Team Type 1 Foundation helps Abbott donate meters and strips to people with diabetes in Rwanda

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The headline is the story but first let me say forgive me for my absence here. For the past two weeks I have been helping a dear friend who was in the hospital. First as a patient advocate. Not in the diabetes sense, merely in the everyone in the hospital needs an advocate. I have told the husband this time and time again, “If I’m ever in the hospital, you better be watching over me like a hawk?” Second, I was helping my friend transition home the first few days after being released from the hospital.

I have learned a lot about how hospitals run and I’m more frightened than ever. While my friend was in a major, well reputed New York City hospital, the fragmentation of care and tactical application of care by the nurses made me feel overwhelmingly sad, then mad. I do believe the care of “tending” to one as a human being is integral to one’s recovery from any ailment.

But, on to other news. This story passed my desk and I think it’s well worth noting: it reminds me what we do does make a difference. The Team Type 1 Foundation who have long built a relationship with the Health Ministry in Rwanda helped Abbott, maker of the Freestyle Libre, donate glucose meters and nearly 12 million test strips to people living with diabetes in Rwanda. Amen.

Making our illness stories visible

When I first heard about painter Regina Holliday and what she’s doing I was astonished and moved by what she took up as her mission: interpreting people’s illness story and painting it on the back of one’s jacket. She calls her work the “Walking Gallery” as we exhibit it merely by walking through various medical settings.  For free, she paints your illness story on a jacket you send her and then returns your jacket asking only that you wear it in public a few times a year. I wrote about her here in 2016.

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I sent her a jacket as soon as I’d read about her. I got my jacket (above) back a few months later with her painting emulating my own whimsical illustrations. Since I am blessed to speak at diabetes conferences throughout the year, the most recent was last month, the IDF World Congress in Busan, Holliday’s work was on display.

IMG_0477.jpegIt gets looks, smiles and I think the heartfelt sense of recognition that we who live with a chronic condition are all walking around with something extra we carry that few hardly ever see.

I sent Regina an email and the photo above when I got home and she told me she’s still painting stories. If you’d like to be part of the Walking Gallery, check out her website here.

 

A report on the Flourishing Approach as presented at the IDF World Congress in Busan, South Korea

This morning I received a Christmas present. Corinna Cornejo, a blogger with type 2 diabetes at Ascensia Diabetes Care, sent me her write up on my Flourishing Approach lecture at the IDF World Congress in Busan, South Korea.

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Attended by 6,000 health professionals, researchers and people with diabetes, I always enjoy the World Congress, and this year it was particularly joyful seeing so many friends and colleagues there.

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Thank you Corinna, merry, merry to all.

Traveling from Sendai to South Korea To Osaka to Tokyo, so far…

As you can tell, this trip has an Asian flavor. For the past three weeks I have been traveling in Japan and Korea. Two events took me out here: 1) Presenting the Flourishing Approach to 20 doctors, nurses, pharmacists, people with diabetes and staff of the Yamada clinic and education center in Sendai, Japan. The second was the International Diabetes Federation (IDF) World Congress in Busan, Korea.

The presentation in Sendai was the result of meeting two Japanese health professionals four years ago at the IDF World Congress in Vancouver after receiving the Lecture Award and lecturing about the Flourishing Approach who said to me, “If you ever come to Japan we would love for you to present your Flourishing Approach to our colleagues.” The World Congress in Busan asked me to share the approach in their Education stream this year.

So, the husband and I embarked on this trip with changes of clothes for three countries and three climates. Next week we will be capping the trip with a stay with friends in Sydney  – provided the wildfires die down and the air quality rises. Still unknown. But it’s been a joyful and hugely rewarding experience thus far.

Arriving late at night in Sendai, we were whisked to our hotel by our hosts, the Yamadas, Dr. Kenichi Yamada and his wife Itsuko, who arranged everything to make our stay comfortable and successful. Now the Flourishing Approach has officially debuted in Japan, a country where illness is often hidden, let alone embraced by a flourishing attitude. But the Yamadas embrace it. Their clinic and education center is leading edge.

Then we flew to Seoul on our way to the conference in Busan. We found ourselves unexpectedly caught up in a major protest one afternoon that brought out at least 20 police vans, and I was surprised how little English was spoken and understood, how everything has sugar in it, including plain yogurt, and I so sorely missed cream for my coffee and found my blood sugars reeling not being able to decipher what I was eating or its carb content. Oy….We soon realized Indian food was our best choice of fare and enjoyed out throughout most of Korea.

This, our sixth  conference since we began going to the every other year World Congress was enormous fun. I had two posters in the poster hall and met, for the first time, the doctor who co-authored one of the posters, Trent Brookshier. Trent lives in California, so of course we’d meet in Busan. We both believe in the merit of renaming “pre-diabetes” stage 1 of type 2 diabetes to prompt greater action and less complacency.

I presented the Flourishing Approach in the Education and Care stream and got to see and spend time with a great many of my fellow diabetes advocates, particularly those I only tend to see at these global conferences. After my session, I was approach by a doctor from Pakistan and nurse from China who are eager to bring the approach to their home countries.

After a week in Korea, the husband and I flew back to Japan via Osaka where we spent time with a friend and are now in Tokyo to see friends and visit as many fountain pen shops in a week as is humanly possible. Yes, we both have the bug and Japan is a Mecca for pens and paper.

Admittedly, this is my first post since I left home because I was just having too much fun to stop and record it. Also, I am just giving you the top note as this trip has been so rich I can’t possibly put it into a few words here, so let me finish with two photos. On the top on the left is Wataru Shoji, the health psychologist/professor who was instrumental in bringing me to Sendai and on the right the husband who supports my work in every way. The photo beneath is the traditional foods market in Seoul.

I am truly blessed to do work I love, that takes me around the world, where I meet friends and colleagues and have one heck of an adventure. I am posting photos of the trip regularly on Facebook so forgive me for not putting them here, but please have a look there.

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Bringing a flourishing perspective to Japan and South Korea

L1010664.jpgI remember how much I coveted this bag. It was given out by Novo Nordisk at a diabetes conference. I don’t remember what conference, what year, whether I was presenting, but I remember how crestfallen I was after seeing so many people toting it over their shoulder and when I located the Novo Nordisk booth, after much sleuthing, being told they had run out.

I was told if I put my name on a list, they would be handing out more bags the next day. Guess what? They weren’t. But a tall, kind woman at their booth took my name and address down and said, “I have one left in my office (in Copenhagen, Denmark)! When I get back I’ll mail it to you.” Yea, right.

Well, I did hope, just a little…who wouldn’t? But then the first week passed and no bag. Then the second week passed and no bag, and I thought, yea, right you’ll mail it to me. But a week later, I walked back to my apartment and okay, you know what happens now. A giant FedEx box was in front of my door. Bless that woman, she was true to her word.  True to her word, not even knowing how much that bag had burrowed into my head.

It’s not really the burgundy color, a favorite, that said you belong in riva’s apartment. It’s not the bag itself which isn’t much different than any cloth shoulder briefcase-like bag. It’s not entirely that it has lots of zipper compartments. Nor the fact that it was free and a momento of the conference. No, it’s the tag text, “I am traveling to change diabetes.” It totally represented my identity. It said everything I was and was doing.

That story is a long way to say, here we go again. The husband and I leave Thursday for Japan where I’m presenting the Flourishing Approach to health professionals and medical students at a diabetes clinic in Sendai. A 13 hour flight to Tokyo, 4 hour layover and 90 minute flight to Sendai. All because we love sharing this learning.

We’ll be met at the airport by Dr. Kenichi Yamada, the force behind the Education Center of Kenichi Yamada Internal Medicine Clinic. His wife, Itsuko, who works at the center and heard me present the Flourishing Approach in 2015 at the IDF World Congress, has been diligently translating my presentation into Japanese and seeing to all our needs, including meals and bullet trains.

Afterward, we fly to Seoul, where I’ve never been, and am only slightly nervous having looked at the map and seeing how close it is to the border of North Korea. After all, I just heard Laura Ling share her 140 days in captivity in North Korea as keynote speaker at the Renfrew conference.

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Then we train to Busan for our sixth IDF World Congress (they happen every two years and we’ve attended them since 2009 in Montreal, Dubai, Melbourne, Vancouver and Abu Dhabi. It’s a very nice way to see the world and meet diabetes people from all corners).

I’ll be presenting the Flourishing Approach in a stream on improvements in diabetes education and care. Of course in addition to the learning, and entertaining, like watching someone make extraordinary sand paintings as we did in Dubai, the conferences are a wonderful few days to catch up with the diabetes friends I’ve made around the world, and truly, there’s nothing like that.

Then we fly back to Japan for a day in beautiful temple-laden and geisha-strewn Kyoto and train up to Tokyo to visit friends and fountain pen stores.  I lived in Tokyo for six years in the 1980’s (that’s where I met the husband) and japan is both in my heart and the Mecca of writing instruments.

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Then we fly down to Sydney and stay with friends. I am expecting their house in the Blue Mountains will make the perfect writer’s retreat due to natural beauty and lack of distractions.

So is the traveling bag coming with me? Sadly not. With luggage limitations I’m going to do my darndest to only bring two roller boards and a backpack. I wish that I could bring it, but the sentiment has never left me since I first set eyes on the bag, and three weeks later removed it from its carefully packed Fedex box.

During our absence the husband’s sister and brother in law get to enjoy our tiny apt so we are all changing time zones.  I may not be posting much while traveling, but I will be posting photos on Facebook. In the meanwhile happy holidays to all and to all a good night.

 

 

 

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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