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Entries in Lupus Awareness Month (3)

Tuesday
May292012

The Alliance for Lupus Research Walk Day at MetLife Stadium!

"Lupus Awareness is fun" and "I love it when my passion collide" two quotes that I can't say often enough.  Well on May 12, 2012, I had a wonderful day and my passions collided on the field at MetLife Stadium.  The Alliance for Lupus Research New Jersey "Walk with Us to Cure Lupus" took place at the home field of the New York Jets (okay, the New York Giants play football there too.)  I was smiling all day... okay if you have been reading my posts about my adventures with Tiffany (@TiffanyAndLupus on Twitter) then you know I had been smiling long before I woke up on the morning of May 12th.  The reason i traveled 3,000 miles was to walk with the Alliance for Lupus Research in New Jersey at MetLife!

with Tiffany in her butterfly wings, me in my purple cape.  "Lupus Awareness is Fun."

First things first, before we got on the field we dropped off our donations that were collected off-line, aka in person!  Every donation made to the Alliance for Lupus Research directly supports Lupus research because Woody Johnson and the Board of Directors funds all administrative and operating costs.

If are JETS fan like me, you know when a great play happens on the field that the players will "fly like a Jet!" to demonstrate their joy.  It was amazing for me to "fly like a Jet" and fly on a jet for the ALR!

The best thing about living with Lupus is the friendships I have developed within the Lupus community online.  There is nothing so special as hugging a friend and "Lupus Sister" in person.  Imagine the strength and support we felt gathering together in New Jersey to support the work of the Alliance for Lupus Research it was truly amazing.

Tiffany Peterson, Kelly Dawn Kelly and me (Amanda Greene) ~ three Lupus Ladies of Twitter, follow us @TiffanyAndLupus @KellyFund4Lupus and @LAlupusLady see you online or at the next ALR Walk!

Having my sister-in-law and niece joy my team on the field was incredibly fun!  Never underestimate the power of family love and support.  Every Lupus patient needs a support system, my team showed up and walked with me on May 12th, but they are there for me 365/24/7.

To enjoy the full album (There are a lot more pictures, I went crazy on the "Panda Cam" as my niece would say.) of my photos from the 2012 New Jersey  Alliance for Lupus "Walk with Us to Cure Lupus" event held at MetLife Stadium on May 12th. Click the link and enjoy... https://www.facebook.com/media/set/?set=a.3299085715203.2125917.1209711262&type=3

To learn more about Lupus from the Alliance for Lupus Research http://www.lupusresearch.org/about-lupus/about_lupus.html

To donate to my next Alliance for Lupus Research Walk ~ held in New York City on October 2Oth, as an incentive for you to donate to a walk that does not happen until October for any donation received for me and my NYC ALR Lupus Walkeffort made through June 1st! My husband is going to match it!  Every dollar truly counts (disclaimer up to $365) http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/75370776?px=1925494&pg=personal&fr_id=3010

Enjoy the rest of Lupus Awareness Month!

Hugs and Smiles,

Amanda

 

 

Wednesday
May162012

World Lupus Day with Wendy Williams!

I hope you had a Happy World Lupus Day on May 10, 2012!  I was in New York City to celebrate World Lupus Day on May 10, 2012.  I was lucky enough to be feeling good and was able to ask my friend and fellow "Lupus Warrior" Tiffany to join me in the festivities.  Tiffany (aka @TiffanyAndLupus) joined me at the hotel on Wednesday night.  That's when the #LupieSlumberParty began.  (more in a later post...)

The morning of World Lupus Day, my husband was able to get us into see "The Wendy Williams Show. " Tiffany made a sign (seen below) that we carried with us throughout our World Lupus Day adventures.                                                                                                                                                                                             

Once Tiffany and I were in our seats "The Wendy Williams Show" began, it was a great episode with Wendy's Hot Topics and Audra MacDonald.  Her other guests included Andy (@BravoAndy) Cohen who talked about his new book, "Most Talkative" and he played "Plead the Fifth" the game he usually asks the guests on his show "Watch What Happens Live" on Bravo!

However, before the show went live Tiffany was chosen from the audience to "get down and dance" with Kevin (the audience warm-up guy and hilarious entertainer) and "his boo" on stage.  How low can she go? C'mon Tiff... lower, we know you can go lower.

The Alliance for Lupus Research gave away special tote bags to the Researchers and Scientist who participated in the "Collaborating for a Cure" event.  After telling the Alliance for Lupus Research that we would be attending the live show the next day, they gave me a bag to give to Wendy.

The only time we were allowed to "shoot" Wendy was after the show... Wendy looked fabulous and her shoes (unphotographed, damn.) were amazing.  If you ever get the chance, I suggest you get on line and attend a free taping!

After the show, Tiffany and I were on our way back to the hotel, for a short break before lunch...

Stay tuned for more World Lupus Day fun...

"Lupus Awareness is Fun.  Lupus is not."

Saturday
May052012

Guest Post: "I love someone with Lupus."

I'm the guy sometimes referred to as "Hubby"; maybe you've seen me mentioned once or twice in @LAlupusLady's Twitter timeline.  I have the honor of writing a Guest Post in honor of Lupus Awareness Month and my wife, the "super hero" you know as "LA Lupus Lady."  I am writing this post because "I love someone with Lupus."

Lupus has been a part of my life for almost nine years; the anniversary of our first date is coming up.  One night not long after that amazing night, while enjoying one of the perks of our new relationship -- my satellite TV--, Amanda seemed a bit distant.  She looked at me with pouty eyes and said, " I have something to tell you -- I have lupus."  My heart skipped a beat.  What little I knew about it at the time wasn't very good--a few years earlier, a business colleague died from it.  She then told me a bit more about her specific case.  It was mild.  She was diagnosed in her teens and she had the best possible medical care and doctors one could hope for.  She then said for the first time a phrase that has become a life mantra -- "I may have Lupus, but Lupus doesn't have me!"  She knew that she has dropped a bombshell on me, so as she left that night she looked at me sadly and said "If you don't want to continue seeing me, I will understand, but let me know."

She had encouraged me to go online to learn more.  After she went home, I read all I could find for hours.  I learned more about the symptoms, the flares, but most of all, the fact that Lupus can be fought, if only for one day at a time.  I read some patient testimonials on WebMD and I saw their spirit and they mirrored hers.  I knew at that moment that I was blessed to have Lupus in my life -- for in Amanda I saw true perseverance, strength and resillience.  It gave perspective to my own life struggles, where the stakes were far less dramatic.  It helped make me realize that not only was Amanda the most uniquely intelligent, savvy and beautiful woman i had ever known, but those qualities came in large part out of her indomitable determination to not let Lupus have her.  Instead, we have each other.

In our seven and half years of marriage, I've shared many passions with Amanda -- for example, against her instincts, she not only became a baseball fan but indeed got to share my last-ever game at my boyhood shrine, Shea Stadium, the former home of the New York Mets.

None of the journeys through the worlds that I have invited her into can compare to the daily journey of the world of living with Lupus.  The fact that she has become so prolific in sharing her experience, strength and hope with so many others make me exceptionally proud and love her that much more.  I am glad that you, dear reader, have come on board as well.  

Here's to health and happiness, yours and ours.  

@SteveLeblang

aka Mr. @LAlupusLady