What would make a new diabetes diagnosis easier for people?
The question has been rattling around in my head for a couple of months now. Two events triggered it. First, a friend's 8 year old relative was diagnosed. That event brought up all kinds of memories for me, and thoughts about what it must be like for them to enter this strange new world. Also this winter, my dad was hospitalized for a very different type of issue, orthopedic in nature, but we had the familiar experience of being in a medical setting where people were speaking a language they knew well and with which we were unfamiliar; and of being in a situation in which many aspects of life changed in a heartbeat with a long adjustment to follow.
In the first few days after his hospital admission, my dad talked often about both staff and friends who had shared their experiences with his particular diagnosis. A doctor had experienced the same injury and told of his recovery. A friend said it took him at least six months to get back to normal. A therapist knew someone who had benefitted from a particular kind of treatment. There were, of course, conversations with the professionals about scan results, and medication options. There were prognosis trajectories to be understood and discharge plans to weigh. But in the end, it seemed particularly important to the patient to hear the stories of people who had been in his shoes.
We were very fortunate that my daughter was first treated for diabetes at an excellent hospital and that we were able to return there for her ongoing care with an exceptionally knowledgeable team. But what do I remember of that week and of the weeks following? I remember talking with the nurse on the unit who had diabetes and who said many reassuring things. I remember every little word of practical and emotionally encouraging wisdom from our first CDE who also happened to have diabetes. I remember being incredibly reluctant to attend a local support group and then feeling incredibly comforted once I got there.
Several years ago, an eight year old girl we love was diagnosed. The day after she returned home from the hospital, we were there. We did not bring reading materials (well maybe a Calorie King book). We did not discuss meter brands, or insulin to carb ratios. We brought a set of colorful measuring cups, Clifford juice boxes, sugar-free jello jigglers and ourselves. And we sat in their living room with them and listened. And we told them our stories. We let them know we'd been in their shoes. They could see we'd made it out of the woods.
There are few more comforting words than, "I've been there," especially when they're followed by, "and I promise it will get better." This kind of support happens sporadically, with JDRF's bags of hope and with other, more local programs, but somehow even though we were at a major hospital in a big city, we were not formally hooked up with any peer to peer support upon my daughter's diagnosis. How could that kind of reassurance become a bigger part of more people's stories?
With the news from Belgium on in the background this week, I'm reminded of a question I've considered and dismissed several times over the past few years:
Is my daughter, at any given time, prepared to 'shelter in place,' or to be displaced?
In this increasingly dangerous world where bombings, mass shootings, terror threats and other such events are becoming commonplace, it's question worth considering.
In her school classrooms, she has a meter and its assorted equipment, one juice box and a roll of glucose tabs. She carries these items with her throughout the day. Would that be enough for a six hour lockdown?
When we travel to the city for the day to see a show or visit a museum, we have double those supplies and usually a small snack. What if we were told to shelter in place due to an event near our location?
When we go away for a weekend, we take twice the number of supplies we think will need for the days we're away, and a vial of lantus and a pack of 10 syringes in case the pump fails. What if something happened which stranded us from home for much longer than expected?
Then there are the days when we run to Staples and forget to bring even the meter kit. Or go for a half mile round-trip walk to the library with only a tiny box of nerds stashed in a pocket, just in case. What if we were unexpectedly detained?
I don't like to consider these questions. Dwelling on the scariness of the world in which my child is growing up isn't on my to-do list. Carrying a bigger bag of stuff in case of an event I desperately hope will never happen seems like a burden which might outweigh the risk.
But maybe there should be extra snacks and spare test strips in her pencil case. And maybe we should have spare insulin and a few granola bars with us when we're away from home for the day. And maybe we should always have at least the meter with us even when we're walking a neighbor home who lives only a block away. And maybe every road trip should involve a really big box of supplies.
But maybe I don't want to think about it.
Eating out usually involves much angst about how many carbs there are on the plate and about how much of the meal will be consumed. And therefore about how much insulin should be given before or (lets be realistic here) as the food starts to be eaten.
We've started to play 'guess the carbs' together most times we eat out. My daughter figures out a number first, then I add my input and we discuss. At several recent restaurant meals she's guessed between 40 and 50 every time.
When it's been my turn to give input, I've eyeballed the plate and said something like, "If you the eat 2 pieces of the battered fish and about 20 of those fries, it's probably around 50."
Or at the Thai place, "You think you'll eat around half of that bowl of pineapple fried rice? Maybe about 50."
Or at the diner, "Three blueberry pancakes? Probably 50."
It's the going rate. Sometimes we add a few at the end if the fries are irresistible or the pancakes arrive heavily dusted in powdered sugar. Sometimes we'll ease down into the low 40's if the fried rice is skimpy on the pineapple or if she's not as hungry as usual.
But lately we've been starting at 50 and adjusting from there. It's nothing more than a mental math trick, really, but I find looking at the food and asking, 'is this about 50?' somehow much less stressful than starting from zero and trying to add up the plate. There is, of course, always a generous margin of error in figuring restaurant carbs. And this method doesn't work when she orders a big salad for dinner.
But if we're going to eat out, we need to start somewhere. For now, we've decided to start at 50.
Last night was much like many recent nights around here. I thought I was finishing up dinner prep and that I had about 20 minutes to relax before I had to be back in the kitchen cooking. And then:
"Mom, it's site change night."
And simultaneously I realized that one element of dinner remained unpeeled, despite that step being necessary for edibility.
So a game plan was concocted on the fly.
"Why don't you bring the insulin and the cartridge out here and fill it. I know you know how but you rarely do it- it'll be good practice. And I'll talk you through it while I peel these."
So she did it. I've been filling the cartridges for so long that watching her struggle with this task which seemingly requires 3 hands was eye opening. But she figured it out.
|I wonder if this is how someone taught me to do this or if I made it up?|
Then, we retreated to her room to do the other half of the job. I am still the primary site putter-inner. But then:
"Should I try to do it? In my hip I mean?"
Her voice was filled with cautious excitement laced with apprehension. I heard self-confidence and self-doubt all at once.
"Of course you should."
Then came the string of questions and worries. "What if I mess up?" "What if the tape gets all folded up and I can't get it to lay down right?" "What if I can't see well enough what I'm doing?" And on and on.
"I think you can do it," I said more times than I can count.
"Get Ruby. I need her here," requested the 14 year old. So the bear with diabetes was fetched from the basket of dolls, webkinz and teddy bears in the corner of her room.
With the inserter in one hand, her torso and head twisted at an extremely awkward angle, and the ear of her Ruby squeezed in the other hand she eventually squeezed the device and inserted the site.
Insert two smiles of pride here.
I know some kids are regularly inserting their own sites at 8. I know that some parents push the issue long before 14.
Neither of these were true for us. And I was okay with that.
She'd put in a handful of sites in her leg, out of wanting to prove she could do it, and once out of necessity. But the leg turned out not to be a preferred site spot, and her 'rear hip,' shall we say, did. It was awkward to try to do by herself and so I let it go.
Our endocrinologist was beginning to ask when she was going to take over the job. I was a little embarrassed to share with other d-people we know that this step hadn't been taken. But I knew the day would come. And I knew my kid. And I knew that I couldn't make that day come no matter what I said or did or suggested or threatened or bribed.
But then it did.
At first it was kind of a novelty to live like we did in the olden days.
The element of surprise added interest to every finger stick.
The highs and lows made us think a little harder about the why's and the what next-s.
The nightly 2 a.m. finger sticks let us relive the old familiar moments of rescuing the stuffed rabbit from the floor and wrestling a hand out from beneath layers of covers.
The once-again regular calls from the nurse's office made my day less lonely.
But the lack of a working Dexcom is beginning to take its toll.
We miss the ability to see highs and lows coming on before they're 50's and 300's.
We miss relying on the graph to show us a steady upswing after a low instead of drawing blood every 15 minutes until we're absolutely sure the number is stable.
We'd like to sleep.
We're all caught up on everything that's going on in the nurse's office and its environs.
So I was glad this morning to find in my inbox the shipping notification for our Dexcom's new transmitter. A combination of my slowness to order it as soon as the low battery notification appeared and the slowness of getting insurance approval for and shipping a new one has left us Dexcom-free for a week.
Which isn't the end of the world, and I'm grateful we have the technology at all, but now that we're used to having the data and the safety net, it's really hard to do without. Even my daughter, who is still understandably ambivalent about the insertion of and constant wearing of another device, asked yesterday about the status. "I can't wait to have it back- I'm so tired of not knowing what's going on." Me too.