Lupus Advocacy is important!

I know what it is like to go to Washington, DC to advocate for Lupus Research.  I remember the exhaustion... I remember the sore feet... and I remember why I did it.  I went to our nation's capitol because over 1.5 million Americans have Lupus.  Lupus is one of the lesser-known major diseases in the United States, Lupus is an autoimmune disease that effects each individual patient differently.  If I was on Capitol Hill today I would be joining the team of Lupus Advocates that are meeting with members of Congress, (or more likely, a Health Legislative Aide) today to discuss the importance of funding Lupus medical research by telling my story of what living with Lupus has been like for me the past 28 years.  I would tell you that it may not have been easy but it was "much better than the alternative".

If you have Lupus or someone you know has Lupus.  Please raise your voice and let your Senators and House members know that you are a constituent who is an advocate for Lupus and you vote.  Let your voice be heard...

The Lupus Foundation of America is going to Capitol Hill today to ask for:

 

Increase funding for Lupus Medical Research at the National Institutes of Health (NIH).

 

Fund the establishment of a Lupus Medical Research Program, established under the Congressionally Directed Medial Research Program (CDMRP), Defense Health Program (DHP), Department of Defense (DoD).

Continue funding for:

The National Lupus Awareness Campaign at the U.S. Department of Health and Human Services' Office on Women's Health (OWH) which increases public awareness of Lupus in order to increase early diagnosis of Lupus.

The Health Provider Education Campaign at the U.S. Department of Health and Human Services' Office of Minority Health (OMH) which increases health professional providers' awareness of Lupus to improve Lupus diagnosis and treatment.

Lupus has a tremendous financial cost to the nation, estimated at $31.4B annually, but the cost of inaction will only make those numbers grow.  We cannot afford to wait.  

http://capwiz.com/lfa/home/

I am a writer for ButYouDontLookSick.com ~ Put Your Best Face Forward!

I am so excited and proud to announce that I am one of the new Staff Writers on the website ButYouDontLookSick.com

Product Review Nicole Paxson “Mimosa” Liquid Foundation: Put Your Best Face Forward!

My Review of Junk Food New York Jets Vintage Distressed Triblend T-Shirt

Originally submitted at NFL

Like players need their uniforms, you need your game day gear! The Junk Food® vintage distressed triblend tee looks great whether you're hitting up a tailgate or hosting at home. Your team's script name, logo and "Football" are each screenprinted onto the chest in a distresse...

Junk Food New York Jets Vintage Distressed Triblend T-Shirt

J-E-T-S T-shirt!

By LA Lupus Lady from Los Angeles, CA on 1/18/2011

 

4out of 5

Sizing: Feels too small

Pros: Stylish, Shows Off Team Pride

Best Uses: Around Town, At The Game, Watching The Game on TV, Anytime

Describe Yourself: Sports Enthusiast

Super t-shirt! Bought using the Wildcard Network to help support the Jets for Wild Card Weekend ~ my new lucky shirt, it works!

(legalese)

Help me create and share the "Joys of Lupus"

One of my proudest moments of being "LA Lupus Lady" came when I posted the final version of the "This is what Lupus looks like" ~ I hope everyone has had a chance to watch the video that I had the idea for and that together we (the Lupus community!) made and called "This is what Lupus looks like"!


I am already planning the next video project.  Are you ready..?  The next video is going to be called "The Joys of Lupus" I am asking for you and every "Lupie" you know to submit any three pictures that you want to... ~ share pictures that are beautiful and joyful or depressing and ironic as long as you feel the pictures show the "Joys of Lupus" 

Details:
1) email pictures to me at lalupuslady@gmail.com 
2) subject line "Joy of Lupus" 
3) please include how you would like to be credited in the video at some point in the body of the email in ALL CAPS
4) submit by January 30, 2011
5) by submitting your pictures to mean, you are allowing me to put them into a YouTube video that will posted online and available for the entire world to see. (you know this already...)

Thank you for supporting this and helping me prove that Lupus Awareness is fun!  Now, all you have to do is smile at a camera and say "Lupus!"

Turning your head...

Changing the way you see things can be as easy as turning your head.  After attending two funerals in as many days, I was feeling a bit of "survivor's remorse".  So when I woke up today I wanted to blog about the idea I have for the next Lupus video compilation project.

I was going to ask each "Lupie" that contributed to the "This is what Lupus looks video" (as well as anyone else who wants to contribute to join our growing Lupie/Spoonie community) to share pictures of "what Lupus costs us" or "how have you paid the price for a life with Lupus"-- possibly including pictures of those who have passed of Lupus.  How morbid and sad!  But that is a truth of what Lupus has cost us--and the world--every time another person with Lupus dies.

I thought about the personal price I have paid for "living with Lupus".  Would I post a picture of a baby with a red circle-slash over it, since my Lupus has provided me with extremely low estrogen and I experienced early onset menopause two years ago?  Now, please don't flood my e-mail or comment box with "there is always adoption", because I can't begin to tell you how much money, time, energy and emotion was spent on trying to become a mom that way.   Can you begin to see the negative spiral?  Who has the time?  Not me!  I am living with Lupus and each minute is precious!  So I closed my eyes, turned my head (my neck cracked!) and when I opened my eyes I realized that by shifting my point of view--even just slightly--the next video project could focus on what I call "the joys of Lupus".  How having Lupus in my life makes me appreciate the little things in a constant, yet evolving, way.

Whether you have Lupus or not, maybe all you should do when you feel the negative spiral coming is close your eyes and turn your head.

"This is what Lupus looks like"

I first heard Toni Braxton say the words "This is what Lupus looks like" at the 2010 Lupus LA Bag Ladies Luncheon, I was inspired to show the world the living with Lupus isn't pretty but it is beautiful.  I asked the Lupus community on Facebook and Twitter to share pictures.  Some "Lupies" asked me what kind of pictures did I want? I did not have any guidelines.  I just said " show me what you want to.  I am proud of this video and of everyone who contributed and shared with me, so that together we could show the world ~~ "This is what Lupus looks like"

ALR LA "Walk with Us" to cure Lupus!

ALR Walk in Santa Monica ~ November 13th was a perfect day to take a walk on the beach for Lupus Research. After raising awareness for the Alliance for Lupus Research Walk a few weeks earlier by getting "mic-ed up" for an interview on The Sound FM, a Los Angeles radio station. It was time to take steps for Lupus Research. I strongly support the Alliance for Lupus Research because 100% of every dollar raised goes directly to funding Lupus Research. Robert Wood Johnson started the ALR after his daughter contracted the illness. He wanted to help find and fund the research that will lead to a cure for Lupus. Robert Wood "Woody" Johnson also owns the New York Jets and my husband is an ex-New Yorker and proudly wore his NY Jets shorts and baseball hat supporting the man behind the Alliance for Lupus Research. The Alliance for Lupus Research website is www.LupusResearch.org