Riva goes to Washington for Medtronic Philanthropy

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I just returned from Washington DC. For the past several years, my lovely, supportive husband has said to me intermittently, particularly when I write something inspiring, “Riva goes to Washington!” In the spirit that I should be invited to address the highest committee on diabetes at the seat of our government. My normal response is to roll my eyes at him and say lovingly, “That’s nice, honey.”

But now I can actually say I went to Washington. I was invited by Abt Associates,  who are working with Medtronic Philanthropy, to create programs that expand community-based access to care and management of diabetes and heart disease in the US, Brazil, India and South Africa. The project is called HealthRise. Above is lovely Ronaldo from Brazil. I’ve met Ronaldo before through his work as an IDF Young Leader with Diabetes.

The emphasis of the three day conference was discussing ways to engage and empower patients. The head of Abt’s Health Division had heard my Award Lecture at the IDF World Congress in December on a Flourishing Treatment Approach and invited me to share it with this group: Public Health PhDs, government reps of diabetes and health organizations, Medtronic Philanthropy grantees and patients.

If I were sixteen years old again my description of the work I got to do with the group would be “awesome.” Working with committed people in various sectors of the healthcare system, from different parts of the world, is a reminder how similar our difficulties are engaging and empowering patients – and making care accessible, especially to low income populations. And it is my personal take, that we shouldn’t be limiting engagement and empowerment to patients, but include health professionals as a group also who need to be engaged and empowered working with people who have a chronic illness.

Unfortunately many health professionals are hindered by their training – knowing only to tell patients what to do and employing little to no empathy and listening skills. Of course there’s also time limitations, crushing budgets and targets to be met and measured. You get the idea.

The highly educated conference attendees quickly grasped the value of adding a positive and possibility-focused flourishing approach to the already traditional more negative and limited-focused coping approach,  working with people who have diabetes. It resonated instinctively. The simple common sense that treating patients like human beings is a powerful connective strategy. And that health professionals aligning as partners, lending support, praising what patients do well, and bringing out patients’ resilience and strengths – that in turn fosters trust, confidence, action and skills – is wholeheartedly where we need to go.

My half day workshop was preceded by a day led by professional story-teller Noa Baum. She taught the group the craft and power of sharing our stories. Especially as telling one’s story relates to advocacy. We experienced the ability of our stories to move others and create trusting relationships almost immediately. And that attentive listening and serving as a Thinking Partner, which I had the group practice, is a gift we give others. It supports people in thinking more deeply and sharing their story with the ease and confidence of knowing you won’t be interrupted.

I commend Abt. It was a risky move on their part to use a story-teller and inspirational speaker when they could have devoted more of the conference to working on organizational and systems issues, data conversion and transference, scaling operations and such. But I think all agreed it was a risky move that paid off. People were excited and energized to see what’s possible and have the opportunity to use the other half of their brain.

At the end of my lecture I facilitated an exercise to help the group bring out strengths and resources in a partner. Then the conference closed with each stakeholder group creating a plan for how they will use what they learned to achieve their project aim.

So, yes, riva’s been to Washington. But word has it, from riva herself, that she wouldn’t mind going again.

How taking care of my diabetes could have killed me: double-dosing

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The husband above.

I panicked. Just around midnight. Minutes after I took my once nightly injection of my long-acting insulin.

Had I taken my once nightly shot, twice?

Like others with type 1 diabetes who don’t use an insulin pump, I take what’s called MDI. Multiple Daily Injections. I take an injection of rapid-acting insulin before meals and snacks to lower the rise of my blood sugar produced from carbohydrates.

I also take an injection of long-acting insulin once a day for the background metabolic functions that require insulin.

For years I took this once daily injection at 9 AM. But when I switched my long-acting insulin, from Lantus to Toujeo recently, taking Toujeo at night seemed to work better for me. Now I take it every evening at 9 PM. Yet, this habit isn’t really fully formed yet.

It was easier to take my once-a-day insulin in the morning. I’d take it at the same time I took my rapid-acting insulin to cover breakfast. But there is nothing to remind me to take my 9 PM injection.

So I’ve written it onto my computer calendar. It’s there in the box every day. Well, every night. Of course this does require me to be behind my computer at 9 PM to see the calendar alert. Sadly, I usually am, but that’s another story.

Last night, though, from 8 to 10 PM I was watching a movie on my iPad sitting on the couch. Chances are my calendar alert came up on my iPad but, watching the movie and intermittently Facebooking a friend, I likely didn’t see it.

Yes, the horrible dopamine of social media and multi-tasking had kidnapped my diabetes-tasking-mind. But I was trying to do a good deed. My “friend” had asked, “How do I adjust my long-acting insulin for flying to Germany?”

Of course this should have reminded me to take my own insulin injection. And, maybe I had. That was the problem, now at midnight. I couldn’t remember if I had. Please, no sneers, life with diabetes is tough enough.

Reviving myself from my near slumber, I ambled into the kitchen where I keep my long-acting insulin pen. I stared at the pen begging it to answer my unspoken question, “Did I stick you in my body just a few hours ago?”

When I’m not certain I can usually answer that question by remembering where on my body I injected. If that doesn’t work, I try to remember where in my apartment – in the kitchen, in the bathroom, on the couch? I was coming up blank.

When I was using Lantus, I relied on a Timesulin cap to keep track for me whether or not I had taken my shot. Timesulin is a pen cap with a counter in it. I always knew how long it had been since my last shot. Simple, yet fantastically effective.

But Timesulin doesn’t make a cap for Toujeo. And while I was using my Timesulin cap on an old Lantus pen, “shadowing” my Toujeo injections, the cap’s battery had run out just three days ago. I was in the process of getting a replacement.

Standing right at the fork of do I or don’t I, I dialed up my dose and injected. If this was my second long-acting shot of the night, I would have double my dose of insulin in my body for the next 24 plus hours.

This month I’ll have lived with type 1 diabetes forty-four years. Yet, for anyone who has it, we know every day is a new day.

Years in don’t prevent making a mistake. Or being at risk every day and every night for taking too much insulin. Leaving you wondering, as I was now, if I was about to overdose in a few hours and not wake up. Trust me, that’s a terrifying feeling.

Immediately after I took the shot, I googled, “Who has double dosed their basal insulin?” “What do you do if you take two long-acting shots by mistake?” I read the stream of comments and then followed the strategy many well-wishers suggested. Set your alarm and wake up every two hours to check your blood sugar.

I read for another hour til 1 AM and set my alarm for 3 AM. Laying there, I wondered how long it would take my husband, who was in Holland on business, to discover tomorrow that I hadn’t woken up, but had died.

Next thing I knew I heard music. It was my alarm. Instinctively I scanned my body for signs of low blood sugar: Was I convulsing? Was my heart beating frantically? Was I sweating? Were my thoughts muddled? No, no, no, no, a very good sign.

I walked to my bureau where I had laid out my glucose meter ready for the check. Before going to sleep my blood sugar was 135 mg/dl (7.5 mmol/l). Voila, a lovely 120 mg/dl (6.6 mmol/l)! I had not taken two shots. This small overnight drop in my blood sugar is my normal.

In the morning my blood sugar was 105 mg/dl (5.8 mmol/l). Fantastic, no worries. But I do worry.

It can happen again. It can happen anytime. And I wonder if the chances will grow greater that I forget if I took a shot or not as I get older.

Type 1 diabetes is not just arduous to take care of. It is a scary disease. Frightening for the almost inevitable miscalculations that will occur in a lifetime of every days.

I, like many people, have mixed up my rapid-acting and long-acting insulin. Once, exactly a year ago. Drinking a quarter cup of maple syrup prevented a near death experience then.

Insulin is a dangerous drug yet we must rely on it to live.

But please don’t forget, those of us who live with type 1 diabetes, and to a lesser degree those with type 2 diabetes who take insulin, are making daily decisions for their health – that can just as easily snatch their lives away any day, or any night.

What happens when we say “Yes”: Fruit for kids while mom’s shopping and awakening the brain in dementia patients

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I saw this on my twitter feed from Andreas Eenfeldt who calls himself diet doctor. I usually read what he tweets as he is a fellow low-carber. He’d posted the photo above.

I love that this grocery is looking for solutions rather than moaning about the problem: kids eat too much junk.

I posted it on my Facebook page and one comment that came back was, “When that banana peeling drops on the floor, and someone steps on it…watch out! Messy floor, messy buggy, messy child’s clothing. Not a good idea, in my opinion.”

Well, that’s perfectly legitimate. And truthfully I hadn’t thought of it. But once again we’re looking at the potential problem. How much better to think – okay, if the kid is left with a banana peel, then we’ll put lots of trash cans around the store. Or some such idea.

We have such a penchant, and I don’t know how much is cultural and how much nature or nurture, to look at the problem and stop right there.

My father is now in a nursing home and has dementia. So I recently watched a documentary called “Alive Inside.” It’s the story of a social worker who brought personalized music to dementia patients living in nursing homes.

He had an idea – music awakens the brain and he wanted to see if it could also do so with people suffering with dementia.

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He began finding out what music was meaningful to a number of patients in the home. He ripped those tunes onto an iPod for each patient. They got “their personal music” and headphones. People who’d barely spoken in years began to chatter. One woman who’d been in a wheelchair for two years got up and danced.

Seeing the beauty of what happened, and having a doctor agree that reaching the human soul through something like music can do more than drugs, he began to call nursing homes around the country to invite them to start such a project.

What did he initially get? “Well, we’d need an iPod for every patient. We can’t afford it.” And, “We’re not sure this will work.” He got resistance. He got small thinking. He got the company line. Luckily, he continued promoting the idea and in time many nursing homes began such a program. Of course, not enough, but it’s rolling.

If we dare, let’s think “yes” before we think “no” and then figure out how to make it possible. Yes, let’s go outside the norm to where amazing things happen by virtue of passion, dedication, commitment and being willing to buck the status quo.