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Entries in Lupus Awareness is Fun (15)

Sunday
May052013

The #LHandSign Lupus Awareness Flash Mob Freeze and me.

The #LHandSign Lupus Awareness Flash Mob Freeze in LA is going viral and you can help share.  But here is a brief inside look from my point of view.

Mat asks me to get involved and help.  I say yes.  Together, we text back and forth and arrange to do a location scout.  Once in Hollywood, we find the perfect pre-freeze place to meet and then Mat starts snapping pictures.  I hear snippets of "the song" and get excited.

 

Next thing, I know I am in WDC's radio studio and on the air sharing the #LHandSign Lupus Awareness Flash Mob Freeze with his radio listeners.  It's all a blur because I was off to Washington, DC to go to TEDMED!

Here's the YouTube of me on the WDC radio show...  http://www.youtube.com/watch?v=BHqESoK5L1Q

Then on Sunday, April 28th shortly after 11AM the Lupus community of Southern California gathered for the Lupus Cloud Meet Up and at NOON for three powerful minutes in front of The Chinese Theater in Hollywood, there was silence as the #LHandSign Lupus Awareness Flash Mob Freeze happened and then Mat Simpkins, of RunningforLupus.com and creator of the #LHandSign blew the whistle and we hugged and then made our way to California Pizza Kitchen for the "after party" benefitting The Purple Rose Foundation.

Thanks to everyone who came out in LA and to you who I know by now is thinking I want to "Put my L up!" so go ahead and take a picture posing with the #LHandSign and share it online.  Instagram, Twitter or Facebook, show your support for Lupus Awareness.

Watch the video... http://www.youtube.com/watch?v=j42m7NsCrJU and "put your L's up!"

 

Saturday
Apr062013

Champion for Lupus Awareness!

Toni Braxton has taught me that when living with Lupus "there are good days and bad days".  Much like the day that Toni Braxton told the world that she had lupus,  I feel that today was "a good day!"

Together with Mat Simpkins we scouted the Hollywood location for the "L Hand Sign Lupus Awareness Flash Mob Freeze" to be held on April 28th! Then, after a nap, I registered for TEDMED 2013!  I've been invited to attend TEDMED on April 19th for "Great Challenges Day" as a Social Media Narrator.  I am beyond honored and excited by this opportunity.  

Before I look forward... let me take a step back and share a "Lupus Awareness" community YouTube project that was inspired by Toni Braxton's empowering quote "This is what lupus looks like".  http://www.youtube.com/watch?v=PX0vS45ntsg&list=UUSeFWMKJBTB5yL9fEHyU9kg&index=8   The progress and forward strides the Lupus community are making together never cease to overwhelm me.  Mat said it best today as we drove across Los Angeles:  "Teamwork makes the dream work."  I am proud to continue my journey and share that "Lupus Awareness is fun!"

Please pardon my brevity, but as anyone living with lupus will tell you sometimes you have to make choices and prioritize.  Happily, I am not neglecting the WEGO Health "30 posts in 30 days" challenge, but I am living up to my end as a "healthy" Health Activist by being honest with you and with myself about my physical limits before I reach the point of flare.  That is what living with "Lupus Style" is after all - discovering the flair.  The teams have played, March Madness became the Final Four (now the Final Two) and though it is almost midnight East Coast Time I feel like a true champion for Lupus Awareness.

Thursday
Nov292012

Accomplishing "Lupus Style" in 2013

How am I supposed to think about plans for 2013, when I am not done with November's National Health Blog Post Month #NHBPM for WEGO Health yet?  If there is anything that John Lennon and Systemic Lupus Erythematosus (SLE) have taught me it is that "Life is what happens while you are making other plans" yet I am making plans.  Looking forward is an important part of my life with lupus.  I look forward and plan.  I know now that in January, Lady Gaga is bringing her Born This Way Ball to Staples Center and I am a "Heavy Metal LOVER" Monster!  I have already started working out so I can dance all night.  I hope that exercise classes (with Richard Simmons, @TheWeightSaint) will help build up my stamina.  Dancing around the living room listening to Lady Gaga's songs so I can sing every word along with her.  (I love the "living room", don't you? The idea of room that is just for living.)

The one thing is that I would continue from 2012 into 2013 is to lead my team "Lupus Awareness is Fun!" as we walk at MetLife Stadium in New Jersey and along the beach in Santa Monica, California and in 2013, I want to lead a team of walkers in New York City!  I wanted to lead three walk teams to support the Alliance for Lupus Research "Walk with Us to Cure Lupus" in 2012, but I only led two.  I want to do more for the lupus community and in 2013, I will accomplish my goals.  Because like the Alliance for Lupus Research say "Together, we can cure lupus."  I may not be a researcher or scientist but as an advocate for awareness and research maybe the contributions of someone who supports the "Lupus Awareness is Fun!" team will be the crucial funding to discover the next innovative therapy.  Since I don't know whose dollar is going to be the one, the crucial one dollar that helps take lupus research one step closer to a cure.  I walk and if I walk in three cities in 2013, I will walk in four cities in 2014. Until there is a cure for lupus, I will walk.

Pictured here with Tiffany Peterson on the field at MetLife Stadium (New Jersey) in May!

 

On stage at the State of Now 2012 "Lupus Chat, Lupus Style." at the 92nd Street Y, New York in June.

Kicking it with the Los Angeles "Lupus Awareness is Fun!" team in Santa Monica, California in November! Wearing my purple boots, tights, sequin skirt, and the cape attached to my purple jacket!  You might think that I am addicted to sharing that 100% of all donations to the Alliance for Lupus Research directly fund Lupus Research but until there is a cure, there is the ALR.  http://lupusresearch.org/

One step at a time for the Alliance for Lupus Research. Other plans for 2013 that should have "passion coliision" warning signs... I booked lunch reservations at Joanne's Trattoria for World Lupus Day, I am so glad that Travis is looking forward to hosting us again.  I hope that I will be chosen by @jeffpulver to share (speak) at the State of Now 2013 on stage at the 92nd Street Y in June.  I can't wait for these and other chances to share my story at conferences, online and on TV.

Now it is time to take a breath and a drink of water, ramping up to share how my "passions will collide" in 2013 is fun and making me thirsty!

Saturday
Nov242012

"Lupus Style!" Shonda, please "use lupus".

Laughter is good medicine, but lupus is no joke.  Still, I laugh hard and smile when lupus is used as the punchline in a TV comedy.  I will never forget and still chuckle at the rerun of "Seinfeld" when George Constanza says "Lupus? Is it Lupus?"  Everyone knows that "House" used lupus as a possible diagnosis many times; it was finally lupus in Episode 408, aptly titled "You Don't Want to Know".  Lupus was still used on the show and I am grateful because the show raised awareness.  Lupus is more common than cystic fibrosis, multiple sclerosis, muscular dystrophy, leukemia and cerebral palsy, but suffers more than any of these diseases from lack of awareness.  "Lupus Awareness is Fun!" so let's begin...

I would submit an idea to Shonda Rhimes to do an episode, or even better a story arc, featuring characters with lupus.  The question would be which show--after all, Shonda Rhimes is Executive Producer of three current ABC dramas.  The obvious choice would be to ask her to include lupus on "Grey's Anatomy".  While I know that "Grey's" has "used lupus" previously, I would suggest a few storyline options.  One idea has Dr. Christina Yang meeting a cardiac patient, a young black woman whose positive attitude and lupus diagnosis has encouraged her to create and participate actively in an online community (support group) of lupus patients.  When her online friends travel across the country to have an IRL "MeetUp for Amanda" (shameless plea for the lupus advocate/patient/activist to be named after me!), Christina's usually stoic demeanor is softened and she realizes that healing the heart can be done with more than a scalpel.  Or Bailey could have a lupus patient whose mother is not the "health proxy", as the patient has decided to elect a non-family member to make decisions in the event that she cannot.  The issue is that currently the patient is making EOL and QOL life choices that the parent and family disagree with and the lupus patient just wants to know that her wishes will be fulfilled if and when the time comes.  Another idea for "using lupus" could be that Meredith has a lupus patient who was on a trip to Seattle when the stress of travelling caused the patient to "flare" and there is difficulty attempting to get her patient records--it is a long holiday weekend or legal holiday.  When the patient hears of this, she pulls out her tablet and has her complete EMRs and other health apps online that have monitored her medications and lab results for the last two years.  All of the resources and information are available to Meredith who without this information would have done a "invasive and unnecessary" procedure.  Instead, after IV fluids and rest,the patient is back to normal; well, normal for a lupus patient on vacation in Seattle who spent half her trip in the ER of Seattle Grace!

I had always hoped that Shonda's soon-to-be canceled show "Private Practice" would have had a storyline on the benefits of alternative therapies used to help control and manage the chronic pain associated with lupus (and other conditions).  It would be an educational and entertaining way to raise lupus awareness. The "Private Practice" episode (or story arc) would have demonstrated the benefits of combining acupuncture, "talk therapy" and the use of herbal supplements to control and manage the pain in a patient suffering from mild lupus symptoms  This would have provided a new resource for those that suffer needlessly because their Health Care Provider is unaware of how these treatments can relieve pain and help improve the Quality of Life in patients lives.   Showing how the alternative therapies work on an individual patient on a single episode (or storyline) would have raised awareness for alternative methods of controlling chronic pain.

 

However, I would love it if Shonda found a way to incorporate lupus into my new favorite drama, Scandal. As a lupus patient/advocate/activist and "Warrior", I enjoy being a "Gladiator" (what "Scandal" fans call themselves) and would find incredible joy and satisfaction if Shonda and the team of Scandal writers worked "lupus" into the storyline.  One suggestion I would offer them is to "use lupus" as a way for a member of Congress who is caught "having an affair" with a prominent DC physician by a TMZ-like journalist.   Perhaps the journalist who captured the compromising photos in the hospital conference room has a young daughter who suffers from lupus and Olivia Pope comes to the rescue, telling the slimy paparazzo that both the Congressperson and physician will do more to help the future of lupus research if their reputations are not hurt by the scandal that releasing those photos would cause.  The photographer needs the money to pay for his daughter's rising medical bills and Olivia Pope and her team manage to have the physician and the Congressperson create a foundation for lupus patients who cannot pay for treatment.  The Congress member joins and supports the Congressional Lupus Caucus. If dreams could come true... there is a PSA at the end of the "Scandal" episode, asking all members of Congress to join the Congressional Lupus Caucus and all Gladiators to join the fight to cure lupus by supporting the Alliance for Lupus Research.

Please join me and tweet @ShondaRhimes ask her to "use lupus!"  Please tweet @ScandalWriters and ask them to pitch and "use lupus!"  Whether or not, @ShondaRhimes and the @ScandalWriters "use lupus", you can ask your member of Congress to join the Congressional Lupus Caucus.

  written for Day 24 of WEGO Health's National Health Blog Post Month. 

Wednesday
Nov142012

Just say no to negativity.

There's a saying that goes "Never Complain.  Never Explain.  Never Give Advice."  Yet today's prompt is asking me to give advice for dealing with negative feedback in my community so "Never, say never."  Welcome to Day 14 of WEGO Health's National Health Blog Post Month...

As someone who has recently faced adversity for my method of sharing and advocating for Lupus Awareness, I feel compelled to share what I have learned with others.  The hardest thing is writing this post... in fact, I had planned a complete detailed post for the alternatte prompt "My life is reality show." in order to avoid addressing the issue of negativity in the community.  While I was participating in yesterday's WEGO Health weekly #HAchat on Twitter, I decided to scrap the reality show, which happens a lot in the TV business and start thinking about the tough stuff.

Whether your negative feedback comes from an individual or an organization, my advice is the same.  Stay focused on your goals.  Stay true to your heart.  Don't let anyone silence your voice.  Perhaps the person is having a hard day, or in a lot of pain.  I strive to feel empathy.  Having had my share of "bad days" and pain, I understand.  The most difficult negativity for me is when the attacks are in the form of passive aggressive tweets.  If you have something to say about me, you should have the courage to say it, honestly.   My goal is to rise above it.  To soar and find my wings of "flair" - it is not easy.

All I want to do is share that "Lupus Awareness is fun, lupus is not."  A few people have complained that I am too positive.  I am not, ask my husband.  I simply like to share and celebrate what I can, when I can, how I can.  I choose to focus on "Lupus Style".  I am often get empowered when I read or hear stories of other lupus patients or conditions through WEGO Health's #NHBPM or #HAchat.  My advice would be to participate in a #HAchat, there you will find support and a community of friends.  When the so called "haters" show up; stand up and rise above it.  Just say no to negativity.

The stress of negativity isn't good for anyone, especially those with chronic conditions.  I am bewildered when someone who has the condition and knows this intentionally puts negativity out there (on the internet).  My bouts with negativity have made me stronger.  I know that some people want to put duct tape on my mouth and unplug my connection.  I won't back down.  I am who I am - a lupus patient whose voice will not be silenced.