I always imagine that diabetics who work in offices have a relatively easy time dealing with low blood sugar. If they start to feel shaky or sweaty, they can get up, go to the bathroom, test, and then return to their seats–perhaps drinking some juice or munching on chocolate if they did in fact have a low blood sugar reading. The diabetic could be so inconspicuous that his or her coworkers might be completely unaware that the person sitting one cubicle over has a medical condition at all.

I work as a cashier in a large bookstore, and I can never be quite so casual or unobtrusive about managing my diabetes. I’m often the only person working at the register; if I slipped away for five minutes to test my blood sugar, I would come back to find a line of customers tapping their feet and calling out: “Where is everyone who works in this store?”

When I was first hired, I explained to my manager that I had diabetes and that I might sometimes need go downstairs to my locker and get my diabetes kit if I felt low. (I could have kept my kit at the register with me, but I knew it wouldn’t pleasant for the customers to see their cashier suddenly turn aside and jab herself with a needle.) My manager was completely understanding. “Whenever you need to test your blood sugar, just tell one of the supervisors and they’ll find someone to cover you while you go downstairs,” she assured me.

But this process is never as straightforward as it sounds. The supervisors roam the store helping customers, and are rarely close enough to the registers for me to ask permission to go downstairs in person. This means I have to page them through the headset, which relays my request not only to my supervisor, but also to all the other employees in the store. For this reason, I try to avoid mentioning diabetes outright. Instead, say something like: “Could I, uh, run downstairs for few minutes?”

My wording will then make me worry that the supervisor will think I only want a ten-minute break. I’m allowed one off-the-clock ten minute break per shift, and in normal circumstances I try to wait for this treat as long as possible. If I interrupt my routine to go downstairs to test my blood sugar only to find that I have a perfectly normal reading, I feel that I’ve cheated myself out of my break as well as bothered my supervisor for no reason. This will sometimes lead me to postpone asking to test my blood sugar even if I do feel low. This morning, for example, I suddenly noticed my hands shaking about an hour into my shift. Instead of asking for permission to go downstairs and test, I told myself that I was imagining things. When I finally did test, my blood sugar was 56. After wolfing down a clementine, I ran back upstairs, still jittery probably more than a little vague with the customers.

I know my difficulties with diabetes at work are small and often the product of my own over-analysis. But many people do have trouble reconciling their work with the day-to-day challenges of diabetes. I can imagine how hard it would be for a teacher with diabetes to suddenly have to leave a classroom of recalcitrant kids, or how hard it would be for a lawyer to walk out of a meeting with a client. What do other people do when their work is interrupted by diabetes?

A friend of mine recently happened to run into a woman she hadn’t seen in a long time. The other woman had lost weight, and my friend complimented her on how slim she looked. The woman replied: “Well, you know, I was just diagnosed with type 2 diabetes.”

My friend was shocked, and expressed her sympathy. Still, she couldn’t help also thinking: Wow, I wish I’d get diabetes if it would make me look like that! Immediately she felt guilty. Of course she didn’t really want to have diabetes–how could such a thing have occurred to her?

To me, this yearning for a life-changing diagnosis is understandable. I’ve heard people express similar wishes before; after finding out that my brother has celiac disease, another friend told me she half-wished she would be diagnosed with the disease, too, so that she would be forced to stop eating wheat (which she considered an unhealthy grain). I think that many of us would like to lead healthier lifestyles but postpone doing so indefinitely. We long for an official diagnosis because we feel it would give us the extra little push we need to get on the right track.

For many people with type 2 diabetes, an official diagnosis can really be a “blessing in disguise.” Knowing the seriousness of your condition can be an inspiration for change. And if type 2 diabetics continue to diet and exercise, they can potentially not only rid themselves of diabetes but also simply become healthier than they were before being diagnosed.

The problem is that it’s hard to maintain the vigilance that a diagnosis first inspires. Imaging that a diagnosis will enforce immediate and permanent change makes a pleasing narrative, but real life doesn’t always follow such a smooth trajectory. When I was first diagnosed with type 1 diabetes, I counted my carbs and calculated insulin doses meticulously. I even made a chart to record my blood sugar at different points in the day. But as time went on and the shock of my diagnosis wore off, I started to get more lax–neglecting my chart, estimating the amount of carbs in a meal instead of measuring it exactly. I realized that the effects of any “wake-up call” don’t necessarily last forever. A doctor’s pronouncement doesn’t force you to change your lifestyle. Ultimately, that change depends on your own determination–just as it did before you were diagnosed.

And in the case of celiac disease, the diagnosis itself might not require you to be all that healthy. It’s true that a person with celiac disease shouldn’t consume wheat, but gluten-free substitutes for wheat-based products (like gluten-free bread, crackers, and cereal) often use corn flour. Considering the amount of corn and corn starch that most Americans eat on a daily basis, it hardly seems healthy to add even more to one’s diet. And while someone with celiac disease shouldn’t eat gluten-contain unhealthy foods like cake or cookies–or Krispy Kreme Doughnuts!–they can still have their fill of most potato chips and ice creams.

So I guess the moral of my post is… be careful what you wish for. Being diagnosed with type 2 diabetes or celiac disease isn’t necessarily a blessing in disguise, although I admire people who have the tenacity and willpower to turn it into one.

I was nervous about the second week of my trip, which I spent in Estonia. For the first time since being diagnosed with diabetes, I was completely on my own.

I took a plane from Riga to Tallinn, Estonia’s capital. From Tallinn, I took a bus and a ferry to Saaremaa, an island off the western Estonian coast.

Saaremaa is Estonia’s largest island. The land is mostly flat, punctuated by meteorite craters; the largest crater, known as Kaali Lake, is almost circular and filled with water. The one town on Saaremaa is Kuressaare, which is made up of small limestone buildings constructed in a neoclassical style. At the center of the town is a medieval castle built by German crusaders. My great-great-grandparents owned a hotel in Kuressaare, and family legend has it that my great-grandfather worked as a scribe in the castle.

At the turn of the century, Saaremaa was already popular with summer visitors, many of whom came to take the mud bath “cure.” During Soviet Occupation, access to the island was restricted because of its proximity to the western border, but after Soviet Occupation ended, Estonians (as well as tourists from other countries) were thrilled to return to their favorite vacation spot.

Although spas have taken the place of the old mud baths, Saaremaa still inspires a culture of health-conscious visitors. People bike or walk the nature trails, and swim and play sports on the beach behind the castle. I even saw some kids canoeing in the castle moat.

View of the moat from the castle walls

I spend a lot of time walking in Kuressaare–hiking around the castle walls, going down to the beach, exploring the town and trying to form a mental picture of its layout. My new Lantus dose, which I had lowered during the first part of my trip in Riga, continued to work well.

A walk around the castle

Saaremaa’s castle now houses a museum with exhibits about the history and wildlife of the island. One of the small buildings outside the castle has been converted into an Archival Library, and it was here that I did most of my research. The people who worked in the Archival Library went out of their way to help me–translating documents from Estonian into English and taking me on a tour of the town to show me the places where my ancestors had lived and ran businesses.

The Archival Library, right next to the castle

One day as I was wandering in the museum, I happened to meet a Canadian family of Estonian descent. (They kindly offered to translate an Estonian placard for me.) I later had dinner with them at La Perla, a fantastic Italian restaurant in Kuressaare owned by an Italian-American. When she found out that I had diabetes, the college-age daughter in the family began telling me about a friend of hers who also had type 1 diabetes. This friend once got a massage and felt so relaxed while driving home afterwards that she didn’t realize she had low blood sugar and ended up getting into a terrible car accident (although she wasn’t badly hurt).

I wasn’t planning on getting a massage, but I was worried about going low in the middle of the night. What would happen if I became unconscious and no one noticed? The more I thought about it, the more irresponsible I felt for not having altered anyone about my diabetes. Finally, I decided to tell the husband and wife who owned the hotel where I was staying what to do if my blood sugar went too low for me to deal with it my myself. It was definitely the most awkward moment of the trip; I had felt guilty keeping my diabetes secret, but I also felt guilty burdening someone else (especially someone I hardly knew) with responsibility. Immediately after I’d finished my explanation, I tried to reassure them: “But of course that won’t happen, it’s never happened to me!” And luckily, it didn’t.

At the end of my trip, I got to spent one day in Tallinn with an Estonian architect and her family. Tallinn has a fairy-tale-like medieval old city constructed on a hill overlooking the Baltic Sea. The architect’s office is in one of Tallinn’s medieval buildings, and I was stuck by the casualness with with she and her colleagues inhabited the space.

I really enjoyed reading Elizabeth Snouffer’s article “Eating Abroad with Diabetes–Hong Kong,” Catherine Price’s interview with world traveller Bridget McNulty, and Catherine’s posts  describing her own trips to Tokyo and Hawaii. So I thought I would follow the trend and write about my own first experience traveling with diabetes.

This summer, I went on a two-week trip to Estonia and Latvia to do research about my grandfather’s family. I had originally been given a grant to do this last summer, right after I had graduated from college, but then I was diagnosed with diabetes in early July. At that point, I couldn’t imagine traveling to a foreign country–I panicked even when trying to estimate the amount of carbohydrates in a Cosi sandwich. Luckily, the people at Penn who had provided the grant were understanding, and allowed me to wait a year before taking the trip.

I’m convinced that a major reason why Estonia and Latvia aren’t bigger tourist destinations is because they were behind the Iron Curtain, and so remain unknown to many Americans. They are both beautiful countries. I spent the first week of my trip in Riga, the capital of Latvia. Riga’s medieval old city is surrounded by rings of parks, constructed after the city’s medieval fortifications were razed in the late 19th century. Beyond these parks is Riga’s truly unique feature–a sprawling art nouveau district that UNESCO has declared a world heritage site. You can walk for blocks and blocks and only see incredibly rendered art nouveau facades.

One of Riga's many parks

Art nouveau architecture...

Before World War II, Riga was home to a large Jewish population that included my great-grandparents and their children. By coincidence, I found out that the hotel where I was staying was in the same neighborhood as the apartment buildings in which my great aunts and uncles lived. I walked to each one and took photos–the building in which my great-uncle Isak lived is now a Ramada Inn!

The Ramada Inn

I also got to see some of Latvia’s countryside. For two days I went to Sloka, a town about an hour away from Riga by train. Here, my great-grandfather’s family once owned a farm and raised horses. Architecturally, Sloka is now an incongruous mix of small wooden houses and looming Soviet-era structures. Although quite a few of the Soviet-era buildings are crumbling and dilapidated, many of the town’s inhabitants have no other option but to continue living in them. As I took the train back into the city, I looked out the window at the fields passing by and caught glimpses of people picking flowers to make into wreathes to wear on St. John’s Eve the next day.

Sloka

After all my worrying, my diabetes-related challenges in Riga were few. Since I was only going to be traveling for two weeks, I brought all my supplies with me, in addition to prescriptions from my doctor in case I misplaced the supplies I had and needed to buy more. (I’m happy to report I never did.) My parents, who were curious to see the places their ancestors had lived, came with me for the first week of my trip. It was reassuring to know that, in case of an emergency, I would have two people with me who knew what to do. In addition, many people in both Latvia and Estonia are at least reasonably fluent in English.

Unlike some of the other ASweetLife travelers, I didn’t do anything especially physically strenuous. But I was walking all the time. Our hotel was half an hour away from the Riga’s center, we’d inevitably make the trip back and forth more than once a day–retrieving maps, going out to dinner, etc. And once we reached the city center, we would have to walk somewhere else. It felt great to get so much exercise without even trying, but then my blood sugar started to go low more and more frequently. Finally, I decreased my dose of Lantus, and the problem was solved.

I’ve continued to think about a topic from Oprah’s show last week “Diabetes–America’s Silent Killer,” that I didn’t mention in my last post: the ways in which type 2 diabetes can insinuate itself into the culture of an ethnic or racial group.

We learn how to eat as children. If our parents eat unhealthily, and later develop type 2 diabetes because of it, chances are that we will also become diabetic if we continue to eat our childhood favorites. One of Oprah’s guests mentioned that many people who have parents with type 2 diabetes feel resigned to the idea that they will inevitably develop it, too. They won’t even try to take the steps of exercising or eating healthily that would prevent this from happening.

The culture of type 2 diabetes isn’t just created by one’s immediate family, though; ethnic and racial identity can also play a part. At one point in last week’s episode, Oprah focused on a church congregation from Ohio, all of whom were pre-diabetic or diabetic. They were also all African-American. After the camera panned in on french fries and pork chops sizzling in vats of oil, Dr. Ian Smith, a guest on the show, commented that eating such foods was both a direct cause of type 2 diabetes and an integral part of African-American culture. Noting some of the congregation’s reluctance to give up fried foods even when presented with facts about their potential harmfulness, he explained: “Habits are tough to break, especially for African-Americans when their habits are around food, which is like a culture for them . . . Transgenerationally, we’ve eaten this way, and African-Americans take this ‘heels in the ground’ approach” (quotation from Oprah.com).

Of course, African-Americans are not the only group to consider unhealthy foods a staple of their culture. When I think of Italian food, I immediately picture pizza and pasta. Main courses in Chinese-American cuisine can be flavored with sauces containing as much sugar as desserts. Ashkenazi Jewish favorites include bagels, blintzes, and latkes not to mention toppings like cream cheese and sour cream. Naturally, most cultural groups have their healthy dishes as well. But the popularity of the unhealthier foods–the way they have pervaded mainstream American culture–shows that there is something about every cultural group’s fattiest, most carb-laden foods that makes them the hardest to resist.

What does it take to break out of eating patterns that have been engrained in us by our parents or culture? Dr. Smith, who is African-American, said he was brought up eating similar foods to those consumed by the congregation in Ohio. Since then, however, he has changed his lifestyle and is now the dietary and medical expert for the 50 Million Pound Challenge. To me, this is an inspirational example of how willpower can overcome habit. Although it’s tempting to legitimize our food cravings by looking back to our childhood or even cultural traditions, it won’t really help us in the long run. That is, not unless we also consider the circumstances in which these foods were originally consumed: not as an every-day staples, but as treats to compensate for times when food was scarce.

Yesterday’s episode of the Oprah Winfrey show, which focused on diabetes, was subtitled “America’s Silent Killer.”

Diabetes is a “silent” killer, according to Oprah, because so many diabetics are either unaware that they have the disease, or simply live in denial of the seriousness of their condition. Unlike most other life-threatening diseases, diabetes often does not pose an immediate danger to those who have it. This allows diabetics to have a “I’ll change tomorrow” rather than an “I’ll change today” approach to managing diabetes.

But managing diabetes isn’t just about taking insulin or getting more exercise. It begins with doing what one of the doctors on the show dubbed “emotional homework” –psychologically coming to terms with the seriousness of your condition.

The show forced viewers to confront the reality of diabetes in visual terms. Dr. Oz showed a large-screen animation of effects of diabetes on the inside of the human body. To illustrate the amount of sugar the average American eats over the course of one year, he unveiled a stack of sugar bags weighing 150 pounds. He then brought out a bowl full of shards of broken glass, and explained that sugar acts like pieces of glass on blood vessels. The cuts made by sugar can cause loss of sight or lead to heart attacks.

The show encouraged viewers to comprehend diabetes on an emotional level by relating the personal stories of different diabetics. The episode mostly featured type 2 diabetics, for whom diabetes was more an issue of “attitude” than anything else. The audience met the adult members of a church in Ohio, every one of whom was pre-diabetic or had type 2 diabetes. The church culture involved eating copious amounts of fried and sweet food, cooked and served by the church’s own pastor and his wife. Many of the church members were reluctant to change their habits. One woman who had been diagnosed with diabetes hadn’t tested her blood sugar since December. Nevertheless, as Dr. Oz pointed out, many of those with type 2 diabetes could reverse their condition if they simply changed their rituals concerning food.

The story I found most moving was that of Laureen, a woman in her forties who had been diagnosed with type 1 diabetes as a child. Growing up, she drank soda and ate cake regularly, reasoning that as long as she took “a little insulin,” she would be fine. It wasn’t until she was much older that she was forced to realize that taking insulin was not nearly enough to combat her condition. Complications of diabetes forced her to get a kidney transplant and have one of her legs and a part of her other foot amputated. In footage of her in the hospital, Dr. Oz asked Laureen why she thought the almost 60 million Americans who are pre-diabetic refuse to acknowledge the precariousness of their situation. Laureen replied: “Because they feel okay now. When it finally hits you, it’s too late.”

Laureen’s difficulty as a younger adult wasn’t that she didn’t understand the facts of diabetes intellectually. In fact, before her amputations, she had worked as a nurse. Her problem in dealing with diabetes was that she couldn’t come to terms with it emotionally. Her first reaction to hearing she had to undergo a treatment was “this can’t be me.”

Laureen’s story resonated with me because I often have the same attitude towards eating sweets or taking insulin that she did. Even though, as a type 1 diabetic, I will never be able to reverse my diabetic condition, I know that by doing some “emotional homework” and improving my mental approach to diabetes, I will be on my way towards managing it much better.

One of my friends’ fathers, who is diabetic, will uncap a syringe before every meal so that his whole family can see the needle glint. He then holds it up to the light while slowly drawing up his insulin. As he finally inserts the needle into his stomach, he cries: “Ow, ow! Oh, it hurts!”

Few people would ham up the routine of taking insulin this much. Still, after chuckling over this description, it raised a question for me. What is “diabetes etiquette?” Are there rules of politeness we should observe when giving ourselves injections of insulin?

It is my guess that most people who have diabetes feel comfortable openly giving themselves insulin injections at home. Our families get used to it. By the time I was diagnosed with diabetes, my brother had already known he’d had it for nine years, and my parents were fairly inured to seeing him give himself shots. Now there’s rarely a pause in conversation when he or I start to draw up our insulin. (We both do try to be unobtrusive about it, though, so it’s as painless as possible for our parents!)

When you’re out in public, the situation gets trickier. First of all, whipping out a syringe and vial is tantamount to admitting to everyone present that you have diabetes, or at least some medical condition. I’m not intent on keeping my diabetes secret from other people, but I’m not exactly eager to shout it from the rooftops, either. When you’re in a public space, you also have to consider the feelings of the people around you. Many people are truly bothered by the sight of a syringe, and you don’t want to unknowingly make someone feel ill.

I do often give myself insulin injections in public despite my conflicting feelings about it. Sometimes this is just a matter of logistics, or my own laziness. (If you’re eating by yourself, how can you get up to give yourself a shot in the bathroom if your food or coffee is already on the table?  And you don’t want to give yourself a shot before you order, because you don’t know how long the food will take, or even necessarily what you want to eat…) But I also find that in busy places, people don’t pay much attention to me when I give myself a shot–or at least, they don’t seem to–as long as I’m discreet about it. Giving yourself a shot in front of friends or acquaintances poses other problems. When I’m with people I don’t know very well, I’m reluctant to give myself a shot simply because I don’t want diabetes to be the first thing they associate with me. Most of my good friends say that seeing me give myself a shot doesn’t bother them at all. But then, they could just be following their own rules of etiquette.

Eating can never be a mindless pleasure when you have diabetes. First, there is the physical pain of every insulin injection (I’m old-fashioned and haven’t yet switched from syringes to a pump), although that’s not really much worse than a pinprick. Perhaps more annoying is the need to constantly count your carbs. This is easy enough when you’re eating something that you’ve prepared yourself, but harder when you’re eating at a restaurant or someone else’s house. You can never just reassure yourself: Well, I’m at a party so for once I’m just going to pig out and not worry about it…

Still, as always, things could be worse. My brother, in addition to having diabetes, also has celiac disease. Celiac disease, like type 1 diabetes, is an autoimmune disease, and in fact people with type 1 diabetes have a greater chance of developing celiac disease and vice versa. People with celiac disease have intolerance to gluten, a protein found in wheat, rye, and barley. This means they can’t eat bread, noodles, cake, cookies…the list goes on and on, and even includes products like soy sauce (no Chinese food!), some lip balms, candies, and ice cream, and even some medicines. Celiac disease isn’t the same thing as a wheat allergy–eating a miniscule amount of gluten could have the same adverse effect on a person with celiac disease as eating a larger amount would. So while that fruit platter may look gluten-free, if someone who’s just eaten a cracker accidentally touches a strawberry, a person with celiac disease can’t eat the strawberry. When people with celiac disease eat out, they don’t simply have to worry about taking the right insulin dose to cover the food they’re eaten–sometimes they can’t eat anything at all.

I have some first-hand experience of how restricting the gluten-free diet can be. Before my freshman year of college, I was tested for celiac disease. The results came back inconclusive and my doctor suggested that I try the gluten-free diet. For my first year of college, I had to eat in a dining hall that catered to students with special dietary needs, rather than in the dining hall where the other students in my close-knit residence ate. For the day-to-day aspect, I have to say that I’d rather have diabetes than celiac disease.

Does anyone reading this have celiac disease? Which do you find easier to deal with–diabetes or celiac disease?

Oh, and if anyone needs recommendations for gluten-free food or gluten-free restaurants in the Philly area… just let me know!

My brother was diagnosed with type 1 diabetes when he was eleven and I was thirteen. In terms of health, he’d already had a bad year, including a ruptured appendix that had prompted our family to rush him to the emergency room. Now we were making a second trip to the emergency room in the middle of the night. As we waited outside his room in the hospital, I asked my mom: But what does having diabetes mean? What will he have to do?  All she could volunteer was: “I don’t know, Bec. I guess he won’t be able to eat anything sweet anymore…”

I couldn’t image a life without sweets. No ice cream, no birthday cake, no trips to Mapes 5 &10  to buy fifty cents worth of candy after school, no popovers and jam at the Jordan Pond House while we were on vacation on Mount Desert Island….

It turned out, of course, that my brother would be able to eat some sweet things. Still, the nurse explained to us, my brother would have to monitor his diet as well as take insulin. For the next nine years, watching my brother check the bag of a package of food, fill up a syringe, and inject insulin reminded me of how frustrating his condition could be for him, but also of how glad I was I didn’t have diabetes myself.

Then, while in college, I began to notice that after eating a big meal, or something very sweet, my pulse would increase to the point where I felt nauseous.

My brother’s immediate thought was that I might have diabetes. “Why don’t you test your blood sugar, just in case?”

At first I refused. I had an inkling he was right, and that made me all the more anxious to avoid finding out for sure. When I finally did cave in and borrow his meter, my blood sugar was 103–well within the normal range. This provided me with reassurance for a few years. When I felt sick after eating a meal, I would tell myself: But it can’t be diabetes. You tested your blood sugar before, and it was fine.

In the summer of 2008, I had been given a grant from my college to do research in Estonia. I originally planned to take the trip immediately after I graduated in the spring, but I finally decided to wait until late summer. A lucky choice. One day in early July I began to feel especially sick. This time I needed no extra encouragement to test my blood sugar.

But the meter wouldn’t give me a reading. First it repeatedly said “Error,” then: “High.” “High.” “High.”

“I think we’d better go to the emergency room,” my mother said.

Like my brother, I was diagnosed with type 1 diabetes. I stayed in the hospital for a few days, but I left more quickly than many patients in my circumstances. After watching my brother count carbs and calculate insulin doses for so long, it wasn’t too hard for me to catch on to the routine. My brother was full of support, and my mom could also give me advice–she had helped my brother to manage his diabetes for years when he was young, and now she knew almost as much about it as he did. For my first few check-up appointments, my doctor complimented me on my tight control of my blood sugar. And this past summer, I was able to take that trip to Estonia–a wonderful experience which I am sure I’ll describe in more detail later on.

The challenge for me now is to avoid becoming blase about diabetes. The downside of having seen my brother deal with diabetes for so long was that I also saw him in his weaker moments–popping an M&M into his mouth without taking insulin, eating first and testing his blood sugar later. Once the initial shock of my own diagnosis wore off, it didn’t take long for me to think: hey, this is no big deal. I began to estimate the portions of food I ate instead of measuring them, and eat larger portions of desserts (which, even if you take enough insulin, is never a way to maintain a steady blood sugar level).

I’ve decided to call my blog Checking Reality for a number of reasons. It took me a long time to realize that I have diabetes, and I still often feel tempted to ignore the real dangers diabetes poses. But, like all other diabetics, I can only avoid the reality of the situation for so long. My day is punctuated by literal reality checks–tests of blood sugar–that force me to confront the truth of how well I’ve been managing my diabetes from meal to meal. I hope my blog title also has a more cheerful meaning. An important part of checking reality is keeping diabetes in perspective; while diabetes will always be a factor in my life, I shouldn’t let it overshadow everything that still makes life wonderful.