It’s difficult to disbelieve an entrenched idea, like that we can control our blood sugar. We can’t.

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I wonder if there’s any synchronicity between Facebook crashing today and so the article I have pushed tirelessly to get published, which did get published today, I couldn’t even link on Facebook. Ah, man plans and God laughs.

The article was published on diaTribe – “Why ‘Controlling’ Blood Sugar Shouldn’t Be the Goal.” I’m indebted diaTribe. A variation of this article was published in Diabetes Sisters’ newsletter in December, “The Myth of Controlling Blood Sugar, And a Better Way to Manage It.” I thank Diabetes Sisters too.

That said, there’s a back story worth noting I think. It took more than four months, pitching to three organizations, push back, rejection, and numerous rewrites before these two articles were published. That’s not anyone trying to give me a hard time; that’s the power of an idea that is so entrenched, even though it is not true.

You see the sentry that stand over this myth believe that if we tell people with diabetes the truth – that we can’t control our blood sugar – that we will set our hair on fire. That we will be so dismal, disappointed and depressed, so frustrated and disempowered, that we will give up entirely on our management, and ourselves.

What I know is that when we tell people the truth, they feel validated, un-wronged and seen. They feel more powerful. Every time I tell someone that they can’t control their blood sugar, that they are responsible for their effort but not entirely responsible for the outcome, they practically cry in my arms from relief.

We’ve heard “control” and “blood sugar” in the same breath for so long so often, it’s so obsequious in the language of diabetes, that no one thinks to question it. I questioned it and I’m telling you, outright, it’s not true, and its falsity is supported by science, particularly neurobiology and complexity science.

Read the article and share it. I hope it takes you off the hook too many people, with all good intentions, have hoisted us upon.

I plan to prove one can have a long life with diabetes

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All I know is when I was diagnosed in February 1972 I was told, “There’ll be a cure in five years.” I know, you were told that too. And, “Your lifespan will be fifteen years shorter than average.”

Well, this week marks my 52nd ‘diaversary.’ The medal from Joslin, above, I received two years ago when I crossed the 50 year threshold. Due to Covid I didn’t get to go to Boston and attend any kind of ceremony. Still, it’s nice to look at.

As to the second prediction, recent studies show that people with type 1 diabetes, who take good care of themselves, tend to live longer than the average American. I’m assuming that average American is eating a relatively poor diet of processed foods and not physically active.

In some ways the more years you live with type 1 the easier it gets. You know your patterns better, you get used to doing certain things like ordering medicine and supplies, and if you’re lucky, you have a few friends, or just one, with diabetes. At the same time, it gets harder. More tiresome, maybe some complications have come and there are a pile-up of endless, countless days you wonder, “How did that happen?!”

Still, at an age when I’ve already lost friends to other conditions, I’m grateful I’m still here.

The wisdom of living 52 years with type 1 diabetes in a nutshell: Each day is a new day.

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In two days, February 22, I’ll be “celebrating,” well acknowledging, 52 years with type 1 diabetes (T1D). Since I got it at 18, I have lived with T1D much longer than not. In reality, I have no memory of what it’s like to live without eye-balling carbs, checking my CGM, thinking ahead what and when I’ll be eating, will I be walking, oops that was stupid, etc, etc, etc.

If you think I have tons of wisdom to offer having lived 52 years with this, maybe I do. It would probably pour out of me if we were having a conversation. But since this is a one-sided conversation, here are my nuggets. Yes, they’re purposefully spare because it’s easier to remember a few things than memorize a living encyclopedia:

  1. Use a CGM if you can. If not, check your blood sugar before and two hours after meals and activity. Look for patterns to know better how to dose.
  2. Don’t beat yourself up for your numbers. Few will tell you this truth: You can’t “control” blood sugar. The body’s biological functions are not within your control, and life is unpredictable. You are responsible for your effort, but not your outcome.
  3. Make diabetes friends. No one else will “get it” the way they will, and those friends will put a little self-love back into your heart.
  4. Acknowledge T1D is tough, constant work. You don’t get any days off. In fact, you don’t make any progress, you just work hard not to digress too far. Not a pleasant thought, but the first time I heard it it rang so true. Given that truth, do the work and go easy on yourself. Celebrate the wins and see yourself in a constant experiment mode.

Yes, you thought there’d be five points, but those are the four that strike me this Tuesday afternoon. And here’s my ‘one thing I know for sure.’ When I change my routine, even after 52 years, it’s like I know nothing. Eating and exercising similarly day to day is definitely my special sauce. Case in point:

Routine

Whereas my recent trip to Costa Rica where my eating and exercise, being different and unpredictable, challenged all my “best” decisions

Closing thought, no matter where you are on this road, you’re still here. That’s a testament to all you’ve done.

A new model for diabetes camp in Costa Rica – emotions take center stage.

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Above me and four of the six or seven doctors who worked at camp

The husband and I just returned from 12 days in Costa Rica. The first days were spent at our friend Daniela Rojas’ diabetes camp outside of San Jose. Daniela has run the camp for 12 years and many of the kids come back year after year. They love the camp.

Over the past few years Daniela has accentuated helping kids deal with the emotions of living with type 1 diabetes amid playing games, athletic activities and management education. She began this well-being focus four years ago using my first book, “The ABCs of Loving Yourself With Diabetes.” We actually produced a Spanish version of the book when we published it.

The kids in like-aged groups would chose one of the inspirational essays in the book to read and then discuss the feelings that it brought up for them. For example fear for their future; would anyone love them and marry them; guilt over being a burden to their parents. To my knowledge no other diabetes camp puts such emphasis on the well-being and mental health of campers, nor gives them such creative ways to share. Here’s a short video that was shot at camp that features me and the husband.

We’ve been invited these past four years to camp, but each year something got in the way. Thankfully, this year nothing did. As part of my contribution I shared my story of living almost 52 years with T1D. A hush fell over the 60 campers when I talked about a previous boyfriend who was completely oblivious to my need to treat a low blood sugar. He went back to bed while I searched in his darkened flat in London, where I had just arrived that day, for sugar. A few tween girls dissolved into tears at various times during my talk, as their feelings of shame and fear arose. The husband and I talked with them afterward and the next day they were all smiles again.

The husband led the campers, group leaders, and doctors, in somatic exercises that calm the nervous system. In truth, living with T1D we are always in a state of hypervigilance watching our blood sugar rise and fall, on the lookout for a crash and making dozens of management decisions a day. It was remarkable to see nine year olds embrace the exercises; in essence embracing themselves. And together we spoke to 20 parents of newly diagnosed kids and helped them see that their kids do indeed have a future. Some of the parents had driven nine hours from Nicaragua as this was the closest diabetes camp.

Amid all the activities, watching the kids throw themselves into playing ‘Master Chef’, above, as the sun was setting outside the camp house was beyond delightful. And I appreciate Abbott for supplying Freestyle Libre sensors to all the kids. For most it was their first experience wearing a CGM. Of course one only lasts 14 days, but still…

Needless to say camp, only 2.5 days, was a rich, rewarding experience. I had never attended a diabetes camp with kids before. If you’re wondering, what the husband and I did was translated into English. Being around the campers required no translation. Camps in the US could certainly benefit from creating a safe space for kids to bond emotionally over the feelings we all harbor living with this condition.

A footnote: We spent our second week in Costa Rica up in the Cloud Forest of Monteverde. How fortunate that my next door neighbor in my apartment building here moved there 15 years ago. It was all a beautiful experience.

Below, walking over a hanging bridge in the Cloud Forest of Monteverde, Costa Rica.

CDE Carolyn Robertson virtually educating type 1s for free

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I heard about Carolyn Robertson many years ago (and that is why I still use the acronym CDE). She was everyone’s favorite CDE in New York City. I never met her at the time as she moved West shortly thereafter.

But she’s been giving free webinars just to help keep all of us on the ball. Last night she gave one specifically for people on multiple daily injections, as opposed to a pump. As her seminars do, this one lasted two hours. She presented great information, we asked questions, shared and I picked up a few tips and reminders, even after 51 years of type 1 diabetes.

Here is what was meaningful for me:

While we want our blood sugar in range, we particularly want to avoid spikes. Spikes in both directions create extra inflammation. So if your blood sugar is too high, for instance, better to bring it down gradually than too fast.

As syringe and pen needles have gotten so short, 4 mm, make sure you inject at a right angle. If your needle goes in at a 45 degree angle for instance, there’s a chance it will not go in deep enough to reach the layer of skin that’s best for taking the insulin where it needs to go.

As I wrote in my last post, if you have a dramatic rise in your blood sugar in the early hours, the Dawn Effect, there’s no harm trying Metformin to see if that helps minimize the glucose the liver pumps out at that time of day. Since Metformin is a GLP 1, it also can cause gastric distress and nausea, so start with a low dose and build up slowly.

If you accidentally double your basal insulin you might need to get to a hospital where they can put you on an IV drip of glucose. This really depends on how much insulin you took.

Carolyn left us with the good news that while we don’t see it, companies are continuously innovating. Pump and Pharma companies are trying to come up with better devices and smarter, faster insulins.

If you want to receive Carolyn’s newsletter, Strong on Insulin Group, go here. You’ll hear about updates and when she’s giving one of her quarterly webinars.

Ginger Vieira’s new YouTube Channel, DiabetesNerd

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I’ve known Ginger for as long as I’ve been in the diabetes space, and I implicitly trust her knowledge and experience. Diagnosed with type 1 at 13, she has more than 20 years of both, and has just launched a YouTube channel, DiabetesNerd. As her tagline goes she’s making the science simple for us. But don’t let the word “science” scare you. You’ll feel more like you’ve got a cheerleader in your corner who explains things well.

Ginger’s already uploaded about seven videos, from five to twelve minutes each on various topics. As much as I know, I found two immediately gave me new insights, one on Metformin for type 1s, as she uses it to dampen the Dawn Effect and Afrezza, inhaled insulin, which I considered long ago but maybe it’s time to consider again.

Ginger’s written hundreds of articles, several books, worked for a number of diabetes orgs and social media sites, has experimented on herself for two decades, is a champion power lifter and delivered two lovely healthy little girls. Take a look, I’m convinced we all need a diabetes nerd in our corner.

A frank discussion about diabetes stigma

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I have known the lovely Scott Johnson (above) almost since the day I entered the diabetes space. He was one of my early supporters and beyond welcoming. I recently had the pleasure to reconnect with him for a video blog he was producing on diabetes stigma.

One call out from our discussion is the Pledge to end diabetes stigma, which you can take and share.

Here’s the talk below on deconstructing diabetes stigma featuring Renza Scibilia, Mari Ruddy, Scott, myself and Dennis Goldensohn. Afterward, take a look at some of the other video blogs Scott has done. Several get into the emotional aspects of living with this condition, as he interviews BDI’s (Behavioral Diabetes Institute) psychologists Drs Bill Polonsky and Susan Guzman.

Deconstructing diabetes stigma: A panel discussion

An every day mindset for living with type 1 diabetes

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I had the pleasure to record a video the other day with one of my favorite diabetes advocates, which I will lead you to once it’s posted, and he posted this article of an interview with me, “Recognizing what you need: The art of flourishing with diabetes.” It appeared on Beyond Type 1’s website three years ago, but just re-reading it now, it’s just as true as ever.

Thought you might enjoy it. Sets a nice tone for entering the new year.

A Christmas Gift from me to you: You Can’t Control Blood Sugar

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I’ve been saying this for quite a while, now I’m writing about it: You cannot control blood sugar or diabetes. Yes, you can manage it, influence it, navigate it, wrangle with it, bolus rage it, but you cannot “control” it. You cannot do x, y and z and get the precise number you want. There are a multitude of interacting factors why. If you’ve had diabetes long enough for the shock to wear off, I will go out on a limb and say you agree, as everyone does once I explain this. Surely you’d think after having type 1 for 51 years I’d know every trick to control it – geez, hasn’t happened yet.

So here’s my Christmas present to you – you’ll learn why you can’t control it and what to do instead : “The Myth of Controlling Blood Sugar, And a Better Way to Manage It.” It’s in DiabetesSisters’ newsletter this month.

It’s truly amazing that this falsehood has been told to us for decades, by our health professionals, the media, and now device companies. Is it wishful thinking? Our love of speaking in sound bites? Medical training for acute conditions that fails miserably for chronic conditions.

Whatever it is that causes us to repeat this myth, without scientific or anecdotal evidence, or much thought at all, causes people with diabetes to expect the impossible from themselves, and then feel bad, sad, frustrated, disappointed, angry, shamed, burned out you name it when they don’t ace it.

So steal away sometime today and have a read. The reward is immediate. And need I say, will be a gift that just keeps giving each and every day.