Entries in Alliance for Lupus Research (26)


Health Activist Challenges!

I had hoped to write more this month.  I had hopes of using the daily prompts for the 2013 WEGO Health "Health Activist Writer's Month Challenge" to inspire me to post/write more.  Instead, I was busy actually being a Health Activist! (Isn't that essentially what WEGO Health hopes?)  Since a picture is worth a thousand words, here are some glimpses into what my Health Activists activities during April 2013 looked like...

This is the "doodle" for the "Managing Chronic Diseases Better"--one of The 20 Great Challenges facing Health and Medicine addressed at TEDMED 2013.  I was invited to be a Social Media Narrator and Delegate to TEDMED!

Wearing Karen Kane at The Kennedy Center for TEDMED 2013!

As seen at TEDMED 2013: Richard Simmons and me, connecting the Great Challenges! 

Here is a screen grab of me on the TEDMEDLive Stream!  I proudly shared how Richard @TheWeightSaint Simmons is helping change my life.

This is what the screen and TEDMED stage looked like...

Exercising w/ Richard Simmons and Surgeon General Regina Benjamin on stage at The Kennedy Center during TEDMED.  (I'm behind Dr. Benjamin on the left.)

At the Air and Space Museum I met, hugged and posed with the Surgeon General!

Follow @SGRegina on Twitter.  

Another Regina...@ReginaHolliday helped make me TEDMED better because TEDMED 2013 was the first chance to I had to wear my "The Walking Gallery" to a health and medical conference.

The Hive at TEDMED was buzzing through TEDMED 2013!

My TEDMED "Six Word Story" in The Hive!

The "Smart Phone Physical" started with a look inside my ear.  Everything a doctor would need to give you a physical and track your body can be done w/ a Smart Phone!

A "virtual" look at the Ultrasound of the artery in my neck.  "Smart Phone Physical" is a great advance for doctors and medicine.  They also had a blood pressure cuff that attached to an iPhone.

After TEDMED in Washington, DC... I got back to attacking the Great Challenge of "Working Out with @TheWeightSaint" Richard Simmons' Twitter handle.

Then it was time to "Put my L Up!"

The #LHandSign Lupus Awareness Flash Mob Freeze in Hollywood!

Having fun w/ Mat Simpkins @RunningforLupus flashing the #LHandSign!

The debut of the "new" LA Lupus Lady cape after the "L Hand Sign Lupus Awareness Flash Mob Freeze"

Information from Alliance for Lupus Research at the "L Hand Sign Lupus Awareness Flash Mob Freeze."

Watch Out May 2013 - Lupus Awareness Month!!!  LA Lupus Lady is out to make you memorable!


"Goal Keeping"

“If I could do anything as a Health Activist…” and had no constraints or limitations.  Here is where I toss out the "prompt" Why waste time or energy imagining what my life can't be?  When I can use the same time to create "vision boards" or meditate towards what my goals are and what I can do and be.  This life of mine may not be perfect but it is my "Lupus Style Experince" and I am thriving despite living with a chronic condition for over 30 years.

I would love to create and lead “Lupus Style Experience” workshops and travel around the country (make that world!) from big cities to small towns to share the “Lupus Experience” with people who normally would not be able to have access to the educational or wellness resources that a “Lupus Experience” would cover everything a lupus patients needs to know.   The workshop would start with a conversation about coping with the diagnosis and stages of illness (flare to remission to a flare to remission again) to living with lupus.  Stress management will be discussed as the group each receive a foot massage and pedicure.  Depending on the location of the “Lupus Experience” different exercise classes could be offered Yoga, Tai Chi and Low Impact Aerobics or Movement classes (aka No Pole Dancing), because those with Lupus Style like to strut their stuff.  The purpose and goal of the “Lupus Style Experience” would be to assist the lupus patients discover the beauty within them and their own ability to help manage this condition called lupus.  The “Lupus Style Experience” is more than a support group it will be start as a half-day workshop that concludes with nutrition awareness / cooking class and a shopping trip to the market.   The patients go home with more than information and painted toes, they each receive healthy groceries to make the recipes at home.  When I have the time and find the "angel investor" these prgorams could change the world one lupus patient at a time.  (Have you heard of The Butterfly Effect?)

Thinking about my goals as a Health Activist, if I could do anything it would be to share what I know to be true to as many people as possible.  That truth is “lupus awareness is fun but lupus is not.”  If there were no limitations, I would attend more Alliance for Lupus Research “Walk with Us to Cure Lupus” events and I would have a “Lupus Awareness is Fun!” team in every city.  I would participate and hope to speak at health conferences.   I would be able to speak and share my story of transforming from patient to patient/advocate to whoever would listen.  I want to continue to engage and connect within the lupus patient community.   Whether speaking to a member of Congress on Capitol Hill or tweeting a new “lupie” online, I feel blessed and appreciate the gifts of lupus.

At some point my goals for my Health Activism became my reality.  I am doing what I can as best as I can.  To that end I am challenging the actual constraints and limitations to live with  “Lupus Style”.  I am proud to share that I have been invited and will be participating at the 2013 TEDMED 2013 ‘Great Challenges Day” on April 19th in Washington, DC.   I am thinking big and living with flair, who knows what tomorrow will bring but I look forward to it.


Sharing is caring.

One of my favorite phrases is “Sharing is caring.”  That’s what this post (Day 4) for Health Activist Writer’s Month is all about sharing.  Sharing resources…  I am happy to share resources that have worked for me but much like the disease itself, lupus patients tend to find support and resources that fit them on their own.

If I was a newly diagnosed lupus patient (in the United States)… I would want to reach out to one of the big three organizations to help me get a better understanding of this chronic disease the doctor called “Lupus”  Since this is my list, I would suggest that you skip the orange and head over to the purple people.   There is no better place to start than with the Alliance for Lupus Research.

There are a number of support groups available to you, many local hospitals provide resources for those newly diagnosed with chronic illness.  You may or may not find your “comfort zone” immediately – keep searching.  Sometimes, the best support you will find is online.  Whether from one the many Lupus communities on Facebook (shameless promotion time) such as “Lupus Awareness is Fun” or “Friends Against Lupus” there are (thankfully) too many to count and with a little exploring the newly diagnosed “lupie” as Lupus patients call ourselves will be finding support and building friendship with her lupus “sisters” before she (90% of lupus patients are women, so most likely she.) will learn to spell Systemic Lupus Erythematosus.

After the “lupie” gets to know her new normal, she will find that many of her Facebook friends and support team have taken to blogging.  There is a lupus blog for every personality and I don’t want to neglect any of my friends, so when my suggestion would be to ask your new friends which blogs they like.  Next up, I would tell the new “lupie” to search #lupus on Twitter.  That is how my friend and “lupie sister” Tiffany found and met each other.

(Here is Tiffany @TiffanyAndLupus during a Skype session, support can come from anywhere!)

Once the “lupie” connect with a few patients, her desire to advocate and become an activist may take over that’s when I suggest hitting the big guns and connecting with the “Partnership with Patients” community on Facebook

“Partnership with Patients was created in response to Regina Holliday’s experience in attempting to participate in the Partnership for Patients kick-off meeting, a CMS-funded initiative. Regina experience can be read in her post Pecking Order.

This is a friendly group. We will be honest but kind. Please be considerate of others. Remember if you are here you are helping to build a better tomorrow. “

The best part about the Partnership with Patients is the PEN = Patient Engagement Network that @ReginaHolliday has created with “The Walking Gallery” when you go to health care conferences and want a conversation starter, simply wear one of Regina’s painted jackets and the communication flows.  Don’t worry if conferences aren’t for you.  You can become an advocate and activist from the comfort of your laptop.  I would share (and I do) that new patients find a health care chat and “lurk” then join in and you will find yourself welcomed into the health care community.

At this point, I would say welcome to the world of lupus patient advocacy.  If I can help guide you along the way, feel free to reach out and contact me.  May you “find the flair and avoid a flare” as you discover your “Lupus Style.”


The magic of 12/12/12.

Today is December 12, 2012. 12/12/12

Twelve is my magic number.  Not my lucky number but my magic number.  I am too old to believe in magic numbers, but life with lupus has taught me to believe in more than coincidence and circumstance, so I believe in magic numbers, white butterflies and birds on a wire between telephone poles.  There is no logical reason to believe in magic, but I do it anyway.  I think that glitter, sparkle and magic are important elements of life, if one doesn't believe in something special is life worth living?  

The media madness about the Mayan Calendar, is something that I don't believe in.  I feel that we are going to experience a cosmic shift - one where the universe starts to open up to the beauty of magic and nature. You might think that my hope and the joy I receive by believing in magic is strange but the beauty and sense of calm is real and I know that this belief is what makes me "who I am".  If I stay in a hotel and my room is on the 12th floor or ends in 12, I smile and have a good feeling about the stay, is it more than random?  While they aren't as colorful, as a Monarch I believe in the magic of a "white butterfly" and ever since I can remember I feel watched over by the birds on a wire.  

Parents often say "The days are long, but the years are short."  I am not a parent, and am often reminded of that but those who are.  But, my life battle is a struggle to find the joy, beauty and magic despite being diagnosed with a chronic illness.  Today is a day, that seemed so far off... on 01/01/01 do you remember where you were or what you were doing on January 1, 2001?  I do.  For a moment, I thought and wondered if I would be alive on 12/12/12.  Here I am alive and writing, striving to thrive and share my story.  Here we are... December 12, 2012.  I am living with lupus, wondering do you believe in magic?


"Gotta Support the Team!"

There are many parallels to being a die-hard sports fan and someone who suffers with Systemic Lupus Erythematosus symptoms can range from generalized fatigue and weakness to disorders affecting the Central Nervous System, as a dedicated fan of the New York Jets and a woman living with lupus, I can tell you from my perspective that chronic pain associated with lupus is not comparable to the acute sensation of "sports fan stress" but during today's New York Jets football game I could not help but be inspired by how Rex Ryan and the team found a way to tolerate a painful start, despite injuries and endure to find the win.
Whether you are a fan of the Jets or any sports team, I think you'll agree with me and David Puddy (who painted his face like a Devil) because "you gotta support the team."  (Looking at the picture from Seinfeld, I almost see the butterfly rash on Puddy's face.) 
It is December 3rd and I am writing a blog asking you to support my team again.  Because I am participating in the "Virtual Walk" on December 8th, this Saturday.  My team name is "Lupus Style!" wherever you are on Saturday, you can be a part of the team.
In case you are unaware 100% of every donation to the Alliance for Lupus Research, directly supports Lupus Research thanks to the incredibly supportive and amazing Board of Directors.  Because the Board supports the ALR team by paying for all operating expenses, your donation directly supports and funds lupus research.  You gotta support the team.  When you support the Alliance for Lupus Research, you support the team on the path to discovering the cure.