Entries in Lupus Awareness is Fun (15)


i am a "Voice of the Lupus Community"

Have you heard me and my friends speak as a "Voice of the Lupus Community"on the ALR Podcast yet? What are you waiting for...

Here is an extended conversation led by Courtney Love of Alliance for Lupus, where we talk about the impact of the Lupus community connects and communicates using Social Media.  I was proud to join Tiffany Peterson of the Facebook page "Friends Against Lupus" @AgainstLupus and @TiffanyandLupus on Twitter. Geoff Thomas (who lives in Australia) of the Lupus Magazine @LupusWorld and rode his bike across the United States to raise funds for the ALR and awareness for Lupus.

Once you click on the link below, make sure to listen to Part 1 of the podcast first... then listen to Part 2!  I am biased but I think you will learn a lot and hopefully be inspired to #GetInOnIt with the Alliance for Lupus Research!

To join the conversation, follow @Alliance4Lupus on Twitter, "Like" the Alliance for Lupus Facebook page and use the hashtag #GetInOnIt when you tweet ~ to support the Alliance for Lupus Research with a $10 donation Text LUPUS to #85944

Yet another reason why I believe that "Lupus Awareness is Fun."


Speaking up about Lupus Awareness...

Long time no blog, but I have been keeping busy on my quest to share that "Lupus Awareness is fun and important!" In case you missed it I have been raising my voice and shared my story on Winning Life Through Pain on BlogTalkRadio earlier this year...

From Wonder Woman to LA Lupus Lady, hope you enjoy this interview...


Walking for Lupus ~ my new "Normal"

Most people take it for granted that they wake up every morning get out of bed and go about their morning routine with no aches or pains.  Waking up with pain is part of each day of my life.  Each one of us has a perception of what “normal” looks like.  Living with Lupus is realizing that your "normal" is unlike anyone else's--even another patient suffering from Lupus.  Each Lupus patient is unique and that is why funding research is so vitally important--so that together, we can eventually prevent, treat and cure Lupus.

After rereading Kellly Cutrone's book "Normal, Gets You Nowhere" I have come to realize with my “normal” (living with Lupus),  I may never know what I am going to get.  So why wait?  I am choosing to be who I am while I can.  I have chosen instead to be an advocate and patient support by using Social Media to share that "Lupus Awareness is Fun, because it is important!"   My passion is contagious, but Lupus is not.

Before the LA Alliance for Lupus (ALR – walk, I went all over the west side of Los Angeles, covering the walls of local coffee shops and any place that had a bulletin board.

Then, on Halloween, I chose to “trick or treat” for the Alliance for Lupus Research.  As “LA Lupus Lady”, I an extra raised $57 on Halloween (dressing up makes it worth it) for my ALR Lupus Walk team “Lupus Awareness is Fun!” 

The bonus--and my favorite part of raising money for the ALR--is that 100% of every donation directly funds Lupus Research, thanks to the Board of Directors who fund all the administrative and fund-raising costs of the ALR.  That is virtually unheard of in the charitable community.

Last Saturday, November 12th at Crescent Bay Park in Santa Monica over 1,000 people gathered in celebrating the Los Angeles Alliance for Lupus Research “Walk with Us to Cure Lupus” event.  I was proud and honored to join Natalina Maggiano in holding the ribbon to start the walk.  Little did I know that I would be leading the Lupus Walkers along the famous Pacific Ocean path underneath the Santa Monica Pier.  I have never felt so good to be a Lupus patient in my life.  Advocating ffor Lupus research on Capitol Hill comes in as a close second--on this cloudy day in November, the palm trees were swaying and it was magical to be a part of the ALR team.

After the Lupus walk, when my purple boots and “LA Lupus Lady” cape were safely packed away.  the epsom saIt foot soak was done and I was tweeting with Tiffany of @AgainstLupus; we were talking about how it takes three days of prep and three days of recuperation to fully recover from a Lupus Walk.  I get especially excited before an ALR Walk event and tweet too much--too much energy is exerted before the first step is taken, which leads to less sleep.  That is not a good thing for a Lupus patient when you are trying to conserve your energy for a “Big Day!”

I know that this blog post is only a week late… but if you think about it, that's not bad for a Lupus patient recouping from an ALR Lupus Walk and dealing with family issues.  By the way, if you could send some prayers, meditations and healing vibes for my Grandma.  I would appreciate it.

Friend or Follow the Alliance for Lupus Research on Facebook and on Twitter at @Alliance4Lupus for the latest Lupus updates and information.  #GetInOnIt is the Twitter hashtag that that ALR uses.


Happy November!

Yesterday, I "trick or treated" for the Alliance for Lupus Research... I dressed as "LA Lupus Lady" a caped crusader for Lupus Awareness.  I figured there was no better costume for Halloween and I sought donations for "Lupus Awareness is Fun!" my walk team.  The LA "Walk with Us to Cure Lupus" Alliance for Lupus Research Walk is taking place on November 12th and I thought that "trick or treating" for Lupus would be a great way to jump start my not so subtle countdown to the walk.

So I went to my doctor's office with posters promoting the upcoming walk in my "LA Lupus Lady" costume and asked for support.

This morning I went to The Sound FM to represent the Alliance for Lupus Research on the Public Affairs program 5900 Wilshire! Talking about the details of the Lupus Walk with Us to Cure Lupus event was fun but sharing that 100% of every donation to the Alliance for Lupus Research directly funds Lupus Research was my favorite part of the interview.  

Though I didn't wear my cape to the radio interview, I channeled my Lupus Awareness crusader and shared my pasion.  Happy November!

If you want to support or join my team, it is as easy as clicking the link.


Lupus Awareness is Fun in New York City!

More #140conf blog to come but just in case you missed it...(Mom, this is for you!) Here is The Lupus Ladies of Twitter panel at the NYC 2011 #140conf


Christine Miserandino, @bydls Creator of the #spoonie hashtag and author of "The Spoon Theory"

Kelly Dawn, @KellyFund4Lupus Facebook Lupus Group moderator and she runs the Kelly Fund for Lupus

Brenda Blackmon @BrendaBlackmon Mom of Kelly, journalist and author of A Mom's Story

and me!

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