By the Numbers: Looking Back on Almost 10 Years with Type 1 Diabetes

My first blog was about being diabetic; it was called By the Numbers. I‌ used to post my numbers daily. Blood sugar numbers, carb counts, insulin amounts. I‌ shared my struggles as I‌ navigated life with my new diagnosis, at 29 years old, of Type 1 Diabetes.

It helped me cope, I think, sharing what I‌ was going through. It helped make sense of it all, even when, depending on the day, none of it seemed to make sense. Some days it still doesn’t make sense. It makes me angry. It makes me depressed. Diabetes doesn’t play fair. It’s a monster. A monster that requires constant attention, even when you’d rather ignore it. And even when you do pay attention, it never seems to be enough.

If it did play fair, this is how it would work for a typical meal:‌

  1. Check your blood sugar. If it’s a little low or “normal” move on to step 2. If it’s high, calculate your correction dose (the amount of insulin you’re going to add to your shot, which is different for everyone; mine is 1 unit of insulin for every 40 over 120).
  2. Calculate the approximate number of carbs in what you’re about to eat, and use your sliding scale to calculate how much insulin to take. If you were high, add your correction dose to that. Make sure you check the serving size on the label, if it’s packaged food. My sliding scale is 1:10, or 1 unit for every 10 grams of carbs I’m going to eat. 
  3. Take your shot.
  4. Eat.

Spoiler Alert:‌ Diabetes doesn’t play fair.

  1. If you were REALLY‌ high when you checked your blood sugar, you might choose to wait and eat later; this really sucks, if, for example, you were getting ready to sit down with your family and share a nice dinner.
  2. Hopefully, if you’re out to eat, or at work, you remembered to check your insulin pen to make sure it had enough insulin left in it for your meal. Hopefully you also remembered your insulin at all, and didn’t leave it at home sitting on the counter. If you wear an insulin pump, hopefully you didn’t forget to hook it back up to your body after your morning shower. If any of these happens to be true, no fucking food for you. Don’t pass go. Don’t collect $200. Get your ass home and get your insulin.
  3. If you’re out with anyone new, be prepared for twenty-questions or comments after you take your shot or order your food.  “How’s your sugar?”“Can you eat that?”‌ “Does that hurt?”‌“How do you know how much to take?” “I could never give myself shots.”‌“My {grandma/grandpa/uncle/cousin’s friend/pet groomer} has diabetes and they take a pill. Can’t you do that?” etc. etc. etc.)
  4. Sometimes you’ll calculate wrong (a recipe might have more or fewer carbs than you thought, or someone told you something was sugar-free and it wasn’t, or you took too much insulin or not enough) and end up with low or high blood sugar.
  5. If you’re sick, you have to check your blood sugar more often.
  6. If you have your period, expect big swings in blood sugar. Mine used to go really high right before I got my period, really low toward the end.
  7. Pizza is not your friend when you’re diabetic…lots of carbs + lots of fat = delayed high hours later.
  8. If you have young children, they will not understand why they can’t have the juice box you’re sucking down to fix a low. They also won’t understand why you won’t give them your emergency juice box.
  9. Never leave your glucose meter out in the sun for hours; it will need to be cooled down before you can use it. I found this out the hard way.
  10. High blood sugar is frustrating, but easier to deal with. Calculate your correction and take a shot.
  11. Low blood sugar is when the monster comes out of hiding. And the monster is hungry. The monster just wants to eat and drink everything with carbs in your kitchen…if you can get to your kitchen. If you feel the low. I‌ usually do, but not always. Sometimes it wakes me in the middle of the night in a cold sweat, and I‌ drag myself, weak, to the kitchen. (Other times, twice in the past few days, my boyfriend will notice before I‌ do. He’ll ask me to check my blood sugar but I’ll resist, at first, because I feel fine. But he says I feel clammy.) My doctor used the word “primal” to describe the feeling that takes over when a diabetic is low, and I‌ think that’s a pretty good fit. It’s eat (and drink) or die. Logically, somewhere in my brain, I’ll have a fleeting thought about the “rule of 15” and know I should stop with a 15g juice box and maybe a few crackers…but the monster wants more. I‌’ll keep eating until I‌ start to feel better. This usually means that later (like the next morning), I‌ wake up with a really high number, a rebound high, plus a stomach ache from eating too much. And what do you do when you’re high?‌ Take a correction shot. But if you give the monster too much of a correction dose…you go really low…and if you go really low…the monster makes you eat your kitchen.

That’s what happened last night. The boyfriend asked me to check, and I‌ resisted. But when I did, I‌ was at 68. So I‌ ate. But a little while later, I‌ was cold. I‌ thought it was just cold in his apartment (and it was), but I‌ was also in a cold sweat. Checked again, and I‌ was at 50. Juice box, snack bar, part of a big piece of cheesecake (which was excellent and had just the right, subtle amount of orange peel), fuzzy feeling tongue, stomach ache, angry tears, and sleep. Lots of sleep. I got up at 8am with a blood sugar of 358. Took my correction dose, of 5 units, and went home to tackle my laundry and clean my daughter’s room. Later I was feeling off, fuzzy…and was 40. My lowest low in a while. Lows like that are scary. Especially when you’re alone.

When you’re diagnosed with Type 1 later in life, like I‌ was, your whole life changes. You have to let go of who you were and adopt this whole new lifestyle. It’s like a kind of death. I was diagnosed, officially, almost 10 years ago. (What started out as gestational diabetes, the temporary kind, stuck around even after my pregnancy was over.) I was angry, went through a bit of denial, went from a size 14 to a size 0 as the disease took over, then got back on insulin and threw myself full force into managing it as best I could.

I had a great nurse who trained me on using an insulin pump. I tried using a continuous glucose monitor for a while. I tracked my numbers online and for a time, kept my A1Cs within “normal range.”‌

I was the only one in my family with Type‌‌ 1, and I‌ still am. Sometimes that’s a lonely place to be. I started carrying glucagon in case of an emergency, and still do. But most of my immediate family weren’t interested in learning how to use it. Even though it meant they wouldn’t be able to save my life someday, if they needed to. That still hurts and brings hot tears to my eyes. Thankfully, I’ve never had a low so bad I’ve lost consciousness and couldn’t eat or drink, but if you’re reading this and want to learn how to administer glucagon, here’s a video link:

Diabetes is a bitch, that’s for sure. Manage it, count carbs, take insulin, or die. I don’t have a choice.

I’ve been fortunate to have always had good health insurance, and access to affordable insulin. Of course, diabetes isn’t just insulin; it’s insulin (both long acting and short acting; I use the pens), pen needles, test strips, glucose meters, lancets, glucagon). A month’s supply of each of these (aside from the meter itself) was typically $25.

Since January, when I left my old job, I’ve been fortunate to have been on Medicaid. My prescriptions are just a few dollars, if not completely covered.

In July, I‌ started a new job. In January, I’ll be starting on my company’s insurance plan. And things will get expensive. I‌ haven’t collected all of the cash costs yet, but I do know that a month’s supply (1 insulin pen) of my long-acting insulin is over $300. I’m not sure about the fast-acting insulin, but I usually get a box of 5 pens (compared to 1 pen of the long-acting that I‌ take just once a day), so I’m not liking that math. Once I‌ reach my out-of-pocket max I’ll be able to breathe a little easier.

My heart breaks for those without insurance, or who have insurance but still can’t afford insulin and supplies. For those who have to make a choice between paying their mortgage or paying for their prescriptions. For those diabetics who are rationing their insulin to save money. For those people, Type 1 is a death sentence. There’s a battle going on right now between diabetics and the horrible pharmaceutical companies who keep raising the cost of insulin. Of all of the things we have to think about every day just to survive, being able to afford insulin should never be one of them.

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