Naked and Not-That-Afraid

Admit it. You clicked. But I pinky-promise Very Light, No Sugar is not about clickbait. Instead, let’s have a good time with this one.

The Discovery Channel hit a homerun with its series Naked and Afraid, which drops made-for-TV couples in the middle of nowhere and challenges them to survive together with few resources. Heavy emphasis on few resources. Because oh yeah, the individuals are naked while doing all of this, their not-so-PG-features blurred out with video editing and then broadcasted all over cable television.

I’d argue living with chronic illness presents similar trials. At diagnosis time, your entire world was rocked. You were thrown into unchartered waters with a leaky inflatable raft and asked to somehow make it all work. And you did. Some days are better than others, but even on the worst of days, you’re still floating.

Picture the tabula rasa of #doc Adam and Eve in the Garden of Endocrinology. They have no shame. They have not experienced the “diabetes police,” the misinformed stereotypes, the media onslaught. They are simply there, together. And naked. Except for those button-looking health technology thingamajigs attached to their skin.

Eve may have come from Adam’s rib, but the missing aspect of the story is that she came wielding prehistoric weapons of mass destruction: CGM inserters. Hence, Adam’s rib pain. From there, they took turns replacing insulin pump infusion sets for one another, the very first example of putting the “care” in healthcare. There were no deductibles or tense waiting rooms. This was solely Adam and Eve, charting the course together.

When they found the apple, they wondered how much to bolus for the carbs.

“This looks like a McIntosh. What do you think? 15 grams?” Diabetic Eve asked, squinting at the red and green hues.

“I don’t know. That’s kind of big. Won’t Endo yell at us if we don’t get this right?” Diabetic Adam fretted.

“Don’t be a wuss, bae,” Diabetic Eve retorted.

And so they each took a bite, tossing the apple back and forth. A few minutes later, the CGM beeped, its graph entering the yellow “high” territory just in time for the dreaded Endo appointment.

*****

As I previously wrote, I received my Dexcom supplies last week after fighting for far too long to obtain them from various avenues.

The new Dexcom transmitter has been great, from what the box still holding it tells me. After all of the drama in reordering the Dexcom, I would have bet money that I’d insert a sensor and begin the 2-hour warm-up within minutes of the package delivery.

But that did not happen. I do not exactly know why, but I have some educated guesses:

I got so burnt out by the process that I wanted nothing to do with health tech once the battle was won.

This is not for lack of being thankful; I am eternally appreciative of the positive impact of diabetes technology. Instead, this is about needing a break, to not think about something that consumed my thoughts for weeks as I awaited its arrival. Considering I use insulin pens instead of an insulin pump, my body is momentarily device-free. Now I’m working on such a literal and figurative diabetes reprieve for my psyche, too.

Perhaps the tech hiatus is also a “screw you” to our ridiculous, convoluted system. The healthcare loop-de-loop may have briefly stripped me of my dignity, but this tech vacation affords me some “control” again. I have the ability to make my own decisions about my body, mind, and soul.  This is the first step in putting my anger aside to do so.

Years ago, the conversation would have played out like this:

“You’re so stupid! How can you be so ungrateful? After going through all of that to get a new Dexcom, and spending all of that money, you’re just going to let it collect dust in the corner?!! Just so, so, stupid. So selfish.”

Many conversations with compassionate friends and healthcare providers later, I know now that the people who said those harsh things to me could never handle the constant nature of diabetes if they had to live it. I can. It is not always graceful, but I do it. I’m not stupid. Or ungrateful. Or selfish.

Tired? Yes. But every new morning is a “reset button.” This time I will not be pressing the button on a tech device; this reset button is an emotional one that cannot be objectively quantified. Its name is Freedom.

Diabetes is a catch-22, a continual give-and-take, a balancing act on a tightrope that is jostled every few minutes. Sometimes we have to weigh the risks and benefits, the pressing concerns and the long-term impacts. In doing that, I recently realized that my emotional needs trump the physical safety ones provided by Dexcom, in this immediate moment.

Although I miss Dexcom alarms alerting me to problems overnight, I have to trust my own intuition again. Strip it down, back to the basics, Diabetes 101. Simplify.

I set nighttime alarm clocks and hope that now is not my time to go via an unshakeable low blood sugar in my sleep. And if it is my time to go, well, that’s mostly in God’s hands, anyway. My gut tells me that a Dexcom break for a few weeks will do more good than bad, so I’m running with that idea. I am trusting in Him, and trusting in me.

When I am ready, I will definitively return to CGM. Without Dexcom, I find myself looking back at my apartment whenever I climb into my car, sensing that I left something behind, like I am reaching for a familiar hand that suddenly is not there. I miss slipping into Dexcom’s added diabetes security blanket like it is a favorite pair of boots, the perfect fit.

For now, though, I am going to enjoy the little things again: the long, hot showers; the consumption of McIntosh apples with old-fashioned carb-counting and blood sugar checking a few hours later; the silence of a room devoid of vibrating tech devices; what it feels like to be Ally in her own skin- skin that is entirely her own real estate right now.

Like Diabetic Adam and Eve, I am naked and trying my best to remain strong, and good.

I am naked and not-that-afraid.

 

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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.

 

 

Sleuthing

This week I exhaled and sent an email to my doctor, the opening line reading, “Today was so hard.”

It is unlike me to show that much vulnerability upfront, but I was exhausted. And, if I am being totally honest, the past few months have been so hard.

Please trust me that this is more than the typical “diabetes rollercoaster” term used to describe the highs and the lows inherent to living with diabetes. Heck, it has been the diabetes “Tower of Terror.” Blood sugars were thrown into the spiraling abyss of lows in early 2016, only to ricochet back up into the stratosphere, seemingly unscathed by my defensive insulin jousts this spring.

For most of my life, I have known this truth: There is a “great unknown” affecting my diabetes. As a young child, I would be fine one minute, building couch cushion forts with my siblings, and the next minute I would be covered head-to-toe in a rash.

I recall being about eight years old and lifting my shirt to see large, circular patterns of hives all over my abdomen. My limited reference point at that time was the worst case scenario discussed in Catholic grammar school. This was clearly modern day leprosy in a suburb north of Boston! I tipped my head back and screamed at the top of my lungs.

Mom reassured me that although hives are unpleasant, I was not dying. This outbreak was no match for an Aveeno oatmeal bath. Do they still sell that stuff?! Magic!

I developed blistering rashes on my hands and fingers, an itchy-then-painful contact reaction. Contact with what? We still do not know. Anything and everything could be the trigger. As an adult, this occurs less frequently, but still happens from time to time.

There are other vague symptoms much like those described in this articulate New Yorker piece: low-grade fevers, allergies, stuffy nose, scratchy throat- that general sense of feeling run down but not sure exactly what is wrong. All of these factors send my blood sugar (and ketones) soaring, due to the obvious biological response to inflammation/bodily threats.

While you may be reading this and thinking, “So what?,” I assure you that I have spent years asking the same. In acute instances, this stuff seems trivial. But long-term, the sum of the symptoms is messing with my overall health. I have worked so hard to rewrite my diabetes management with multiple daily injections, to push the limits of my anxiety and to experience more freedom as a result, and to play by the diabetes “rules”.  Therefore, I will not allow this undefined immuno-gobbledygook to strip me of my health and dignity.

Because no doctor has time in a half hour appointment slot to put all of these puzzle pieces together, the puzzle has laid strewn across the table, unfinished, for decades now. Perhaps it is seeing the CGM graphs with more yellow (“high”) than I would like to publicly admit, perhaps it is the struggle to get through adult responsibilities each day when feeling like a fatigued zombie, or perhaps now is simply the right time.

Whatever it is, I am ready to connect the dots, with the help of a qualified healthcare team. We will become the Sleuths of 2016, our magnifying glasses polished to uncover clues along the way. Inspector Gadget and Harriet the Spy will have nothing on Boston physicians- I guarantee it!

In a few weeks, I will attend my first appointment with a renowned immunologist at a Boston hospital. The receptionist forewarned me that an allergy scratch test is imminent, and friends in the autoimmune world recounted lots of blood draws. Although my symptoms may not meet a diagnosis standard, they still exist. While my hope is that the doctor’s investigatory work rule outs any major problem, I also fear not having a real answer. Actually, I mostly fear not having a course of action.

Best case scenario: It’s not modern day leprosy, I’ll live, and this is how we’re going to treat this immuno-gobbledygook so that it no longer wreaks havoc on my blood sugar. The End. Happily ever after. Puzzle fully pieced together into a picturesque Thomas Kinkade image.

Then I will send my doctor an email, the opening line reading: “Today was so good!”