A short Video on Lupus:
This site is easy to understand and is a good introduction about Lupus. Show it to your family and friends. It just may assist in understanding this disease.
Follow my story on the below link:
Links: Informative Reading or Listening
Click on the link below to listen to an informative courageous Gail Falconer. Her personal Lupus journey is told with honesty and detail. I immediately felt a connection with Gail nodding to parts of her story, shedding a empathic tear when comparing her struggles to mine. Gail's inspirational story has given me the strength to reach out to her and others. The outcomes of the email I sent to Gail will soon be disclosed.
Gail linked this extremely helpful Facebook site . It gives some invaluable info coupled with other links to Lupus:
Did YOU know?
Lupus is Latin for wolf and is so name because the (often butterfly…....shaped facial) rash that affects individuals is likened to the bit of a wolf.
Lupus can affect anyone – male or female, young or old of any race, though some are more predisposed than others.
Lupus is a chronic condition, which can have devastating effects in some cases death.
There are some of the things we would love you to understand about this condition and its affect on us, and thus ultimately on you.
Lupus is “unique” as is each person that it affects. It takes NO classic course and it IS unpredictable so please don’t treat us all the same way as each of us is affected differently and can exhibit any number of different symptoms. We are sorry that we cannot give you more assurances and tell you what you are in for.
There will be times when we plan to be with you but need to cancel suddenly. We do not mean to hurt you or decide not to see you – we would dearly love too – so please don’t take it personally.
As with all illnesses, being sick doesn’t mean we’re not still human. We have to spend most of our days in pain and exhaustion, and if you visit we probably won’t always seem like much fun to be with. We are stuck inside this body. We will not contaminate you and often long for some of your warmth and understanding.
Please don’t ask how we are doing today, because often there will be a false answer of “fine thank you”. We do not always want to burden you with all our symptoms.
We will have a myriad of different specialists to see and we are very grateful for all of the many. This often means juggling things to keep up with them, our relationships with our loved ones, work and the many other commitments. We thank you for your support and assistance and always remember you are appreciated.
We do not mean to complain but there are times when we need to talk with you and we know that your patience in listening to us will often help us over a difficult period. Of course, should you need similar assistance from us at anytime, we would only be too glad to share and perhaps exchange coping strategies.
The sun doesn’t always agree with us so therefore at times we thank you for joining us for lunch inside. Your company is important to us.
We may need replacement body parts, so be prepared. Organ and tissue donation can save lives and dramatically improve quality of life. It is a gift of life and hope – one of the greatest gifts one can give another – please consider organ donation register.
We know that giant bruises, unsightly skin and blue fingers and toes are not attractive – turning a blind eye will be much appreciated at times. We also understand that having to continually remind us of things we’ve forgotten, or having to wait for us a while, while we take a rest can be extremely annoying, especially when friends are waiting and you’ve been looking forward to an event for days.
Most of all, we appreciate everything that you do for us, even though we don’t tell you often enough. In many ways we depend on you – we need you to visit us when we are too sick to go out…….perhaps help us with different things like shopping, cooking, gardening or cleaning. Sometimes you may have to take us to the Doctors or the hospital. Sometimes you are our link to the outside world, so please come and visit us.
And, of course, we are sick and tired of being sick and tired –
PLEASE HELP US FIND A CURE.
Lupus Awareness Month is in May and those living with Lupus and relative connective tissue diseases, need your help.
Lupus is known as the Great Imitator, often mimicking other diseases and thus making it notoriously difficult to diagnose.
Because lupus is such a complex disease crossing into many disciplines, it gets little, if any support from medical researchers and pharmaceutical companies – there have been no advances in therapy for decades.
LUPUS – the
We do not mean to frustrate you but please be aware that lupus is extremely varied in nature – one day we can be full of life and join you on our daily walk and the next day we’ll have trouble getting to the front door. Please don’t say “But you did it before!” The symptoms can vary even in the one individual and periods of disease flare and remission are common – we are just as frustrated as you.
We agree that our joint pain and swelling is a source of much angst and appreciate that going out with all our wrists an ankles bandaged up at times is not always a good party look – any aspirations you have of becoming a masseur would be warmly encouraged.
We will look ‘fine’ most of the time but don’t let that fool you. Even though we may look healthy, we may be experiencing pain, intense fatigue or other internal problems. That is one of the ‘mysteries’ of lupus and adds to making coping so much more difficult. Those full, rosy cheeks are often a sign of disease or medication, not improved health. Your understanding and appreciation of this makes you a trusted friend.
Remarks can be misinterpreted and may seem rude and uncaring to us. Take a bit of time to think about what is said….”You look well” and “You don’t look sick” can be extremely cruel and we know that you are not like that.
Please understand the difference between “happy” and “healthy”. When people have the flu, they feel miserable – we’ve been sick for years but can’t be miserable all the time – we work hard at not being so. If someone is talking to us and we sound happy,
It doesn’t mean that we’re not in a lot of pain or that we’re getting better. Please don’t say “Oh you’re sounding better today”. We are not sounding better, we are sounding happy and it is often the sound of your voice or your comforting presence that makes us so.
Sometimes we will be moody or depressed from the pain and medications that we take, or as a result of the disease itself – please be aware that there is an emotional component to lupus and that we may need your helpful support in relating to others that might be present. For this, we will be eternally grateful.
There are times that our hair may thin out or even fall out from Chemo and we will be extremely envious of yours.
Some of us may not be able to cry, or even kiss a loved one (and our dentists will have a difficult job maintaining our pearly whites) – please understand that just because we cannot show you how we feel, that doesn’t mean we don’t care about you.
Your image of us is so often reflected in your eyes. We don’t want to sense pity but please do not treat us like hypochondriacs.
It would mean so much to us if you could learn about lupus. Maybe read a recent publication or ask us to get you some literature. Then you would understand that we aren’t making this up and that what we feel is also felt by others. We do not want to be burdens to our loved ones, please understand that we are trying our best and would love to be as independent as you want us to be.
If you would like to make a suggestion, help us to cope better, or offer help in a special way, please know that we are grateful for your warmth of sharing your steadfastness and the very presence of your friendship. However, don’t expect us to rush out and try lots of new treatments, we’ll take what you said and discuss it with our doctors.
Thank you for reading these articles.
Please pass this on to others to help raise awareness and to find a cure. Log onto this informative website to find out more:
You can log onto: www.lupusnsw.org.au
Macquarie Hospital, North Ryde Map
Macquarie Hospital, North Ryde Map
I've been reading some of your web pages and i find you extremely brave, your an inspiration!
Comment By : Charmaine on 30th Mar 2010
I was misdiagnosed for 6months,seeing seven different doctors for lupus.I was treated like a hypocondreak by the last doctor,and told if i was so bad why dont i go to hospital,as the blisters on my hands and feet made it inpossible to drive,I got a taxi to hospital and was wheel chaired straight through emergency waiting and treaded with pain relief through a drip beforew I scratched myself to death. Diane,your page brought tears streaming down my eyes,people just dont understand do they???I have to move tomorrow,due to the weather,I cant even go outside,I hate this lupus shit.
Comment By : winter on 10th Nov 2009
Loop us with lupus... what a great page. Im sure you will inspire many. Proud of you Ma xx
Comment By : Leesa Burton on 15th Apr 2009