospital ward in minute detail. Now, at ten, he asks, "Do we have to go there again?" Taylor is not sick, but his mother is.

I am a forty-one year old woman in a ninety year old's body. Sometimes I'd like my husband to stop treating me like a patient, and more like a lover but my bones are brittle and I can't be the woman he loved before. My son tries to reassure me that I'm still a good mum, despite my illness and I want to be a wife and a mum but it's so hard. At times I can be reasonably well, and then I try to rebuild the relationship with my family, when suddenly, I am thrown back into illness and drained of physical and emotional energy.

I have SLE, systematic lupus erythematosus, an auto- immune disease in which my immune system attacks my entire body and major internal organs. One doctor described it by saying I was self-destructing. SLE is a diagnosis, which completely infuses my life. I take 180 pills a week as well as daily injections. My stomach is a pincushion and when it's too sore to inject I have the injections in my arms and buttocks. Steroids cause my stomach to swell and I have clothes in sizes ranging from seven to sixteen to accommodate for the constant changes in my body. The medication I take has thinned my blood to the extent that any operation could be fatal and it has lead to osteoporosis, which means that sneezing breaks my bones. I acquire new fractures daily.

I was not well in teen years and had a bedroom like a chemist's shop but I didn't know why. Lupus is a deceitful disease that frustrates diagnosis. It was only when I was pregnant that I learned what was wrong with me. I had to deal with my feelings about a continuing relationship with my husband and uncertainty about bringing a child into the world. I still have a feeling of guilt about having Taylor because of the impact of my disease on him. I know he is traumatised because of how I am now, and the uncertainty of how I will be in the future.

Taylor is a special person who has learned empathy beyond his years but he still gets upset and cries when we talk about a future without me. When he feels insecure he cuddles a bed full of teddy bears for comfort or curls up in bed beside me. There's a part of me that I can't give him because my body won't let me. I can't roll around with him or kick a ball because to do so would damage me. I try to prepare him for the time when I won't be around and when that day comes I hope that he'll be ready.

James, my husband looks after me, playing carer and nurse whilst I try to remain human. There's no room for romance. Some days I'm in a wheelchair, other days I'm more mobile and am on walking sticks, screaming, " I can do it myself!" James is damned if he does and damned if he doesn't and I feel he is already in a gradual grieving process.

Increasingly, my home is like a hospital environment. I have a monkey grip above my bed and a sick bowl and a kidney dish next to it. Most nights I sleep in a chair. When I sleep in a bed I break my ribs because the steroids and the blood-thinning agent have thinned my bones. I wear surgical stockings, which I'd describe these as the most uncomfortable things known: like putting on a wetsuit, two sizes too small, over sandpaper. Like I said - there's no room for romance (although I do remind my husband that I love warm cuddly hugs!)

Although I have a disease affecting every part of my body and am in chronic pain I've been blessed with a healthy glowing complexion. I know some people look at me, and can't understand that I'm unwell, whilst others misread my rosy glow as suggesting some other affliction. I know I've lost friends because of my condition and I feel that people often treat me as a patient rather than a person. They don't really know the extent of my pain and its effect on my being. Too often people draw a picture of how I should be without asking, 'How does your disease affect you and what are its symptoms?' I'm a person with an identity even though it may be a little lost among all those doctor's files.

Some days I just want to give in and die. The pain, stiffness and fatigue are all to much, and just sitting up to wash myself or brush my hair is a feat of endurance. It would be so easy to say to myself 'it's too hard,' and slump into my wheel chair telling everyone to wait on me. But I'm scared. I'm scared to give in because I know I won't live very long if I become immobile, due to many other health complications that would set in. So my mind and body play a continual struggle against each other, and if it weren't for the fact that I am so head strong, my body would have been defeated a long time ago.

I often feel the impulsive urge to do things that may not be for the benefit of my health I love to dance, but if I lose control and find myself dancing to some music I feel like I must not let any one see because they can't understand how even with broken ribs I can temporarily enjoy myself. I often get asked questions like 'shouldn't you be resting?' or 'should you really drink alcohol with those tablets?' (I was delighted when a doctor advised me to take folic acid, aspirin and a glass of red wine a night for my arteriosclerosis and vasculitis.) Sometimes I feel like telling people to stop telling me what to do; my life is restricted enough without having more restrictions placed on it by others.

Despite this I have many things that sustain me. I have a faith that makes sense to me and I believe in a creator who gave me life. I read His word, the Bible, for instruction, comfort and hope for a better world in the future. Every time I survive another day to see my husband and son's smile, a bird eating bread and honey on my window pane, or the smell of the perfume of an old fashioned rose I feel grateful that I have lived so far and feel I'm still far luckier than many.

The system does not cater for me or my disease. It provides free needles for junkies but I have to pay for them even though I had no choice in my habit. I do take junk though. I have to take morphine all the time, just because every day I break a bone…….or two. I have a permanent account at the pharmacy and thankfully I have a pharmacist that understands my plight. I spend $430 a month to treat my disease and that's more than we can afford. I was always naturally resourceful and thrifty and now I need to be. I really fear that some day, because of government policy, we wont afford it and I wonder what will happen then. Even dealing with the bureaucracy is a problem because I am obliged to renew scripts regularly for what is a chronic condition. When you have an A4 sheet of daily medications and a head full of painkillers, this is a confusing task. I even have to source some of my medications from New Zealand because they are not available in Australia.

OUT OF DENIAL - submitted by Deb

It was first suggested I had Lupus back in 1988 when I miscarried. Again in 1994 the same diagnosis after a period of ill health - so why has it taken me until 2002 to really come to believe I have lupus?
I was a health educator and trained people about the stages of grief but never thought I was in denial for so many years.
So what has been happening to me? I would go to the specialist, fork out the $100 fee, get the scripts, maybe have one filled.... would try a few new drugs.... but let a hectic lifestyle and great diversion techniques ( like computer games, community work etc. etc.) keep me over occupied to deal with this chronic illness. I even ran a small catering business and I would be so sick after work it would take me days to recover. Sitting in the doctors office I would play down my symptoms, until my partner finally had to accompany me to the appointment to tell the doctor what was going on.
I had a fear of being so consumed with sickness that it would consume me and no way did I want to own illness.
" Oh my Lupus is playing up!!!!"
My Lupus....... I don't want this disease attached to me.
So why the change?
The final stage of grief is acceptance. I believe that I cannot deny this menace but when I was a child I hated having ears that slightly stuck out. As I got older I got used to them. So I have accepted Lupus, not as a best friend, but as something that is grumbling away in the background of my life.

LUPUS - submitted by Feona

From my workroom I see sunshine and sky,
I sit at my pc asking Lord Why me, why?
Years of self attack and abuse
Couldn’t stop me being obtuse.
In turn my body turned against me
Why? Because I wouldn’t see.
Now I know it’s OK to be free
Now I know Its OK to love me.
My friend Lupus has taught me well
It came upon me and gave me hell.

Till recent I found me hard to accept
For years myself I had to reject.
Inferiority ruled self worth was none
Then guilt ruled if I had any fun.
I see now I am of value to me
I see now self-love must be.
My heart must open to let love in
Self-love won’t give Lupus a win.
Let loving in allows love out
No more self hurt, no more doubt.

Self attack means autoimmune
My person must play a better tune.
Emotional stress goes out the door
This lil duck won’t take any more.
Don’t give a damn about trivial things
Care about what makes my heart sing.

God Gave me my own wings to fly
why should I sit about and cry?
My spirit can fly as high as I need
And I can write my very own creed.
Lupus tells me what I can't do
But I tell it what I can do.

Maybe I hide a bit from the sun
That don’t mean I can’t have fun.
Maybe I get tired and need to rest
After giving Lupus a little test.
Maybe my thinking gets a bit slow
But I make my brain have a go.
Maybe I can’t go to work everyday
I can find another way.
Maybe my life path has changed
My goals can be rearranged.

I won’t ask God anymore why me
I thank him for Lupus finding me.
Without Lupus I’d still be blind
Left special bits of me behind.
Without Lupus I could not see
I don’t need permission to be.

Good on yer Lupus my friend
But we will part before the end.