Renfrew Center conference opens my eyes on eating disorders

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I attended The Renfrew Center’s 29th annual conference last weekend in Philadelphia that brings together expert speakers in the care and treatment of, and research regarding, people who have eating disorders.

I was not a speaker, just one of the few hundred participants who gathered to learn and expand my understanding and knowledge. I always think it’s good to expose yourself to things outside your own field, they generally lead to new insights in your own work.

Most attendees were therapists and dietitians, many of whom specialize in working with people who have an eating disorder. From observation the group was 98.5 percent female. At one point I thought, so this is what the world would look and feel like if only women existed. It wasn’t bad 😉

I attended two lectures on relational therapy, a personal interest as the Flourishing Approach I share with health professionals is grounded in relationship centered care. The sessions confirmed my views: that a major source of suffering is isolation, a major source of well being is connection, that in healthcare we apply vague principles based on averages gathered in highly structured trials to complex individuals living in the real world.

The speakers were top notch. The relational sessions I attended were led by Amy Banks, MD and psychologists Judith Brisman and Judith Ruskay Rabinor.

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Also fascinating was learning more about the bias of scientific research, what gets published and what doesn’t. PhD Laura Hill mesmerized us regards how brain chemistry and neuronal wiring is a key component influencing our eating behaviors. It is not just emotional.  Further, for someone with a disordered brain, thoughts and feelings around changing how they eat is uncomfortable, frustrating, frightening and herculean beyond our imagination. Truly, we can’t imagine.

Journalist Laura Ling was the first day’s keynote speaker. Compassionate and passionate,  she shared her harrowing 140 days of being held hostage as a prisoner in North Korea. And since the conference theme was “Discerning Truth,” the next day’s keynote was delivered by William Doherty, Professor and therapist, who kept us laughing through his dissection of our divisive political environment.

Of course food and diabetes go hand in hand, so I was also interested why it’s so hard for people with diabetes, largely type 2, to change their eating habits when their health depends on it, and curious if diabulemia is seen as any different than other eating disorders. To be honest, there wasn’t much to be had regards diabetes, but I have gotten completely sucked down the “rabbit hole” on disordered eating. I am eager to understand  for those who live with anorexia, bulimia and/or binge eating, what psychological and biological issues are prompting the starving, purging and stuffing?

Next year’s conference will be in November in Philadelphia. In addition to out patient services around the country, Renfrew may be the only eating disorder center that has a residential facility in Philadelphia for those who need a more comprehensive, structured and intensive level of care. The Renfrew Center has been on the leading edge of this work since its establishment in 1985. I was happy to widen my lens.

Speaking at the International Diabetes Federation World Congress in Busan

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It’s an honor, it’s a privilege, it’s a pleasure. Thursday, December 5th, 10:15 AM I’ll be speaking as part of a panel at the scientific IDF World Congress. As part of the “Education and integrated care” stream, I’ll present to health professionals and researchers the Flourishing Approach – how health professionals can work with people who have diabetes from a biological approach, not our current machine approach. So, if you happen to be in Busan, South Korea….please do drop in.

Also, hanging in the poster exhibit room will be two posters I’m co-author of and very proud of. One, with Trent Brookshier, a newly minted lovely doctor. It’s our joint concept that renaming Pre-diabetes Stage 1 of Type 2 diabetes that both people with diabetes and their doctor would take quicker action. He ran a study that showed just this. The other poster captures (as seen below) the remarkable diabetes camp psychologist Daniela Rojas ran in Costa Rica this year with my book, The ABCs of Loving Yourself With Diabetes as a tool for shared reading and sharing of feelings after each camp activity. 67 kids got to talk about things they never had before from bullying to shame to grief for their parents.

Click here to see Stage 1 Poster renaming Pre-Diabetes

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On the way, the husband and I will be first going to Sendai, Japan, where we’ll be presenting the Flourishing Approach to clinicians at the Sendai Diabetes Clinic and Education Center. I don’t know, does the world get smaller as I get older? Both the husband and I lived in Japan, separately (actually that’s where we met) so this is rather amazing; the first time anyone in Japan will here about the Flourishing Approach.

After the IDF conference, we’ll return to visit friends in Tokyo and then head south to Sydney where we will be staying with friends. That’s the vacation part, or rather the writing a book about the Flourishing Approach writing retreat. Our friends have houses in both Sydney and the Blue Mountains, it will be summer in winter and there will be no distractions other than blueberry picking. Now that’s a perfect formula for writing a book.

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Yes, that’s a photo from the last trip to Oz. Yes, there will be photos on Facebook. Hope to see you there.

The never-ending, never-knowing state of “denied” drug coverage. Part 2

First part here.

I called the Baqsimi savings card program to find out how to activate the card. They said you don’t need to activate this card. They also said my local pharmacy needs to call them so they can transfer some information and then I will be able to get my free first product. Okay….

Off I went again to my local pharmacy. I relayed this information and gave them the sacred telephone number they needed to call to make this magic work. They called. Long story short: I am not entitled to this savings (Baqsimi for free, link in first part) because I have Medicare. First big let down, confusion, inaccuracy, bias against old people, you pick.

I asked my pharmacy what would a two pack of Baqsimi would cost under my Medicare coverage. Answer: $270. The reason this is interesting is because when I was on the phone with Medicare questioning the “sort of, but not, denial letter,” (I refer you to the first part of this story as linked in the first line), I also asked them what will it cost me as they’ve approved coverage. They said it would cost me $221 for one bottle and $442 for the two pack. Yes, almost twice as much as what my pharmacy quoted me and I paid. I guess I’ll know tomorrow if that’s accurate when I pick it up.

Moral of the story: There is none. Our healthcare system is broken. When I related all this to the husband, he laughed like a hyena and said, “They want you to suffer!” (pharma, the health insurance companies). At least he got some good happy hormones flowing.

So with no moral I’ll just offer this advice. Do everything in 3s: Research online, research by asking your friends, research by scanning sites. Ask a company rep, then ask another company rep, then ask your pharmacy. If your claim is denied, appeal, appeal, appeal.

I’ve read it too many times – health insurance companies deny everything today expecting people not to bother to appeal, but those who do very often get what they fight for. It’s not a happy story, this is not the world I want to live in, but it’s the only way I know to work within the system.

Note: I sent these two posts to my wonderful endo and he replied, “Thanks for sending… sorry to find this outcome. The challenge with CMS and Medicare is that they are typically about 3-5 years behind the current with regards to coverage etc. If I were to write an “off shoot” article from yours, it would be about how I call the “physician appeal line“ and get re-routed 5 times between people telling me it’s not in their department’s job to handle what it is I’m asking for. Finally, I end up with the same person I started with and try to channel all of the calmness I have stored, while listening to on hold music. Or, what’s worse, is having written an appeal letter that has literature citations and a detailed list of reasons why a patient needs X drug or Y device, it being made abundantly clear during the peer to peer ( MD to MD ) phone review and find no one has read my letter. The world we live in … and yet, nevertheless, she persisted.”

Conclusion: Healthcare is also broken for health professionals. Finding a good one is half the battle, especially when they battle for and with you, realizing they too find a powerful force aimed at deferring them.

The never-ending, never-knowing state of “denied” drug coverage. Part 1

If the husband had been filming me this morning while I was on the phone with Medicare, and we posted it, it would have gone viral. I’m sure. A bit like Norway’s very popular “slow TV.” Throughout I was the picture of calm. Amount of minutes spent on phone: 57,  number of reps talked to: 4, number of departments switched to: 2, number of times I had to call back because they dropped the call: 2.

My call was prompted by this letter I received (black boxes just to cover my personal details) that said I don’t have coverage, and I do. What did I discover on the phone – Medicare will cover Baqsimi – because my endo wrote a request for prior approval – but it will still cost me $442. What?

 

Screen Shot 2019-10-07 at 12.42.53 PM.pngNo rep I spoke to knew if Baqsimi was a “Tier Drug” and if it was, what tier it was. This determines the cost. None of them obviously wrote the letter I received so they sympathized with my confusion.  Frankly I’m sure a lawyer wrote this letter so that most anybody receiving it would read the headlines, assume they were denied coverage, and toss the letter in the bin, and their hope along with it. After all, the letter was six pages long. The other five were about appealing the letter’s decision.

In my online sleuthing, I actually discovered that Baqsimi offers a savings card. Hmm…maybe I buried the lead. If you want to sign up for the card look at the grey bar toward the top where it says, “Sign Up.” It’s easy to miss…I wonder why?

If you’re lucky, you might get your first bottle for free. Of course, I don’t know yet if the card will work for me because after I printed it and brought it to my local pharmacy, along with a script from my endo, the pharmacist went into his computer system and it said I was “denied.” There’s a lot of people in healthcare these days really liking this word “denied.” Then in small print it says somewhere on the one page that accompanies the card you that you have to activate it.

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So that’s my next step. Will it work? I don’t know yet. Will keep you posted. Conclusion here.

What character does diabetes play in your life?

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Daniela Rojas above at Dia Vida Diabetes Youth Camp, Costa Rica

It is my great honor and pleasure to know Daniela Rojas. Daniela was born and raised in Costa Rica, is a psychologist, has had type 1 diabetes since the age of 9 and is helping people with both type 1 and type 2 diabetes develop greater emotional strength to manage their diabetes.

I wrote about a diabetes camp Daniela ran, the first of its kind anywhere, on LinkedIn. At this 3-day adventure camp she used my book, The ABCs of Loving Yourself with Diabetes, (the translated Spanish version) as a tool for 70 kids to share their feelings, fears, concerns that a life with type 1 diabetes brings.

Two weeks ago Daniela pioneered again a resource for helping people with type 2 diabetes manage their condition, again using my book. She designed and ran a workshop titled, “Diabetes as a character in your life.” She had 30 participants, men and women, think about the character that diabetes plays in their lives, and read an essay in my book that touched them relating it to how they can put that character in its proper place.

The inspirational essays in the book helped people to express their concerns and bond with one another, and themselves, taking back their lives, with confidence and hope, from the “character” to whom they had given it.

 

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It’s funny to me that a young woman in Costa Rica is doing this important, essential work while it’s almost impossible to get any funding for the psycho-social aspect of diabetes or even have an institution that would allow interventions such as this for local people with diabetes.

Daniela is creating her own beautiful story. She is touching the lives of so many who are bereft of emotional support and knowing they will come through this. I’m only grateful I can play a small part.

One of the pages from The ABCs of Loving Yourself with Diabetes

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How to restart a Dexcom G6 sensor and what to watch out for

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Tape I use (except when I forget) to keep my Dexcom sensor on. Comes in a roll. You can order online, sorry, I’ve forgotten what it’s called or who makes it.

Restarting a sensor is easy. When you start your sensor session keep the code of that sensor written down somewhere because you will need it do this easy restart.

(This is the more complicated way if you’ve not kept your code. It’s the second method offered, the first one is what I describe below.)

Easy restart in 5 steps

Let sensor expire
Restart it choosing “no code.” Let it run 15 minutes
Stop the sensor session (It will tell you you can’t restart but it’s not true)
Restart the sensor with the code option
Sensor will begin its 2 hour warm up and you’re good to go

What to watch out for? Twice it’s happened to me. While my sensor is on its second round, it falls off. Usually I’m changing my shirt and that knocks it off or some such thing. The point is that the tape has loosened to the degree that the slightest movement will knock it off your body. I don’t usually find I need to use additional tape on my first 10 days but I stupidly forget I absolutely need to do so entering the second 10 day period.

If you call Dexcom they’ll give you 10 clear, tape covers cut to cover over the sensor’s adhesive. I bought the medical tape I use a long time ago on the internet, but I’m sure you can google it and find out what many of us use. If you’re reading this and you use a tape you like, please share.

As for sharing I want to thank my fellow T1D bloggers for putting this information out there, (up there in this blog) because this is how I first discovered a 10 day G6 Dexcom session can become 20.

I’ve only restarted my sensor twice, since discovering this, and not tried restarting it for a third round so I can’t tell you whether or not you’ll be successful. But, hey, if you get that far, you can always give it a try.

Abbott and Sanofi enter new partnership for data sharing

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Abbott produces the very popular FreeStyle Libre flash glucose monitor. It’s largely like a continuous glucose monitor yet distinct from Dexcom it doesn’t have alarms, it lasts 14 days and you get your numbers by waving a small reader over the device.

This new collaboration will progress data sharing between the FreeStyle mobile app and Sanofi’s cloud connected apps and future smart insulin pens.

The expectation of course is that this data sharing, when available (don’t know currently) will enable people using the devices and their doctors to make better management decisions particularly around insulin dosing.

Yet another example of looking at the clouds to make everyday life here on the ground easier living with diabetes.

For more information, click here.

 

Join the NYC vigil and insulin protest Sept 5

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If you’re in NYC this Thursday Sept 5, join advocates of T1International gathering for a vigil for those who have died due to the high cost of insulin, and holding a peaceful protest. I spent yesterday, my birthday, helping to paint slogans on signs for the movement.

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Since 1996, the list price of insulin has increased by over 1200% in the United States. Eli Lilly’s Humalog insulin increased in price by 585% between 2001 and 2015 alone.

“People with type 1 diabetes are tired of watching our people die from debilitating insulin prices while pharmaceutical companies like Eli Lilly rake in billions in profit,” said T1International’s New York Chapter Leader Lauren Lehrer. “The emotional and financial weight of affording our care is ever-present in our lives and the lives of our families. Our vigil is a call to hold insulin manufacturers accountable for price-gouging patients. Eli Lilly, Novo Nordisk, and Sanofi business practices are killing and maiming us. We gather to say no more.”

Now that I’m on Medicare, after four months of partial insulin coverage you fall into the donut hole, meaning the majority of the cost of insulin is on you. It’s incredible at 66 after 47 years with type 1 diabetes I’m forced to think which friend in Canada I will visit to bring insulin over the border.

This fight about the high cost of insulin (unaffordable for too many without health insurance) is gaining momentum predominantly from the grassroots efforts of those of us who live with diabetes.

So wielding a white paintbrush yesterday seemed like a perfect way to spend my birth day.

The blood sugar and the corn muffin (or diabetes selective memory)

Somewhere on a road trip in New Jersey my friend and I stopped at a diner for lunch. Honestly, I haven’t eaten a muffin, scone, bagel…in years, and years. But for some insane reason my mind said, “Oh, let’s have a corn muffin today.” A treat. Oops, without knowing it I was experiencing “diabetes selective memory.”

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When we sat down at the diner for lunch it was 2:20 PM and my blood sugar was 74. An hour later, after taking what I thought would cover the amount of the muffin I ate – half the muffin – I saw this.

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Yikes, I took more insulin. A short while later I saw this…yikes, I took more insulin…

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The high point, no pun intended was 202. Then it began to come down. Luckily I never crashed. It settled at 112 at 6 PM.

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This experience was a stunning display of a remarkable head space we fall into that my friend termed, “diabetes selective memory.” Who was I kidding, two units of insulin for that fluffy yellow, spongy carb bomb called a corn muffin? I knew better, somewhere in my global memory.

When my friend came up with the term she’d been denying the fact that eating lots of carbs and fat shortly before bed raised her blood sugar to almost 300 at 3 am even though when she went to sleep her blood sugar was perfect.

She knew better. She saw the rise night after night but somehow wiped it completely from her memory. I too chose to not remember what a muffin will do to my blood sugar. Yes, it had been a long time since I ate one, but still, this was a clear case of DSM.

Was it worth it? Not so much. Maybe if the muffin had been more delicious I could say yes. But it reminded me that if I have one again in another ten years, I’ll bring two insulin pens to make sure I can cover the rise. 😉

Insulin’s indirect path. Diasome is working to change that. Plus, my post for them – on innovation.

It’s a funny thing that we’ve known for a long time injecting insulin is a poor way to get it into our system. It doesn’t go directly where it’s needed and its path isn’t the same path as when insulin is released in a body that makes it. Yet, even though we’ve known this for –  ever, few have done much to improve this faulty system.

I don’t normally put stock in research companies working on tangly problems like this, but I’m intrigued and attracted to the idea that a company named Diasome is working to change this. They regard where insulin goes as important as dosage and timing. And so do I.

On another note, I wrote a guest blog post for them as they want to bring thought-provoking thinking from the diabetes space onto their site. I wrote about innovation, what we’ve seen over the years — and what we haven’t. Clue – it has nothing to do with technology.

Diasome’s explanation of where injected insulin goes and where it should