Do you really think that?

Stories like these rub me the wrong way:

• “So and so” was a bad diabetic, she had to test her blood sugar a lot.
• “So and so” had diabetes bad, he had to eat candy all the time.
• “So and so’s” diabetes was so severe, she had to take insulin for it.
• “So and so” has had diabetes longer than you, so he must not have to test as often.
• “So and so” didn’t take care of her diabetes, she’d go out drinking with her friends.

Unfortunately, people prefer to jump to conclusions instead of asking questions. Those without medical knowledge or who aren’t living with this condition on a daily basis have no room to judge, tell horror stories or shrink anything as complex as diabetes into a tiny little box that makes them feel like they have the scoop. In the past year, I’ve been given these examples by acquaintances and complete strangers and they represent severe misconceptions about managing this chronic condition.

I’m not saying that all of the so and sos I’ve been told about have stellar diabetes management skills, but cut them some slack, they’re living with a trying medical condition.

Testing

Frequent blood sugar testing by someone with diabetes is never, never ever a bad thing! It’s never a sign of poor management. Testing our blood sugar is a positive step in diabetes self-management. Testing tells us where we are at a single moment in time blood sugar wise. Testing often can help us see how we’re moving. Testing is the basic foundation for treating our condition and taking over for an organ no longer on auto pilot. Testing is good, even if the numbers are not “good.”

At this point you might be thinking, “Doesn’t Rachel have that monitor thing that makes it so she doesn’t have to test her blood sugar?”

I use, and appreciate, my Dexcom but it doesn’t eliminate my need to do blood sugar testing. If I were to always trust the Dexcom over the way my body feels, I’d be in trouble. There are no 100% accurate glucose testing systems (not even meters!), the FDA only requires regular meters to be 20% accurate. When an engineer friend heard that, he raised his eyebrows and said, “That’s not a very good confidence interval.” My Dexcom only claims to be accurate within a 30% range. Simplified: If my regular meter tests me at 100, I could be anywhere from 80 to 120 (+ or – 20%, see?) If my Dexcom reads me at 100, I could be anywhere from 70 to 130. It’s a significant range folks, from Rachel should probably eat to Rachel could go for a run right now. Plus my Dexcom has to know how to interpret my body chemistry some way, so I have to give it finger stick numbers at least every 12 hours. What if my finger stick is 20% off and my Dexcom is 30% off of that? But I digress…

Testing = Knowledge. Knowledge is good.

Candy

Otherwise known as fast-acting sugar, also sometimes ingested in glucose gels, glucose tablets, juice or on the rare occasion dried pineapple chunks (most awesome thing. ever.). When a person has diabetes, they can’t turn the glucose in their blood into energy, so it builds up. In my situation, my body doesn’t make the hormone insulin to do that for me, so without insulin my numbers go really high and I get sick. Insulin therapy is by no means a perfect science and with all of the contributing factors to blood sugar numbers, including that your liver puts glucose into your blood stream or exercise done the day before, it’s hard to get the perfect amount of insulin at the perfect amount to cover exactly what your body needs. Sometimes insulin or activity makes the glucose level in your body drop low and when that happens, I run the risk of passing out, having a seizure and even dying. Cue the need for fast-acting sugar, most easily found as candy in the wild.

The “better” (read: lower) I can keep my numbers as long as they’re above 70, the least damage is done to my body. But that also means I run the risk of dropping below that 70ish mark more often when I keep my diabetes monster caged (“controlled” as the doctors would say).

Frequent lows prompt me to talk to the doctor about changes I can make to prevent them, but having them doesn’t mean I’m doing something wrong.

Insulin

You, as a non-diabetic person, take insulin for your every day life. The only difference between a diabetic person’s insulin and a non-diabetic person’s insulin is where it comes from. Yours comes from your pancreas, mine comes from a vial by way of insulin pump. Taking insulin, even for someone with type 2 diabetes, isn’t a signal that diabetes is severe… I’m not sure I buy into severity levels anyway, it means that insulin has been deemed the best way to treat for that patient (all patients with type 1 diabetes have to take insulin). There are multiple types of insulin too.

Is your mind blown yet?

For example, when I was on multiple daily injections, I took two very different types of insulin and had at least 4 shots a day (more if I wanted a snack, had ketones or was high). I took long-acting insulin every night that slooooooowly went through my system in an attempt to keep my glucose in acceptable levels day and night. Every time I ate (had ketones or was high) I took fast-acting (by fast they mean 2-4 hours active) to cover the food or bring the numbers down. My pump does its best to mimic a pancreas by giving me consistent little bits of fast acting insulin all day and bigger doses when I tell it that I’m eating.

My a1C is excellent, my blood pressure is beautiful, my bmi is on the low end of average, my weight it good, I’m well nourished, I’m active and I take insulin. I have never said that I have bad diabetes.

Diabetes tenure

No matter how long you’ve had diabetes, you should still test your blood sugar (testing is good, remember?). It’s always going to be a crucial part of management, at least before a cure is found. In fact, I hear a lot of diabetes veterans make new resolutions to test more often and improve their health. Also, I may test openly, publicly and occasionally make people uncomfortable but not everyone operates this way. Many people with diabetes have mastered covert testing in public or will do it when they’re alone so you may see me test a lot but never see another person with diabetes test.

Just because I’ve had diabetes for a year doesn’t necessarily mean that I have to test more or less often than someone who has had it for 20+ years.

Alcohol

What a horribly contentious point in diabetes care. One out of every 10 or so insulin vials I receive has a sticker on the package prohibiting alcohol. Just because I have diabetes doesn’t mean that I can’t drink alcohol ever. Ever heard of “Drink Responsibly”? Everyone should drink responsibly. For someone with diabetes, responsible drinking means not drinking to the point that they can’t care for themselves. For me it means sticking with cocktails that have “skinny” or “low calorie” in the name because the carbs are lower (LOWER not non-existent) or selecting wine or beer for which I know my carb contents. It means testing more often to make sure that I don’t go low… because alcohol can have a lowering effect on my blood sugar.

It’s okay to not understand what life is like for those with diabetes. It’s okay to ask questions. It’s usually a bad idea to tell diabetes horror stories.

I write primarily for myself, but I hope that along the way someone, somewhere will better understand the life that a person with diabetes leads. I’m not a medical professional, neither are the people who said these things to me. I’m an ordinary person tasked with managing my own health day in and day out.