11 diabetes things I’ll tell you that health care providers won’t

Last week I had lunch with a friend who’s also an extraordinary diabetes nurse. Waiting for the meal she asked, “Why aren’t you injecting now?” I didn’t say what she expected, “It might take longer for the food to come than expected.” No, I said, “How do I know how much I’m going to eat until I taste the food?”

“This is what you should tell people!” she said slamming her hand down on the table. “All the things you’ve learned. All the tricks we don’t know.” This from my friend who has educated thousands of people with diabetes and has a zillion titles and letters after her name.

So here are 11 things I’ve learned about managing blood sugar from my everyday experience. Any may help you and you’re not likely to hear them from your doctor.

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Cartoon by Haidee Soule Merritt.

1. Don’t take your insulin until you actually taste the food. Okay, you already know that now. But here’s what to do. Take half the dose you think you should 15 minutes before the food arrives provided you’re not low. Take any remaining insulin after you taste your meal and know how much of it you’re going to eat.

2. Get pen cartridges instead of vials. My 90 day insulin supply through my direct mail pharmacy is three vials. For my mealtime insulin I use vial and syringe. If I order insulin cartridges (for an insulin pen) instead of vials, I get 15 cartridges. You do the math. You don’t need to put the pen cartridge in a pen, use it like a vial. Extract the insulin with your syringe. However, don’t push air into the cartridge as you do with a syringe. And do look for air bubbles in the syringe when you withdraw the insulin. If you get them, just flick them out. Don’t extract insulin from an insulin pen with a syringe, just the cartridge itself.

3. Everyone, stop saying “control!” I wish people would stop using that word. Yes, you can absolutely do things to influence your blood sugar, but you cannot control it. There are too many variables at play: stress, illness, exercise and its lag time, alcohol, carb guessing with food labels and meters up to 20% inaccurate. Managing blood sugar is not as simple and straightforward as your doctor seems to think.

Plus you can only do as well as our present day tools permit. My management would be far better with faster mealtime insulin.

And, take yourself off the perfection pedestal otherwise you’ll get knocked off every day. Just do your best, appreciate your effort and keep breathing.

4. Take a small amount of insulin to blunt your morning rise. Due to the Dawn Phenomenon, my blood sugar rises like a runaway train in the early morning hours. I take 1 unit of rapid-acting insulin as soon as I wake up, usually around 6:30 or 7 A.M. It halts the rise. I take the rest of my dose with breakfast usually an hour later.

5. You CANNOT have blood sugars close to normal without having lows. It’s your choice – you can let your blood sugars run high or if you want to be nearer the lower side of your target range often, know you WILL have lows. Be prepared. I carry glucose tablets in all my purses, pouches, pockets and knapsacks and keep a stash in the kitchen and by my bed. SweeTarts and Smarties work fine too and are nicely portable.

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Cartoon by Haidee Soule Merritt.

6. Reuse syringes and pen needles unless they break, bend or lodge in your body. No, don’t reuse bent or broken needles, ever. And, yes I’m kinda joking, but while needles dull with reuse, you can safely reuse them a few times. Use them for a few days or a week depending on how many shots a day you take. Stop reusing when you notice you feel the shot more than you should.

7. Stop eating a lot of carbs. The sugary foods (cakes, cookies, muffins…) and starchy foods (bread, bagels, pasta, potatoes, simple grains like coos coos…) you love, spike your blood sugar – and then drop it, wham. You end up in a cycle of high and low blood sugars and ravenous. Plus, high blood sugars call for extra insulin and insulin stores fat. Eat some carbs, mostly from vegetables and small amounts of fruit, beans and whole grains, and your blood sugar will become more steady.

8. Don’t react too quickly. For decades I dreamed of “Pinkie” my continuous glucose monitor – a tool that would tell me if my blood sugar was going up or down and how fast. But when Pinkie gives me the “up” arrow, all I want to do is stop her. So I take more insulin only to then drop too low. Watch and wait – that 45 or 90 degree arrow often flattens out a minute or two after you see it so nothing needs to be done.

9. Routine is a powerful tool. Doing most things similarly each day – eating relatively at the same time, and the same foods or types of food, doing my exercise at the same time of day – keeps my blood sugar more predictable. When I’m off my routine, usually due to travel, that predictability and my “nice” blood sugar numbers, all but disappear.

10. The “X” factor. Even though I just told you routine makes blood sugars more predictable, there is the “X” factor. You can do the same thing, the same way, the same time, two days in a row and get different results. But it will happen less if you do things routinely.

11. Diabetes IS a second job. With no admin person, travel dept, expense account or colleagues to have a drink or cronut with after a hard day’s work. No matter how long you’ve had this job, you’ll still feel like an idiot some days because many of your guesses will be wrong. Give yourself an occasional vacation – skip a blood sugar check here or there – and definitely reward yourself with a hefty end of year bonus.

Have you learned something that would help someone else they probably wouldn’t hear from their doctor?

I love you, I hate you Toujeo

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Toujeo is the new basal insulin from Sanofi. It’s not quite a replacement for Lantus as Sanofi will continue to sell Lantus. But, since a generic of Lantus will be coming on market later this year, it’s a new product for Sanofi that Lantus users might prefer.

My personal interest in switching from Lantus to Toujeo is it’s reported to last up to 36 hours. Lantus doesn’t make it the 24 for me. And it shows less nighttime hypoglycemia. Lantus typically drops me to 55 mg/dl around 5 AM most nights and then my blood sugar starts coming back up. Likely either my liver starts shooting sugar into my bloodstream to save me or the Dawn Effect begins, or both. But then by 6:30 or 7 AM my blood sugar is rising like a runaway train.

I’ve been using Toujeo since June 1, three weeks. From personal use I can also report the button is extremely easy to press. So if you’re a type 2 and take a lot of basal insulin, this will be much more comfortable injecting.

But I am absolutely crazed trying to figure out how much Toujeo I need along with my mealtime Humalog. When I take the same amount of Toujeo as I do Lantus, I seem to run high during the day. When I up the Toujeo by a unit, I drop overnight. And, every HCP will tell you not to change your dose for 3 days as your body has to get used to the change.

It is hair-pulling making this switch which I didn’t think would be difficult at all. I keep wondering how much longer to experiment. Granted, it’s not good to go hypo every night as I do with Lantus, but at least I knew my pattern, and I always came back up. Yes, I know, one day I might not. But now I’m having to figure out the impact of all the variables all over again: food, exercise, alcohol, weather, illness, stress, lag times.

I’m not giving up – yet. I more or less change one thing each day to see if it helps during my three day interval, and I’ve got two Toujeo pens left thanks to the largesse of my CDE friend who gave me samples.

So while improvements are always welcome, they’re not always easy.

Falling in love with my father now that it’s almost over

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My father began to leave us, mentally, two years ago. We were looking at photos on my mother’s computer when he pointed to his granddaughter on screen and called her his Aunt. My mother, brother, his wife and I looked at each other aware we’d heard the slip, but we colluded not to hear it. Or at least to leave a sliver of doubt.

For the past two years there’s been no doubt. My 92-year-old father has dementia. He speaks less each time I see him, which is about once a month. He can whisper a few words but it’s a great effort.

Last year when I would visit, my mother would coach him, “Your daughter Riva is coming today.” By time I arrived it seemed to stick; he seemed to know who I was. Now little sticks. We spent last weekend together yet he didn’t know who I was until Sunday night. He walked into the kitchen, smiled, and said pointing to my mother, “Your mother making dinner.”

In that moment he identified us both. For he no longer knows my mother either.

Last year he thought she was his sister and worried every night that she wasn’t leaving in time to get home safely. Now he asks me with a lopsided grin, “Who is that?,” shaking his head forlornly. He doesn’t know his wife of sixty-five years who now bathes him, dresses him, cuts his food, ties his shoes. The woman who found him going through the kitchen drawers at 4 AM holding a hammer, pliers and knife looking for more tools; his tooth was bothering him and he was going to fix it. The woman who had to put an alarm on the front door for fear he will open it and walk away. And had to put an alarm around her own neck in case something should happen to her. For then, what will become of him?

It breaks my heart every time I see him. Not because he doesn’t know who I am, I don’t care. But because I am falling in love with the father I grew up hating. And now there is precious little time left to have this love affair. It is starting as it is ending.

My father was diagnosed with clinical depression when he was fifty-five. Until then he was angry, moody, sullen and self-absorbed. He was not the father who takes you to ball games or ice-skating. He was not the father who asks at the dinner table, “How was school?” Or when I came home from Europe, “How was your trip?” He was the father who once home from work sat in the living room, silent, with a book and a drink. He was the father I experienced as emotionally absent and whose depression made him also at times emotionally abusive.

I knew the story of his own childhood. Two of his three brothers both died when they were sixteen years old. One from tuberculosis the other from an accidental fall while climbing a rope in the school gym. My father’s mother never recovered from the loss. So she doted on her youngest child, my Aunt Shirley, the only girl in the family. My father became lost in the shuffle and for years wished he was Shirley.

When my father was put on depression medication it took away the anger. It also took away any emotional vibrancy. The dementia has similarly kept him docile, but added a sweetness I have never known before. Sweet, vulnerable and helpless is a wicked mixture; it will break your heart.

My father spends his time sitting on the couch staring at the TV screen but takes little in. He often looks at me as if to say, ‘Who are you?’, ‘Why are you here?’, ‘What am I meant to do now?” An avid reader his whole life, he picks up a book from the side table, flips the pages, but takes nothing in. He wanders across the living room to the window and stares at a rock or a leaf or a candy wrapper outside. He wants to go and tend it, until my mother calls him back to the couch.

Each time I see him he has lost more ability to speak, hear, comprehend, do. As my physician assistant friend said, “His body is outliving his mind.” Yes, that is exactly so. He no longer understands why my mother calls him to the dinner table, or puts his jacket on him to go outside, or lifts him off the couch to get into the car so they can return me to the train station. But he goes along like a baby lamb following its mother. So that when he looks at me and smiles, trusting me for no reason, my heart breaks. These days all I want to do is stroke his cheek, take his hand or put mine over his heart.

It is cruel that God has made me fall in love with my father after sixty-one years. When I use to think about his passing, I thought I would miss him from time to time but no big deal. Now I am already devastated.

Getting out of the car at the train station I reach into the front seat. I take his hand and say, “I love you.” He turns as best he can, looks at me and says, “I love you.” My mother startled says, “Did he just say I love you?” He says it again, “I love you.” I get out of the car, reach into the front window where he is sitting, put my hand over his heart and he says it a third time, “I love you.”

I don’t expect you’ll be here dad next year for Father’s Day. But I’ll tell you again this Sunday, “I love you.” And now I know I always will.

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Breaking the cycle of food addiction

USDA Food pyramid

The USDA Food Pyramid featured above is a poor model for eating healthy and it keeps you addicted to carbs. What it shows we should eat most of is starchy carbohydrates – grains, breads, pasta, cereals. These foods raise blood sugar more quickly and higher then any other food. They then drop your blood sugar just as quickly. The result? You’re left feeling tired, hungry and craving more carbohydrates. You become addicted to these foods, literally, as sugar and starches light up the pleasure region of the brain – 8 times more than cocaine!

Plus, every time your blood sugar spikes, you either have to inject more insulin or your body has to produce more. This gradually poops out your pancreas (our insulin organ) so that it has to work harder pumping out insulin. When you eat a lot of these starchy, high glycemic index foods, you end up with a lot of insulin floating in your blood stream. Insulin is a fat storage hormone. Guess what happens to those carbs you just ate and didn’t burn? Insulin stored them as fat on your body. For the government to recommend making these foods the bulk of your diet, turning you into a carb addict, you’ve got to wonder who’s sleeping with who in the food industry?

Paleo-food-pyramid

This Food Pyramid represents the Paleo diet. It says eat mostly lean meats, fish, eggs and healthy fats. It’s a far better model to follow for general and diabetes health. Paleo, however, can be hard for many people to stick to. It usually doesn’t include dairy and is pretty strict about meats being cage-free and grass fed and vegetables and fruits being organic, making it a more expensive way of eating.

My personal pyramid looks like this. Okay, I took a little liberty with the wine ;-)

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This is how I eat: mostly vegetables, healthy fats, avocado should be in that picture too, with some fruit, fruit protein shakes, lean protein, nuts, seeds, some soy products, red or white wine and dark chocolate. Also, I make a delicious flax muffin every morning and munch on my own home baked nut/seed bread and chocolate biscottii. Here are the recipes. Each is delicious, nutritious and low carb. Occasionally I’ll have a sweet potato or quinoa, lentils or beans. Occasionally I’ll have whatever I want that’s not on this eating plan like ice cream or fried calamari.

Eating this way most of the time WILL break your food cravings and your brain’s addiction to sugar, flour and bad fats. It will stop taxing your body to over produce insulin and it will stop the fat accumulation on your body. Yes, you’ll lose weight. And as Dr. Mark Hyman below says, cutting the sugar and flour out of your diet, will reduce inflammation and disease and restore health. It’s not hard, you just have to decide you’re ready.

Functional Medicine is out to change our diet, thank goodness

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It’s a beautiful Saturday afternoon and I spent it doing one of my favorite things – taking myself on a treasure hunt. I scour my neighborhood on foot within about five miles searching for a particular item I need. Whether I find it or not rarely matters. It’s the fun of looking, the meandering through new neighborhoods and the benefit of the exercise.

At the end of today’s hunt I dropped into a coffee shop for lunch. I ordered a spinach and feta cheese omelette, substituting lettuce and tomato for the french fries and nibbling on the crusts of a piece of whole wheat toast. I couldn’t help but notice what the family at the table next to me was eating.

The boy closest to me had breaded and fried onion rings, french fries and fried chicken. The four other adults and two other children at the table had buttermilk pancakes the size of car tires with whipped cream and syrup. Not surprisingly, everyone, including the kids, was overweight.

A few minutes later, two couples sat down at the table on my other side. They began with sugared ice tea and donuts and then had a similar pile up of fries, grits, pancakes  and meat sandwiches to which they added sweet syrup, ketchup, fake margarine and salt. Everyone was also overweight at this table.

As the man poured ketchup over his wife’s fries all I could think about was the high fructose corn syrup in the ketchup. And maybe hauling him off for wife abuse. As the woman opened the little pack of hydrogenated margarine to put on her grits all I could think about was the harmful effect of vegetables oils and trans fats.

The families at both tables were Hispanic, although I don’t think that makes a difference. What they were enjoying is the typical American diet. What was so troubling was I don’t believe any of them knew that these foods is why they have the health problems they already do, and if they don’t already have them, the high blood pressure, diabetes and heart disease they’re going to get.

This week I’ve been digesting a series of Dr. Mark Hyman’s videos. Hyman is the Chairman of the Institute for Functional Medicine. He’s just been asked to start a department of Functional Medicine at famed Cleveland Clinic. I’ve never forgotten years ago when I read a line from one of his books, “What you put at the end of your fork is more powerful medicine than anything you will find at the bottom of a pill bottle.”

Functional Medicine treats the body as one whole system, as a mechanism, and looks for the root causes of disease. Traditional medicine looks at the body in pieces, referring out to specialists who cover a particular piece, and prescribes pills for disease symptoms.

Functional Medicine believes food is medicine and that food, fitness, environment, toxins and stress drive the body’s mechanism to either increase or decrease wellness. Immersed as I’ve been this week in Hyman’s teachings – hearing anew that every bite determines which genes express themselves, which enzymes, hormones, DNA get turned on and whether inflammation occurs, I watch people eat seeing the direct route from fork to stomach to disease.

It’s not about the number of calories you eat that we’ve heard for so long but the quality of those calories. The wheat we eat today is not the wheat of yesteryear, it’s been bastardized and raises blood sugar faster than it ever did. A McDonald’s breakfast creates immediate inflammation in the body. It’s horrible – I can’t look at what people eat anymore without wanting to leap over my table and save them.

If you’re interested to learn more, this is a really good presentation Dr. Hyman gave at TED on Functional Medicine and food. Hyman’s also written several books about fat and sugar and insulin resistance. His latest book is The Blood Sugar Solution 10-Day Detox Diet.

In one sentence here’s the food key to maintaining health, losing weight and preventing or reversing insulin resistance and metabolic syndrome – get rid of the sugar, flour, artificial sweetener and processed foods in your diet, add more healthy fats – avocados, nuts, seeds, coconut oil, olive oil – and make the bottom of your food pyramid vegetables and lean protein.

DPAC launches to bring diabetes issues to lawmakers

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So who is DPAC? Well, you are if you want to make your voice heard to the power-mongers in Washington voting on diabetes policies.

DPAC, which stands for Diabetes Patient Advocacy Coalition, is the result of two (and I’m sure many more) amazing DOC advocates, blogger Christel Marchand Aprigliano and Bennet Dunlap, creator of the StripSafely initiative. It’s our opportunity to become a well, if not pressure group (one can dream), a pressing group, to let decision-makers know what we need, what we want, what it’s like living with diabetes and to widen their view to see us – and keep that spotlight lit.

DPAC takes the work out of knowing and/or reaching your congress person or local representative, it’s all been done for you. DPAC is a central station for us to voice our concerns, easily, quickly and with all the power that doing so as a unified body brings. DPAC is:

  • One website to learn about the issues impacting people with diabetes being decided by lawmakers and governmental agencies and then tell them quickly how you feel.
  • A few clicks and you’re done.

Here’s more from Cristel to sign up and learn how to add your voice to issues on diabetes safety, quality and access. I most like this benefit, DPAC will keep policy makers’ attention on people with diabetes. Join the groundswell, your voice will find a chorus here and in that is a very powerful force for change.

Afrezza has some strong support

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Last week I attended a diabetes education meeting where I was introduced to Afrezza by an endocrinologist using it with many of his patients. If you don’t know, Afrezza is the new inhaled insulin from Sanofi. It’s not quite yet ready for primetime with consumers, but it’s making the rounds with health care providers. At my meeting there were three Sanofi reps, two doctors, one nurse and me.

Afrezza’s benefits are largely that it takes away the fear of needles for type 2s. But I like the idea that it works faster than today’s rapid-acting insulins so one doesn’t have the typical after-meal blood sugar spikes. Faster in, faster out.

I arrived at the meeting with great curiosity – I’ve been reading about people really liking Afrezza, including type 1s like Amy Tenderich above, who wrote a fantastically informed post about trying it herself on her blog here – and I came with two concerns.

At the meeting one of my concerns went away, yet I don’t know how they do this. As a type 1 who eats a very low carb diet I use very little mealtime insulin. 1 unit is typically my coverage for a meal any time of day other than early morning when I’m experiencing the Dawn Phenomena. Thus, I couldn’t figure out how Afrezza – where the lowest dose is 4 units – and I could ever be compatible. I still can’t make sense of the answer, but I learned that you don’t calculate it as in a 1:1 conversion. If you use anything less than 4 units of rapid-acting insulin, you take one blister pack (a 4 unit dose) of Afrezza. Math is obviously done differently in the pharma world.

However, my other concern lingers. For some reason I heard at the meeting that Afrezza has been in clinical trials for two years* (Many have corrected me, see below. The rep just sent me the package insert which may explain the two year period. I’ve put it under ‘Comments’). While Afrezza shows no particular strong influence of harming the lungs, currently it’s not recommended if you’re a smoker or do have any lung issues.  Many people experience a cough, some lose it, some don’t. To start Afrezza, you need to first have a lung function test.

As for that pharma math, I’m about to give Toujeo, the new basal insulin, a test drive. A CDE friend gave me a sample. Toujeo is a concentration of insulin three times greater than Lantus and Levemir, so you can’t do a 1:1 comparison here either. Thus the warning, don’t attempt to extract it out of its pen with a syringe.

All in all, I’ll wait a few more years to watch whether Afrezza does impact lung function. In addition, I wouldn’t want to change two variables – Touneo and Afrezza – at once when it comes to my diabetes management. It would be too hard to know which is causing what.

But it is an odd thought that after a decade of using Lantus and Humalog, that have become like old friends, in a few years I may throw them over for two completely different BFFs.

* Readers let me know what I heard at the meeting was incorrect regards Afrezza’s length of time spent in trials. See comments.

Really, “living with diabetes”?

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I know a lot of people don’t like the term “diabetic.” They think it reduces us to our disease. So we have come to use in our speaking and writing the expression, “people with diabetes.” For short PWD.

Personally, I don’t care what you call me. Well, within reason. I know what diabetes is for me. For those who do call me a diabetic, or use the term in their writing, I just see it as a shortcut with words, not a shrinkage of who I am.

That said, we often use another term for those who have diabetes. I read it all the time, “living with diabetes.” As in, riva is living with diabetes. I suppose I should tell my husband we are not alone and maybe this diabetes should pay some rent.

Have we picked up this expression as a euphemism? Does it seem less harmful, less real, more gentle if I’m living with diabetes rather than I have diabetes.

Truth is, I have diabetes. If I were living with it I’m sure I would have asked it to vacate the apartment a long time ago. At least stay under the dresser or go out into the backyard, if I had one.

I don’t say I’m living with green eyes, or tinnitus or shoulder tension. I say I have green eyes, tinnitus and shoulder pain. Well, if anyone bothers to ask. I also have diabetes.

Here’s my final word on the subject: After the cure, I know I’ll say, “Yes, I had diabetes,” not, “Yes, I lived with diabetes.” For really, any sane person would immediately ask me why I didn’t ask it to leave.

A funny, visual trip through a new type 1’s world

Months ago Joe contacted me for a quote about living well with diabetes. Quote given, Joe forgotten, I saw today he tweeted this wonderful article he scribed about being a newcomer to the type 1 club.

Have a read. He’s a funny, laugh out loud funny, touching, insightful guide through type 1 diabetes. It’s also an unusually pleasurable way to spend ten minutes, perhaps learn a few things and/or find your experience staring back at you through grin-producing visuals. Like this one:

Joe