Ilene Raymond Rush's diabetes journey started with a diagnosis of gestational diabetes 25 years ago, while pregnant with her first son. For seven years, she avoided a diagnosis of type 2 diabetes with daily six-mile runs, but with her second pregnancy the gestational diabetes returned. In 1987, she was diagnosed with type 2 diabetes, and started on a regimen of drugs, diet and exercise. Read full bio

Life Without Byetta or Bydureon

Last October, I started an experiment to see if I could do without Byetta or Bydureon after I got concerned over reports of pancreatitis and pancreatic cancer attached to the drugs.

My fears may or may not be real, but the warnings on the promotional material scared me.  I know its a risk you take with any new drug, when there are not long track records to ascertain possible ill side-effects. But after talking with my endo, I dropped the drug, and worked on changing my diet. I cut out breads, grains and most fruit  (I occasionally eat berries) and upped my protein and veggies. And after four months, without Byetta or Bydureon, I’m here to report that my most recent A1C was — wait for it — 5.6. I know! The only issue now is that because I increased my protein, I may have overindulged in the bacon and fat pyramid, so my cholesterol was a tad higher. (It’s always something.) So now I’m limiting my proteins to chicken, nuts, fish, and egg whites.

The dirty little secret about eating this way is that as long as you keep a lot of variety in your diet, it’s amazingly easy. I’ve mastered a million different kinds of omlettes (my favorite is asparagus, dried tomatoes and low-fat Swiss cheese) and tried some new recipes, including a shepherd’s pie with whipped cauliflower in place of mashed potatoes. I’ve continued my regular exercise of about an hour a day, either on a recumbent bike or a weight lifting class. At the start I was a bit cranky, and maybe a bit tired, but overall, I’m pretty much back to my normal self.

My endo worries that this might not be sustainable, and he may be right. But for the moment, I’m glad I gave up the Byetta. I have to admit that it was nice losing weight (I dropped fourteen pounds on the drug and gained back four), but for me, the risks were a bit too high.

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My Wake Up Call: Bydureon and Possible Cancer Risk?

Last week, I attended  the Second Annual Diabetes Symposium at the Thomas Jefferson University. Surrounded by endocrinologists, nutritionists and diabetes educators, I sat through the lively presentations on new advances and innovations in diabetes. The news was not entirely encouraging — while the artificial pancreas seems on the horizon for type 1’s, the docs seemed somewhat stymied by the obesity problems of their patients, and most of the event centered around medications and what percentage of help old and new ones lent to rising A1C profiles.

But when Dr. Edwin Gale began to talk, my ears perked up; he addressed a topic near to my heart, diabetes and cancer. As a type 2 who has been injecting Byetta and then Bydureon for the larger part of four years, I had become alert to reports associating these drugs with pancreatitis and possible pancreatic cancer. And though Gale noted that diabetes did not seem to be in itself a cancer risk — unlike obesity — he talked about possibilities that these medications did carry certain risks of “subclinical injuries to the pancreas.” That this subclinical inflammation continued after even stopping the drug was further fuel for worry.

Sitting in the audience, already aware of the Hopkins studies, I began to get a little flutter in my stomach. When the presentation ended, I dashed up front to ask Dr. Gale a simple question: If he had a daughter, and she were on these drugs like Byetta and Bydureon, what might he tell her to do?

He didn’t hesitate. “Get off them at once.”

Needless to say, I was worried. So when I returned home, I called my endo. He called right back and we talked it over. He reminded me that these were new drugs, that there haven’t been long term studies and that there is a great deal of disagreement on these issues. But he didn’t really see any harm in my continuing on them. And yet. So we talked some more. And though I have been doing very well on Bydureon, I decided that I was going to take a break.

It wasn’t easy making the decision. I don’t think I’ve ever challenged my doctor’s knowledge before. But  for now I’m back on my old routine of Metformin and Amryl, few carbs if any, and lots of exercise. If, by January, my A1C takes a climb, I’ll have to reconsider. Stay tuned.

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Sleepwalking With Diabetes

So Monday morning I woke up, my nightgown marked with peanut butter. The thing is, I’m not a sloppy eater, and I didn’t have any peanut butter the night before. At least, I didn’t think I did. But that was only the first clue. The second was a sticky taste in my mouth and a grumble in my stomach. I got on the scale and somehow – although I had skipped dinner – I had gained three pounds.Slowly, I went down the steps from our bedroom to the kitchen, confused. There, I was confronted with clues three and four: a discarded spoon smelling of peanut butter and in the garage, an empty container of – you guessed it, — peanut butter. It looked licked clean.

By this time I was going a little nuts (!)– wondering if I had been taken over by ghosts or aliens – when I suddenly remembered several stories I had heard on the news in January about the sleep aid Ambien.

For the past month, during a very stressful time, I had been taking Ambien to catch some zzz’s. The stories I had heard about the drug seemed too bizarre to take into account: tales of emptied Oreo sleeves,  folks shopping for and cooking entire meals and eating them while under the influence, with no memory of the experience afterwards. At all. They literally blacked out. It was akin to my heading downstairs in the middle of the night and downing an entire jar of Trader Joe’s salted crunchy peanut butter. And then, in my sleep, sending the jar towards the recycling bin.

For a veteran dieter and person with type 2 diabetes, this event struck me as cataclysmic.

Not only did I have to find another way to get to sleep, but I had gained three pounds involuntarily. When I went to my doctor, he asked, “Where was the chocolate?” He had a good laugh about my recycling while sleepwalking, and took me off the drug.

 I’ve been working on getting off those three pounds. I won’t let peanut butter in the house. the only upside? At least my subconscious went for  low-carb.

 

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Who’s in Charge?

This morning  I was standing in line at the drug store to get my diabetes drugs when I felt that familiar sudden dip in my stomach and throat. Color drained from my face and my fingers started to tremble and I realized with a thump that my sugar was dropping. Again. 

Outside the store it was lightly snowing; inside I worried that I might collapse on the floor. I fished in my handbag for my glucose tabs and quick, before I actually did hit the linoleum, found the tablets and swallowed them, willing that the three would boost my sugars high enough to allow me  to drive into the city for a doctor’s appointment. In the line, I closed my eyes until the sugar did its magic and I was suddenly aware of how angry I was. Mad at diabetes, mad at my low, mad at everybody and everything. Focus, I told myself. Think of how many times you’ve been through this in the past and how many times you’ve solved this problem. Shrug it off. But this morning, for some reason, I couldn’t. I was tired — tired of taking medicine, tired of watching what I ate, tired of being held hostage to my metabolism.

Which is ironic, since I spent the morning counseling a friend who has just developed acid reflux in her throat. Fed up with her newly limited diet, she told me how her new therapist told her she has to ‘take control’ of the illness, and not let it overrun her. That’s right, I told her, that’s exactly what I’ve done with my diabetes. I’ve traversed all the stages of grief and come out on top — diabetes isn’t the boss of me.

But at this moment, when I’ve moved from the drug store line to the driver’s seat of my car,  wondering if it’s safe  yet for me to drive downtown, it’s all I can do to try to control my annoyance at my body for having betrayed me yet again.

I wonder who really is in charge.

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The Truth About Needles

I’m thinking about needles.

About how, if you asked me twenty-seven years ago to stick a needle into my finger, two, three or four times a day, I would have found you mad. How the first time the doctor showed me how to pinprick my finger when I was found to have gestational diabetes, I shied away, nervous and afraid. How, when I first was told I needed insulin to forestall my gestational diabetes, I exercised like a crazy person – two, three, four hours a day – any amount not to not have to stick a needle into my skin. How with the second pregnancy I put aside that fear, and learned to give myself insulin. How, for the past three or four years I’ve been injecting myself with Byetta twice a day and how I didn’t even flinch when the nurse brought out another slightly longer needle for a new drug, Byreudeon.

“I know needles,” I tell her.

I remember drawing blood from my dying father’s hands, a long process given the many callouses that had formed on the tips of his working man’s fingers, pricking him again and again to reap the tiniest drop of blood to measure his glucose readings. I remember tapping the vials of insulin to remove the bubbles, swabbing his stomach with an alcohol wipe, and injecting him. I remember thinking how as a little girl, such a moment would have been unimaginable, me the squeamish one, wary at the sight of blood, shielding my eyes from the slightest bit of movie gore.

“Most people don’t feel that way,” the nurse tells me, as she hands me the needle for the new drug. “Most people try not to take the drug, just to avoid the needle.”

I remember how a friend, who has watched me inject myself, asked for my help in injecting a drug she needed, how she asked me to come over to her house to watch her put the needle in her thigh. We joked about how we were both now ‘shooting up’ but the truth is, the idea that I can withstand a needle without fainting or whining or complaining makes me kind of high. It’s not something everyone has to do, of course, or something everyone (or anyone) wants to do. But it’s something that I – the one-time scaredy- cat, the one who blanched at blood – have learned to handle. It’s a skill I have, a badge I’ve earned. I can take a piece of hard sharpened steel and stick it into my skin.

In the small room with the nurse, I practice mixing up the new drug, and then shove the needle into a hard orange pillow for practice.

“You’re so optimistic about your diabetes,” the nurse smiles. “I wish I had more patients like you.”

Here’s the thing about needles. I fucking hate needles. But I know I have a choice. Either I refuse the needle, refuse the sticks, refuse the tests and let diabetes win. Or I make the hard bargain to inject myself, keep my sugars low and manage my A1C’s. It’s a bargain I make every day before I stick the needles in. I won’t let the needles win. 

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New Stuff

One of the great pleasures of my diabetes life is playing with new gadgets and getting to try out novel and more effective medications. I know that might not excite everyone, but since today is a double hitter — a new medication plus the first time using a new meter — I really do feel as though it’s a bit like a type 2 Christmas celebration around my house.

First, the drug. A once-a-week injection of Byreudeon is going to replace my twice daily injections of Byetta. If it works as well as Byetta, I’ll be a lifer. While I was initially put off by having to mix my own drug compound and the warning labels stamped on all the introductory  materials about Byreudeon possibly causing thyroid cancer, I met with my endo’s nurse a few weeks back and was reassured that the mixing wasn’t that difficult (it really wasn’t, only time consuming) and that the warnings were  prompted by occurrences in mice and not humans. While that might have not convinced everyone — and I am still a bit nervous — the idea of only having to inject the medicine once a week was too appealing to pass up. And though the warnings also mention nausea, which I suffered mightily upon first taking Byetta, so far, so good: I got to play chemistry set and am feeling no pain.

The other new toy is a One Touch Mini, which makes my old tester look like a Model A. The device is tiny and fast and seems to give good readings — or at least readings that match up with my old meter, which I had nicknamed Old Reliable. Opening up all the new packaging and setting up dates and times made me feel as though once again, I’m restating my vows to keep up with good diabetes care.

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A New Way to Shop

Shopping for delicious food that doesn’t get in the way of good sugar readings is always a challenge for me. In some ways, the more the variety,  the more temptations. For example, it’s easy to be walking around in a market (I’m looking at  you, Trader Joe’s) and to quickly realize that so-called health food stores aren’t always quite so healthy. Sure, they offer whole grain breads and flax seed, fresh fruit and Greek yogurt. But, perched right next to the “good for you” snacks lurk chocolate covered dried cherries, frozen mousse cakes, and Triple Gingersnap Lemon Ice Cream (agh!) that despite my spartan grocery list, often accompany me out the door.

When I point out this inconsistency to the cashiers, they nod, only a bit sheepish and not at all surprised.  They’re willing to  admit that’s how the chain makes money — good food next to your basic crap masquerading as healthy treats.

Which brings me to the latest entry in our  Elkins Park neighborhood — the Creekside Co-op. At coffee with Jess and Mike a week ago in Philadelphia, I mentioned the Co-op, which was four years in the planning and currently involves over 400 families in our small suburban community. Jess was immediately intrigued. The idea of having a store where you get to control the content is intriguing, and enpowering. And true to the founding vision, a recent visit shows that indeed the community has spoken — the store is filled with local fruits and vegetables, organic meats and fish, deli, fresh breads, and surprisingly little junk. The sight of such freshness is inspiring and lends me to believe that I might be able to make it home from shopping without so much buyer’s remorse.

To be honest, the prices at the Co-op aren’t cheap. But the idea of a market where you get to be the boss, complete with tasting nights where shareholders can decide which new products will be granted shelf space, is a bit intoxicating. So much so that I may be closing my eyes to the few cents more here and there and replacing some of my frequent Trader Joe runs with trips to the Co-op.

What are we paying for when we pay for food, anyway?

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A Momentary Truce

As I left the endocrinologist’s office today with an A1c reading of 5.6, I had an odd thought: I am at peace with my diabetes. It’s odd because in many ways and on many fronts, I’ve spent the past twenty or so years in thrall to, in awe of, and in fear about my diabetes, worrying about everything I ate, obsessing over exercise routines, and dreading the readings on my glucose meter. But today, after a talk with  my endocrinologist about reducing my meds, and the news that my twice daily Byetta sticks can be reduced to once a week  by using a newly formulated long-lasting drug, I felt at peace. And while diabetes continues to be no fun, I’ve come to terms with it, and am  truly doing all I can do to  deal with it.

It’s a funny feeling, because I’m the sort of person who does not often feel this way — not about work, not about relationships, not about family and friends. I’m much more  often to be found full of angst, worried about an assignment or concerned that someone is nursing a slight against me. Of all the areas in my life that I felt I could possibly gain control, diabetes was not my first thought.

But miraculously, that is what happened. I’ve figured out a decent diet that includes carbohydrates, whittled down an exercise program that keeps my sugar in fighting range, and avoided the stress that has, in the past, sent my sugars soaring. And save for an occasional low now and then, I’ve actually balanced that part of my life.

The revelation may be momentary, and the balance — knowing how fickle the body can be — may not last. But I wanted to document that on December 7th of 2012, I feel pretty good about my diabetes. It’s not going away. It’s not solved. But it’s become manageable, and I’m managing it and for that I’m giving myself a pat on the back and saying, Good job.

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Eating Up A Storm

A small post in the Science section of the New  York Times caught my eye this week: it concerned the comfort food that readers turned to during last week’s Hurricane Sandy. Caught in the middle of the storm — which downed innumerable trees, robbed us of power and internet connections for five days and kept both my sons from getting back to their perches in Brooklyn and Middletown, Connecticut after their attendance at an Eagles game — it amazed me that really, when it comes right down to it, when you don’t have lights or heat, your thoughts really do turn to food. Intensely. Readers of the Times talked about pumpkin soups and outstanding chocolate chip cookies. We mainly stuck to the many foodstuffs that were rapidly defrosting in our frig — from the excellent Trader Joe’s Pumpkin Ice Cream to the turkey meatballs I whipped up one night to serve with big plates of whole wheat pasta. We made yummy breakfasts out of once frozen bagels and a carton of hardboiled eggs, lunched on all of the cheeses that were about to spoil, and dined on said meatballs, plus vegetarian chili, pot roast and a duck breast that I’d been saving for months.

And what about diabetes? Well, another thought about the hurricane: it isn’t the best time to have a chronic disease. I tried hard to avoid the Halloween candy — which I had bought before the storm hit — but the need for an uncomfortably full feeling trumped my will power. We tried to exercise once the worst of the winds were over by taking walks around the neighborhood to inspect the damage and downed wires, but it wasn’t equal to my usual one hour biking a day. During daylight hours, we voyaged to a local coffee shop, where I tried to limit my order to salad. But to be honest, I’d have to say that when the power came back is when my bad diet habits also came to an end. But here’s the kicker — a Nor’easter is currently pounding the East Coast and my thoughts are once again turning to…you guessed it, food.

 

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A little Italian magic…

Last week, I spent a magical week with Natalie Goldberg, author of (among other books) Writing Down the Bones, at Villa Lina in Italy, an 84 acre estate filled with fig trees, olive groves, vineyards, and hazelnut trees. Each morning, participants gathered in the Zendo — a large white room filled with colorful mats and rugs — around a bouquet of seasonal flowers and meditated for a half hour with Wendy Johnson, author of Gardening at the Dragon’s Gate. After meditation, we gathered for breakfast, followed by a class with Natalie on writing practice, a method of writing that involved following the path of your mind as you responded to various ‘prompts’, such as “I remember…” or “I don’t remember” or “Jello.” In the afternoons, we broke into small groups to respond to these prompts for ten minutes at a time, then read our writing to our groups, who sat in silence, listening to what we wrote.

I had come to the retreat with my natural skepticism intact; I had never meditated before and didn’t quite understand how writing practice worked. As a long time freelancer, the idea of finding a new way of writing seemed doubtful at best; I wasn’t in search of a guru. But whether it was the sheer beauty of the several houses located on the Villa Lina property, or the peacocks seated on the roofs, or the stone fountains bubbling throughout the property or the three swimming pools, or the refreshing sound of silence from ten at night to ten in the morning when we were not supposed to talk, the retreat worked it’s magic on me, and I came back more relaxed than I have been in years. Eating an all organic almost all vegetarian diet and walking through the tall linden trees and umbrella pines didn’t hurt either — I dropped those pesky five pounds that I’ve been fighting for years and my sugars stabilized without worrying about the occasional hazelnut cookie or slice of liqueur soaked cake. All in all a once in a lifetime experience, for which I am profoundly grateful. A week with my own thoughts, good company, and good sugars — what more could I want?

 

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