#MedX

Trauma-Informed Advocacy

Healthcare talks (not enough) about trauma-informed medical care, which is summarized best by what its name so states. But what about trauma-informed advocacy?

This could easily become a dissertation or a thesis topic, and, fair warning, I may pick your brains in the future if/when I pursue another grad degree. In the meantime, if you want to read a dissertation, or even a SparkNotes version, on trauma research, you have to put in the hours. For those interested in learning more, some recommended starting points would be to look at how trauma is clinically-defined, to read the DSM V PTSD diagnostic criteria as examples, and so forth.

Just as physical health can impact mental health and vice versa, so, too, can trauma. For example, we know trauma changes us on a cellular level, is linked to autoimmune disease, and can negatively influence mental health. This can, in turn, greatly diminish an individual’s quality of life, while also hurting society (lost work production, etc.). For years I have been preaching that trauma is a public health crisis that costs us so much- financially, emotionally, physically- and this article wowed me in how well it articulates those points. While not all trauma is preventable, much of it could be prevented/lessened if human beings simply treated one another better, and if healthcare provided more opportunities to cope well.

But, for today, this blog post is fodder to perhaps get us thinking about our advocacy.

Not every person, nor every advocate, has experienced trauma. Yet, when I have looked around the room at healthcare events in the past, I have seen the battle scars of those who may have publicly or privately disclosed their painful histories with us. Admirably, advocates have chosen to help others, to be intellectually curious, despite their own hardships.

Havoc-wreaking health conditions. Bloody medical procedures. Abuse and/or neglect. Poverty. War. And, sadly, the list could go on much longer.

We may have been brought together, on Twitter or at a conference, for example, because of our mutual interests in healthcare-related topics. And yet, I often find there is another common denominator in the room: trauma.

Diabetes fireside chats often ask: Which came first, the diabetes or the depression? (Or perhaps, a little of both?). Knowing what we do about the health effects of trauma, this theme remains prevalent. Trauma often begets trauma. Maybe workplace harassment trauma triggers an autoimmune attack, and then the difficult reality of living with a chronic physical health condition compounds, molding trauma upon more trauma into a teetering Lego castle of human life.

I recently tweeted that in educated adulthood, I often find myself wondering about the manageability of my own diabetes if the inflammatory effects of trauma history were not involved (i.e., would type 1 diabetes, an autoimmune condition, be more tamable without trauma?). Probably. In layman’s terms, cortisol is released when stressed, leading to insulin resistance, and around we go.

The “five types of diabetes” headlines are all abuzz recently. Yet, I believe that there are much more likely to be 5 gazillion types of diabetes, all manifesting across a spectrum that caters to our individual genetic makeup, environment, and so on. This includes our traumas, or lack thereof. Just as other major autoimmune diseases go through times of “flares,” so does type 1 diabetes, in my opinion (and despite our reluctance to use the term). Trauma can potentially be the cigarette lit by the gasoline tank, and it is not far-fetched that this could set diabetes aflame- a “flare” going off in the night.

While I will surely be critiqued for my subjectivity here, I can tell you that behind closed doors many big wig diabetes doctors have entertained, and even suggested, some of this material. Recognizing that trauma may make my diabetes more wily, at times, does not mean that I am giving up or copping out. It has actually provided my healthcare providers and I with some much-needed peace (which, I might add, can positively affect emotional health and blood sugars, and don’t we love how complex this all is?!!!). We can forgive ourselves for the moments where we do everything “right” and the outcomes remain frustrating, and we can draw a more practical game plan moving forward. Although the scenario is not ideal, there are options instead of dead-ends.

The truth is, no one knows exactly the impact of every minutiae of each diabetes story, or healthcare story, or an individual’s overall life story, and we probably never will. But is that any excuse for our healthcare ecosystem to lack supportive resources for folks withstanding the tough stuff? How might we provide quality, holistic care earlier, and better?

Some other Stanford Medicine X (#MedX) Scholars and I tweeted aloud on this idea: What would our healthcare stories, and current health experiences, be had trauma support been different? And, if our healthcare stories were different, how would the larger fabric of our stories as humans be changed?

We unanimously agreed that, at the very least, life would have been easier physically and emotionally. Having that validation that it is okay to hurt, and to seek proper support for what you know is real, can be the difference between being stuck in the quicksand of an overwhelming health condition, or keeping one’s head afloat. I can only speak for myself, but groupthinking about this was incredibly powerful and a lot less scary than Ally-alone-thinking inside my own skull.

If there is a MedX reunion in the future (please!!!), I believe it would speak volumes to collectively gather as advocates initiating this conversation from such a platform. This does not mean that everyone would use a megaphone to discuss things they may not be comfortable sharing. Far from it. Rather, I imagine us simply standing together in unison, acknowledging the common denominator of trauma-truth that is so often overlooked in healthcare.

So, today, I wonder aloud again.

Without trauma:

What would my diabetes be?

What would my mental health be?

Who would I be?

Would I even be an advocate?

Will there be a day when the common denominator in the room is our access to equitable opportunities and resources to achieve our potential, to live full lives despite whatever we have endured, and to feel supported?

What would our society look like, then?

Are we really okay with the current status quo?

How might we talk more about this?

Are we listening?

*This post was updated after the original publication for clarity purposes.

Ah-Ha!

Video of our 2016 Stanford Medicine X panel, Ah-Ha! moments in mental health and chronic disease management, can be viewed here. The panel speaks for itself; it was brave to participate; it was brave to be a member of the live audience- at Stanford and/or online; it is brave to watch the video; it is brave to reflect on mental health and chronic disease management.

Many thanks to Charlie, Danielle, Sarah, Mark, and so many others in the MedX family for making our 2016 panel such an empowering and enlightening experience for so many.

Photo credit: Stanford MedX Flickr

Featured image photo credit: Mark Freeman

Platforms of Courage

“One who has passed away from earth life has said,

‘Kind words and liberal estimates and generous acknowledgements, and ready appreciation, unselfish delight in the excellence of others, these are the best signs of a large intellect and a noble spirit. To be true, to be loving is the secret of Christian growth.'”

A few weeks shy of Stanford Medicine X (#MedX) 2016, I bawled into my coffee mug, deeply moved by Mrs. Jane Lathrop Stanford’s words.

My time at the Cantor Arts Center at Stanford University, as well as our MedX ePatient delegate newsletter, taught me more about the Stanfords. They were a prominent family involved in politics and the railroad business in the late 1800s. The Stanfords’ son, Leland, Jr., was a curator who passed away from typhoid as a teenager.

To honor their child’s memory and love of learning, the Stanfords founded Stanford University in 1891. Mrs. Stanford composed a heartfelt speech commemorating the event, which I encourage you to read in its entirety here.

For me, the most striking aspect of Mrs. Stanford’s speech was her handwritten note after-the-fact of the inaugural celebration: “Not read as expected as I did not have the courage on that opening day of the University- so important in our lives.” She signed and dated the note Oct. 1891.

As I publish this blog post in Oct. 2016, I am cognizant of the poetic symbolism that makes my undergrad English major heart flutter. Firstly, I admire Mrs. Stanford for being an outspoken, successful woman in the time in which she lived. But I respectfully disagree that she “did not have the courage on that opening day.” The anxiety, perhaps? Yet the very act of voicing that anxiety in her notes, in the 1890s nevertheless, is an example of bravery.

Courage was surely present in Mrs. Stanford. Courage molded something out of grief and loss, creating a topnotch university where disease is studied and tamed, where support abounds to this very day so perhaps others are spared the pain that the Stanfords endured.

As a type 1 diabetic for almost 26 years, I, too, have searched for a greater purpose in community despite health woes. Stanford Medicine X is a good place to start. For instance, while my continuous glucose monitor (CGM) alerted to high levels of glucose in my blood, Sophie Thacher’s simultaneously sounded off to an urgent low. We are both type 1 diabetics, connected deeply by our friendship and our willingness to work through the challenging moment together, rather than run from it.

#DOC (diabetic online community) at #MedX love!

Whether attending the conference as advocates, pharmaceutical innovators, healthcare providers, tech developers, students, and so on, #MedX reminds us that healthcare is a human story first and foremost. Here, you will find everyone included™.

With Yoko Sen’s calming voice as our guide, we pondered aloud the last sounds we would like to hear before we die. The Ignite! talks of recently-dubbed MedX Scholars such as Danielle Cosgrove, Jeri Burtchell, Liz Salmi, and Terry Marlin moved us to tears.

We found joy in the coffee break conversations, too- with compassionate leaders like Dr. Bonnie Feldman, who understands firsthand why those of us with autoimmune disease want to safeguard future generations from our conditions.

We shared cocktails, laughter, and inside joke swear words with Elizabeth Jameson and her caretakers, Sheri and Catherine. This dynamic healthcare team is the epitome of grace, resilience, and love. I will carry your example in my heart forever.

Rockstar Charlie Blotner (you’re never losing that nickname!) moderated our MedX panel called Ah-Ha! moments in mental health and chronic disease management, which included myself, Danielle Edges, Mark Freeman, and Sarah Kucharski as panelists.

Panel group selfie via Mark Freeman

Photo courtesy of Charlie Blotner/Stanford MedX flickr

We were humbled by the standing-room-only attendance for our panel, and we want to highlight the want and need for the mental health discussion to be ongoing within the context of managing chronic conditions. As Mrs. Stanford’s note illustrates, sometimes stating what you feel empowers others to do the same.

Photo courtesy of Charlie Blotner/Stanford MedX flickr

Via Twitter

There are days where I physically do not feel well and I am angry at diabetes. Angry that it hurts. Angry that I cannot always hide that fact from my loved ones. Angry that I’m angry. (It’s definitely a thing!)

But then I look around at Medicine X, and all I see is hope. This does not mean complete denial of the bad stuff. Acceptance does not mean giving up. Hope is found in the camaraderie that we share, the things that are said and the unspoken understanding of what does not have to be said, the head nods and the bear hugs.

If I did not have diabetes, I might not be an advocate with the honor of attending Stanford Medicine X. I might not have the privilege of watching my friends Natalie Abbott and Cassius explain Moebius syndrome to a global audience. I might not hear Danielle Edges’ laughter over the phone. No matter how or why I got here, I am eternally grateful to be part of this MedX family.

Life is not about the “I might not’s”. Rather, MedX has taught us that life is about the “How might we…?’s”. How might we be brave, and good? How might we make healthcare better for all?

Together is how we might, and how we are.

Mrs. Stanford may not have stood on the podium and delivered her speech at Stanford’s inaugural ceremony. Yet I cannot help but to think that she now smiles from her heavenly perch as Medicine X rises to new heights each year. The platform was already there for us; we have chosen to use it courageously, honorably, and generously as we connect the healthcare dots to form a more empathetic world. I pray that those who come after us will continue to build upon this structure of innovation, creativity, and goodwill.

As we like to say, the best is yet to come…

#MedX

Images shared are from Stanford Medicine X 2016 and related events.

I attended Stanford Medicine X 2016 as a junior member of the ePatient advisory panel. As such, I accepted a partial scholarship for my participation. My disclosures can be found here.

What’s in a name?

Many thanks to the talented Chris Snider for having me on the Just Talking Podcast this week. We discussed everything from the #doc to mental health to #MedX to how we chose our respective website names. Take a listen here!

Feedback to Feed Forward

September will be here before we know it, and I am excited to share that I will be returning to Stanford Medicine X (#MedX) as a junior member of the ePatient advisory panel. Additionally, I will be presenting in a panel entitled “Ah-Ha! moments in mental health and chronic disease management” alongside wonderful advocates Alan Brewington, Kristin Coppens, Danielle Edges, and Mark Freeman, and moderated by rockstar Charlie Blotner.

Accepted MedX 2016 presentations can be found here. Our abstract includes the following information, some of which is quoted below:

“Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses, we all long for optimal mental and physical health to attain good quality of life.

How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant healthcare interactions in the lives of others?

This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing healthcare.

…Ah-Ha! moments relevant to the following topics will be discussed:

Why the words we use matter so much
Barriers to care
Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
Caregiver resources and how to talk to children/teens about difficult health topics
Managing multiple diagnoses
Curtailing advocacy “burnout””

Source (linked here): MedX 2016 accepted presentations, “Ah-Ha! moments in mental health and chronic disease management.”

In preparation for our upcoming panel, we wanted to reach out to our respective advocacy communities to see if there are pertinent points that you would like us to consider and to possibly discuss in the panel (time-permitting). I recently wrote about the diabetic online community (#doc) needing to hear more from “The Whole” in diabetes, and this is a good platform by which to reflect upon feedback from multiple sources. While one presentation cannot represent all affected by health conditions, we can try our best to integrate community viewpoints into what we discuss.

With that said, if you have ideas about mental health and chronic disease of any type, please feel free to contact us. We would love to listen to your perspectives! My contact information can be found here, or feel free to comment on this post if you are comfortable sharing your thoughts publicly.

Thanks for your support! We are so looking forward to MedX!

Chocolate and Nightmare Visit Boston

I recently had the honor of accompanying my Stanford Medicine X (#MedX) bestie, Danielle Edges, and her young daughter, Alex, on their visit to Children’s Hospital Boston for a heart catheter procedure. Alex has a congenital heart disease called heterotaxy, additionally complicated by liver and spine issues. Danielle’s honest perspective on her family’s life with CHD can be found on her blog, Life is hard. Wear a Helmet. Adventures in Life. With Danielle’s permission, I am sharing my take on her family’s bravery here.

I joined the Edges at their hotel room because Alex’s heart cath had been postponed a few hours. Danielle and Alex had endured many tiring hours of travel across the country two days earlier. The good news about the delay in the procedure was that I got to hang out with them for a few hours away from the beeping of hospital machines and the drowsiness of anesthesia. The bad news was that Alex could not eat before the heart cath, so adding an extra few hours to that timeline was understandably not ideal.

MedX and MedX’er-in-training selfie.

Alex’s lively spirit was contagious despite being hungry, however. Danielle and I are both known to say what we mean as healthcare advocates, which is probably why we click so well. I saw Danielle’s energy and wit in Alex, who is well-versed in medical lingo after many hospital stays in the past. (We totally have a future MedX’er-in-training!)

We tried to distract from the hunger pangs by coloring birds in a coloring book, or playing with Alex’s new stuffed puppy toy that the Fairy MedX Godmother, Ally, brought along for the hospital stay.

“I love my present.” -Alex. (Complete with Chocolate, the puppy, picture).

“What is that? I want one!” Alex proclaimed, pointing to my Dexcom receiver.

We discussed how we were similar in some ways, as Alex has a medical device connected to her as well- a G-tube to help her get the proper amount of nutrients each day. Her blood sugar can also dip low due to her liver condition, and who doesn’t like a communal grumble about hypoglycemia?!

Soon it was time to head over to the hospital. The air was frigidly cold on our short walk there. This was my first time stepping foot in Children’s despite decades of treatment nearby at the Joslin Diabetes Center and having family and friends who have received lifesaving care at BCH. Simply walking through the main entryway is a moving experience; there are families from all over the world, children with conditions both very visible and very invisible, all there to seek topnotch medical care at the best children’s hospital.

We were taken to a hospital bed for the preparations prior to the heart cath. A kind nurse gently informed Alex that she would need IV fluids. The nurse spoke directly with Alex, not at her. Alex was treated like the informed member of the healthcare team that she is, even at only eight years old.

Another nurse came in and the IV insertion was done before we even blinked. Kids tell it like it is, especially complex-medical kids whose perspectives are better than most. So, Alex looked right at the nurse and said “Ow,” and then immediately went back to watching TV stoically while Danielle and I chatted.

The nurses were so impressed with her courage that they rewarded Alex with a dark brown and black beanie baby puppy to complement Chocolate, the larger brown and white puppy.

“What is the new puppy’s name?” the nurse asked.

Alex had just been poked with a large needle. She was ravenous and about to undergo a difficult medical procedure.

“Nightmare,” she aptly replied.

From the mouths of babes, as they say. I will never forget the humor and irony in that moment for as long as I live.

Rocking out with Chocolate and Nightmare.

Shortly thereafter, a nurse anesthetist administered medication to prep Alex for the heart cath, and it was time for her to be wheeled into the surgical room. As Alex dozed off, Danielle whispered that she loved her, and Alex whispered back, “I love you, too.”

In these moments, Danielle had to be strong not only for herself, but for her medically-complex child, as well as her daughter and husband back home. She is truly SuperMom, as evidenced by the poise she and Alex exhibited throughout the long day at the heart center.

I, on the other hand, do not always handle hospitals so well. We had not eaten much over the course of the busy day, and suddenly everything hit me all at once. The doctors came to the waiting room to speak to Danielle while Alex was in recovery. Danielle can explain the details far better than I can; please see her blog post here. In layman’s terms, there was good news peppered with difficult news.

We then proceeded back to Alex’s room. A nurse was with us as Alex slowly roused from the heavy sedation. This same nurse called Danielle with updates every hour while Alex’s heart cath went on, proving once again why Children’s Hospital gets every detail right. As I watched this little girl arising from such a long fight, my head suddenly started to spin. The room was hot, and my Dexcom indicated a fairly fast blood sugar drop.

I alerted Danielle and the nurse, who brought me some water and this adorable tiny carton of orange juice just in case I needed it.

OJ for the diabetes win.

Half of a granola bar consumed later, and I had recovered just as quickly as the dizzy spell had appeared.

“Diabetes is so… constant,” Danielle remarked afterwards.

“Yes, but so is all of this,” I replied, glancing around at the machines in Alex’s room.

Our respective diseases can act up in the exact moments when we wish they would behave; but the understanding and support that we have gained through our friendships at MedX and through ePatient communities have made those moments less scary. That much was articulated by those two sentences exchanged between myself and Danielle, an unspoken understanding and respect bridging the gap between health conditions.

As the evening progressed and Alex was moved to a new room for overnight observation, it was time for me to head back to Rhode Island. Danielle’s night was just beginning, though. There would be more IVs, chest xrays, and medications to be delivered, and this Mom would be by her daughter’s side through it all. We hugged and parted ways, knowing that we would see each other soon.

*****

To simply state that the Edges family is inspiring does not do justice to their story. I can best describe their strength by detailing a tiny moment in the grand scheme of the heart catheter day.

While we waited for Alex to be called in for the procedure, Danielle and I conversed in our signature animated dialogue, talking about hopes and dreams for healthcare, how much we missed our MedX friends and could not wait to be reunited, and more. Alex was quiet and focused on the cartoons playing in her room. She had an IV in her hand and was about to receive sedation medication before having an investigatory procedure performed- and, later, some intervention procedures- in the hopes of improving her quality of life. This was big stuff for a little kid.

I heard soft noises in the background as Danielle and I spoke, and I at first thought that Alex was crying or whimpering in nervousness before being taken away from Mommy. But then I listened more closely.

Alex was not crying. She was humming.

This child was about to have dye injected into her heart, to have coils installed to curtail pulmonary AVMs, to lie on a stiff operating table that would anger her scoliosis, to be in pain.

Yet despite it all, she was still happy.

She was humming.

To help get the #EdgesToBoston this summer, please see here.

25.

Today is my 25th diaversary, a day I have anticipated with the whole spectrum of emotions inherent to living with diabetes. If you want the lovey dovey, Rah! Rah! diabetes blog post, I can happily refer you to last year’s diaversary musings. This year, the raw emotion needs no further introduction.

Sunday, September 27, 2015. Stanford University, Palo Alto, CA. Medicine X.

“Ahh! Dr. Bonnie Feldman’s autoimmune disease workshop already started! We have to go!” I texted my Stanford Medicine X (#MedX) buddy from Minn-e-so-tah, Britta Bloomquist.

As I hurried upstairs to the correct location, I found Sophie Thacher, a fellow diabetes advocate, and encouraged her to join.

The three of us bustled into the room just as the opening remarks were concluding, and Dr. Feldman, et al. welcomed us heartily. As I took my seat at the front of the classroom, an easel used for brainstorming ideas crashed down upon my head.

Clearly, we had arrived in comical style…

Britta introduced herself first, describing how she navigated the healthcare delivery system of Minnesota in search of proper diagnosis and treatment. When the spotlight landed on me, the words tumbled out in a nervous haze.

“I was diagnosed with type 1 diabetes just before my third birthday. January will mark 25 years since my diagnosis.”

In my mind, time stood still. My glance met that of a young doctor sitting in the middle of the room, and he seemed like one of those cartoons with thoughts encapsulated in a bubble coming out of his head.

But you’re so… young, the doctor thought.*

Yes. How has a quarter-century of living with this disease gone by already?, I blinked back in reply.*

Frankly, 25 years of diabetes is mind-boggling to me. To say those words out loud to a room full of people who “got it” was a moment that redefined my relationship with my disease.

You’re still here. Do something with that gift.

Yes, I am young. Yet my body has been poked by over 202,000 needles since my diagnosis. Diabetes has been there for every major life event: birthdays, senior prom, academic graduation ceremonies, and more.

At times, diabetes has kicked and screamed and thrown punches at the most inconvenient moments. I have shed my fair share of tears hidden in bathroom stalls and parking lots.

My 25th diaversary thoughts are an emotional teeter-totter. I feel empowered by wonderful patient communities; lucky to have somehow escaped diabetes’ truly abusive potential thus far; thankful for family, friends, and healthcare team members who loyally support my fight; disappointed that with all the braniacs in the world, the diabetes code has still not been cracked; not surprised because the one unspoken truth about diabetes is that it is a #JerkFace; yet hopeful that my future children and grandchildren will not have to know what this jumble of emotions feels like, because we are that much closer to cracking the diabetes code than we were 25 years ago.

What I most admire about diabetics is our willingness to exceed diabetes’ persistence. If diabetes is not going anywhere in a hurry, neither are we.

Life with diabetes is one big run-on sentence, after all. Every. single. morning. we wake up and face our reality. We scramble eggs and put on clean clothes and go to school or work, all after making life-sustaining treatment decisions and prodding our skin with needles and somehow maintaining the faith that a better day will eventually arrive. That is all we can really ask of ourselves- to keep the faith.

To see 25 is a poignant reminder of the many lives touched by this disease. My heart breaks for those who never got the chance to reach this milestone. I know that they are in a better place; heaven doesn’t care about silly things like basal rates or pre-boluses. But I still hurt for their families and friends, for the joyous spirits prematurely taken from this world.

On the day of my diagnosis, I was rushed to the Emergency Room with a blood sugar value of over 900 mg/dL after my mother recognized some of the symptoms of type 1 diabetes and brought me to a local lab to test one drop of blood. The doctors and nurses were frantic to save me. The previous day, another child- about the same age as me- passed away at that very hospital; his type 1 diabetes had not been diagnosed and treated in time.

I do not know that little boy’s name. I do not know his family, or who he would have become. But this 25th diaversary reflection is just as much about his story as it is about mine.

*****

When I was a child, my father occasionally climbed into bed with me in the morning. He would prick my finger to check my blood sugar, squeeze the blood onto the test strip, and determine the proper insulin doses.

He would also hug me tightly, whispering, “If Mommy and I could take diabetes from you and instead have it ourselves, we would do that in a heartbeat. One day soon there will be a cure. We will eat whatever we want and never have to worry about insulin again.”

My back turned to him, I discreetly wiped away tears until he left the room.

The cure may be 25 years tardy as far as my family and I are concerned, but what is most important is that it eventually gets here. If the cure does not arrive in time for me and you, then we have to at least scatter the trail of breadcrumbs for those who will come after us. Our diabetes legacy is not so much about the individual A1c results, but more about how we make the world better before we leave.

Until diabetes is a thing of the past, I will always be that little girl, blinking back tears in an act of strength, praying for the cure.

Here’s to 25.

*Cartoon thought bubbles source: Microsoft Office clip art

**Facebook has deactivated my personal account because apparently they forgot to have an extra cup of very light, no sugar coffee last week. (Facebook’s overly-dramatic names policy is not in favor of the nickname on my account. #LameBook) In the meantime, please follow my Facebook fan page here and share with your friends. Thanks!

After #MedX: The Big and The Little

A few weeks before attending Stanford Medicine X (#MedX) 2015, I wrote down my thoughts about life in the “Before #MedX” stage. I knew that this experience would be life-changing, inspiring, and empowering, but if I multiplied those factors by a billion, I still would have underestimated just how powerful the #MedX experience was for those of us who were so blessed to be there.

We talk and tweet a lot about the big moments at #MedX: when Cyrena Gawuga brought the crowd to our feet during her Ignite! talk, which chronicled her personal growth in the face of what previously seemed like a failure; when Abby Norman carried us through the whole spectrum of feelings- from hysterical laughter at her wit and humor to blinking back tears in awe of her journey to get properly-diagnosed with endometriosis and appendicitis; when Julie Flygare illustrated that anything is possible despite narcolepsy; when we marveled at the strength and determination of Emily Kramer-Golinkoff, who is improving the lives of those with cystic fibrosis as they race against time (side note: I was totally “fangirling!”); or when Ben Bahan taught us that he can communicate and listen (and do so with a sense of humor that rivals Amy Schumer’s!) despite being deaf.

All of those moments were just- Wow. My fingers couldn’t tweet the powerful one-liners fast enough. Every sentence spoken was just that darn spellbinding.

As much as #MedX completely renews your sense of purpose and advocacy with the big headliner stories, it also reinforces those concepts in the little, behind-the-scenes moments.

I received support from #MedX before I even stepped foot on the Stanford campus. When a good friend’s child was diagnosed with a serious condition recently, I sought advice on what to say and what not to say (from a 2015 ePatient who I will not name here to respect my friend’s privacy; ePatient, you know who you are- thank you). The #MedX advisory board and administrative staff made sure that all of the i’s were dotted and the t’s were crossed to ensure a pleasant experience for conference attendees. #MedX alums were always available to yield my rookie questions at all hours of the night. At the ePatient dinner, our hearts overflowed with compassion and respect for one another. The list of human goodwill goes on and on when it comes to Medicine X.

From a diabetic online community (#doc) standpoint, I enjoyed talking about the highs and the lows with Chris Snider, Amy Tenderich of Diabetes Mine, Sophie Thacher, Meredith Hurston, and Dana Lewis- who carried her (artificial) pancreas in her purse, which automatically ranks her pretty darn high in my book of praise! It was refreshing for me to be around people who understood without me having to really say anything, who could swap campfire tales of funny diabetes moments, and who were so passionate about our #doc advocacy endeavors.

The #MedX workshops were particularly informative and interactive. Dr. Bonnie Feldman enthralled us with her autoimmune disease research, and we pledged to keep in touch and work hard to crack the autoimmune code as a community. My good friend and fellow ePatient, Danielle Edges, held a workshop on eHealth in pediatrics, which featured her family’s brave story of caring for a daughter with a congenital heart defect called heterotaxy and another daughter who is secondarily impacted by having a sibling with a chronic condition. It was so uplifting to witness this Mom, who would go to the ends of the earth to help her family, whose humor remained intact in the face of challenging circumstances, and whose loyalty and friendship is beyond measure.

#MedX is renowned for bringing together the various participants in the realm of healthcare. We hear the term “Big Pharma” thrown around quite often online. But I can assure you that the pharmaceutical representation at #MedX was laser-focused on getting the little details right and connecting with the patients whom they serve. I was asked, “What can we do for you? What message do you want us to hear from your patient perspective?” I was so humbled by their willingness to listen and their desire to drive innovation.

There were also the little moments at the Sheraton pool, where ePatients and other #MedX attendees dined after the day of conference events concluded. Nisha Pradhan’s passions for advancing anosmia research and providing an empathetic medical experience were contagious. Britta Bloomquist taught me about life in northern Minnesota and juggling Lyme disease and ankylosing spondylitis. Kristin Coppens was an example of grace and determination while managing multiple chronic conditions.

Natalie Abbott and her service dog, Cassius, educated us on Moebius syndrome, a rare disease only diagnosed in 1,000 patients thus far. Natalie and Cassius were the epitome of a good team; they worked together seamlessly, never complaining. I gained perspective that I must admit I very much needed by watching Natalie and Cassius together: Moebius syndrome is a passenger along for the ride in Natalie’s very-accomplished life, not the other way around. We can apply that same lesson to every sort of adversity in life. Thank you for inspiring me so much, Natalie and Cassius!

There are so many other big and little moments from #MedX which I would love to highlight, but the truth is that I could write a novella about how great each individual who attended is. I would like those reading this blog to know that #MedX is a phenomenal experience because of the positive, enthusiastic, dare-to-dream-big nature of its attendees. We are without a doubt going to change healthcare for the better. Heck, we already have, and we’re just getting started.

The best way to summarize what #MedX means to me is to leave you with a story. (We really like stories at #MedX!):

I woke up having some concerning diabetes issues on the first day of my #MedX experience, the pre-conference Healthcare Innovation Summit event. To be honest, I felt quite ill. My mother convinced me to take the shuttle to the conference location. There would be plenty of healthcare geniuses around if I needed assistance, she advised. How very, very true.

As the day went on and I took many insulin injections, my diabetes situation began to improve. The group disbanded for an afternoon coffee break, and I walked to a bench in the shade of the Stanford campus. Eventually, a professionally-clad woman sat down on the neighboring bench.

“This shade is so welcome,” she noted.

“Absolutely, and it’s nice and quiet here- a good opportunity to take a breather,” I replied.

And so we chatted. She was at #MedX representing her healthcare company’s new technological product. Her excitement for the tech’s potential to improve lives was palpable, and it was clear she loved her work.

“Can you explain to me what an ePatient is?” she asked.

“We’re all here to advocate for our respective causes. We believe wholeheartedly in improving healthcare, in humanizing the story.”

“Is diabetes… hard? As in, does it impact you a lot?” she asked tentatively.

“Sometimes…,” I admitted. “We fight hard for our health every day. But we believe in a brighter future. Isn’t that why we’re all here to begin with?”

And with that we walked back towards the conference hall, two people on different sides of the healthcare equation, united by a common ambition to help others.

That’s what #MedX is all about. It was my greatest honor to attend this year, and I would like to sincerely thank everyone at Medicine X for sharing their perspectives. Keep doing big (and meaningful little) things.

Disclosure: I attended #MedX on a partial scholarship as an ePatient delegate. Opinions expressed here are strictly my own.

^ With the world-famous #MedX mascot, Zoe Chu! ^ Excited for #MedX!

Before #MedX

Last year’s Stanford Medicine X (#MedX) took place during the same weekend that I created my diabetes blog, Very Light, No Sugar. I was new to the internet blogosphere in September of 2014, and I spent much of my time that weekend soaking it all in.

This exists?! THIS! These concepts that have been bouncing around in my head for so long have a place and a name and a community?! Perhaps I can be part of it? Everyone seems friendly and cool! YES!!!

These were my initial thoughts as I perused the blogs of the diabetic online community (#doc) and followed the #MedX hashtag as ePatient delegates and other MedX attendees tweeted live from the conference. I later watched videos of the MedX 2014 speeches, read blogs of MedX alums, and visited and re-visited and re-visited some more the 2015 ePatient application portion of the Stanford Medicine X website.

I made the rookie mistake of writing 1,000-word answers to the MedX application instead of providing 1,000-character responses as instructed. Upon discovering this issue, I stripped my answers down to the core of why I felt so passionately about this conference and improving healthcare, and I finally clicked “submit” late one evening. Fast forward to now- about five weeks away from MedX 2015- and I could not be more excited to be an ePatient delegate this year and to share the information absorbed at the conference with all of you.

MedX is so special because it takes the “What if’s?” and does not shy away from them in fear. Rather, MedX imagines and creates the possibilities. MedX connects the respective patient, provider, and technology dots of the healthcare equation by putting them all together at the same conference. They are allowed to work together, to dare to dream big, to share the positives and the negatives of their personal healthcare experiences, and to learn from one another in the process. Recognizing that healthcare is an ongoing evolution, MedX keeps the conversation going before, during, and after the conference.

Many MedX alums have noted how much their lives were positively-influenced by attending MedX. With the conference just around the corner, I find myself keenly aware that this is the “before” stage for me. I study healthcare, work in it, live it through my experience as a type one diabetic, and have moments of inspiration and frustration along the way. After attending MedX from September 25 through September 27, 2015, I will gain a viewpoint that covers a vast array of healthcare experiences- those of other patients, those of providers, and those of technological gurus and innovators in the healthcare field. This will be the “after” stage. I already know that this opportunity is a blessing beyond what I can imagine right now, and I am so very thankful to get to attend MedX 2015.

I am most excited about learning from different perspectives while at MedX. Although I know a lot about diabetes because I live with it, I recognize that healthcare goes far beyond insulin injections and endocrinology. At MedX, there will be industry leaders discussing breakthroughs in technology, ePatients who have battled brain tumors or acted as caregivers for their loved ones, and providers who put their patients’ best interests first and foremost. Taken together, all of these contexts are a valuable asset to improving healthcare as a whole.

The fellow 2015 ePatient delegates to MedX are a great crew of people, as are the Stanford Medicine X administrative team and advisory board. MedX participants come from diverse backgrounds, encounter different health obstacles, and have unique experiences from which to draw from. Yet we share an unspoken comradery before even having stepped foot on the Stanford campus. We have put ourselves out there online because we believe wholeheartedly in improving healthcare. We advocate for better access to care, more open dialogues amongst all members of the healthcare equation, promising futures for those who endure our respective disease processes, and more. We know the feelings of joy on the good days and pain on the bad days, and we maintain hope that the best is yet to come in the future. MedX provides the perfect environment in which to work hard towards these goals and to be a part of the conversation about improving healthcare.

For more information on Stanford MedX, please visit medicinex.stanford.edu.

Disclaimer: I have received a partial scholarship to attend MedX as a 2015 ePatient delegate. Opinions expressed here are strictly my own.

Speak Your Mind

I’m doing some research for one of my grad classes with a focus on how the Affordable Care Act impacts quality of care. While there are objective measures of quality such as hospital reimbursement rates, I believe the patient perspective is invaluable as well. Quality, then, must be addressed and defined from the various view points of those in the health care system.

I would like to gather some patient responses prior to my presentation. Personally identifiable information will not be included, rather, the aggregate of the information provided to me will be summarized for my class.

So, if you have an opinion on how quality affects your health care, please comment here or feel free to contact me over the next few weeks.

What would you like to see change in terms of quality of care?

Do you think that the way your health care providers measure quality is an adequate representation of the type of care you receive?

Have you noticed changes- good or bad- in your quality of care since the passage of the Affordable Care Act?

Is your health care delivery environment upfront about how they plan to improve the quality of your care?

These are just starting points, but any and all information provided will be useful and is greatly appreciated.

Thanks for your help!

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