Entries in WEGO Health (46)


HIStalking Patient Advocate "LA Lupus Lady" goes to #HIMSS15 in Chicago.

When I first heard about the opportunity to attend the 2015 HIMSS conference in Chicago a HIStalkking Patient Advocate on Regina Holliday's blog, I knew I had to appy even if I didn't earn one of the coveted "Patient Advocate" scholarships.  I wanted to be a part of the incredible opportunity that invited patients to be a part of the largest Health IT conference of the year.  I was thrilled when I found out that I was going to be one of five Patient Advocates selected by Regina Holliday and the HIS talk team.

"LA Lupus Lady" in The Windy City of Chicago at HIMSS15.

After weeks of planning and preparations, taking a trip when you managge a chronic illness is more than packing your suitcase, it involves strategy and planning for all contingencies.  Traveling to Chicago, checking in to the hotel and adjusting to Chicago time, for most people that is the extent of travel stress. For me, the seemingly endess walk to the departure gate and retrieving my luggage was a virtual marathon.  Yet my adrenalin and excitement pushed me with a sense of excitement, I made it to the shuttle and arrived McCormick Place with eagerness and anticipation.

There was a small "registration situation" but soon I found myself meeting Colin Hung (@Colin_Hung of #hcldr) for the first time.  I love meeting my friends from Social Media in real life and had been looking forward to hugging Colin at HIMSS.  Thankfully Colin had access to an extra HIMSS pass and shared his access with me.      

imagine walking the streets of a major US city where there were banners welcoming HIMSS 2015 conference attendees.  This is how Chicago, welcomed me and the othre 40,000 attendees.  

strolling the streeets of Chicago was one thing but walking the aisles of booths within the exhibit hall of HIMSS was incredibly empowering.  I was filled with joy and inspiration with every step.  The colorful signage and well-appointed booths were on abundant display as Colin helped me wield the magnificent madness and lead the way to the HIStalk booth to check-in with Regina and the HiStalk team.

Regina Holliday & Colin Hung show off their "The Walking Gallery" jackets in the HIStalk booth at HIMSS15.

Soon, I was on my own aand wandered through the exhibition hall, meeting executives and representatives for the largest Health IT companies as well as the next big thing and meeting the teams behind the start-ups who strive to create the next big paradigm shift in Information Technology.  After a fabulous first day of HIMSS adventures, it was time to celebrate at the HIStalkapalooza party held at Chicago's famous "House of Blues" where I was proud to participate in judging the HIStalk "best dressed" and "best shoes" contest.  In case, you don't know this about me, let me share that I love it when my "passions collide" and being a Patient Advocate with a new Karen Kane dress on at the HiStalk HIMSS party was a real collision of my passions for Health Actiism, fun and fashion.

HIStalkapalooza 2015 Selfie taken upon arrival at the Chicago "House of Blues" 

The reason why attending HIMSS was such a pleasure for me is that HIMSS is a "global, cause-based, not-for-profit organization focused on better health through Information Technology."  As a Healthcare Activist, I was happy to be healty enough to attend the conference and absolutely thrilled to be able to engage and connect with the stakeholders involved with developing the next generation of healthcare devices, apps and more importantly I was able to be seen and heard as a Patient Advocate.

Patient Advocate "engaged" with Jan & Jack at HIMSS!

On Tuesday morning, Jan Oldenburg. of the HIMSS Connected Patient Initiative shared the value and impact of engaging with patients at the Digital Health Meetup.  This meetup was one of the most empowering sessions of HIMSS15.  I was already teary from Jan's passion for the community and retelling of Regina Holliday's story "73 cents" when she asked if anyone was a member of "The Walking Gallery" and wearing their jacket.  Of course, I was.  I stood up and "modeled' my jacket.  Soon, after Jan mentioned tthat WEGO Health CEO Jack (@healthyjack) Barrette was in the crowd.  I was overwhelmed by inspiration and had to talk with Jan about how I could continue my passion for the Connected Patient Initiative and community after the conference was over.

"Connected Patient" Learning Gallery exhibit at HIMSS.

Imagine the future of healthcare where patients and doctors are able to share EMRs/EHRs with immediate access and are able to create a system of Meaningful Use.  (No Meaningful Use "MU" without me.)  At the HIMSS conference, the future is not some far off and distant place but "the future is now."

In addition, to attending HIMSS as a Patient Advocate, I was interviewed for #TalkHITwithCTG.  Thank you to CTG Health Solutions for being a sponsor of the HIStalking Patient Advocates HIMSS registration passes. CTG Health Solutions was generous and extended their extra passes to HIMSS to HIStalk and that is how the HIStalk Patient Advocates were able to gain admission to HIMSS. (Thank You!)  

Headlining the HIMSS conference was former POTUS George W. Bush.  He was surprisingly jovial and recalled his memories of days during his Presidential adminisration.  I enjoyed his family stories of how his parents and family have taught him the value of family, trust and love.  Though attendees were told not to take pictures during his keynote presentation, as a Patient Advocate I was also told to be gently and openly "disruptive" so I enjoyed the challenge of sneaking pcitures of 43 during the Q and A.

Former President George W. Bush giving the keynote at HIMSS15! Wowing the crowd.

Immediately after the Presidential Keynote, it was time for the HIMSS Block Party a celebration of the community and regional HIMSS chapters representatives were there to encourage a real sense of community.  It was at the HIMSS Block Party where Regina and the HIMSS attendees who are members of 'The Walking Gallery" gathered for a photo op and hugs.  On my way, out of the party I luckily met the California HIMSS chapter representatives and as luck would have it.  I won the Block Party prize of California wine and treats.  The HIMSS community made me smile even more (on the last day after the conference) than I thought possible.

The next day, I spent more than a few hours napping and recouping from the conference but I "forced myself: to get out and explore the city.  In addition, to visiting the famous Bean sculpture I went to Tribune Plaza for a special "photo op" with my favorite football team's helmet, despite being in Chicago I had to pose with the New York Jets helmet, a part of the city's preparation for the NFL Draft. 

Passions collide in Chicago... #LHandSign in the New York Jets helmet in front of the Chicago Tribune. Raising Lupus Awareness in the city after HIMSS15 wrapped.

It was an honor and pleasure to join the HIMSS community.  I feel so lucky to have had the opportunity to participate as a HIStalk Patient Advocate.  I will never be able to show my deep gratitude and appreciation to everyone who made my journey to Chicago such a wonderful adventure.  Lorre, Jennifer and of course the entire HIS talk team, I am so grateful.  How can I begin to thank Regina Holliday for creating the environment where patients are included?  I am proud to share my adventures in Chicago and hope that this post was able to give you a glimpse into my HIMSS journey.  Patient advocacy is my path and I feel that my trip to Chicago was a delightful turning point in empowering me to "level up' my activism and share my enthusiasm for advocacy.  In case, you're wondering... Yes, I am still smiling.


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."



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 is…







Lupus made me realize… I am








"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.


Purple Flowers Blooming!

Wordless Wednesday ~ post a picture that symbolizes your condition and experiences.

These purple flowers have found a way to bloom despite the weeds, bugs and parasites that surround them.  These purple flowers are blossoming with beauty and reflecting that nature finds a way to succeed when it has determination and purpose.  My "Lupus Style" is like these flowers, it took a while to grow through the challenges but here I am now.  Day 3 of 2013's HAWMC!  Of course, I broke the rules and added words to "Wordless Wednesday"