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.

Writers Workshop: Helen Keller Inspires me... sometimes my kids make me wish I couldn't hear them OR see them.... sometimes

Today's Post brought to you by:   

Mama Kat's Losin' It

Prompt#5:

"Keep your face to the sunshine and you can not see the shadow" - Helen Keller

In what ways are you able to stay positive about something that sometimes brings you down?

At first, I thought this prompt was really hard. 

Then I realized

It's Not! 

What do I do to help with things that bring me down?

This! 

This is what I do.

I write. 

And sometimes, instead of feeling like a failure or that my life is miserable or unbearable...

I actually, really and truly, like my life and the trials and tribulations it brings.

What do I have in my life that sometimes brings me down?

Hmmm, good question.

I have TeenBoy and BratChild and SIX...

And then I have a mortgage company from HELL

And 2 grown children  I still support...

But the biggest elephant in the room is my health.

I have lupus and rheumatoid arthritis and fibromyalgia... 

or a combination thereof...

or none of the above.

Depends on which doc you ask on which day of the week.

I have written about my life , my kids,  my mortgager and  Living with Lupus.

I have no idea whether anyone actually reads these posts, but they help me to let off steam or use sarcasm and witty repartee to deal with the bumps along my life's path.

How do I stay positive?

Not sure that I do, but I am sure that I don't let the suicidal thoughts,  or homicidal ones for that matter, have any real space in my head... 

And that's about as positive as I can be... 

Solar Power... or... I love the Sun but it doesn't love me!

Yes, I worship at the shrine of the sun.
Or I would, if I didn't have to worry about this pesky sun-sensitivity thing.

I LOVE the outdoors.
The Sun.
The Air.
The Nature.

From early Spring thru late Fall you can find me on our porch, or on the deck, or in the pool.

I can't spend as much time actually IN the sun anymore without getting a rash and burning easily, but where there's a shady space or a Teflon coated SPF 75 umbrella....

You'll know where to find me.

And if I'm not in the shade, or under the umbrella...
Look in the garden and I'm sure I'll be there pulling weeds, planting flowers, playing with the pond fountain and getting entirely too much sun...

Like I did this weekend.

I know, I know...

Sunscreen everyday keeps the wrinkles at bay!

BratChild and SmartGirl did remind me, but of course AFTER I was already turning a rosy pink...

And pink really ISN'T my color!

Health and Happiness... It's all in how you play the game... Of Life that is

LUPUS FOUNDATION OF AMERICA
I will preface this post be saying it is not like my usual posts. My only excuse is that today is just 'one of those days'.

Getting out and getting moving.
These sound like very simple things to do.
I assure you, they are not.

Winter is a hard time of year for me because I have Rheumatoid Arthritis(RA),an inflammatory disease that affects the soft tissue at joints, not the joints themselves.

I also have Lupus and Fibromyalgia.
Lupus, like RA, is an autoimmune disease. It causes your body's disease fighting cells to attack it's own perfectly healthy cells.
Sort of like when your kids beat up on each other... just because they are there.
This causes damage to soft tissue and major organs alike.

Some people have kidney and liver damage. Some Lung. Others heart. A very small number, about 15%, have brain, or Central Nervous System (CNS) issues.

I have problems with my heart. Not the actual heart itself, but the soft tissue surrounding it. It's called Idiopathic Pericarditis, which in doctor-speak, means fluid fills the soft tissue around the heart causing swelling that in turn creates pressure. Sort of like someone has their hand wrapped around it and squeezes.

I also have some level of CNS involvement. My fingers and toes have decreased feeling, and my hands have lost most of their strength.

I was an IV nurse. Now I can't even feel the butterfly needle in the fingers, let alone a vein under the skin.

It is frustrating and depressing to look at myself and what I can no longer do.

So, I try NOT to do that. I did say try, because sometimes, it's just too hard not to see the changes in my life these things have caused.

Why is Winter hard for me?

My joints get stiff and often swell.
My feet and fingers are always cold and numb.
My mind plays tricks on me, I think I say things only to find that I thought them but never actually voiced them.
I forget things like appointments, kids activites, what day of the week it is. Little things, most are. Big things, very seldom, but enough to bother me.

There is no cure for either RA or Lupus. There are meds that can help with the symptoms, but they only make it tolerable and reduce flare ups of symptoms.

Nothing can bring back what is lost once it goes.

This is what I live with daily.

Forgetfulness, pain and weakness, chest pain and tightness, sometimes feeling older than I really am.

Often feeling useless or worthless.

Get up and move. Take walks. Eat right. Stop smoking. Decrease stress. Think positively. Be active mentally and physically.

These are the things I am told will help me.
And in the summer I can, and I do, all of these things.

The winter is different. The cold affects me differently and makes getting out of bed and walking to the bathroom a hardship.

But I keep waking up. I keep walking to the bathroom. I keep doing the things I need to do- household chores, going to work, ferrying kids to and fro.

I do this because I will not let an illness make me something I am not. I will not let my family down. I will not succumb to the weariness and pain.

I will continue to be ME as long as I can.

That's the best I can do and that will have to be enough.

Just Say NO!

Just say No! ... to drugs, to alcohol, to cheating, to lying, to living above your means, to judging others, to wasting resources... these are the messages we hear constantly via family, friends, media.
But there are other things some of us should say NO! to. Things we are ashamed to talk about. Things that we are afraid will make us look bad in other's eyes.
I am one of those people who should say NO! a lot more often than I do. And not to bad things...
I am ashamed to say that I should say NO! to requests from the PTA, Sports Teams, DeMolay, Rainbow, family, friends... I should, but I don't.
I teach my children that to Give of One's Self is the reason we are put on this earth. To help others when we are able, to think about the other person, or the greater good, before ourselves is how God wants us to live our lives. That if you say you will do something then come hell or high water you do it. Your word is your bond. Your Integrity is the best measure of the person you truly are. If you cannot be trusted in small things then you will never be trusted in large ones.
These are the simple truths that I base my life, and how I live it, on.
Now I have come to a place in my life where saying NO! is required more often than I want to admit, not because I am lazy or getting old or even uncaring. No, it is worse than that, for me at least. I am tired. I am literally tired of doing, going, planning, making, building, organizing, calling, begging- for the schools, the sports organizations, the youth groups, family, friends, and work. I have cut and pasted. Made phone call after phone call. Planned event after event. Often used my own money with a small hope that I would be re-paid, and more often not.
I want to say No! really, I do! But then I get a call from my Mother-In-Law. Would I go to chemo with a family friend- just to make sure he is okay on his own? Of course I can. Oh crap- I was supposed to say NO! to that wasn't I? But what if that were my loved one- husband, child, mother, father, sister, brother... alone in a world of medical terms and unknown outcomes? Wouldn't I want someone there to be with them? Isn't that what I teach my children we should do? I lead through example. My children see me volunteering, helping, giving of myself- even when I have nothing left to give. But to do otherwise would make me one of those "Do as I say, not as I do" people. That I could not abide.
And if I had said No! to sitting with a family friend while he recieved his chemo treatment I would have missed out on a wonderful, lively and intelligent conversation. I truly enjoyed talking with him about common interests, life lessons and lives we lived in the past. I gained more from him than I could have possibly given.
And that is why I continue to say YES! to so many requests for my time, energy and resources. What I gain is so often more than I can possibly give, the lessons learned, the people met, the time well spent is almost always worth any sacrifice I had to make to keep my word.
Almost.
Just Say NO!--- yes, I do say no more than I used to. I am easing into it. It is hard to change the way you have lived your life for 40-something years all at once. I think that by the time I am old and gray- okay more so than I already am- I will have this NO! thing down.
Until then, I will continue to make small strides toward that end. I will still say YES! more than I should- for my own health and welfare- but I still have children that are learning how to be good people and the only way I know to do this is by DOING what I tell them they should do.
So... please, only ask me for help if you REALLY need it... you know that I cannot
Just Say NO!... not yet anyway!

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...

To that end I am writing this blog entry and I am creating a line of LUPUS AWARENESS jewelry and accessories that will be available at

www. DHDesigns.4t.com

A portion of the purchase price for all the LA products will be donated to the LUPUS Foundation of America to help fund Lupus research.

Please help me to help others by purchasing your Lupus Awareness items at
www.DHDesigns.4t.com

DID YOU KNOW?

World Lupus Day - May 10, 2007
World 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.