If you’re interested in some of the latest technological advances from the 13th Advanced Technologies and Treatments in Diabetes that took place last month in Madrid, Diatribe covers it in two posts, here and here. As you’d imagine, lots of talk about CGMs and “time in range.”
…February 22nd, 1972 when I was diagnosed. My doctor, during my four day hospital stay, made very clear to me all the complications I was going to get. One was certainly going to kill me; the others just degrade my small life along the way. I know the feeling I harbored looking around the grey walls of that hospital room: life was beginning, at the ripe age of eighteen, and ending at the same time.
Yet, this Monday night, 2020, I celebrated with my loving partner, the husband, almost five decades of a darn good life with diabetes. Of course, 48 years ago I didn’t dare think there’d be a husband. Who would possibly take diabetes on with me, let alone understand the constant micro-management of a disease no one sees? But he has, does and always will.
Ironically perhaps, we celebrated over one of the hardest foods for people with diabetes to manage – yes, pizza! Our favorite arugula, artichoke thin crust pizza at Whole Foods’ pizza bar. And we involved Krystle, our server from behind the counter, in the fun.
These days I’m pretty sure I’m going to last about as long as anybody else. Something will get me and it may or may not have anything to do with diabetes. I don’t think about it much.
I’m much more interested in enjoying the moment. Maybe that’s age, or maybe it’s truly knowing that it’s the simple pleasures, and the moments of connection with friends and strangers, that make a life worth living. I’m glad I’ve lived long enough to know that.
Even though I’ll be marking 48 years with T1D in less than a week, this still gives me pause.
Sorry, the above is a photo not a video. That said, I’m a big fan of Dr. Mark Hyman. Hyman is the Functional Medicine Director at Cleveland Clinic and a blazing advocate for “health-care” as opposed to traditional medical “sick-care.”
On his podcast, The Doctor’s Farmacy, Hyman interviews various experts in chronic conditions, the microbiome, healthy eating, social injustice and his podcasts areinformative, easy to understand for the lay person and passion-driven.
In fact, after just listening to the last one, Corruption in the Food Industry and the Challenge with Our Dietary Guidelines, as I was making dinner, I’m ready to join any advocacy group to put nutrition back into our diets, federal programs and communities. You probably know Trump has just managed to decimate Michelle Obama’s efforts to have schools offer healthy lunches.
If you want a worthwhile health podcast to listen to this is one of my favorites. Many of his interviews are also shown in video form on YouTube.
Hedia is perhaps the next generation of diabetes apps now available in Denmark and the UK. They aim to offer their services in the U.S. later this year. They approached me to share my experience living with diabetes and flourishing with the condition in a post.
The husband and I on our recent trip through South Korea and Japan
It’s quite ironic really, well the Danish part. Copenhagen appears a little hotbed of flourishing. The Steno Diabetes Institute has invited me twice to share the Flourishing Approach. Why ironic? Because Copenhagen was where I gained 15 pounds my junior year abroad when I discovered the creamiest vanilla soft serve ice cream and decadent open face chocolate sandwiches.
Today I skill health professionals who work with people who have diabetes in a more humanistic approach, to help them help people with diabetes flourish. It’s joyful work. Living with diabetes, well, as you probably know, holds both highs and lows – every day and every blood sugar. Below a brief excerpt the post:
Could you tell us how you’re coping when having a tough day with diabetes? “Bad days take the wind out of me. I’m disappointed or frustrated by my blood sugars, they’re doing something totally unexpected, or I’m worried that a twinge or a tingle somewhere in my body means I’m getting a complication…”
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.
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.
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.
It 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.
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.
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.
Thank you Corinna, merry, merry to all.
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.
I 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.
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.
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.