Patients teach each other


July 22nd I’ve been invited, among many other esteemed diabetes bloggers, to attend a Roche social media summit. Roche, a major pharmaceutical in diabetes care, is, as they say, “looking to see how bloggers and companies can work together to provide accessible content to the diabetes community.” They are obviously seeing that more and more patients are talking to, learning from and informing other patients. 

Our benefit as bloggers is to see if we can help patients even more by providing even more information (I happen to know Roche sponsors many valuable informational seminars), and of course, it’s also a nice opportunity for us, who mostly blog alone in our homes or offices to get out (albeit the conference is in Indiana, Roche headquarters) and meet each other. 

The fact that patients are looking more and more toward other patients for information, guidance, understanding and support is occurring at lightning speed for several reasons:

1. The internet has made this possible

2. Too many general physicians and health care providers are not very knowledgeable about diabetes

3. Even endocrinologists have less and less time to spend with patients

4. A chronic illness like diabetes requires ongoing learning and support 

5. A self-managed illness like diabetes requires the patient is made exceedingly knowledgeable to care for themselves, including both the medical acumen and ability to develop emotional resilience

6. A chronic illness like diabetes requires you get the knowledge when you’re ready. A friend, who has type 2 diabetes, told me the first year of her diagnosis when free classes were available to her, her head was spinning so much she barely took in the information. Now a year later when she’s ready, it will cost her $1,500 to repeat the classes.

Last month I gave my diabetes presentation to a group in Jersey, City, NJ. I spoke to about 30 patients with about as many pharmaceutical reps also in the room sitting behind their vendor tables filled with brochures and promotional items like pens and tape measures. I know there was also at least one endocrinologist in the room, who is an exceptionally caring physician, and a few diabetes educators and dietitians, also exceptionally concerned for their patients–otherwise they wouldn’t have created this learning opportunity for the community.

At the end of my program, all the medical people congratulated and thanked me. Also, almost every pharmaceutical rep came up to me and told me what a wonderful program it was and how much more they understood what dealing with this disease is like. 

Then, as I was leaving, one young man grabbed me by the arms and said, “Please, I have to ask you a question. I only want to talk to you. You get it, you really get it! Not like my doctor!” 

I listened to his question and gave him my opinion, which I let him know was my opinion. I also offer him the sage advice that if he wasn’t happy with his doctor he should look for another. He said he had an appointment next week with, in fact, the doctor in the room that night. Then he asked another question, and then another. And when finally he was spent, his eyes were tearing with little droplets of gratitude.

We have an edge over doctors. We live it, and there is an immediate, invisible bond. It will be interesting to see what Roche is thinking, and I do commend them for thinking, and wanting to and reaching out to learn from us. It will also be interesting to see what I learn. I certainly know patients learning from patients isn’t going away and the more we can all reach out to others the better. 

A soldier in the trenches, me

Got a lot a livin’ to do


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. 

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

Falling off my pedestal, ouch!


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

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

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

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

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

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

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

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

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

There is a champion within each of us

It’s been a busy week with Diabetes Day having fallen this past Wednesday. I’ve been involved in various activities around town, and like my fellow A1c Champions, been giving our motivational presentation to fellow diabetics. Yesterday, not far from my home, I spoke to a roomful of type 2 patients. The good news was almost everyone knew this is Diabetes Awareness Month. The bad news was very few knew what an A1c is. You’d be amazed to know just how few people with diabetes know how to manage it.

I was speaking at a medical center in Bedford Stuyvesant, a lower economic area of Brooklyn with signs of gentrification spiritedly popping up amidst the shuttered buildings and bodegas. Most of the patients who attended have had diabetes for several years and one patient was a newbie – diagnosed just two days ago, and he was reeling. While I know full well the initial response to a diagnosis of diabetes: shock, loss, grief, anger, shame, fear…he felt he’d lost his life. I acknowledged his feelings and then said, “You know, there’s another way to look at this. You didn’t just hear a doctor say you have terminal cancer. Diabetes is manageable once you know how. Now it’s your job to find out how and take the steps necessary.”

I wish I had also remembered to tell him, and all of them, about a news story I had seen some months ago on TV. It was about a one-legged black skier training for the Special Olympics. His story is remarkable, not only because he has become a masterful skiier, but because he came from the neighborhood where I was speaking yesterday. Years ago as a teen he was caught in a neighborhood shoot-out. A bullet cost him his leg, and three months of his life as he lay in a coma.

When he awoke, this active boy couldn’t participate in the usual pick up game of basketball, but one day he tried skiing and loved it. So with a dream and much determination, he moved away from his family, friends and home to Colorado to train for the Special Olympics.

Today he is part of the Special Olympics training program. He works as a sales rep at Home Depot and gets time to train. I was awed by this young man. Not just because he can stay erect on one leg whipping down a mountain, but because of his relentless positive spirit, optimism and good will. 

When not on the slope or in Home Depot’s paint department, he’s touring — influencing kids to stay in school and spreading his good cheer and message about what you can accomplish when you put your mind to it. 

I really wish I had remembered to tell my diabetes group this story. A man, from just where we were gathered, had turned his life around after tragedy struck. They would have seen how much is possible, how you can come through life on top — including living with diabetes — when you put your mind to it. And that goes double for my newbie who’s just starting to wrap his hands around diabetes. Right now he can choose to look at his diabetes as a terrible thing or a stimulus for getting healthier, and also help his family members who’ve all been “suffering” with diabetes for years. 

At the end of the TV segment the reporter asked the skiier how he stays so positive. He said, smiling, that when he was a kid his grandmother told him something he’ll never forget. She said, “No matter what, you’re already a champion because of who you are, and the influence you have on yourself and others.” I think we’d all do well to heed his grandma’s words. 

Know that there is a champion within you and that your champion will carry you as high as you aim to go. Then when you get up there, take a look back, reach out your hand and help pull someone up who’s struggling below you. 

Speaking at the ADA Health Expo, and what I learned


I spoke in front of 60 people twice in the last two weeks at the American Diabetes Association Health Expos — first at the Jacob Javitz Convention Center in New York City, and yesterday at the Convention Center in Tampa. I was a key-note speaker on the Main Stage of the Exhibition Halls sharing healthy tips and my personal tricks managing diabetes. It’s enormously rewarding for me to give these presentations: I love to help, to share my experience and, I guess, be on stage. What few people know, although at times I bring it into my talk about controlling blood sugar, is that my blood sugar often spikes just before I start from pre-stage jitters. Ah, the price of fame.

But that is not the nut of this story. Rather, yesterday at the Tampa Expo after my presentation, I sat in on a CDE’s workshop about ‘Everyday Dealings with Diabetes.’ During the break, I talked with another participant about “burn out.” She is a teacher whose days are so fragmented that she can’t seem to eat and do her exercise as well as she’d like. She also recently had gastric bypass surgery and lost a huge amount of weight. While she generally eats much healthier than she use to, and her need for medication has disappeared, she still has to carefully watch her weight, her diet and her activity, or the benefits could all go away, and her diabetes will return. “I’m constantly “fighting” my diabetes,” she said, exasperated.

My antennae went up immediately. If she’s “fighting” her diabetes, if that’s her attitude, focus and feeling, then she’s going to experience burn-out on a fairly regular basis. Doing battle is exhausting. Further, we typically see a fight as having a winner and a loser. From all she said, I imagined she casts herself as the loser. More tiring still.

“Can you change your attitude?” I asked. “Don’t think of fighting your diabetes. Think, instead of what diabetes has given you. It’s caused you to lose a lot of weight, eat better, start walking and now you have this trim, energetic body. You may not do your best all the time, but you’re doing much better than you ever did before.”

Her blue eyes flashed with surprise and understanding as she got it. She said, “Wow, you’re absolutely right! I’m so glad you said this. Thank you.”

So often we forget in all the work diabetes takes why we’re doing the work, or what we’ve gained by doing the work.

A few hours later while going through security at Tampa airport, I was still wearing my speaker’s badge from the Expo. If I’m honest, it was intentional: I was curious to see if anyone would approach me and start talking about diabetes. I thought maybe I could help someone, even outside the Exhibition Hall.

Well, who noticed my badge but the TSA security officer! As my suitcase made its way through the screening machine, the operator noticed something suspicious. So Bob, according to his name plate, politely asked if he could open my bag. As he did so he noticed my badge. Now, I thought, I’m dog meat! He’ll look for my syringes and this will start a whole episode. Bob said, “So, you were a speaker at the ADA Health Expo?” “Yes,” I said, not wanting to engage. “Hmm… “ he said, “Interesting.” “Why?” I queried, forgetting my disengagement strategy. “Well,” said Bob smiling, I have diabetes.” And so it began. As his white-gloved hand found the menacing granola bar in my case, Bob told me about his A1c, his diet, and how he’s still gotta lose a few pounds but he’s working on it.

We chatted for a good five minutes off the line, and I was smiling all the while thinking here I was helping the TSA security officer! Who woulda thought? I also realized, as I walked to my gate, with Bob wishing me a safe flight, that when you stay alert and open and in a space of gratitude, you can help anyone, anytime, anywhere — particularly if you wear a sign saying, ‘Diabetes Speaker!’