Archive for the ‘health advocacy’ Category

There’s More to Lupus Than You Know

May 15, 2009
Advertisements

Lupus causing extended suffering

May 12, 2009

My previous post was tongue in cheek…but now, this is living hell…the constant itching is actually painful…dr has increased my antihistamine to the point that it knocks me out…when i wake up there is a 1 hour window (now) before i can take my next dose…i have to choose what feels like induced coma, or suffering…the lupus is making me suffer, exacerbating and extending the allergic reaction

Personal Stories of Lupus

May 10, 2009

Its Mother’s Day here in the USA.  I’m a mother home very sick with a lupus complicated drug reaction.  Since this is Lupus Awareness Month, I hope to blog  something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really  need to know more about the effects of this devastating disease:

Personal Stories of Lupus

Lupus Awareness Month – The Five Stages of Lupus

May 9, 2009

 

Sung by Avril Lavign

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Do You Know What Lupus Is?

May 8, 2009

images-2

You  should… It can kill you or a loved one.

May is Lupus Awareness Month. Click here to find out what you should know… And here.

Doctor Knows Best

March 2, 2009

1.5 – 2 million Americans have a form of lupus

February 7, 2009

Do you even know what lupus is ? You should. It can kill you or a loved one. 

Stroke Signs

January 20, 2009

brain-stroke

If this can save ANYONE, ANYWHERE, I will be so happy….

Most people know the main signs of a stroke:

  • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
  • Sudden confusion, trouble speaking or understanding
  • Sudden trouble seeing in one or both eyes
  • Sudden trouble walking, dizziness, loss of balance or coordination
  • Sudden, severe headache with no known cause

But these are not so well known, and are routinely used in the emergency room.  They were used with me when I stroked. I actually check myself with these when I am having fears of another one:

1. Ask the person to raise both arms

2. Smile and show their teeth

3. Ask them a question that requires a coherent sentence for an answer

4. Ask them to stick out their tongue (it should come straight out).

If ANY of these are even questionable, rush the person to the hospital. If they arrive within 3 hours of the onset of a stroke, there is a drug that can completely reverse its effects.

For more information go to the American Stroke Association.

Even White Girls Get the Blues

December 3, 2008

That title has nothing to do with my post. Its just a play on words of an old book called Even Cowgirls Get the Blues. I don’t know…that’s just where my brain went… Anyway, what I really wanted to mention as a P.S. to the Calling All Racial Minorities post about needing more money for lupus research is this:

 I specified minorities because that’s the majority of people who get it. But not all. I, for one, am Italian American.  My neighbor who has it is a platinum haired Norwegian American.  Just want to say that all the rest of us need to be heard too.

The end.

CALLING ALL RACIAL MINORITIES! No New Lupus Drug in HALF A CENTURY???!!!!!

December 3, 2008

What does “No New Lupus Drug in 50 Years” mean to you? Do you have lupus? Do you love someone with it? Did you love someone you lost to lupus?  What can you do?

And WHY has there been such a shameful lack of research??? Interesting that the majority of victims are minority women…blacks, Asians, Hispanics…. I can’t help wondering how much faster they’d be moving if the majority of victims were white, upper class men… The YouTube I’ve inserted here talks all about the difficulties of research due to the complexity of the disease and the genetic variations of the patients. But still…you have to wonder…

The Lupus Foundation of America invites you to share your story with Congress. FIGHT for more money for research!

Share photos, personal stories, put faces and details on the stats they don’t even have.

God helps those who help themselves. LET’S ALL DO IT! LET’S FIGHT FOR OURSELVES! Go to the LFA  website (link below) for details on how to make your voice be heard in Congress.

I know I will.  C’mon guys. We are all we have. Lets stick together and do this together. Look what Rosa Parks, one woman, was able to accomplish with a single act.

From the LFA Website:

November 20, 2008 marked the 50th anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus. Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.