Reading: Living with Type 1 Diabetes Sucks

I’m sick. It feels as though I am going to die. It’s 87 degrees outside, and with the humidity at 89 percent, each time I leave my air-conditioned apartment I’m afraid I’ll literally pass out if I don’t quickly find a shady spot. The thing that’s so weird is that I’ve spent the majority of my life playing outdoor sports in the blazing sun with no problem.

But that was before I became a type 1 diabetic.

The first time I heard the word was in the third grade when the art teacher raced into the room to say he had diabetes and needed sugar — fast — and could we please give him our cookies. I unhappily parted with my two Oreos.

I Discover What Type 1 Diabetes Is

Two years ago, I still didn’t have a clue what being a diabetic meant. Sure, I’d seen the TV commercials saying 29 million Americans have diabetes and it was important to take whatever pill they were selling, but it had nothing to do with me.

Then, a few years ago, I was on a trip with four other writers. During lunch, one of them took out a little kit, pricked his finger until it bled onto a tiny strip, inserted the strip into some meter device, and stuck a syringe filled with insulin into his abdomen.

“I’m sorry,” he said, “I’m a type 1 diabetic.” It was annoying because before every single meal, he apologized and repeated the same ritual. I never stopped to think about how truly annoyed he must have been.

Three years ago, they found a small cancer cell in my pancreas and performed The Whipple, a six-hour-long operation in which they cut off the head of the pancreas and rewired four other organs.

I Have My Pancreas Removed

A year later, they found a new cancer cell in my pancreas and, so I’d never again have to worry about pancreatic cancer, they removed the entire organ.

But having no pancreas turned me into an instant type 1 diabetic — not type 2, which is usually gotten from excess weight and inactivity but where you don’t have to stick needles into yourself five and more times a day. Like the other 1.25 million Americans who have type 1, I would have to inject insulin or die; I would have to constantly monitor my blood sugar and shoot up at every meal as well as at bedtime and upon waking, and sometimes even more.

It took a while to be able to deal with constantly stabbing my body with needles because every prick hurt.

What drove me crazy was that I couldn’t just shoot insulin into my body before meals. First, I had to figure out exactly how many carbohydrates I was eating to know how much insulin to shoot. But who knows how many carbs are in each food without having to measure portions of everything from grapes to yogurt? Yes, I have a carb-counting phone app and a book that does the same, but I’ll be damned if I’m going to look up every single thing I eat (except celery, which has no carb count).

I’m Forced to Shoot Up at Every Meal

I carried insulin-pen needles with me. If I was eating out, I’d excuse myself and say, “I have to go shoot up,” just to shock my companions.

Eventually, I poked myself under the table. Last year, my endocrinologist suggested a continuous glucose monitor (CGM), an excellent solution because I’d be able to take many fewer blood-glucose readings. There’s now a grape-sized device on my abdomen for the CGM, but I‘m too old for bikinis so it doesn’t much matter.

You’d think I’d stop whining and be grateful that I don’t have multiple sclerosis or lupus or fibromyalgia or a more difficult autoimmune disease.

I can still hike and run and bike and do all the activities I love and did before I was diagnosed, a good thing because type 1s have to exercise to keep down their blood sugar. Best, unlike a disease where you live your life in a wheelchair, no one has to know I have diabetes unless I choose to tell them.

Still, diabetes stinks.

Yes, I can correct too many carbs with insulin (if I don’t, I might go into a coma and die) and yes, I can correct a low reading with juice or candy (provided I have it with me), but nothing about this disease is consistent. I go to a spin class and my blood sugar goes too low. I go to the same class the next day and my blood sugar goes too high.

I never know how my body is going to react so I have to be prepared for anything.

I Can’t Leave the House Without Backup

I used to leave the house with just my keys and iPhone. Now, even when running short errands I wear a small fanny pack with my glucose monitoring meter, test strips, needles, juice, and glucose tablets (which taste like chalk).

Recently, I was walking, not even running, in Central Park. I’d brought the blood testing kit but forgot candy. Suddenly, my neck went clammy, my body began to sweat, and my hands shook. I was all alone. I sat down fast. Fortunately, there was a vendor about 20 feet away, so I managed to finally walk over and buy orange juice.

But what if there hadn’t been help nearby? If I’d gone without sugar too long, it could have led to irreversible brain damage.

If I go so low that I know I might go into a coma, I have an emergency glucagon kit at home with a vial and syringe. But I need to shake it up and inject it, and if I can’t even get out of my chair, how can I do that?

Then, of course, there are all the side effects from going too high. It’s a really ugly picture. There’s possible heart disease, stroke, blindness, kidney damage, foot problems, eye problems, teeth problems, and God knows what else.

Before my diabetes, I saw doctors once a year, at most. Now I need multiple visits to my endocrinologist, ophthalmologist, podiatrist, and dentist.

Oh, yes, and because I had cancer, I also have to get scanned and see my oncologist four times a year. And now I also need to see a dermatologist because I keep getting skin rashes, due undoubtedly to my compromised immune system.

There’s no one but me at home, so I keep glucose tablets and orange juice at my bedside for emergencies and have had to use them on many occasions.

I Find My Inner Superwoman — And Just Deal

I have cried about this stupid disease until my eyes were little slits.

This summer was hotter than ever, a real bitch because heat can cause blood sugar levels to both spike and plummet. But crying isn’t going to make my diabetes go away. I am alive and as well as I can be, even if I do have to constantly monitor my blood sugar.

I’m still jumping on my bike, kickboxing, racing down the steps to the subway, jamming blues harmonica, and getting on planes every few weeks for assignments. I am happy, working hard.  And no longer scared all the time.

Women with type 1 diabetes have an average life expectancy of about 68 years compared with 81 years for those without it. So considering I’m already past 68, I just think of myself as Superwoman.