What do you pack when you leave the house with your kids? When we leave the house, anytime we leave the house, we have a little bag of tricks - like American Express - we don't leave home without. Blood glucose meter, extra test strips, alcohol swabs, tissues, sugar for lows (juice boxes, lollypops, Lifesavers, peanut butter crackers), snacks (for non-urgent lower blood sugar numbers), glucagon (for the rare, unresponsive/unconscious lows), extra infusion sets for the pump, a backup meter and extra batteries for the meter and insulin pump. There are so many things that diabetes families do not take for granted.
Pizza. Many families have one night a week reserved for "pizza." We don't. Not to say we don't eat it, we just don't eat it that often. Pizza is delicious, and it's almost good for you: the bread, the cheese, and the sauce - there are 3 major food groups represented here, right? For my daughter, it's not quite so good. She loves pizza. Who doesn't ? We bolus for the 40 gram carb slice of pizza, she eats it, we test her bg two hours later and she's got a nice in-range number. Guess what happens 3, 4, 5 hours later? 200. 300. Pizza has fat - one of those lovely little ingredients that is bad for all of us... but worse for my little girl because not only does fat inhibit - or "slow down" - the body's processing of carbohydrates, it's bad for her 6-year-old cholesterol levels. And, we'll spend hours correcting that high blood sugar after pizza.
Eating Out. Likewise, going out to a restaurant of any kind presents certain challenges. You go to a restaurant, order from the menu, eat what you like. We need the serving size, the carb count, measuring cups and a food scale, a carb counting book such as Calorie King (these will fall into the bag of tricks on such occasions), a trusty calculator, and extra snacks to fill in carbs she can't or won't eat in the restaurant. This is the main reason we didn't eat out for almost 3 years. (Well, there was another, really big one, but we won't mention him - er, I mean, it - here.) Not to mention that constant looming threat of fat in these processed commercial foods, as previously mentioned, which has a ridiculous effect on blood sugar. Thankfully, many chain-type restaurants do have nutritional information available - but I always have to check it online, because when I've asked for it they often don't have it available on location.
Ice Cream. Summer is coming. So is ice cream. Love to stop at DQ for a Blizzard? Or the local dairy for a sundae, or a cone? We did, but it's no longer a spontaneous hey-look-it's-Dairy Queen-want-to-stop-for-some-ice cream? We have to plan for it, between meals, being careful not to eat it within two hours of the last meal bolus, or too close to the next real meal. And oh - there's fat in that too.
Sleep. At the risk of sounding like vinyl skipping on a record player, I haven't slept through the night since June 17, 2007. Even now, when Ava is in her dad's care, I still can't sleep straight through. It's a ritual I won't soon escape - waking up at least twice during the night to realize that she's not home.
Birthday Parties. Omg. There's going to be birthday cake (fat), ice cream (fat) and.... oh no - they're serving pizza (double fat). All the things we love, but for my daughter - a recipe for disaster. Tastes great going down, and everyone who knows me knows I want her to be a "normal" kid as much as possible, but is guaranteed to keep us testing and correcting high blood sugars for the next 5 hours. Not to mention how she feels while she's running high (not so good), or what those high numbers are doing to her organs. What's more, there's a lingering, unspoken worry that she will actually be excluded from birthday party invitations because people who don't understand the disease will assume she can't have all this stuff.
Doctor Visits. How often do you go? Once a year? Never? Only if you're sick? We go to CHOP every 3 months, to test her A1c and go over her general health and diet. An annual physical with her pediatrician. An annual eye exam - especially for people with diabetes, who are at increased risk of retinopathy and eye issues. Oh yeah - as diabetes also lends a certain tendency toward picking up every germ that comes down the pike and inviting it to something close to nuclear warfare on blood glucose - there are multiple sick visits to the doctor as well.
Babysitters. We can't just hire the 16-year-old girl who lives next door, or a friend's daughter. And - for many of us - our own families aren't even trained well enough to babysit. Lucky for me, the change in my marital status and subsequent control over other caregivers for my daughter has allowed my mom to become way more involved in her care than ever before. It isn't just important to have a sitter trained in diabetes care - it can mean the difference between life and death. She needs to know not only how to test blood sugar but be able to spot a "low" even when and especially when Ava herself doesn't feel it. She needs to know how to treat it, and how much sugar to give. She needs to - heaven forbid - know how to administer glucagon if Ava is unconscious. She needs to know how to count carbohydrates and how to use Ava's insulin pump. And, she needs to not only know how to administer shots but also how to change an infusion site. These caregivers are out there - but imagine how hard it is to find and trust someone to care for your diabetic child.
School. School presents its own special challenges. Every teacher who comes in contact with Ava for any time - gym teachers, art teachers, music teachers, librarians - has to be knowledgeable about diabetes. They each have to know the basics of what lows look like and to understand that when she says she needs to go to the nurse, she needs to go NOW. They need to understand that when she's feeling high, she needs access to water, and that she might not perform well on tests. They need to know that when she lays her head down on her desk, she may not just be tired and bored, but on the brink of a medical emergency. It is my job to make sure the school nurse knows how to care for Ava, and knows how to operate her Animas pump - which is different from Johnny's Medtronic Minimed pump, and far different than Jane's diabetes management with MDIs (multiple dose injections). I need to make sure the assistant nurse is capable too, as well as the substitute nurse who often fills in for Mrs. J when she is called to other important district matters. And most importantly, I have a constant phone on where any one of them can reach me ANYTIME. All day.
School Parties. And while we're on the subject of school, there are all those - I'm sorry, stoopid - parties for every gad-dang holiday on the Christian calendar. It would be fine if the other parents who sent food in actually considered the value of a healthy snack. But these parties are swimming in cookies, cupcakes, potato chips and brownies. And then there's those crafty mommas who are always making up goody bags filled with more crap to fuel America's obesity epidemic. I don't mind those so much, really. But my daughter brings them home and I will spend the next 48 hours negotiating which pieces of candy she can eat and when, and then skillfully hiding the rest in the garbage can. (And while we're still on the subject - my daughter does not need "sugar free" candy. We bolus insulin for carbs, not sugar, and there are carbs in sugar free candy. We'd rather not eat artificial sweeteners, thank you.)
Road Trips and Vacations. You pack your swimsuits, clothes, shampoo, beach towels, toothbrushes, etc. and you're on your way. We have to pack all that... and more. Besides our little bag of tricks, we have to pack vials of insulin - both the fast-acting insulin we use every day in the insulin pump, plus a long-acting basal insulin in the event of pump failure (both of which must always be refrigerated) and the syringes to deliver these insulins. We need a loaner pump, obtained in advance from our pump company, in case her pump fails. Infusion sets and insulin pump cartridges, lancets, test strips, IV Prep Wipes, Unisolve Wipes (to remove the old infusion site), a back-up blood glucose meter, Ketostix for testing urine for ketones and a blood ketone meter and test strips for it in case she can't - or won't - pee. Glugagon - never, ever, leave home without it. Snacks. Sugar. Extra batteries for the pump and meters. Prescriptions for all her supplies, in the event any are lost or damaged or we just need more. And, in the case of flying, we also require letters from her physicians explaining her condition and the medical necessity of having the above diabetes supplies in her carry-on bag.
Riva Greenberg, a Type 1 herself and author of 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It, sums it up poignantly:
"There's a tape constantly running in your head calculating what you're eating, when you'll exercise, how much insulin you need, and where your blood sugar is at any given moment to stay within a defined target zone to avoid diabetes complications.... [it] exacts a psychological toll as well... causes emotional stress, a mental exhaustion, and sometimes anguish from doing this every day. There's a certain anxiety about the future and feeling nearly invisible to the public. Some days there is a very human desire to say, 'please see me and what I live with and how hard I work at this.'"