November is thought of by many as a time of warm sweaters for accompanying cool weather, a time of prolonged strolls through parks to watch leaves spiral down from trees in vivid fall colors, a time of sitting around tables with family and friends, giving thanks for all that we have. The last bit of fall, the predecessor to winter and hectic times to come…What many people do not know about November is that it is National Diabetes Month and November 14 is World Diabetes Day. This may seem unimportant, dull, just another blasé name assigned to an ordinary day in the middle of a typical week. It is not.
“Oh, yes, I know all about diabetes.” My ears perk up as I subtly raise an eyebrow. I’m preparing for the slew of misinformation I know I am about to be faced with as I am educated about my own disease. She continues talking in the same friendly, casual tone, punching numbers into a keypad with long, manicured fingernails: “Ya know, it’s just horrible,” she shakes her head in disapproval, “how all of the food we eat these days is poison,” (another head shake,) “just poison! But at least all ya gotta do about it is eat healthier and that,” she points at the insulin pump; always attached to me, my most commonly used possession by far, my lifeline, my pretend pancreas that she noticed, starting this whole conversation, “well that just does all the work for you I guess.”
Diabetes is a word that has been flooded with misconceptions. Yes, some people have diabetes that is impacted by their weight, their diet, their exercise regimen. Those people are not Type 1 diabetics. Type 1 diabetes is defined by an inability to produce insulin, precipitated by an immune system attack on the body’s pancreatic beta cells. No one knows exactly why some people contract an autoimmune disease while others do not, though the two most prevalent theories pertain to factors of genetics and exposure to certain viruses. Either way, there is nothing that anyone could have been done differently to prevent me from contracting this disease. There is nothing that I could have done differently.
It’s a lackadaisical, mundane Sunday afternoon and I have nothing pressing to do. I curl up on the sofa with a blanket and the television remote, cozying myself as my dog claims a spot beside me. Click, click, click as I scroll through channels, finding nothing quite entertaining enough. I find a comedy show I’ve watched for years, and they’re making some jokes about current events. I laugh softly at some of them along with the audience that was recorded; they’re pretty funny. Then the next joke: “McDonald’s has just released three new Big Macs, one for each type of diabetes.” The audience laughs. I do not.
Type 1 diabetes requires daily, life-long treatment involving glucose monitoring and insulin therapy. Type 1 diabetics must have consistent knowledge of their glucose levels to properly treat their disease and may use either a glucometer or continuous glucose monitor (CGM.) Glucometers, which read a drop of blood from one’s finger, must be used upward of five times a day if they are used single-handedly. CGMs consist of sensors which are worn beneath the skin that wirelessly transmit data to a receiver, which produces glucose readings every five minutes along with day-long trend graphs. CGMs require minimal amounts of calibration from a glucometer during their one to three-week usages. Insulin must be taken with all meals and snacks, as well as in smaller doses for overall glucose stability. Insulin can be injected in two forms: long-acting, which stays active in the body over the course of a 24 hour period, as well as short-acting, which has a relatively short span of effectivity but is absorbed quickly by the body. The alternative to insulin injections is wearing an insulin pump, which requires the interstitial insertion of a cannula to infuse insulin into the body over a three-day time period. Insulin pumps use only short-acting insulin but have two forms of delivery: known as basal and bolus, that are consistently being delivered.
I wince in pain as I delicately remove the needle from my waist, leaving me with a fresh, new infusion set. I’ve been wearing a pump for quite a while now, and changing my infusion set two to three times every week, and yet I’m almost surprised by the stinging feeling that I experience sometimes. Gingerly, I poke at the skin surrounding the cannula; it seems fine but the pain is spreading throughout my waist; sharp, piercing. I sit down to change out the cartridge that fills my pump, a process now deeply ingrained in my brain. Peel the plastic away from the cartridge, screw the needle tip onto the syringe, draw up 150 units of insulin, inject into the cartridge…Then all of a sudden another surge of stinging pain and I have to stop my process with a half-full syringe. I examine my waist once again: it’s not visibly bleeding but then again it rarely does. It’s normal for infusion sets to feel painful at first, but this is more, this is deeper, radiating, spreading. I inhale sharply and wait one minute. When the pain does not subside, I give up, tearing off my infusion set. Surely enough, the cannula has filled with blood and my stomach already has a little purple dot. After locating a spot on my opposite side, I begin to clean the area with a cold, unmistakably-scented alcohol swab. Like when I filled the cartridge, I don’t have to think much about the process at all, but this time my mind is thinking about other things. I’m worrying about whether I’ll sleep with too much of my weight on this spot, and wake up in pain or how long I should wait until bolusing to give the set enough time to sit. It’s my ordinary routine, my usual regimen but this time I feel disappointed, defeated. I feel like I just can’t win with this disease sometimes.
Perhaps the most surprising bit of type 1 diabetes trivia is that insulin dosing doesn’t really involve sugar. In fact, most type 1 diabetics never even look at the sugar section of a nutrition label when determining their insulin; carbohydrates are all that matter. All nutrition labels have a carbohydrates section, which includes carbs, dietary fiber, and sugar. Since sugar is only a part of the equation and not the whole, it is the total carbohydrates and the amount of dietary fiber that must be considered. Carbohydrates turn to glucose when they are absorbed into the bloodstream and are therefore the basis of short-acting or bolus insulin dosing. Dietary fiber is subtracted from the total carbohydrate count because dietary fiber is not absorbed as glucose. All type 1 diabetics have a “carb ratio” that converts from grams of carbohydrates to units of insulin. For example, a ratio of 1:10 would mean that for every ten grams of carbohydrates consumed, one unit of insulin is delivered.
I bite into a warm, soft pretzel and smile at its comfort, leaning into a movie theatre chair so large and plushy that I feel I could dissolve into it. I’ve chosen a rather pointless, mundane film to watch, but I’m in the kind of mood where a lack of complexity only adds to an activity’s appeal, making this the perfect way to spend my early afternoon after a bustling and intense week. The lights dim, charming music begins to play and I take another bite of pretzel as the movie starts…Three hours later I’m lying on my sofa at home, barely able to keep my eyes open or my mind focused while I stare at the little numbers on my glucometer: 535. I’m about 395 mg/dL above my target blood glucose. I am so nauseous that the thought of food makes me cringe, I am achy to the extent that I can hardly manage to move my arms or legs, drained and exhausted enough so that I fall in and out of sleeping, waking up to bolus more insulin even though it’s been almost two hours and my glucose hasn’t come down at all. What horrible crime did I commit to incur such a repercussion? Eating a snack at the movie theaters. I even gave insulin for my food, and my glucose has risen extremely. I think of all of the other people at the theatre who ate food: candy, popcorn, pretzels, hot dogs, churros, and didn’t spend their afternoon lying on the sofa as a result. I am seriously in awe of those people. I think of all the money I would give to be able to decide I’m hungry and eat something; as simple as that. To not test my glucose, figure out a carb count, bolus, watch my levels afterward…To eat by simply putting food in your mouth seems unreal to me.
A healthy and well-functioning pancreas secretes exactly the right amount of insulin that one needs to stay healthy, ensuring that glucose levels throughout the entire day are close to perfect. Insulin-dependent diabetics are left without this biological guarantee-we calculate insulin doses based off of what we anticipate and what we can best estimate, but this system is flawed and our results are not always stellar. Too much insulin buildup can lead to a low glucose level (for most type 1 diabetics this is defined as a glucose below 80 mg/dL), which must be treated immediately to prevent fainting or seizures. Low glucose is treated by the consumption of carbohydrates without taking any insulin. It is recommended to begin by eating 15 grams of simple carbohydrates (foods that are mostly sugar and have little protein or fiber, allowing for rapid glucose absorption in the bloodstream) and continue to consume carbohydrates if glucose levels do not rise.
My eyes flutter open to a dark room as I wait momentarily to regain my senses from a deep sleep. The first thing that registers with me is a shrill beeping noise. Stumbling for my alarm, I turn on a light and see that it is 1:24 in the morning-not time for me to wake up yet. Next to my alarm is my receiver, the source of the unbearable beeping noise. “Danger, danger, danger!” it is trying to scream at me. “Low glucose!” I am tired and really not in the mood for any food but I am awake enough to know that I have to drink some orange juice. I unscrew the plastic green cap on a personal-sized bottle of Minute Maid that I keep close at all times and the tangy, sweet scent of oranges and sugar fills the room. At this hour of the night, it is nothing but sickening. Propping myself up on my elbows, I drink about a third of the bottle, coming to the realization that orange juice takes on a different taste when you are having it because you have to not because you are thirsty or hungry. It is sickly sweet, almost like cold medicine. “Beep, beep, beep!” “Danger, danger, danger!” I wake up a second time, I’m not sure how long it has been since I last drank the orange juice, but this time I am more aware and I don’t hesitate to grab the partially empty bottle from my nightstand and drink more. The one difference: this time I feel quite lightheaded and wavering. I drink enough juice so that the bottle is only half full, and, now irritated and just wanting to sleep through the remainder of the night, collapse against my pillow. “Danger, danger, danger!” My receiver is not alone anymore, this time my body is screaming too: there is an acute pain spreading down my arms and legs, (I have yet to figure out why my limbs bear the feeling of a low glucose but it happens quite regularly,) my heart is beating rapidly, as if I had just finished running a race, and my hands are shaking enough that I have to put a great amount of focus into holding a juice bottle without spilling. According to my CGM, I am 55 and dropping rapidly, one of my lowest glucose levels yet. I finish the whole bottle, which makes me feel sick in a whole different way because I am not at all used to eating in the middle of the night, temporarily turn off my basal insulin and throw my head back against my pillow while I wait for the trembling, the uncomfortable heartbeat, the achiness to reside.
Type 1 diabetes is my life. It will always require the highest degree of my attention, it will always demand more time than any activity or assignment or chore, and it will always fuel my frustrations. It is exhausting on an emotional level, when I see my friends and family walking around without a pump attached to them, without a couple of portable cartons of juice in their bags, without worrying that something as simple as eating lunch will ruin their afternoon. It is exhausting physically, when my stomach is marked with little red dots from needles, and when my glucose levels are fluctuating so much that I feel as though I could collapse on the floor. It is something that I did not ask for, that no one can take away from me, something that shapes my life.
But living with type 1 diabetes is something that I am proud of. When I wear my pump visibly enough for everyone to see, I am not saying to the world that I have a horrible, embarrassing, shameful disease. I am showing that I am strong enough to get through the days of juggling my typical workload as well as self-operating one of my own organs. I am saying that I have learned enough to remain completely healthy despite managing a 24/7 disease using knowledge that the average person will never need to know. I am brave enough to keep fighting, to walk around with tubes and sensors and needles in my stomach and not bat an eye most of the time. And that is why I will choose to celebrate a wonted Tuesday in the middle of November: because November 14 is a celebration of all the ways in which type 1 diabetes has made me a better person.