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Entries in HAWMC (34)

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."

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.

Friday
Apr122013

How many calendars is enough?

I am honored to be invited to be a participant in the 2013 TEDMED "Great Challenges Day" and I am striving to create 30 posts in 30 days for WEGO Health's Health Activist Writer's Month Challenge.  I feel like a true #Gladiator this month.  I am #ScandalObsessed I admit it.  The best "virtual" medicine for me often comes in the form of a tweet or retweet from a cast member.

Tonight after a busy day of finalizing my TEDMED plans, I put "California Years" (a Jill Sobule CD.) on full blast and somehow made it to Slimmons Studio where I worked out with Richard Simmons in Beverly Hills.  Happily exhausted, I grabbed a greek yogurt for dinner and waited patiently (aka "watched the rerun of a Grey's Anatomy episode") for the repeat of "Scandal" to start.  

I know why I am going to TEDMED and "Great Challenges Day" but it will be fun to explore my favorite scandalous locations while I'm enjoying our Capitol City.  I can't wait to toast to TEDMED and "Great Challenges" once I'm in the beltway.  But tonight, instead of writing this post, I was caught up on my Twitter timeline, while creating the vision for the "Men of Scandal" calendar... that's when I realized I would want and covet more than one calendar.  The Men of Scandal calendar would be where I kept my workout and fitness schedule.  The Scandal Datebook with tips by @scandalmakeup would become my new desk calendar (apologies to Moleskine!) and the Lady Fixers "Girl Gladiators" calendar would be where I note and schedule all of my social media chat and health care advocacy activities.  I know Shonda Rhimes may be too busy writing and producing my obsession to design the calendars I desire... but ABC Marketing should get on this.

(Late night Day 11 post for HAWMC!)

Friday
Apr052013

"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.