Pen-tastic

Today’s Dblog Week topic is about tips and tricks.  There are many nuances to my diabetes management.  This injections trick is probably my favorite:

1. Download the mySugr app.

2. Log blood sugars, insulin injections, carbs, and more in mySugr.

3. If your insulin pen does not have one of those fancy calculators indicating when you last took insulin, create your own system to minimize the risk of double-dosing, or forgetting to dose.

4. For example, in the photo shown below, mySugr would have indicated that I already took 3 boluses of fast-acting Humalog today.  For my fourth shot of Humalog, I move the green hair tie up to the #4 drawn in marker on the insulin pen.  Later, when I take my fifth injection, I will move the band up to #5 on the pen.  And so on.

*If I exceed 8 boluses in one day, I simply move the hair tie back down to #1 (which becomes #9 in this case, and according to my logbook information in mySugr.)

**Handwriting was never my strong point.  Sorry, Catholic grammar school nuns!

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5.  Injections are a blur when your body has endured a lifetime of pokes and prods.  This system helps me to keep track of which injection I am on for this particular day.  My hope is that sharing this trick helps someone else.  Get creative with those hair ties!  🙂

 

Disclaimer: This is my own experience; consult with a medical professional before making changes to your diabetes management.

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Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

Words

The third DBlog Week topic, Language and Diabetes, is one that hits close to home for all of us.  Currently, I’m saving many of my thoughts on the topic in anticipation of Stanford Medicine X in September.  At MedX, I will be participating in an ePatient panel on mental health and chronic disease, and language will surely be discussed there.  We hope you will join us- whether physically at Stanford, or virtually!

In the meantime, please see here for some prior thoughts on the words we use, and how we should use them.

 

We hear you.

Many thanks to Karen Graffeo of bittersweetdiabetes.com for organizing the 7th annual diabetes blog week.  For more information about dblog week, please see here.

I am not normally one to be short on words, but this week is a bit hectic for me.  (Head nodding along to Laddie’s great explanation.)  Karen has given me permission for stress-free participation, so here it goes!  🙂

Today’s prompt is the following:

“Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”

I am in the diabetes blogosphere because my life is happier being in it than being outside of it, and I hope that in my own small, empathetic way I have given back to others by being a part of the #doc.

“Dblogging” is responsible for verbs such as, well, “dblogging.”  It creates a community of passionate healthcare advocates, a place to call home when diabetes tries to turn our worlds upside down, and hope for a better future.

The #doc has led to supportive friendships both online and offline, both in our own backyards and all over the world.

BetesOnTap selfie

It is an honor and a blessing to read the deepest thoughts and the most lighthearted inside diabetes jokes that each of you shares on your blogs.  Your companionship in the carrying of the diabetes cross humbles me to my core.

Very Light, No Sugar’s words go out to the diabetic online community.  I also hope that those words somehow reach the lonely, confused diabetic kid that I once was.  I hope that someone who is not yet actively involved in the #doc knows that he or she has a place to come home to when diabetes feels like a lot to carry alone.

I blog for my own emotional well-being, for the #doc friends who are like family, and for those who do not yet have a voice or do not know where to begin.  The #doc door is always open, and I hope that you will join us if you are ready and able to do so.

It may feel like the world is not always listening, but in the diabetes blogosphere, we hear you.

“Wait, what’s diabetes again?”: Perspective from a 9-year-old

“Wait, what’s diabetes again?” my 9-year-old cousin (we’ll call him Daniel), inquired, eyes widening.

The wind suddenly knocked out of me, I deflated like a balloon in my chair at the dinner table.

He doesn’t know?

Thank God he doesn’t know!

How can my response enlighten him while maintaining his innocence, leaving him just the way he is- unscathed by diabetes?

How do I explain a disease that rocked my world by the time I was his age, while simultaneously praying that he never truly has to understand?

My grandmother had been describing a friend who was exhibiting the telltale symptoms of diabetes onset- extreme thirst and sudden weight loss.  Despite being familiar with the disease, my grandmother had not jumped to the diabetes conclusion.  Her friend was older and type 1 diabetes was not on the radar.  Thankfully, her friend was diagnosed and received proper treatment.  One drop of blood was tested in time.

As we lamented the lack of awareness of the warning signs of diabetes, I noticed Daniel’s focus shifting to us.  He fidgeted in his chair, the wheels spinning in his head.

Do I drink a lot?  Do I pee a lot?, he wondered.

Then: “Wait, what’s diabetes again?”

I took a deep breath and blinked back tears, buying some time to regain my composure.

“See this roll on my plate?  When you eat this roll, something called insulin helps you to process the food and receive energy from it.  I have diabetes.  So my body does not make insulin to cover the food that I eat.  I take shots of insulin to stay healthy,” I replied, except there were many more “umms” and much less eloquence in that moment.

Daniel looked directly at me and nodded.

“Oh, okay,” he said, satisfied with my explanation.

And with that he took off, dancing around the living room with the other cousins, back to more pleasant daydreams of race cars and Legos in place of insulin syringes and frequent urination.

Back to the way it should be.

We need a cure.

 

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

If I were to fit the stereotype of a self-absorbed Millennial, I shouldn’t give an albino squirrel’s @$$ that UnitedHealthcare will solely cover Medtronic insulin pumps in the near future.

^ Albino squirrel spotted in Washington, DC.  He told me that a laboratory cured him of diabetes!

 

Well, albino squirrels are real, and so is this Millennial.

I do care.

My insurance provider is not UnitedHealthcare.  I walked away from my Medtronic insulin pump over a year ago.  Currently, I manage my type 1 diabetes using Lantus and Humalog insulin pens, the traditionalist method of being certain that insulin is getting into my body.  My stomach bears the bruises to prove it.

Disappointment still lingers when I think about the divorce from my Medtronic insulin pump.  I identified an infusion set defect, and spiked high ketones with every site change.  I pleaded with Medtronic to help, to find an alternative solution, to listen and to trust me.  For awhile, they did.  But then the problems kept happening, and I kept emailing, and they finally chose to stop responding.

They walked away.  If only I could abandon my type 1 diabetes so easily…

I have been vocal about my insulin pump tribulations, but I have always given Medtronic the benefit of the doubt at the end of the day.  My situation was a rarity; most people have good hearts; the manager who did not respond to my emails was told to do so by higher-ups who feared a lawsuit; she went home at night and felt a twinge of guilt, wondering if I was still sick with ketones from my failed pump sites.

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

When I first saw the headlines about UHC and MDT teaming up, I was frustrated but not surprised.  Finally, people were seeing the light.  Rather, the darkness.

Our healthcare system involves give and take, tug-of-war with patients’ quality of life and companies’ profits at stake.  Although the Affordable Care Act gave us coverage for pre-existing conditions, the ability to stay on our parents’ plans until age 26, and supposedly lower costs, the reality is that in order to receive, we also have to give.  To cut costs in one place, costs have to shift somewhere else.

Medtronic and UnitedHealthcare are not the only companies out there striving to make a profit in a newly-designed medical playing field.  Perhaps their business arrangement was intelligent for their own financial reasons.  Public relations-wise, not so much.  Only time will tell the true breadth of this so-called deal.

As we over-emphasize cost-cutting, we must be careful not to also snip choice and patient autonomy.  Reducing costs sounds great in the short-term, but we cannot disregard the long-term.  If patients’ health is compromised by inadequate access to resources, all the costs that insurance companies may have saved upfront will later be seen in hospital bills and subsequent treatment.

Under my current insurance plan, a preferred provider organization (PPO), I can go out-of-network if I so choose and if I have the capability to pay more for that care.  There are times where I believe wholeheartedly that an out-of-network provider is the absolute best shot at achieving better health.  That is my prerogative, and, understandably, my financial situation to figure out.  While the pricing may not be pleasant, what is most important to me is that I am able to access that care.  If high-quality care means sacrificing my own money for a vacation or a fancy new car, that is my choice.  If my financial situation changes later on, perhaps I will have to reassess and fall back to an in-network provider.  Yet such ability to choose should never be limited by the government or by insurance providers.

Collusion of insulin pump coverage is concerning not only for the diabetes community, but for healthcare at large.  Imagine the ramifications of collusion in multiple disease categories, of various insurers, corporations, and pharmaceutical companies.  Sure, big business is big business, but ethics should be ethics, too.

Notably, in “socialized healthcare” situations all over the globe, we must concede how much give-and-take is occurring.  Patients may have to wait months to be seen by a provider, and that provider may be mediocre.  Such is the sacrifice for limiting the free market.  On the flip side, we have gargantuan healthcare costs here in the U.S. because we roll the dice on access and affordability of treatment in the name of corporate greed.  If the grass is apparently always greener, well, it looks pretty yellow from my point of view, no matter how or where you slice healthcare financing.

Next weekend I will walk at my Commencement ceremony, having completed my Master of Science in Healthcare Administration and Management degree in December of 2015.  The UHC/MDT situation reminds me of a moment in our Public Health course.  As our Professor detailed how “money talks” in medicine, a longtime nurse in the class shook her head, visibly horrified.

“Is that really how this all works?  People don’t simply want to help others who are hurting?” she asked, bewildered.

She was like the little kid learning that Santa is not real, her innocence suddenly dissipating before our eyes.

The reality of healthcare is that money does talk.  Yet, like my classmate, we have to keep the hope alive in our hearts that some of us good eggs are in it for the long haul, for improving lives and fostering genuine human connection in the process.  Medtronic and UHC have called such goodhearted concepts into question, which is why we are now experiencing #AllOfTheFeelings.

Circling back to my personal, weird insulin pump scenario: The things that kept me afloat during such dire straits were my compassionate healthcare team, and the ability to choose.  When my Medtronic pump was no longer a good fit for me, some semblance of hope remained.  I could always sidestep over to a different insulin pump brand, for example.  Or, I could return to multiple daily injections, which I ultimately decided to do.  My doctors and nurses listened to me; they trusted my judgment as an informed, engaged patient; and they lifted me up on the days when it all seemed too heavy a cross to carry on my own.

Not one second of that ordeal was easy.  But we did it, somehow.

My advice to those overwhelmed by anxiety about access to health technology in light of the UHC/MDT deal is that you will survive somehow, too.  It may not be enjoyable.  It royally sucks that such a violation of your trust as a consumer has occurred, and that your freedom of choice has been stripped away.  It is morally reprehensible that this is happening under the guise of expanding innovation; limitation of choice, in fact, stifles creativity at all levels.  You have a right to be angry as hell.  Lean on each other liberally.  Remember that there are people overseas, or even in our own backyards, who do not have access to insulin.  Our voices must lift them up, too.

Hard times boil down to the good eggs and the bad, the people who answer emails filled with desperation and suffering, the companies which accept responsibility and troubleshoot the issues, the patients who never stop advocating no matter how sick they feel, and the medical teams which have their backs.

Healthcare is a complicated equation.  But we are on the right side.

We are the people who care.

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

 

 

 

The Cloak of Diabetes

Diabetes has a knack for eliciting the barter games, those if/then compromises we make with ourselves, with God, with anyone who will listen.  Parents wish to switch places with their diabetic children, to endure all of the needles in their places.  Authors like Gail Caldwell document the phenomenon: “It broke through my disbelief, my God bartering, my every other defense, and for this reason I both needed and hated to go there.”

When it comes to diabetes, I’m not sure I want another person to go there, either.

During #IWishPeopleKnewThatDiabetes day, organized by the lovely Kelly Kunik, I tweeted:

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Diabetes is not all misery and sorrow, but let’s be honest: It would be amazing to wake up each morning and not have to prick our fingers, perform Calculus to determine a breakfast dose of insulin, rein in the effects of that insulin if it is inadvertently too much or too little, push back against misinformed stereotypes of the disease, and think about this stuff frequently as we lead the rest of our busy lives.

Frankly, diabetes is not “fun” enough for me to want to pawn it off on anybody else in good conscience.  This is why #weneedacure for future generations.  It is also why I invented the cloak of diabetes which hangs in the hall closet of my mind.

The cloak of diabetes is a way to explain that I want empathy with no strings attached- no harm, no foul.  Empathy does not mean that my doctors or friends have to live 25 years of diabetes to know exactly what it feels like to me.  Ideally, empathy means that they “get it” without having “it.”  They do not need to have diabetes to understand how frustrating being awake all night checking blood sugars is; they can trust when I tell them that the level of exhaustion is off the charts when that happens.  They can realize that sometimes saying the right thing means saying nothing; sitting with me in those moments is enough.

Even if diabetes is mostly manageable in the midst of living a full life, there are still the bad days where it hurts like hell.  I do not want my family, friends, or doctors to hear the words “chronicity” or “no known cure” and to imagine that their diabetes sentences are lifelong.

Hence, the cloak of diabetes.  They could throw on the cloak and briefly experience the grumpiness associated with high blood sugar, or going to bed hungry but unable to eat.  The shakiness in their hands of a bad hypoglycemic episode would be an acute incident, resolving when the cloak of diabetes is returned to the coat check.  The anxiety of the “what ifs” would dissipate when their lab work came back normal.

They could “get it” regarding diabetes, without actually having “it.”  They could empathize while having a better picture of what diabetes physically and mentally feels like.

But then it would go away.  Diabetes is not something that I want them to know intimately.  A little bit is enough.  So, I go back to the God-bartering games.

If I have to have diabetes, please don’t let them have to have it, too.  Allow me to be accepting of their support. 

Can I hang up Your cloak?  The weather looks nice today.