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Tuesday, October 18, 2011

October is Lupus Awareness Month... Did You Know??

This is a re-post of a post I wrote not long after getting the diagnosis of Lupus with Fibromyalgia ... since the original post I have also been diagnosed with Rheumatoid Arthritis and neuropathy of the hands and feet and a mild seizure disorder - Lupus related- that has since resolved but leaves me constantly on the look out for a recurrence of this problem. If you know someone with Lupus, Fibromyalgia, RA , MS or any of the ever increasing auto immune illnesses and syndromes please take the time to let them know you care, give them a hand, lend a listening ear... You have the power to make a difference in someone's life... Use it! 



LIVING with LUPUS

DID YOU KNOW?
MORE PEOPLE HAVE LUPUS
THAN AIDS, SICKLE-CELL ANEMIA, CEREBRAL PALSY,
MULTIPLE SCLEROSIS, AND CYSTIC FIBROSIS
COMBINED!

Source: Lupus Foundation of America, Inc., Lupus Fact SheetProvided by the Lupus Foundation of America, Inc.
This Means SOMEONE YOU KNOW HAS LUPUS!


Some of you know that I was diagnosed with Lupus just over a year ago. Of course the disease was around long before that , and I like many others, went through a series of frustratingly disappointing tests and dialogs with Doctors over many years along the way to accurate diagnosis. 
I try not to talk about my illness with people in general... only those who have it, or an equally debilitating problem, that can relate to how I feel and what I go through daily trying to Live with Lupus.
But I decided to change my focus and see where it leads me... thus far I think it is leading me in a positive direction that I think will help me to help others.

What is Lupus? 

Well, that is a loaded question so I will give the easy to understand version, but you must bear in mind that it is much bigger and more vastly affecting than I can even begin to describe here on my simple blog pages.

Lupus is an AutoImmune illness.
Simply put it means that my immune system is attacking and destroying the cells of my body like they would a germ or bacteria that cause the flu or a cold. For whatever reason, my immune system has become the Super Hero-SUPER IMMUNE SYSTEM ! It takes on all cells- friend and foe alike- without discrimination. Ok, anti-discrimination is great when you are talking about equal housing opportunities, job candidates, college scholarships... but when we are talking about the building blocks of every being, it is not such a good thing to have a Super Hero on your side! 
SUPER IMMUNE SYSTEM causes inflammation and swelling in the soft tissues and connective tissues within the body; like the heart, lungs, kidneys and liver. It cause joint pain and swelling, which lead to arthritic-like pain and often the inability to sit , stand or walk for significant periods of time. It causes pain for no apparent reason that is random and unpredictable, that comes and goes without any warning, and can leave a person writhing in pain and exhausted beyond belief.
Our Super Hero can also attack the Central Nervous System ( CNS) by causing swelling and cellular changes in the brain. These symptoms may come and go without rhyme or reason with increasing severity along the way. Forgetfulness, confusion, severe headaches, vision disturbances, loss of coordination and notable difficulty making your body do what you ask it to do, like lift a leg to go up a step, become more frequent as time goes by.
Chronic Fatigue, exhaustion, insomnia... these are all familiar symptoms known to those of us LIVING with LUPUS and our friends and families.

The Bad News is ...
There is NO CURE for this illness or those related to it like Rheumatoid Arthritis, Fibromyalgia, Scleraderma and the many, many more that I cannot possibly list here. 

The GOOD NEWS is...
Research is being done to develop new medications and treatment programs to make increasing the QUALITY OF LIFE for those LIVING with LUPUS an attainable and long term goal.

How can I make Others Aware of LUPUS?
This is the question I asked myself. 

What can I DO to MAKE A DIFFERENCE?
The Answers I gave myself are these...

Tell SOMEONE about LUPUS and Show Support for Lupus Research...



DID YOU KNOW?
  World Lupus Day - May 10World Lupus Day provides both a day and a forum for various findings to be shared with the global lupus community. In addition, observing World Lupus Day offers lupus patients the comfort of knowing their condition is recognized and being addressed on a global level.
OCTOBER is LUPUS AWARENESS MONTH
It doesn't have to be October to help spread the word about lupus.If you want to know more about lupus, contact The Lupus Foundation of America, Inc.

1 comment:

Robin said...

I didn't know this about you. Thanks for sharing.

The roller coaster of diagnosis is horrible. We still haven't figured out what's wrong with me.

I spend every day trying to be productive. Trying to be normal. While hurting and dragging myself around. And usually no one can tell. People think I'm fine. I think that's one of the toughest parts of chronic illness. It's so often invisible. People just don't get it.

I hope today is a good day for you. I hope you have minimal pain and a little extra energy. And that you are able to find value in yourself no matter what you are able to offer today.