Coffee Date #2: Elizabeth Rowley and T1International



A:  What led you to develop T1International?


















  4. campaigning and advocacy advocating for systemic change






A:  Favorite beverage?

E:  Flat white  🙂

Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.


This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  




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!


Whole Milk With The Disclaimers

This will not be my most popular blog post ever.


















































So, here are my disclaimers:






Thank you







UHC/MDT Debacle Through the Lens of a Bruised Insulin Injector





I do care.





At least that’s how I try to imagine it.

















We are the people who care.

Medtronic and UnitedHealthcare, do you care enough to join us?




A 1 c.

My A1c was lower at my recent endo appointment.  Not by any earthshattering amount (and we still have a long way to go), but “lower” is enough for me right now.  In fact, my recent A1c was lower on a shots regimen than it had sometimes been while using an insulin pump.

I thought I’d write some overly-emotional, 2000-word essay on how much the lower A1c means to me being back on shots.  Instead, I’ll take my lack of wordiness as being one step closer to making peace with what happened to me and as a reminder to continue to advocate for others who need insulin.

Frankly, I am still bitter about how much I suffered due to defective insulin pump products.  A few tech glitches per year are understandable, as tech does not equate to properly-functioning islet cells by any means, nor should it pretend to do so.  But to have bi-weekly episodes of near-DKA due to tech issues is inexcusable.  It breaks my heart to think of other people out there who may be going through what I went through, who simply want someone to believe them and to make it all better.

Thankfully, through the support of the #doc and some topnotch doctors and nurses, I am still here, I feel alive again, and I am getting into a better diabetes groove on multiple daily injections.  The bruises are a visible reminder that diabetes does not go away no matter which treatment one pursues, but for me they are a small price to pay for the assurance that insulin gets into my body every day.

I’ve said it before and I’ll say it again: do what works for you, whether that be insulin pumping or injecting or artificial pancreas-ing or Afrezza-inhaling.  I just want all of us to feel good every day.  But I also want those who experience tech problems to know that they are not crazy or “bad” diabetics.  We are human beings; technology is technology; and, ultimately, #weneedacure. 

But what about the people who don’t have a plethora of options?  Having spent many days in bed with ketones when my insulin pump malfunctioned, I often find my thoughts traveling to Spare a Rose nowadays.  I will never take insulin for granted again.  When insulin was not getting into my body, I was like a fish out of water, slowly and painfully fading away.  Kids without insulin suffer like that each day.

We must work hard to improve their access to life-sustaining insulin. 

Diabetes is difficult enough to tame with insulin, never mind without it. 

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.

MedX stage

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.

     Zoe Chu                         MedX sign

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

The Balancing Act


This blog post appears as part of Diabetes Daily’s Diabetes Social Media Burnout Day.

Much like diabetes is a balancing act between the highs, the lows, and everything in-between, so, too, is social media advocacy.

I find myself pulled between extremes: excited when having a great day, frustrated when things go awry. How much should one vocalize these feelings? It is no secret that I wear my emotions on my sleeve, especially on Twitter. But I always hope to lift others up by being transparent with my diabetes experience, rather than to tear down anyone’s mood by being too-transparent in a Negative Nancy moment. Again, life is a balancing act.

On the one hand, I am so proud and thankful to be a part of the diabetic online community (#doc). I want to scream it from the rafters so that my non-#doc world knows how great it is. But on the other hand, I love my #doc cocoon just the way it is: bursting at the seams with people who “get it,” devoid of judgment from those who do not “get it.”

The #doc may have differing opinions on various topics (Should we inhale insulin, or inject it, or pump it, or pray harder for a cure?!!!), but at the end of the day, we all understand without needing to say much. We know how tiring it can be when the CGM line continues to drop down no matter how many juice boxes are guzzled. The non-#doc sphere requires some introductory, explanatory information in these, and similar, circumstances.

For example, there is a large difference in screaming, “I’m high!” to my diabetic relative, versus yelling the same phrase at a baseball game and receiving some weird looks in response. I can Instagram a picture of an empty Juicy Juice box on my nightstand, and the #doc immediately understands. Whereas I may need to explain to my non-diabetic friends why overnight hypoglycemic episodes can be dangerous. Most of the time, I enjoy educating others about diabetes. But especially during times of burnout, I simply want to get on with my day and push diabetes aside.

There is a weird juxtaposition of advocating outside of #doc territory.  I often want society to respect diabetes for the jerk that it is, so I may post a picture of a CGM graph showing 55 mg/dL with a slanted down arrow.  As in, “Wow, I survived that sh*t!  Heck, yes!”  The media does not always portray just how strong we are.  We deal with life-threatening lows and highs, and we start over the next day.  Some of us have not been so lucky, and we mourn their losses and raise awareness for their stories.

Yet these measures of advocacy often draw out the questions that make my skin crawl.  “Is your diabetes still bad?”  You’re missing the point.  Diabetes is an enormous Swear Word, a complex beast that we do our best to tame.  If I’m talking about diabetes often (I am), it is because I want you to hear my story and to respect it.  The non-#doc Wilford Brimley anecdotes provided in response often add to the feelings of burnout.  Social media is overwhelming sometimes, and I can be my own worst enemy when in a cranky high blood sugar-induced mood.

Diabetes isn’t Burger King, and we can’t always have it our way. I cannot simultaneously expect the non-#doc world to understand more about my personal life with diabetes if I do not let them peek inside my #doc cocoon sometimes. They know Ally already, but do they know that I take my coffee very light, no sugar? Some do, and some do not. In order for me to be a better advocate, I do not have to tell every detail to everyone. But I may choose to explain that I am grumpy due to high blood sugar or why I believe so wholeheartedly in finding a cure for diabetes. Achieving that balance of what to share and when to back away from over-sharing can be a difficult tightrope to walk in the heat of one’s emotions.

Generally, I find the #doc to be a very supportive environment, willing to listen to each person’s shared, yet unique, experience with diabetes. If I ever feel stressed out about blogging, then it is simply not the right time to be blogging. It is a purposeful hobby which I enjoy greatly, and I never want it to feel forced.

As for “diabullies,” or internet trolls, or cinnamon-cure-enthusiasts, I have been tangled up in a few instances where no matter what I said, the hole seemed to get dug deeper with them. My intentions here will always be good, and I believe that we should all be able to respectfully agree to disagree if we choose to do so. If a person hiding behind a keyboard is especially cruel, I try to remember that said person is hurting. Bullies target others to distract from their own pain. It does not make it right, but we are all human and we all make mistakes. We should hope that internet bullies one day find the type of love and support that we have within the #doc.

So there you have it: the diabetes blogosphere balancing act. Am I high? Am I low? Am I happy? Am I sad? Should I advocate harder? Should I let others into the #doc cocoon? Is that a friend? Is that a bully? Do we all experience our own versions of diabetes, whether as T1D, T2D, LADA, MODY, CFRD, caregiver, friend, family member? Aren’t we all in this together? And aren’t we all in it for the right reasons?

I believe that we are indeed here for the right reasons, and we share our stories as they unfold.  If you need to take a #doc break because you are genuinely burnt out, then by all means, go on hiatus in the spirit of maintaining authenticity. That, in and of itself, can be a valuable aspect of your own diabetes story. 

If Diabetes Were A Cinnamon Cure





































What we really need is a cure.

pump boxes