DiabetesMine Patient Voice Summit

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Last year I had the pleasure of being a judge for the Patient Voices Summit. That meant I got to look at a lot of good ideas for ways to make living with diabetes easier and meet a lot of cool people – both patients and in industry on the big day.

Now it’s your opportunity. Share your best mentor tips –  how can YOUR experiences navigating the rocky waters of blood sugar control help others living with D? – and you might just get flown to beautiful Northern California to be part of the full day summit – for free.

Less than a month to enter, so don’t waste any time. See here for full details. And, good luck!

Help to sail through your T1D pregnancy if you’re expecting

My friend Ginger Vieira, who used to be a staple on the social media circuit, took a break a little more than  a year ago to have her wonderful daughter Lucy. Naturally Lucy is already making her social media debut in the video below.  And naturally, Ginger’s back wanting to help other women with type 1 who are pregnant to sail through their pregnancy safely and without hitting any troublesome storms.

Ginger and CDE Jennifer Smith, from noted CDE Gary Scheiner’s office, are half way through writing their Guide to Pregnancy with type 1 diabetes. To cover the publishing costs they’ve just kicked off a kickstarter campaign. Have a look and help them bring this to all the women who have hardly any resources to have a safe pregnancy and healthy child. I do have to say I know few women who are more kind, earnest smart, and best of all now, an expert on this topic to learn from.

You’ll find this on the kickstarter page amidst the sign up information:

Cartoonist Haidee Merritt laughs at diabetes again in her second book

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Haidee S. Merritt is a talent unlike any other. Her cartoons are little bursts and fits of humored and discomfit living with diabetes. She sticks a childlike tongue out at diabetes – for all of us. And why not? Haidee got type 1 at the age of 2. And I will tell you, living with retinopathy, Haidee’s dedication to this work is all the more spectacular.

About  her new book, Fingerpricks, she told me, “Before putting this book together I’d never noticed two of the re-occurring themes in my FingerPricks™ series. I would call these themes the undertow. One is the presence of fear in a diabetic’s life (historically, this diabetic). The other is the importance of numbers. Believe me, no ones more surprised than me; it certainly wasn’t intentional. Overall I see the book as a scramble of comedy, sadness, honesty, sarcasm and truth. A lot like my life.”

I asked Haidee to tell me which of her cartoons in Fingerprints is her favorite. This one:

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Of which she said, “This still brings a smile to my face. It touches on the self-awareness—and self-absorption—that comes with a diabetes diagnosis. One character questions our small role in the universe while the other focuses solely on himself, as if the universe revolves around him. For most of us, it’s easy to pick the diabetic: the one complaining about high blood sugar. Personally, diabetes keeps me so focused on myself and my needs that it’s shamefully easy to lose perspective.

As for me, I picked two of my favorites:

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For me this says it all. Diabetes is something you truly can’t understand unless you also have it. We are living in two different worlds, and that truth is also unseen. This one below was just so true for the recent experiment my husband and I have conducted sharing my blood sugar numbers from my CGM.  I wrote about it here:

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Haidee’s first, no less brilliant, book is One Lump or Two? It was what got me to ask her if she would illustrate the cartoons for my last book, Diabetes Do’s & How To’s. I felt her humor was the perfect compliment to the work of taking actions to improve our blood sugar management.
And since we gotta do the hard work, I say laughter should be counted as a necessary medicine. And if you get your copy from Haidee’s website, you’ll receive an autographed copy. Keep ’em coming Haidee.

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Sharing something most intimate, my blood sugar

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“It’s like I’m wearing you on my watch,” my husband said smiling shyly,  a bit tentative.

It’s been one full day that I’ve been using my new Dexcom G5 CGM – and sharing my blood sugar numbers with the husband. I’ve never shared anything quite this intimate before. If you have diabetes you understand that. Sharing my numbers exposes me: each attempt to keep my blood sugar between those red and yellow lines.

This co-mingling is new terrain for the two of us. While my husband’s enormously supportive, I’m naturally the one who checks my blood sugars ’round the clock and decides what to do about them, when and how. He may notice I’m low like when I return from a morning walk pale or when he hears the plastic coming off the SweeTarts I’m unwrapping. But his caring and concern previously were as a spectator.

Now we both feel he is inside my body, no joke intended. His eyes check my 5-minute glucose numbers on his Apple watch as frequently as my fingers bring the app up on my iPhone. Last night discussing this, he had tears in his eyes telling me what it means to him that he can now keep me safer. For while I didn’t set the share alarm to alert him if my blood sugar drops below 55 mg/dl, not wanting to unnecessarily disturb or burden him, he set it for himself. “I can better protect you now,” he said. And I realize I do feel safer.

Just after lunch today both of us heard the alert that I had dropped below 75 mg/dl due, I now realize, to the after effect of a two hour walk. I went into the kitchen and ate something. Fifteen minutes later he said, “You’re 63.” “I know I said, I’m giving it a bit of time.” “Does it bother you if I tell you that you’re 63?,” he asked crossing this new terrain. “Not yet,” I said.

We know this is new territory we’re exploring. I know this will give him the closest experience of what it’s like to live with type 1 diabetes. What it’s like to constantly have a ticker-tape running in your head calculating what your blood sugar is, if it’s okay where it is, what caused it to be where it is and do I need to do something about where it is, now? I can see him already making the little mind calculations himself as if he were me.

We tread lightly. We realize we may need to establish some friendly boundaries as this sharing continues. We also feel some bedrock has shifted. For while he used to check my CGM in the morning to see whether I was sleeping safely, he can now follow me throughout the day, and at a distance. Like when he’s overseas on business and I’m at home, and know that I’m okay.

I see a deeper understanding penetrate through the skin beneath his Apple watch. The current carries what it’s really like for me to manage my blood sugar every hour, every day, every week, every year. The weight of it lands smack inside his heart.

For even after 15 years of marriage, seeing my diabetes management up this close is a game-changer. And, truth be told, there’s something profoundly satisfying for me to see this transformation occurring in him.

The rest we’ll just have to figure out as we go.

 

Late to the game: getting and setting up my Dexcom CGM G5. It could have been better.

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(Screen of the G5 app on my iPhone)

Yes, I’m one of those: I had a Dexcom G4 and was all excited about it the first few weeks and months and then my enthusiasm waned. But really there’s a very good reason.

My life is generally very predictable and routine. I work at home, and so can control my food and exercise. So after I saw my routine life on my Dexcom for a few months, it didn’t reveal to me anything new of much value.

But I used it pretty religiously when I traveled. After all, that’s when I’m out of my routine. It didn’t matter whether I was going to Pennsylvania overnight to give an A1C Champion peer-mentor program, or going to Holland for two weeks, I strapped on Pinkie. I did so a few days ahead of time because the first day’s numbers are unreliable not having yet synced with my meter.

Then, remarkably, for I would not have guessed it, I tired of doing this too. Little by little, Pinkie stayed behind when I went to Buffalo or London. I just wasn’t a big fan of wearing a device (no, I don’t wear an insulin pump). Plus I had another issue.

When I’d see Pinkie’s little arrow pointing upward toward the sky I wanted to stop it. More than anything, I wanted to stop those escalating white little spots before they went past my yellow line. So, I’d give myself some extra insulin. Splat! An hour later I was dropping low at a ferocious rate. No one to blame but myself. Operator failure FULL STOP! And I was tired of this routine too.

Pinkie’s (if you haven’t guessed, Pinkie is the name of my Dexcom G4 receiver) been laying low now, retired for about a year. But in a few weeks I’m going on a big trip – 14 cities in 3 days, okay, not exactly, but 5 cities in 5 weeks with tons of time zone crossings – and I figured it was time to pull her dance card out again.

Little did I know but what happens to many people when they retire happened to Pinkie. She died. And none of my numerous, pleading charges could bring her back to life.

That began my frantic scurrying to get a new receiver before my trip. Which I did, and I now have. But it was not without enough headaches to make a Monk race for his Frangelico! The minor migraine includes the fact that I was moving from a Dexcom G4 to  G5 that would now use an app to show me my results on my iPhone. Steep learning curve here – for me.

You likely know this getting anything from your insurance company game. First I called my insurance company to find out what the Dexcom G5 would cost me. They sent me to my durable goods supplier, who sent me back to the pharmacy division of my insurance company.

They could give me a retail price, about US $2500 for a receiver, two transmitters (they only last 3 months now and are programmed to shut down 90 days from when you start them) and a 90 day supply of sensors, that means 12. They could tell me the retail price but not what my insurance would cover. So it was close your eyes and jump. I did.

I had my endo submit a script for the CGM of course only to be contacted again to submit prior authorization. I had been made aware this was likely how it would go, but not the fact that when my insurer called my endo for the prior authorization, they didn’t have her new office phone number. And everything halted to a stop. Did anyone call me for the correct number? No, for five days when my request sat. It was only reinstated because I called to check on how things were progressing. Mind you my big trip was only weeks away.

Proper phone number given, I held my breath. Remarkably, the wheels were set in motion and without another hitch Pinkie 2 showed up ten or so days later at my door. Then the real fun began…

For some reason you don’t get a full user guide/set up guide or a video. You get a small booklet from which to set up this CGM with all its wizardry on your phone. And I am a low-tech fool and allergic to apps.

First I plugged Pinkie in to charge her not realizing she’d come fully charged from the factory. I didn’t realize because IMHO the battery icon stinks. It’s shaded in grey and hard to read. Then the transmitter icon kept flashing so I figured I’d walk through the app to see what’s what. I realized I could only get through a few first screens before I had to be wearing the sensor to set the app up. So, I stopped. It was past 10 PM. I’d sleep on it.

Rested, this morning I went into action. I put on my new sensor and transmitter (I always have to watch the insertion tutorial because I find the finger placement awkward.) Then I continued reading through and filling out screen after screen in the app. By screen 15 (okay a slight exaggeration) I was so farmisht (Yiddish for mixed up, crazy) I went desperately googling for a set up video. Luckily some nice man put one up. Here it is if you need it.

The video tipped me off to the fact that I had to set up both the app on my iPhone and the receiver for the 2 hour warm up period. Done, I decided to go for my hour walk and finish the set up when I came home. Nearly home, I get a beep from my phone. I look down on the screen, “Signal loss.” Sh&t!

Luckily, when I got home and my phone and receiver cozied up on my desk, the lost signal was remedied. When the warm up period ended I did my two calibrations with my meter and entered the numbers on both my iPhone and receiver. Now we’re swimming.

My IT husband showed me how to set up a widget so i can see my blood sugar without having to first swipe the unlock on my phone, enter the 4 digit code and tap on the Dexcom app.  And, woa, since I’m sharing my numbers with him, he just showed me how they pop onto his iWatch! Okay, I might have to get one of these watches…

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But for now, since I am a controlling, analytical, researcher-crazed Virgo, I’m off to read the small G5 booklet cover to cover.  

We know how to reduce obesity so why are we stalling…

…says Dr. David Katz, leader in integrative medicine, nutrition and public health. And, I believe him. We do know how to reduce obesity. According to Katz every eating plan, from Atkins to Paleo, from The Zone to the Mediterranean, while they differ somewhat share the same basic healthy foods: mostly vegetables and fruit, healthy fats like nuts and seeds, avocado and olive oil, some lean protein, whole grains, legumes and not a lot of red meat.

Katz says we need to stop fighting over this plan or that, this nutrient or that, and focus on just eating mostly whole, real foods. As Michael Pollan, author of Food Rules, put it, “Eat real food, mostly plants, not a lot.”

Katz is forthright in saying we obfuscate declaring this is the way because media’s ratings go up when we disagree or shout about new diets, big food manufacturers profit while making people believe Doritos are healthy because they took out the fat, and society so far has been unwilling to do the hard work – making our environment conducive to maintaining a healthy weight. As they say in public health, ‘People will make the healthy choice when the healthy choice is the easy choice.’

Here’s Katz in a brief 5-minute video that sums it all up and a longer article, one of many, that puts the whole discussion to bed.

What Community Health Workers Can Teach Us

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I wrote about this topic in my most recent article for the Huffington Post.

I believe in addition to the cost-savings Community Health Workers (CHW) offer helping to fill in gaps in healthcare where professional health providers don’t exist, they also offer a second cost-savings benefit.

This benefit is largely unseen. But CHWs may be even more effective than HCPs at helping patients begin healthier behaviors. As members of their community drawn to serve their neighbors, CHWs foster relationship, trust and self-regard in those they see more than most of us feel from visits with our more highly trained health professionals.

For the full article click here.