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Entries in Lupus Awareness is Fun (15)

Monday
Nov122012

2012 LA Alliance for Lupus Research "Walk with Us to Cure Lupus" ~ Lupus Awareness is Fun!

One step at a time; together we walked. On Saturday, November 10th, I walked and lead the "Lupus Awareness is Fun!" team.   The Los Angeles "Walk with Us to Cure Lupus" surpassed goals and raised more than $140,000 for the Alliance for Lupus Research.  Without the sponsors and the Board of Directors, I wouldn't be able to tell you that 100% of every dollar raised is directly funding lupus research--but this is the ALR we are talking about so I can!  That's right, 100% of every dollar raised is supporting lupus research.

One year at a time, until there is a cure for lupus, I will lead a team and support the "Walk with Us to Cure Lupus" event.  This year for the first time my mom and brother joined "Lupus Awareness is Fun!" and I am grateful to them and all the members of my team.  I appreciate my husband Steve and my friend Scott who have been here before and year after year come back to support me and as Scott says for the Walgreen's water.  Thank youtoo to Al and Diane, who joined my team and supported me and my mom by walking and generously supporting Alliance for Lupus Research. 

   The "Lupus Awareness is Fun!" team is more than those who walked but those who gave as well.  I know that there are many causes and charities seeking your support and I am truly grateful that you chose to support mine, the ALR.   With your help we are closer to a cure.  Thank you to Steve's co-workers at GSN, as well as Aaron Paquette, Mickey Langdon, Ingrid Birmingham, Grandma Idella, Heather Grace, Wendy Abrams, Beth Herzhaft and the other friends who donated to our team. 

 

Sharing is caring.  It isn't too late; you can still support me and the team "Lupus Awareness is Fun!" http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign?px=1925494&pg=personal&fr_id=2990 

Enjoy more photos of the event and my team... https://www.facebook.com/#!/media/set/?set=a.4418558774893.174106.1016580826&type=1

(Better late than never - my Day 10 post for WEGO Health's National Health Blog Post Month!)

Thursday
Nov012012

Here "WEGO" National Health Blog Post Month...

November is WEGO Health's National Health Blog Post Month and that means in addition to tweeting too much, I will be blogging as well.  National Health Blog Post Month (also known as #NHBPM) is a month dedicated to the "Health" blogger.  Every day WEGO Health will provide "prompts" and each day online health leaders. bloggers and anyone who writes to about Health can participate.  (Full details can be found... http://blog.wegohealth.com/2012/10/19/join-national-health-blog-post-month-2012/)

Today's "prompt" ~ Why I write about my health.

I do more than write about my health I actively participate online and off to raise and support Lupus Awareness.  Yesterday, for Halloween I dressed as "LA Lupus Lady" - dressed in purple tights, boots and gloves.  Along with a purple sequin skirt and bright cape, I did more than "trick or treat" I shared one of my favorite sayings... "Lupus Awareness is fun, lupus is not."  My passion for raising Lupus Awareness stems from knowing that educating others about lupus is one way that I have control over my condition.

I share my story about living with lupus whenever and wherever I can.  Whether I am "Friend of the Week" for The Ricki Lake Show's Friends of Ricki https://www.facebook.com/pages/Amanda-LA-Lupus-Lady-Greene/278896785541133?ref=hl#!/friendsofricki or walking with my niece at a "Walk with Us to Cure Lupus" event at MetLife Stadium for the Alliance for Lupus Research.http://www.lupusresearch.org/ and telling her how lupus effects my life or planning our Halloween costumes.  I feel that by openly talking about it, she will know that I am not afraid of my disease; that "I may have lupus, but lupus does not have me." Here is a link to a post I wrote about being "Enjoying a Long-Distance Halloween" for Savvy Auntie. http://savvyauntie.com/ExpertiseDetails.aspx?GroupId=112&Id=3185&Name=Enjoying+a+Long-Distance+Halloween#.UJKairjZOAg.twitter 

Halloween is over and it is time to change my outfit.  Instead of wearing my purple outfit and cape, Today I will be celebrating the 10th Anniversary of Lupus LA's "Bag Ladies Luncheon" http://lupusla.org/  I have been a lupus patient living in LA for over 29 years.  I look forward to "covering" the event as a member of the WEGO Health Press Corp and patient supporter of Lupus LA. 

I am excited about the "prompts" and hope that by writing about lupus during NHBPM that in a small way I can educate, inform and being somewhat entertaining during the month.  Here we go...

Tuesday
May082012

True Life Tuesday ~ Happy Lupus Awareness Month!

Happy Lupus Awareness Month! "You think you know, but you have no idea how truly excited I am to be heading to the East Coast to celebrate Lupus Awareness Month."  More specifically, I am heading to New York City for World Lupus Day and on May 12th I will be walking at MetLife Stadium in New Jersery with friends and family to support the Alliance for Lupus Research. http://lupusresearch.org/

At the beginning of May to celebrate Lupus Awareness Month, the ALR started a tumblr page and I am doing cartwheels (not literally) and jumping for joy (literally) Tumbling is fun and another way to connect using Social Media, follow the ALR tumblr page.   http://allianceforlupusresearch.tumblr.com/  World Lupus Day (May 10th!) is the one year anniversary of the ALR's "Get In On It" campaign.  Use the #GerInOnIt when you are on Twitter and head to the Alliance for Lupus Research Facebook Page and "Like" them today. https://www.facebook.com/#!/allianceforlupusresearch

Personally, to share that "Lupus Awareness is Fun" this Lupus Awareness Month I started a Facebook Page https://www.facebook.com/#!/LupusAwarenessIsFun I hope you like it.  I am still figuring out how the Facebook Page will grow and develop, but together the community will help.  I was really inpsired to create my Facebook Page after seeing the power of the Facebook Pages of the Alliance for Lupus Research and WEGO Health.

WEGO Health was the reason I blogged every day in April, they support the Health Activist Community and this post is their fault.  Thank you just doesn't cover it so to help me thank me. Like the WEGO Health Facebook Page https://www.facebook.com/#!/wegohealth  Did you catch the #HAroundtable for @wegohealth that @TiffanyAndLupus and I had to shine the spotlight on the Lupus blogging community.

This Sunday marked the first ever #LupusChat on Twitter.  @Lupus_Chat is moderated by @TiffanyAndLupus.  I was happy to be a part of the premiere chat and look forward to future chats.  Let's talk about Lupus.  The next chat is Sunday, May 13th at 3pm EST/12pm PST topic will be talking coping with Lupus and Motherhood issues in honor of Mother's Day. https://twitter.com/#!/Lupus_Chat

Thanks to everyone who is participating in sharing Lupus Awareness around the world.  I am grateful to the #chronicallyawesome @julianna12369 on Twitter of http://www.whatthejules.com/ and hubby @SteveLeblang who got Lupus Awareness Month started right with a wonderfully emotional guest post.

Lupus Awareness is Fun. Lupus is Not.

Happy Lupus Awareness Month!

Amanda

Thursday
Apr262012

Lupus Awareness is Fun!

Anyone who follows me on Twitter knows what my tagline is.  If you've been reading my posts for WEGO Health's Health Activist Writer's Month Challenge you know what it is.  My tagline captures my passion and purpose simply put "Lupus Awareness is Fun!"

On Twitter, I will use the hashtag of my tagline #LupusAwarenessisFun.  The truth is that "Lupus Awareness is fun, but living with Lupus is not"  I know and have lived with Lupus for long enough to discover the (many) joys of Lupus.  Sharing my story and talking about Lupus is not as chic or fabulous as talking about Fashion and the latest color for Spring/Summer but when I share that "Lupus Awareness is Fun" I feel that my attitude will encourage positive sharing and spark a conversation about Lupus, funding Lupus Research and supporting the Lupus community.

"Lupus Awareness is Fun!"  I will be sharing my tagline on the 140 Character Conference stage as part of the "Return of the Lupus Ladies" panel on June 20th at the 92nd Street Y! http://nyc.stateofnow.com/ If you live in or around New York City, I hope to see you there.  Save money and get your tickets soon.  "Early Bird" ticket pricing ends May 4th.  Make your plans to be a part of the #140conf community.  The #LupusLadies are @bydls Christine Miserandino and @TiffanyAndLupus Tiffany Peterson.  See why I feel that "Lupus Awareness is Fun" and how the Lupus community finds and shares meaning in the State of Now!

http://nyc2012.stateofnow.com/

http://twitter.com/#!/search/%23LupusAwarenessisFun

Thank you for reading about my tagline and I hope that together we can share that "Lupus Awareness is Fun!"

Monday
Apr022012

Quotation Inspiration for #HAWMC

This post is part of my 2012 WEGO Health #HAWMC Health Activist Writer's Month Challenge.  Today's prompt ~ Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

The quote/affirmation that inspires me comes from Shakti Gawain. "Everything is unfolding perfectly." The simple and complex statement is a favorite quotation of mine.  What touches me most about this quote is the idea that when there seems to be no logic or sense to what is happening in my life, no matter what happens, there is a plan and the journey is one to be enjoyed.

When I was first diagnosed with Lupus, it was Louise Hay's "You Can Heal Your Life" that helped me realize that attitude plays an important and vital part in the path of your life, in my case the path is living with Lupus.  I find it incredibly powerful to know that Louise Hay is online and still active in the Wellness community.  Find Louise at http://www.louisehay.com/ and on Twitter @LouiseHay.

As a student at San Francisco State University, I "found" (or discovered) the work of Shakti Gawain!  Her book, "Creative Visualization" is (and has been for over 25 years) an international best seller.  It was while reading Shakti's book "Living in the Light" that I recognized the power of intention and positive self-talk would be essential tools in helping me create my life with Lupus.  "Everything is unfolding perfectly."  The quote captures the prospect of optimism that despite the bumps along the road of life, in the long run we have the power to create and control the life we want.  

It was a magical day when I stopped into The Booksmith on Haight Street in San Francisco and found "Reflections in the Light" Shakti Gawain's book of affirmations.  Each day of the year has a "thought for the day" and affirmation to help guide the reader towards the joy that is right in front of them.  I, for one, often find myself needing the gentle reminder (or "nudge") that Shakti's words provide.  Whether it is "Everything is unfolding perfectly." or another of Shakti's inspiring statements of empowerment, I find comfort, hope and strength from the pages of her books. 

If you are inspired by the quote and want to discover more about Shakti's work, I suggest you explore her website http://www.shaktigawain.com/ and follow her on Twitter @ShaktiGawainOne ~ I wish you well and hope that you realize no matter how difficult the circumstances may seem, that "Everything is Unfolding Perfectly."

In happiness and hope,

Amanda