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Entries in Regina Holliday (3)

Thursday
Apr042013

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.    http://lupusresearch.org/

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” https://www.facebook.com/LupusAwarenessIsFun?fref=ts or “Friends Against Lupus” https://www.facebook.com/AgainstLupus?fref=ts 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  https://www.facebook.com/groups/295223483902051/?fref=ts

“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.”

Monday
Nov192012

Regina Holliday's "The Walking Gallery" and "Little Mirrors of Light"

Have you ever been moved by art? Have you ever seen art move?  Have you ever been a part of the movement?  I have.  Thanks to Regina Holliday, I am now a part of "The Walking Gallery" ~ I got my jacket today.  Perfectly timed for Day 19 of WEGO Health's 2012 National Health Blog Post Month... today's prompt "questions I have for other patients"

Would you send a blazer to an artist so she could paint your health story on the back?  I did just that. Thanks to Tiffany Peterson @TiffanyAndLupus for linking me to Regina, "The Walking Gallery" and the "Partnership with Patients" which led me to participate in the "Cinderblocks" conference in Kansas City earlier this Fall.  My jacket is # 206 also known as "Little Mirrors of Light" I can not describe how it feels to see the art that Regina created and I inspired.  My attempts to describe the feeling of seeing my blazer for the first time are not working.  I was touched, moved and stirred by the beauty.  My jacket wasn't ready so I wore a borrowed jacket from Regina during "The Walking Gallery" gathering in Kansas City.

Here is the link to the post where Regina Holliday @ReginaHolliday on Twitter explains the creative inspiration for "The Walking Gallery" http://reginaholliday.blogspot.com/2011/04/walking-gallery.html Here is Dr. Ann Becker Schutte 's post about "Why she walks" http://www.drannbeckerschutte.com/2012/09/the-walking-gallery-of-healthcare-why-i-walk/

There are many questions, I would like to ask of other patients but the one I am inclined to ask tonight as I write this post is... would you like to join me in "The Walking Gallery"?  It is as easy as shopping your closet and sending a blazer to DC and having Regina (and the patience as a patient) paint your story on the back of your jacket.  I look forward to wearing my blazer to conferences where I won't have to say a word because my jacket does the talking and the walking.

Monday
Oct012012

Nothing is impossible.

The power of social media can be used for good and Regina Holliday @ReginaHolliday creator of The Walking Gallery decided about 4 months ago that she was going to create a Partnership With Patients Summit to be held in Kansas City, Missouri.  When I first heard about the Health Care Social Media "power-houses" attending I was interested by there was no way that I could afford to travel to the conference at this time.  I am still paying off the credit card from my trips to NYC for Lupus Advocacy.  That's when Tiffany @TiffanyAndLupus Peterson told me to apply for a scholarship... and I did.  Regina Holliday Patient Travel Scholarship call to action.. http://reginaholliday.blogspot.com/2012/08/calling-all-patient-advocates.html

Nothing is impossible. (Believe this and it will change your life.)  I waited until almost the last day to apply, I wrote about why I wanted to go in the post "Take Me to the Summit"  http://lalupuslady.squarespace.com/home/2012/8/30/partnership-with-patients-take-me-to-the-summit.html I got a scholarship and this is the post about what happened in Kansas City... because sharing is caring.

Regina worked hard and perfected the conference schedule to make every minute count.  From the Friday night gathering of The Walking Gallery where most everyone wore their patient /advocate story on their hand painted jackets.  Regina is an artist and has transformed the patient voice by making it a work of art.  It would be impossible to articulate Regina's story here, so I am including a lot of links to connect you directly to her.

http://reginaholliday.blogspot.com/2012/09/partnership-with-patients.html

                       

This is Regina's own "Walking Gallery" jacket.

This is Tiffany's "Walking Gallery" jacket painted by Regina.

This is a Lego of the East Coast members of #TheWalkingGallery community.

Regina hasn't finished  my jacket yet, so I proudly wore this one.  Regina is incredibly talented.

The next day was the Partnership with Patients Summit known by the hashtag #cinderblocks I felt lucky to be there so I wanted to show how much I love the Summit with a kiss of the "cinderblock"  

The agenda was jam packed with informative and dynamic speakers.  The opening remarks from Regina started the day with passion.  Then Dave @ePatientDave deBronkart of the Society for Participatory Medicine spoke with Michael Millenson.  Next were the 4x4 presentations from conference sponsors, I really liked @IntouchSol 's presentation and @BunnyEllerin are connecting physicians and Health Care Providers communicate with one another.  Then @Pocket_Health and @Cerner presented.

I attended the morning sessions with Pat @PMastors Mastors on the Partnership with/for Patients and the Patient Speakers and SpeakerLink Panel with @ePatientDave, Kait @Kaitbr B Roe where the inspiration flowed like the Missouri River --where the Riverfront Conference is located along.

After a quick lunch it was time to head over to the @Cerner Experience Theater where we learned what it was like to be a patient "Cerner Style" a network that connects the health care providers using a technology network and improving the current health care system.

After the Cerner Experience, I found a quiet corner of the lounge and took a #LupusStyle nap to reboot before the afternoon sessions.  Then came the session I was really looking forward to Lisa Field's aka @PracticalWisdom "Power Points that Snap, Crackle and Pop!" Of course, I had already submitted my slides for my Ignite! speech later that night but I learned what to do and not, in future presentations.  I didn't know what an Ignite! speech was two weeks ago -- but when Regina put out the call to submit ideas for an Ignite! speech I did.  And since "Nothing is Impossible" I was selected to be an Ignite! speaker.  I spoke about my journey "From Flare to Flair" how I discovered my patient voice and found my "Lupus Style"

Sunday was #HCKC Health Camp Kansas City... I was a very "happy camper" especially after reading the rules, who wouldn't be? 

The Health Camp sessions were not determined until that morning, they were an extension of the information and passion that we learned the day before.  I loved the flexibilty and "crowd-sourcing" format of the panels and how people worked together to workshop ideas.

While we were workshopping at the Riverfront Cerner Conference Center we watched for and saw @DaveCorn who is swimming 1,000 miles to raise cancer awareness.  Follow his team @Swim1000 to learn more.  He got off the river where he enjoyed a bite to eat and cleaned up a bit and then took the stage and share his story of Cancer Awareness and his 25 journeys of 1,000 miles each.

If it were not for the generosity of @TrishaTorrey I would not have been in Kansas City for #TheWalkingGallery #Cinderblocks and #HCKC I will be forever grateful to Trisha for making me believe that "Nothing is Impossible."

Hugs and Smiles,

Amanda