Ginger Vieira (above) is one of my favorite people. I’ve known her more than twenty years when we first rubbed shoulders at various ‘diabetes online community’ conferences. I loved her realness, honesty, boldness, wonder, openness. Author of several books and now hosting her own podcast and videos at Diabetes Nerd, she uses her enviable tech skills to keep us type 1s informed and keep it real.
I saw her short video below pop up on my feed yesterday and laughed all the way through. I cannot tell you how refreshing it is to see a type 1 role model let you see just how undone we become- just like you – managing blood sugars on a daily basis. Hats off Ginger!
As I’ve said, likely every year, it’s nice to have a day dedicated to you, but it would be nicer if we didn’t need it.
In all my years with type 1 diabetes, 53 now, this is one of the pieces I’m most proud of writing. It was published while I was writing for the Huffington Post for seven years, “Type 1 Diabetes Finally Explained.”
It touched a lot of people and helped them explain to family and friends what it’s really like to live with this condition. Doesn’t matter that it was written eight years ago, a classic is a classic.
I’m going to ask you to take just a few minutes to fill out a short, simple survey if you agree with this headline.
The World Heart Federation (WHF) is portraying the patient/HCP relationship as “adherence to treatment.” In the diabetes community there’s been a movement for some years now, #language matters, to rid us of demeaning language, such as “adherence.” Adherence implies judgment, stigma, lack of context and that we bow down before the mighty health professional rather than engage in a partnership. The International Diabetes Federation is trying to persuade the WHF to drop the term, but they need our voices.
Please take just a few minutes to fill out this simple, short survey and let the WHF know we object to labeling us as adherent or non adherent, a clinical term by the way. https://lnkd.in/er5ndXFX…
Note: One question asks if you are YLD (a young leader in diabetes) or BCV (a Blue Circle Voice member). These are IDF groups. If you can, just skip the question. If you can’t, just tick BC
I’ve known Francine Kaufman for nearly three decades, she’s a force in the diabetes world: currently on the executive leadership team of Senseonics, the maker of Eversense, the implanted CGM you can now wear for a year. Past Chief Medical Officer at Medtronics, past President of the ADA, distinguished pediatric endocrinologist at Children’s Hospital, LA, leader of diabetes missions to Haiti, writer of books, including Diabesity, and scientific articles, maker of Extend Bar, and my friend. Truly, she has too many credits to list; I am in awe of her and grateful for all she’s done.
Fran’s leading a one hour webinar for DiabetesSisters this World Diabetes Day – November 14th, 12 noon EDT. She will share real-life tools and strategies for women managing diabetes,motherhood and life. And her professional and personal wisdom and care will be on display, as always. Consider it your World Diabetes Day gift. I’ll be there. Register here.
Dan reached out to me a few months ago. As a fellow type 1 writing on substack from an interesting, often sideways and illuminating perspective, we had a zoom call and got acquainted. I’m very grateful he’s writing in the type 1 diabetes space.
His latest post, “Dexcom’s Tumble and the Ill-fated G7 Sensor” is about how Dexcom’s G7 largely failed. There’s a face group of disgruntled users over 58,000 strong. I said so after first using the G7 and switched to Libre 3,(now Libre 3 plus), which I’m very happy with.
Head over to Dan’s substack and see if you don’t come away illuminated too.
I’ve often been asked why I don’t wear a pump. I do MDI (multiple daily injections), always have. I’m usually asked the pump question by a pump user, who of course extols the benefits of using a pump. And I am sure there are many and it is a wonderful device for many.
Sometimes my pump wearer then tells me they also take pump vacations. It is what it sounds like it is. They take a break from wearing their pump and do injections instead for a while. Wearing a pump, as most (all) devices, has its drawbacks as well as its virtues. In the case of a pump, although if you wear one you’ll know better than me, drawbacks include changing sites, occluded tubing or any other pump failure, carrying tons of supplies, where to wear it for the beach.
Yet, in all the years I’ve heard people talk about taking a pump vacation, I’d never heard, or thought about myself, taking a CGM vacation. Yes, I wear a CGM. Currently Libre 3 Plus. I’d never thought of taking a break until I had reason to do so a week ago.
How’s it going? Remarkably, actually. I’m back to checking my glucose on a meter about 7 days a day. Do I like the finger sticks? Nope, no more than before. But, I’m surprised (amazed) that when I do a check, my numbers are great (I avoid saying ‘good’ as numbers aren’t “good” or “bad”). They are nearly always in range and numbers I like: 83, 101, 98. Huh? How could it be?
I have to guess it’s because of two values I hold. The first is routine. I eat and exercise pretty similarly day to day so I’ve learned my patterns, how my blood sugar reacts. It’s pretty similar day to day. That was the second value by the way, learning my patterns. Which of course came from years of wearing a CGM.
I don’t know how long I’m going to wait before I start up my next sensor. I’m enjoying this vacation. If you’ve never done it, you might like to try. My mind no longer obsesses about my numbers (although it surely did the first day I was CGM-free). That means there’s more space up there and a certain carefreeness. I feel a little more ‘normal,’ and a little less like a person with diabetes. Trust me, I didn’t expect this. But, hey, interesting. (Caveat: I’m no doctor, you need to be comfortable with this decision).
I gave up my CGM last week because I’m experimenting with photobiomodulation (red light therapy). I was going to do a red light therapy treatment on a bed of lights called the Novothor and I didn’t want to risk that the sensor would be affected or shut off. Simple as that.
I’ll write more about photobiomodulation soon. It’s a healing modality that uses certain wavelengths of light with really no side effects. In the short run, it can help heal injuries, lower inflammation, aid blood flow and charge up mitochondria for more energy. In the long run, it may even help people with diabetes avoid what’s come to be called Type 3, brain conditions like dementia and Alzheimers. People with diabetes are at higher risk of such conditions due to the damaging effect of high and low blood sugars on the brain. More to come.
So just a suggestion – next time you feel overwhelmed by your diabetes you might want to take a CGM vacation. See how you feel and what happens.
That said, I know I’ll be putting my sensor on again fairly soon. It’s still an amazing tool and likely, in the long run, I trust it will keep me healthier than without it.
My friend with type 1, who’s had it over 30 years, emailed me this morning:
“I skipped Avra’s class (qigong) and went to the gym since I had a doctor’s appointment yesterday and missed the gym. But… I had changed my Dex G7 in the morning and it had me going high and my control IQ gave me insulin I didn’t want… so I went low during weights class, ate glucose and went high … repeat… went low again and then low during the yoga class I took after the weights class. UGH. Frustrating because this hasn’t happened before recently at the gym. Also, I put collagen powder in my coffee this morning and did not dose… so i think that is what made me high in the first place. DARN.”
My friend wears a pump and a CGM. She is diabetes-educated and experienced. She is a health coach and former peer leader. Even so, she went to Diabetesville.
You know it, you’ve been there. That place where all of a sudden you notice things aren’t going the way they should. Nothing you do seems to make sense. No correction you make seems to work… until…finally…all your efforts return you home from Diabetesville.
What caused the initial hiccup? Who knows? What contributed to the ensuing chaos? No clue can be confirmed. What can you learn from this? Nothing. Nothing more than it’s just another day in Diabetesville. Things don’t go according to plan and you don’t know why. You couldn’t have stopped it because you didn’t know it was happening until it was too late.
53 years with type 1 diabetes and the train still drops me off there. Once a week…once a month…Always when I least expect it. It has to be that way, of course. For me, it was just a week ago while visiting a friend in New Jersey.
Don’t worry, if there’s anything you missed seeing or doing while in Diabetesville, you’ll be back.
I think this is the highest blood sugar I’ve ever had, or at least since I could see my blood sugars. I sent this to a fellow type 1 friend in an email with the heading: ‘Don’t ask!?’ She wrote back: ‘I’m asking!!! Something you ate for breakfast?, sugar got in your coffee, bad news/stress…. Detectives at work!
Of course I’d already put on my detective hat and wrote back: ‘Could be any or all of those. I think the sensor was correct. I don’t know if my Fiasp (short acting) or Toujeo had spoiled as both were expired. Or, I didn’t cover breakfast correctly because I was at my friend’s house in NJ and she made oat muffins which I don’t ordinarily eat. Or maybe the heat tampered with my insulins or BS. Or I injected through scar tissue. Or…or…or…
Because when I realized how my insulin(s) wasn’t covering my breakfast, I was in the car with friends just starting out on our two hour drive from visiting a friend in New Jersey, back to Brooklyn. We made one stop before getting on the highway; we stopped at a supermarket. You know city girls just wanna walk up and down the aisles of a real supermarket. So while my friends shopped I walked up and down every aisle and around the property outside knowing exercise now was the only way to stop my blood sugar from rising and hopefully get it down.
And it did start to come down, from this high of 263 to 219, but then we got back in the car and it started going up again. By this point I’d likely taken 7 units of Fiasco in 1 or 1.5 unit shots and I was bouncing my feet up and down in the car to keep so blood sugar lowering motion going. Finally I chanced one more unit when I was 175 and half way home. Finally that knocked it down to 110 by time we crossed over to Brooklyn.
I dumped the Toujeo and started a new one this morning. I watched my blood sugar all evening and the next morning and all seemed fine.
So what did this detective and my friend come up with. We figured the most likely scenario was seriously undershooting for the oat muffin. But truly who knows?! As the song goes, ‘Mama said there’d be days like this, there’d be days like this mama said.’ Luckily we now have the tools, my CGM, to watch what’s happening in real time, and the knowledge to run small experiments like taking 1 unit and seeing what happens. Luckily too, while I was somewhat distressed not to be close to home and able to just grab a fresh bottle of insulin, I was grateful I wasn’t alone.
I’m not quite sure how I feel about this…probably shocked while giggling. Mattel has just launched its latest Barbie doll and she has type 1 diabetes — and very pink medical devices! Her showing up on planet Earth was the result of a collaboration between the toy company and Breakthrough T1D (formerly JDRF), much spearheading by Breakthrough CEO Aaron Kowalski.
Senior VP and head of dolls, Krista Berger says, “”Introducing a Barbie doll with type 1 diabetes marks an important step in our commitment to inclusivity and representation. Barbie helps shape children’s early perceptions of the world, and by reflecting medical conditions like [Type 1 diabetes], we ensure more kids can see themselves in the stories they imagine and the dolls they love.”
Sure, although she doesn’t have any bruising from cannula insertions and how’s she going to manage a day of up and down blood sugars with that constant smile. If it gives little girls comfort that’s fantastic, albeit the Barbie prototype — all legs and no waist — has always been concerning. However, diabetes-wise, the fact that a doll can’t be emotive makes me wonder if perennial optimism feels dismissive of the real frustration, disappointment, and anger when it comes.
Two other dolls of T1D advocates are also being launched. They represent Peloton fitness instructor Robin Arzon and model Lila Moss. Arzon says, “It’s an absolute honor to receive a Barbie doll as a part of the brand’s efforts to grow awareness and representation surrounding type 1 diabetes, so that we can help show kids that all types of challenges give us all the more reason to push forward and achieve our dreams.” Yes there’s a place for pushing forward and achieving your dreams, but Barbie depicts only that, frozen in happy, happy.
Maybe Moss has hit on what I’m really feeling, “To be able to now see Barbie dolls with [Type 1 diabetes], and to receive a Barbie doll that visibly looks like me even wearing her patches, is both surreal and special.” Amen.
The Barbie doll with Type 1 diabetes is available on Mattel Shop and stores across the country.
I had the pleasure of talking with my friend, former diabetes educator of the year, Gary Scheiner recently. Actually, Gary is responsible for getting me on a CGM all those many years ago. Gary hosts the podcast, Think Like a Pancreas. You can hear our interview here if you’re sitting behind the computer, or better yet watch here as above on YouTube, or listen wherever you get your podcasts.
In 30 minutes you’ll understand why you can’t control your blood sugar, but that you can influence it; that you’re responsible for your efforts, but not your outcomes; that you are a superhero, and you’re not (that’s the good news); that perfection is a sneaky form of control — and it will trip you up, and never to beat yourself up. It’s a waste of time, energy and all you do well.
Join us for a talk I believe will be enlightening, entertaining and worthwhile. If you’re inclined share it with a loved one, parent, spouse, grandparent. The more those who love you understand this life, the better it is for all of us.
Diabetes Stories 