I recently had the pleasure of listening to a presentation called Minimally Disruptive Medicine with Victor Montori, MD, @vmontori brought in by Joyce Lee, MD, @joyclee through the C3N Project, #c3n an exciting collaborative group of clinicians, patients, researchers that are focused on creating patient-centered care for patients with diabetes.
While Dr. Montori worked extensively with patients living with Type 2 Diabetes, I still found the idea of burden and capacity as deeply meaningful for our world of T1d. So much so, that I wrote down a few thoughts to help encourage other clinicians and researchers a clear way to understand what patients and caregivers deal with 'behind the scenes' of a three-month clinic appointment.
How do some patients fare better than others? How do we share those things that make some patients more successful? The nagging unanswered questions remain. At the end of this article, I tacked on some positive skills that we as a family have incorporated and continue to use today. I don't know if there is a right or wrong way to approach this - I just know there are better ways.
This isn't typical content for Naturally Sweet Sisters, but I believe from places of darkness, there can be much good - like care that is centered around what a patient truly needs.
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I own a car. Maybe you do as well.
If you choose to own a vehicle, than you accept that you must care for the car; such as purchase gas, perform maintenance checks and pay for repairs. You also accept that in order to drive the vehicle, you must obtain a driver's license and purchase car insurance. Mostly (and all of us on the road hope for this!), you accept that you need to obey traffic laws and drive in conditions that allow you to be prepared for anything that you could jeopardize your vehicle ownership, such as locking the doors at night or stowing the vehicle in a garage during inclement weather.
While this is actually a burden (think in terms of money, time, effort, wasted thought), I bet no one would ever consider it as such. The alternative to a car is being stuck hitching a ride on public transportation, a bicycle or horror of horrors in this day and age, your own two feet.
The burden of owning a car doesn't overwhelm me because I created the capacity to easily bring it into my life. I have enough financial, emotional and physical space to allow for a vehicle to not overpower my well-being. Within my personal limits, the burden of a vehicle can be managed.
Let me emphasize my enjoyment of owning a vehicle, take one look outside my window at the current mid-western weather of March snow, sleet and sub-zero temperatures, and I think you would be pretty happy to not have to trudge to a bus stop.
Let's take this positive vehicle burden analogy and compare it to the burden of Type 1 Diabetes (T1D).
Unlike a car purchase, we did not choose to bring T1d into our home.
Unlike a car purchase, there is no other option.
Without a choice (or maybe because the choice was too horrific to consider), we forced ourselves to accept the steep learning curve that comes with the maintenance of 24 hour/7 days a week, blood sugar checks, manual or electronic logs, insurance coverage, diabetes supply scripts, orders, purchases (injection needles, multiple insulins, pens, pen needles, glucagon, insulin pumps, cartridges, reservoirs, tapes, continuous glucose monitors, lancets, test strips, needles, adhesive wipes, unisolve, neosporin, numbing cream, alcohol swabs, glucose, juice, candy and more such as other medications), the clinic visits, the endocrinologist, CDE, the on-call physicians, the ER visits, the insulin dose changes, medical records, the outreach support, the specialist visits, the school caregiver education, 504 planning, fundraising and advocacy. SO.MUCH.ALL.THE.TIME.
We were forced to accept all of these things immediately because the burden was laced heavily around the body of a tiny three-year old little girl that we deeply loved. Our capacity for love is endless and that has always been the reason we could manage the burden. Even for a second diagnosis in an equally loved eight-year old little girl.
As much as I tend to tuck that heaviness away and disguise it in the love that I feel for my children, it does rear it's ugly head from time to time.
Burden is a heavy word.
Like in the morning where I am busily reading our daughters for school and a pump alarms a low battery alert. Fumbling through the steps to change the battery; prime, load and fake out a cannula fill, I make a mistake. In my hurry, I miss the obvious low cartridge of 10 units of insulin or less. This second process makes me repeat all of the first steps; prime, load and fake out a cannula - EXCEPT I decide that I might as well change out her infusion site too, so a real cannula fill comes but only after I poke her with a sharp needle, which then her tears tell me she DID.NOT.LIKE.AT.ALL.
The burden weighs heavily on me as I hastily wipe her eyes and pretend that all is well so that I can get her to school on time. It hits again when I drop her off and watch her walk into a school where most certainly, no other child had to take a shot to get there.
When I get home, I remember that I forgot to make a change to her insulin to carb ratio, which means that yet again, I will need to handle her pump and disrupt her after school play time. The burden feels even heavier as I think about the scratch that I saw near the cartridge cap on the pump and wonder if I need to call her insulin pump company to report a possible warranty issue. Since my daughter is now at school and I can't find her pump serial number, I add it to the mental check list of items that will be performed when she is back at home from school. Then, I force myself to begin to think of the work that I have actually been hired and paid to do. The burden never fully resolves as each day brings a new set of circumstance.
Burden is a heavy feeling.
My days are full of types of wonder. Trying to act appropriately for the psycho-social restrictions that T1d dictates and hope that my daughters, ages 11 and 13 and managing a day at school, changing classes, without an aide or a school nurse. Left to much of their own skills, we have worked out secret plans and strategies in which they test blood sugars and text me. My "wonder" is akin to worry at times when those checks/texts are missed and I am left hoping that all is well. I then wonder at the amount of self-control that I possess and I wonder at why I do. Is it perhaps the clinical distance that I have forced myself to take in order to raise successful, independent children. There are more times that I can count in which I just wanted to keep them safely at home, where I can ensure that they are fine under my watchful eye.
As they come home from school, I stifle the urge to ask their blood sugar numbers before they tell me about their day. Catching my older, savvier child's eye, I wonder how much she knows and if she is holding back from telling me about the unpleasant side of attending school with T1d. I listen carefully. I can't make mistakes because the burden is laced heavily in the parents trudging along before me which warn that helicopter parenting leads to noncompliance in teenagers. Or worse, parents that ignored the signs of depression. Instead, I wait and listen to stories of the day, ensure they eat a healthy, protein rich snack that keeps blood sugar from skyrocketing before we eat dinner an hour later. When they are gone, I fetch their CGMs for a quick review and double check backpacks to make sure they have enough low blood sugar supplies for the next day. The burden is that T1d sucks much of the joy of regular interaction with my children.
Burden is a heavy state of being.
There are a few moments in which I procrastinate and then, feel guilty. It comes as I lie in bed and listen to the CGM give its first bleep of warning which is programmed at UNDER 90 mg/dl. I hear it and I wonder if my sleeping husband is also listening. Without a sound, I wait a moment longer and then feel a guilty rush for not running right out the room. The burden whistles softly as I hand out a juice box in the dark while making as little noise as possible so she can sleep. My head, tired from eight long years of sleep deprivation is heavy as the weight of a ton, but the guilt is in that thought of self-pity, is that I am not the one with the 'real' burden of T1d. The sweet sleeping cherub that I awoke for is the one to be most concerned for.
The burden flows heavy through the early alarm and as I struggle out of bed just a few hours later to wake my girls, I must first check their blood sugars and pre-bolus their breakfast insulin. Even heavier burden comes seconds later as the resulting number for one of the girls, is much too high for our upcoming clinic appointment. Feeling heavily defeated before the A1c has been performed, as we have steadily increased her insulin ratios against the swarming tide of growth and puberty hormones to no avail. Later, I will try to call in her numbers but will have to wait through the standard time of 36 hours for a call back. By then, her numbers will have stabled and I will be faced with the question of what to change, especially during the night, when she (and I ) most need our rest. Stuck in an uncomfortable position because when I decide not to implement the changes, I must then explain why to endocrinologist that may feel like checking over night is something patients only need to do for the first few months. I wonder why I sent in the numbers at all as it just increased my burden tenfold.
Burden, in all it's heaviness is always there. It ebbs and flows but it is never quite alleviated. We may pretend it doesn't matter, but it does. When T1d patients think of a cure, they are looking for relief of that burden.
And YES! A cure would be the ultimate relief.
We have learned other ways to minimize burden (and while it is not perfect, it can be helpful).
1.) We embraced T1d education and continue to do so.
Establish a solid team (parents, child, school, clinic and coaches/caregivers)
Never stop trying new things.
2.) We prepare for not one T1d event, but for at least three in advance.
Keep a calendar.
Map out the day.
Squirrel away food, meter and pump supplies.
Have a plan.
Understand that mistakes will be made and you will head back to #1 and learn.
3.) We redirected our world to better suit our T1d needs.
Learn to say no.
Learn to say what you need - not just what you want.
Learn to forgive.
Learn to heal.
Learn to accept.
4.) We simplified T1d.
Become a hacker, designer, creator, risk-taker.
Make it easier to do what needs to be done.. IE, by creating T1d stations everywhere you spend time. Look through new eyes at common things.. IE, make a linen closet into a supply closet.
Friends shying away from sleepovers? Have them at your house.
Dinner with night owl friends? Suggest appetizers before you go.
Carb counts missing? Use an app, book, or best guess and check again in an hour.
5.) If it isn't working for your T1d, than let it go.
This is true for processes and people, including members of your team.
The positive of our T1d burden is that even though it is always there, we have continue to have endless amounts of capacity to care for our child, simply because we love them.
I would love to hear your thoughts on burden and capacity. Tweet me @natsweetsisters or drop a line at our facebook page, https://www.facebook.com/naturallysweetsisters or leave a comment on the blog.