A type 1 diabetes podcast to keep you company

I’ve been remiss at posting lately. I’ll blame it on my general horror and utter fatigue with what’s happening in this country, and the world. The West Coast is on fire, the White House is too, and it’s hard to keep truckin’ at times and not let it affect me. But, prevail we must.

On my walk today I listened to my friend, Valerie, who was interviewed by a lovely UK gentleman, Daniel Newman. Daniel launched The Talking Type 1 Podcast over the past several months and you can tune in for roughly a 40 minute discussion between him and his T1D guest. Daniel also has T1D and a lovely British accent.

Hearing his conversation with Valerie this morning, walking along my local park (thank goodness for the greenery) to my local library, was not only educational but soothing. Valerie and Daniel both exude calm. I learned more about Valerie’s ups and downs with her diabetes against the backdrop of an eating disorder she’s since moved past, what she’s learned and even a dip into health equity and social justice issues, her passion and work.

If you’re looking for people’s stories with type 1 diabetes, like to learn something whie you’re traveling or want to take a break from current events, have a listen. It will make your own journey with diabetes a little bit less bedeviled.

Spoiler alert: Valerie recommended Daniel also feature me on his podcast. That will likely be made available in the next few weeks and when it is I’ll post it here.

Meet Ava Ann, the bunny with type 1 diabetes and chutzpah

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Imagine you’re 13 years old and you have Lyme disease. It’s so bad you spend five weeks in the hospital – and can’t sit up or lie down. Then you spend three years bedridden and in a special wheelchair at home and miss out on school.

Yet somehow your spirit hardly wanes and your resolve to help others increases. So while at college, sick again for a year, you teach yourself to crochet and crochet a line of stuffed animals – that you sell on Etsy – each one of which has a disability.

As Rachel Leland, our young woman with Lyme disease and author of Ava Ann Makes Art: The Story of a Rabbitt With Diabetes, says, “So every kid can have an animal who looks like them.”

So why did Rachel, whose Lyme disease recurs when some small health issue brings it on, create a book about a character with type 1 diabetes? One of Rachel’s closest friends’ siblings both have T1D and that inspired her. It seems also Ava’s cuteness and pretty purple dress, made her both the best selling animal in her line and one of her favorites.

In the book, Ava Ann’s teacher asks her pupils to create an art project about their life. This is the premise for the unfolding of finding your strength living with T1D.

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If you have a child with diabetes, around six to twelve years old, this is a simple, beautiful and profoundly strengthening way for them to see a brighter side of themself and their life with T1D.

When I told Rachel that I thought she has great resilience to have come through what she has, she told me, “Resiliently Rachel” is the name she likes to use online. It reminds her of how grateful she is for all her blessings, including her Lyme disease. I suspect Ava Ann has Rachel’s heart too, as the strength Ava Ann finds in herself is persistence.

Ava Ann Makes Art is available on Amazon in Kindle and paperback.

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Note: Pictures used with permission from the author

 

 

A day without basal insulin is like a day without sunshine – or how I missed my shot and what happened

It’s just not pleasant, no, not at all, when your day is going to be one fretful, fearful mess from the moment you wake up to and through your unconscious sleeping hours. And you know it.

As I moved my Tresiba pen away from my thigh yesterday morning, where I thought I had just injected, I noticed the pen needle was bent – at a 90-degree angle. That’s completely sideways if you are math-challenged like me.

The next sensation, after my subdued panic, was wetness. I felt liquid on my thigh, of course where the insulin should have entered my leg – now it slid down it. And I saw a few droplets shining around the bent pen needle.

Did I get any of my daily six units of Tresiba? Or did they all slide down my leg? Did the pen needle bend before it ever entered my body, or while it was inside my leg or as I was withdrawing it somehow? I had no idea but somehow I just couldn’t imagine the needle bending inside me or after withdrawing it. (In full disclosure, I had used this needle before. It is a NovoFine Plus, and it is thin. Still, this had never happened to me before.)

What to do? Well, first I had to make some kind of assumption to work off of. So I assumed I hadn’t gotten any of my dose, or if any, a treacly unit or two. So I immediately used a syringe to withdraw two units from my Tresiba pen and inject them into my leg. After a few choice expletives of course. That’s a third of my dose, but it’s something. At the worst, I now had 8 units of Tresiba onboard, which seemed highly unlikely. Or the other worst, I only had two units onboard.

My fear of course was Diabetic Ketoacidosis (DKA). I’ve never had DKA so it was all a mystery to me – how would it come, how quickly, when? I told the husband to be prepared in case he had to get me to the hospital.

Okay, battle forces ready, I contacted my inner circle of expert friends. It was 9:30 AM now and while taking my daily hour walk I texted my CDE (now DCES, Diabetes Care and Education Specialist) friend. I explained what had happened. She sounded almost as nervous as me as she wasn’t sure how to advise me on this. But she asked questions and said she’d call me back. She did indeed and we agreed the smartest thing to do was monitor my blood sugar throughout the day and use my mealtime insulin if I needed to kick back any high blood sugar. Two hours later she called me back again and said I could take my next day’s dose of Tresiba at 3 AM. I bargained for midnight.

Two other DCES friends, my endo and an MD friend, who has T1D, were part of my experts. As you can tell, I like a village when I mess up to lift me out of the muck. All interestingly had slightly different opinions. One thought like me that I hadn’t gotten any of my dose from the bent needle and could take 4 units that morning. Another said, maybe take 1 unit of Tresiba before bed because I am highly insulin sensitive, and my endo said depending on where you are after 30-36 hours of the dose you know you got, yesterday’s dose, take 4 units before bed and less the next morning. He also said there were a number of ways to handle this. Amen.

That is what became strikingly apparent to me during all this. There was no one right way to manage the situation. This speaks to the complexity of managing blood sugar, not the cliche of “control” everyone tries to sell you. There were too many unknown variables: there was an unpredictable accident, a bent needle that left me not knowing if, or how much, insulin my body had gotten. How long would Tresiba, which “works up to 42 hours” last in my body? When would my blood sugar start to rise? How much? How fast? In addition of course, to the zillion other variables that affect blood sugar. Forcing myself to stay up till almost midnight, my blood sugar was indeed beginning to rise while I was going in the opposite direction – nodding off in front of my computer.

Conclusion: Luckily, I did just fine and I did it on the shoulders of my brain trust, along with my smarts. As my DCES friend said to me, “You’re smart, you know your body, watch it, use your CGM, keep me posted.” The first time my blood sugar rose was actually only three hours after the event. At 11 AM it was 180 mg/dL! I freaked. Really, can the Tresiba I injected yesterday already not be working? I’d only had a cup of coffee. But as my other DCES friend emailed me, “Most likely that’s your stress response.” And of course, he was right.

Otherwise, my blood sugar stayed mostly level all day and didn’t start to tick upward till just before I went to bed. One last fear, and the biggest one – what would happen overnight knowing I might not have any insulin onboard –  I took one unit of Tresiba to at least add to the two units I’d taken that morning. I also took a half unit of my mealtime insulin to blunt the rise.

I left the husband a note in the bathroom, hanging off the vanity so he couldn’t help but see it. He tends to wake at 3 or 4 in the morning. Please check my Dexcom and wake me if I’m over or rising toward 180. But actually, I woke up – at 2:45 AM – and checked: 85mg/dL. That’s great, but since I knew I’d drop a bit more, which is my pattern, I took a teaspoon of honey, took the note off the vanity, and went back to bed.

This morning, a lovely 114 mg/dL.

Crisis over – that is of course until the next time: that’s type 1 diabetes. Thank you all on my brain trust, and here’s to my fellow PWDs who go through stuff like this every day of every week.

Last night from 9 PM to 7 AM when I woke. My compression low at 3 AM was from lying on my sensor. I know specifically because after I got back into bed I lay on that side where it sits on my arm.

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For me, summer and diabetes don’t mix

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Cartoon by the fabulously talented Haidee Soule Merritt

This is a precautionary tale. Don’t forget, as I did, that the summer heat and humidity can affect your skin, your body temp, your insulin viability, your sanity. For some summer pointers, click here, “How to deal with heat and diabetes.”

For the past two days my blood sugar has been higher than usual. Yesterday, when it went up to 180 mg/dL around 10 am, after waking at 105 mg/dL, and not having anything to eat, only a cup of coffee with cream, I froze. What the f#@k! Granted, my blood sugar rises 20-30 points regardless of no food when I wake from the Dawn Effect, but 75 points was just not right.

My mind began the tedious backtracking. Was my mealtime Humalog bad? Hmmm..maybe, it looks a little cloudy. Was my long-acting Tresiba bad? Maybe, I couldn’t remember when I started it. Were either, or both, spoiled from my hot apartment? Granted the air conditioner is on by the afternoon, but not in the morning or overnight. How hot was it anyway in the kitchen where I keep my Tresiba in a cup on the counter? The Humalog I keep in the fridge.

Quickly I asked the husband if we had a thermometer and if so to bring it into the kitchen. Of course he did. The temperature was 26 degrees. Well, what do you expect when you live with a Dutchman? 26 Celsius. Now I had to go look that up. That’s 77F. Then I had to look up the threshold for temperature and 86F is the magic number, 30 degrees Celcius, before insulin presumably goes bad.

Frankly, I had no idea what caused the rise in my blood sugar that lasted just about til 6 PM, regardless of the fact that I kept taking half units of my mealtime insulin to nudge the number down. It barely budged. Until of course it came crashing down to 70 mg/dL mid-afternoon with my Dexcom arrow pointing downward still. I swallowed three glucose tablets. My blood sugar raced up to 132 mg/dL and then seemed to leave me at 122 mg/dL and stay relatively steady for the rest of the night.

Still, I stayed up past midnight just to make sure my scariest theory – that I had no Tresiba onboard – was untrue and I wouldn’t find my blood sugar climbing to a DKA number. It didn’t.

This morning I woke up with two revelations. The one on my Dexcom was a happy 82 mg/dL. The other was given the heat wave, I haven’t done my daily hour exercise walk for the past several days. I know this daily exercise keeps me more insulin sensitive. So, was that the reason all along? Maybe my insulins are fine, my body is not dehydrated, I just wasn’t insulin-sensitive with the lack of exercise?

I can’t know for sure, but for now I’m going with this theory. While I’m writing this I’m at a pleasant 106 mg/dL so I’m inclined to think it’s a good hypothesis.

All to say, don’t forget the summer heat can play havoc with you and your insulin. This was in my inbox this morning from Hedia, a Danish diabetes app. With its oddly appropriate timing, I thought I’d share – “How to deal with heat and diabetes.”

 

August’s diabetes camp goes virtual for kids, adults and families

10% discount off registration fee – Cost is $295 for individual, $395 for the family before discount.

I never had the opportunity to go to diabetes camp since I got type 1 at the age of 18. But I always wish I had. When I started interviewing people with diabetes years ago, young people said to me it was one of the best things that ever happened to them. They made some of their best and expected to be lifelong, friends there.

So if you’re looking for a d-camp for your child this summer, or you want to attend as an adult with T1D or a family, look to ‘V Camp’ offered by the Diabetes Training Camp Foundation. And if you indicate you read about it here, you’ll get a 10% discount off the registration fee!

V Camp runs from Thursday evening, August 13th to Sunday afternoon, the 16th. Each day offers online back to back lectures, small group sessions and fitness opportunities. You can attend whatever you like and every single session.

There will be a program specifically for teens and parents on topics such as sex, drugs, transitioning from home to college, communication and more, and here’s the schedule that was sent to me:

Thursday

6:00 – 9:00 pm
Welcome & Introductions, V Camp Orientation

9:00 – 10:00 pm
DTC Virtual Hub

Friday

9:00 – 10:30 am
DTC Virtual Fitness & Training: walk, run or bike on your own or join our fitness class

10:30 – 12:00 pm
DTC Intro & Core Principles: Dr. Matt Corcoran

12:00 – 1:00 pm
DTC Nutrition: Dine & Learn: DTC Nutrition Team

1:00 – 2:30 pm
DTC Special Guest Lecture: Dr. Michael C. Riddell, York University

2:30 – 4:00 pm
DTC Mental Skills Workshop: Carrie Cheadle

4:00 – 5:30 pm
DTC Virtual Fitness & Training: Fitness Challenge

5:30 – 7:00 pm
DTC Athlete’s Round Table: Special Guest Athletes with T1D

7:00 – 8:30 pm
DTC Medical Lectures: Dr. Matt Corcoran, Dr Kimber Simmons

8:30 – 9:30 pm
DTC Virtual Hub

Saturday

9:00 – 10:30 am
DTC Virtual Fitness & Training: walk, run or bike on your own or join our fitness class

10:30 – 12:00 pm
DTC Medical Lectures: Kimber Simmons, MD

12:00 – 1:00 pm
DTC Coaching Roundtable

1:00 – 2:30 pm
DTC Special Guest Lecture: Dr. Bill Polonsky, Behavioral Diabetes Institute & UCSD

2:30 – 4:00 pm
DTC Guest Athlete Presentation: Special Guest Athlete with T1D

4:00 – 5:30 pm
DTC Virtual Fitness & Training: walk, run or bike on your own or join our fitness class

5:30 – 7 pm
DTC Nutrition Lectures: DTC Nutrition Team

7:00 – 8:30 pm
DTC Exercise Physiology Lecture: Robert Powell, PhD

8:30 – 10:00 pm
DTC Virtual Hub: Life on the front lines with T1D

Sunday

9:00 – 10:30 am
DTC Virtual Fitness & Training: walk, run or bike on your own or join our fitness class

10:30 – 12:00 pm
DTC Medical Lectures: Matthew Corcoran, MD, TBD

12:00 – 1:00 pm
DTC Nutrition Dine & Learn

1:00 – 2:30 pm
DTC Athletes’ Round Table: Special Guest Athletes with T1D

2:30 – 4:00 pm
DTC Mental Skills Workshop: Carrie Cheadle

4:00 – 5:30 pm
DTC Virtual Fitness & Training: walk, run or bike on your own or join our fitness class

5:30 – 7:00 pm
Camp Wrap Up and Closure – Our Virtual Circle

Guest speakers include

 

Latest news about Diabetes and COVID-19

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In the past six weeks I’ve been consulting with a group of global diabetes experts. As a team they are assessing COVID-19’s impact on people with diabetes and how we can keep ourselves safer. I’ve published two articles as a result of this collaboration.

Published on Diabetes Daily, UK Study Under Review Finds People With Type 1 Diabetes More at Risk to Die of COVID-19 Than People With Type 2 Diabetes is an important finding that’s being studied –  once people with type 1 diabetes are hospitalized for COVID-19, they fare worse than people with type 2 who are hospitalized with it. The reason is thought to be that those with type 1 have more vascular damage after years of fluctuating blood sugars.

  “NHS (United Kingdom National Health Service) research reports that people with type 1 diabetes are at 3.5x higher risk for death if they get COVID-19 than people without diabetes. In contrast, people with type 2 diabetes are twice as likely to die as people without diabetes.”

The second article published at diaTribe, Adapting Diabetes Prevention And Treatment Guidelines During COVID-19 And Designing A New Model of Care is a summary of the group’s findings and recommendations to date.

1. The best prevention against COVID-19, outside of the general recommendation of social distancing and washing your hands, is to keep oneself nutritionally and metabolically healthy.”

Both will help inform you how to move through this difficult time.

Let’s all stay safe: wear a mask, physically distance, wash your hands and keep your blood sugar in range as best you can. That advice we’ve been given since day one has never been more important.

Jamie Kurtzig, one amazing 16-year-old with T1D and a fire in her belly

 

Screen Shot 2020-07-13 at 3.09.02 PM.pngOne hour ago I received an email through my contact link from Jamie. Jamie is sixteen years old. She got T1D at the age of one and she has already been a speaker for JDRF’s Hope Gala, advocated for diabetes research funding and insulin affordability with members of Congress, writes a blog, worked with Kelly Close of Close Concerns, helped bring the first artificial pancreas clinical trial to India – and published a book of poems  – Onederland – about T1D, “sunsets and worn-out shoes,” as she says. I already feel very old and very unaccomplished.

Jamie is donating the book’s profits to diabetes nonprofits like JDRF, diaTribe and Beyond Type 1.

With a purchase of Jamie’s book you can help fund some of our favorite diabetes organizations, especially during this time when fundraising is harder than ever.

A smart, interactive timeline telling the story of diabetes

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DiabetesDaily has created a super-smart and interactive timeline of the history of diabetes including each innovation. Click on anything and you’ll be more informed about the event.

I often share when interviewed that having diabetes as long as 48 years allows me historical gratitude. If I’d only gotten it a few years ago I might not know what it was like decades ago, a time I often call the dark ages. Know you can.

Imagine, or maybe you’ve had it long enough to know, people had to boil and sharpen syringes. Nobody had a glucose meter before 1982 let alone a CGM. Insulins were far trickier to time with your blood sugar; you really needed to snack at odd times because they peaked at odd times.

So while you’re discovering glucagon first came out in 1061 as I did, just think how lucky you are that so much has improved for us taking care of our diabetes today.

FreeStyle Libre iCGM v2 offers greater accuracy and alarms – to adults & kids

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Here’s what’s new in the second generation of the Libre flash glucose monitor

From Abbott’s press release
ABBOTT’S FREESTYLE® LIBRE 2 ICGM CLEARED IN U.S. FOR ADULTS AND CHILDREN WITH DIABETES, ACHIEVING HIGHEST LEVEL OF ACCURACY AND PERFORMANCE STANDARDS
– FreeStyle Libre 2 is the only integrated continuous glucose monitoring (iCGM) system available that continuously transmits glucose data every minute with customizable, optional real-time alarms to alert users when their glucose is high or low without scanning
– Now for children (ages 4 and older) and adults with diabetes, this latest technology is the first and only iCGM that sustains performance for up to 14 days, providing trends, insights and actionable data
– FreeStyle Libre 2 system includes a self-applied sensor (the size of two-stacked quarters) that is easiest glucose sensor to apply and worn on the back of the upper arm, eliminating the need for painful fingersticks to test glucose levels
– FreeStyle Libre portfolio has been extensively studied with the most real-world users, delivering proven health outcomes
– FreeStyle Libre 2 system offers enhanced features at the same affordable price as FreeStyle Libre 14 day system, which is a third of the cost of other CGMs
Full press release here

COVID-19 may cause worse outcomes in people with type 1 than type 2 diabetes

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I was first alerted to this in an article I saw in the British paper, The Guardian. I brought my concern to the group of global diabetologists I’m working with who are examining how COVID-19 is affecting people with diabetes.

Our British member, PhD Philip Home, responded to me immediately and walked me through the research. The reason type 1s may have worse outcomes if they get coronavirus than type 2s, in a nutshell, is vascular damage.

The story broke today on DiabetesDaily. Here’s the story.