Learning the Game of Diabetes (Book Sample)

The following is a sample from a book I wrote about my life and struggles with diabetes.

The Game

I’d say diabetes is more of an art than a science, because every person’s body and lifestyle is different. There is no one-size-fits all treatment.

In essence, you want your sugar to be balanced. Carbs bring blood sugar up, insulin brings it down, and then there are other factors like exercise, hormones/stress, miscalculations, and miscellaneous errors that come into play.

There are different types of insulin, different methods of taking insulin, and different ways to monitor blood sugars. Your doctor will help you determine the right methods, tools, and formulas for calculating insulin dosage. These methods, tools, and even formulas may need adjustments as you get older or whenever your lifestyle changes. Here is a comprehensive list of possible treatments provided by the National Institute of Health. The most common treatments that I’ve personally seen among my diabetic friends are shots, insulin pens, and the insulin pump.

My life with diabetes began with shots. I would get a shot before breakfast, lunch, dinner, and sometimes before bed. I was required to eat a snack between meals and before bed, and not allowed to eat anything at any other time.

Unless my blood sugar was low.

Each time before I took a shot, I was to check my blood sugar and decide how many carbs I was going to eat and then calculate my dosage (Mom did this for me when I was young). The formula looked like this

D = [(B - T ) / F ] + (C / R)

Where D is the dosage of insulin, B is your blood sugar, T is your target blood sugar (usually 120), and F is your correction factor. C is the amount of carbs you eat, and R is the carb ratio.

For example, the formula I use now is D = [(B - 120 ) / 40 ] + (C / 8)

Most of my diabetic friends have a target of 120. Sometimes you aim for other numbers if you’re worried about low blood sugars. The F and R in this equation are essentially based on insulin sensitivity, plus other factors that the doctor will evaluate. Everyone’s body is different, and the doctor will look at things like patterns in your blood sugar to evaluate your sensitivity in order to set your formulas.

It’s worth noting that the formula may be different throughout the day, because your insulin sensitivity can change throughout the day. An essential component of diabetes management is learning how and when to adjust these formulas, and adjusting the formulas is an ongoing conversation with the doctor.

The reason I had to stick to a strict routine of eating and dosing at certain times each day is because of how injected insulin works. When you inject insulin, it takes time for it to take effect--several hours time. In contrast, carbohydrates raise your blood sugar in as soon as 15 minutes.

Ideally, you want to have the insulin take effect just as the carbs do so that your blood sugar remains relatively stable. As you can imagine, it’s difficult to do this unless you plan your meals well in advance.

Insulin Shot Injections

You can inject insulin anywhere on the body where there is a substantial amount of fat; usually arms, legs, abdomen and/or buttocks. In my experience, the more fat, the less pain. You’re supposed to rotate injection sites so that scar tissue doesn’t build up too quickly.

My personal favorite injection site is the buttocks because it usually hurts the least, but it’s hard to reach back there and give yourself a shot. The abdomen is the most practical injection site because you don’t have to worry about exposing yourself in public and you can easily reach it.

What Happens With High Blood Sugars

Untreated high blood sugars can lead to hyperglycemia and diabetic ketoacidosis (DKA) which can be lethal. DKA occurs as a result of hyperglycemia--the body realizes it’s not getting energy from carbohydrates, which aren’t being processed without insulin, and looks for other ways to get energy. The liver processes fats for energy and releases a chemical called ketones, which muscles and tissues can use for fuel. Problem is, ketones cause the blood to become acidic. If your blood gets too acidic, your organs can fail and you can die.

I’ve never personally experienced a diabetic coma, but I have experienced the ketoacidosis that comes before it. I can usually feel when my blood sugar goes high, I feel disgusting, lethargic, depressed, irritable, hopeless, nauseous, thirsty, and sleepy.

The body tries to get rid of ketones by urinating, which is why extreme thirst is so characteristic of diabetes. Sometimes when my blood sugar is high, I get hungry or crave sugary drinks. Even though that would make the symptoms worse, I think my body craves sugar in those moments because it realizes the cells aren’t eating and concludes the blood sugar must be low.

I was always told to test for ketones if my blood sugar goes over 250. You can test for ketones in the blood, or in the urine. The latter is how I’ve always tested for ketones. Urine testing used to be how many diabetics would check their blood sugar levels before blood testing glucose meters became more widely available for home use in the 1980s.

The problem with urine tests is that they don’t give you real-time results like blood tests do--they give you a sense of what your sugar or ketone levels were recently. So if your urine sample indicates a trace amount of ketones, there might be more in your body that you need to get rid of.

Symptoms of a High Blood Sugar

  • Lethargic

  • Irritable

  • Extreme thirst/hunger

  • frequent urination

  • Nausea/vomiting

  • Odd taste in the mouth/smelly breath (this is from acidic blood, which runs in the gums)

Every person may have slight variations of these symptoms, or different tell-tale symptoms. I usually recognize a high blood sugar from feeling lethargic and irritable, and any of the above symptoms typically grow more severe the higher my blood sugar gets, and even more severe with ketones.

What Causes a High Blood Sugar?

  • Eating too many carbs without getting enough insulin

  • Stress/adrenaline

  • Low activity

  • Malfunctioning equipment

  • Using expired or defective insulin

  • Seasonal changes in metabolism

  • Hormones

  • Dehydration (which can make your blood sample reading appear higher than it is)

  • Miscellaneous reasons--sometimes you just don’t know.

How to Treat a High Blood Sugar

Diagnose the reason--Did I forget to take insulin, did I miscalculate my carbs? If I did everything right, my pump might not be working, or I might be using expired insulin.

Dose - after ensuring your insulin and equipment are working properly, calculate the dosage for correcting your blood sugar and take the dose.

Drink water and rest - to satiate hunger you can eat low carb foods like leafy vegetables or meats.

A lot of my friends ask what they can do to help when they see me suffering from a high blood sugar. Unfortunately, there isn’t much to do besides wait for the insulin to kick in and drink lots of water.

Ketones and Extreme Cases

It’s especially important for children and newly diagnosed diabetics to test for ketones because they may not recognize the symptoms of ketones. You always want to catch and correct ketones as early as possible.

I used to test for ketones religiously when I was a kid. I’ve only ever used the urine tests. Some people don’t like to use urine tests because they don’t provide real-time information the way blood test meters do.

Now when my blood sugar is high, I assume I have ketones and drink lots of water. There’s no harm in drinking water, and I’d rather not spend the money on the tests.

That said, it can’t hurt to use the tests if you have them. You don’t need a prescription for ketone tests and they aren’t as expensive as other supplies.

Ketones should be taken seriously. But having ketones, even severe ketones, does not usually mean a trip to the hospital. You’ll know when you need to worry--if someone is barely conscious, vomiting uncontrollably, experiencing seizures, etc. you should not hesitate to seek medical assistance. Otherwise, make sure the person with ketones is getting insulin, water, and rest.

Things that you should not do while you have ketones/a very high blood sugar

  • Eat something very sugary and/or high in carbohydrates

  • Exercise

  • Have important/emotionally charged conversations

  • Drink alcohol (which can raise your sugar and/or cause unexpected crashes)

What Happens With Low Blood Sugars?

People without diabetes are actually known to experience low blood sugars quite often, especially when they’ve gone without eating for a while. Stress and exercise can affect hormones like insulin and thus your blood sugar, but it’s relatively rare for things to get out of control like they can for diabetics who take insulin artificially.

Untreated low blood sugars can lead to hypoglycemia, which can also be lethal. The reason is because the body will start to shut down in order to conserve what little energy it has. If you go too long without energy, you can lose consciousness and eventually die.

I’ve never personally lost consciousness from hypoglycemia, but I have come close a few times.

Low blood sugars are often caused by either taking too much insulin and/or exercise, the latter can make you more receptive to insulin and thus your normal dose can have a more powerful impact than it normally does.

How To Treat Low Blood Sugars

I’m lucky in that I feel my low blood sugar as well as I feel the need to use the bathroom. I will wake up out of a deep sleep, even a drunken sleep, if my blood sugar is low. Not every child is so intune with their own body, and when I was first diagnosed my parents would take turns testing my sugar in the middle of the night, and bring me juice if it went low.

We used to wonder out loud about what I would do as an adult. Sometimes Mom would say I’d need to set my own alarms and test, sometimes she imagined I would have my roommate or partner do that for me.

Turns out I have a gift of sensitivity to low blood sugars that can wake me up automatically in the middle of the night as sure as needing to go to the bathroom will. Continuous glucose monitors can also detect and alert you of low blood sugars, and dogs can be trained to do the same thing.

The usual target blood sugar is 120, but sometimes people aim for a blood sugar above 150 before bed so that they can worry less about dropping low in their sleep. Similarly, athletes might aim for above 150 before taking the field so that they don’t need to abruptly sit out to replenish their sugar level.

Typically I will feel my sugar drop when it reaches below 80 whether I’m awake or not. Even if you’re not diabetic, you might feel your blood sugar drop this low too. When my blood sugar falls below 60 I start getting loopy, below 40 I can barely stand, and the lowest I’ve ever been was 39. My guess is people lose consciousness around 35, but I’ve had friends who were conscious at 23. Everyone’s body is different.

What Causes a Low Blood Sugar

  • Taking too much insulin

  • Exercise

  • Hormones/stress

  • Sugarless alcohol (sometimes)

  • Miscellaneous reasons--sometimes you just don’t know.

How To Treat a Low Blood Sugar

Fast acting sugar, such as fruit juice, candy, or a sports drink can quickly raise a person’s blood sugar. I prefer liquids because they take effect faster. Some doctors advise against treatment with sugary sodas and sports drinks because it’s easy to over correct and make the blood sugar go too high--this is sometimes called spiking.

Spiking causes physiological stress on the body and can also lead to prolonged high blood sugars--essentially trading one problem for another.

That said, it’s better to spike than pass out. It’s always fine to use whatever you have on-hand, whether that happens to be candy, ice cream, or even just regular sugar packets.

If you’re treating someone who is barely conscious, you can also rub syrup or honey on their gums to help revive them. If that fails, be brave and use the glucagon emergency kit and call 911 to get them professional help.

The Glucagon Emergency Kit

If the diabetic is fully unconscious, you must use what’s called a glucagon emergency kit. This is usually a syringe in a red case. The syringe has a liquid to be mixed into a vial full of a white powder. Draw the solution and inject it into the person. The solution will make the liver release glycogen which shocks and revives the body. Turn the person on their side so they don’t choke on their own vomit.

Glucose Tablets

When I was diagnosed, I was told the best way to treat a low blood sugar is with glucose tablets. This is because the portions of glucose tablets are easier to measure than, say, ¼ of a can of soda.

Tabs fall into the simple carbohydrate category, each chewable tablet has 4 grams of carbohydrate, which elevates the blood sugar by roughly 15.

Back in the day, I only knew of glucose tablets that were orange flavored. Over the years I started seeing grape flavor, watermelon, and today glucose tablets come in all sorts of flavors. To me, they all taste like chalk, but if you get a bunch of diabetics in a room, it’s only a matter of time before we discuss which ones we like best.

No Food or Drink Allowed

I personally don’t like to eat glucose tablets anymore for a lot of reasons. Besides the poor taste, carrying around glucose tablets in a jar can get noisy. The more the tablets sit in the container, the more they create dust. And when you open that container to treat your blood sugar, a huge cloud of dust escapes into the air around you.

Believe it or not, this can cause quite a scene, and it is difficult to explain yourself and your cloud of dust while you’re in the middle of a lecture, meeting, or theater.

In my experience, it’s much easier to be discrete with liquid low treatment like fruit juice or sports drinks. People probably aren’t going to scold you any differently for eating glucose tablets, because they think you’re eating candy, but once they know you’re diabetic they usually let you make an exception to the rule. If you want to be proactive about it, you can advise the usher(s), teacher, professor, boss etc. about your condition.

Managing Lows

One of the most immediate dangers of type one diabetes is of low blood sugars.

This is why wearing medical identification, whether a bracelet, necklace, or tattoo is so important. If a diabetic loses consciousness, the paramedics need to know how to revive them. Otherwise someone might treat the unconscious diabetic for dehydration, drug overdose, or assume the unconscious person is sleeping off a night of heavy drinking.

Low blood sugars can also kill diabetics in their sleep. It’s important to monitor a child’s blood sugar throughout the night because if their sugar drops too low, they might not wake up from it. This is a danger that technology like CGMs (Continuous Glucose Monitors) have helped alleviate because the machine can detect the blood sugar drop and wake you up with an alarm.

The standard protocol as I’ve always understood it is to treat a low blood sugar with carbohydrates that will raise the blood sugar back to the target of 120, calculated at a rate of 1 carbohydrate raising the blood sugar 4 mg/dl but it can vary.

It’s also commonly recommended to take some sort of protein like cheese or peanut butter along with the carbohydrates because that helps to stabilize the blood sugar. This is because proteins and fats delay insulin absorption.

I was always told to wait 15 minutes before checking again to make sure the blood sugar doesn’t continue to drop. This was especially impractical for me to do at school, where I’d be sitting around in a classroom or if I was in the middle of an important test. By law, I was allowed to excuse myself and take whatever time I needed to address my blood sugar, but I seldom took advantage of that and would usually push on without retesting unless my symptoms didn’t improve. Of course, a CGM removes the need to retest every 15 minutes, but I never had one when I was a kid.

2 AM Checks

When I was first diagnosed, my sugars would often drop in the middle of the night more frequently than they do now. This can happen a lot to newly diagnosed diabetics as their doctors are still fine-tuning the formulas. I have also heard some doctors theorize that newly diagnosed children have not developed a resistance to artificial insulin that they do later in life, others also speculate that shortly after being diagnosed with type 1 diabetes, the body is still producing some of its own insulin.

For the first few years, my parents would take turns checking my blood sugar in the middle of the night, and they would wake me up to treat low blood sugars, and have to check me again in 15 minutes to make sure my levels were stabilizing.

I slept through most of those checks, and never appreciated what it was like for my parents until years later, when I had to do it as a volunteer summer camp counselor. If a kid’s sugar keeps dropping and he’s not really responsive, it’s hard to tell if he’s sleepy or if his blood sugar is dropping. It’s hard to sleep easy on those nights, because you get worried about the little guy. Sometimes you check him every 15 minutes until the sun comes up just in case.

Don’t Tempt Fate

Before there were CGMs, my diabuddies and I laughed at the retest-in-15 rule. Many of us who played sports made a habit of running to the sideline, chugging a sports drink, and getting right back on the field--and that usually worked out fine.

But it’s important to take testing seriously when it comes to strenuous activities like swimming and drinking alcohol--which of course we never did until we were of age. Both of those activities can cause your sugars to drop even more and inhibit your ability to recognize the symptoms of a low blood sugar. So while I’m not one to discourage diabetics from playing sports or drinking, I advocate being careful when they do.

My blood sugars always dropped when I would go swimming, and I always made sure to give my recovery time its due diligence because the fatigue of a low blood sugar can come very suddenly. A low blood sugar can make it hard to concentrate, hard to stand, and sometimes even hard to breathe.

I think it’s a combination of a full-body exercise and having fun that would make my sugars drop like they did when I’d go swimming, and I’ve seen the same thing happen to a lot of the kids I worked with at summer camp. Given that stress can raise blood sugars, I wonder if fun helps lower them.

Certain types of alcohol can also lower the blood sugar. I’ll cover this in more detail in another chapter, but for now I’ll just say that it’s important to learn your body and how it reacts to alcohol. It can’t hurt to be careful.

The Art of Treating Lows

There’s an art to treating a low blood sugar that depends on a number of factors. For example, if your blood sugar is low before eating, you don’t treat it. You just take less insulin for the carbs you’re about to eat. And you might correct a low more aggressively before exercise compared to treating a low while watching a movie.

Generally anything below 80 mg/dl is considered low, and if your sugar is hanging around 80-100 it’s recommended to treat it lightly, if at all. If you’re just sitting around in class, having a blood sugar of 100 could mean no action needed. On the other hand, if my blood sugar were 100 before bed, or before a hike, I’d want to bring it up a little.

The following is based off how I was taught and how most doctors I’ve worked with recommend treating low blood sugars:

Moderate Lows: (79-99) - eat a light complex(ish) carb snack, like fresh fruit or a granola bar or crackers worth 10-15 carbs. Re-check blood sugar in 15 minutes to adjust if needed.

Lows: (60-79) eat 3-4 glucose tablets, and check in 15 minutes. Alternatively, you can have a small portion of juice.

Severe Lows: (below 50) eat 4-7 glucose tablets or a regular serving of juice (26-32 carbs), retest in 15 minutes and then again in 30 minutes to make further corrections.

Barely conscious: rub honey, syrup, or other sugary substance on the gums of the diabetic. Monitor blood sugar every 15 minutes for several hours.

Unconscious: inject the person with a glucagon emergency kit, turn the person on their side, call 911. Tell the paramedics that the person is TYPE 1 DIABETIC and make sure they know what to do. Apparently, sometimes they don’t.

In all my years in the diabetic community, I have heard horror stories from nurse practitioners, doctors, and parents who met paramedics that did not know how to treat diabetes. Given how much and how often I’ve had to explain my diabetes to healthcare professionals, I would not be surprised if those rumors were true.

Carb Counting

This is one of the most essential and in my opinion oversimplified aspects of diabetes management. Essential because the formula for insulin dosage depends on carb intake. Oversimplified because you don’t always have accurate ways to count carbs. But the basics of carb counting can help you make pretty good estimates.

Different types of carbs also raise your blood sugar at different rates. The following terms and categories is how I define them for myself, based on general knowledge and conversations with dieticians:

Simple Carbs raise your blood sugar quickly--sometimes almost immediately. When I was diagnosed, I was told I was not allowed to eat these, except to treat low blood sugar. Examples include juices, candy, cookies, etc.

Intermediate carbs raise your blood sugar rather quickly, but not as “instantly” as simple carbs. Examples include white rice, pasta, bread, oranges, bananas, crackers, etc.

Complex Carbs take a bit longer to raise your blood sugar, and are often considered healthy alternatives to simple carbs. Examples include whole grains, beans, peas, carrots, nuts, etc.

Fats while most fats don’t have carbohydrates, eating them in combination with any of the above can cause a delay in insulin absorption. They can also be advantageous for stabilizing low blood sugars, but eating high carb and high fat meals usually leads to my sugars going and staying high for longer, and there are special insulin dosing tricks I need to perform when eating those sorts of meals. Examples often include and are certainly not limited to pasta, pizza, fried foods, and ice cream.

Proteins and vegetables are considered “free” foods because they don’t really have much of an effect on your blood sugar. I wasn’t a terribly picky eater as a kid, but I wasn’t a big fan of vegetables at the time either. Now I have to admit that diabetes has absolutely played a major role in my vegetable-heavy diet. Not only do I feel good from eating healthy foods, I also feel good when my blood sugars are well-managed. So I’ve learned to like a lot of foods my parents used to have a hard time trying to make me eat.

Portion Control

In order to make your insulin dose as accurate as possible, you’re supposed to measure everything. In the United States, most foods come with nutrition labels that tell you how many carbohydrates are in one cup of pasta, rice, mashed potatoes, etc.

This requires a lot of math and juggling measuring cups because a serving of pasta made by Company A might be 3/4 cup, whereas a serving of pasta made by Company B might be ⅔ cup. This gets even more frustrating when portion sizes are measured in different units, as there are imperial and metric measurement systems.

And even more impractical to accurately measure carbs when you’re eating something homemade.

Going Out To Eat And Counting Carbs

When you go out to eat, you don’t always know how many fries they actually put on your plate unless you travel with a scale. But then you still don’t know everything that’s going into your food unless you can spy on the kitchen.

So going out to eat was discouraged. Thankfully my family made mostly home-cooked meals anyway, but after we got the hang of diabetes at home, Mom was determined to make sure I could still enjoy meals out.

We had a diet reference book to use that would help us estimate carbs. Today there are a gazillion apps you can use to track how many carbs might be in something, but a hamburger at one restaurant is different than a hamburger at another, so unless you have a device that can scan the food in front of you somehow, you are going to have to use those sources as references to estimate your carbs.

Don’t Rely On The Kitchen Staff

A personal recommendation: do not expect servers and cooks to understand all this carb counting nonsense. I don’t think it’s fair to expect that of them.

Chances are your server is not a diabetic, nor a dietician. And you are likely not their only customer or their only priority.

Sometimes I get embarrassed when people try to get the frustrated and overworked kitchen staff to join us in the carb-counting fiasco. I understand it’s coming from a place of love, and becoming the Sherlock Holmes of carb counting on my behalf was a role my Jewish mother was of course more than happy to take on.

We learned over the years that it’s more trouble than it's worth. Even though most servers, bless them, are eager to help, they simply don’t know how.

Realistically speaking, you can’t count carbs accurately at restaurants, because so much can get lost in translation between the kitchen staff, the nutrition labels, the modified recipes, and varying degrees of English fluency.

When I was first diagnosed, we didn’t go out to eat much for that reason. And if we did, it would be best to order something high in protein, low in carbs. Grilled meats and vegetables are usually good to order because it’s usually safe to assume that they don’t have (m)any carbs unless they’re slathered in barbeque sauce.

That said, sometimes you will find a restaurant that will bend over backwards to try to help you count carbs. Sometimes you’ll run into someone who understands diabetes very well, or if you’re at a chain restaurant, they may have nutritional information about their dishes. I’m sure it’s best to take advantage of those whenever possible.

For all other times, you get good at estimating over the years.

No Desserts

When I was first diagnosed, I was not allowed to have soda, juice, milkshakes, ice cream, cookies, candy, etc. unless they were sugar free. Sugar free doesn’t always mean carb-free, as many cookies, ice creams, puddings, and cakes that are sugar free still have some carbs. That said, many gelatin desserts that are sugar free are also carb free, so for a while that was my best option for dessert.

And I got tired of it very quickly.

I tend not to order desserts anymore because I love to eat “real” food and fill up on things like rice and pasta, which have a lot of carbs. No matter how much insulin I take, eating a lot of carbs makes my blood sugar go high and stay high. We all have choices to make as diabetics, and for me personally, an overpriced scoop of ice cream usually isn’t worth that trouble.

The Gear

Everywhere I went, I had to carry a whole suitcase worth of supplies everywhere, which included but was not limited to: alcohol swabs (to clean fingers, vials, and injection sites), cotton balls (for blood), the lancet device, boxes of lancets, the blood sugar meter, extra batteries for said meter, a vial of test strips, a bag of needles, a sharps container to dispose of used needles and lancets, the carbohydrate reference book, a calculator for insulin dosage, a vial of clear (short acting) insulin and a vial of cloudy (long acting) insulin, ice packs to keep the insulin cool, glucose tablets in case my blood sugar went low, a glucagon emergency kit, ketone testing strips, emergency contact lists, and water.

Yes that is a long list, and yes I’m probably forgetting something.

Oh yeah I also had to wear a diabetes identification bracelet or necklace, which was not to be taken off at any time. I’ve since gotten the symbol tattooed on my arm, because as I got older I kept losing the bracelets.

Having an insulin pump or insulin pens means you have different gear, which I’ll cover later.

I hope you've enjoyed this sample. Feel free to contact me at jason@jasonhewett.com to read more or ask me any questions. I am actively looking for agents/publishers for the manuscript.

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