From time to time I will post an interview I've done, something I've learned, interesting books I've read or something else that I hope will offer you value.
riva greenberg
From time to time I will post an interview I've done, something I've learned, interesting books I've read or something else that I hope will offer you value.
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.
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.
Well, I never set out to do a diary here but it's beginning to feel that way a bit. A blow by blow of my days and weeks. This morning at 8 AM the doorbell rang and two construction guys walked in to examine our kitchen ceiling. Over the weekend our upstairs neighbors had a small fire on their rooftop garden and over zealous firefighters unintentionally hosed the place down so vigorously her floor is curling, half her walls have been removed and she's been drying out her apt for the last week, and of course it's leaking into ours.
So, our kitchen ceiling has to come down, humidifiers will run for three days, they'll check for moldy sheetrock etc. I ask the pertinent questions like will they replace the ceiling? My husband asks, "Will we be able to use our kitchen? My wife's diabetic and has her supplies here, her insulin in the refrigerator and has to get to food." So nice, I wouldn't have thought of it till they were half way through ripping out the rafters with buckets of water coming down. So here's a celebration to partnership.
I don't know how it's going to go, but I do see how one's diabetes life permeates life at large, the one that's not always neatly contained in our daily routine when all is going according to plan. So, my blood sugar meter's in the bedroom, a few syringes, the insulin's still in the fridge and if need be, I'll fight my way back into the kitchen to get it (in all honesty, they did tell me the kitchen would be accessible throughout the procedure, I'm not perfectly crazy) and, oh yes, we may have to move out for 3 days while the humidifiers run. We've just about lost a week's sleep from the drone of our upstairs neighbor's thrumming machines. I think this is true water torture, and now our own right will be happening in our kitchen, only 15 feet from our bedroom. Think I'll go pack my bag now. Sure could use one of those nifty diabetes bags now for all my supplies. Maybe my next birthday present, along with a new diamond wedding band to commemorate such a supportive husband.
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?
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.
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.
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.
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 clicking here. 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.
For those of you in the New York area this Friday, April 11, yours truly will have 15 minutes of fame on WBAI radio, 99.5 FM on your dial. The program is called, 'Healthstyles' and we'll be discussing the emotional side of living with diabetes plus I'll be talking about some of the lessons from my book, The ABCs of Loving Yourself with Diabetes.
While the show airs from 1 PM to 1:55 PM, I've already been told I'll be featured along with my pal and diabetes educator, Jane Seley, about fifteen minutes into the show. For those of you who can't make it to the radio at that time, or if you live beyond the tri-state area, the program will be available afterward on www.wbai.org and Pacifica Radio. If you can tune in, I'm sure it will be interesting, particularly since right now I have no idea what I'm going to say.
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.
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 of DiabetesHealth 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…………….
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.
Today is something I just heard about a few weeks ago called 'Diabetes Alert Day'. Apparently it's the 20th year the American Diabetes Association has been recognizing this day about alerting people how to prevent type 2 diabetes.
The reason I became aware of Diabetes Alert Day is because I was asked to give my A1c Champion presentation today as part of a larger diabetes health event at a hospital in Brooklyn. A week ago I was told the event was canceled. Frankly, I don't know why but I do wonder why and think it's a sad statement that we're canceling more information getting out there about diabetes.
I read on Amy Tenderich's blog, DiabetesMine, this morning that you might want to be your own spokesperson and today tell two people about diabetes. I think that's a great idea. Here's another: Since they cancelled Diabetes Alert Day, let's cancel our diabetes today.
By that I mean, today do what Dr. William Polonsky, CDE, psychologist and founder of the Behavioral Diabetes Institute advises we should be doing every so often to avoid burn-out - take a "mini-vacation from diabetes." Put down your fears (that's my advice), maybe test once less today, have that bagel, and give yourself a break.
Until we can cancel diabetes for real, I think we have to give ourselves a pink slip every now and then.
If you read my article below and came up scoffing, “Of course I’d give up my diabetes!” I get it. Of course I do. Hold that thought, and let me introduce another. I'm participating in Oprah's online book class reading Eckhart Tolle's book, A New Earth, Awakening to Your Life's Purpose. Every Monday night they are teaching a million people around the globe that the only thing that’s real is this very moment, and the only thing that creates happiness is accepting this very moment completely as it is. That doesn't mean a new watch, house or mate, perish the thought, might not make you happy, but that happiness is not lasting. You know that; think about the things you couldn't wait to have. You got them, they made you happy for a while and now you barely notice them. Of course, this does not go for your mate, or maybe it does.
Anyway lasting happiness comes from being at peace and accepting how this very moment is. That leads me to say this - in this very moment you have diabetes. If you have type 1 diabetes you have next to no "choice" about “giving it up.” If you have type 2, you can affect it, yet not lose it. What you do have is a choice about whether you accept your diabetes in this very moment. How you see it, react to it, be with it, talk about it, live with it, this is your "choice," and, your seat of power.
Language is a powerful influencer of how we experience life. How do you talk about your diabetes to yourself and to others? Words flood into our brain so quickly we don't even realize we are putting them there. Unconsciously they create a picture, emotions attach to this picture then we base our actions on this. The good news is we can change this chain of events with awareness and a desire to do so.
Just look at some of the words around diabetes and how they color things. We "test" our blood sugars. Naturally you feel like you get an 'F' when you don't like the number. Tell yourself instead that you're "monitoring" your blood sugar so you know where you are and can take appropriate action. You're not "Failing" but "gathering information." You're not "judging" yourself for the number but "learning" from it. Do you call yourself "irresponsible" or "stupid!" when you don't manage your diabetes the way you think you should? Do you tell yourself, "I'll never get this!" or "this is too hard, forget about it!?" and then give up? See the connection between what you tell yourself and what you do. While this is probably uncomfortable right now, say to yourself, "I have a good life and diabetes doesn't take away from that. In fact, it's actually given me something that I appreciate." Do you laugh at this or immediately dismiss it because you think it could never be true for you? How you relate to this statement is likely showing up in your life. I'm not saying diabetes is a joy-ride, but how we look at it and talk about it -- to ourselves -- and to others, creates our experience of it, and, frankly how we manage it.
Changing your words is one way to begin improving your management. You can also get similar results working in reverse. Take more positive actions no matter what you think and tell yourself right now. Taking more positive actions will begin to give you better results. This will cause your beliefs to start changing and as day follows night, your words will become more positive and supportive. Remember the old line, "A mind is a terrible thing to waste"? It was a commentary on how drugs destroy our mind. Frankly we waste our mind every day if we fill it with junk words and thoughts. Like drugs, we are completely under their influence.
My motto, "thrive" over "survive" living with diabetes is a bit of simple, catchy wordplay, 'tis true, but it's also a powerful affirmation. Today watch what words you put into your head and say to others. Do your words support what you want? If not, try speaking some that do. They may feel disingenuous at first but over time they will start to live in you. Different words will open a new window and instead of all the garbage that typically flies in around you, you might find something absolutely amazing and beautiful alights on your windowsill.
A few months ago I interviewed a young woman who had type 1 diabetes, and then she didn't, and then she did again. She was "cured" of diabetes for a time through two islet cell transplants. She had an infusion of perky insulin-producing islet cells, which meant that after taking insulin for almost twenty years she didn’t have to take it anymore. Unfortunately, after 18 months the cells began to fail and she was back on insulin. When we spoke she had listed herself on the pancreas transplant list to get back what she called the “freedom” in her life, that of being insulin-free. I thought it extreme to undergo the knife in a risky procedure where you’d have to take auto-immune suppressant drugs the rest of your life and the transplanted pancreas would only be good for about 10-15 years, if lucky. She, on the other hand, had difficulty imagining how I live relatively harmoniously with my diabetes. And, she posed the question to me, “Would you give up your diabetes if you could?”
Before I go there I need to give you a little more background. I interviewed this woman several months ago. Then when I released my new book, The ABCs Of Loving Yourself With Diabetes, thinking she might profit from many of the lessons it contains, I emailed her a note. She sent me this email in return, “FYI - I have taken myself off the transplant list for the time being. After meeting you - I decided to give it a shot being diabetic again. It is not always easy - ups and downs (as you know) but I am officially diabetic again.”
I was stunned frankly because at the time of our interview she had said, “If a new pancreas gives me only 5 years of insulin-independence I will take it. Five years of reversing complications makes the risk worth it to me, to be free." Yet now she was telling me she had reversed her decision to get a new pancreas. Before the islet cell transplants, this woman suffered from severe hypoglycemic unawareness - she couldn't feel when her blood sugar was dangerously low. She had countless episodes in the last ten years of nearly falling into a coma; it could happen walking to work, driving a car, while in a meeting or lying in bed. While the islet cell transplants didn't keep her insulin-free in the end, they did return her warning symptoms of low blood sugar. "Since the islet cell transplants,” she said, “my husband has not had to wake me up in the middle of the night to see if I’m still alive. He used to do that every single night.” So for her, the islet cell transplants created a dramatic increase in her quality of life. Of course I could understand the decision to have that done. But now that she gets the warning symptoms of low blood sugar and is like the rest of us ordinary type 1s on insulin, was a pancreas transplant worth it? There's the risk, and when you think about it, as of course I began to, who would you be without your diabetes? If you’ve had it a long time, like me it’s probably shaped your habits and become part of your identity. Early on in our talk she was adamant that the freedom of being insulin-free was worth the risk of a pancreas transplant. How giving up diabetes affects identity, we probed a little later.
She got type 1 diabetes as a teen and grew up in a house where she was not fussed over and so became hugely independent, responsible, hard-working, earnest and a perfectionist at a very early age. It serves her now working toward partnership at a prestigious Manhattan law firm. In fact, at thirty she has all the earmarks of a hard-driving, intelligent, ambitious fast-tracker. Sitting in an office high atop Manhattan, I felt utterly out of place in my opposite lay-back researcher and journalist mode, and faintly amused as she checked her blackberry every ten minutes. She was well-thread and somewhat officious. But there was also a little-girl quality, a kindness in her quick apology for checking her emails and an openness I wouldn’t have expected.
She gave me two hours of her time that morning, precious time, and it was toward the end that she told me she'd placed herself on the pancreas transplant list. At that point I asked, “Since you now get symptoms of low blood sugar why go through this surgery?" She said, “At least I could say I did what I could to be free of this disease. There’s something about being free from diabetes that gives you the courage to try again. I also want to be part of the research, to be able to speak about it and show kids that being-insulin free is possible. Since I was 11, when I asked the nurse, “Will I have to take shots for the rest of my life? and she said, “Yes, diabetes is incurable,” I thought, I’m going to prove the doctors wrong someday.”
Then she asked me, “Would you try to become insulin-free if you could?” Interesting question. I don’t suffer from hypoglycemic unawareness so I wouldn’t be a candidate for the islet cell transplant, but if I did I would have made the same choice to do it as she did, that's a no-brainer. However, if my diabetes then came back as hers did, along with the warning signs of low blood sugar, would I go further to be diabetes-free? “No," I said, "I wouldn’t have a pancreas transplant. It's not worth the risk to me and the short shelf life.” And then I thought further: What would it mean to give up my diabetes?
A fellow A1c Champion told me last year if they could take away her diabetes she would not do it. She gets too much pleasure and sense of worth from her work now helping others with diabetes. Would I give up my diabetes? It’s a fantastic notion to one day not have diabetes anymore. To eat whatever I want, whenever I want or not at all. To not take shots or finger pricks. To not consider if I’m walking today. All kinds of thoughts tumbled into my head. Those were all pluses, but I also thought I would fear gaining weight if I didn’t have a built in reason to watch what I eat and exercise the way I do. My diabetes is now my work, I’d be giving that up. Then there are the friends I’ve made because of it. To be just like everyone else, no longer special from hefting this extra burden and feeling oh, so, virtuous. What would that be like?
“When I listen to you,” she said, “I hear that you’re resolved with this disease. You say, “This is what my life is and I have learned to navigate this way. It’s interesting for me to hear your perspective, it makes me happy to hear someone can do this.” I knew she meant it, her voice became softer, slower, and I could see her thinking about a similar possibility for herself.
She also told me toward the end of our talk that diabetes had also given her something, “It’s so funny because I want to get rid of it so badly,” she said, “but it’s who I am too. It’s a hard disease but it’s changed me for the better I think. I wouldn’t be such a good person had I not had it. As much as it’s been an enemy it’s also been a friend. I don’t think I would have accomplished all that I’ve accomplished. I often say diabetics are typically more motivated, capable and amazing, because they have to overcome so much to achieve what they achieve, it makes one a better person.
“I’m wondering,” she continued, “if you would want to experience being free from the disease or if the disease has become such a part of you that you would miss it in some way? This happened to the first transplant patient at my hospital. He just let the new cells die. It was like he lost himself when the disease was gone. The disease was who he was and he couldn’t deal when he didn’t have it. I wonder," she continued, "if in my own life I had made the disease part of me more, maybe I'd be better capable of dealing with it. When I was younger I was embarrassed having diabetes because it meant I wasn’t perfect. I didn’t want to admit it even to myself. But you probably can’t understand why I feel this way about a transplant.”
I said it was hard for me, and then I gave her my answer to her question, Would I give up my diabetes? “I don’t know,” I said. I suppose if you tied me to the train tracks and made me say “yes” or “no” before the train arrived, I’d give you a better answer, but for now that’s my answer. I don’t think of myself like the young man in the hospital she described who couldn’t let his identity as a diabetic go. I’m just not sure if the choice were really available what I would do. I can imagine my list of pros and cons might be of pretty similar length.
In any case, when this woman’s email crossed my inbox not so long ago and she told me she had taken herself off the pancreas transplant list, I was very moved that she found something in me and how I live inspiring enough for her to re-think her decision. I don’t pretend to know what’s best for her nor flatter myself that I alone was her motivation. I sensed although she presented a firm front that she was struggling with her decision when we spoke. But if I gave her a snapshot of life with diabetes where one can find peace, then I’m grateful.
Would you give up your diabetes? Your knee jerk reaction is likely “yes.” But when you think through it you might find a very intricate web of emotions that reveal just how much a part of you it has become. Anyway, something to think about, as I hope this blog always offers you. It would be nice to find out in a year how she feels about her decision. In the meantime, I’d love to hear what your decision would be and why.
I haven't mentioned it before but 5 weeks ago I hurt my ankle. Really hurt it. I either tore a tendon, tore a ligament or have a severe stress fracture. Although I've been to my podiatrist twice now, the diagnosis is still unclear. The X-ray showed no break and while the doc didn't feel I needed an MRI, I figured if my insurance paid for it I did. I want to know we're doing everything possible to get this fixed as quickly as possible (which already seems impossible after 5 weeks) because not walking is having several unpleasant effects on me.
1) If I ever needed confirmation that I'm more insulin-sensitive when I exercise I have it. I've had to up my Lantus from 12.5 daily units to 14, and add an extra unit or two to most of my boluses. Granted, I use little insulin compared to many, but for me this change is no less significant or upsetting. My blood sugar's been far less well controlled and predictable. The first week figuring out the new numbers was an exercise in frustration, irritation and downright pissed-off-edness.
My one hour walk around the park I saw, plain and clear, had been performing blood-sugar control magic. Part of that magic was my numbers were better the whole day, and relatively similar day to day, so fairly easy to predict. There's the second unpleasant effect - losing that predictability. Once you get your routine down, you know that having it wrecked feels like starting all over again from the day you were diagnosed. Yet I didn't know just how unprepared I was for retooling again or how much it would bother me. By week two, maybe three, I had made the adjustments, but frankly still resented that I'd had to. Ah, that pothole again I spoke of many, many posts ago. You're zipping along and then wham, something unexpected causes you to go on tilt again.
Unpleasant effect number 3) While I don't think my one hour walk causes any weight loss, it does keep my weight in check. Now, in contrast, I feel the fat deposits around my stomach and thighs swelling. My resentment of my body's failure is now on two fronts, foot and fat. Of course that's on top of the underlying resentment - that I work hard at having good control and being immobile has made my diabetes uglier to manage. My resentment obviously peaked two night's ago when I ate everything sweet in my house: gingerbread, chocolate, halvah, and washed it down with too much wine. That was me hitting the brick wall. Thank god that's over, now I can move on. Of course after I tell you the last unpleasant effect - my mood shift.
4) I've basically been a very unpleasant person around my husband, whiny and petulant. Good soul that he is he hasn't filed any papers, instead he just left for Holland. Of course, he works there so I don't think the two are related. But being housebound and not being able to scoot from here to there, having lost an enormous sense of freedom and spontaneity, not being able to clear my head outside my immediate environs, see endless sky and be a part of life all around me, has deadened something in my spirit. We are social animals, after all, and my social life is largely apartment-bound.
So, what's the message? I don't really know. Am I just verbally vomiting? Maybe. Interesting though that I picked the day I'm actually feeling better to write this. Maybe this little patch of light creeping into my head today is offering such relief and hope that I dare to look at how poorly I've been feeling, and get back on track.
You should know, while I preach looking for the good in things, which I absolutely believe is the way to go, I am like you a student and a work in progress. So putting my own, look for the good, words into practice I could say from this little experience: 1) I have more compassion for people who are struggling with their weight or are incapacitated in some way. I really, really do. 2) I am reminded (seems to be one of my life lessons) that I don't have to overachieve to feel I've achieved something. My ankle debacle came from taking my daily walk too aggressively - not missing a day - walking faster than usual - walking another hour most days as well - and then this overloaded ankle twisted in a pothole on a city street. All that effort I put into my walking to more aggressively keep my weight in check, all that speeding up has brought me to a standstill. That concern with weight comes from having been a heavy teen. My, my, such old programming still exists! That concern with overachieving is just more of the same entrenched, old programming. Seems my head needs to be re-booted. Well isn't my current condition delivering the perfect symbolic message!? (See photo)
Then too, maybe I caused this because in the world of Louise Hay, spiritual teacher, my world is shifting rapidly and I am a little frightened of all the new things I'm taking on and all the new places I'm going. Did I slow myself down so that I could control it all, because I am an uber-controller? Not of others, just myself. "What I know for sure," as Oprah would say, is when I'm faced with big, new things that feel overwhelming, my first impulse is to freeze and fear. But then what gets me through is to chunk it down into small steps. To take one small step at a time and create a small success. One step, one success builds me a road to the next step and the next success. Just writing that is soothing. So I could say tallying my accumulated good the last one is, 3) I have been reminded that this small-step approach is what I need to do with all that's in front of me.
After all, the only race I'm in is the one I've created in my head. I guess my deeper wisdom knew that I needed to remember that. And like the tortoise and the hare, sure and steady wins the race. I just wish all this knowing had come to me in a dream, while slumbering peacefully in my space-age tempur-pedic bed, not in a pothole on 81st street. Then again, I could choose to see this whole affair as a symbolic, celebratory "kick-off" of all the many good things yet to come this year.
This Wednesday evening, 6-9 P.M, Divabetic is hosting its national Makeover Your Diabetes event at Gotham Hall (1356 Broadway @36th Street). I'll be there so come on out and glam, learn, have fun, mix & mingle and get your questions answered by diabetes educators. Make sure to pre-register.
In my last post I touched briefly on the importance of the systems in your life to support your diabetes management. Systems-talk is generally heard relative to companies seeking ways to improve processes in order to increase profits and save time and waste. But doesn't it make perfect sense that the same holds true for managing diabetes? Our systems either make us successful with less cost in time and energy, or foil us. Back to the company analogy, no matter how dedicated employees may be, if they're working within a system that doesn't support their intentions and efforts, they won't accomplish their aim. Similarly, no matter how good your intentions, if your systems do not support your best efforts, success will evade you.
What does this really mean? We all have some kind of system we work within for the daily or weekly tasks we perform regarding our diabetes management. For instance, you have a system for feeding yourself - it may be skipping breakfast, eating a yogurt for lunch, then a candy bar in the mid-afternoon, and having dinner at fast food drive-ins half the week and pulling frozen entrees out of your freezer the other half. This system doesn't support having your best health, let alone a desire to lose 10 pounds. A better system would be having a healthy breakfast, a larger healthy lunch and skipping the candy bar, and, going to the supermarket once a week to bring home nourishing foods. You might cook a week's worth of dinners on the weekend, freeze them, and one day a week greet the loud speaker at Burger King, McDonalds, KFC or your fast food joint of preference.
Trust me, you have a system for everything. Take refilling your meds. It may be you open your pill bottle and you notice it's empty, you grumble or shriek and then go to the pharmacy or call your doctor. Here's another system that might be less stressful: when a new bottle of pills come into the house, if it's for a 90-day supply for instance, write on a calendar 75 days from that day, "Reorder meds."
Think about how diabetes fits into your day, or doesn't? Is it the last thing you always seem to contend with? If so, your systems are not very efficient or supportive for managing your diabetes. How about your emotional system? Do you let loved ones help you in some way or shoo them away? Do you do enough of what you love to replenish your energy and positivity? If not, can you schedule that into your week?
The good news is you designed your systems, consciously or unconsciously, and can change them with a keen eye, some creative thinking and practice. Look specifically at what you're having trouble with and then look at the system behind it. For example, if you forget to take your pill before lunch because you're always stressed at work, or running into a meeting, how can you remedy this? Can you put a note where you'll always see it just before lunch? Dan you keep an extra pill in your wallet if you carry your wallet or purse into meetings? f you've been trying hard and not doing terribly well, don't blame yourself, blame your system and then revise it.
My Systems
My system for taking my blood sugar approximately 5xday includes keeping my meter always in the same place, on my kitchen counter, my test strips always in my meter case, my lancing device always on my kitchen counter. I work at home and this works for me. If I'm out of the house, I take my smallest meter with me so I can always test.
My system for eating is to buy mostly fresh vegetables, fruits, chicken and fish and do most of my own cooking. Every morning I make a bowl of steel cut oatmeal. Almost every lunch I have a spinach salad with an assortment of veggies, beans and some feta cheese. I mostly steam vegetables and broil or saute meats and fish for dinner. I eat beans in replacement of higher carbs, for instance, rice, pasta, potatoes. The few freezer products I use don't have any added butter, cream, etc. I use vegetables a lot as foods to fill up on, and crunch on, when I need something crunchy. I like nuts for this too, and yes, I have to be careful not to sit down with the whole jar. I notice when I run out of healthy foods, I begin to reach for less healthy foods (my husband's stock of crackers, licorice, etc) so part of my system is to always try as I can, keep an adequate supply of healthy foods in the house. I make sure I have 85% dark chocolate in the house and cocoa powder so when I need a sweet I can satisfy my sweet tooth and not go crazy. If I don't do this, I'll eat everything in my house and still feel unsatisfied.
My system for exercise is to every morning take a one hour walk around my local park typically from 9:30-10:30 A.M. Just after checking my email and before getting into any major project. If I miss my walk because I have an appointment, I try to fit it into the late afternoon. If my appointment is in the city, I'll walk 40 or 60 blocks when I get out of my appointment to a subway station so I fit my walk in that way.
My system for emotional health includes doing lots of things I really enjoy that make me feel purposeful, and I get the rich reward of serotonin, the feel good brain chemicals from helping others. I spend time with friends who nourish me. I love reading and movies and indulge in both. When times are tough, I reach out to my partner who always listens and then see how much good I still have in my life. If all else fails I do something guaranteed to bring a smile, look at the pictures in my wedding album, call a dear friend across the country or just leave my house and go somewhere else from where life looks different.
I'm only telling you about my systems to give you an idea of how systems work. Admittedly, I have a lot of lattitude working for myself and working at home. I don't want you to compare what you to what I do. I want you to look at your systems and your life and see if your systems support your best efforts and if not what can you do to improve them?
Here are some questions to stimulate your systems-thinking:
Q: Where are my supplies? Are they handy? As I said my meter is always on my kitchen counter making it easy to find and grab, no searching that might lead me to say, "oh what the heck, I'll test later."
Q: Am I always running out of my meds or test strips? Why? Can I guesstimate when it would be time to order more and work out a system for this? Is my husband or wife always at me about this and so do I put off reordering my meds just to bug him or her? Can I remedy this by having a heart to heart talk with my loved one and then do better for myself?
Q: How can I avoid all the tempting foods always at work from parties and meetings? Can I keep a healthier replacement treat at my desk, or give myself a reward when I pass up temptation like a movie or little trinket?
Q: I only seem to be getting to the gym a third of the time I'd planned because work or family obligations get in the way. Can my family help pick up some of the load by taking over some simple chores?
Looking at your systems, start with the assumption that it's possible to refine them. And remember, to improve you can't do what you've always done and expect different results. Sounds like common sense, but many people will often spend their energy trying harder in a failing system than change their system.
There is a slowly emerging trend in chronic illness, very slowly emerging, but you can see elements of it here and there. I have referred to it before in books I’ve read like Richard Cohen’s Blindsided about his multiple sclerosis and his newest book, Strong at the Broken Places, that profiles people with a variety of chronic conditions. There's Jill Sklar’s book, The Five Gifts of Illness about living with Crohn's disease, and now my own book, The ABCs of Loving Yourself with Diabetes, featuring a new approach to living with diabetes.
The emerging trend in chronic illness has various components. Here are some of them in no specific order:
1.To live with illness from a different perspective - that of using your illness as a catalyst to find greater joy, purpose and meaning in your life.
2. To see the patient as the central figure in man