Jane Kokernak teaches in MIT’s Writing Across the Curriculum Program and lives with her family near Boston. In 1992, as an adult, she was diagnosed with Type 1 diabetes; in 2003, she switched from multiple daily injections to an insulin pump and has stayed with it. Her essay on diabetes and sexuality, “Tethered to the Body,” appeared in Bellevue Literary Review’s special issue on disability in 2008 and was republished by ASweetLife in 2010. Other of Jane’s essays have appeared in Equally Shared Parenting and PMS poemmemoirstory and articles on teaching writing in Tomorrow’s Professor. Read full bio

DBlog Week: No Colleagues with Diabetes

Today is the third day of Diabetes Blog Week. Its founder, Karen Graffeo, suggests that “now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes.” She asks: “What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?”

At M.I.T., where I work and teach, there are 11,380 employees, including faculty. There are 11,301 students. That’s 22,681 people in my community, and most of us are located on or around the Cambridge campus.

I know a lot of people at work, too. Of my friends and colleagues, I know people with a lot of chronic conditions and some with serious illnesses.

I don’t, however, know anyone at work who has diabetes, Type 1 or Type 2.

On the paved walkways among academic buildings, I’ve seen glucose test strips here and there, like Hansel and Gretel’s crusts of bread that leave a trail behind them. But I haven’t seen anyone test their blood glucose in the open.

I’ve told colleagues about my diabetes and insulin pump. People are interested. No one, however, has said that he or she has diabetes or mentioned to me a fellow employee who does.

Occasionally, I have worn my insulin pump on the outside of my clothes — loud and proud — rather than tucked neatly under my sweater or in my pocket. I want it to beckon others. It doesn’t.

Even though my brother Brian has Type 1 diabetes and my husband has Type 2, I do not have a friend or colleague in my day-to-day work life who injects insulin or wears a pump or counts carbs.

If 8.3% of the American population has diabetes (any kind), and 5% of that number has Type 1 diabetes, that means that as many as 1,882 people at M.I.T. have diabetes (any kind), and as many as 94 people may have Type 1. Like me.

Maybe 10 do. Or 5.

I don’t know any of them.

Through social media and people like Jessica and Mike, I know a lot of people online who have diabetes, but in my actual life I know very few. That is a lonely state.

I don’t know anyone with Type 1 whom I could have lunch with or go to the campus fitness center with.

I’d like to find my phantom colleagues or even students with diabetes. Where and how do I look?


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DBlog Week: As Compared to the Ideal Self

Today is the second day of Diabetes Blog Week. Its founder, Karen Graffeo, proposes: “Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.” Here is something I drafted back in November, when I was writing a poem a day.

Self Portrait

You never change, do you? Every morning, you stand
naked near the bathroom mirror. I try to look away, but
always in the minute before stepping into the shower
I look. The pale, un-firm flesh on your belly I see first.
The navel is like an eye that my eyes stare into. Around it,
the fat is mottled by insulin injections.

We cannot blame this on poor fitness habits or
our parents’ DNA. Or maybe we can: diabetes is
genetic. The old disappointments also show
themselves: the squared hips and dip between hip
and leg, the small breasts, the pubic patch, still dark.
There are no lines, no planes, no impressive angles. If
I had to draw us, I don’t know that I could find a reference
in geometry. No circle or oblong or rectangle would do.
Even the oval head is flat at the back when I study it in
two mirrors angled just so. Every day,

the familiar sight is still there, and I remain surprised
it has not changed overnight into the transmuted
image of me that I desire.

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DBlog Week: I Hate Paperwork and Phone Calls

Today is the first day of Diabetes Blog Week. Its founder, Karen Graffeo, proposes: “Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.” For me, fired up often means the long slow burn.

stack of my recent medical mail

I’m lucky. I have health insurance, and, except for the three months following my college graduation and until I got my first full time professional job, I always have had health insurance. My diabetes diagnosis in 1992 has never, to my knowledge, threatened my access to either health care or coverage although I have certainly done my share of worrying about it.

The complexities of the U.S. health care system, however, means that patients have paperwork to do and phone calls to make to coordinate their care, get referrals, and sort out billing questions. If a patient has a chronic illness like diabetes, the effects of our bureaucratic system is multiplied.

I was reminded of this recently when I got a form letter from the company that handles my prescription benefits. The test strips I use with the glucose meter, which is wirelessly connected to both my insulin pump and continuous glucose monitor, will no longer be covered after July 1. The insurance company is recommending that patients change to another brand of strips, which will be covered at the same level. If I change the strips, I realized, I have to change meters, which means discontinuing the continuous glucose monitor, which means less functionality with my insulin pump.

Alternatively, I imagined that I could stick with the strips I currently use and pay retail for them: $600 for a three month supply as opposed to $80 for a three month supply. That’s $2,080 more per year. If it comes to that, I imagine I’ll drop the CGM and stick with non-invasive home blood glucose testing.

The form letter sat in a pile of mail for at a few weeks. I knew I had to do something. Could I appeal? This morning I called the company that sent me the letter. I learned that, yes, there can be an appeal but (a) my doctor has to do it and (b) he has to wait until July 1, the day the coverage ends. “In the meantime,” the company rep asked me, “Can I process a refill? You’ll at least have three more months of these strips.” I said yes, paying $80 for strips and what feels like a little more time to figure this out.

I will ask my doctor to appeal. I made a note in my calendar to contact him around July 1, but after that the paperwork is up to him.  How much of his time and mental energy goes into dealing with issues of insurance and coverage for his patients with diabetes, as compared to interacting with them, listening to the health challenges they face, and advising them in being well and meeting their goals?

Or, if my doctor doesn’t have to make this call himself, how many people in a doctor’s office or clinic or hospital are employed to sort out these insurance matters? Is that cost less than what it would cost for, say, my preferred test strips? Is the total cost less than what it would cost to give all people in the U.S adequate health coverage, including the medications to sustain life and well being?

I have two other medical paperwork matters to figure out this week. I’ll pace myself and confront those, too. During the summer, I’ll have to revisit the as yet unanswered question about my test strip coverage. The overhead to having a chronic illness is prodigious, and I could take a nap just thinking about it. Most days, I’m at my limit with the blood glucose testing, meal planning, exercising, and overall self management. Then there is this other layer.


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Learning to Use My New MiniMed 530G with Enlite CGM system

It takes a while to make a change and learn something new.

Last spring I knew I was eligible, through my health insurance company, for an insulin pump upgrade after six years on the same one. I’ve been a loyal Medtronic user since 1993, so before making a decision, I compared the next generation Minimed with models by other makers and investigated continuous glucose monitors (CGMs).

Whether out of a comfort or a truly objective analysis, it’s hard to say, I stuck with Medtronic/MiniMed. One important factor, though, was a long talk with Carol, the Boston-area Medtronic rep, who demonstrated Minimed’s new system and showed me her own pump. Although I live in a big city and work for a university with 10,000+ employees, I do not know, in person, a woman with Type 1 diabetes. Carol couldn’t have known this, but our brief personal connection meant more to me than all the information that she and other manufacturer reps had provided. Here she was, representing lived experience.

Medtronic MiniMed 503G with Enlite CGM System

the MiniMed 503G with Enlite CGM arrives, in a bigger box

By the time I was ready to decide and place an order in November, the MiniMed 530G with Enlite CGM system was newly available. On the day it arrived in the mail, several boxes and folders inside one big box, I was excited. “My new pancreas is here!” I thought. Rationally, I knew that the integrated system was not passive: it still needed me and my brain in the control tower, so to speak. Yet how I felt is as though I were a pioneer, a first adopter of new developments in diabetes technology. I also believed (and still do) that I was re-committing to my own health and to taking advantage of resources that would help me manage my health well and for a long time.

The euphoria of beginning has faded, and I am still patiently climbing the learning curve.

The transition to the new pump came first. Before attending the classes at the Joslin Diabetes Center for the CGM, I wore the 530G for a few weeks. The insertion sets are the same, but the prompts in the user interface on the pump has been modified. For example, I no longer use the “Prime” function to change out an old reservoir and add a newly filled one (as I did with my old MiniMed pump), I use the “Reservoir + Set” function. There are other changes like this that make me stop for a few seconds and ask myself, “Is this what I want to do?” before proceeding. I am no longer on automatic.

The Enlite transmitter/sensor combo is itself diminutive in size, which made me anticipate that learning how to insert the sensor, connect it to the transmitter, and tape the whole thing down would be a breeze. It’s a different set of operations, with a different inserter, than the insulin infusion sets. I had to stop and think between steps. I also really needed Stacy, the nurse educator, and an instructional video and booklet to help me. Even though I’ve changed the sensor four or five times by now on my own, I need the booklet open in front of me to get the steps in the right order and with the right technique.

As an insulin pumper for more than 10 years, I have become speedy at changing out an old insulin reservoir and priming a new one; it takes me two minutes or even less if the needle goes into a soft spot on my flesh. The CGM set cannot be done in less than 20 minutes, if only because the transmitter needs to re-charge for that long before being initialized again. I only have to do this every six days (while I change the insulin reservoir set every three days), but there will be no rushing through this. I do it when there’s a pause in the day.

I’ve also made time in my life to learn this new technology. Joslin requires one initial and two follow-up appointments when learning the CGM. This training schedule was designed, Stacy told me, because they found at the Joslin that, if people had only one appointment, they would get frustrated with the CGM and give it up before really giving it a chance. When she told me this at my first appointment, I silently and smugly told myself that “I will be different,” but, guess what? I have been frustrated.

The new, unexpected challenge is coordinating my use of the blood glucose meter and the operation of the CGM, which does not measure blood glucose. It measures the glucose in interstitial fluid, and this is important to know because glucose levels in interstitial fluid lag about 30 minutes behind blood glucose. Only my blood glucose meter, which is part of the system, “knows” what my in-the-moment blood glucose is. And, furthermore, I need to make some decisions as to when I will use a blood glucose level as a calibration for the CGM. Two calibrations a day must be done; Joslin recommends two to four a day, with the ideal as four.

The best time to calibrate is when I know the level is pretty stable — that means early morning and end of day for me, and a couple of other times during the day when I haven’t just eaten or recovered from a hypoglycemic reaction. I’ve made some mistakes, and simply chosen “yes” when the meter, which wirelessly sends BG values to the pump, asks me if I want to use a blood glucose value as a calibration for the CGM. The result is that, instead of the BG meter and CGM getting in sync, the value might diverge by 100 points. Getting within 30 points of each other seems to be the goal.

What this has meant is that the CGM alerts have been waking me or interrupting me occasionally with flat-out incorrect numbers. It says I’m 243 when my BG meter says I’m a more reasonable 150. Conversely, it woke me once at night with a LOW BG alert of 69, and my meter check told me I was 120, which is also how my body felt.

There has been some benefits, though, on the learning path. It has woken me at night with its very insistent vibration to let me know my BG was a high 227. It was correct, and I would not have predicted this, having gone to bed at a smooth 111. (I blame it on a dinner that was high in both fat and fiber.) It has aroused me also with a LOW BG alert and been correct.

So far, the process has been equal in frustrations and benefits. I haven’t yet turned on the new functions of the pump/CGM combo, the prediction alerts or the threshold-suspend, which Medtronic claims is the first step to an artificial pancreas and closed-loop system. Those come next. I am intimidated by threshold-suspend (it’s optional), but the prediction alerts are a major part of why I chose the system and to “go CGM” at all.

There are many other things in my life I would rather be doing or other thoughts or problems I’d like to fill my head space with, other than learning how to use the pump/CGM system. Recently, I told the editors at Sanofi’s Discuss Diabetes that in the wake of my celiac disease diagnosis, I had to “make time for change,” to reconsider my diet, subtract old foods, and add new ones. It took both patience and clearing the day’s To Do list, to some degree. I am doing the same with the CGM, making time for change. I am still at the beginning; we have a ways to go.


Transition to a Gluten-Free Diet

homemade + gluten-free

Yesterday I took down the artificial Christmas tree and moved it to the attic.  This morning my husband and I lugged a 110-pound boxed furniture kit from the minivan to the garage. Once it slipped, and in trying to raise it again to waist height, I felt a crimp in my back and then a crumple. So much for my can-do self image.

Later my husband texted me from work: “How is the back?”

I was in the car, having gotten back in it after a short trip to the grocery store. I replied: “Walking seems doable. The transitions between states are the challenge.” By states I meant sitting and walking, and by transition I meant folding myself into the car seat and then later unfolding myself out of it.

There are many states of being, though, and many ways to be in a transition between them. Since my diagnosis of celiac disease in August 2013, I’ve been in a dietary transition. Before, I could eat anything within reason, as long as I counted carbohydrates to get the insulin boluses right on my pump and chose foods that gave me sufficient nutrients and energy.  Now, I’m choosing my carbohydrates more carefully, avoiding all of them that contain any wheat, barley, or rye or ones packaged or made in a plant that  processes wheat, barley, or rye. In this transition, there has been a lot of subtraction, or simply not eating things I used to eat.

Subtraction can lead to a feeling of deprivation, as many people with diabetes, both T1 and T2, know. Even when I am eliminating certain foods for a positive motivation — improved health  — the lack of a favorite or simply habitual food makes me feel sad for myself, as though all the other children are getting the presents and I am not.  Food is fuel, but food is more than fuel. It is community; it is pleasure.

More recently, as I’ve gotten over the shock of the diagnosis and the doctor’s prescription to “avoid gluten 100 per cent,” I’ve been finding new foods and some substitutes for old foods. For example, at the cafe where I used to buy a lunchtime sandwich, I now regularly order their chopped Greek salad with white beans and chicken. For sandwiches, I’ve discovered Udi’s bread. For the occasional sweet, Lucy’s cookiesBob’s Red Mill sells oatmeal packaged in a plant that does not process wheat. I love oatmeal, and I’m so happy I can eat it again for breakfast with a banana, chopped nuts, cinnamon, and, yes, sugar.

As a writing teacher, when I tell students about the use of transitional words or transitional phrases in their academic writing, I explain that a transition is a bridge from one sentence to another, one paragraph to another, one idea to another. The writer usually knows the relationship between sentences or ideas, so the bridge is for the reader’s experience.

In the many health events or changes that people with chronic illness will experience in their lives, we need to identify those transitions and get advice and find ways to smooth the way from one state of being (say, injecting insulin) to another state of being (using an insulin pump). To me, it’s both painful and disruptive to hear the words that “Everything changes at this moment,” without some guidance in making it through that change. If we aren’t offered guidance, we must ask for it or look for it.

I’ve had an hour of unfiltered advice from a dietician on how to eat gluten-free. Was it a bridge? Not really: more like a truck load of info dumped into the gap of my knowledge. I felt more overwhelmed by it than helped along.

More helpful and reassuring have been the tips from people who have celiac or know others who do. A few of these I know in my real life, and many of them I have found online, through web-searching and also Twitter. A hashtag and the term “gluten free” (#glutenfree) have been a signpost for research articles, health tips, and, most of all, reader-tested recipes, like one I made today for vegan blonde brownies with chocolate chips (pictured above), which are chickpea- and not flour-based.

chickpeas are gluten-free carbs and a good base for a sweet treat

I still have a lot to learn about cooking and eating the gluten-free way. A colleague whose wife follows a gluten-free diet has encouraged me, for example, to bake my own bread and pizza crust. Still finding my way to my new diet, I’m not ready yet for that degree of kitchen ambition and experimenting. Nevertheless, I need a treat that tastes yummy — like something that I would actually eat — to feel optimistic that this new diet and state of being is one I can live in every day for the rest of my life.

Are my homemade gluten-free chocolate chip blondies like a ‘real’ cookie from my old diet? They are, and they aren’t. They’re sweet and delicious, but because the recipe lacks butter and sugar (it uses peanut butter for fat and agave for sweetener) the texture is less crystal and more purée seeming.  I am getting used to new tastes, as well as old foods (beans) with new starring roles in my diet. Some days it’s hard, especially when I stand in front of a glass bakery case or see someone at a party with a plate of crackers and cheese. (Oh, for a taste of Cheez-its and Carr’s Whole Wheat Crackers!) But with a gluten-free cookie or bowl of oatmeal or corn tortilla taco, I find my interest in food rekindling as I leave my old diet behind.

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Left Out of a World Obsessed with Food

I stand on the outside, looking in.

That’s how I would describe my feeling, as a person with Type 1 diabetes and now celiac disease, in our food-obsessed culture. Outside, looking in.

Bakery Window Display, Vancouver Bites! (2010)

A couple of weeks ago, I went to a staff meeting at work, scheduled for noontime. Typically at these things, someone orders a meal as a courtesy.  It really is a very thoughtful gesture, and the presence of food makes for a convivial meeting. With a fairly new diagnosis of celiac, I am still in a subtractive mode, focused more on what I can’t eat than what I can. In advance of lunch meetings, therefore, I mentally plan what I will eat and what I won’t. For this one I imagined there would be salad, and that I would eat salad, and if I got hungry later I could always have a banana or yogurt from the snack bar in my office building. I arrived at the meeting, ready for salad, and what I faced was a spread of pasta and bread: ziti casseroles, spaghetti and meatballs, and plenty of garlic bread. There were some sliced tomatoes, and I ate those.

Around me, people were enjoying their food and each other. I wasn’t sad. I didn’t feel unliked or neglected. But I wasn’t really with them, either.

It has become the norm that food is central to our lives, not simply as fuel, but as a great source of pleasure, community, economy, and, I dare say, competition. I am hungry, I want to eat, but I am not really part of that discourse. Who makes the best artisan bread or bagels? In these conversations — and, people, they go on all the time! — I am at a remove.

I have tried to find out whether T1D or celiac disease are considered “disabilities” under the Americans with Disabilities Act (ADA). At the most, I understand that it is ambiguous whether chronic illness is equivalent to disability. I’m not sure what I want from the ADA, but it’s not special food accommodations or status for my conditions. No one, beyond my family, is obligated to feed me.

But in my daily life — sometimes hour by hour — I am reminded that this world of food is not for me. And yet I must live in it, and be subjected constantly to the values of people for whom this world is designed. People with physical disabilities, for example, ones who get around in wheelchairs, may look at the built environment in a similar way. Design may make exceptions for them, like ramps and wide bathroom stalls, but these are add-ons to a building’s design; it never starts with difference or diversity in abilities.

Once upon a time, before illness, I was interested in food. I savored it. I overate at holiday dinners. In the 20-plus years since my diagnosis with T1D, however, I have become less and less interested. At the same time, people around me — some friends, some members of my family — have become more and more interested. And I find myself in the odd position of having to be sympathetic to and sometimes even cater to their food desires.

Thanksgiving Day will be celebrated at my house this year. I have a lot of control over what will be served, although it will not be reduced carb or gluten free. There will be the usual turkey, stuffing, gravy, potatoes, vegetables, dinner rolls, cranberries, and, oh!, those desserts. Plenty of carbs and gluten for all.

I will accommodate myself, though. I bought a gluten-free turkey (some brand-name poultry is injected with gluten for moistness and plumpness), a box-mix gluten-free stuffing, and a gluten-free pumpkin pie. I’ll have some of the potatoes and kale salad. My mother is bringing regular stuffing and pies for the normal eaters. (Thanks, Mom!) As others eat for deliciousness, I may be sitting there, counting carbs in my head, bolusing under the table, and wondering what all this food fuss is about.

Image credit: Bakery Window Display, Vancouver Bites! (2010) on Flickr via a Creative Commons license


Drinking from the Nutrition Fire Hose: First Steps at Learning the Gluten-Free Diet

 At the Massachusetts of Technology, where I work and teach, there is a well-known expression in our community about how it feels to be a student there. The educational experience is described as “drinking from the MIT fire hose.” There is so much to learn, and the faculty have a great desire to both educate and challenge students, but sometimes it may feel like too much.

On August 25th, I was diagnosed with celiac disease, a condition I previously knew nothing about. I started learning by studying the blogs, of which there are many. I found medical sites that explain celiac and the gluten-free diet. I wandered the aisles of a few grocery stores, looking for boxes and packages with gluten-free labeling and studying ingredients lists for the first time in years.

I remembered vividly when I was first diagnosed with Type 1 diabetes and had to learn anew how to eat, how to shop, how to cook. Overwhelming.

This week, I met with a nutritionist at the Joslin Diabetes Center in Boston, where I get my care. I think what I hoped for was an elegant, beautifully curated, and brief list titled something like, “Five Steps for Adjusting to a Gluten-Free Diet.” I did not get that.

The nutritionist and I talked for an hour. She was extremely knowledgeable about both T1D and celiac. She was also extremely generous with handouts. I accepted 10 of them and rejected a few more. (I just couldn’t — couldn’t! — tolerate an annotated bibliography of the best gluten-free cookbooks. I want one cookbook. Thankfully, my sister-in-law did some research and recommended one. That’s enough for now.) Here’s a list of the hand-outs, with the number of pages in each:

  1. Celiac Disease and Gluten-Free Guidelines (8 pages)
  2. Celiac Disease Resources (2 pages)
  3. Gluten-Free Guidelines: Meal & Snack Suggestions (2 pages)
  4. Celiac-Friendly Restaurants (6 pages)
  5. Special Foods Available by Mail Order and on the Web (20 pages!)
  6. T-Factor Fat Gram Counter (2 pages)
  7. Snack Ideas (2 pages)
  8. Glycemic Index List (1 page)
  9. Lunch or Dinner Ideas: Protein (1 page)
  10. Your Daily Protein Goals (1 page worksheet)


This appointment was Monday, and it is only now that I can bear to look through the handouts. I had enough to digest and absorb from my notes from my conversation with her, which included the advice to avoid cross-contamination of food at home by getting my own separate toaster. (What?! Are you kidding me?? This I did not say.)

I am still processing all of this. Have I taken any action? Yes, some. I have done a better job of packing myself food to take to work because, as of now, I feel stranded without it. I ordered the cookbook title my sister-in-law discovered, and I am looking forward to some weekend baking. With a work friend, I went to a new dining hall on campus that has offerings for every diet, at various stations, and left feeling both satisfied and virtuously gluten-free.

The nutritionist was very helpful. The blogs are very helpful. No doubt the handouts and the books I eventually read will be helpful, too. However, right now, the onus is on the patient to sort her way through the massive outpouring of information that is not very well selected or focused. It may provide good coverage, but it also overwhelms the target (that is, me). A year from now, I hope to be in a position to write a short, elegant guide on learning the gluten-free diet.


Photo credit: Barrel blasting, by Quinn Dombrowski, on Flickr via a Creative Commons license


The Surprise and Relief of a Celiac Disease Diagnosis

For more than a decade — and possibly longer, but a decade is about all I remember — I have been diagnosed as anemic. My hematocrit (red blood cell count) is typically very low: 26 when it should be in the range of 35 to 50. My recent ferritin count was three; it should be at least 12.

I have not ignored the diagnosis. Although its underlying cause was never confidently pin-pointed, I have been tested for anemia disorders like sickle cell (negative), taken oral iron supplements, received iron via intravenous infusions, had stool samples checked for occult blood, and seen a gynecologist about my menstrual patterns. Once, after a 10-week cycle of weekly iron infusions, my hematocrit briefly climbed to 34 before dipping again. A specialist finally concluded that my three pregnancies, total of 36 months of lactation, and years of menstruation had depleted me. “Keep taking the iron supplements,” he advised. I have been more or less compliant.

With a ferritin count of three, both my primary care physician and endocrinologist for my diabetes, who are former colleagues and therefore communicate (yay!) about my health, implored me recently to go back to the hematologist. “You’ll feel better,” said Dr. A. Grudgingly, I called the clinic and made an appointment. By happenstance, the doctor I had seen in the past was unavailable and so they scheduled me to see his colleague.

The visit lasted two hours. When does that ever happen in today’s health care world? Blood was taken. A physical exam was conducted. My family history of diseases and countries of origin was carefully elicited and recorded. The hematologist, a woman, told me she was very worried and determined to get to the bottom of this. “It has gone on too long, and you have never regained your iron stores.” She scheduled an endoscopy and colonoscopy. “We have to rule out an ulcer, intestinal bleeding, and, let’s face it, cancer.”

It sounds scary, but I wasn’t scared. I felt carried along by her steady authority coupled with her gentle concern. She helped me worry about myself sufficiently to take greater action than I had in the past.

A week ago Monday, fully prepped (I should say fully emptied), I showed up for my endoscopy/colonoscopy appointment and met with the doctor. The nurses had already been lovely. This doctor seemed both quiet and kind; his smile was sincere, reaching the eyes. After introducing himself, he surprised me by saying, “I already know the diagnosis. I’ve looked at your blood test results from last week, and the answer is clear. You have celiac disease.” He explained that the hematologist had ordered tests for the markers of celiac, and the results were strongly positive.

Instantly, I was relieved. Over the weekend, I had been anticipating an ulcer diagnosis — my mind, thankfully, would not let me ruminate on the scarier cancer. I even Googled “ulcer” and studied the symptoms and treatment. As the doctor now explained celiac — an immune response to the proteins in wheat, rye, oats, and barley that affects the intestines — I thought to myself, “Okay, this I can deal with. Dietary restrictions? Bring them on. I’m already good at this.” I’ve had Type 1 diabetes for more than 20 years.

He continued to explain both procedures and indicated that he would be looking for physical evidence to corroborate the blood test and also to see the extent of the scarring. (I only know a little bit about this so far, but apparently the immune response damages the villi that absorb nutrients. This is considered “scarring.”)

Whatever sedative they gave me via the IV made me unaware of both procedures and forgetful of them. After they were over and I was alert again, the doctor showed me photographs of my duodenum, and told me that, because of my “efficient intestines,” the damage was both localized there and was reversible. “If you avoid gluten, the villi will come back. Soon you will feel better.”

The funny thing about this is that I haven’t ever felt what I would characterize as “bad.” In fact, when doctors, seeing my blood test results, have asked me if I am fatigued, I have replied, “Well, aren’t we all?” I have always imagined myself as simply part of that group of modern-day people who are workers on top of a lot of other responsibilities. I also have not experienced any of the digestive distress that others with celiac reportedly experience. Dr. F., the hematologist I saw a couple of weeks ago who was determined to get to the bottom of this, had said to me, “You must be tired. I’ve looked at your red blood cells, and they are so small.”

Ten days ago, I knew nothing about celiac disease. While I am relieved to have both a diagnosis and a workable way forward — white bread, I can give you up if I have to! — I am surprised because it was not on my radar, and it had not turned up in any of my Google searches for “iron deficient anemia causes.” It’s all new to me.

So far, I’ve been approaching it in a do-it-yourself way. Next week I’ll meet with a nutritionist for advice and in a couple of weeks with the hematologist again. In the meantime, with my husband and children’s help, I’ve been avoiding breads and pasta and gravitating toward potatoes and brown rice for side dishes at meals. Rice cakes and peanut butter make a great sandwich. I’ve given up my favorite oat-based cereals and looked for gluten-free ones at the supermarket. I’m doubling my portions of fruit- and vegetable-based salads. I can’t grab granola bars for a snack anymore, so it’s sesame rice crackers and cottage cheese instead.

This all seems very manageable at home, where things are in my control and I can put my culinary creativity to work. It has been challenging outside of the house, at my parents’ house for the holiday weekend and at lunch meetings at work, where we are typically served sandwiches or pizza.

I haven’t really figured it all out yet. I haven’t really figured much out yet. I am better at avoiding certain foods than I am at incorporating new ones.

This reminds me, and it may remind readers with T1 or T2 diabetes, of my first weeks after learning I was T1D. There seems to be food everywhere, but not for me.

I am hungry. I don’t know enough yet. I keep telling myself: this is a transition time.


The Health of My Whole Person

Annual physical: check

Blood tests: check

Mammogram: check

Calcium, Iron, and Vitamin D: check

The school year is over (I’m a college writing teacher), and I have time to take care of more than my diabetes. June comes around and I start catching up on health-related tasks that, I admit, I put off when I’m under pressure from teaching responsibilities and what Catherine Price calls “that loaded backpack we carry through our days” — the constant responsibility of a life with Type 1 diabetes.

From September to May, my focus on work is intense. I take my diabetes seriously, too, and check my blood sugar, count carbs, take insulin, and exercise daily, and I go to the diabetes clinic quarterly. I can’t take a week off from diabetes. There is always something to do. It is not unlike being the parent of a newborn: one that never grows up and gains in self-reliance.

Because the care requirements are so constant, I tend to let other parts of my health slip to the back of my consciousness. I mean, I know I need to have a mammogram, but I’ll get to it. My annual physical? I’ll do that in the summer. Replenish the supply of vitamins my doctor recommends I take for a few identified deficiencies? Those vitamins can wait, and in the meantime I’ll try to eat better.

I do realize that these tasks are slight, and I could get them all done in a couple of hours in one week, even at my busiest time. My avoidance of them, therefore, is probably not about the time. It’s about the mental overhead. I may only have a certain amount allotted to health, and diabetes takes up most of it. When summer comes and work is less demanding, I steal some mental space and time from that allotment to deal with my whole physical person.

Ironically, even though I’m hyper-focused on diabetes, by caring for it I am also caring for other aspects of my health to some degree. (The state of the organism is not terrible.) The diet and exercise help keep cholesterol and blood pressure where they should be. My doctor smiles when she asks me how often I exercise and I truthfully answer: “Every day.”

But my mammogram was long overdue, and I had gotten lazy in taking iron supplements, which I especially need because my hematocrit is often low. My compliance in some areas is very high, and in others they are spotty.

My goal this summer is to have goals, to get beyond the one-day-at-a-time approach to managing my health and look at the bigger picture: a set of healthy behaviors I can establish, monitor, and reflect on. I’ve cleared some space for this. They are particular to me: daily flossing, more nutritious lunches, and compliance with all treatments (not just insulin therapy). More rest — both sleep and the occasional putting up of feet — and attention to flexibility (yoga, stretching) are also priorities.

Still, I can’t (or I won’t) do it all at once. I’ve been taking baby steps: one improvement this week, one the next, and so on. The hope is that over a few months I feel better — stronger, more energetic — and that changes become habits.

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Doing It for Real: A Skater with Type 1 Diabetes Takes Her First Test

I took my figure skating test two days ago, on Sunday, as planned. For me, it was a rite of passage as a skater and a crystallizing learning experience. The outcome was mixed: not a quantifiable triumph, but a personal one.

Because the test would be my first ever as an adult skater, in the days leading up to it I tried to practice as much as I could without burning out, and I sought information from my coach and other skaters as to what the scenario would be like. Both, it turns out, are necessary for facing physical challenges.

On Friday, I had a lesson with my coach, Fred, at which we ran through the test as an approximation. We predicted the test could go either way; in some moves I was strong, in others still tentative. I was nervous. At the end of that lesson he said, “We’ve done what we can do,” in a positive (not resigned) way, and he gave me some last-minute advice on getting ready, which included a good night’s sleep.

On Saturday, I went to the rink hours for my club: the MIT Figure Skating Club (FSC). I continued practicing and tried to keep the urgency out of it. I felt sort of detached, in a useful way. There was no heightened emotion. I was calm.

I went home, washed my skating clothes, thought about what I would eat for breakfast, and went out to dinner with my family. Not nervous, I was still looking ahead to the next morning. I did not overeat at dinner, which might have required a correction bolus with unpredictable results later. I drank only half of my glass of wine, not wanting to experience the paradoxical low blood glucose (BG) sometimes brought on by alcohol consumption.  At bedtime, my BG was close to the ideal 100, so I dialed back on my basal rate by 20%.

Sunday morning, I awoke at 5am, alert. BG was 130 – pretty good. Got ready, double-checked my bag. I ate some whole-wheat crackers and peanut butter and filled a bottle with water. On my hand I wrote: Take off pump! I knew I would want to remove my pump before the test, not wanting the jitters of low BG to coincide with the jitters of test nerves. I arrived at the rink early, and talked to other early-bird skaters who were also registered for tests. A little nervous, not too much.

Went into rink. Judges arrived. Watched the first set of tests, one skater at a time. More nervous. Thirsty.

The 10-minute warm-up for my set of testers was announced. Heart pounding in chest. Knees trembling. Skated and warmed up, thinking too much.

I noticed that my coach, Fred, had arrived, and I was relieved to see him. We stood and watched the two skaters who tested before me and talked in low voices.  He prompted me to say out loud the order of the moves in my test:

  1. perimeter stroking, both directions
  2. forward and backward edges
  3. forward and backward crossovers
  4. waltz 8, twice
  5. spirals


Abruptly, without fanfare or announcement – just a nod from the test coordinator — it’s my turn. I fumble at unclipping my pump; I swig from my water bottle and drop the cap. I have practiced a calm skating face, and I put it on. I begin. My knees are shaking. I remind myself to bend into them, harder. I feel awkward. The rink is totally silent; there is no music, and the judges and other skaters do not speak. During my least comfortable moves, I hear my toe picks scrape the ice loud. So loud! They are not supposed to be scraping the ice. I frantically think: Oh no! I can’t stop this sound. I can’t fix this move. I know I am supposed to be skating on the balls of my toes, not on my toes, but I can’t make my feet get back to the balls. Still, I tell myself what Fred has told me: Keep skating. Go through the patterns.

I keep my outward composure, my skating face. I remember the order of all the moves, and I skate them all. My heart is pounding behind my sternum, and my knees shake. My arms, strangely, are steady. My T-stops are firm.

I finish; I skate off; I wait.

The judges’ feedback and scoring sheets are brought over and handed to my coach. Fred holds them, running his finger under certain comments. “Good. Yup, more work on these. We knew that.” He doesn’t say pass or no pass, and I can’t decipher the arrangement of the summary sheet to see if it explicitly says “pass” or “no pass,” but I can tell: no pass.

But, I’m okay. I’m not elated, but I feel lighter and proud of having done it. I feel as though I’ve been initiated and gone from being one kind of skater to another kind, and this is a kind that can’t be measured in technical skill, but in desire and determination.

And I kept skating. I did not back down or lose track of what I had to do.

The main judge, on his way out the door, stopped where I was standing with Fred. He said, “Don’t be discouraged” (I wasn’t), and he gave me some advice and more insight into his score. I thanked him.

The test session ended, and the ice opened up to all skaters. I skated, around and around and around. It was like breathing.

Tomorrow, I have another lesson with Fred. We return to the drawing board with more information. There is a 28-day waiting period to test again, and I will. From the experience, I learned that there are two kinds of preparation for an athletic test or competition: technical and mental. It is one thing to have the skills – and I believe I can skate better, privately, than I did during my test on Sunday – it is another thing to have the mental composure, toughness, and perhaps even bravado to carry me through a public scrutiny of what I can do.

I would never say I am glad I have diabetes, but my many years of living with it has taught me that I can make mistakes – even have a major fail – and I can take the feedback from those mistakes as data and apply them as knowledge to try to improve.

There are no assurances as to outcome. But going back to it, again and again, feels like progress. And on some days, I glide.



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