I write this blog for several reasons. One, I love sharing my knowledge and helping others. Two, I want you to know that managing diabetes involves emotional resilience not just meds and counting carbs. Three, it keeps my mind checking in on how I regard and manage my diabetes.
Truth be told, my diabetes-life began poorly. My early years were spent in denial and ignorance. Then after developing a few minor complications, I found my way to the top of the learning curve and shifted my vision -- from seeing diabetes as a burden to creating a healthy life. And how I deal with my diabetes has given me that. Over the years I’ve maintained a thirty-pound weight loss, I eat sweets only as a treat, I've wiped refined carbohydrates out of my diet, I use smaller plates and so eat smaller portions, I'm always taking food home from restaurants (usually it's mine), I power-walk almost daily and watch my head for incoming negative thoughts. Today diabetes is just part of my routine, and I’m healthier for it. I believe we’re all capable of finding a gift in our diabetes, and for some, it will be better health. Frankly, though, you have to be ready to look for it.
Here's a Zen sort of exercise that may help you do better: notice your thoughts about diabetes. How do you feel about it? What do you do to manage it? What don’t you do? Do you resent it? Is it friend or foe? How do you manage it: peacefully or combatively? Do you keep diabetes a secret? Why? Checking in with yourself on these issues may help create some new thinking for yourself, and prompt new actions. How you hold diabetes in your life impacts your entire life.
I'm always curious why we think what we do, do what we do, expect what we do. I'm intrigued by how when individuals face the same issues, we each exhibit different behaviors. And now I'm fascinated by how diabetes shapes our lives: why can some of us deal while so many are so stuck?
Noticing your thoughts can help you see the life you’re constructing every day -- your whole life and the role diabetes plays in it. Often I hear my thoughts best when I'm out of the house, walking around the park. My mind seems more free to travel under the open sky. If you let yourself rummage about up there in your head and then capture your thoughts on paper, it's a great way to glean some new insights and work out frustrations. Both are powerful means for coping with diabetes.
If you've read a few entries here you may think I'm schizophrenic. I report about feeling pride and celebration living with diabetes in one entry and then exhaustion and disgust in another. But, you see, I believe living with diabetes is all these things: the good, the bad, the ugly and the proud. And, our emotions are a significant part of what we need to manage along with our blood sugars.
I hope you find these entries fulfilling in some way. Maybe they validate your own feelings, provide connection with others, expand your learning or peak or satisfy your curiosity. Mostly, I hope they spur you to think about your diabetes-life, and try something new if you need to. I know it helps me to write them. Here's where all those thoughts walking around the park go.You can take a stab at writing your thoughts here too to see them more clearly. You may find you notice something valuable in the process. If so, let me know. Sometimes it's good for me to test my own theories.
Bayer just started running a new TV campaign for their meter, the Contour. Funny, I rarely think of Bayer in relation to diabetes. I think aspirin, even though a few months ago I participated in a focus group for Bayer's Contour meter and learned they have a whole division devoted to diabetes care. Still, I think aspirin. But they’re beginning to change my mind. Maybe they're even beginning to change people's minds about diabetes with this new campaign, subtle as it is.
While in the focus group I remember reviewing four concepts for the Contour. Two were very positive, and one had a tagline something like, "Yeah, I have diabetes, and, I enjoy my life." That one must have made it because I heard something like that in their commercial. Remarkably, they're not talking about the work of diabetes, which actor Wilford Brimley talks about selling diabetes Medicare supplies. They don't have a combative diva like Patti LaBelle, declaring, “I control diabetes, it doesn’t control me!” And it’s not alarmist, as in the new public awareness campaign for A1cs. It’s just an upbeat lifestyle spot where ordinary people doing ordinary things say to camera, “Life with diabetes? It’s about going for it!” “Life with diabetes? Getting more just got easier.”
A little trite? Sure. A little simplistic? You bet, but I kinda like it. What I like is it’s not threatening, frightening or bullying. It says ‘I take diabetes on the chin, no biggie.’ While us type 1s know diabetes is no walk in the park, and most type 2s probably feel the same, this may actually help type 2s feel that diabetes is manageable and not the end of life as they knew it. The tone of the pitch, and its upbeat takeaway, actually makes me feel a little more upbeat.
A few weeks ago reading Jill Sklar’s book, The 5 Gifts of Illness, I thought, 'What if as people grow older, type 2 diabetes was just ‘the new normal?’ I mean, everyone’s getting it, so what if we didn’t look at it as an aberration, but it was expected, as in -- you get older, you get wrinkles, and you get diabetes. Truth is, many experts say if you live long enough most people will get diabetes. My 84 year old father has just been diagnosed. But, trust me, that's another story.
I mean would we look at diabetes differently if it was expected? If it was just "the new normal" at some point in our lives? Of course for type 1s it’s a little different, but still if everyone expected to get diabetes would that change how we view diabetes, and how we live with diabetes? Would people greet it more gracefully and with less alarm and overwhelm? Would people be more accepting of the lifestyle changes diabetes requires? Just as we expect to slow down as we age, maybe if we knew diabetes was a natural part of aging, we might also accept eating less and moving more as what we're supposed to do when it arrives: the very behaviors that will keep us healthier as we age. Of course, it's likely some people would deny their diabetes, fight it or fear it I suppose just as they do now. But others would accept it more easily, and still others would embrace it as the impetus to make the last few decades of their lives healthier and more rewarding. I have no answers, but it’s an interesting proposition don't you think? And, going a step further, if you embrace this notion, you might find you view your diabetes differently.
On a final note, I will tell you about my experience of Bayer's Contour meter. I was given one last week by a cde. After years of using One Touch meters, I may just prefer the Contour and it took me by surprise. It seems to require half the amount of blood the One Touch does and draw it up twice as fast. Hmmm... it'll be interesting to watch Bayer as they get into the ring with the big boys.
I just discovered that there’s a new national public awareness ad campaign sponsored by the American Diabetes Association, American Association of Diabetes Educators, Juvenile Diabetes Research Foundation and the National Council of La Raza (the nation’s largest Hispanic diabetes advocacy group). What’s historic is that all these groups are coming together for the first time. Seems a signal that the powers that be realize that diabetes is the awful epidemic that it is, and are willing to put aside their differences and work together – at least for now. You can catch the campaign here.
I caught wind of this this morning on the blog, DiabetesMine, which I check frequently. What I found equally interesting is the flood of comments Amy’s (blog writer) article pulled. A third of the respondents seemed to like that the new campaign creates greater awareness of the importance of the A1c value. A third were cynical and jumped on the fact that the commercials don’t explain A1cs in the context of diabetes care, and that this campaign is only to make pharmaceutical companies richer. The last third bemoaned the fact that even though they know A1cs are important, they can’t seem to motivate themselves to better control their blood sugar.
I don’t often leave a comment on Amy’s blog but I did today because I feel strongly whatever we can do to get people more aware of the importance of controlling their blood sugar is good provided the execution is well done. And I think this campaign, as an awareness campaign, is well done. You may want to go check out Amy's article, and the comments, but I can tell you here what I chimed in with in response to the nay-sayers:
“I’ve not much to add (to the litany of comments) except maybe this: If you're cynical, ask yourself why? Our experiences and beliefs color everything we do and say. You're coming from a point of view before you even see something. Can you suspend your point of view and see something first without an opinion?
For those having trouble putting your awareness that uncontrolled diabetes causes complications into action, take a small step. Change one action for a week, see if you don't feel better. One week, then a second week, but don't even entertain the thought of a second week till you get there. Change happens one step at a time, one day at a time. Five years from now you'll either be changed -- or not. Do nothing and you'll be the one on the stretcher, but don't let that scare you, use it as information.
If you think pharmas are only out for profit, you'll dismiss this campaign before you actually consider that people at pharmas may actually have two sides: wanting to make money and wanting to help people.
Sure, we can say there's not enough info in the ad, but it will come. Let's get patients into health care provider offices first. If you think there's not enough training for most health professionals about diabetes, I agree. If you think there's not enough attention paid to coping and emotional issues regarding diabetes, I agree, it's what I write about. But doing something constructive to change this, even if it's just raising your voice works best when your intent comes from a constructive, rather than destructive, place. Everything is energy and energy affects everything.
If you think this ad campaign should tell you everything in 30 seconds about why you need to know your A1c, likely this is the first in a succession of ads. People can only take away 1-3 messages at any one time. I know, I was in advertising. No point littering, it only creates confusion.
Let's get patients into doctor's offices, doctors better trained, up the awareness of how emotions affect chronic illness, and if you agree, choose to be a part of that effort doing something constructive rather than destructive. Anything. This effort really needs as many of us as possible.
Of course Big Dave, one of the many commentators, then commented on my comment. What fun! He said that I’m biased toward pharma companies because I give patient education seminars funded by Sanofi-Aventis and pharmas do not have our interests at heart. Of course, you just know, I had to respond. And so I said, “Big Dave, I wasn't talking to you particularly, but I will answer your concern. There are four A1c Champion programs: 2 branded, 2 unbranded. I only do the unbranded ones, meaning motivation and education, nothing to sell. And yes, people tell me all the time after I present that they learned something or something in them shifted, usually that they have to be responsible for their care, rather than leaving it up to their doctor. I don't mind cynicism, I only mind it when it closes minds. I didn't say pharmas have your best interest at heart, I just said don't discount it, along with their profit-making.
I have a feeling right now Big Dave is scripting a response to my response. I’ll leave you to check. Just proves, though, that "comment-ing" is a great way to get us all talking and thinking.
You may not have noticed but you can now leave comments on this blog: what you think about something written, an experience or insight you have to share, what you'd like to know more about, what gnaws at you etc. It is my hope that, together, we begin to build a community that talks to each other, for we are all each other's teachers. Feel free to air your views and share your experience so that we open this door on diabetes a little wider. When the air gets charged with many voices and greater understanding, we will all breathe easier.
If you read about my day in the city with Ms. A, "A day trip to Diabetes Land," I forgot to mention that I happened to admire a bracelet Ms. A wore. It's a really nice piece of jewelry and serves as a medic alert bracelet. If you read about my new T-shirt, in "Don't you love my T-shirt?", you'll know I'm starting a new wardrobe featuring messages of diabetes pride. It hasn't been intentional, but it's just seemed to have happened lately. Almost as though I've an alter-ego taking over my body.
But back to the bracelet. In all my years living with diabetes, thirty-five and a half to be exact, just between you and me, I have never worn a medic alert bracelet. While I'm no Fashionista, I don't like what they look like, and I don't like the reference I make in my head -- "damaged goods." Then, too, just to be clear, I've never (yet) had an incident where I needed one.
But Ms. A's bracelet was so nice that after returning home I went directly to the web site where she got it,TAH Handcrafted Jewelry. I clicked 'Bracelets' along the left sidebar and scrolled through. There are several designs to chose from. Mine, pictured here, is seventh from the bottom, #9-S.
I wanted something inscribed, but not one of the expressions I saw on the site, so I called handcrafter, Tim. I asked could he put two words on my bracelet? I wanted it to read, "diabetes" to the left of the center garnet, and "pride" to the right. Just enough to send a message to myself, and anyone who eyes my new bracelet, that not only am I not damaged goods, but I have reason to be proud: a lot of work, as you well know, goes into managing diabetes. It's something extra we do along with everything else we manage in our lives. Why shouldn't we be proud? And most people don't even know we're working this extra job.
Imagine if all of us who in some way feel "less than" turned it into feeling "more than"? Imagine turning this ugly, old image of diabetes on its head! After all, so much has changed in diabetes today: people are coming out of the closet for one, then there's dynamic new research, fast-acting insulins, cool pumps, diabetic mountain climbers, triathloners and Olympic swimmers -- why shouldn't we have a new image? I'm imagining that lately -- thus the new wardrobe enhancement. As for my new bracelet, it's slim, light and bright, and that's how I feel wearing it. Powerful stuff, me thinks.
You should know 10% of the purchase price of the jewelry on Tim's site is donated to the foundation of your choice. You get to choose among: Children with Diabetes, Juvenile Diabetes Research Foundation, Diabetes Research Institute and the American Diabetes Association.
Now, if I should ever be found in distress, I think my really nice bracelet will catch some young paramedic's eye and he'll see that I have diabetes. He'll also see I have attitude and extremely good taste in jewelry.
I've interviewed more than 100 people who have diabetes in the past two years. At first I found my subjects just by asking friends if they knew someone with diabetes. Before long, I discovered everyone knows someone with diabetes.
I also went to two support groups for the first time. At Divabetics, here in New York City, I met Phyllis. I liked her right away. As we went around the room giving our two minute introduction she said, "I got juvenile diabetes at 58, now go figure!" I loved her spunk and sense of humor.
Yet below the kidding, she was having a tough time. A few years with diabetes, she was confused, carb counting was hard and she was more than annoyed with the difficulty regulating her blood sugar. And Phyllis was working hard at putting all the pieces together: visits to her doctor and educator, reading web sites, talking to others. Sometimes the pieces don't interlock the way we expect. Case in point: several months ago three of us Diva-betics spent a weekend at Phyllis's country house. It was an unintended, non-stop, Diabetes 101 workshop. "What's your blood sugar?" "98," "You're kidding, we ate the same lunch how could I be 250!" "You're kidding, you only need 1/2 a unit for that bowl of cereal?" "Let's go take a walk, my sugar's 198 and I want to get it down." "No way, I think I'm going low. S__t, 45! Where's the candy?" It was like a version of that old TV show with Beatrice Arthur, Betty White and Rue McClanahan, only ours would be called, 'The Diabetic Girls.' Maybe that will be us in our golden years.
But then I think it's better to enjoy our golden years now, in a stream of golden days. So last week Phyllis and I gathered to celebrate my birthday and her fifth year anniversary living with diabetes. It was she who merrily made the suggestion. Today Phyllis not only talks intelligently about carb counting, Smylin, pumping, etc, she's one of the women-behind-the-man at Divabetics, and she's helping others newly diagnosed get their hands around managing diabetes. Next week she's accompanying a "newbie" to coach her through her doctor visit.
Living with diabetes is a process. You don't wake up one day and know it all. Gosh knows, I didn't. But you could wake up one morning and "get it." In other words, see there is a gift in having diabetes. The road to there though will come with much learning, trial and error, bumping into yourself, your mistakes, lucky accidents, big-headedness, empty-headedness, and all the teachers out there who have proceeded you. Then 1 year later, 5 years, 10 or 20 years later, you're the veteran helping someone else. You have shed your old skin, transformed into a newer you, and discovered part of the secret living with diabetes is making every day as golden as it can be.
Were we celebrating having diabetes? No. But we can all celebrate having the courage and humor to responsibly make diabetes part of our lives and enjoy the things, other than the tsouris (stress), that diabetes brings into our lives. Like a new friend with a really wicked tongue.
So that's the book I gave Phyllis, (photo) a compilation of personal stories from Diabetes Forecast magazine. Just some light reading for the bus. Meanwhile Phyllis gave me two hours of laughs, kinship and our birthday/anniversary lunch.