In 2010, my pancreas stopped metabolizing glucose like that of a normal human being. At the ripe old age of 22, I went on two different types of insulin to keep me from going into DKA, or diabetic ketoacidosis. If you think back to the critically acclaimed 20th century film Con Air, Mykelti Williams' character Mike "Baby-O" O'Dell is sweating, tired, even feverish because his blood sugar is rising due to the lack of insulin/needles. What he's experiencing is DKA, where your body starts to shut down because of the excess glucose in your body. How would I have survived the Oregon Trail? I wouldn't have. I probably wouldn't have even finished packing the wagon.
My symptoms appeared over the course of about six months: constant, unquenchable thirst, frequent urination, dry mouth, sweet smelling breath, rapid weight loss, and extreme fatigue. Before I was diagnosed, I lost about 15 pounds, I was drinking about two gallons of water a day (because it was healthy!), and I was getting up more than once during the night to pee, which was from the massive amount of water I was drinking. I chalked it up to being healthy and that it was summer. My weight loss simply occurred because I was no longer working at Domino's, plain and simple. This was until my annual physical where my doctor questioned my drinking habits (the water, but I can see why that's confusing) and asked if I had ever been tested for diabetes. I hadn't, so she went ahead scheduled me for lab work.
The average blood sugar reading is somewhere between 80 and 120. When I was diagnosed with Type 1 diabetes, my blood sugar was 600. The meter they were testing me with actually maxed out at 500 so they needed to get another one. My doctor suspected that contracting mono at age 17 was the cause of my diabetic diagnoses five years later: the virus compromised my pancreas, and while it slowly died, I had unknowingly had my last hurrahs of drunkenly eating a sheet cake while drinking the darkest, Guinessiest of beers.
Getting diagnosed with diabetes was baffling. I literally knew nothing about the disease except that Wilford Brimley pronounces it wrong. It doesn't run in my family and I didn't know anyone that was diabetic (as far as I know). A c-peptide test confirmed that my pancreas was no longer producing insulin, qualifying me as Type 1, or insulin dependent and what used to be known as juvenile diabetes, as it was commonly seen in kids but not adults.
A lot of people are shocked when they find out I'm diabetic. But you're so thin! You're so tiny! But you ate an entire pizza the other night and didn't bat an eye! Didja eat too much candy as a kid? It's true. I am relatively thin, tiny, and during my drinking career, I could put away an entire pizza if it was on thin crust. And fuck yeah, I love candy. But the reason I'm asked these questions or shrugging off these statements is because the media has a bad habit of only reporting on Type 2, the other half of the disease which is caused by genetics and a predisposition to an unhealthy lifestyle.
Fact: Roughly 95% of people with diabetes are Type 2. That remaining 5ish percent is Type 1.
This fact alone explains why people are so shocked when they find out about my diagnoses; I do not look like the stock footage the local news used in regards to a new study about "diabetes." I am simply the minority. What people are even more surprised about is that I found out that I had what used to be "juvenile diabetes" at a non-juvenile age. But again, it's simply because I depend on insulin to stay alive. Many Type 2s have a pancreas that still produces at least some insulin, which is why they can regulate their disease with diet and exercise. Because I'm insulin dependent, I can't control my diabetes with diet and exercise. Here's some bullshit I've encountered from the uninformed:
- Oh, you should start doing yoga, and cut out all white foods. Then you won't have to take insulin! Practicing an Eastern-based exercise and not eating white foods will not cure me of my disease. It can be treated, but not cured. Type 2s have claimed time and again that they've "cured" their diabetes. I'd like to know if they would still consider themselves cured after drinking a Sour Patch Slurpee. And why the fuck wouldn't I want to eat white food? White foods are the best foods, and not because they're white.
- My aunt lost a foot due to diabetes. Fuck your aunt. I do not care about your relatives and their failures with the disease. Would you tell a new cancer patient that your grandmother died of the same kind of cancer? No. So quit being a dick and keep your footless family comments to yourself.
- Bobby has 35 candy bars. He eats 17 of them. What does Bobby have? Diabetes. No, he doesn't. Your shitty joke about food with high amounts of carbohydrates isn't accurate. A person with a perfect functioning pancreas can eat 17 Clark Bars if they're still a thing and be completely fine. Eating 17 candy bars won't give you diabetes. What will give you diabetes is if you're overweight, lead a low activity lifestyle, it runs in your family, AND you have the dental strength to eat 17 candy bars.
- Are you sure you can eat that? YES. Yes, I can fucking eat that. I can technically eat anything, but there are some things I choose not to eat. That giant piece of wedding cake? That's an extra 12 units of insulin in addition to the 12 I've already taken for the rest of today's food, so no, I'm not going to have a giant mountain of your bulbous romantic cake. I can also drink soda and juice. But I can drink diet soda at any time, whereas I have to take an absurd amount of insulin to ingest soda or juice. There are items I choose not to eat or drink, but it's not because I "can't" have them.
After five years of learning to prick my finger while driving and injecting insulin discreetly under the table at fine dining establishments, managing the disease is second nature, most of the time. Most of the time. After my diagnoses came the onslaught of prescriptions, devices, and delivery systems. At any given time, I have glucose tablets, two types of insulin, spare needles, lancet canister, lancet delivery device, test strips, glucose meter, and the pretty carrying case all this bullshit goes in. It's more than a handful, really. It's an entire human organ split among plastic paraphernalia that only a pharmacist has the privilege of distributing. I can't go anywhere without my kit of life saving plastic.
But Liz! What is it really like having diabetes?
It sucks. It's the first thing I think of when I wake up. I have to take a mental inventory of my kitchen, make sure I have enough insulin, and check my blood sugar before I eat anything. Ever. I can only take insulin once every four or five hours, so if I'm offered a cookie or any other complimentary snack, chances are I'll have to turn it down, and then I start to worry if I'm coming across as rude by refusing the complimentary snack because I don't want to have to explain why I can't have it to a person who probably won't care or possibly have a ton of questions. I need to constantly do math. I actually know the servings of carbohydrates in most prepackaged food. If I'm eating two pieces of pizza and my blood sugar is at 161, that means I'll need to take 15 units of insulin and not eat for the next four to five hours. And it's the last thing I think of before bed, consciously feeling for symptoms of hypoglycemia before I nod off and have awful dreams related to the disease.
It's complicated. I initially intended this post to be a crash course for anyone unfamiliar with the disease. I'm still incredibly angry about my diagnoses, something I was never able to completely get over. I felt like diabetes took my freedom, my spontaneity. My end goal when I graduated college was to become an expat and never return to this country. Instead, I stayed put and learned about how one of my organs was no longer functioning as intended. I would love to have four less prescriptions and to just be able to EAT whenever I'd like to, but I can't. Diabetes has robbed me of simply enjoying a meal. I'm constantly wondering where my blood sugar is at or if a few Craisins won't completely suicide bomb my average blood sugar reading for the day.
In other words, I'm constantly thinking about it. I have to in order to stay alive. Even right now, I'm drinking a can of zero calorie soda that has four carbs in it, but I can't take insulin for it because one unit covers more than the total carbs in the can. Everything I ingest needs to be accounted for. When I was drinking, I actually considered myself a good diabetic, as in I would pay very close attention to the nutritional facts of what I was drinking. Whisky and vodka have no carbs. A Coors Light tall boy has 5 carbs per can. As long as I was eating while drinking to make sure my blood sugar wasn't going low, I was in something's good hands. Even when I was blacked out to the max, I still managed to keep my blood sugar at normal levels. Diabetics in bars can be a strange situation: the symptoms of low blood sugar can mimic the signs of being drunk. I was extremely fortunate to have nothing bad happen to me while I was destroying my body while somehow thinking I was saving it. Ah, the wonderful world of alcoholism.
There are some days where I think I'm completely burned out on the disease, which is an actual thing: diabetic burn out. The urge to take care of oneself becomes less and less, your carb counting gets sloppy, you test your blood sugar less and less. Many people with diabetes also experience depression because of the limitations, lack of freedom, and diligence required to treat the disease. I've been there myself; not testing before bed, eating a snack knowing it will give me a blood sugar spike almost immediately.
I treat diabetes like I do most of the other things in my life: I'm doing the best I can. It's the best attitude I can have about the disease, even though it sucks and it's constantly hanging in the forefront of my conscience. I'm now managing two diseases instead of the usual one, and I'm going to do my darndest to stay afloat.
Also Zevia soda sucks. Don't drink it or buy it. It tastes like cotton candy made in the Chernobyl sarcophagus.