Lisa Kogan, who was nine weeks pregnant when she was diagnosed with diabetes, reflects on the one-two jab life gave her.
Life can turn on a dime. One minute you're sitting in your lawyer's office discussing the possibility of adoption, the next you're standing in your bathroom staring at a little stick that—against all odds—has somehow managed to register two skinny pink lines. Anyway, that's my story. I was 41 years old, I was pregnant, I was cautiously euphoric. And then the world turned upside down.
It was September 24, 2002. Nearly three weeks after examining me, my obstetrician had sent a letter saying my glucose appeared "slightly elevated" and suggested a glucose tolerance test. Fed up with my inability to ever get her on the phone, I called a colleague's husband, a respected obstetrician-gynecologist, and read him the results of the test. There was a pause—I remember that—and then I know he said, "Uh-huh, okay, hold on a minute while I make a call." After a very long minute, he got back on the line with what struck me as an absurd question. "Are you wearing shoes?" he asked. "Yep, I'm in my sensible pregnant-girl flats," I answered. "Good," he said. "I want you to grab your bag and get into a taxi. You'll be going to 168th Street and Saint Nicholas Avenue. Take the elevator to the..." It was going way too fast. "Listen," I said, "I'm pretty beat, but maybe tomorrow." And then he cut to the chase: "You're diabetic," he said, "and this baby can't wait until tomorrow." He explained that my soon-to-be-former doctor had taken much too long to diagnose me and that my baby's organs were being formed in an environment of uncontrolled sugar. He said other things, but it was all a blur. Thirty-five minutes later, I found myself at the place that would become my second home: Columbia University's Naomi Berrie Diabetes Center in New York City.
I have endured great pain in my day. A large woman named Helga waxes my bikini line every May, and I had a roommate who once listened to Enya for nine straight hours—so believe me when I tell you I understand human suffering, and I realize that in the grand scheme of things a little finger jab or an occasional shot in the arm doesn't really hurt all that much. But needles freak me out. It's irrational, it's phobic, it's not changing anytime soon. Before I meet the doctor, I am given a hemoglobin A1C test—a simple finger stick that determines your average blood sugar for the past three months. "Not that hand; this one," I sob. "Wait, this finger. Use this finger. Hold it; I'm not ready," I plead as I breathe in the nauseating smell of rubbing alcohol on cotton. The little girl in the next chair rolls her eyes. A slightly more sympathetic preschooler assures me that "they're quite good here." It is not pretty when you're seated with two people under the age of 7 and the only one who wants her mommy is you. Just then I feel a hand on my shoulder. "Hi, I'm Dr. Robin Goland. We'll sit down and talk in a couple of minutes," and in a futile effort to further reassure me, she adds, "I promise you're not the first woman in history ever to be diabetic and pregnant." But I'm pretty sure she's wrong. "Actually, Dr. Goland, I believe I'm the first woman in history ever to be pregnant."
Holding my newly pricked finger as if I'd been bayoneted, I settle in for a chat with Dr. Goland. She is a combo platter, equal parts wry, compassionate, and no-nonsense, a slim powerhouse in her late 40s who I imagine cheerfully defusing a midlevel nuclear device while forging a permanent peace in the Middle East and harnessing solar energy. Over time I'll find out that she has absolutely no grasp of pop culture and once forgot her child at an ice rink, but this is only our first date. Today I need her to be clear, kind, heroic—and that's exactly what she is.
She explains that there are 18 million diabetics in the United States, and nearly one-third of them are walking around undiagnosed: "The problem is that often a person with diabetes feels no different from someone with normal blood sugar. Their blood vessels could be getting damaged, but they have no idea anything's wrong. In most cases, an individual's normal blood sugar, after fasting overnight, is under 100. The symptoms people generally associate with diabetes—urinating frequently, unquenchable thirst, poor wound healing, feeling very tired—don't usually occur until the blood sugar is above 250. The slow rise in blood sugar, from out of the normal range to frank diabetes to really severe high blood sugar, can take a decade or more."
Next: The shocking results of Lisa's test
To my total shock, the result of my hemoglobin A1C test indicates that my diabetes is not gestational. Gestational diabetes usually strikes after the 20th week of pregnancy and disappears within an hour of giving birth. But at nine weeks along, it's apparent that I was diabetic before ever becoming pregnant. The test reveals my A1C level to be 8.4 percent. A normal count would be 6 percent, and many people are at 4 or 5 percent. Dr. Goland asks me about my family history (cancer galore). She asks me if I smoke (never). She asks me about my diet and fitness routine (used to see my trainer three times a week, currently see my refrigerator three times a night). Now it's my turn to ask the questions.
"What exactly is diabetes?"
"Well," she begins, "there's type 1 and type 2. Type 1 occurs because your own immune system attacks your insulin producing cells. When that happens, you can't make insulin, so to survive you have to take it by injection. Type 2 is much more common. That's a disease where the pancreas makes insulin but the body doesn't respond to it normally. We call that insulin resistance. And in the end, over years, the pancreas often has trouble making insulin. The result in both of these diseases is that the blood sugar goes too high."
"Then what happens?" I ask.
"Blindness, loss of limb, kidney failure, heart attack, stroke."
With each word I shift deeper into catatonic noodle mode.
"But," she adds, brightening, "every one of these things can be delayed or prevented. Because we didn't used to know how to keep blood sugar normal and how to prevent the complications, a lot of people are under the misconception that first you get the disease, then you get the problems, and that's that. The truth is, if you work to control it—and it is work—none of this is inevitable. You can be a healthy person with diabetes—you may never experience any of these complications."
My eyes scan the room as I try to take all of this in. There's a Harvard diploma hanging on the wall, pictures of three tanned tourist kids in front of some Greek ruins, a tiara-wearing teddy bear resting on the windowsill. I massage my ever expanding stomach and finally ask the million-dollar question: "Is my baby okay?"
Dr. Goland says it's too soon to tell. She wants to send me to a lab so they can run more tests, and I start a fresh round of sobbing. Directing me to the nearest box of tissues, she steps out of the room and returns followed by a band of angels. "You know what, Lisa, you don't need to get yourself to another lab. We're going to take some blood right now." Two nurses, Dr. Goland, and one vampire/medical assistant named Berenise ("She's the best") bring me into an examination room and start rolling up my sleeves in search of a good vein. It's a remarkable tribute to peer pressure and vanity that I ever allowed my ears to be pierced, and I explain how that procedure actually made me pass out. They have me lie down, and the process begins.
"So," says Dr. Goland, who seems to believe in the power of distraction, "what's Rosie really like?" Through clenched teeth, I tell her that I work for Oprah and that though I've never really said this to anyone before, "I guess the thing that makes Oprah so special to me"—they all lean forward—"is that she's never stabbed me in the arm with a sharp needle."
Next: Coping with diabetes—and needles
Dr. Goland decides I should be hospitalized till I get the hang of everything. I beg her to let me go home. "You'll have to test your own blood tonight and give yourself a shot of insulin," she says.
"I can do that," I say, almost certain that I can't do that.
"You'll have to call me at home tonight between 10 and 11."
"Okay," I answer, "if I need you, I'll call." She scrunches her brow. "I don't think you understand—if I don't hear from you, I'll be up worrying the entire night. You have to call."
Then she presents me with a secret weapon in my brand-new war. "This is Leigh Siegel-Czarkowski—you'll be spending a lot of time together."
I recognize her from my bloodletting.
"I'll walk you through the injection and blood test now, and then we can go over it again tonight," says Leigh, a 30-something nurse practitioner and diabetes educator, as she hands me her phone number. I leave the office at around 6:30 with a glucose meter, insulin pen, test strip, needle, lancet, and splitting headache. Only later do I learn that the office closes at 5.
That night I lay everything in front of me and phone Leigh.
"I don't think I can handle this," I say, attaching the needle to the insulin pen.
"That's how I used to feel," she says, and instructs me to pinch my thigh.
"Since I'm 15."
"Isn't there some horrible disease I can get that involves ointment?"
"Of course there is," she assures me, "but right now you've got this."
I sink the needle into flesh, push the button on the pen, force myself to count slowly to five until the drug is completely released, and pull the needle from my leg.
"I'm right here."
We listen to each other breathe for a while and finally she says, "Let's stick your finger now so you can call Dr. Goland and say goodnight."
First thing the next morning, I'm back in Leigh's office—a place I'll be hanging out in every day for hours over the next three weeks. We'll also talk at least twice daily on weekends. After conferring with Dr. Goland, it is decided that I'll prick my finger to check my blood seven times a day and control my sugar with five injections of insulin a day. Needless to say, I am not part of the decision-making process.
I'm sent to an obstetrician a few doors down who, via sonogram, locates my baby's heartbeat and then reviews the long list of potential problems for a baby who's been marinating in sugar. Her definitive answer is that she won't know anything definitive for some time. Back at the center, I'm sent to nutritionist Kira Almeida for an eating plan tailored to my needs. I'm sent to Dr. Daniel Casper for the most thorough eye exam I've ever had. I'm sent to social worker Kari Plotsky for a head exam. Actually, Kari just wants to see if I feel like talking. I tell her I really don't, then proceed to talk for the next hour and a half.
A couple of weeks go by. I know everyone and they know me. Needles, carb counting, weighing and recording every bite of the three small meals and three small snacks that I consume at roughly the same time each day still don't come naturally, nor does willing myself to believe that I'll have a healthy baby—but I do it nonetheless. Dr. Goland checks my blood pressure, and in the peppy cheerleader style I've come to cling to pronounces me "completely amazing."
"Completely amazing people don't let themselves become diabetic," I say.
Dr. Goland shoots me the have-I-taught-you-nothing? look and pulls up a chair. "This is not your fault, Lisa."
"C'mon," I say. "I've stopped going to the gym, I've put on weight, I've—"
"Time out," she says. "Diabetes is a genetic disease. And as for being overweight, that's one of the most inheritable conditions we know of. Almost as much as having blue eyes."
"Okay," I reply, "but you've gotta admit that there's an environmental component to all this."
Next: How genes play a role in diabetes
"Clearly, there is. But in most cases, without the genes you don't become diabetic. You could weigh 400 pounds, but if you don't have the genes, chances are your blood sugar would be normal. And," she continues, "some of the things that can trigger diabetes—age, stress, high fever, even certain medications—antagonize the effect of insulin. Someone could put you on prednisone for poison ivy and your blood sugar goes up, or you could be a really conscientious exerciser and hurt your back. It's the combination of pain and the fact that you're no longer exercising that can raise your blood sugar. I see that kind of thing once a week here. You just can't control every factor. So it's never exactly the patient's fault." She sees my doubt but plows ahead. "This is a disease where there's a huge amount of guilt and blame. Angry wives are always coming in here pointing to their husbands and saying, 'If he'd just taken care of himself, this never would've happened.' That's actually incorrect. It might not have happened at the time it happened, but it would probably happen eventually."
My lips say, "I suppose," but my eyes are glued to the scale across the tiny room.
"I think it's a little unfortunate that we believe eating is completely an issue of free will. It's not. Food intake is carefully regulated. It has to do with survival of the species. There are important circuits in the brain that are hardwired to direct how much we eat and when we feel satiated, and it's increasingly clear that there's a derangement, probably an inherited derangement, in the circuits of a person who struggles with weight."
And here I thought it was my needle phobia and constant weeping that would convince her I was deranged. "Now," she continues, "this isn't to say you couldn't go on a diet and lose weight after the baby is born—you could. It's just extremely hard to keep it off when the circuits are altered and your body is telling you you're hungry. It's also much easier for some people to gain weight. And that's their genes talking again. The thing is, if you really pay attention and you're willing to be a little hungry and exercise regularly, your genes are not your destiny."
"It's all so hard," I say.
"If it were a simple matter, nobody would be diabetic or overweight," the doctor agrees. But the good news is that I've got patients who are quite overweight—even after they take off ten or 15 pounds, they're still overweight by anybody's standard, especially their own—but through that little bit of weight loss, their blood sugar is now normal.
"They always say to me, 'What are you so excited about?' But that's what I want people to understand: For your long-term health, the difference between having a blood sugar of 100 versus 200 is enormous, and often it's those ten pounds that change everything. Diabetes is a chronic, progressive disease, but it can be staved off for years. And that's huge!"
I vow never to touch spaghetti carbonara again.
"People who struggle with diabetes still have to live in the real world. It's unrealistic to tell someone they can never have the good stuff. If there's something you love to eat, I want to make sure you can still eat it from time to time. It's impossible to always be perfect. You have to learn what your blood sugar levels are supposed to be and keep them within those limits 80 percent of the time—shoot for a solid B; the other 20 percent is a quality of life issue."
Two years later, my quality of life no longer involves shots of insulin, and I check my blood only randomly every few days. I lose weight, gain some back, and try to be kind to myself in the process. Dr. Goland tells me that my latest hemoglobin A1C is at 5.7—perfectly normal. "So does this mean I'm no longer diabetic?" I ask hopefully.
"I actually discourage my patients from thinking they're cured. The real question is, Do you have well-controlled diabetes or poorly controlled diabetes?" Mine is well under control, she tells me. And so I continue to eat a lot of vegetables, some protein, and an occasional dish of spaghetti. I walk home from the office at a fairly brisk pace two or three evenings a week, but the secret to my fitness program involves chasing after a sticky little toddler with a voracious curiosity and a mind-boggling level of energy. It took a village, but on April 26, 2003, Julia Claire Labusch was born perfect and pink, healthy and happy—the most delicious sugar substitute I've come across.