Think Like a Pancreas

by Gary Scheiner

  The original “guillotine” (I mean Autolet) for performing fingersticks.

  Then I met with a dietitian—a tiny, middle-aged woman who taught me the fine art of the “exchange” diet.

  “You really don’t have to change what you eat that much,” she told me. “You just have to be careful not to eat too many concentrated sweets, fats, or very large portions of anything.” Apparently, she had no idea who she was talking to.

  I can still remember my “generous” 2,500-calorie exchange diet—chock-full of fruits, vegetables, meats, milks, fats, and starches. Oh, how I hated that diet sheet. I was hungry constantly. The exchange system meant that everything I ate had to be placed in a category and that I could only eat so many things from each category at each meal and snack. Talk about sucking all the fun out of eating!

  My first “exchange diet” meal looked so puny on the plate—a sandwich, a piece of fruit, a cup of milk, and a handful of chips. And there were no seconds, thirds, or fourths like I was used to having. I was hungry all the time.

  The first couple of weeks were really rough. Even after starving myself and doing everything I was asked to do, the stupid test strips kept turning aqua-blue instead of sea green (or maybe it was the other way around). I cried a lot those first couple of weeks. My mom told me that my dad, normally an unemotional guy (a chemical engineer by trade), was crying too, and that he wished it was him and not me who got diabetes.

  A few weeks after my diagnosis I purchased my first blood glucose meter—a Glucometer, to be exact. It weighed about a pound and was the size of a sandwich, but without the onion smell. The testing procedure is still etched in my brain: Guillotine, then squeeze out a big “hanging” drop of blood, dab the big box on the strip, start the counter, wait one minute, blot the strip and insert it in the meter, press the button again, and wait ninety seconds for that 58 or 314 to appear. (Just once, wouldn’t you like to see a meter advertisement in which the reading on the screen wasn’t so darned perfect?)

  That meter lasted about a year. Then Lifescan came out with its first One Touch meter, and I jumped to get one. Imagine—no blotting, a round test area (covering a square box with a round drop is not easy!), and only forty-five seconds from stick to finish. I was in hyperglycemic heaven. It didn’t do much for my control, but I did have an extra five minutes a day to spend doing things other than waiting for my test results.

  My first blood glucose meter, aka “the brick.”

  My early insulin program presented another challenge: NPH and regular, at breakfast and dinner. NPH was the long-acting insulin in vogue at that time; regular was the stuff used to cover meals. The regular would peak in about two hours and last about six; the NPH would peak in six hours and last about twelve. Everyone at the endocrinologist’s office kept telling me the same thing: “You can live a normal life as long as you do things according to your insulin.” Basically, that meant that I would have to eat certain things at certain times of day, exercise (with caution) at certain times of day, sleep only at certain times because of the need to take shots at specific times, and test my blood sugar at certain times. What could be more normal than that?

  Back in 1985, two shots a day was the norm. So was making your life conform to your insulin program. But things did improve over time. I was given a sliding scale for my insulin, which was a good thing because I began sneaking in lots of extra exchanges in my meals and snacks, and was rarely “ocean blue.” With all the exercise I did, I probably had as many lows as I had highs, so my glycosylated hemoglobin levels showed a decent overall average, but the low blood sugars were becoming more frequent and more severe, especially during the night.

  When I returned to college in the fall, my doctor suggested that I move my dinnertime NPH to bedtime. Although that helped cut down on the nighttime lows, I started having more lows before lunch. Oy vey.

  My One Touch meter got a lot of use through college (I went to Washington University in Saint Louis, home of the Cardinals and the world’s best frozen custard). Before dinner my friends in the dorm would gather to wager on my blood sugar level. Everyone threw a dollar on the table, with the closest guess taking the loot. Some of them became pretty adept at the whole diabetes thing: They would ask questions like, “What did you eat for lunch?” and “Did you work out this afternoon?” Talk about getting by with a little help from my friends! Lighthearted stuff like that kept me from getting down about my diabetes.

  Despite the technological improvements, frequent high and low readings still plagued me. Anyone with diabetes knows how those blood sugar swings make you feel fatigued and frustrated. Besides the support of my friends, exercise was a key to helping me keep a positive attitude. I had always been into sports, but after being diagnosed with diabetes my passion for staying in shape soared to a whole new level. Every day I managed to find time for some form of exercise. If no one was available to play basketball or racquetball, I would go to the gym to work out, ride my bike around the park, or jump rope in the lounge to the beat of Motown music. Exercising made me feel like I was still strong, fit, and in control of my own health, despite having diabetes.

  Unfortunately, a serious low blood sugar often followed the emotional high I got from exercise. One month after starting my first postcollege job, I showed up for work in a complete daze. Some days I couldn’t even remember getting dressed or driving to work. That I never crashed buck-naked into a tree is amazing. To make matters worse, I was no longer getting symptoms that a low blood sugar was coming. Gone were the good old days of shakes and cold sweats. Now, mental confusion was the first noticeable sign that my blood sugar was dropping, and sometimes it was too late for me to handle it on my own.

  Thank God for my wife, Debbie, who I met in college. She’s very good at knowing when to let me do my own thing and when to get involved, and I knew I would marry her after our first Valentine’s Day together. She learned a few things about diabetes and went out of her way to prepare a huge heart-shaped box filled with popcorn and pistachios. You know what they say . . . the way to a man’s heart is through his pancreas.

  Debbie and I left Saint Louis and moved to Chicago after we both graduated. While in Chicago I met with a few more endocrinologists and other specialists about my diabetes. By that time I was growing more and more frustrated with the constant swings between highs and lows. Nobody had any answers—just the same old rhetoric about “This is what your insulin is doing. You just need to adjust to it.”

  Then I had the most severe low blood sugar of my life. It came in the middle of the night after I had been playing full-court basketball earlier in the evening. According to Debbie, I was pale and completely unresponsive. My limbs jerked uncontrollably. She called for paramedics, and according to the reports, I fought them off pretty well while they tried to put an IV into my arm. When I finally regained consciousness, Debbie was standing next to me with an exhausted, worried look on her face. I looked to the side and saw tubes coming out of my arm. I also saw blood. My blood—on the pillow, on the sheets, on the floor—everywhere.

  That experience really shook me up. Then I met an exercise physiologist who worked part time at a nearby diabetes clinic. He had diabetes himself and gave me some suggestions about eating extra food at bedtime and self-adjusting my long-acting insulin to prevent the nighttime lows after exercise. This was the first time anyone had introduced the concept of self-adjusting my insulin doses. Why hadn’t my doctor told me about this?

  That exercise physiologist opened my eyes to more than just how to adjust insulin by a few units (his recommendations worked very nicely, by the way); he set me on an entirely new career path. I liked his approach so much that I decided to become an exercise physiologist for people with diabetes. So what if there were no full-time jobs for exercise physiologists at diabetes centers? I loved to exercise, I had diabetes, and I was on a mission to put the two together to help as many people as possible. So I went back to school, earned my master’s degree in exercise physiology, and landed
a position with the Joslin Diabetes Center’s affiliate in Philadelphia.

  Being a New York/New Jersey native, Philadelphia seemed close enough to home—and it had its own NBA, NFL, and Major League Baseball franchises (I don’t think I could live in a city that did not have them). So we packed up and moved to Philly, where I became the Joslin Center’s full-time exercise guru. I have to admit, my office was really cool. It had weights, treadmills, bikes, video equipment, and a great view of the sports complex in south Philly. The only thing better than my office was the clinical team with whom I worked. The doctors, nurses, dietitians, and psychologists were heavily into the concept of flexible insulin dosing and self-adjustment. I cross-trained with them at every opportunity and absorbed as much as I could about the many facets and nuances of diabetes care.

  Perhaps the greatest breakthrough in my own self-care was my decision in 1994 to try an insulin pump. Nobody at our diabetes center had used one, but our patients expressed a mounting interest to have an insulin pump program. So I decided to be the guinea pig.

  I’ll never forget how nervous I was the day I got hooked up to that little gray box. There were about twenty doctors, nurses, and administrators watching my every move. My first infusion set was a steel needle (the needle actually stayed in all the time). Soon, a flexible plastic infusion set became available, followed by a set that could be disconnected and reconnected easily. Before that, you had to stay connected to the pump all the time—during showers, sports, even sex.

  The pump was very basic compared to today’s models. Nevertheless, simply having the ability to adjust basal insulin levels and mealtime boluses really helped to stabilize my blood sugar levels. For the first time in almost ten years I could sleep past 8 a.m. without having my blood sugar skyrocket. I could delay my lunch without bottoming out. And best of all was that I could work out to my heart’s content without going low in the middle of the night. In fact, I haven’t had a single severe low blood sugar since I started on the pump more than fifteen years ago.

  My first insulin pump, the MiniMed 506.

  With pump therapy came a whole new approach to dietary management: carb counting. By counting the grams of carbohydrate in my meals and snacks, I can now eat what I choose as long as I match it with the correct dose of rapid-acting insulin. “Grazing” is still a problem; blood sugars tend to stay elevated if meals and snacks are consumed too often. So I try to spread my feedings several hours apart.

  The introduction of rapid-acting insulin analogs (lispro, then aspart, then glulisine) starting in the late 1990s has had a tremendous impact on my diabetes management. Unlike regular insulin, which takes thirty minutes to start working, two to three hours to peak, and five to six hours to fade, the rapid-acting analogs peak in about an hour and only last three to four hours. They do the job and then get out of the way. A few years ago I added another injectable medication to my treatment program: pramlintide (Symlin). This hormone, produced by the beta cells of the pancreas (and lacking in those of us with type 1 diabetes) helps to slow down digestion so that blood sugars don’t spike right after eating. The combination of rapid-acting insulin and Symlin has worked wonders. Gone are my 300-plus blood sugars right after eating; instead, the readings stay remarkably level between meals. I can also afford to be more spontaneous and flexible in terms of what and when I eat.

  Of course, there have been a few other developments along the way. My blood glucose meter now takes less than one microliter of blood and performs the test in five seconds. An adjustable lancing pen with lancets that are micro-thin has replaced the old Guillotine. Using a sound lancing technique, I can barely feel the finger pricks anymore. If I choose, I can even take a reading from my arm or leg. I can do a Hemoglobin A1c in ten minutes with a machine that I have in my office, and virtually everything is downloadable. My latest insulin pump has so many advanced features that it can practically do my taxes for me!

  And then there’s my latest toy: the continuous glucose monitor (CGM). I began using CGM back in 2004, when the system was connected to your body by way of a cable and the information was kept secret until you took the sensor out of your body and downloaded the receiver to a computer. Since then, the accuracy has improved: They have gone wireless, they produce on-screen graphs and data for real-time use, and they sport a variety of customizable alerts to guard against high and low glucose levels.

  Personally, I’ve found CGM to be the best thing since sliced sourdough bread (you’ll learn about the magical powers of sourdough bread later on in this book). I love the fact that I don’t have to prick my finger quite so often, and the alerts have saved me from many highs and lows. Perhaps the best thing about them is that they provide context to glucose values. Knowing you’re 100 (5.5 mmol/l) is one thing; knowing that you’re 100 and dropping or rising quickly is another. I was officially sold on CGM when I completed my first ten-mile run (the Broad Street Run in Philadelphia). I ran the entire course with my CGM receiver in my fist, checking as I approached each rest stop to see if I needed to grab water or Gatorade. My control was immaculate, and I finished the race without having to stop once.

  But technology aside, the thing that has made the greatest difference in my life with diabetes is learning how to match my insulin to my needs. No more molding my life to fit my insulin program. Now I shape the insulin to fit the life I want to live. And that’s what I try to teach my clients to do—to think like a pancreas!

  As proud as I am of what we have accomplished in diabetes care and treatment, I can’t help but recall how proud my original endocrinologist was with the state of things back in 1985. Twenty-five years from now, I’ll probably look back to today and think, “Did we really do all that just to manage diabetes? That was totally archaic!”

  At least I hope so.

  Chapter Highlights___________________________________________

  •I, like you, think diabetes is a royal pain.

  •My diagnosis took place in 1985 in Sugarland, Texas. God’s honest truth.

  •Diabetes self-management has evolved considerably over the past several decades.

  CHAPTER

  2

  What’s the Dang Diddly Point?*

  Picture this: You show up for your regular appointment at the doctor’s office. After the usual checkup, you report to the front desk, checkbook in hand, ready to pay for your visit. “Hold on,” says the receptionist with a cheerful smile. “That won’t be necessary. Here you go.” She hands you an envelope stuffed with cash. “This is for all the work you’ve put in to taking care of your diabetes.”

  That’s when the alarm clock goes off. Dream over.

  Taking care of diabetes is really just an ongoing series of small sacrifices, costs, mental efforts, and time commitments.

  Taking care of yourself when you have diabetes takes serious work, and at times it may seem quite thankless. It’s not punch-clock kind of work; rather, it’s more of an ongoing series of small sacrifices, costs, mental efforts, and time commitments, with the occasional minor discomfort. So why do it? Even though you’re not likely to get paid for the work you put in, there are many valuable benefits you are likely to experience.

  What’s in It for Me Now?

  We’ll get to the long-term benefits of proper diabetes care a bit later on. What motivates most people is immediate gratification. Not tomorrow, not next year—right now. Here is just a partial list of ways you will be rewarded immediately for managing your diabetes. (I think you’ll find it well worth the effort!)

  Immediate Benefits of Diabetes Control

  •increased energy

  •more restful sleep

  •improved physical performance

  •appetite reduction

  •brain power

  •stable moods/emotions

  •fewer sick days

  •healthier skin and gums

  •personal safety

  •predictable menstrual cycles

  Increased Energy

  Raise your hand if
you like being tired all the time. Okay, raise your hand if you’re too tired to raise your hand. Elevated blood glucose reduces energy levels. High glucose is a sign that you may not be getting enough fuel into your body’s cells to burn for energy. The fuel is there . . . it’s just stuck in the bloodstream, kind of like gasoline trucks that drive around aimlessly instead of unloading at local gas stations. This shortage of fuel inside the body’s cells causes sleepiness and sluggishness. Even if the glucose is only elevated temporarily, the lack of energy will be noticeable during that time. As soon as the level returns to normal, energy levels usually improve.

  More Restful Sleep

  We all know how important a good night’s sleep is for feeling good and being productive the next day. Getting sufficient sleep is also linked to appetite control. Our production of the hunger-controlling hormone leptin is diminished when sleep is inadequate.

  It may interest you to know that poor glucose control reduces the quality of sleep. If your glucose is high enough (typically above 180 mg/dl, or 10 mmol/l), you might wake up several times during the night to run to the bathroom. This is caused by urine diuresis. When glucose levels are elevated, the kidneys have a hard time keeping all that extra sugar in the bloodstream. Sugar spills over into the urine, and it drags a lot of water along with it. As the bladder fills, it wakes us up and leads to those middle-of-the-night two-minute, sugar-induced peeing sessions. If the thought of a restful, uninterrupted night’s sleep appeals to you, control your diabetes!

  Improved Physical Performance

  Whether you’re an aspiring athlete or just hoping to make it up a flight of stairs without losing your lunch, glucose control has an immediate effect on your physical abilities. Elevated glucose can reduce your strength, flexibility, speed, stamina, and endurance.