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Entries in lupus (127)

Thursday
Apr022015

Happiness is... 2015 #HAWMC Day 2

"Being happy doesn't mean that everything is perfect.  It means that you've decided to look beyond the imperfections."  Unknown

Today's Prompt: Key to Happiness What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why.

Participating in the 2015 Health Activist Writer's Month Challenge brings me joy and happiness.  As a woman with Lupus (and other autoimmune conditions), I am simply glad that this Spring I am strong enough to join the WEGO Health Community.  This past year has been full of life, death, new and continuing medical concerns as well as finding my voice as a Healthcare Activist and a lot of music, mostly jazz.

Living with Lupus for 33 years has taught me to appreciate the simple pleasure of each day and celebrate the struggles of life.  Every day is a new opportunity to find my smile.  People have actually told me that if they were diagnosed with my diseases, they would wish they were dead.  Well, I am determined to strive and thrive despite being diagnosed with Lupus, Fibromyalgia, Arthritis (Rheumatoid and Osteo), Antiphospholipid Syndrome and most recently IBS.  Being a patient patient has not always been easy and my brother helps me realize that laughter is better than the alternative.

I wish I was a locksmith and had the master "key to happiness" instead I toil with inflammation, pain and fatigue.  Focusing on the joy of music instead of the ailments helps me cope and smile.  As I have said before "Smiles are contagious.  Lupus is not."

Sunday
Oct272013

#HAWMC 2015 Lupus Style.

"What is success? I think it is a mixture of having a flair for the thing that you are doing; knowing that it is not enough, that you have got to have hard work and a certain sense of purpose." Margaret Thatcher

I want to get back to writing and sharing on this blog and WEGO Health's "Health Activist Writer's Month Challenge" (#HAWMC) seemed like a great opportunity to kick start me back into the swing of things.  Being honest and revealing is not easy when the truth is filled with chronic pain, fatigue and a finding the flair while avoiding a flare, what I call "Lupus Style. 

Realizing it has been a long time since my last blog, 2013's Lupus Awareness Month had just begun and I had recently participated in my first Flash Mob for Lupus Awareness in Hollywood, organized by Mat Simpkins of RunningforLupus.com aka @runningforlupus.  I don't plan on sharing a complete update now.

No fooling, the prompt for today said "Wordless Wednesday" and suggested posting a selfie to demonstrate my excitement about participating in WEGO Health's 2015 #HAMWC!

 

 

 

 

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!"

 

Tuesday
Apr302013

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!

Saturday
Apr132013

Day 13 ~ LUPUS STYLE

Health Activist Writer's Month Challenge prompt for today. Day 13 Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

LUPUS STYLE!

Lupus is…

Lousy

Unrelenting

Painful

Ugly

and

Sucks.

Lupus made me realize… I am

Strong

Tough

Youthful

Living

and

Empowered.