“I Be Up In The Gym Just Working On My Fitness”

In the famous words of Fergie, “I be up in the gym just working on my fitness.”  Or, at least I should be for my overall health, as well as my diabetes management.

Admittedly, my exercise regimen has waned in recent times.  During grad school, I was on a mission to do #AllOfTheThings and to do them very well, so I was somewhat of a “gym rat.”  Nowadays, I will meander around the city on my lunch breaks or take a stroll to de-stress after work.  Otherwise, does lifting up a Bud Light and putting it down count as a workout? (Inquiring for a friend…)

Needless to say, when I was asked to review the fabulous Christel Oerum’s eBook, Fit With Diabetes, I realized it was a good opportunity for an exercise and diabetes tune-up, and, perhaps, to help some of my readers/followers do the same.  (See below for my disclosures).*

Christel- Front page

Christel is “one of us,” a fellow person with diabetes (type 1), who clearly has a passion for fitness and healthy living.  She does not come off as “preachy” in the eBook, which is a welcome change to what is customary in literature regarding diabetes and exercise.  Rather, Christel is down to earth and likable.

She acknowledges that there is certainly tough work cut out for us, yet illustrates that our goals can be more attainable through some helpful tips.  As Christel explains in the introduction to the eBook, we each have individualized diabetes and exercise needs, but with a proper framework in place, we can make the process smoother.

From cardio, to resistance training, to nutrition, to workout routines, Fit With Diabetes has us covered.  The various chapters of the eBook are user-friendly in terms of looking up specific areas of focus quickly and easily.  Christel provides real world examples for various scenarios, such as planning effectively for different types of exercise whether using an insulin pump or injections.  From my viewpoint as someone looking to get re-motivated on the exercise front, it was nice to see these firsthand examples.

I believe this eBook is a useful tool for anyone living with diabetes, their support networks, and healthcare professionals, alike.  Christel provides a straightforward guide by which you can generate your own effective course of action.

Please see here if interested in reading the eBook.

Many thanks to Christel for contributing this insightful work to our community!

 

 

 

*My disclosures are the following:

I was asked to review Fit With Diabetes, and I received a copy of the eBook in order to do so.  Opinions expressed are my own.

Thank you to Ginger Vieira for introducing me to Christel Oerum of DiabetesStrong.com and author of Fit With Diabetes.

 

 

 

 

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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.

#MedMo17

*dusts off blog*

I recently enjoyed a trip to New York, where I caught up with my good friend, Mette Dyhrberg, CEO of Mymee.  We presented at MedStartr’s #MedMo17, which I would describe as the healthcare version of Shark Tank but with even more meaningful interaction among all participants in the ocean of health.

For those interested, you can view MedStartr’s #MedMo17 Empowered Patient Panel here.  Our presentation begins on Day 2 around the 4 hour, 41 minute mark.

While not giving too much away for those who want to watch the video, I will mention a few noteworthy takeaways from MedMo17 here:

  • It was an honor to present with such passionate healthcare advocates.  It was even cooler that our panel ended up being all women- such a rarity in the healthcare world.  These ladies know their stuff and have done so much for their respective communities.  The audience engagement was also A+!  Many thanks to MedStartr for having us!

MedMo17

         (Panel photo via Aline Noizet)

 

  • I was totally impressed with mycounterpane.com, a platform created by MS advocate Kate Milliken, who pitched at MedMo17 and also presented on our panel.

 

  • Other shout outs go to socialworkr.com for supporting those who do so much to support others, and to FHIR HIEdrant as an example of good marketing/branding in health technology.

 

  • Some MedMo17 attendees approached me to talk about diabetes advocacy following our panel session.  They reinvigorated my spirits and reminded me why we do what we do (so well!) here in the #doc.  Thank you for sharing your heartfelt stories and for rooting for our cause.  It means more than I can express here.

 

  • Brooklyn has always been on my bucket list to visit, and it was just as charming as I imagined.  I had fun catching up with my first college roommate (who by some miracle is still my friend considering how obnoxious I was freshman year!) prior to my drive home.  #GoFriars

 

  • Finally, thank you to Mette for your ongoing support and for hosting me in New York.  We were instant friends when we met at Stanford Medicine X in 2016, and our foundation of friendship remains strong to this day.  Through the help of Mette’s Mymee app and coaching, I have achieved a better quality of life.  (Watch our panel video to learn more!)  I am eternally grateful.

 

MedMo- NYC

 

 

 

 

 

In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

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Explanation of Benefits

THIS IS NOT A BILL!!!
(Thank God)
This is simply the preface to the bill
so that you can be prematurely pissed off
about who will be taking away your money

 

The EOB outlines the costs
What you owe the doctor
What your insurer owes… someone
What debt your existence owes
to a society that doesn’t really care

 

That Advil pill at the office even though
there’s Advil in a Ziploc in your purse?
Ten dollars. The cup you pee in?
Five ninety-five per ounce
Don’t spill it when you close the window.

 

Does a smile at the reception desk
bankrupt the operation? Imagine a world where
insurance cards do not dictate our worth-
where compassion is doled out, unmeasured
and it’s okay to come back for seconds.

 

Can we quantify the waiting room tears?
The traffic, the tropical island vacation
with family swapped out for appointment slots.
The doctor who is not seeing her lunch break
will see you now, instead.

 

You both are tired of fighting
a system that feels it is better to explain
“benefits” than to explain why
none of this is fair, why your pain
will not break with the fever.

 

We can’t explain why the cancer spread,
its roots strangling the beating heart.
We can’t explain the silent prayers
sent up in parking garages late at night
when the city lights blink off.

 

The explanation of benefits is simple, really:
Sit with us, outside on the sun-bleached bench
On what our brains will dub the Bad News Day
where the whole world stops and all that is left
are the parking garage prayers said outside, together.

 

The Cure

The Cure is the go-to daydream

What we tell ourselves while entwined

in the arms of a lover in a Queen size bed

to calm the “what ifs” circulating in the quiet

 

If we keep calling its name

The Cure The Cure

maybe one day it will hear us

 
If my future hypothetical grandchildren

were to roll their eyes at the thousandth telling

of The Cure story around the campfire

I’d die happy, for they’d only known a better world.

 

 

No Rules Poetry

On Advocacy

Life has been chaotic this year, and my own versions of advocacy have gone along for the up-and-down merry-go-round ride.  I still want to blog about the insulin access workshop from April.  Yes, April.  (Insert disclosure that Lilly paid for my travel, hotel, and meals).  There is so much to say and so little time to beat a figurative dead horse (which died from lack of insulin, in this figurative example).  Yet I will express it at some point, because 1) I promised our community that I would, and 2) I am still wowed by my peers and those with big hearts who are dedicated to improving life with diabetes; these big hearts come in all shapes and sizes in healthcare; the workshop reinforced that idea for me.

There have been other exciting opportunities, too, and the blog posts have been drafted and re-drafted in my head for a long time now.  I believe mentioning these feelings here is advocacy in and of itself.  Sometimes this part of the merry-go-round of life simply is what it is.  Advocacy can wax and wane and broaden and refocus as life dictates.

Reading and watching and writing poetry have encompassed a different avenue of creative expression for me.  Poetry is freedom.  Just go.  It’s funny where and when the roots of an English major choose to spring up.  I’m just happy to be writing in some capacity.

At a recent event with close friends and their families, one ventured to ask about diabetes advocacy.  To respect privacy in this story, let’s call her Friend.  Friend’s relative (let’s call her Relative) has dealt with type 1 diabetes for a large number of years.  Diabetes remains difficult despite the gadgets and gizmos of 2017; I cannot imagine how tough it was way back in the day.  Relative has faced her fair share of adversity in this life.

Friend’s daughter (let’s call her Daughter) explained, “Ally does a lot of diabetes advocacy work, and it’s really cool.”  That statement shocked me back to reality, in a good way.  Someone out there, aside from #DOC folks, actually cares about this!  

I mean, I know people care. But it was refreshing to hear this outside of #DOC-land. There are people who look to our examples of advocacy and find hope. How humbling and, indeed, cool.

Friend was visibly excited to talk to me, and, likewise, I was inspired by her openness and respect for our community.  Another round of drinks later, and there we still stood, steadfast in our shared mission.

“Why isn’t there a cure yet?” reverberated in our ears.

I have asked myself, God, and anyone who will listen that very question in the long 26 years since my type 1 diabetes diagnosis.  To have someone else inquire the same of me was a long time coming.  Not that anyone is to blame, per se.  We all want a better world, one in which diabetes is buried with the dinosaur fossils.

But truly, why isn’t there a cure?  We have the brain power.  We have the amazing labs working steadfastly to help us.  We see the faces of loved ones who represent why #weneedacure.  My two cents are that we remain fragmented in an already-divisive society.  We need to rally together and maintain hope that one day a cure will come.  We are good eggs with sometimes-different goals, and that is okay.  But our goals should center on paving the way for a better world- whether with diabetes, or (hopefully) without it.  My response to Friend was something along those lines.

“Why are people dying because insulin is not affordable and accessible- not just abroad, but here in the United States, too?”

We discussed the name Shane Patrick Boyle.  Keep saying his name.  We talked about how diabetes advocacy is moving the dial on this issue, but we cannot rest yet.  This disease is absolutely relentless.  We have to keep showing that.

Friend and I left the event table knowing that we both still had seats at it.  There is work to be done.  Engagement in advocacy is fluid; such is life.  But sometimes it takes seeing the other people affected by our work to know that we are advocating beyond ourselves.  That is why we started this in the first place, and that is ultimately how we will finish it- together.

Thank you to Friend, Daughter, and Relative for reminding me why we do what we do, and for your loving support.