Diabetes bio: The many people diabetes has made me

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I’ve been thinking recently about where I am in life and how I got here. How it’s so different than where I expected to be, and, that diabetes is at the helm. So I thought I’d trace my trajectory and spend some time in reverie.

Early days – on the boardwalk in Brooklyn with the folks. Guess I was a little toughie from the start looking at that expression: Diabetes in store? Sure, I’ll show you! Of course, not first without some trying decades of denial, distress and dullheadedness.

18 – Life takes a dramatic turn: surrounded by grey cubbyhole lockers and a woman who has numbers on her arm lying in the next bed. The hospital is so understaffed I run to get her meds from the nurse when she’s in pain, she’s already seen enough pain, it dwarfs my own, almost. What will happen to me? Boxes of vials and syringes go back to college with me, yet little understanding.

25 – First job in NYC, party with friends, diabetes not a subject for mixed company–me and anyone else. No meters yet or knowledge how important tight blood sugar control is. Only thing I remember from that first doctor in the hospital was all the awful things that diabetes will do to me–too much, can’t think about it. Much more plagued by what I’m going to be when I grow up.

35 – Living and working in Japan. After years conflicted about being an advertising writer with all its b_llsh_t, I love that it takes me to Tokyo. Didn’t love that first day in the company clinic when handed a giant bottle of alcohol (only big thing in Japan) and bag of cotton puff balls, “What, no alcohol swabs?” I asked. That’s when I stopped using alcohol altogether. Other news:  ate far too much rice, but who knew?

39 – Return from Japan. Early mid life crisis looking for my life partner, who’d guess I already knew him? Begin telling extended circle of friends that I have diabetes. Took a long time to get over that feeling of being “damaged goods.” Living in Asia six years helps you get over most things, or is it that I’m approaching 40?

47 – Lose my job a week before I’m having diabetic frozen shoulder surgery. Go to a diabetes educator for the first time…hmmm…could this be my new career I wonder? Now in full-blown mid-life crisis. O.K., so a little late.

48 – Marry my partner in life – and in diabetes! Overwhelming for someone going it alone for so long. And, to my surprise, I turn embarrassingly shockingly anxious if a “bad” number comes up on the meter in front of him. Don’t worry, I’m over it. For those in doubt that someone is waiting for you diabetes and all, read this.

49 – Daily walks around my local park for exercise and clarity, still pondering what do I want to be when I grow up? An unsuccessful, half-hearted job search causes me to really search what I want to do with the second half of my life. OK, I’m being generous here …maybe

50 – The husband suggests I write a book about having diabetes. Puleeze, who would read it? Then suggests, “Interview other people with diabetes and tell their story.” Brilliant idea and don’t you know it begins to form my network of fellow diabeteers and diabetes professionals.

51 – First visit with an endo in I don’t know how long. He says I’m doing great, finally (hmm…after 32 years?)  A1Cs in the 5’s, due to daily power walking, eating less and vacuuming carbs out of my diet. Yet, complications from first dozen years of uncontrolled sugars still knock me for a loop when they come: partial hearing loss which brings with it unnerving tinnitus, slow-growing cataract–first time eye doctor doesn’t praise my incredibly disease-free eyes–on Synthroid for thyroid deficiency, but my neuropathy’s hardly there anymore, my diabetes teaching has launched a new career and I’m pretty sure if I maintain this health regimen and purpose of heart I’m going to be one of those long-lifers. If a crazy person doesn’t get me in the subway first.

52 – Decide career as a cde is not for me, my interest is more emotional than medical. Go back to school for six years to be a diabetes shrink, hmmm…I don’t think so. Instead I get trained to deliver A1C Champion presentations inspiring other patients to take better care of themselves, and hit the road. 

54 – On a roll living the life of an overworked executive without the office, salary, secretary or bonus. Instead fitting doing the laundry, food shopping, cooking and housecleaning into my overly-busy, lovely life: My self-published book, The ABCs of Loving Yourself with Diabetes is out there. I’m currently writing a book debunking diabetes myths to be published fall 09, I’m thick as thieves with an extremely generous network of diabetes specialists–well, c’mon, they return my phone calls–and in my spare moments I’m wondering how I got here: from that boardwalk in Brooklyn through the years of ignoring my diabetes, feeling like “damaged goods,” letting it into my life to making it my life, oh yes, with jobs come and gone, boyfriends come and gone, self-worth high and low, tearful chats with friends when diabetes scared me, the last one outside the train station in Paris, and extended work stays in Tokyo, Hong Kong and Sydney. How did I get to here, to the bench I sit on now also in Brooklyn with my husband drawing up mind maps and future plans amid my coaching others, chatting with my book agent and speaking at health fairs around the country. How have the puzzle pieces fallen together to answer the constant questioning, “Why am I here?” “What am I supposed to be doing?” “How can I help others?” My husband keeps reminding me it wasn’t pure luck that has brought me here as I have a tendency to say but work, determination and tenacity. I suppose it’s a bit of both.

By time you’re this age you learn life is a process. The husband also says you can’t connect the dots until you’re in front of them. Like the fact that in my twenties I left advertising to pursue my heart’s desire and wrote and illustrated  inspirational greeting cards. Twenty-five years later the progression of those writings and drawings became my The ABCs Of Loving Yourself With Diabetesbook. Like the fact that I spent three years participating in personal development seminars including working for the company and now I draw on much of what I learned and teach it to others. As the expression goes, “luck is when opportunity meets preparedness.”

Diabetes, like life, is a process too. You pull the strings that speed and slow the process. Keep seeking, keep reaching, keep looking, keep learning, keep doing and chances are one day your life will surprise you. Life can be good with diabetes, don’t stop searching for how. Signing off now, another myth to draft, another expert to call, another day to marvel at the fact that my blog just got picked up by a web site that’s all diabetes news, all the time, and woo hoo, there’s little ol’ meway down at the bottom.

Where’s the humanity in our health care?

 

Many of us would agree it doesn’t feel like there’s a lot of “care” in Health Care anymore. HMOs, Health Maintenance Organizations, that most of us probably participate in, were set up as cost-saving vehicles not care-giving vehicles;  they work more or less until you really need some kind of care–I can’t get the orthotics my podiatrist says I need, there’s no coverage for anything that might help the tinnitus that drives me mad on certain days and until recently my test strips were so minutely parsed that I could never feel the assurance of testing as I needed.

But I digress. I want to talk about the visit to my ophthamologist yesterday for my annual dilated eye exam. What I observed prompted me to wonder if we need to not just change how Health Care works in this country, but the name itself. Given the power of words, if we renamed “Health Care” to “Humanity Care” for instance would it help remind over burdened doctors who have been mandated to see a ridiculous number of patients within a scant ten to fifteen minutes each day that there are actually human beings inside these objects that get moved like on an assembly line from outer waiting office, to inner waiting office to their sanctuary?

I like my ophthalmologist: she’s bright, wholly competent, invites questions, has a personal and reassuring manner and I am extremely happy I have her in my life since I was made to believe 36 years ago when I got diabetes that I would end up going blind. So, I always feel celebratory leaving her office but I used to also feel comfortable going in, which changed yesterday; I felt a difference in the air, and then on the ground. It was obvious how many more patients needed to be seen, so that everything that was done exhibited that the priority had been given to time management and not to patient care. I observed patients were being treated like objects to be processed; to be moved from point A to point B and then out the door.

First, I noticed extra chairs had been placed in the hallway of the interior office so that every time someone passed, which happened almost every 30 seconds, you had to scrunch your body out of the way or get out of your chair to create more room that wasn’t there, difficult for elderly patients. Then the rush was present everywhere: twice I saw technicians call a patient as they passed by to follow them into an examining room. The first time the technician was gone in a blinding flash around the corner before the patient, well into her seventies, could inch along with her cane. By time she was half way down the hall she shuddered in a slight panic right before me because she’d lost sight of him. The second time it happened, a doctor issued a greeting to a patient, and then when he got to the end of the hallway where his office was turned around to usher her into his room only to see that she hadn’t moved from her seat. He called her again, and she replied in a chirpy, female-wanting-to-please voice, “Oh, I didn’t realize you wanted me to follow you!” laughter. Well why would she, he hadn’t asked her to, he’d just whizzed by.

My own treatment is what made me start notice all this. I was ushered into the first examining room by a technician after I’d sat in the waiting room for over an hour. When the technician closed the door she quickly apologized for the delay, but she didn’t apologize to me, she apologized to her computer since she was facing it and checking the screen for my details as she spoke. In fact, everything she said that was meant for me she said to her computer, her notebook or her equipment. Was I meant to feel sincerity in this communication?

Just the night before I’d seen a segment on the news show, 60 minutes, where a British adverturer in his 70s, who began a business to fly doctors, equipment and medicine to third world countries is now doing it almost exclusively in impoverished areas of America. His flying doctors, dentists, eye doctors, nurses take over a hall for a weekend in West Virginia, Kentucky, Washington and see about 800 patients over the weekend, sadly having to turn away hundreds for lack of time, personnel and equipment. A man was there who’d had an abcess tooth for more than two years which pained him every day. Young women were there who got a cancer diagnosis that day and the name of a nearby clinic. Yet the story that made me cry was of a petite, slim woman in her seventies, frail and cheerful who’d been one of the ones turned away and still she was cheerful until by a small tender act the journalist interviewing her ushered her to an eye doctor who made an extra few minutes to attend to her. She’s been wearing the same glasses for the last 16 years out of which she has not been able to see properly for years, yet she can’t afford to go to an eye doctor. She has no insurance because she can’t afford it after a lifetime of working. When she thought she’d be turned away she expressed that it was alright, she’d manage somehow, she had some friends and support in her church group, yet her face told another story of disappointment and our working poor. When asked if she asks her friends or church group to help her, she responded she didn’t want to be a burden, and the journalist reassured her there was no shame in asking for help, and she burst into tears. Watching this I began to cry for this frail, poor woman who’s worked her whole life and now can’t even afford an eye exam and a pair of glasses–here, in one of the wealthiest nations in the world.

If we started hearing on every news station what an awful state “Humanity Care” is in these days and reading about how poorly run our “Humanity Care”is instead of “Health Care,” maybe we’d at least be reminded that we’re actually talking about people, not cattle, not objects, not numbers. Can two words change how we think? Hmmm….”Humanity Care,” it’s beginning to grow on me.

A New Tool to Motivate Patients’ Self-Care

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Well, here’s one for the diabetes professionals, educators and nurse practitioners–although as a patient you may learn something too. July 26th at the Marriott East Side Hotel in mid-town Manhattan I attended Dr. William Polonsky’s seminar, “Understanding Behavioral Change to Help Improve Diabetes Outcomes,” which he delivered to more than 120 diabetes professionals. You can look here forfuture programs

Dr. Polonsky is a noted figure in diabetes, in fact I started this blog talking about him. He’s a psychologist, diabetes educator, Associate Clinical Professor of Psychiatry at the University of California, President and Founder of the Behavioral Diabetes Institute (BDI) in San Diego, the only institute looking at the emotional side of managing diabetes. He’s also the author of several coping with diabetes books. The program he’s created helps practitioners identify and address their patients’ psychological hindrances to self-management. He identifies 7 “Tipping Points” — tipping points being those hindrances that get in patients’ way–and helps educators coach patient’s through them tipping them toward better self-care. Invariably, if you work with patients you will recognize these among your patient population. If you’re a patient, you may just notice one of these emotional blocks applies to you:

1. Depression, which can be tipped toward a positive, engaged outlook on life

2. It’s no big deal, which can be tipped toward recognition of personal risk

3. Inevitability of complications which can be tipped toward hope

4. Treatment skepticim which can be tipped toward a realization that treatment can work

5. Unrealistic action plans which can be tipped toward clarity of action

6. Poor social support which can be tipped toward optimal social support

7. Environmental pressures which can be tipped toward new, effective ways of coping with stresses

The “tipping” is done by helping patients address their underlying emotional or psychological block or wrong-thinking and through inquiry and coaching getting to the root of the block and helping patients see a more positive outcome, this helps them get more invested in managing their diabetes.

Polonsky went for a laugh first by asking his audience, “How many of you have run into a patient in the last month that wasn’t taking perfect care of himself?”  He to the expected response as laughter spread across the room. He then told us that no patient is unmotivated to live a long and healthy life although sometimes it appears that way; the problem is that taking care of diabetes often doesn’t seem very rewarding. Imagine an educator saying to a patient, “You know Mrs. Smith if you take this medication I’m prescribing, see a battery of doctors regularly, get an A1C test every three months, watch what you eat and exercise every day, check your blood sugar all the time and do this 24 hours a day the rest of your life, here’s what’s in it for you — Nothing! If you’re lucky nothing is likely to happen.” It takes a lot of motivation for the average patient to perform the over 150 (they were counted by diabetes educators) self-care tasks day after day after day just to maybe not have something bad happen, maybe.

Polonsky’s course, sponsored by Roche, gives healthcare providers resources, training and support to help them identify and evaluate their patient’s tipping points and address them to create partnered, meaningful treatment plans. If you’re an interested healthcare provider, you’ll find more information here and on the BDI web site. If you’re a patient take a look at his brochure on the BDI site: The emotional side of diabetes: 10 Things You Need to Know. It’s a reassuring read, especially if you notice you may have a tipping point of your own

10 ways to know you have diabetes

Unknown10 Jobs that rock, the year’s 10 best movies, 10 lords a’ leaping: 10’s an excellent list number.

Nope, I’m not going to give you the typical symptoms like thirst, peeing a lot and fatigue. I’m going to give you 10 ways you know you have diabetes–my 10 things I find myself needing to consider because I have diabetes.

My list emerged after I saw a TV segment about how America is in love with lists.

Magazines and books are chock-a-block with them, “10 ways to conquer your phobias,” “The 7 best cities to live in,” “153 things to tell your lover in bed and out,” etc.

The reason lists are so popular is that they make magazines and books fly off the shelves appealing to our “quick-fix” in simple-steps mentality.

I will admit after seeing that report on TV, well actually during that report, I battered my brain to come up with a catchy list title for the diabetes myths book I’m working on, but alas I am still title-less. Nevertheless it did prompt my list of 10 ways I know I have diabetes.

1. I find myself screaming, “How many carbs are in that pancake? You don’t know?!” My day is filled with stuff ordinary people never think about.

2. Shit, shit, shit! (and really I don’t usually curse) I wasn’t going to walk this morning because they predicted rain and now the sun is blazing! Should I? Shouldn’t I? Do I risk going low, do I have to eat when I don’t want to? Shit, shit, shit! How many other people beat themselves up for wanting to take a walk?

3. I am afflicted with a major form of terrorist torture–sleep deprivation. “I’m so tired, can’t I just lie here and fall asleep?” Nope, gotta get up, go into the kitchen and stick a needle in my finger to test my blood sugar. Sunday morning replay: “I’m so sleepy, can’t I just lie here just a little longer. It’s only 7:30 for goodness sake.” Nope, gotta get up and stick 3 needles in myself!

4. “Hmmm… that’s a cute designer diabetes accessory, it would carry all my syringes, vials, test strips.” God, did I really say that? Do I really have to consider that? I want out of this club, never mind the cute accessories.

5. Wiping blood off my counter, my cupboard, my shirt, yuck my food, with absolutely no abhorrence, hesitation or dismay.

6. “When’s dinner? When? You sure? Really? You’re sure now?”

7.  Glucerna just made a cereal for diabetics — a product just for us, hmmm…I noticed there an “us.” I don’t really want to have to notice there’s an “us.” Yet now we’re worthy of marketer’s attention, right up there with aspirational Lexus drivers, Tide-detergent soccer moms, Sex and the City Garnier hair-coloring singles, and boy, “those special people with diabetes.”

8. How often do I really have to go to my endo? I just found a prescription to get blood tests taken July 30, 2007, oops.

9. Sneaking lunch into a noon movie, no sweat, but how will I be able to see my syringe to dose in the dark?

10. Geez, I just tested my blood sugar and I just forgot the number! Alzheimers? Dementia? Who cares, now I have to do it again!!! Geez 😦

In the back of my head, always, is a constant calculator of all the things I’m tabbing, analyzing and noticing just to take care of my diabetes, it feels like a second job. It’s actually a marvel and a huge disappointment that no one else seems to notice all the noticing I have to do. Except, unfortunately, you.

You can be awakened from sleep with a kiss – or a trophy

imagesMy ‘Inspired by Diabetes Competition’ wake-up trophy

I’ve been going along these last several months nose to the grindstone working on my book, when last week a package appeared for me from the arms of my FedEx guy. I couldn’t recall ordering anything and I didn’t recognize the shipper. The box was one of those delightful boxes, not colorful or funny-shaped in any way, actually quite the opposite — a perfectly medium sized, square, brown paper-wrapped box that could contain almost anything.

I opened the box and there my eyes fell on a letter telling me I was a first place winner in the Inspired by Diabetes Creative Expression Competition sponsored by Eli Lilly and the International Diabetes Federation (IDF). I had entered last year and had pretty much forgotten about it. My winning submission is a photographic treatmentand a narrative about how living proudly with diabetes helps my management and brings greater joy to my life. My executive husband said, “Where’s the judge’s report?” “Huh?” I said. “We want to know why they picked your submission.”  Seemed pretty clear to me, they liked it. However to satisfy his curiosity I called and asked if there was a judge’s report. “Huh?” the girl said who answered the phone at the Inspired by Diabetes office. After I explained she gave me the judging criteria: relevance to diabetes, creativity, narrative and emotionally impactful. Yup, just like I thought, they liked it but at least that satisfied the executive.

The competition received 800 entries from around the world capturing the challenges and triumphs of living with diabetes in either photographic form, essays, poetry, drawings, paintings or music. There are four Grand Prize winners and 1st, 2nd and 3rd place winners. As a first place winner a donation of $500 is being made in my name to provide scholarships for children from low-income families to attend diabetes camps and in IDF’s Life for a Child Program which provides life-saving supplies to more than 1,000 children with diabetes in 17 developing nations. Winners of the U.S. competition are now being entered in the global competition, winners of which will be announced in the fall. This is an annual competition so if you are just hearing about it and want to enter next year, check out the Inspired by Diabetes web site.

But back to the box. The box that my letter of congratulations came in contained a second box submerged under a hundred puffy pink Styrofoam chips. I didn’t open that box however for two days, not until my husband returned from business in Holland. I thought it nice we open it together so he could share the moment as he is my biggest fan and supporter. The evening he came home we opened the box and pulled out this trophy you see. We looked at the trophy and then looked at each other wondering what it was. I can’t remember what he guessed and I thought maybe it’s a double helix DNA pattern indicating stem cell research. But we really don’t know. All we know is we’re pleased as punch to be honored, contribute to such a worthy cause, and it woke me out of my deep and long slumber.

Sometimes it’s easy to forget when you work at home alone most of the time that what you do does have an impact on others. That is until a mysterious box arrives and a letter saying local media may knock on your door to hear more about your life with diabetes.

So, trust me, sometimes you can be awakened from a sleep by a kiss, as in fairy tales, and sometimes by a trophy. I’m just happy to be reminded now and then as I sit in my quiet living room typing away that I do make some kind of difference from time to time. Now you would really make a difference to me if you could tell me what this trophy represents, any guesses?

More micro-managing musings

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I’ve been further reflecting on this micro-managing mania of mine these past few weeks (see post below) and realize what an awesomely complex thing it is we do every day managing our blood sugar — and what an amazing thing it is we assume we should be able to do what our pancreas does automatically by taking pills or injections of insulin, watching what we eat and trying to use exercise as a sugar burner.

If you’ve had diabetes a while, you know we can’t make any of these decisions with the clear confidence we’re always accurate. We don’t know what our body is doing at any given moment: secreting stress hormones like cortisol and adrenalin which raises blood sugar because we’re frightened or stressed —

I imagine many times my blood sugar skyrockets from 105 to 310 merely because I’m frozen behind this computer trying to come up with my next witty line.

Then there’s getting sick but you don’t know it yet, as in wow, where’d that cold come from upon sneezing. Again, your blood sugar’s rising unbenkownst to you.

There’s the female once a month hormonal surge which many women suffer: more insulin resistant a few days ahead of your period, more insulin sensitive a few days in. Yet with increasingly busy lives lots of women don’t make the connection each month.

How about teens going through puberty with a host of uncontrollable growth hormones?

How about seniors who’ve been told they have to change their whole lives or die early, with miserable suffering along the way?

Then there’s the food thing, the label says this packaged corn muffin has 12 grams of carbohydrates, so you shoot up “appropriately” and two hours later your blood sugar is over 300, well mine was! 12 grams? I don’t think so: a liberal use of the word carbohydrate on some regulator’s part?

Or how about the myriad of carb calculations in King’s Calorie handbook that says 1/2 cup of cole slaw has 18 grams of carb. So I shot up for it and 45 minutes later was peeling myself off the floor. And merely saying to myself, “Oh, well, another day.”

There are so many factors, external and internal, that affect our blood sugar that I marvel at our innocent hubris to think we can really regulate our blood sugar with accuracy, for a lifetime no less.

I’m a 36 year veteran and I think what people find hardest to understand is each day I have to do the calculating and testing all over again, and again, and again…

I hear you, this is the part where you say, “Get a continuous glucose monitor already!” But it’s kind of like how I feel about the pump; I don’t want an attachment on my body, beside CGMs aren’t perfected yet, you still have to test with your meter so what’s the point? And with 7 or so checks a day I pretty well know how I’m tracking, after the fact. 7 or so checks, that’s rolls off my fingers, and lips, as though it’s just everyday business.

There are no answers here, just wide-eyed musing that 14 milliion patients in the U.S. have been duped — acting like we can really control our blood sugar.

I mean really, it’s a whopping assumption with our current practices; seems we are both foolish and heroic at the same time.

Perhaps worse, doctors and diabetes nurses and educators are under the same delusion — that we can do this with any consistent accuracy and not fall into despair from time to time befitting the everyday acts we perform.

I think we all need a good, fresh dose of reality: Do your best, appreciate that we have some tools, recognize it’s still a barbaric and hopeful process — and hang on to that hope because as things speed along we may actually crack this nut, or make managing diabetes a more automatic, less patient-dependent, emotionally-laden, burdensome process.

For all my disgruntledness, I am excited to see what will be in the diabetes management toolbox five years from now, ten years from now.

Meanwhile, I’ve decided to cut myself some slack, no, lots of slack, not about the discipline I bring to my management, but my expectation of how often I shouldget it right, lather myself with forgiveness when I don’t, and recognize in this crazy process the courage, valor, strength and optimism I bring to it all — and should be congratulated for living this way each and every day.

I think you should congratulate yourself as well for the mere fact that you’ve chosen to take it on day after day after day.

The mystery of my micro-managing frenzy

don’t know what’s gotten into me lately but for the last several days I seem to be testing my blood sugar almost hourly, micro-managing with a never before gusto.

If I eat what I think merits a half unit of insulin I’ll test and shoot up, even if dinner is only an hour away.

My post-prandial checks have shrunk from two hours to one, I can’t get enough information about how everything impacts my blood sugar.

I’m almost obsessive; if I were a gambler, I’d have already blown a million on black jack, if I were a drug addict I’d be stuffing packets into carved out Statues of Liberty for export, if I were a sex addict I’d be too tired to think and if I had OCD, obsessive compulsive disorder, yes, if, I’d still be washing my hands and never have them free to write another blog.

What’s happening? I suspect I like knowing where I am and feeling I can keep my blood sugar within target range almost all the time.

I think it all began two weeks ago when I noticed my blood sugar rising dramatically in the morning if I hadn’t had any wine the night before.

I joke that I use wine as part of my blood sugar management for it lowers my blood sugar as any pure alcohol will, except of course the obvious carb-loaded culprits like beer, mixed drinks (by virtue of the mixer) and liquores.

Not only does a glass or two of wine with dinner inhibit my blood sugar from rising, it lowers my blood sugar (bs) overnight and sustains a lower blood glucose reading and rise the next morning that lasts from the time I awake around 7 AM to the time I might eat breakfast closer to 9 AM.

I have even worked out how to accommodate the overnight drop so I don’t wake at 3 AM with the shakes as my bs lowers; I make sure my glucose level is around 130 or 140 before retiring.

But, after giving up the vino for a week, just too busy and needing a clearer than usual head, I saw that the inhibition of my morning bs rise was also gone. My lovely blood sugar read of 75 upon waking was 130 an hour later and 180 two hours later without doing a bloody, single thing. So I began testing in mini increments of time to watch what was happening and began to divide my rapid acting breakfast dose in two, sometimes three injections.

Typically I now take one or one and a half units upon waking ( of my 3.5 unit breakfast dose) if I’m not going to be eating breakfast for an hour or so. This blunts my rise significantly and then I’ll take the other two-thirds of my dose shortly before my bowl of oatmeal.

I think in hindsight this bird’s eye view into what my sugar’s doing almost moment to moment has been mesmerizing and made me very aware of the benefits of micro management. So much so, I began blunting rises throughout the day with more small doses and I can’t seem to stop. Well, I guess until they lock me up. (So there’s no confusion I continue to take my long-acting Lantus upon waking as I always have.)

Yes, you pump people are going to tell me, “Get a pump!” and I do realize I am enacting what a friend once told me is “the poor man’s pump” only I’ve raised it to an art, must be the beggerman’s pump, not just multiple injections but multiple, multiple injections.

So, yes, I began to look adoringly at an ad I saw the other day for Animas pumps. They seem to have gotten behind One Touch’s mini meters that come in hot colors and added the same pink and green color pump to their signature line.

The pink is awfully appealing, so appealing I thought as I usually do, I’ll do it when it’s half the size….. Unfortunately the idea of 24/7 hook up to a machine still isn’t as appealing as its color.

So, I’m wondering now how long this micro-managing phase will last. Maybe it’s just a micro period in decades of diabetes doings. Surely it can’t last forever, there are meals to be cooked, a house to be cleaned, work to be done. Not to mention the multitude of little red injection dots showing up on my abdomen, thighs and rear.

Then again, if I notice I’m playing connect the dots with my injection pricks and come up with the face of our next President I’ll let you know.

A soldier in the trenches, me

Got a lot a livin’ to do

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As an A1c Champion, I am often asked to deliver educational/motivational programs to fellow people with diabetes.

Recently I gave a presentation in Buffalo, N.Y., where I was double-billed with a diabetes educator.  Her speech preceded mine, so I leaned back and listened. And what I heard was a solid forty-five minutes of A1cs, blood pressures, weight control, exercise, portion control, and carb-counting…in short, numbers, zones, and target ranges up the wazoo. Where is the humanity in this, I thought? Where is the patient in this? Where is the acknowledgement of the energy required to slog through each and every day? I saw my purpose–to talk about how we hold diabetes in our lives.

Taking the stage, I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications. The room quieted. I was, they saw, like them: a soldier in the trenches. I saw the landscape they saw; I tramp through the same dark forest; I look for cover when diabetes rains down upon me or drains me out.

“When you’re so busy testing every day,” I said, “reading labels, counting carbs, and calculating, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?” Heads nodded and people leaned forward, turning from silent witnesses into curious, involved participants. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their anguish and struggle.

My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but also on the other side of our experience, where unfortunately many healthcare providers sit. People are dying–literally–to hear their healthcare providers address the emotional issues of living with diabetes and while it’s not providers’ fault, if you don’t live with a chronic illness that greets you every morning unrelenting, on a fundamental level in the messy arena of some messy emotions, many physicians and even educators lack the training to empower us to deal with the psychosocial aspects. 

We, however, are in the business of chronic illness. We have life adjustments to make, and we have precious little help to make them. So here are my recommendations: Learn all you can. Appreciate what you hold dear. Pace your efforts and forgive your mistakes. Keep the vision of your ‘best life’ ever-present. And spend more time doing what you love. While we’re living with diabetes, let’s not short-change the “living” part.

Here is another thought: How about the idea that we are “more than,” rather than “less than”?  After all, we do this whole other job called “managing diabetes.” I think we should be living with our heads held high, showing others the invisible “superhero” cape we wear. Call me crazy, and I’m sure some of you will, but I see a gift in diabetes:  that of a longer, healthier life than I probably would have had without diabetes, if I manage it responsibly.

After the program, people crowded around to thank me, and they were smiling. How often do you imagine someone leaves a diabetes talk with a smile? That’s where I want this blog to take you–to a place where you connect to your heart and spirit, a place where you may see that diabetes can bring greater meaning and purpose into your life. And, yes, there’ll still be room for ranting on the tough days. 

Let’s all cancel diabetes today

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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 sadstatement that we’re canceling more information getting out there about diabetes. 

I read on Amy Tenderich’s blog, DiabetesMinethis 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. 

 

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

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.