Quick note: This week (May 16-20, 2016), GraceMark Musings is participating in Diabetes Blog Week, adding our voice to the chorus of diabetes bloggers, caregivers, and friends of the DOC (diabetes online community) who are uniting to share their unique reflections on certain topics prevalent in life with diabetes. Thank you to Karen Graffeo at Bitter-Sweet for creating this opportunity--congratulations on the 7th year of D-Blog Week!
Living with chronic illness turns you into a professional patient. You become skilled at navigating the landscape of medical care; knowing the best time of day to call each of your providers' offices, who you need to speak to in order to get what you need, the language you need to use to get coverage from your insurance company, and how to save even a penny off of your medications and supplies. You don't begin to seek these skills. You get thrust into one situation after another. Then, one day, you realize you have this knowledge and your healthcare experience is never quite the same. Your eyes are wide open and it is easy to become jaded. Dealing with all of this newfound knowledge and putting it to work quickly reveals that you are not just a professional patient (a full-time job with no pay, I might add), but also a patient, perpetually interrupted from everyday life.
Living with diabetes means you face challenges multiple times in a single day or night, but it also means that you quickly learn how to fight back (and win). This applies to hiccups in your own self-management, but also in the way the world of medicine works. A while back, I read about the concept of minimally disruptive medicine (MDM). The concept of minimally disruptive medicine (MDM) serves to "advance patient goals for health, health care, and life, using effective care programs designed and implemented in a manner that respects the the capacity of patients and caregivers and minimizes the burden of treatment-the healthcare footprint- the care program imposes on their lives" (Mayo Clinic Knowledge Education Research [KER] Unit). My hope is that, one day soon, healthcare providers involved in diabetes care will embrace the idea of MDM, with an emphasis of maximum health and overall well-being in sync with minimal burden and effect on quality of life.
Instead of beating a dead horse (by re-emphasizing how difficult and disheartening navigating the healthcare space can be), I'm just going to paint a word-picture of what a single day of experiencing healthcare as a diabetic/PWD can look like:
This is your day.
Wake up. Eat breakfast. Drive to work. Attend meetings/take calls/submit product. Eat lunch. Meet deadlines. Leave work. Head to yoga/cycle/gym. Go home. Eat dinner. Shower. Answer emails. Wind down. Go to bed.
This is your day with type 1 diabetes.
Wake up. Check blood sugar. Count carbs. Give insulin. Eat breakfast. Check CGM (continuous glucose monitor) before driving. Get to work. Attend meetings/take calls/submit product. Eat a mid-meeting snack to fend off low blood glucose (try not to distract/attract extra attention from alarms/blood testing/food). Check blood sugar. Count carbs. Give insulin. Eat lunch. Meet deadlines. Correct a delayed rebound high. Work an hour later than colleagues to get done the items that were interrupted earlier. Check CGM before driving. Head to yoga/cycle/gym (with supplies and emergency ID in tow). Check blood sugar before activity. Leave yoga/cycle/gym early due to sudden drop in blood glucose due to aerobic exercise. Treat low blood glucose (there goes the calorie burn). Wait until safe to drive. Go home. Check blood sugar. Give insulin. Eat dinner. Shower. Change pump site/CGM sensor site. Check site efficacy/calibrate sensor. Gather insurance information to make calls during office hours tomorrow. Refill supplies. Check blood sugar. Go to bed. Wake up to address high/low blood glucose during the night. Go back to sleep.
Whew. What a day, right? Good thing today wasn't also the day you needed to:
-Set an appointment with your internist/endocrinologist/ophthalmologist/diabetes educator
-Attend an appointment with your internist/endocrinologist/ophthalmologist/diabetes educator
-Pick up prescriptions at the pharmacy (and deal with the inevitable errors that occur when the staff is unfamiliar with T1D/your insurance company decides to pull a fast one)
-Get lab work done
-Order device refills (pump and CGM supplies, accoutrements)
-Appeal an insurance decision
-Pay medical bills
...or any of the other time-consuming tasks that may come up at any given time, in addition to the daily diabetes and non-diabetes related care and keeping of you. It can seem like a lot to take on, whether you are the parent/caregiver of a PWD (person with diabetes) or you are the PWD. The burden of chronic illness can be measured in dollars and lab results, but the quality of life changes it brings are difficult to quantify (although there have been studies published that associate increased risk of anxiety and/or depression with patients living with diabetes, as opposed to the general population).
Becoming that professional patient is the best way to work within the system that we have in place. It teaches you more than you could imagine about the mundane details of things like insurance coding and laboratory tests, but also how to handle a range of frustrations and disappointments, like having to repeat a blood draw due to inattention of lab techs or realizing that your budget will be in the red after paying for the items you need to stay alive.
That's okay. I mean, it's not okay, but (wait for it...cheesy, not-quite-there wordplay coming your way): today I am "A" patient interrupted by the "D" healthcare experience, but when we "C" a cure, I'm going to "B" having a great deal more free time again. Now that's perspective!