I really have to scratch my head when I read headlines and articles like this one published yesterday in USA Today. Is there anyone in the diabetes community who doesn’t know this? And how many people, not in this community, who have diabetes don’t know this? I hate to admit it, but probably enough to make this headline seem like news.
I know that from the ten years I spent criss-crossing the country as a peer mentor speaking to groups of PWDs largely at their support group meeting. But then I say, shame on their health practitioners for not communicating or making sure their patients understood this.
So the bullet point is a new study from the Harvard T.H. Chan School of Public Health found that if we avoid high-carb, highly processed animal products we’ll live longer and have a reduced risk for cardiovascular disease and cancer.
Eli Lilly is radically changing course after years of inflated prices and come the fourth quarter of this year, making their Humalog and Humulin, their state-of-the-art analog insulins, available for $35/month to those with private health insurance.
We saw this happen earlier this year when Congress passed a bill capping monthly insulin at $35/month for those who have Medicare.
Yet, those who didn’t were left in the dust. Now Eli Lilly CEO David Ricks says, “We are doing this completely voluntarily because it’s time and it’s the right thing to do.” Well, we might argue the same was true years ago, but that said, this really is a big loosening of the stranglehold Eli Lilly has had on the pricing of insulin, a drug as you well know, millions of people will die without access to.
One can only hope the two other giant Pharma insulin manufacturers — Sanofi and Novo Nordisk — follow suit.
Yup, I know, in my last post I shared a recent podcast and said it was well worth listening to. How embarrassing, now to post a second podcast and yes, even though I am humble and shy, tell you it’s a really great conversation.
On this Salience Podcast, salience meaning things that are particularly noteworthy, my host and friend Zhen Goh, sociologist, cultural and complexity researcher and a student of the Dao and I dive into a great deal surrounding diabetes and its management that you rarely hear about including the relationship we have with health professionals and they with us, and how it affects our lives.
Here’s the brief: Today on the Salience Podcast, we discuss the issues around industrialised healthcare’s culture of control, and how we can move from a more pathogenic culture of seeking to “control” chronic diseases, to one that recognises the variability of patient lives, and encourages salutogenesis – or, the sense of coherence that patients can seek by cultivating their ability to understand their own condition, manage and respond appropriately, and to also create meaning around their experience.
You may think me biased because February 3 I was a guest on the Embracing Diabetes podcast, available on Apple and Spotify. But there’s something about a podcast on diabetes led by a woman who has lived with type 1 diabetes more than 25 years and another PWD who is also an endocrinologist. What these two women, respectively Amy Stockwell and Liz Stephens, diabetes advocates and educators, bring to the party, is exactly the Embracing Diabetes tagline — compassion, community and creativity.
Funnily enough, I’ve met both Amy and Liz in the flesh. I met Amy years ago at a Diabetes Sisters conference and felt a kinship immediately, and had dinner with Liz years and years ago in Portland, Oregon when a mutual friend, who also has type 1, brought us all together for scrumptious, Northwest healthy/hippie cuisine.
Normally, I hate listening to myself, but I actually enjoyed listening to my own podcast and others I’ve heard on the channel. I share my own history of course, stories and experiences, and wisdom about “the life” and our interaction with our health professionals. So pour a cup of tea, or lace up your sneakers, and tune in.
You likely know I’m a big fan of endocrinologist Steven Edelman (founder of TCOYD) and his recent plunge into stand up diabetes comedy along with his sidekick endocrinologist Jeremy Pettus.
This video just crossed my email box and I thought it worth sharing. I myself cannot yet see using the Eversense CGM (why cut into my body if I don’t have to?), but if you’re contemplating it this may be of interest.
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.
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.
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.
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.
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
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.”
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.
Diabetes Stories 