10 January 2012

In the Absence of Pressure, A Conscious Choice

In the slightly more than ten months since my youngest cub landed in Children's ICU in diabetic ketoacidosis, she's endured almost constant pressure to use a pump for insulin delivery. The pressure to make a choice, whether well intentioned, born of a lack of understanding, or out of true belief that one choice proves better than another, creates an insidious resistance to choose the suggested path. I cringe at the memory of school personnel insisting that she change soon, or would indeed change sooner or later, to an insulin pump. Quite frankly, metered dose insulin (MDI) works just as well, and for some type 1 diabetics, better than insulin pump therapy. Even I developed an aversion to switching to a pump in the face of such incredible pressure from those who barely understand what living with this disease entails for either myself as a parent of a child with diabetes, my daughter who was diagnosed last February, or the rest of the family.

We often joke about the struggle to maintain some semblance of balance between normal life and life with diabetes. Since the day of her diagnosis, my ever awe inspiring daughter insisted that she does not have a disease or an illness, she has diabetes and her life will not revolve around that condition. As we round the bend toward her first diaversary, I look back over these last ten months and marvel at the maturity and common sense exhibited by both of my 'at home' children in response to Diabetes. Without hesitation or reticence, N has embraced and taken responsibility for large amounts of her care and management, and led life as normally as possible, proving to all that life with diabetes need not be more than simply life - on the outside. Brother Cub routinely asks to join us on our quarterly visits to the endocrine center, learns all he can about counting carbs, administering insulin, and just what his sister acts like when low. He's displayed amazing sensitivity at times we need to step in and direct her towards a timely blood sugar check, and volunteered to give shots when even their eldest sis balks at the idea. (Her time will come.)

Underneath this sea of calm and inspired acceptance of this life altering illness lies the ugly underbelly of the disease. The sleepless nights filled with hypoglycemic events requiring vast quantities of nearly pure sugar needed to avoid the death of much needed neurons. The ever present fear that one or both of us just might sleep through these terrifying events. The brief moments of sheer, unadulterated misery over a high reading or the inability to eat something right now when the hunger pangs strike rather than in a few hours when it's once again safe to administer the dangerous but life saving medication, insulin. I believe I've amassed less sleep these past months than I did in the first ten months of her life, and the sleep deprived version of me pales in comparison (and compassion) to the well rested.

Slowly over the wintry season, devoid of swimming and after school athletics, her readings crept upward, insulin needs rose, and night time lows worsened. We've battled illness with Diabetes, a beast of an entirely different and unpleasant nature, injuries, and unwanted ketones. Despite embracing and reveling in healthy eating, not much different from our diet pre-diagnosis, but more consistent in appearance, the holidays brought cravings for the sweet celebrations of years passed. We chose wisely, making few of the favorites, and enjoyed them in moderation, but still the resulting blood sugar swings tested our collective patience.

More stress inducing than anything, the struggles with insurance push us well beyond our limit. Imagine the inability to receive a simple vial of test strips the days prior to Christmas. Without these she cannot test, and without testing, we cannot determine the correct amount of insulin to administer. Without insulin, she cannot eat... but from the state we received nary a response, until finally we paid out of pocket. 50 tiny strips designed to collect and analyze a teeny droplet of blood, twelve times a day. Just enough to last us 4 days, provided none came up faulty. Provided we needed no extra tests to rule out and treat a low or high. 4 days at the cost of $65, an infinitesimally small but necessary component of her care, and the insurance company could not be bothered to respond. Of course, those four days covered Christmas - a major holiday filled with anticipation, joy, and excitement. The sort of day designed to create wide fluctuations in blood sugar requiring more frequent testing. We made it through, just barely, thanks to the cancellation of a gift apiece for our children, and the ability to purchase much needed strips with said gift money. At another time of year, we might not have been so fortunate.

That event prompted the appearance of an enormous, dark weight in the pit of my stomach. One that grows heavier if I indulge the fear from which it derives life. A weight that moves ever higher, and threatens to choke me with thoughts I dare not mention out loud. What if I can't afford her care? What if we can't get the medications she needs? What if... and I shut it down lest it take over. I cannot, will not, allow those fears to take over, or for that eventuality to manifest. Clearly, the insurance industry fails to share my sentiments, feels no compunction to prevent such a horrific outcome.

In the face of continuing nocturnal hypoglycemia, lost sleep, and increasing numbers of shots, the pump word began to slowly circulate our household, and along with it CGM. (Continuous glucose monitor, a device that reads her blood sugar level every five minutes, and alarms when too high or too low.) Away from the pressure of friends and school administrators, those who previously pushed her toward an unmovable opposition to the pump, the idea took root. We barely whispered a word of these thoughts at first, kept them well hidden, those first few uncertain days, until finally we reached the morning of her next appointment.

The question arose as an aside. What about a pump? Does it really lead to more highs? So hesitantly, nearly non committal in the roundabout inquiry, but I knew what it meant. By day's end, she'd chosen which pump, and formed a plan to acquire it. N emailed the PA, asserted her choice as without hesitation and firm, provided well thought out reasons and arguments for not just pumping, but also a CGM. And the PA, strongly encouraging further thought and discussion, acquiesced in the face of such honest, heart felt, and well reasoned arguments. Within a day, I heard from the pump manufacturer. Hours later, the center called to schedule the pump prep class. Given the freedom and space to arrive at her own decision of what treatment options offer the best care for her at this moment, she made a decision to try pump therapy.

My nerves quiver at the learning curve ahead. I hold no doubt that we will manage, even master, this new approach to diabetes. That said, I understand that bumps and challenges lie ahead. The first, once again the insurance company and the seemingly endless block to what at first seemed like a fast moving transition in action. We wait, perched on top of the roller coaster ride, awaiting the swift, break necked pace down into, through, and up the curve of learning to pump and CGM simultaneously. Of course, the insurance company holds the lever to the brake in its hands, and in the interim I once again stack numerous sleepless nights against the promise of a more sleep filled future. It seems that N dare not breathe lest the winds of her bated breath change the tides of this important decision. In the absence of pressure, she made a conscious choice, and now, the insurance company holds the fate of its realization at bay.

Welcome to life with diabetes, where hurry up and wait takes on entirely new layers of meaning.

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