Living with diabetes

Slices of diabetes-life in 4 short stories

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Through my friend who lives here in Sydney I had two contacts to make while here. One was with the General Manager (GM) of Diabetes Australia, no slouch there, although he was working in his wife’s candle shop when we met and absent shoes. Well, we are in Sydney mate. Diabetes Australia is the equivalent of the American Diabetes Association. Turns out after a nice chat he suggested I send him my new book when published this July, The 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It, and he’ll get it to his media person to possibly distribute in Oz (that’s  Aussie-speak for Australia.)

The other meeting was with two mums of children with type 1. One is the mother of a five year old boy who had to be yanked out of public school because the principal didn’t want to deal with his diabetes and supply a nurse. Now the family are paying private school fees and she told me the law is very grey here as to what services a child is entitled to in regards to a school nurse. Actually the GM of Diabetes Australia said he’d be happy to advocate for her as last year Diabetes Australia took a case to court and won getting a type 1 ambulance driver’s job back. 

The other woman I met is the mother of an eight year old girl diagnosed almost a year ago. Since, she has become very involved in JDRF (Juvenile Diabetes Research Foundation) here and inspired many others. It is interesting to sit a world away and share the same stories and feelings. And I knew beside sharing my knowledge and experience that just having these two women see someone who’s in as good shape as I am after living with type 1 37 years that they would gain something invaluable. The eight year old’s mum sent me this response after our breakfast by the beach:

Hi Riva, 
 
It was lovely to meet you and I take loads of comfort in meeting folk like you who play to win with diabetes. Sometimes I may sound too blasé about diabetes; it is a tough 24/7 disease but I refuse to let it take me and Emily (her daughter) down so I hang on to every positive role model that I can and I know that one day she too will be sitting with someone else over breakfast and be sharing her positive story on diabetes; so a huge thank you. 

Later that day I also met Emily’s dad who is an accountant by trade and has been working nose-to-the-grindstone on an algorithm whereby people who use a pump can better optimize how much to dose and how often to test their blood sugar. My husband came to this meeting as well and being a “systems” guy shared that when dealing with diabetes there are many complex systems to take into account in addition to meds, like food, exercise, stress and emotional resilience. 

Emily’s dad nodded his head, and perhaps gripped his graphs and charts a little tighter. I suspected that they were what was helping him feel he can have perfect control over something he can’t, diabetes, and feel he can protect his child. 

One day I’m pretty sure Emily will be the one to let her dad know that life is O.K and that she is O.K. even living with diabetes, and maybe even recognize that in some way she is “all the more” for what she goes through managing this disease.

Diabetes gets tiring on the road

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It had to happen. Three weeks on the road, or more apt, in the mountains of Queenstown, New Zealand and the harbor of Sydney, my lack of being able to control my blood sugar as well as I’d like is driving me mad. Translation: being out of my routine, not taking my daily hour walk due to San Francisco-like hills, and finding constant surprises at lunch like a chicken and avocado sandwich that comes on doubly thick slabs of sourdough bread with mayo or a  thimble-full of quiche that comes in a carb-laden pastry shell is wearing me down. 

Then foolish me, I underpacked my Lantus SoloStar insulin pen needles. I had several sample packs of “click-on” needles and misread the 8 mm size as 8 needles in a pack. Unfortunately I have discovered there are only 3 needles in  a pack. So now I have five more needles to get me through 20 more days on the road. Now, tis true, I don’t change the needle every single day, but every two to three days and this won’t get me through. Luckily, I have experimented and I if I stick a syringe in the rubber stopper of the SoloStar as far as it will go, I can withdraw the Lantus as if from a vial.

I just said to my husband, “I’d like to be home now for one day.” He looked at me as though I were mad, here in the midst of white sandy beaches and honeysuckle. But I’d like to watch the morning news, sit at my computer, poke my nose into my neighborhood shops, and with that put on my sneakers for my walk around the park and reach into my refrigerator and cupboard for my usual foods. I don’t really think I’m yearning for snow and frigid temperatures but the comfort that my routine gives me managing my blood sugar. While my crankiness will lift, right now as the Brits would say, diabetes is just “a little up my arse” after 17 days on the road. 

Grappling with food on the road and a sunny Christmas in Sydney

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opera house

I can’t complain about a vacation that’s taking me from Queenstown, New Zealand, to Sydney, where we are now, to Singapore, Tokyo and San Francisco before I arrive home. Yet one thing that’s tough, beside the jet lag and time zone changes and more frequent blood sugar testing, is eating almost all your meals at restaurants where you can’t control your food, let alone half the time knowing what it is–well that will come in Singapore. 

Then real life comes flying in to the idyllic lull. Just today a friend back home sent me this article from theNew York Times about how low GI foods (non-starchy, non-sweet foods that raise blood sugar less and more slowly) are better for diabetics than the highly touted whole grain diet. In other words, your blood sugar will rise less and more gradually if you trade in your whole grain bread for nuts, beans and certain high-fiber crackers. 

I’ve known this for quite some time having tested my blood sugar about a zillion times to see my reaction to different foods. So, for me, every day (when I’m not traveling around the world) begins with slow-cooking steel cut oatmeal, to which I add ground flax seeds, cinnamon, low fat yogurt and peanut butter. If I eat bread or ordinary cereal my blood sugar goes off the charts. 

Luckily here in Sydney we’re staying with friends so I’ve stocked the larder with my healthy foods and gotten the expected grimace when I offer to share my yogurt and peanut butter combo. I still don’t know why Danon hasn’t produced such a flavor but no one seems to share my enthusiasm for it. So yesterday my day began with my usual oatmeal and then I had a salad with toasted almonds some raw broccoli, a few slices of ham and a spoonful of hummous for lunch and most nights here it’s fish and greens, since my friends are healthy eaters too, and there’s nothing Bruce can’t sear on the Barbie and make delicious. Of course, Singapore and Tokyo will prove to be problematic again because most dishes are rice-based. And so I will need to stick to grilled meats, miso soup and sashimi. God knows when I first lived in Tokyo 20 years ago the rice was always my menace.

But, back to Sydney. Soon we’re off to the ferry for a 15 minute ride over to the city to buy some Christmas gifts. Still having a little trouble reconciling Christmas carols with bright sunshine and 80 F temps. Guess I’ll just have to force myself to get used to it. 

 

The diabetes connection in down under Queenstown

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Two stories to wrap up New Zealand as our stay here has ended and we’re on to Sydney.

1. The wool story: After days of walking in and out of shops that sell fine Merino wool, a native staple, I was in yet another shop eyeing these beautiful sweaters, gloves and hats with envy for, alas, I am allergic to one thing in the world– wool. Yet, I could not help admiring these products’ beauty. And so I said, plaintively, to the saleswoman, “It’s funny, I feel like a diabetic in a candy store, I am surrounded by these beautiful wool products and I am allergic to wool.” She looked at me curiously and said, “Really, diabetics are allergic to wool?” Of course that was not at all how I meant it. When I recounted this story to the husband, we laughed and agreed I now had a new myth for the sequel to my soon-to-be-published 50 Diabetes Myths book, “Diabetics can’t wear wool.” 

2. The unexpected encounter: Midway during our stay in Queenstown we switched from a business hotel to a Bed and Breakfast. Over breakfast our first day I heard an American accent. Steve from Rochester, Minnesota was sharing how his rental cell phone went off at 5 A. M. that morning and it was a wrong number! That’s all the ice breaker I needed to begin the usual, “Where are you from?” “How long will you be in NZ?” As the conversation wound down from sightseeing, politics and the global economic meltdown, I mention that I just finished writing a book on diabetes myths. Steve’s wife’s face, Julie, lights up. She tells us that she has type 2 diabetes. Well, that is not all that surprising for a middle aged, slightly overweight American woman, but what is surprising, and stirs an engaging conversation, is that she is working with the famed Mayo Clinic as part of a research focus group on behavioral methods for helping patients manage their diabetes. 

She begins to talk about what I have learned through the more than 100 patients I’ve interviewed: you need to understand the context of patients’ lives to help them change behavior. She recants a wonderful story of one elderly patient who tells his doctor that he wants to be put on Byetta. His doctor who would never have thought this man would chose an injectible drug (and so wouldn’t have offered it), asks his patient why he wants Byetta. His patient tells him he is soon going into an assisted living home and he wants to lose a few pounds because he hears there are a lot of available women there! [Byetta helps most patients lose weight as well as control their blood sugar.] We laughed, and we understood what few doctors do: all our choices are embedded in the context of our lives.

Julie shares about herself that after being in denial for some time after her diagnosis, she took some diabetes classes and lost weight and significantly lowered her A1c. My husband asks what her A1c is and she lights up again and tells us, “5.7!” The husband says, “You must be very proud” whereupon Julie says with both elation and sadness, “Yes, I am and I want to tell people but who would understand?!” My belief that you can experience pride because of how you live with diabetes and it can motivate you to continue to do well is confirmed, and the husband whisks upstairs and returns with two of my books, The ABCs of Loving Yourself with Diabetes, in hand for Julie. We witness a smile quickly spread across her face as she skims through the book and she volunteers that as soon as she’s home one of these books will be at the Mayo clinic. It is like an angel named Julie has sat at my breakfast table in Queenstown.

I keep saying (to anyone who will listen) the universe is continually supporting my work by throwing gems at my feet, but that morning it was Steve who said, “This is so amazing. We weren’t intending to stay here but our travel agent “stuck” us here for three days, and look what’s happened.” 

I agree Steve. And so we fly out of Queenstown taking with us the beautiful scenery, rich new memories and new bonds that were woven that morning.

 

Diabetes news from New Zealand

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Well, here I am in Lord of the Ringscountry — Queenstown, New Zealand to be exact, where much of the scenic movie was shot. Exceedingly nice to be here if you don’t count the 24 hours in the air and five hours on the ground it took to arrive. This is a working vacation: time to play, sightsee, visit friends as the husband and I go from here to Sydney, Singapore, Tokyo and San Francisco, and I’ll be meeting up with some folks at JDRF and Diabetes Australia and possibly do a presentation at a hospital in Singapore.

The first picture posted here is from the wharf on our first rainy day. The second, exhibits something that took me by complete surprise on my Qantas flight from Los Angeles to Auckland, NZ. A compartment in the bathroom where you can dispose of your needles. I have never seen this before, and I’ve been around, on airplanes, I mean. 

I was intrigued–is it for diabetics? Anyone with a medical condition? Drug addicts?  I asked the stewardess while deplaning. She looked at me quizzically, her facial features almost saying, “What accusation are you making asking what our disposable needle bin is for?” Was it my New York accent? As I read her face, I geared up to offer just how much I enjoyed seeing the bin because I have diabetes, but before I uttered a word, she said, “diabetes,” and then I told her I have it. She warmed immediately. I told her I’d never seen such a bin on any other airline whereupon she told me it’s standard on all Qantas flights, imagine that! What also happened seeing this bin was an internal shift: I felt free, as though I just stopped holding my breath, not even knowing I had been holding it for the past thirty years. I felt acknowledged and accepted, as if I’d just been picked for the volleyball team and everyone was cheering. I could come out of the closet now, at least  out of this bathroom, without fear of judgment; it was an immediate, rich, sensory feeling.

I have another tidbit to offer re: flying and adjusting your insulin to cover time zone changes, which I am really typically horrible at.  I read about this tactic before leaving home and it worked in this instance.  Since once I landed in Auckland it would be four hours past my usual once daily morning Lantus injection, which I take around 7:30 AM in NYC, I took 1/4 of the amount I normally do when it hit 7:30 AM NYC time (my watch still being on NYC time during the flight.) Once we landed in Auckland it coincidentally was early morning and then I took my full amount of Lantus getting right on local time for my injections. It worked like a charm! But that’s all I can offer because I always struggle with how to dose for different time zones. My usual methodology is just test every few hours and catch up with correction doses until I’m about into the third day of travel.

As I sign off this morning surrounded outside my hotel window by majestic peaks, luckily today the sun is shining over them–I am in the same room number as my street address. The husband thought this was remarkable ingenuity on the part of the hotel, to match guests to rooms that replicate their address. I, of course, thought that would be nearly impossible. When we asked at reception, the concierge told us it was a very inventive idea but no it was not something they do. So, since it’s kismet, I’m taking it as a very good sign for the rest of our travels which I will post as we proceed.

Diabetes + My Response = My Life

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If you’ve rambled around this site a bit and read some of my posts you know my work aims to help you look for whatever good you can in having diabetes, since after all, you have it. And let the bad roll over you as best you can. And, to push the envelope so far that you create an exceptional life, not despite having diabetes, but because of it.

Granted, that’s easier said than done, and you have to be in the right place in your life and your head, and there will be days you’ll feel, “yea, I got it, whoo hoo, and days you’ll think, “I can’t bear another moment of this, another fxxckin’ high blood sugar, another low, another muffin calculation….! Well, you get the point. Still, I believe, looking for the good in life is a more worthwhile way to live.

So it struck me while reading Amy Tenderich’s blog, DiabetesMine, last week, that while Amy focuses as an experienced journalist on sharing what’s going on in diabetes research, technology and pharmaceuticals, and I know she has a whip-smart cynical sense of humor, that at the end of one of her posts she wrote, “Living well and being happy with diabetes is a delicate construct that is tested every day with fluctuating BGs, imposing tasks, and endless responsibility…  Better to appreciate the life I’m living than pine for the one I can’t have.” 

I can hardly put it better myself. Each one of us confronts the challenge of diabetes on a daily basis and how you respond to it, as how you respond to anything in life, is what creates the quality of your life. If you’re doing really well with this, or really poorly, I’d love to hear from you.

Open the door on diabetes and smell the fresh air

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Loading my syringe and surprising my friend

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Surprise transforms into curiosity, admiration, knowlege and understanding

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 While in Burlington Airport a few weeks ago I saw a man feeding himself through a tube he was holding in mid air connected to his chest…and you’re embarrassed to take a shot or test your blood sugar in public? Get over yourself!

Scroll back: Last month I delivered three diabetes presentations, the last one in Randolph, Vermont, a sleepy little hamlet 60 miles from Burlington where more than 70 people came for the hospital’s Diabetes Day. I was the key-note speaker.

I love addressing patients no matter where in the country–one minute I am a stranger and one hour later I am a “best friend” and “confidant” for  their diabetes-life issues. I relish the momentary bond and treasure the invested trust.

But this is only in part a story about “we” diabetics. Leaving Burlington, I was socked into the airport for a three and a half hour delay due to fog and planes backed up at LaGuardia airport. I read a little, paced a little and finally on my way to board, I passed a gentleman, about 40 years old, who with his flannel shirt fully unbuttoned and his chest fully exposed, was feeding himself through a six inch tube entering his chest and curving upward in mid air. The tube had a funnel like opening into which he was pouring a liquid.

I had two reactions. The first was, wow, look at that, I’ve never seen that before. The second was, wow, he has no embarrassment about doing this and exposing himself in this way. He is not leaning over a toilet in a dimly lit bathroom stall, he is completely out in the open managing a necessary part of his condition.

This made me think about all the people who hide their diabetes care. Do you take an injection covertly or skulk off to the restroom to do it where you can barely see? Do you not test your blood sugar while out because you’re embarrassed if someone sees you? Do you harbor feelings of shame, guilt, or worry for other’s comfort based on your behaviors managing your diabetes?

No one was gathered around this man, no one stopped to gawk and there were no huddled groups whispering about what he was doing. I dare say most people didn’t even notice. It may be hard to admit, but the truth about most of us is we’re so absorbed with ourselves that we don’t notice much what others are doing unless our attention is called there. 

One reason to come out of the dark managing your diabetes is you’ll do the things you should be doing more often and more frequently, like taking your meds and testing more, which will give you better control. Also, the burden you shoulder may not feel quite so heavy when it hits the light. The second reason is to educate the general public so diabetes gets the funding it needs and you get the respect you deserve. How’s anyone going to understand that diabetes is not a “piece of cake,” yes pun fully intended, or just a matter of avoiding sweets unless they see what we deal with? 

If you didn’t contribute last month during “Diabetes Month” to making someone more aware of diabetes, take your management out of the closet and into the restaurant, library, airport and school so others can understand what diabetes truly is and what your life is like managing it. Please note, I don’t mean you should be an exhibitionist or not respect the environment you’re in. I don’t hesitate to do what I need to do in front of friends, but I’m more discreet for instance in a business setting where such behavior is not the norm.

The long and short of it is if anyone notices what you’re doing at all, I’ll just bet they’re more likely to be surprised, sympathetic and supportive, as my dining companion Paul was above, than judgmental and irritated, and with that we all win. 

 

 

 

Blood & Honey sheds new light on diabetes

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I was impressed when I tripped over Jessica Bernstein in an article in DiabetesHealth magazine last month titled, “Blood & Honey: A Documentary.” 

Bernstein is a psychologist making a documentary film that deals with the psychological component of living with diabetes. As a type 1 diabetic herself, she says,  “I wanted to understand how living with the condition for so many years influenced people’s identity development.”

Like me, Bernstein has seen that diabetes researchers are focused almost exclusively on the negative aspects of diabetes. Few talk about how people can develop in positive ways as a result of dealing with diabetes. Bernstein began turning this realization and curiosity about how diabetes can have a positive, developmental affect into a film.

Her film, Blood & Honey is still partially in development and looking forextra funding. At present, the film features interviews with several people who live with chronic illness and explores what we can learn from them. There’s an African medicine man who shares that peple who live with chronic illness for many years in his culture are considered “elders,” the wise ones that communities draw upon in times of crisis. An interesting and far different slant than how seniors who live with diabetes here are regarded and hold it themselves. Here the primary sentiments attached seem to be:  blame, guilt and victimhood rather than wisdom and reverence.

Philosopher, Susan Wendell, who’s lived with chronic fatigue syndrome for 20 years also featured in the film believes people who spend years living with chronic illness learning how to deal with pain and suffering become valuable resources for others. “We don’t talk as much about the experience of illness as we talk about how to get over it, how to stop it, how to prevent it, how to relieve it, how you can be healthy if you really try,” says Wendell. “I think there’s an enormous body of knowledge among people who are suffering that is untapped and if we tapped into it we’d be less afraid and know better how to cope when something happens to us,” she finishes.

As producer Bernstein says,”Coming to see myself as someone with wisdom to share was a revelation.” When Bernstein tells someone she’s lived with diabetes for 36 years, as have I incidentally, they remark, “Oh, I’m so sorry.” Nobody she says has thought to pick her brain and learn what she’s learned about central issues of diabetes and life, like uncertainty, loss, change and mortality. 

Imagine just for a moment how it might change how you feel about yourself and living with diabetes if you regarded yourself as a wise one where every day your strength, courage, humility and dreams are tested, and you learn from such experiences. Would you see yourself differently, your capability and value?

Bernstein’s film has gotten off to an exciting start and is seeking funds. Learn more about the film by checking out her web site, and you can make a tax deductible donation through www.bloodandhoney.org.

My hat’s off to the diabetes sales reps I meet

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This post comes late in the day on what is today World Diabetes Day, the one day during the year the whole world tries to raise awareness about diabetes. I have just returned from giving an educational diabetes presentation in Burlington VT. 

I often think I gain more than I give–I receive the heartfelt appreciation of patients whom I speak to and equal appreciation from the true soldiers in the field, the diabetes educators and  nurse practitioners. Perhaps it will surprise you to know I also receive great appreciation from the pharmaceutical sales reps of Sanofi-Aventis, the sponsor of the A1C Champions program I deliver and the manufacturer of Lantus and Apidra insulins. 

It is one of the reps job’s to sell the program to their accounts, the doctors, nurses and educators they service, and it is a win/win. Patients learn how to better care for their diabetes, get inspired and motivated by hearing about it from a fellow patient who knows the experience of living with diabetes, and when they begin to take better care of themselves it can involve using insulin, which benefits Sanofi-Aventis.  But all the reps I have met are incredibly caring people who want to help patients.

So, it seems appropriate this day to share with you an email sent to the organization I do this program through from a Sanofi-Aventis rep about the program I delivered Tuesday in Jersey City, NJ. 

Dear Management Team,

…Today we had an A1C Champion presentation by Riva Greenberg a Type 1 diabetic patient. Riva talked to more than 30 patients and shared with them how easy it is for her to manage her diabetes despite the fact that she takes multiple shots a day, more than 7 (including testing) and yet she has a very fulfilling live. 

We witnessed the increased interest in patients from the last time we supported a similar event by the overwhelming number of patients at today’s presentation, as well as the amount of patients who had one-on-one questions for Riva after her presentation. 

It was very inspiring to me to hear some of the comments she made to encourage patients to take better control of their illness. She also shared with me that ATTITUDE is so important when a patient is diagnosed with diabetes. She added that it becomes a whole different issue when a patient realizes that it is only in “their hands” whether they’ll be present in their children’s future or avoid complications. She said that the change in attitude can come from a simple way of seeing things, switching from a “have to do it” to a “choose to do it” mind frame about their diabetes tasks.  Thanks Riva for all the changes you inspired TODAY!!

Best regards,

Priscila Alvarez, Sanofi-aventis

So today I speak for those much maligned pharma reps whom most people think are only in it for the money. Most I have met are in it because someone close to them had diabetes. Today on World Diabetes Day, I applaud them.

Baboons, diabetes and the power of a tribe to thrive

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I watched a National Geographic special last month about baboons and thought about diabetes. Hmm…I don’t mean we are baboons, or do I?

A researcher had been studying a tribe of baboons for 30 years in the wilds of Africa. After 10 years he noted that they acted like a pretty typical tribe with all kinds of aggressive behaviors, male dominance and female submission– no, that’s not why I’m comparing us to baboons!  

Several of the more aggressive male baboons unknowingly ate toxic garbage one night and died leaving the tribe 2/3 female and the males that remained were the kinder, more socialized, go-along types. Obviously they were preparing dinner while the aggressive males were out stealing food.

Stay with me a little longer. Traditionally, baboons leave their mother after six months of life and roam looking for a tribe to join; the ones that joined this tribe after it lost its aggressive males, the researcher noted on subsequent trips back to Africa, took on the tribe’s new characteristics: the new baboons became interdependent, cooperative, highly socialized and relatively relaxed. The baboons individually, and the tribe, began to “thrive.”

Researchers then correlated the characteristics of the tribe: control, high sociability and low stress with workers in London (it was their call not mine) and discovered when employees felt that they had control in their jobs and were highly social, they experienced much less stress. I began to wonder could we put this equation to diabetes: 

Does Control + High Sociability = lower stress managing diabetes?

Examining this equation against my personal life I mused: I have control over my diabetes because:

1. I have knowledge how to manage my blood sugar and my disease 

2. I have the medicine, supplies and equipment I need to treat it

3. I have control over my emotions realizing they will go up and down, come and go and the best thing to do is learn from my “mistakes” and not berate myself.

I have sociability because I am connected to others with diabetes through participating in a support group and at health events. I can share my woes, diabetes and non, with family members, friends and health providers. I have friends and family to enjoy life with beyond my diabetes life. With control and sociability I feel confident, supported and capable which empowers me to commit to my care.

As my business management husband says this is famed professor and sociologist, Aaron Antonovsky’s famed theory: people do well despite adverse circumstances if they comprehend what is going on, have a sense they can manage it, and they feel it is worth it to do so, which comes from “belonging” to a caring tribe.

So are we baboons? I don’t know, but the principles seem worth paying attention to regarding your diabetes management. Just don’t eat too many bananas, you know they’re full of carbs!