The Platinum Rule asks clinicians to look at their values

(Forgive the stock photo above)

You may be familiar with what’s known in the diabetes and medical community as #languagematters. It began as a global advocacy movement and now has a lot of research and recommendations behind it. As you might imagine, it reminds health professionals that the language they use with people who have diabetes should not be judging and negative but realistic and supportive. That this affects outcomes.

Similarly, this morning I read in the Scientific American, “Beyond the Gold Rule: Clinicians need to understand patients’ values, not apply their own.” That what also makes a difference in how we tend to people is values. Physicians, largely, of course not all, tend to swim in the sea of their values mostly ignorant of their patients’.

As the author, science journalist Claudia Wallis, points out, “We have to acknowledge the ways in which our own personal biases can shape the way we perceive and respond to patients.”

Here’s a brief excerpt from the article:

“In the arena of medicine, the stakes for making or influencing choices for others can be especially high. Such choices impact people’s quality of life and even their chances of survival. As health care becomes less paternalistic and more individualized, the time seems right for a new ethical guideline. Enter the “platinum rule,” proposed by Harvey Max Chochinov, a professor of psychiatry at Canada’s University of Manitoba: do unto others as they would want done unto themselves.

Chochinov, an expert on palliative care, eloquently describes this principle in his essay “Seeing Ellen and the Platinum Rule,” published last year in JAMA Neurology. He begins with a story about a health crisis affecting his late sister Ellen, who was severely disabled by cerebral palsy…”

How refreshing it is to remind all of us that we all see the world according to our unique experiences, conditioning and values. The whole article is worth reading.

Medicare’s $35 cap on insulin now in effect

Starting this past January 1 if you are on Medicare insulin will cost you no more than $35 per script per month. For people with type 1 diabetes, like myself who are not on a pump, that’s more like $70 per month, as we use two different insulins a day, both a rapid and long-acting insulin.

You do not have to first meet a deductible and the cost is intended to be applied at point of sale, like when you buy your insulin at the pharmacy, but some Medicare Plan Ds (Pharma) will not have their payment systems updated until the end of March.

For more details, here’s an article in today’s Wall Street Journal, “How the New $35 Cap on Insulin Costs Will Work.

Increasing and decreasing insulin for steroid medication

Okay, so this headline may be misleading because what works for me may not work for you. Still, it may, and what I did coming off five days of prednisone for bronchitis and a sinus infection was based on what diabetes educator extraordinary, Gary Scheiner, advised me to do.

This picture is also misleading, but sitting here readying myself to write this, I had to play with my fountain pens first, because they give me so much joy. Above from left to right: Sailor, TWSBI, Sailor mini, Sailor Realo. I am a real Sailor fan, they make a nib like no other company.

Okay, back to the topic at hand. I found I had to double my daily Tresiba dose, for me that meant going from 7 to 14 units, to manage the high from prednisone, a steroid medication prescribed to reduce inflammation. Gary says you will need to double, sometimes triple, not your bolus, but your basal. Surprising, huh? But true.

That worked really well for the five days I was on prednisone. But then, how do I decrease my Tresiba back to my usual dose when the prednisone stops? I read that prednisone stays in your body for approximately 20 hours after you stop taking it, so the first day I didn’t take it, I took 12 units, dropping down slightly from my 14 thinking I was covering most of a day.

I noticed, however, late that evening that my blood sugar was dropping. Now, in truth, it could have been that I took too much insulin for my dinner, as I was eating a carb meal I don’t ordinarily eat, but I sensed it was the prednisone no longer raising my blood sugar.

I was nervous, as of course, these things always happen before you’re going to sleep. So, this is what I did. First I had a text exchange from 10:30-11:30 pm with a fellow type 1 friend whom I knew had recently double dosed her Tresiba. She shared her experience, the need to watch your blood sugar like a hawk and be prepared to eat 20 and 30 more grams of carb when you see yourself dipping.

So I raised my blood sugar to 120 mg/dl with honey before going to sleep to give me some cushion. Normally I like to be between 90-100 mg/dl. Then I ate half of an extend bar, which says it keep blood sugar stable for 9 hours. Then I put the baqsimi I’ve never used on my husband’s night table and told him he may have to use it. Then I watched on Netflix three episodes of Virgin River to keep myself up til 1:30 am so I could watch my blood sugar.

The next morning I was okay with a reading of 71 mg/dl, but I didn’t know, do I skip today’s Tresiba, since Tresiba stays in your body for 42 hours? That seemed sensible to me and my friend said her endo told her to skip her next day’s Tresiba. Or maybe should I split my normal dose and take about 3 units in the morning and 3 before bed…? So I reached out to Gary who said, take your normal 7 unit dose and just watch your blood sugar. You may need to eat more carbs or snack more. Really?

It seemed not to make sense, but of course I trust Gary’s knowledge, so I did just that and actually my blood sugars stayed stable all day. No noticeable drop or elevation. Amazing.

Again, YDMV (your diabetes may vary) and you should know by now that I am not any sort of medical professional, but these are basic guidelines that have a good chance of working for you.

Treating the highs and lows that come from steroid meds, is scary. I’m never comfortable having to do it, and I wish there were a better way, but there isn’t. So, wishing you an easy trip if you find yourself on this particular journey and some good advice from my friend Gary Scheiner, former educator of the year. Gary’s services are available at Integrated Diabetes Services, and he works remote.

She’s 92 years old with type 1 diabetes since the age of 11

I read this article this morning in the Washington Post, “Doctors said she’d be lucky to live until age 15. She’s now 92.” I love it; there isn’t enough good news around, but I have heard over the past few years, that those of us with type 1, if we take care of it, can live as long, or longer, than our non-diabetes humans. I too diagnosed in 1972 was told I’d have 15 years less to live, and I’m not counting on it.

My favorite part of this story is the picture above where we see Libby’s Dexcom, C’mon, a 92 year old woman who’s wearing a Dexcom and seeing the readings on her phone. You gotta love it. I loved the story enough to post a bit of it here.

Doctors said she’d be lucky to live until age 15. She’s now 92.

‘I’m quite happy and amazed to still be here,’ said Libby Lashansky, who was diagnosed with Type 1 diabetes when she was 11

Cathy FreeDecember 28, 2022 at 6:00 a.m. EST

Libby Lashansky, at home on Long Island in December, said she is believed to be one of the oldest people living with Type 1 diabetes. She was diagnosed at age 11. (Saul Brenner)

Libby Lashansky was 11 years old in 1941 when she was diagnosed with Type 1 diabetes and sent home from a hospital in South Africa with a blood-sugar monitoring kit that required her to boil her urine.

There is no cure for Type 1 diabetes, and doctors in her hometown of Johannesburg told Lashansky she probably wouldn’t live past age 15.

“It was upsetting to hear that, but I accepted it,” she said. “Year after year, I expected to die.”

Eight decades later, Lashansky, now 92 and a great-grandmother, has outlived the doctors who told her she would die young. She went to medical school, became a doctor, got married and had two children — milestones she was told she’d never achieve…

A recent study published in the Lancet medical journal found that in 2021 there were 8.4 million people in the world with Type 1 diabetes, and about 19 percent were 60 or older. Researchers who conducted the study also estimated that Type 1 cases could double worldwide by 2040.

Lashansky said she decided from the beginning that the best way to prolong her life was to carefully watch her diet but to also enjoy living…

Lashansky said she was told not to exercise, which is the opposite of what doctors tell diabetic patients today.

“I was told it would upset my sugar levels, but I didn’t want to be seen as different, so I did it anyway,” she said. “I played net ball (basketball), and I was the shooter so I wouldn’t have to run around as much…”

Monitoring her health is much more accurate today with a glucose monitoring system that attaches to her abdomen and gives readings every five minutes, she said, noting that she also uses an insulin pen because her doctor told her she is too old to use an insulin pump to automatically deliver insulin to her body…

When she married Benny Lashansky in 1957, she said she was told it would be too dangerous to her health to have children.

She ignored their advice and forged ahead…

Even doctors who haven’t treated her are stunned to learn that she has thrived for decades with a disease that once predicted an early death…As she approaches her mid-90s, though, she noted that old habits are hard to break.

“Two years ago, I had to buy a bottle of makeup and I automatically went for the smaller size, because I wondered if I would make it to the next year,” she said. “I’ve wondered that for years, and yet, here I am. Every day, I’m quite happy and amazed to still be here.”

For the full story and pictures, go here.

Lisbon IDF World Congress reception

Above some of the wonderful diabetes advocates who made the conference possible

I haven’t posted in three weeks as I recently spent 9 days in Lisbon, part of those attending the International Diabetes Federation World Congress and then 9 days in London in bitter cold temps, rain and trains, nurses and Heathrow baggage handlers on strike.

It was the first trip out of the country the husband and I have taken, and we both contracted major colds. Mine continues to lay me low, so this will be short.

In Lisbon at the conference I had the honor to be one of the facilitators of a group of 20 plus people with diabetes to learn what they do well and what obstacles they run into managing their care. It was a lively and eye-opening session. It may also become a journal article. In a second session I also shared, along with two other panel members, any wisdom I have about living with diabetes for five decades.

As the conference is over, I thought I’d share the Poster the husband and I submitted. A quick read that once again dispels this notion that we should tell people to control their blood sugar and their diabetes. Have a look, and I’ll try to get past this cold.

IDF World Congress and mom

It’s been a bit crazy here the past few weeks. Tomorrow I am moving my 92 year old mother (above) into a third independent/assisted living residence. All I can remind myself of is, “Three times a charm.” Then Friday I am leaving for the IDF World Congress that begins next week in Lisbon.

Should you be attending the conference. please do stop by. I will be facilitating a session called “Learning Lab: The hidden impacts of diabetes beyond the cost of insulin” Tuesday, December 6th at 10:30 am, and participating in the Fireside Chat session, “Coping with Change” Wednesday, December 7th at 2:30 pm.. It’s always lovely to be part of the diabetes community wherever I find it in the world.

All to say this space may go quiet for a few weeks. In the meanwhile, happy holidays and let’s all keep the faith.

Big news: Finally a drug to delay getting type 1 diabetes

I took this off TCOYD’s website:

The FDA just approved the first-ever disease-modifying therapy for type 1 diabetes! It is called Tzield (teplizumab) and is indicated to delay the onset of type 1 diabetes in adults and pediatric patients aged 8 years and older who are at high risk of getting type 1. The average delay in the onset of T1D observed in the clinical study evaluating the safety and efficacy of Tzield was approximately 3 years!

Thanks to this breakthrough in diabetes treatment, individuals who are at risk of developing type 1 diabetes—especially first-and-second degree relatives of someone who has type 1—can get screened for the antibodies that predict the onset of T1D. If they test positive for the antibodies, they can look into Tzield as a potential therapeutic option to delay the onset of T1D.

There are many ways you can get screened for T1D, including at home kits that utilize a simple finger stick for blood. The website is a fantastic place to learn more about Tzield and the different screening options.

Yoga and meditation breaks help when living with diabetes

Sorry, you can’t play the image above, it’s just a photo. But there are two videos linked below, just click on the links.

Certainly if you do any form of meditation, including just sitting and breathing, or yoga, qigong, which I do, or Tai Chi, they are a wonderful break from the day to day stress of life – and diabetes management.

My friend Karen Rose Tank, a long time yoga practitioner, made two videos for a wonderful organization – Diabetes Sisters. Take a look, they’re short enough to do easily, and powerful enough to offer a healing or just soothing experience. And who doesn’t need that these days?

Meditation video

Yoga video

World Diabetes Day, take Medtronic’s Blue Balloon Challenge to donate diabetes supplies

Medtronic, maker of insulin pumps, is kicking off this year’s World Diabetes Day, today, with their #BlueBalloon Challenge. All that’s required is you shoot yourself in a very short video, or photo, doing anything in your ordinary day, while bouncing a blue balloon. Then post it. The whole idea is to raise awareness about the fact that living with diabetes is an unseen extra balancing act we perform everyday. For every uploaded video or photo, Medtronic is donating five euro to Life for a Child that gets diabetes medicine and supplies to children with diabetes.

How to take part?

Every time someones performs a #BlueBalloonChallenge, Medtronic will donate 5€ to Life For A Child

Film yourself

Simply share a video or photo of yourself keeping a blue balloon up in the air.

If you dont have a balloon at home, you can either try our Instagram filter, or request a balloon to be sent to you by our partner #dedoc°

Post it

On social media using the #BlueBalloonChallenge and tag @MedtronicDiabetesUKI@dedoc_org@lifeforachild. We’d love to see your creative side, however you want to do the challenge is up to you!

Tip: How to handle the rise in blood sugar from a cortisone shot

I think I’ve posted this tip before but it’s such good information I wanted to do so again. I recently had a cortisone shot and my blood sugar started rising a few hours after. I immediately thought to dose more rapid acting insulin (I’m on MDI), but I remembered, when I’d had this situation a year ago, I reached out to diabetes educator extraordinaire, Gary Scheiner, and searched back for the email where he’d advised me. His advice was opposite what I’d thought to do.

Rather than raise your rapid-acting insulin, except of course for correcting an ordinary high blood sugar from food, raise your basal.

Gary says: Most people need to raise their basal insulin by 50% starting about 6 hrs post injection, then double their basal on days 2 and 3, then taper down.  Some need to triple their basal.  The Humalog doses (rapid-acting) can remain as-is (correct any highs and cover meals as usual); the extra basal takes care of the insulin resistance caused by the steroid.  

I take 6 units of Tresiba in the morning and one unit before bed. The day of the shot, which I’d gotten at 2 pm, I saw my blood sugar rising around 6 pm. I took extra Humalog for the rise, but also took 3 units of Tresiba before bed. That’s the 50% extra.

The next day I took 10 units of Tresiba in the morning and nothing at night because it looks like I wasn’t rising. Stead overnight around 93 mg/dl, the second day I took 8 units of Tresiba and nothing at night. Today, the third day, I took my normal 6 unit dose.

I think because I tend to be insulin sensitive eating a low carb diet and walking every day, I didn’t have to take the higher doses Gary suggested. But you may need too. As everything diabetes, it’s trial and error – but knowing it’s the basal insulin to raise is key.

Sorry folks on pumps, I can’t tell you how to translate this.