Can I introduce you as, “If you don’t take insulin you’ll die?”

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Speaker in CT_2“Thank you for your gift to JDRF and the 2 million people, most around my age, who have type 1 diabetes.”

My husband is a management consultant who lives in Brooklyn and works in Europe. It’s a heck of a commute but somehow we make it work.

Last week he facilitated his first week-long management course in Connecticut, a mere two hours away — Eastern Standard Time and no jet lag. But greater than that, in the world of ‘wonders never cease,’ his course participants, as is the company’s tradition, elected a charity to make a donation to at the end of the course and they chose (all on their own, no coaching from my hubby) Juvenile Diabetes Research Foundation (JDRF).

Now, what was even more remarkable  was not only do I have type 1 diabetes, but one of the other four course leaders has a 17 year old daughter with type 1 diabetes.

Typically a guest speaker is invited the last night of their course to talk about the chosen charity, so it was not a stretch for my husband to call me and ask if I’d come up and fill the role. Knapsack packed, I hopped a train from Grand Central Station and was soon standing in front of twenty executives from ING and five executive management instructors to compress thirty-six years of living with diabetes, and the establishment and achievements of JDRF, into fifteen minutes. Oddly enough this is fun for me; while I may get white knuckles just before showtime, after I’ve gotten my first laugh, which I intend by the way, my knuckles open up and I feel my audience resting in the palm of my hand.

It was easy to draw parallels between the topic of their course, leadership, and the leadership of the impassioned parents of children with diabetes who collectively wrote letters and called senators and created JDRF, now a world class cure-focused research organization. It was easy to liken managing systems in a corporation with managing our systems in diabetes: food, exercise, medicine, stress, illness.

Toward my close, I talked about my own personal passion in my work, helping people develop the emotional resilience to get up each and every day and manage this condition again, and again and again, and how still after 36 years of living with diabetes I have no assurance that Tuesday will go the way Monday did, or Sunday did, or Saturday did. As I spoke those words in particular my voice cracked, tears came and I choked, I choked right there in front of 25 executives. My husband told me later it was a great moment of authenticity and they “got it.”

I’ve spied here and there over the past year of giving presentations, that no matter how much knowledge I possess or how well I speak, diabetes comes with an emotional suitcase, and while I thought I’d only brought a knapsack to Connecticut, that emotional suitcase had accompanied me unnoticed. But it’s also O.K. because it was in opening that suitcase in that room that evening that allowed for a shift in my audience from head to heart.

When the host asked me pre-speech how I wanted to be introduced, before I answered he said, “Is it true if you don’t take insulin you’ll die?” I would have never have thought of that in the moment, but I said, “Yes, actually it is.” He asked, “Can I use that in the introduction?” To which I responded, “Sure, why not?” “O.K., great,”he said laughing, “I’ll bring them down and you bring them up.” A version of good cop/bad cop perhaps, and a brilliant game plan hatched in 60 seconds.

But his question, is it true if you don’t take insulin you’ll die, unknowingly made me feel a little vulnerable and a little heroic, which truthfully I rarely allow myself to feel. So maybe that’s where my tears came from 12 minutes later. In any event, the next day 20 executives went home to neighboring parts of Connecticut, Des Moines, North Dakota, Massachusetts, Atlanta and one to Amsterdam with a little better understanding of what type 1 diabetes is, how invisible this illness is and what all us invisible people are doing all day long managing round-the-clock blood sugars. And I’m pleased to say these executives who overpaid for mugs and hats and theatre tickets to raise money for JDRF raised $2,600 and the company matches half so all tolled almost $4,000. Not bad for a night’s work and a free dinner.

Do you remember when it all began?

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I was really caught short the other day. Spending most of my personal time around diabetics who know the score, I was faced with my neighbor’s mother who had just been put on insulin and was scared witless to give herself a shot. She asked if I would lead her through it so she didn’t make a mistake. She was using an insulin pen, which I do not use, so I had to read the instruction sheet right along with her. In doing so, I realized just how confusing and daunting this can be.

First there was the screwing in of the pen needle. Do you do that while it’s still in its protective plastic case or liberate it first? I still don’t know. Then there was the actual slipping off of the needle cover to expose the slinty steel thread. Then the priming: tap the exposed insulin cartrige a few times – how many is a few times and what exactly are we looking for? Carol was looking for something while I figured this was just about sending any air to the top of the cartridge. But how would she know that? And I saw she took pains to tap the cartridge in a particular way as if tapping otherwise wouldn’t be right. Then you’re instructed to dial a dose of two units to release any air in the cartridge. With this motion one should see a drop of insulin escape from the needle. Well, I did, but Carol didn’t because at that point she told me her vision’s not very good and she wasn’t wearing her reading glasses which would probably help. Oy, I thought, we’re dealing with units of insulin and your vision’s not very good? And being as nervous as you are about this, you’re not wearing glasses? Is this denial?

OK, air test performed and I ask Carol how many units her doctor said she needed to inject. She looked at me confused and said, “Doesn’t it say on the instruction sheet?” Yikes, power outtage of the mind, total disconnect, no apparent understanding that you dose for your needs based on food, exercise, blood sugar count. But I can’t blame Carol. She doesn’t know what she hasn’t been told, or what hasn’t been clearly communicated. Whereupon I see what a major breakdown we have in our medical system. You need to manage this disease, yet probably millions of people with diabetes are walking around with no information, misinformation and totally unprepared to take it on. Hmmm…doesn’t bode well for rising medical costs or the millions who’ll find themselves in hospital beds in years to come, as one diabetes educator expressed to me. So, we held off the injection till Monday when she could ask the doctor how much insulin she was to take.

Monday night I ran down to her apartment to guide her through her first injection. She answered the door in a T-shirt and no pants. I was about to say, “Do you want to put on some pants?” when I realized she was thigh-exposed for her first shot. How foolish of me not to infer this, but then I shoot through stockings, jeans, and usually just tuck up my shirt and go right through my abdomen. Anyway, within 5 minutes I had guided her through her first injection, her shaking hands steadied and she put that pen in that naked thigh like a trooper, hit the button, and because she told me she heard the click, extracted it quickly only for me to see that the dose button had only dialed down from her dose of 8 units to 6. So I instructed she put the needle in her thigh again, click the button fully, wait 5 seconds and then extract. She was loathe to do it, not because it meant sticking herself again, but she’d been clearly told not to use a needle twice. Wow, since I use my syringes a week or two before changing, I saw again the long journey from novice to old-hand. In again we went and out. This time the full dose dispensed. Mazeltov! Success, and she was smiling. Her high pitched shaky voice calmed to a quiet gleeful whisper and a new insulin-dependent diabetic was born.

Life with diabetes, day 13,140

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What happens when you have a bad cold and sore throat, you’re going twice a week for physical therapy for ankle tendonopathy, your upstairs neighbor had a fire and water is leaking through your kitchen ceiling and the insurance guy has just said, “Better fix this quick or you’ll have a mold problem!”  and you’re worried your editor thinks you’re a ditz while you’re working so hard you feel like you’re running just to stay in place? I’ll tell you what happens, your blood sugar goes up for the umpteenth time.

Ah, but since these are a new grouping of potential causes than the usual, from what is my sugar rising? Which can I change to have it come down again? The cold will tell me in two weeks, the fire damage may take considerably longer. The book issue is an ongoing event till December 15. 

Or is my blood sugar up because of the cumulative effect of all this stress? Or, because due to all this stress I’ve fallen woefully far from my exacting eating regimen, (yes, my knife is edging more of that halvah off that wedge and the rings around my stomach seem to be multiplying), and we know the ankle has kept me off my power walking track for hmm…3 months now…

If I didn’t have such a blasted headache right now I’m sure I could clearly see the answer to my query. Or, maybe not. Day thirteen thousand, one hundred and forty with diabetes. Will this record ever end?

The abcs of helping patients

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Yesterday I had the great pleasure to deliver 50 of my TheABCs of Loving Yourself with Diabetes books to Dr. Gerald Bernstein at the Friedman Diabetes Institute, a free diabetes resource/learning center in Manhattan, and part of Beth Israel Hospital. Dr. Bernstein, Director of the Diabetes Management Program at the Institute, pioneered a major diabetes center in the 90’s in NYC that was eliminated with almost all the others due to financial woes.

Today Dr. Bernstein, Dr. Leeny Poretsky, Director of the Institute, and attending staff, have created a dynamite educational resource above the city’s clamor, where patients can avail themselves of exercise instruction, nutritional guidance, a dietician, educational classes, support and more, to better manage their diabetes. Did I say it’s free?

Bernstein’s Novo Nordisk rep, Stacy Kilkenny, was the little angel who ordered my books for the clinic as Dr. Bernstein wants to use them as an incentive, and reward, to motivate and celebrate patient’s efforts and successes. What an incredible way to think! Bernstein’s other passion, that he showed me, is an oral insulin dispenser that he’s working on with a biotech company; it’s now in trials. It works similarly to an asthma inhaler and, thankfully, is the same handy size too. It sprays a mist of insulin onto your inner cheek, the sprayed insulin is directly absorbed into your bloodstream and working within 5 minutes, it’s also out of your system within 2 hours helping to avoid hypoglycemia. The prototype has already been approved in Equador, so exciting things to come. 

My heartfelt thanks go out to Dr. Bernstein and Stacy, and everyone else at the Friedman Institute, and my hope is that if you are in a similar position to use this book to motivate and reward patients’ efforts, you might just do the same – and don’t forget your purchase makes a donation to Diabetes Research Institute, one of the premier research institutes seeking a cure for diabetes. 

Leonard says learn to love the plateau

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Learn to love the practice

 

I guess I’m into absorbing new ideas these days as my last two posts are about books I’ve read. There’s an interesting idea expressed in George Leonard’s paper and e-book, Mastery – The Keys to Success and Long-Term Fulfillment. Leonard is a social scientist and Aikido master and I’m intrigued by his call for us to get lost in the ‘practice’ and make peace with riding the plateau.

Early in life we are pushed to “do” to “get” and focus on what comes next rather than where we are. We are urged as children to study hard so that we’ll get good grades. We are told to get good grades so that we’ll graduate from high school and get into college. We are told to graduate from high school and get into college so that we’ll get a good job. We are told to get a good job so that we can buy a house and a car. Again and again we are told to do one thing only so that we can get something else, be somewhere else. We spend our lives doing stuff so tomorrow will be better. But where does that leave us today? Sort of checked out from our lives.

See any parallels with diabetes? We are told to control our blood sugar so we don’t get complications, exercise so we’ll lose weight, lose weight so we become less insulin resistant. Of course we need to do all those things, but what if we were also taught at the same time to be one with the doing, enjoy the doing, don’t put all your eggs into the arrival; like a Zen master, see value and pleasure in the practice, get lost in it so that you are in the flow, totally in the moment. If you do that, not only will you be more present in your life but you will be creating the best chance for the positive outcomes we all want, and we may even notice and enjoy the journey.

When you’re ‘in the practice’ you’ll actually taste your food, maybe for the first time in a very long time. You’ll begin to enjoy the nutty flavor of whole grains by paying attention while you eat them, you’ll notice the natural sweetness in peaches and berries. When you exercise from the practice, you’ll feel your body’s strength and agility, its growing power, you’ll notice the endorphin-rush and Serotonin uptake, you’ll feel happy. Controlling your blood sugar when you are in the practice will imbue you with confidence, you will notice your growing capability, you will actually tune in to feeling proud. When we are so focused on the long, far away and abstract goals of living longer, staying healthy and avoiding complications, we are missing the moment, dismissing the pleasure in the moment and the opportunity for peace and pride in the every day practice.

“The real juice in life,” Leonard says in his book, “is to be found not so much in the product of our efforts as in the process itself, and how it feels to be alive.” We are taught in countless ways to value the end product, the prize, the blue ribbon or Olympic medal at the end of an endeavor, that climactic moment, not the pleasure of the moments that lead up to a medal, and then the next medal you might hang on your wall.

If our life is focused on mastery instead of wins, most of it Leonard says will be spent on a plateau–that long stretch of diligent effort with no seeming progress, for there are numerous inherent plateaus on the journey: learning, musing, germinating, reflecting, taking baby steps with only little bursts and puffs of what society deems as celebratory, noteworthy movement forward in-between. How much better if we were taught to love the plateau. If you honor the practice says Leonard you will enjoy the plateaus, “if not, a large part of your journey will be spent in restless, distracted, ultimately self-destructive attempts to escape the plateau to move faster and farther,” hither and thither missing the moment. I hope I pass you on your plateau as I sail by on mine and we are present enough in the moment to wave hello.

 

See doing the work as the road to what you truly want

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A work out for your head

In a book I’ve just read, The Diabetes Lifestyle Book, by three PH.D.s Jennifer Gregg, Glenn Calaghan and Steven Hayes, they examine from a psychological perspective, how we can commit to achieving better health. They employ something called, “acceptance and commitment therapy (ACT)” to move patients through the obstacles that get in their way and talk about how you can overcome your own barriers. If you’ve a mind to do some mind-work, this is a good read.

Here’s an example of mind-shifting from their book– it’s a pretty simple, a gentleman had trouble committing to exercising. He, like many people the authors say was using “weather” as an excuse not to exercise. Ted is fifty-five with type 2 diabetes and cardiovascular complications whose doctors are asking him to exercise. Ted made it clear to the psychologists that he would only walk for exercise and that he wouldn’t walk in the rain under any circumstances.

The authors asked Ted how firm that decision was for him on a scale of 0 to 100. Ted said 100. Wow, that’s pretty firm! Then they asked Ted why he was coming to their clinic. He said he’d been sent by his doctor so he could better manage his diabetes. Then they asked Ted why would you want to better manage your diabetes? Ted said somewhat confused, “to improve my health.” The authors then asked Ted whether he thought he could do things to improve his health even if they were difficult, and Ted said “of course.” The authors then asked Ted “So why would you be able to do difficult things?” and Ted said, “because I want to live a long life to to see my grandchildren, whom I have a special bond with, grow up.

Hmmmm….O.K. Now the authors asked, “What if in order to see your grandchildren grow up you have to walk in the rain?” Ted thought a minute and then said, “I think I need to get an umbrella!” Eureka! The authors then asked Ted again how firm his belief was on a scale of 0 to 100 that he would not walk in the rain. Ted did not even pause before saying “about a 10.” So what happened? The psychologists linked what Ted REALLY wants — seeing his grandchildren grow up — with how he could get it.  That’s what was meaningful to Ted, as opposed to the abstract notion of just being healthier if he exercises.  The book is filled with exercises, examples, linkages and stories like these to help you see where you can make stronger links for yourself, more tightly connected with your desires and values, to better manage your diabetes.

When I give my motivational presentations I always ask people, “Are you spending more time focused on the everyday tasks of diabetes or what the tasks are giving you – better health, a longer life, more energy, more time with the grandkids, etc? It’s important that we see the benefit of all the work we’re doing. Look to the life you truly want to be living and see your diabetes work as the road. It can be smooth or bumpy, depending upon how you regard it.

While you do the work shift your mind from looking down–it’s hard, takes time, hurts, not fair, why me? to up–it gives me more energy to travel, I can wear that great dress at my son’s wedding, and boy, I’m pretty amazing handling all this! You can only start where you are, so start there and don’t resent or beat yourself up that that’s where you are. Enough said, and keep Ted in your thoughts. Right now I imagine he’s racing down the street in the drizzle with a smile on his face because his grandkids are waiting at the end.

My 15 minutes of fame on WBAI radio

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It was great, I was awesome and I get it — you weren’t listening because you didn’t know I was on the radio or you couldn’t tune in when the program aired.

Oh, how lucky you are because any time you chose (within the next 90 days I believe, but why would you wait) you can hear the broadcast by clickinghere.

Jane Seley, diabetes nurse practitioner, and I talk for the latter 35 minutes of the 55 minute show and give you the low down on diabetes and using your emotions to create better diabetes management and a happier, healthier life. Yup, all contained in my book, The ABCs of Loving Yourself with Diabetes. Also available on Amazon. 

All kidding aside, have a listen. I’m pumped and I think you’ll get a lot out of the show. The first 20 minutes of the program if you’re interested featured a nurse talking about how to help loved ones with dementia. It actually was lovely, so if you’re interested give yourself the luxury of the full broadcast. If not, fast forward to between 1/3 and 1/2 into the program and you’ll hear the best Jane and I have to offer. 

Apr

Every day, every moment

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Here’s the truth today, this moment, April 7th, 8:30 PM. As I’m eating dinner I’m thinking do I need to take a little more Humalog to cover the square of Lindt’s 85% chocolate I just gave in to or will my glass of wine balance me out?

Did the handful of cooked kidney beans I was noshing on before I had the time to get the fish in the broiler really, really raise me enough worth bothering to cover, after all I did walk six blocks to the library earlier in the day which was an impulsive, unexpected move on my part.  

Is there such a thing as an impulsive, unexpected move when you are insulin-dependent? What does six blocks buy me? .25 of a unit of Humalog? Need I factor that in if I don’t want to lose my kidney function? 

Every day, every moment, I have to think whether or not I need an insulin injection or so it feels; it’s not just injecting before meals as much as what have I just eaten and do I need to cover it? Am I going to walk down to the bank this afternoon? Damn, I don’t know where my blood sugar is right now, and at this moment I don’t want to have to care. I’m tired.

36 years tired, 24 hours tired, every 60 minutes tired. I sense there are many of you who know of what I speak. I will keep my chin up, but tonight, right now, I’m just too tired.

From Spokane to San Fran – On and off my pedestal!

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Falling off my pedestal, ouch!

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Last week I flew out to Spokane to deliver my A1c Champion presentation at a health fair. 1,000 people were expected for the event. You know the local staff from Rockwood Clinic were working mighty hard to pull this off. And they did, until the last minute when an unexpected snowstorm blew us all just slightly off course. ‘

Champion riva’ at least got in from New York in time to enjoy a fine dining experience with three of the hosts the night before. ‘Champion Greg’ who flew out from Virginia, hit a snag changing planes in Cincinnati, and arrived 5 hours later. But Greg has never suffered for energy, or spirit, and joined us for dessert. By time we all left the restaurant and turned the three blocks back toward our hotel, we were walking into the beginning of a snowstorm.

Wide awake at 4 AM, peering out my hotel window, there was 3” of the pristine fluff on the ground already and falling flurries silhouetted against the street lamp across the street. At 7:30 AM when one of the hosts came to escort Cinderella (me) to the ball (health fair) I was hoping we weren’t going to crash en route due to the semi-blizzard conditions!

But ya gotta love Spokaners, at least 600 people managed their way to us and got a little learning. I addressed about 75 fellow type 1s and Greg commanded the auditorium filled with about 250 type 2s. Now, head in the clouds, I looked outside to see the snow had stopped and was actually melting at lightning speed. 

Cinderella next caught an economy coach seat to Oakland, CA for 5 days of play. While there, I had the delightful opportunity to lunch with the editor ofDiabetesHealth magazine. After we were seated at the Tadish Grill, great old seafood house by Embarcadero, he looked across the table at me with deep brown puppy eyes that said, “Tell me, goddess of diabetes, tell me all you know.” What more does a goddess need? So I listened to the sound of my own lovely voice as I gave him my pearls of wisdom.

I reminded him to re-ignite his passion to manage his diabetes by remembering what he loves doing and doing it, to think back to the “can-do” spirit he had when first diagnosed and being rewarded for his efforts with an A1c of 6, by realizing healthy eating is a ‘lifestyle’ not a ‘diet’ and to appreciate that diabetes is an every day affair, but manageable. It was clear he appreciated the wisdom that flowed from this goddess.

Then returning from lunch late that afternoon I tested my blood sugar and it was 170! Once empty of expletives, I calculated my carb load from lunch – ahi tuna and salad and one piece of bread didn’t add up to leave me as high as 170, particularly since I’d covered the bread with my Humalog. Hmm…was it that little bit of mango hiding in the champagne dressing on the tuna? Was it being out of my routine? I haven’t walked since I left New York. You know they arrest you if you do that in California. Mind you, with my ankle still in a boot cast, I’m not walking much, but I do manage to clop through a half mile or so at home. Was it the extra fruit I’d been eating at breakfast lured by California’s fresh and gorgeous bounty of strawberries, kiwis and melons that I never get in New York? I just didn’t know. OK, take a correction injection. Before bed I was 120, fine, I drop about 20 – 30 points overnight.  7 AM – 170 again! Yikes! How can I be going up overnight when I always go down? What’s going on?

I checked both my Lantus and Humalog vials to see if they were low which would mean I’d been using them more than a month. Nope, both nearly full. I scoured my mind for carbs I may have overlooked. Nope. I’m already over jet lag so those floating three hours that somehow have to be calculated for but no one really knows how, no longer count. “Shite!” as the British say. Having gone through the check list, there was nothing more to do but hope these readings were aberrations, watch what I eat even more closely, monitor for corrections and hope once I’m home all goes back to normal. I am happy to report so far mid-way into my first day back I seem to be back to my “normal.”

Pulling myself up off the floor, one should never put anyone else up on a pedestal for diabetes-care, because, I just about broke my neck falling off of mine. Diabetes is a daily affair, as I tell my audiences, our bodies are all different and there’s no such thing as perfect. And boy do I hate that because “perfection” is my middle name. The tireless, everyday calculations usually turn out the way I expect, but sometimes, they just don’t. Come to think of it, maybe it’s the canker sore I’ve had the last 5 days that’s raising my blood sugar… hmmm…could be, or the….or the……and on and on and on…………….

A weak tendon can hurt your heart

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I almost had a meltdown in my podiatrist’s office this morning. Dratty, ratty tears ready to spring forth as he sliced into me with his diagnosis. Yes, yes I know I have tendonopathy, an MRI told me so last week. After an hour in that MRI machine the report said “weakness in ankle tendon” more of less. But it wasn’t that knowledge that cut, it was the reason my doc presumes I have this weakness. As he said, “Well, if we look at the possible causes,” and mind you I really like this doctor, “there’s aging and foot structure, and of course your diabetes.” Ding, ding, ding. 

There it was – again, and again, and again it rears it’s ugly little head. My foot prescription is another two weeks in the boot and then an ankle brace and physical therapy. But where’s the prescription for my aching heart? Walking is my salvation and solution; I rely on it to stay as healthy as I am. The chance that I can’t continue my power-walks cuts like a knife, as does the knowledge that as good as I am, as great as my diet is, as remarkable as my A1cs are in the 5s, no matter how hard I try to keep the numbers all in line, diabetes can cause anything any day. Including meltdowns no matter how swell I live with it most of the time. 

The answer? I told my podiatrist, “Next time I see you if I ask again what caused my ankle problem, you are not allowed to mention the d-word. You must tell me aging is the culprit. I don’t mind that since everyone I know is aging. We had a laugh and he got, I mean really got how telling a patient fairly casually that their diabetes might be the cause of something can be highly emotionally loaded. So maybe I used my “teach one person about diabetes” command from Tuesday’s Diabetes Alert Day today. 

Just to let you know tomorrow I fly to Spokane, Washington to deliver the A1c Champion presentation at Rockwood Clinic where 1,000 people are expected. Then for me it’s play-time in San Fran. This blog will go quiet for about 10 days.