What character does diabetes play in your life?

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Daniela Rojas above at Dia Vida Diabetes Youth Camp, Costa Rica

It is my great honor and pleasure to know Daniela Rojas. Daniela was born and raised in Costa Rica, is a psychologist, has had type 1 diabetes since the age of 9 and is helping people with both type 1 and type 2 diabetes develop greater emotional strength to manage their diabetes.

I wrote about a diabetes camp Daniela ran, the first of its kind anywhere, on LinkedIn. At this 3-day adventure camp she used my book, The ABCs of Loving Yourself with Diabetes, (the translated Spanish version) as a tool for 70 kids to share their feelings, fears, concerns that a life with type 1 diabetes brings.

Two weeks ago Daniela pioneered again a resource for helping people with type 2 diabetes manage their condition, again using my book. She designed and ran a workshop titled, “Diabetes as a character in your life.” She had 30 participants, men and women, think about the character that diabetes plays in their lives, and read an essay in my book that touched them relating it to how they can put that character in its proper place.

The inspirational essays in the book helped people to express their concerns and bond with one another, and themselves, taking back their lives, with confidence and hope, from the “character” to whom they had given it.

 

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It’s funny to me that a young woman in Costa Rica is doing this important, essential work while it’s almost impossible to get any funding for the psycho-social aspect of diabetes or even have an institution that would allow interventions such as this for local people with diabetes.

Daniela is creating her own beautiful story. She is touching the lives of so many who are bereft of emotional support and knowing they will come through this. I’m only grateful I can play a small part.

One of the pages from The ABCs of Loving Yourself with Diabetes

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How to restart a Dexcom G6 sensor and what to watch out for

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Tape I use (except when I forget) to keep my Dexcom sensor on. Comes in a roll. You can order online, sorry, I’ve forgotten what it’s called or who makes it.

Restarting a sensor is easy. When you start your sensor session keep the code of that sensor written down somewhere because you will need it do this easy restart.

(This is the more complicated way if you’ve not kept your code. It’s the second method offered, the first one is what I describe below.)

Easy restart in 5 steps

Let sensor expire
Restart it choosing “no code.” Let it run 15 minutes
Stop the sensor session (It will tell you you can’t restart but it’s not true)
Restart the sensor with the code option
Sensor will begin its 2 hour warm up and you’re good to go

What to watch out for? Twice it’s happened to me. While my sensor is on its second round, it falls off. Usually I’m changing my shirt and that knocks it off or some such thing. The point is that the tape has loosened to the degree that the slightest movement will knock it off your body. I don’t usually find I need to use additional tape on my first 10 days but I stupidly forget I absolutely need to do so entering the second 10 day period.

If you call Dexcom they’ll give you 10 clear, tape covers cut to cover over the sensor’s adhesive. I bought the medical tape I use a long time ago on the internet, but I’m sure you can google it and find out what many of us use. If you’re reading this and you use a tape you like, please share.

As for sharing I want to thank my fellow T1D bloggers for putting this information out there, (up there in this blog) because this is how I first discovered a 10 day G6 Dexcom session can become 20.

I’ve only restarted my sensor twice, since discovering this, and not tried restarting it for a third round so I can’t tell you whether or not you’ll be successful. But, hey, if you get that far, you can always give it a try.

Abbott and Sanofi enter new partnership for data sharing

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Abbott produces the very popular FreeStyle Libre flash glucose monitor. It’s largely like a continuous glucose monitor yet distinct from Dexcom it doesn’t have alarms, it lasts 14 days and you get your numbers by waving a small reader over the device.

This new collaboration will progress data sharing between the FreeStyle mobile app and Sanofi’s cloud connected apps and future smart insulin pens.

The expectation of course is that this data sharing, when available (don’t know currently) will enable people using the devices and their doctors to make better management decisions particularly around insulin dosing.

Yet another example of looking at the clouds to make everyday life here on the ground easier living with diabetes.

For more information, click here.

 

Join the NYC vigil and insulin protest Sept 5

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If you’re in NYC this Thursday Sept 5, join advocates of T1International gathering for a vigil for those who have died due to the high cost of insulin, and holding a peaceful protest. I spent yesterday, my birthday, helping to paint slogans on signs for the movement.

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Since 1996, the list price of insulin has increased by over 1200% in the United States. Eli Lilly’s Humalog insulin increased in price by 585% between 2001 and 2015 alone.

“People with type 1 diabetes are tired of watching our people die from debilitating insulin prices while pharmaceutical companies like Eli Lilly rake in billions in profit,” said T1International’s New York Chapter Leader Lauren Lehrer. “The emotional and financial weight of affording our care is ever-present in our lives and the lives of our families. Our vigil is a call to hold insulin manufacturers accountable for price-gouging patients. Eli Lilly, Novo Nordisk, and Sanofi business practices are killing and maiming us. We gather to say no more.”

Now that I’m on Medicare, after four months of partial insulin coverage you fall into the donut hole, meaning the majority of the cost of insulin is on you. It’s incredible at 66 after 47 years with type 1 diabetes I’m forced to think which friend in Canada I will visit to bring insulin over the border.

This fight about the high cost of insulin (unaffordable for too many without health insurance) is gaining momentum predominantly from the grassroots efforts of those of us who live with diabetes.

So wielding a white paintbrush yesterday seemed like a perfect way to spend my birth day.

The blood sugar and the corn muffin (or diabetes selective memory)

Somewhere on a road trip in New Jersey my friend and I stopped at a diner for lunch. Honestly, I haven’t eaten a muffin, scone, bagel…in years, and years. But for some insane reason my mind said, “Oh, let’s have a corn muffin today.” A treat. Oops, without knowing it I was experiencing “diabetes selective memory.”

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When we sat down at the diner for lunch it was 2:20 PM and my blood sugar was 74. An hour later, after taking what I thought would cover the amount of the muffin I ate – half the muffin – I saw this.

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Yikes, I took more insulin. A short while later I saw this…yikes, I took more insulin…

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The high point, no pun intended was 202. Then it began to come down. Luckily I never crashed. It settled at 112 at 6 PM.

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This experience was a stunning display of a remarkable head space we fall into that my friend termed, “diabetes selective memory.” Who was I kidding, two units of insulin for that fluffy yellow, spongy carb bomb called a corn muffin? I knew better, somewhere in my global memory.

When my friend came up with the term she’d been denying the fact that eating lots of carbs and fat shortly before bed raised her blood sugar to almost 300 at 3 am even though when she went to sleep her blood sugar was perfect.

She knew better. She saw the rise night after night but somehow wiped it completely from her memory. I too chose to not remember what a muffin will do to my blood sugar. Yes, it had been a long time since I ate one, but still, this was a clear case of DSM.

Was it worth it? Not so much. Maybe if the muffin had been more delicious I could say yes. But it reminded me that if I have one again in another ten years, I’ll bring two insulin pens to make sure I can cover the rise. 😉

Insulin’s indirect path. Diasome is working to change that. Plus, my post for them – on innovation.

It’s a funny thing that we’ve known for a long time injecting insulin is a poor way to get it into our system. It doesn’t go directly where it’s needed and its path isn’t the same path as when insulin is released in a body that makes it. Yet, even though we’ve known this for –  ever, few have done much to improve this faulty system.

I don’t normally put stock in research companies working on tangly problems like this, but I’m intrigued and attracted to the idea that a company named Diasome is working to change this. They regard where insulin goes as important as dosage and timing. And so do I.

On another note, I wrote a guest blog post for them as they want to bring thought-provoking thinking from the diabetes space onto their site. I wrote about innovation, what we’ve seen over the years — and what we haven’t. Clue – it has nothing to do with technology.

Diasome’s explanation of where injected insulin goes and where it should

diaTribe, one of the best resources for diabetes news and information

If you don’t get diaTribe delivered to your inbox weekly, you should. Obviously if you’re reading this either you or someone you know has diabetes and you like to learn.

diaTribe is the online newsletter put out by the amazing Kelly Close and her team. It captures what’s happening regarding new medicines, guidelines, devices, policies, conferences, people, thinking and the wonderful Adam Brown’s weekly musings about staying on-road with type 1 diabetes.

Just today as I’m reading through the five or six articles, each a page to a few pages, the topics are as ever about things I want to know.

Sign up for your free newsletter here. This is a look at how it comes into your inbox and this week’s issue:

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We should be shocked by how much and why diabetes is in the news

I am happy that diabetes is in the news almost every day. We are getting more exposure and understanding from the general public. And I am sad it’s in the news every day because the reasons that is so are unforgivable.

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In the past few days I’ve read three articles that make me ill. Literally, they turn my stomach. The first was in the New York Post about a young man who died because he could no longer afford his insulin. When a doctor recommended a cheap, over-the-counter brand, he took it thinking the cost savings would also help his pay for his upcoming wedding, “Diabetic groom-to-be dies after taking cheaper insulin to pay for wedding.”  

When the never-to-be-groom’s body was found he had suffered multiple strokes, was in a diabetic coma and his blood sugar was 17 times what’s considered normal.

Then I read in the Washington Post, “A Detroit diabetic was deported to Iraq, where he’d never lived. He died from lack of insulin, family says.” Jimmy Aldaoud, who was born in Greece and lived in America his whole life was, under Trump’s ramp up to get rid of immigrants, rounded up by Detroit’s ICE, Immigration and Customs Enforcement, and deported to Iraq – a country of his heritage that he’d never been in.  He died for lack of insulin in Iraq.

I want to puke.

Then today I read on facebook an article a fellow T1D posted that CVS Pharmacy has decided they will not fulfill scripts for blood sugar testing strips beyond three a day. While this is a Medicare guideline, Medicare allows people with a written note from their doctor to get as many strips as their doctor prescribes. CVS has decided they will not. They say if you want more, go somewhere else.

I want to know what world I am living in. I want to know how safe I am, an average, educated, fairly healthy, fairly financially secure 65 year old woman  with type 1 diabetes? In my 47 years of living with diabetes I have never feared my condition would threaten my life – not in this way. To not be able to get the medication I need. And will my Dutch-Indonesian husband be rounded up one day walking to the grocery store and deported somewhere?

I can no longer say I am safe. I don’t recognize this country anymore. I don’t understand how people can do this to other human beings. And I feel a deep sense of dread.When articles like this come out every day I can only say do the best to keep yourself safe, we are all at risk.

Remedying blood sugar always trumps intermittent fasting and keto

 

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I was recently talking with a friend who was bemoaning the fact that she hates it when she has to break her nighttime or morning fast to treat a low blood sugar. So do I. And just these past two nights I’ve had to do it. I was around 78 mg/dl at 11 PM both Tuesday and Wednesday nights. I waited and watched my CGM til midnight, but no movement. Drat! I have to get up now and eat something, double drat!

Of course I hate it when I have to eat and I don’t want to. I’m not hungry and all I can see is the extra calories I wouldn’t eat if I didn’t have to raise my blood sugar.

Now that many of us are doing very low carb diets, keto or intermittent fasting, there’s even more chance your blood sugar may go low and you’ll have to remedy it with sugar.

I have to accept that’s diabetes and that’s just how it is. Getting blood sugar in a safe place, ESPECIALLY BEFORE GOING TO BED, ALWAYS TRUMPS maintaining your particular style of eating. We just have to not worry about those calories. They’re not much and if they’re worrisome you can eat a tiny bit less the next day.

Of course if this is a daily or nightly event for you, then it’s time to readjust what could be off. Did you take too much insulin? Did you exercise? Are you sick? Did your neighbors paint their house pink? You get it, there are so many variables at times you’ll have no idea.

But I think the reason I’ve been going too low at night this week is, even after 47 years with type 1 diabetes, I periodically, habitually forget that I am extremely sensitive to the action of insulin in the evening. So while it might take me 1 unit to cover a prune in the morning, it will take 1/2 unit at night or even less.

Then there’s also the, geez, how’d that happen? Tuesday night I treated my low with a prune which should have raised me 20 points. I ended up going up 60! Wednesday night I warmed 1/4 cup of almond milk and stirred in a teaspoon of honey. The results the next morning were a satisfying 95.  Suffice to say, you won’t always win this game either.

But that extra prune or peach or spoonful of honey or two glucose tabs is not going to turn you into a glutton or gorilla or put on 20 pounds. And you can always eat a wee bit less the next day. But not waking up in the morning, now that’s something I’m never, and you should never, be willing to risk, as best you can.

 

New nasal glucagon spray approved by FDA

 

 

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Baqsimi, (yes, where do they get these names from?) has just gotten FDA approval and that’s great news. Great news. Now, for the first time ever, there will be a fairly easy solution for a severe low.

 

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Baqsimi is glucagon in nasal powder form, delivered in a puff through a nasal spray bottle. No difficulty mixing up dry and wet ingredients like today’s glucagon, much reduced nervousness from the person who is going to spray this in your nose as opposed to stick a needle in your body.

It’s supposed to be on the market in retail pharmacies in a month. Eligible commercially insured people with diabetes can pay as little as $25 for up to two BAQSIMI devices (1 two-pack or 2 one-packs) if you use the savings card. That’s all I know about the pricing. I don’t know if Medicare will cover it but I do intend to find out. And I don’t know if it only has a one year shelf life. If anyone does know, please do tell.

Baqsimi is being brought to market by Eli Lilly after acquiring Locemia, the small start up that began work on the product four years ago. At the time I was helping with the copy and branding. So I am personally delighted to see this product green lighted.

For more information.