Learning from PWDs who do well

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…I began this work interviewing people living with diabetes to learn their story. I discovered quickly that some people struggle, but many find ways to create healthier, more productive and more meaningful lives after their diagnosis…While not everyone with a chronic illness can, or will, become a model of success – genetics, skills, resources, capacity, supports, will, economics, values all count – we should not discount that in learning how successful people do well, we can help more people be successful.

Above is a photo of Rachel Zinman who’s been living with LADA for nine years, and an excerpt from my post today on Huff Post, What the “Forgotten Patient” Teaches Us.

There is much we can learn from people living well with chronic illness  – and much to inspire other’s living will illness and those who care for them, including health professionals.

Full article, click here.

 

 

The Patient Voice Represented by IDF at WHO Conference, Geneva

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That’s me in my swank jacket created by artist, health advocate Regina Holliday. I’m sitting in the ballroom of the Intercontinental hotel in Geneva waiting to introduce the International Diabetes Federation’s (IDF) new patient group, the Blue Circle Voices.

Patients are not nearly seen enough nor participants at the decision-making table. When we are, we need to shout about it so others can see our valued contribution and the good behavior of organizations that invite us in.

The IDF brought patients to the World Health Assembly meeting two weeks ago in Geneva. Here’s the larger story on the Huffington Post.

Missing type 1 diabetes in children ends lives

I know Betsy Ray, not well, but our paths have crossed at conferences. Lucky girl, she got to give this moving TEDx talk about diabetes. Its beginning caught even me unaware and  makes a point, quite dramatically, that we need to teach providers to recognize type 1 diabetes in children. Betsy goes on to give us important information. She is moving in her delivery and carries a very important message.

Headed to World Health Organization to represent IDF’s Blue Circle Voices

The Blue Circle Voices is the International Diabetes Federation’s (IDF) group of people with diabetes around the world advocating for better care in their country. We are the ear on the ground for the IDF regarding access to care, education, prevention, promotion of healthy lifestyles, discrimination – and we are the experts who live the experience of diabetes. IDF’s intent is to consult with the Blue Circle Voices on new initiatives to truly be the global voice of diabetes.

We are 102 men and women with varied types of diabetes and people connected to diabetes. We are newly created so emerging, but so far I have provided feedback on surveys, created a testimonial video, which I link below, and now will be introducing the group at the WHO in Geneva. It’s an honor.

Here’s my video where I share a personal experience of diabetes discrimination. While I personally don’t come across it often, for many it is ubiquitous in daily life.

Okay, gotta go pack!

 

Sign up for Livongo’s glucose management program and you’re making a charitable donation to diabetes research

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I’ve been using the Livongo system for the past two years and I’m a happy camper. Now the progressive company in Mountain View, California has taken another milestone step.

Livongo, a glucose management/support program (advanced meter, unlimited strips, digital tools, personalized messaging, coaching)  announced a few days ago a partnership with the American Diabetes Association, JDRF, Diabetes Hands Foundation and Beyond Type 1. They aim to generate millions of dollars for research and advocacy for their new partners. More info here.

How? By launching the Livongo Family Care Plan. That means for everyone who signs up for the plan (outlined below) through Diabetes Hands Foundation, JDRF and Beyond Type 1, Livongo will donate $3 every month to that organization. So, you in effect, are making the donation.

I use Livongo and I will tell you twice I had a professional call me when my blood sugar number was under 55 mg/dl on the meter. Standing alone in my kitchen, and having the phone ring minutes after my reading came up, with someone from Livongo asking if I was okay was amazing! Trust me, there is nothing like knowing there is someone else out there who knows you may be in trouble.

From one company that will benefit, JDRF President and Chief Executive Officer, Derek Rapp, said, “With this partnership, not only do people with type 1 diabetes benefit from access to this innovative program, JDRF also receives important funds that will go directly toward finding a cure.”

Livongo’s Family Care Plan is a comprehensive diabetes program that provides support at critical moments for people with diabetes and those who love them. The monthly subscription is $49.99/month for which you get:

• An advanced glucose meter that uploads readings and gives tips and insights. Studies verify Livongo is one of the most accurate meters around.

• Unlimited test strips – yes unlimited!

• 24/7 live outreach from diabetes specialists when numbers are out of range

• Immediate text messages to update family and friends, if you chose

• Coaching via phone, email and text for education and support

If you can benefit from a great meter, education and support, check it out, and know you’re also helping us move toward a cure.

It warms my heart to see a player in the device market come up with such a winning strategy, to help people with diabetes through their product and program, donate to diabetes charities and strengthen their own company to be able to continue to help us.

Thank you Livongo.

 

Three new books by people living with diabetes

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I have a stockpile of books everywhere – by my bed, under the coffee table, behind my computer chair. Yes, I still move in the old analog world; I like a real book in my hands.

Three that have passed through my hands recently are all diabetes books written by  those who have diabetes. They are three authors I know personally and consider friends, and they are sharing their wisdom and experience for everyone living with diabetes.

I have covered these books on the HuffPost as it’s now called. For the reviews check here for Adam Brown’s Bright Spots & Landmines: The Diabetes Guide I Wish Someone Had Handed Me and Oren Liebermann’s The Insulin Express: One Backpack, Five Continents, and the Diabetes Diagnosis That Changed Everything.

If you’re pregnant, or your wife or girlfriend is, or you plan to get pregnant, or your wife or girlfriend does, you’ll want to take a look at Ginger Vieira’s and Jennifer Smith’s book reviewed on HuffPost, Pregnancy With Type 1 Diabetes: Your Month-to-Month guide to Blood Sugar Management.

Dipping the cloth again – inside

My purpose.jpgWhile the husband is off on an intensive weekend of Chi Gong (sorry, not for me) I have used his budding spiritual growth to spur me back into my own. I learned Transcendental Meditation during college and practiced for years – until an advanced retreat course caused me to back off. But I never forgot something the man who brought this form of meditation to America, Maharishi Mahesh Yogi, said – Meditation is like dipping a cloth in paint and letting it dry in the sun. Each time you meditate, you dip the cloth in the paint again, and it retains more color – or calm.

I keep this on my desktop from Don Miguel Ruiz’s book, The Four Agreements:

  1. Be impeccable with your word
  2. Don’t take anything personally
  3. Don’t make assumptions
  4. Always do your best

This past week, thanks to the amazing library on YouTube, I have been watching Eckhart Tolle and compassion videos. On the subway I’m reading on my iPhone a book on solution-focus brief therapy. Yes, high-tech spiritual delivery. I know there’s something odd about that, and yet…

I scribbled this down from my subway read because I thought it wise to remember. The point is the value of positive emotions and what we focus our mind on, expands:

“Whether you are sitting in your living room, using the bathroom, driving your car, or riding a bus or train, ask yourself, “What is right about my current circumstances?” “What makes me lucky to be here?” “What aspect of my current situation might I view as a gift to be treasured? How does it benefit me or others?” Taking time to think in this manner ignites gratitude. Take a few moments to savor and enjoy this good feeling. Now turn positivity off. Examples of positivity-spoiling questions are “What is wrong here?” “What is bothering me?” “What should be different and better?” “Who is to blame?” Ask yourself these questions, follow the chain of thoughts they produce, and see how quickly positivity plummets.” —( 101 solution focused questions for help with depression, Fredrike Bannink).

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It’s actually quite nice to make a concerted effort to have a calm mind, breathe in and out and know in this very moment all is well. Oh, and there is one low-tech practice I’ve started to do each evening that gives me a double dose of joy. It’s writing in a gratitude journal – The five-minute journal – with my oh-i-just-love-them fountain pens.

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Presenting at the premiere Charles H. Best Diabetes Centre in Toronto

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I was honored to be invited to present the Flourishing Treatment Approach to 300 diabetes educators, nurses, dietitians, social workers, pharmacists and physicians at the 6th annual Charles H. Best Diabetes conference last Friday.

Forget the fact that the night before going to Kennedy airport for my flight there had been a water main break and all cars were being diverted away from the airport. Forget the fact that I had to travel on a bus, railroad and the AirTrain to get there. Forget the fact that my flight left 90 minutes late and when I arrived in Toronto I had no idea how to get to my pre-arranged car because I had no phone plan for Canada. Yes, Canada is a separate country.

Ignore the fact that when I did find the car we drove in a wicked thunderstorm 90 minutes to the hotel. That I dined alone at 8:30 pm in the lobby pub of the Sheraton. That I had to climb on some cabinets (up to my childhood antics) to pull the plug out of the full size refrigerator that was making a racket of noise in my room. That I barely slept and woke at 6:30 am to spring into action. Forget it, ignore it, because none of it matters. I realize like a pregnant woman (no, I’m not, don’t start any rumors) who forgets the pain of childbirth, I forget the pain of flying and hotel living. Because when you get where you’re going and you do what you do, it is soul-gratifying.

Conference day at 10 AM, as I walked up the staircase to prepare the room where I would give my workshop, I stopped in my tracks seeing this poster (above) on the stairs. What popped into my head was a palm reader’s prediction,  (I went to many readers when I was in my twenties searching for the meaning of life, my life) “You will be known, not by your face, people won’t follow you down the street, but many will know you by your work.” An amazing prediction at the time. And there it was, this poster sitting at my feet making me recall that prophesy and feel slightly heady. As I did the whole day.

There is such a dearth of tools for the professionals who dedicate their lives to working with people who have diabetes. And most of these tools, and the approach most providers have been taught, is old-fashioned thinking and limited; I bring them fresh air and fresh insights. I am also advantaged at conferences by not being a medical person. I do not come armed with clinical statistics and bullet-riddled powerpoint slides. I come with a patient’s experience, pictures that evoke feelings and tap into intuition and ideas that provoke one’s mind and the status quo. My opening slide for example:

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I am in my element on stage which is still a wonder for this girl who grew up so shy. But I feel the love and support that emanates from the floor, it comes in waves rising to meet me. Before I take the stage my body is flooded with stress hormones and my blood sugar surges (yes, this career will kill me) but once on stage I am relaxed; I am where I should be. I revel in each nodding head affirming what I say, in the eyes that follow mine, and last Friday in Toronto, in the unexpected standing ovation that greeted my close.

I have been told that I embody my message. In that way I can almost not fail which is a comfort. But it is the connection, the open heart and offering that I come with and the open hearts and willingness to hear that my audiences return, where the magic is made. Thank you I do not take it for granted.

We rarely know how much we affect others’ lives: I learned last week.

I love that 1946 Christmas movie, It’s a Wonderful Life. Jimmy Stewart and Donna Reed. Hard-working and kind George Bailey, Stewart’s character, feels he’s let all his neighbors down and wishes he’d never been born. But an angel, Clarence, comes down to Earth to show George what the world would have been like without him. It’s not a pretty picture: the town has gone to ruin and George’s brother dies because George wasn’t there to save him.

Flash forward to now, my life. Out of the blue I got an email from a young woman, Daniela Rojas. Daniela has type 1 diabetes and told me how much I’d changed her life.

I asked her permission to post her message to me for two reasons. One, I was so moved I could barely contain myself. Two, we need to remember in all the hard work we do as advocates, we impact people every day, everywhere. It’s easy to forget because we seldom hear the stories.

From Daniela Rojas – (Whom I have since discovered is a psychologist and writes a blog at Diabetica Solutions.)

Hi Riva,

I would love to share your impact in my life, it truly would be an honor.

You must know I not only loved your talk (at the International Diabetes Federation’s 2015 World Congress), but also your answer and participation in a hypo session in Vancouver. In both you showed me that it was ok to live a life with low (blood sugar) numbers. The reason your words meant so much to me is a long story. If you don’t mind I’ll try to tell it to you.

I had a very “traumatic” debut (with diabetes). I was in a coma for three weeks, I had to stay in the hospital for a long time.

Before my diagnosis, I used to be a ballet dancer. I was very good actually and when I got diagnosed and then was at the hospital I was very worried about missing my ballet classes. I kept telling my mother they were going to kick me out. I told her this every single day in the ICU. She kept telling me not to worry and at the time neither of us really understood what was wrong with me or what type one diabetes really was.

One morning I was telling my mother once again that I wanted to get out and go to ballet class. At the time there was a med student in the room and he came over and told me “You need to stop thinking of ballet, you will never get to dance again. Ballet shoes will hurt your feet and if that happens because of your diabetes I am going to have to cut your feet off.”

I can remember that exact moment as if it was this morning. I remember holding my mom’s hand and telling her I didnt want to loose my feet, and her telling me that she was going to do everything to prevent that from happenning.

After that incident they tried to explain what type one diabetes was, and a very kind doctor told me the key to prevent any complications was to have low numbers daily, not hypos (blood sugar below 80 mg/dl) but low numbers. She said that could help me be healthy for the rest of my life.

Back then, this was more than 25 years ago, I had no access to glucose meters. I actually got my first one almost 4 years after my diagnosis when my mom went on a work trip to the States and managed to buy one. I remember my first reading was around 400. It was awful and so scary, I couldnt get that doctor’s words out of my head. After I could do daily readings, I started working to have low numbers, which plenty of times ended in a hypo.

For the past decade or more I have had HbA1c of 5.8, 5.9% and the highest of 6.0%. A lot of people keep telling me that’s a problem. That I am probably doing things wrong and that I am going to end up hurting myself.

That’s when you come in. I went to the hypo talk with Wim. You were sitting a row ahead of me. After the presentation ended, the lady who was on the panel said it was almost impossible to have low numbers without lots of hypos. If I’m not wrong, she even said it would be easier to watch a unicorn than coming across a person with type one with low HbA1c throughout a long period of time.

Then you stood up and asked for the mic. You said that was not true. You said you had been living a low carb diet and had amazing numbers for a very long time. There was a girl from Australia sitting next to you who felt the same way, and you said she had managed to do it herself as well. At that moment Wim came up to you and told you that I had done the same thing. You looked at me and told the lady us three had done it. Then she said we should probably work together on a book to help others get that.

You told as well that you have had hypos, but you manage them, you’ve learned and most importantly had been able to remain healthy throughout your entire life with diabetes.

You have no idea what that meant to me. I had finally found someone in the world who knew what I felt, and believed and didn’t ask me to be afraid of my body, not even my hypos.

In your talk you shared a story where you had a hypo and your husband helped you with it. That made me happy, made me realise that asking for help actually shows how strong you are as you are doing everything to survive. What’s stronger than that? It made me feel comfortable with the fact that at times sharing our hypos with others gives us the chance to choose between feeling stronger or more afraid and paralyzed. The way you talked about it made me feel so comfortable in my own skin that it actually allowed me to talk to Wim about this hypo project and here we are.

So thank you, thank you, for inspiring me. Without you knowing it you made me feel safe within my own self. Thank you for letting me see that what I had in my head was real and made sense, even though it is not what everyone else thinks.

Most of all, thank you for empowering me to share my life stories with someone other than myself; I really can’t thank you enough.

Hope you have a lovely Sunday afternoon, once again thank you very much.

Best regards,

Daniela Rojas

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I had a lovely Sunday, Monday, and now Tuesday afternoon. What we say, what we do, we will rarely know how it affects someone. You have to trust that it does. And every once in a while an angel, like a Daniela Rojas, all the way from Costa Rica, will pop out of the blue and tell you so.

Low carb recipes from Dr. Jody Stanislaw

Even though I really don’t bake, I always have an eye out for low carb treats. I’ve made almond bread which I love (should do it more often) and I regularly make chocolate biscotti with almond flour. So when my friend, naturopathic doctor and CDE Jody, who has type 1 diabetes herself, shared these recipes on Facebook, I thought they were well worth repeating. All simple and fast. The first two – the muffin you make in a coffee cup in the microwave – I live on, literally.

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1. Dr. Jody’s Super Fiber-rich, Low-carb Quick & Easy Flax Muffin:

Put into a coffee cup:

• 1/4 cup ground flax seeds

• 1 tea cinnamon

• 1/2 tea baking powder

….mix together in a coffee cup. Then add:

• 1-3 tea melted butter or coconut oil

• 1 tea vanilla

• 1 egg

• sweetener of your choice…the only one I recommend is organic stevia (check

out the powdered form by NOW)

….mix it all up

Optional extra ingredients:

• just a few small banana chunks (which make it super creamy & delicious)

• a few blueberries or chopped strawberries

• chopped nuts

• raw cacao powder (or cocoa powder) and few banana chunks, with or without

nuts

• try making it a mocha muffin!…add a tablespoon of raw cacao powder and a

spoonful of ground coffee. I have this one every morning!

• try a carrot cake muffin!…add shredded carrots to the dough, and then top the

cooked muffin w/ whipped cream cheese

Microwave for 45-60 seconds and enjoy! Be sure not to overcook it because

otherwise it will be too dry so experiment with timing since all microwaves are

different. If you have more time, to retain more nutrient content, cook in the oven at

325 for 7-12 minutes (experiment with that timing so it’s not too dry). **Due to very

high fiber content, be sure to drink 8oz water/tea/liquid with muffin.**

Enjoy for breakfast, as a snack, or an after-dinner dessert! All of my patients do.

2. Chia Pudding

• 1/4 cup chia seeds

• 1/2 cup milk of choice

• 1/2 – 1 tea vanilla

• stevia to sweeten

Mix together in small cup or bowl. Put in fridge for 10 min to allow time to thicken.

Please note, you really don’t have to be exact with any of the amounts of the

ingredients…as long as you mix chia w/ liquid and let it sit, it will thicken up. It just

depends on how thick you want it.

There are lots of variations with chia pudding so experiment! Here are some optional

extra ingredients to play with stirring in or adding on top:

• Berries

• Nuts

• Cacao powder (or unsweetened cocoa powder)

• Unsweetened coconut flakes

• Peanut butter

• Cacao nibs

• Cinnamon

• Pumpkin spice

Enjoy for breakfast, as a snack, or an after-dinner dessert!

3. Creamy Frozen Dessert

To make the base, put into a blender:

• 1/2 – 1 avocado

• 1/4 cup coconut/almond/soy milk

• 1 tbsp chia seeds

• 1/2 – 1 tea vanilla

• stevia – sweeten to taste

• 2 -4 ice cubes

Be creative with the exact amount of ingredients. The goal is to just get it to the

consistency of frozen yogurt. If it’s too thick, more milk. If it’s too runny, less milk, or

more avocado or chia. Blend all ingredients, then add your choice of additions below.

• Frozen berries (When using frozen berries, you don’t need to put any ice in.)

• Chocolate ice cream: raw cacao powder (or unsweetened cocoa powder)

• Peanut butter + chocolate chips

• Frozen banana chunks (cut up your old bananas into small chunks & then

freeze on a plate. Once frozen, store in freezer in tupperware to use in your ice

cream!)

Enjoy as a dessert or even as a meal!

4. Nut Fudge:

Put into a high-powered blender: (a standard blender may not work)

• at least 1/2 cup of your favorite nuts and/or seeds (peanuts, almonds, walnuts,

pistachios, sunflower seeds, etc)

• 1-2 tbsp of raw cacao (or unsweetened cocoa powder) –> amount depends on

how rich you want it to be

• stevia to sweeten to taste

Blend well and enjoy!

5. Chocolate Milk/Hot Cocoa

• 1 cup almond/coconut/goat/soy milk

• 1-2 tbsp of raw cacao (or unsweetened cocoa powder) —> amount depends on

how rich you want it to be

• stevia to sweeten to taste