5

Very Light, No Sugar recently celebrated its fifth blogoversary.  I am forever grateful for the people in 109 countries(!!!) around the globe who have visited here.

A lot has changed since I ventured out into the healthcare advocacy realm 5 years ago.  Having been diagnosed with type 1 diabetes (T1D) just before my third birthday, advocating has always been in my blood, literally and figuratively.  I still believe that #weneedacure.  And I still believe that all people with diabetes, or any other health condition, deserve dignity through accessible, affordable, high-quality care.

I marked my fifth blog anniversary by waking up in a stupor, thanks to skunked, expired insulin contributing to high ketones.  “I’m so over all of this,” I lamented through a series of tweet-and-deletes.  The irony was not lost on me.  Diabetes waxes and wanes and manifests over a spectrum.  At the heart of it all is a human being simply wanting to improve quality of life (QoL), to be in the green on those numbers charts, in the “doing well” category.

If I am being totally honest, although I look back and cringe at some of the early, corny blog posts, I am jealous of that former author, that version of me.  She had so much innocent hope in the future, in the good capabilities of healthcare.  Perhaps time in the trenches has jaded me over time.  I have seen the good, the bad, and the ugly in healthcare advocacy.   I still believe in the good.  But I have removed my privilege blinders to be more realistic about the various barriers to care.

Personally, I have survived a lot that I never anticipated, and I did so very publicly.  Sometimes I wish I could crawl back under my rock, and do the whole survival thing quietly and humbly.  But there is another part of me that is committed to keeping it real, to voicing the raw truths even when it is painful to do so.

There are so many good eggs in diabetes-land, many of whom I have enjoyed collaborating with or sharing a coffee / beer in person at various events.  Others are Twitter friends, known by their creative @ handles.

The longer I am a piece of this diabetes online community fabric, though, the more I notice the glaring discrepancies between the Haves and the Have Nots.  I acknowledge my own great privilege due to graduate education and job, while still recognizing that diabetes is pretty damn difficult no matter what.  I cannot fully understand the plight of those with less than me, nor do I purport that I represent all of them.  But, I do have legitimate concerns for our future.

How can we help The Whole in diabetes if we do not lift up all voices?  We celebrate amazing tech innovation for some, while others die painfully of ketoacidosis, their breathing labored, because insulin is not readily available through no fault of their own.  I look at all of this and wonder where I fit.  Have I assumed the role I was supposed to play?  Have my interests moved on to mental health?  Do my interests need to be separate and distinct? (Heck no).

In the words of my favorite poet, Andrea Gibson, “It hurts to become.”  I have done a lot of becoming over these past 5 years.  And, as a community, we all have become, too.  We have more to do.  More voices to hear.  More time to listen.  More lives to save.

I do not know where the next 5 years will lead.  Lately, I have been focusing on the here and now.

Thank you for letting me be here, with you, riding the wave while it lasts.

Much love, always.

Ally

 

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“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.

Good Eggs Versus Goliath

???

I’m asking the same darn question. What in the actual Swear Word is going on?!

Let’s get the disclaimers out of the way upfront:

I am, undoubtedly, one of the lucky ones when it comes to health insurance. We can have the debate over whether or not Dexcom is a necessity or a privilege some other time. If I was stranded on an island, obviously insulin would be priority number one. But outside of being stranded on an island, Dexcom is a tool that keeps me safe. Because I value the high-quality product provided by the most innovative company on the market, I chose to fight for my supplies recently.   

Yes, I am a minnow in the healthcare pond. Society is filled with bigger fish who only see $$$, not the frustration of minnows who see ??? on their Dexcom screens. But does that mean that I have to lose hope in humanity? Nope. There will always be good eggs fighting against Goliath, and I want to give everyone that benefit of the doubt. When I lay my head down on the pillow at night, I want to know that despite whatever diabetes-related concerns I may harbor, I still tried. Hence, this blog post.

We all deserve better in healthcare. Step 1 is openly talking about it.

Long-story-that-has-been-rehashed-far-too-many-times-on-Twitter-short:

My Dexcom transmitter alerted me to its quick decline a few weeks ago. I immediately placed all of the appropriate phone calls to Dexcom and my third party supplier, Neighborhood Diabetes, as well as emailed my endo clinic. Unfortunately, we all go through these healthcare loop-de-loop headaches from time to time; I am well-aware that this problem occurs to others, too, and I am just as livid about their interruptions in quality of life as I am about my own. What was different for me this time around was how unnecessarily drawn out, draining, and dehumanizing this war with Goliath was.

low transmitter battery

How many steps does it take to receive a diabetes supply in 2016, you might ask?

  • 15 phone calls to third party suppliers, endocrinology clinics, and Dexcom customer service
  • 13 emails to various providers
  • 2 voicemails from third party supplier
  • Hitting “refresh” on the USPS tracking website a pathetic number of times
  • Gazillions of Twitter vent sessions
  • Countless hours of interrupted workdays during these phone calls/wait times
  • 1 box of Puffs Plus to dry your tears of frustration
  • 4 trips to your apartment’s leasing office mailroom
  • 2 awkward encounters with the mailman as you stalked his delivery route
  • 2 weeks of remembering what it was like to sleep pre-Dexcom

-Hint: I won’t take Dexcom for granted again, although I am in a tech- detox until this weekend because, frankly, I need a mini-vacation after this ordeal.

-Notably, all of this is for ONE supply out of thousands needed in our diabetes lifetimes!!!

 

There are also elements which we cannot objectify so easily:

  • Anger that our supposedly new and improved healthcare system remains SO disjointed
  • Extreme guilt that this is a first world, continuous glucose monitor problem when so many in our own backyards and overseas struggle to obtain the basics required to live with diabetes

-If being “angry that you are angry” is a thing, it was definitely my thing this week.

  • Which leads to more anger and self-doubt: Am I handling this well? Am I dramatic?

-Repeat that cyclical conversation in your brain a billion times over.

-Still feel guilty, as if YOU did something wrong here.

-Recognize that ^ is what abusers do to their victims; they twist the responsibility. Acknowledge that healthcare can be a big bully, and that no one deserves this.

-Realize that no, this situation is ludicrous. But yes, you are still blessed compared to others that you have what you do.

  • Demoralization that you have to beg and beg and beg to be heard. That you have to explain, on every call, why this product is important. That once again you are at the mercy of something beyond your control, and diabetes has a hand in that just like it did during that horrific low on your middle school field trip so many years ago.  Use incomplete sentences to express how off-putting this is.
  • Brokenhearted that this will likely happen many times over because #weneedacure that is realistically still far away.
  • Misunderstood: How can we possibly articulate how. much. time. we spend battling for supplies in order to survive?
  • What about how little time that leaves to actually live?

 

Understandably, Dexcom is going through some growing pains due to chart-topping progress recently. Their call center is overworked. I’ll admit all biases here: I like Dexcom a lot, and I cut them some slack here because I have faith that they will rein in this situation soon. All of that aside, though, waiting one or two hours to reach a representative is not anyone’s idea of a good time.

Dexcom did call me back and apologize, a feat that earns them more brownie points in my book. We live in a society that is quick to criticize and slow to forgive. Knowing this, Dexcom still took accountability for the things that went awry, which allows me to trust in their company character.

Then there was my supplier, Neighborhood Diabetes, which has historically answered phone calls at rapid-fire pace, winning my admiration. Initially, they performed in their usual customer-centric manner, getting the ball rolling on my new Dexcom order.

My endo clinic needed to dot some i’s and cross some t’s for insurance. But their email system is sporadically down, to the point where patients and providers alike cannot communicate effectively. A few phone calls later and I was reassured that their part of the deal had occurred.

So, I called Neighborhood Diabetes back, prompting my order to ship out before last weekend.

Cool, except that order never shipped out due to a “glitch,” which was discovered during my repeated “What the heck?!!!” phone calls. Transparency goes a long way, and I am happy that one of ND’s representatives was honest with me about the issue. Yet I couldn’t help but envision my islet cells doubling over in laughter as they recalled that time 25 years ago when they had a little “glitch,” too.

Two weeks after this fiasco began, even the mailman was happy when delivery day arrived. I could not help but be reminded of the good eggs in the world as I found his smiley face emoji note, and the subsequent Neighborhood Diabetes package in the box to the left, to the left. 🙂

mailman note

Neighborhood Diabetes box

As diabetics, we have to be on our A-game every day. Our lives depend on it. Our family and friends rely on it because they do not want to prematurely lose us. We are all human and we all mess up from time to time. But we do not get the luxury of inefficient or ineffective practices. We do not get to have “glitches” or one-hour hold times at the call centers of our own bodies whenever we want a break from diabetes.

Lantus

There were many moments over the past few weeks where I longed to mimic Kristin Cavallari’s famous Laguna Beach line, “My car is dunzo!”, except I would have replaced “car” with “pancreas” or “emotional stability.” Honestly, this whole situation broke me more than a scary low blood sugar ever could. It made me question my strength in handling all of this, but I also discovered one very clear truth:

In healthcare, there are good eggs and there is the Goliath of the broken system. Although an egg’s hard exterior may crack under pressure, the goodness inside is what matters when all is said and done.  Be one of the good eggs.

 

 

Healthcare loop-de-loop

This blog post serves as a simplified example of the complex headache that is the “healthcare loop-de-loop.”  Ironically, I pledged to write about this topic last year as an offshoot of a blog about diabetes needles.  Today, I again blog about diabetes needles, and how many hoops we must jump through to obtain minimal elements of surviving diabetes.

Many have it more difficult than me, their basic health needs unmet.  Frankly, I have somewhat decent healthcare coverage through my employer, and I have also studied healthcare at the graduate level and understand its nuances.  My point being: Despite all of this, healthcare remains an untamed beast, from the lower administrative levels all the way up.  If I have it “good” and experience this, what about all of those slipping through the cracks merely due to circumstance?

The healthcare loop-de-loop reemerged last week when I went to refill an insulin pen tip prescription, which was promptly denied by my insurer.  (I use two different types of insulin pen tips- the 4 mm BD tips for Lantus and the 8 mm tips for Humalog.  My doctor and I found that the smaller Humalog volume was not being absorbed by my body with the 4 mm tips, so we begrudgingly opted for the larger 8 mm’s.  Your diabetes may vary.)

Allow me to further explain, via Twitter rant:

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^ Because of the confusion about the needle length sizes and what had previously been refilled/what needed to be refilled currently, insurance flagged the new prescription as something to deny.  In reality, it was simply a new prescription for a different needle length, granted by my doctor to alleviate some pain from multiple daily injections.

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^ I cannot make lengthy phone calls at my job because my job duties would be compromised.  And I need to work for reasons of insurance and paying healthcare bills.  Many of us are in the same boat here.

^^ “This probably should’ve been a blog.”  …Yup, now it is.

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^ As maddening as this phone call marathon was, Spare a Rose puts it all in perspective.  Although our healthcare situation is far from ideal in the United States, we are blessed to have what coverage we do have.

 

At first I felt dramatic for live-tweeting my everyday diabetes grievances.  Later, I was pleasantly surprised by how many people validated my feelings, unfortunately having experienced similar irritations of their own.

The resounding theme was: This isn’t right.  Whatsoever.  Amen.

Healthcare is a complicated, multidimensional goliath.  I just so happen to love learning about it.  But when healthcare bites back at me, it is a reminder that I am still a little coffee cup in a big sea of healthcare coffee beans.  Socioeconomic status, insurance coverage, and corporate power are just a few of those beans playing in the healthcare game.  The stakes are high: Quality of health, and, therefore, quality of life, are on the table.

I recognize that my tiny roar may not jostle healthcare mountains.  Currently, there is too much bureaucracy and red tape to allow many of my suggestions to move forward.  But in order to do my part rather than sit back and complain behind the shield of my laptop screen, I must recommend some changes.  If they are heard outside of the confines of my own mind, then it is worth expressing them.

I will start small, with the insulin pen tip example:

“Hi, my name is Ally.  I have been type one diabetic for 25 years.  One day I am confident that there will be a diabetes cure.  We always keep that faith alive.

However, that cure is realistically still far away.  In the meantime, I will require insulin every day in order to survive.  This insulin should be affordable and accessible.  Anything less is morally reprehensible.  The same logic goes for any other life-sustaining medication for any other serious illness.  We can and we must do better.

If a type 1 diabetic is not using an insulin pump, he or she requires insulin syringes or insulin pens (glorified insulin syringes for ease of user experience).  Insulin will be delivered into the body through a needle at the end of the syringe or insulin pen.

Because I require insulin to live, and because I use injections rather than an insulin pump to manage my blood sugar, my skin must be pierced by needles every day until I am cured.  Insurance could make this more bearable by not causing obviously-necessary prescription refills to be a royal pain in the @$$.

The Endo clinic could edit their coding system, so that pen tips can be ordered by millimeters, rather than gauge.  No one likes to say, “Can I refill this 0.99784567325 X 54321 infinity pen tip needle, please?”  Just say 4 mm in your system.  Thumbs up emoji.

Kindhearted pharmacist who empathized with my worries over the insurance-endocrinology clinic ping pong battle deserves a coffee on my dime.  So does insurance representative who patiently worked through the mix-up in order to get my supplies.

Understandably, BD does not want to market their insulin pen tips as “8 mm LARGE, will leave giant bruises; 5 mm semi-large, still may bruise; or 4 mm, smaller but you’re still jabbing yourself with a needle!!”.  However, calling the pen tips “Short (8 mm), Mini (5 mm), and Nano (4 mm)” all indicate “small” in the minds of patients, providers, insurers, and pharmacists.  You can see the root of the miscommunication.

Below is a color-coded chart, created by yours truly, for future reference.  Feel free to disseminate to all parties involved here.  It will lessen monthly Advil bills.

BLUE = 8 mm   “Long needle.  Only intended for use by badasses.”  Lamely called “Short” in real life.


PURPLE = 5 mm  “Medium-length needle.  Sassy.”  Lamely called “Mini” in real life.

GREEN = 4 mm  “Small.  Dainty needle for dainty pain.”  Lamely called “Nano” in real life.

ALLY = happy that you listened

Happy Ally

Thanks for hearing me out.  Until the next prescription refill…

XOXO,

Ally”

 

 

 

 

 

 

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare.  If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket  (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

 

*****-And oh, yeah, A LIFE!!!!!!!!

 

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours.  We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been.  We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress.  Scary, yes.  Life-threatening, sometimes.  But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately.  Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that.  We understand diabetic ketoacidosis.  We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take.  If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it.  These kids are more than uncomfortable as they await insulin that they should have to begin with.  We owe it to them to do the right thing.

If you can, please spare a rose this February.  Through the simple act of sparing, we can dry so many tears.

Thank you

spare a rose 2015

 

 

 

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.

thought bubble3

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

thought bubble2

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!

Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did.  She got really sick.  I don’t think she had to take shots like you.  But the doctors said she died of diabetes.”

“People don’t die from diabetes.  It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before.  I knew low blood sugar left me pale and shaking on the floor.  But did people actually die from this stuff?  I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly.  Why had he said it if it wasn’t true, though? 

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.