“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.

The Good Samaritan Lot

“This parking lot is open until full.

Brought to you by the Church

across the way. Give what you can.

Pay it forward. Come again.”

Despite the red paint peeling back,

the sign still read All Are Welcome.

 

I sobbed in my car

while the waitress

from the pretentious lunch

we’d attended

twenty minutes prior

smoked her cigarette

and pretended not to notice

the rivers of mascara

flowing down my face.

 

The waitress “didn’t notice”

not because she was cruel,

but because of my stubborn pride

and all. The cigarette ash

fell to the green earth.

 

I drove away, wanting to hit the gas

but circled back to where I started

Stuffed ten dollars into the donation box

 

And for the first time that long-ago day,

it was enough.  It was simply enough.

 

 

 

On Survivor’s Guilt and Showing Up Anyway

Improvised explosive devices (IEDs) forever-altered modern warfare.  IEDs brought other abbreviated terms to the forefront of our vocabulary: traumatic brain injuries (TBIs) resulting in loss of consciousness (LOC), post traumatic stress disorder (PTSD), motor vehicle accidents (MVAs).  Amputations.  Multiple casualties incurred.

Survivor’s guilt.

One inadvertently wrong step can trigger a deadly IED blast.  Imagine the weight one carries if you so happened to own that misdirected foot.

While living with type 1 diabetes (T1D) is in no way equivalent to active duty in a combat zone, sometimes T1D feels like its own type of minefield.  Bravery becomes the keyword.

It has, undoubtedly, been a trying time in my life.  If you’ve stuck around to bear witness to some of it on Twitter, thank you.  I know it hasn’t been easy, but I promise you it has been real. 

My blood sugars have suffered the consequences of life’s chaos.  I feel like I am back in the high school days in which I injected insulin and hoped for the best, which was often simply surviving the day.

I am confident that with access to proper, multifaceted healthcare treatment, I will see positive effects on my health.  Yet, so much of that is to be determined by third parties and real life responsibilities dictating the courses of treatment.  And in the meantime, there is a human being who never gets to take a day off from living this and feeling this.  She puts in 110% effort, but, the results do not always translate.

Scientifically-speaking, the odds didn’t look to be in my favor for my recent 2018 tour-de-New-Year-healthcare-appointments.

And yet, after lots of prayers:

“Your eyes look great.  How’s everything else going?”

“You know how it goes.  It’s been tough, but I’m trying to improve.”

“That’s what matters- trying to improve even when things are tough.”

 

 

“Has anything ever made you fundamentally change your mind?  I mean no disrespect by that question, and it does not have to be a medical example.  But, what moves you?  The data we can see on this paper?  Emotion?  Find that answer and use it here.”

That is the first time I can ever recall a healthcare provider (HCP) directly asking what I care about.  (Guinea pigs, for the record.)  Similarly, I’ve occasionally placed down my armor and been vulnerable in order to have these open conversations.

We went on to discuss CBT (cognitive behavioral therapy) in managing physical health conditions.  So often we see CBT as a mental health treatment option, but those skills can apply to anything and everything in life.  Diabetes is no different.  Because the HCP inquired as to what was important to me, we were able to construct a realistic, workable plan to move forward.

My A1c pinged in at 0.1 below the stratosphere level that I was dreading it may be in.  Physically, the 0.1 difference between an A1c of X.9 or Y is negligible.  But mentally, it is huge.  In this case, it becomes motivation rather than deflation.  And yet, it shouldn’t be that way.  I know that rationally such numbers are a compass guiding us home.  ‘Stratosphere level’ in my personal diabetes vocabulary relates to that overall crappy feeling, rather than a place of harsh critique.  Yet those numbers so frequently get thrown around in the healthcare blame game, and often times we can be our own biggest bullies.

After 27 years of living with type 1 diabetes, my main takeaway is that T1D is a total crapshoot.  We don’t always want to believe that.  There is the fable of “control” over the often uncontrollable.  There is an uneasiness in sitting with the harsh reality that a disease may decide to do what it wants, when it wants.  So, we construct narratives to counter that.  Maybe we should focus more on living rather than surviving situations yet to be determined, though.

We overemphasize what the human being should and shouldn’t do along the way so that if and when the scary stuff happens, our blame game trigger-fingers have a target.  That target is a person who tried his or her hardest, even on days when it feels like more would’ve, could’ve, should’ve been done.  Showing up is trying.  Keep showing up.

Now, don’t get me wrong.  I want us all to hang our hats on hope and to try our best- whether we find it in daydreams of a cure or we figure out a decent way to eat low carb or what have you.  Diabetes may very well be a manageable condition for some.  But we are doing a disservice to all people with diabetes (The Whole) if we do not acknowledge that “some” is not “all.”  There are psychosocial, socioeconomic, environmental, genetic lottery, healthcare access, and so many other factors at play in determining the ultimate course of an individual’s diabetes.  Diabetes manifests across an illogical spectrum.

I dodged bullets recently.  I got second chances.  I feel a legitimate level of survivor’s guilt, like my own foot easily could’ve tripped the diabetes IED line but I Cupid-shuffled to the left just in time.

There are people out there with lower A1cs than mine who also try just as hard as me.  I will never judge anyone for their diabetes.  You could tell me you chug 2-Liter Coke bottles on the regular, and I would still say there’s likely psychological pain hidden behind that coping mechanism.  I will support you in your healing.  Simply by showing up and having shown up over time, you are already at 110% effort status.  You do you.

Genetics may play a role in others’ numbers compared to mine, for example.  Yet those same genetic factors may also be why they hypothetically develop complications despite tight A1c’s, and the person dodging bullets does not at this point.

Hitting “publish” on this blog feels like one big jinx.  Will diabetes and its potential havoc-wreaking always be this way for me?  Only God knows that answer.  There will likely be more times of evading danger, and other times where diabetes strikes out of nowhere.  I will deal with those times as they come.

The benefits outweigh the risks in publishing this blog.  Once we start being more honest about diabetes being a JerkFace, we can stop seeing ourselves as diabetes management JerkFaces-In-Chief.  How I wish someone had told me that in high school.  Or even if my recent A1c had hypothetically been Y instead of X.9.  You tried, Current Ally or High School Ally.  It wasn’t pretty, but you showed up anyway.

The bottom line of our focus should be on the ultimate abbreviation- quality of life (QoL).  The HCP was spot on in her questions: What motivates you?  What will drive the changes that you want to see?.  If we can answer honestly, if we soul-search and find our why’s for continuing to show up and try, well, I’d say that’s a worthy battle no matter the outcomes.

 

 

*Not Another Mount Everest Story*

Today marks my 27th diaversary.

 

My detailed reflections are still there.  But, to speak my current words, I just require a proverbial megaphone and a rooftop to shout from:

 

It remains unconscionable that there is no cure. 

#weneedacure

 

Diabetes has made other things more difficult.  And other things have made diabetes more difficult.  And around we go.

Behind all of that, I see a human being.  Her eyes look back at me in the mirror, tired.  She will never stop fighting this disease, and she drinks a lot of coffee.  But, damnit, she is tired.  

There’s still so much left to accomplish. It’s certainly doable. But, it feels like a lot a lot a lot. 

She is telling her truth here because that is the realest advocacy she can offer today.

There were many times when she did not want another “climbing Mount Everest” diaversary story.  She simply needed a beer with a friend (or an affirmative blog post), a friend who could not reasonably promise that it would all be okay.  But that friend would sit beside her and say cheers to #weneedacure anyway, because it was the bravest idea they could hang their hope on.

This is the “tell your truth” edition of the Mount Everest story.

Sometimes, that truth hurts.  Tell it anyway.

Advocacy lives in the stories and in the people with the eyes, staring back at us in the mirror.

It is more than enough.

 

#weneedacure

  

#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