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Friday, January 23, 2015

More Patient Travel Scholarships!

What does the “Cinderblocks2: The Partnership with PatientsContinues” conference (in Grantsville, MD pop. 825) and Doctors 2.0 & You conference (in Paris, France pop. 2 million) have in common?

Both events are focused on innovation and better communication within healthcare. 

Doctors 2.0 has the over arching goal of identifying the ways in which the inclusion of health 2.0 tools and social media platforms can improve care.

Cinderblocks2 is a mash up of art, activism, medicine, social media, HIT, patient rights and fire-dancing.  It is sort of like if Burning Man met healthcare.

Both events were founded and are organized by two powerful women:

As for Cinderblocks, I am Regina Holliday.  Sometimes called the Rosa Parks of Healthcare.  I graduated Sapulpa high school in Oklahoma. (GO Chieftains!) I worked retail for 16 years before my loving husband Fred died of cancer in 2009; then I became a patient rights activist and artist. I am a keynote speaker, a health information technology change agent and am currently creating The Walking Gallery Center for Arts and Healing in Grantsville, MD.   

Both events are on the same days!!!

Doctors 2.0 is on June 4-5, 2015.  Cinderblocks2 is on June 4-6,2015.  Now some conference planners would be shooting eye daggers at each other over that, not Denise and I.  We are all about spreading the love.

The most important thing both events have in common is that they will benefit from Patient Travel Scholarships issued by the Society for Participatory Medicine!

In 2012, The Society for Participatory Medicine created a patient travel fund so they could award ten $500.00 patient travel scholarships. These were issued to patients so they could afford to attend Cinderblocks1 in Kansas City.  We crowdfunded the money and we asked for direct donation to the site.  We were successful thanks to many kind donors.

When Denise pointed out that our events were on the same days she said it would be great if we could connect them in some way, so we decided we are going do some live streamed interviews between the two conferences. But why stop there?  I said that the Society for Participatory Medicine (#S4PM ) was going to provide patient travel scholarships once again for Cinderblocks, would she like to include Doctors 2.0 in the competition?  She said yes!  #S4PM said yes, they could issue awards for either event!!!

SO…. One day after I announce that HIStalk is epically cool and issuing travel scholarships for HIMSS,

I am announcing that the Society for Participatory Medicine will issue $500.00 Patient Travel Scholarships to attendees of Doctors 2.0 or #Cinderblocks2.

How do you enter?

You must post a blog entry by March 15, 2015 explaining why you want to go to either Doctors 2.0 or Cinderblocks2 and why a patient travel scholarship is needed. 

You must send a link to the post to me by either twitter or facebook prior to March 15, 2015.  If you do not have a blog, please send me your post as an attachment and I will find a blog you can post on as a guest blogger.  

You must also encourage people to donate to the travel fund. These scholarships will come from donations to the fund. I will do my best to encourage companies to sponsor folks but I have found when it comes to patients many small donations add up. (Below is just a screen shot you must go here to donate.) 

How will you be judged?

We will judge entries based on writing ability and need.  We will announce the winners on March 31, 2015.  Payments will be issued after the conference events.

Responsibilities of the winners: 

You will need to attend the conference of your choice.  We encourage you to use social media during the conference.  We will need you to post a report of your experience on a blog.  After these responsibilities are fulfilled, the Society for Participatory Medicine will issue the $500.00 scholarships.

It is sure a great time to be a patient activist! Spread the word and good luck!

Thursday, January 22, 2015

HIMSS or Bust

Last year I had the opportunity to do an amazing interview with Tim from HIStalk.  It was a wide-ranging discussion that covered a great deal of the HIT (health information technology) landscape.   Toward the end of our conversation, Tim and I began to talk about the challenges patients face attending HIMSS.  Many patients would like to go this enormous conference with its thousands of attendees, great educational sessions and access to numerous health care venders; but cannot afford to pay for hotel lodging, airfare and an attendee pass.  We talked about the possibility of working together to create patient travel scholarships.

So today we would like to jointly announce the HIS-talking Gallery Patient Scholarship for travel to HIMSS 2015, April 12-16, in Chicago!

There will be five scholarships offered for $1,000.00 each provided by HIStalk.  Each winning attendee will also have  a HIMSS attendee badge.  The winners will write a post about why they want to attend HIMSS prior to the event. That post will be hosted on HIStalk.  They will be encouraged to use social media to report out during the event. They will also write a HIStalk post explaining their experience after the event. As the founder of The Walking Gallery, I will offer to paint a jacket for any patient winners who have not already joined The Walking Gallery. The HIS-talking Gallery patient scholarship winners will be walking talking patient thought ambassadors in the hallowed halls of HIT.  Also they will be able to sit in the comfortable space of the HIStalk booth on the exhibition floor whenever they want to rest and recuperate.

In addition, they will also get an official T-shirt!

 How do you enter?

If you would like to be considered for one of these scholarships, please email your request to (one of our newest members of the Walking Gallery): Lorre Wisham at  Your email needs to explain why you should be funded to attend HIMSS and please include your facebook link or Twitter handle. (International patients are welcome to apply but they must be fluent in English and the scholarship amount is a flat $1000.00 regardless of travel distance.)

How is it judged?

The HIStalk team will judge requests based on writing merit and I will be looking at the patient story aspects.

When is it due?

All requests to attend must be turned in to Lorre by Feb 9, 2015.  We will announce the winners within one week on  Checks will be issued before the event so winners can book their airfare with these funds.

 Why are we doing this?

I see this scholarship as a wonderful next step in greater inclusion of patients within the HIMSS conference.  I thank Tim and the entire team at HIStalk for their willingness to support patient participation in such a meaningful way.

Now, start writing those emails!

Sunday, January 11, 2015


What shall I explain about this painting? Shall I tell you that Mélanie Péron lives in France?  Should I say that she met Nicolas in 1997 when she was only 19 and he was only 21?  Shall I tell you it was a perfect love that was full of happiness?  Their love completed her.  His loving glance filled her with exquisite flutters, like butterflies. 

After 10 years of happiness, something was wrong with Nicolas.  In 2007, he was diagnosed with acute myeloid leukemia type 6.  He must be cared for 125 miles from home in a sterile unit.  He had aggressive chemotherapy.  The search began for a bone marrow donor.  In 2010, they found a donor. Mélanie would watch Nicholas within his  sterile room.  She would don her protective gear and walk in like an astronaut; her heart beating like the wings of a butterfly.

After four weeks of isolated treatment, he was allowed to go home and recover.  His already thin frame was now gaunt.  He turned to Mélanie and said,” I look like death.”  Then sobs racked his body, as he cried as guileless as a child. Little by little he grew better.  In August of 2008, they went on holiday in the countryside.  In December 2008, Nicolas felt tired and out of breath.  He went to the doctor and was told he was just anxious.  He was prescribed sleeping pills, massage and exercise.

By New Year’s Day he was very short of breath, so they went to another doctor. Nicolas had a double lung embolism. They went to the hospital and soon Nicholas had a fever.  Mélanie met an awful nurse who visage is seared with in her mind.  The nurse did not want to disturb the doctor on duty.  Nicolas was in so much pain but struggled to get treatment because of all the drug interactions.  He contracted a fungus while hospitalized.  Then Nicolas told Mélanie he had planned to ask her to be his wife.

Nicholas was hospitalized from January until March. Mélanie wanted to do something nice for Nicolas so she contacted a French singer named Bénabar and asked if he could play for Nicolas.  The singer came to the hospital room surprising Nicolas.  This created a butterfly effect in the entire care team.  They saw the power of art in a clinical environment.

A few days later Nicolas caught a cold.  He had such trouble breathing.  They were so alone.  As anyone who has along term illness can tell you, as weeks become months friends fly away.  They live in their fast-paced normal lives, while in the land of the sick the moments are counted on a clock without hands.

The doctors tried a heroic measure of high doses of cortisone in a short amount of time. Mélanie did not leave Nicholas’ side as fought hallucinations.  She stayed night and day. He was as terrified as a small child and oh, so very sick.

On April 12, 2009 Nicolas died. Mélanie was shattered.  She never had the chance to be a wife, so she was not a widow.  She had no role in ceremonies of death, set aside; she would find a way to conquer grief.

She would embrace the butterfly effect.  She would help others who suffered.  She would write, she would promote the arts and she would create l’Effet Papillon.  In September 2011, she launched this social enterprise hosting writing workshops for 80 oncology patients. This project continues to grow. Mélanie continues to make new connections.

She found me.  She found another who lost their love to a dreaded disease in 2009.   She found someone who could paint her metamorphosis, someone who knew the beautiful pain.  We feel the wings of change as the flutter by.  We know the power of the last exhale.  We know breath can change the tide of years, we know the power of butterflies.

Wednesday, December 31, 2014

Can you tuck me in?

My boys are growing older.  My eldest is 16 and stands 6 feet tall.  He could easily pass for a grown man. My youngest is almost nine and each day I see glimmers of the man he will become. 

At night they ask for the same question, “Will you tuck me in?”  The nighttime rituals begin. I read them stories. I join them in their prayers. Before the light is extinguished, I unfurl blanket after blanket, tucking the edges close.  This is a moment to be cherished.  This is release of the day and the embrace of restful sleep.  This is a sacred moment and it relies on trust.

When you are an adult, you greet the night alone.  No loving parent tucks you in and wards you against the dark and all its terrors.  I can think of only a few times in an adult life you will feel billow of a blanket that descends upon you.

In a hospital, they tuck you in.  For a moment, you can feel as safe as a child.

Until they question your pain…
Are you drug seeking?

Until they insult your research…
Don’t tell me about what you found on Google.

Until they belittle your experience…
We do not have access to your entire medical record.

The hand that rocks the cradle rules the world.   The hands that tuck you in can make the difference in a life and in a death.   In 2015 lets work together, patient and provider, to restore a trust in each other and unite against the darkness.

Friday, December 19, 2014

The Grantsville Art Walk was a Success!

On December 11, 2014 the Grantsville Art Walk had a reception and silent auction at Penn Alps.  It was a lovely evening and the room was filled with friendship, culture and the giving feeling that abounds this time of year.

We set the minimum bid at 25.00 per piece. Many pieces sold well over their minimum bid and every single piece of art sold!  We raised over $800.00 for a selection of charitable causes.

We would like to thank all of the businesses that supported us during the month of the Art Walk by showing the work of the artists in their establishments.  Thank you Green Valley Foods, Blue Moon Antiques, 1st United Bank, Ruth Enlow Library, The Highland Thrift Shop, Medical Rehabilitation Systems, Somerset Trust, The Republican Newspaper, Buckel’s Laundromat, The Medicine Shoppe, Four Season’s Stitchery, Dr. Robin Bissell, Grant’s Mercantile and Kid’s Corner.  We especially want to thank the staff of Penn Alps for not only showing art for a month but for hosting a lovely reception.

The Children of Grantsville Elementary did their very best. Their work raised hundreds of dollars to support arts funding for their school.  Congratulations artists and teachers of Grantsville Elementary!

Mrs. Evan’s preschool class with a piece entitled “Fish”
Mrs. Bittinger’s Class with a piece entitled “Kites Fly High."

Mrs. Pfaff’s 1st grade project “Flower Vase.”

                              “The Casselman Bridge” created by Mrs. Rhoten’s 2nd grade class.

                               Mrs. Frantz's 3rd grade project “A Field of Flowers.”

McKenzie’s 3rd grade class and their painting of “Grantsville.”

Mrs. Wampler 4th grade class project “The Four Seasons.”
                                     “Birches and Butterflies” from Mrs. Paul’s 4th grade class.

“Paper Quilt” by Mrs. Upole’s 5th grade class. 

                                     “Birds on a Highline” from Mrs. Stark’s 5th grade class.

Thank you to all the artists who were willing to take part in this inaugural event!  I hope you return next year and it has been such an honor to get to know you better.  Thank you Phil Sorenson, Connie Stark, Carolyn Collen DuBose, Connie Garlitz, Joan Holliday, Marsha Warnick, Butch Buckel, Lisa Rounds and Jenny Beachy for participating as artists. 

(Pictured Connie Garlitz with her photography.)

(Pictured Lisa Rounds with her Jewelry)
(Pictured Marcia Warnick with her photography)

Thank you to my able assistant Susan Thatcher.  I am so glad you are part our lives!

Thank you everyone who came to the event. By purchasing art you donated funds to The Grantsville Parent Teacher Organization, Garrett County Mentors, Samantha Funds the Arts, The Rotary Christmas Tree Fund, Hart for Animals of Garret County, Juvenile Diabetes Foundation, and the Ruth Enlow Library.

Since the auction last week people have been glowing in their praise of the art and the event itself.  We cannot wait to do it again next year!

Tuesday, December 9, 2014

The Business of Art

People often tell me that for an artist, I have a good understanding of business.  I would hope so!  I started working at the flea market in Sapulpa, Oklahoma at the age of seven.  I was paid two dollars a week under the table for my labors. I got first real job at the age of 15 as a teacher’s aid and part time art teacher at a summer school program.  The Private Industry Training Council of Sapulpa teamed local businesses with disadvantaged youths and helped pay part of our salaries.  So I owe my first job, and it was a job in the arts, to the willingness of businesses to work together to help the children of a small town get a chance to shine.

I am very happy to say that I have been able to pay that gift forward.

I now live in Grantsville, Maryland and I asked several businesses in Grantsville if they would be willing to take part in an inaugural Art Walk.  Fifteen businesses said, “Yes!” They are hosting guest adult artists and the work of local students.  The art was on display during business hours from November 13- December 11. At the close of the Grantsville Art Walk, an art reception and silent auction will be held 5-7pm on December 11 at Penn Alps Restaurant in Grantsville.  It will be open to the public. The funds raised by silent auction will go to the various charities chosen by the artists.

Green Valley Foods hosted Watercolorist Connie Stark. The funds raised from the auction of Connie’s piece “Amish Farm” will go to Hart for Animals of Garrett County.

BlueMoon Antiques hosted two jewelry artists: Jenny Knauff who is donating the proceeds from auctioning her jewelry to the Juvenile Diabetes Foundation and Lisa Rounds who is donating her proceeds to The Ruth Enlow Library. (Pictured with art Margaret from Blue Moon Antiques)

Photographer Marcia Warnick’s work was displayed at 1st United Bank. “The White Dogwoods” proceeds are being donated to Samantha Funding the Arts. (pictured with art Blake from 1st United Bank)

The woodworking of Butch Buckel was displayed at the Ruth Enlow Library. Butch is donating the proceeds from his creation to the Grantsville Elementary PTO (Parent Teacher Organization).

TheHighland Thrift Shop hosted Photographer Phil Sorensen. 

Phil is donating two pieces to auction: “Garret County Barn” and “Sunburst” all proceeds will go to Garrett County Mentors.

MedicalRehabilitation Systems hosted the painted textile work of Regina Holliday and Joan Holliday.  As the work we are showing represents the advocacy movement known as The Walking Gallery, we are donating a materials basket with information about the movement. The proceeds from this basket will go to the Grantsville Elementary PTO.

Somerset Trust displayed the paintings of Carolyn Collen DuBose. She is donating “The Barn in Sheperdstown.” Carolyn was the art teacher at Grantsville Elementary and taught elelmentary art of 31 years. Her proceeds will also go to the Granstville Elementary PTO.

The work of Photographer Connie Garlitz was displayed at The Republican Newspaper office. “Flower with Hummingbirds” is the piece Connie is donating to support the Rotary Christmas Tree Fund.

The students of Grantsville Elementary are participating by displaying class creations in local businesses.  All proceeds of the children’s work will go to the Grantsville Elementary PTO to support continued education in the arts. 

The student work from Mrs. Wampler class “The Four Seasons” was displayed at Buckel’s Laundromat.

TheMedicine Shoppe displayed “Birches and Butterflies” from Mrs. Paul’s 4th grade class.

Four Season’s Stichery displayed “Paper Quilt” by Mrs. Upole’s 5th grade class.  

Dr.Robin Bissell’s office displayed “Birds on a High-line” from Mrs. Stark’s 5th grade class.

Grant’s Mercantile displayed Mrs. Pfaff’s 1st grade project “Flower Vase” and Mrs. Frantz’s 3rd grade project “A Field of Flowers.”

Penn Alps displayed the painting “The Casselman Bridge” created by Mrs. Rhoten’s 2nd grade class.

Kid’sCorner displayed the work of Mrs. Evan’s preschool class with a pice entitled “Fish” and the work of Mrs. Bittinger’s Class.  Their piece is entitled “Kites Fly High.”

The Republican Newspaper’s Grantsville office also hosted the work of Mrs. McKenzie’s 3rd grade class and their painting of “Grantsville.” 

Monday, December 8, 2014

Rolling the Dice

I paint the patient story.  Many people know that.  Others who closely follow my work know that my focus in advocacy is patient data access and the patient/caregiver role in the implementation and use of HIT (Health Information Technology).

Last March, I was honored to do and interview with the elusive Tim from HIStalk about the current landscape in HIT. Tim is known only through his avatar and his writing. I met Lorre Wisham during the process of conducting the interview.  She is the public face of HIStalk. She attends conferences and oversees the day-to-day operations of HIStalk as the Chief Operating Officer.  She also has an avatar and that avatar is lovely.  The image is based upon her real face.  She almost seems like a Disney princess, the image in the looking glass, the fairest of the land. 

Lorre asked if she could join us in The Walking Gallery.  I read her story of pain and cried.  This is her jacket painting “Rolling the Dice.”  Here we see the other side: the mirror’s flipped reflection. Here the princess cries for all that are lost.

Lorre’s oldest daughter Danielle was a type 1 diabetic.  She was diagnosed at the age of 12.  She was a frequent visitor to emergency rooms and pediatric ICU for years. The smallest infection, like an ingrown toenail could upset her blood sugar.  The doctors and nurses seemed to be rolling the dice when it came to treatment options. Many times Lorre’s daughter was in the hospital, finally stable, and they would bring her lunch.  Lorre would tell the nurse that her daughter needed insulin if she was going to eat.  The nurse would look at Lorre with a withering glare and the nurse would say that she knew better. Unfortunately, she did not. Lorre’s daughter would say, “Mom, I think my blood sugar is high.” She was right.  Lorre had to covertly bring insulin with her to the hospital and administer it against medical advice.

Once Danielle’s blood sugar was frighteningly off. Lorre took her to the emergency department at the local hospital.  They stabilized her overnight. Lorre sat with her daughter and held her hand.  The next morning the hospital decided to transfer her to the Pediatric ICU at a nearby facility.  They removed her IV. Lorre and Danielle waited an hour for the ambulance to arrive.  Lorre asked about insulin but was told they could not administer insulin in an ambulance without a nurse present. Lorre’s prior experience with insulin was intrabolus and it lasted for hours, so she thought everything would be fine.  What Lorre didn’t realize was that when insulin is administered in an IV the effect is immediate, but ends immediately when the IV is removed.  

By the time they arrived at the second hospital and were able to admit her to the ICU, Danielle’s blood sugar was off of the charts again and she was in kytoacidosis.  They started the IV and added insulin.  She didn’t respond.  They ordered new insulin from the pharmacy.  By this time she lost consciousness, her blood gasses were off, and her brain started to swell.  There were three physicians there, including an endochroinologist.  They said they had done everything they could and she wasn’t responding.  They didn’t think she was going to make it.  She did survive that event and became conscious 12 hours later.

Lorre and Danielle were able to spend many lovely years together. If you look at Lorre’s facebook page you will see Lorre with her two daughters at Christmas time.  Sadly, Danielle died almost ten years ago in a car accident.  It was never determined if her blood sugar levels were a contributing factor.  

Lorre’s grandmother was hospitalized three years ago. When Lorre arrived at the facility her grandmother was in tears.  Lorre’s diabetic grandmother had been taking hydrocodone for pain every 4 hours at home.  She also took 16 other medications and carried a complete list in her purse.  She had arrived in the emergency department nine hours prior and still had not been given any insulin or pain medication.  Lorre and her husband both worked in Healthcare IT. They immediately went to the charge nurse and didn’t leave her side until Lorre’s grandmother received her medication.  When they talked with the nurse afterward, she admitted the emergency system and the hospital EMR (Electronic Medical Record) system weren’t integrated or interfaced.  The nurses on the floor had no way of knowing what occurred in the emergency department until the notes were entered much later.

Two years ago Lorre’s youngest daughter Brianne was in a skiing accident and ended up in the hospital in La Jolla, CA. She was diagnosed with pneumonia one month later.  Her lung was 70% filled with fluid and she wasn’t responding to the treatment.  Lorre kept telling the pulmonologist about the accident and he dismissed it.  Finally, Lorre asked Brianne to show the doctor a picture of herself purple from her neck to her buttocks and with a fractured collarbone. The doctor said, “Oh My God, there must be tissue damage.” Due to this patient reported data and accompanying image, the treatment plan changed.  Brianne was in inpatient care for 16 days and recovered.

While Brianne was in the hospital in La Jolla, Lorre’s husband learned he needed a liver biopsy in Tucson.  Lorre returned home. Her husband’s biopsy revealed liver disease.  They gave him a 50% chance of surviving for 30 days. Lorre thought of all of the reasons they could beat the odds.  They had good insurance, the ability to pay for additional attention, willingness to do whatever it takes and he was relatively young.  Lorre’s husband was admitted into the hospital on July 2, 2012.  She was very shocked by how present she needed to be just to keep everyone involved in treatment on the same page.  There were teams of physicians, new nurses every couple of days, and a rotating group of aides.  The staff was consistently forgetting his medication or mixing it up.  Lorre had to be ever vigilant about what her husband needed, but also what they were doing or failing to do. 

The physicians ordered so many tests. Lorre believed that if they did everything they were told to do, they would get through it.  Her husband contracted C-diff and hospital acquired pneumonia.  He started to suffer from anxiety and became terrified at night.  Lorre slept at the hospital and only left to shower and change clothes.  They were in the hospital for 16 days straight, when a brave nurse took Lorre aside and told her she was fighting a lost battle.  The nurse told Lorre one more hospital-acquired disease would be more than her husband could stand. He was dying. Lorre took him home and he died two days later.

On July 3, 2013 Lorre’s father was diagnosed with stage 4-pancreatic cancer.  He also lived in Tucson. Lorre took responsibility for him.  Each time he was hospitalized (always at the same hospital using and electronic medical record system), Lorre had to go through the medication list several times until they could agree that it was correct. Regardless, many, many times Lorre received a call at 6am from the hospital pharmacy asking her to clarify the orders or provide them in their entirety.  It was maddening to think that all of his information was in the system and literally a week after the prior visit they had to start from the beginning again.  Lorre’s father died in November 2013.

That is Lorre’s story of pain. I placed dice throughout this piece. A single die is placed next to everyone Lorre lost.  Each die is either pressing Lorre down or separating her from the one she loves.

I am sure that everyone who reads this can empathize with Lorre’s pain, but for those of us who work in technology and love the science behind evidence based medicine; the frustration in this tale is acute.  Though life itself can be a gamble, the protocol in medical care should never be a roll of the dice.