From sun to snow and back to diabetes doings

Some would say “All good things must end” as my tropical travels are over; I left San Francisco’s sunlight and temperate 74 degrees to arrive home to New York City’s snow and freezing temperatures. But I am also of a mind that other good things will continue to happen this year. In fact, I have just been invited to speak at this year’s American Association of Diabetes Educator’s Conference in Atlanta August 5-8 — I will keep you posted. And, in a month or so there’ll be a Spanish version of The ABCs Of Loving Yourself With Diabetes available and I’ll be creating a self-management coaching book based on The ABCs for patients and educators.

Meanwhile, fellow blogger Amy Tenderich of DiabetesMine has passed along a notice and request for you to positively impact the future of diabetes care. I pass it along to you here. 

From Amy Tenderich on behalf of the Diabetes Community: “There are a lot of things going on at the troubled Food and Drug Administration (FDA) right now that could have a profound impact on the future of diabetes care, but most of us patients never hear about them… Most importantly, the FDA has created excessive regulatory hurdles that threaten to slam the door on progress in treating diabetes.  

  • Even Rebecca Killion, the FDA Patient Representative who sat in on the infamous Avandia andPfizer Exubera hearings, is speaking out against the commission’s latest moves. Please see this post for her public comments. 
We’re imploring the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. Please see the online petition and letter at www.healthefda.com.  We ask you to help speak out and get our voices as patients heard! This grassroots initiative is shooting for 20,000 signatures by mid-February.
 

 

Back, back, back in the USA

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It’s a slow re-entry here in San Francisco from Tokyo before heading home to New York. I would have liked to add a post while in Tokyo, but I was just too busy. Having lived in Tokyo for six years, from 1986-1992 and worked for Dentsu at the time, then the world’s largest advertising agency by billings, I was just having too good a time visiting friends and soaking up every lovely and kooky thing about Japan. 

Part of that soak included an overnight stay at an onsen (hot springs) in the countryside in a traditional Japanese inn with hot, relaxing baths both inside and under the stars. The kooky part included warm-seat high-tech-toilets in every major department store and restaurant with so many buttons for cleaning and air drying one’s self that I feared pressing any one of them– and often had to search voraciously just for the flush button.

Suffice to say my answer to Asia in general is: “Drink wine,” it will help lower your blood sugar after all the noodles and rice have raised it. And, as therapists advise, use your numbers as information, not an excuse to beat yourself up. My blood sugars throughout this trip have been far less “in the zone” than usual because my eating has veered from my routine low-carb diet and my exercise has been erratic. I tried for the most part to accept that and to see anew how different foods affect my blood sugar. Luckily, most of the time, I was successful in this attempt.

I did learn while in Japan that the rising epidemic of diabetes has not left them untouched, and why should it when McDonalds and Kentucky Fried Chicken are now staples. Also, one doesn’t speak of diabetes very openly. There are no TV commercials selling meters and strips and if you’re standing in the bookstore in the toonyobyo (diabetes) section you keep your voice down, because to have diabetes is seen as very unfortunate. The Japanese will admit to having “metabolic syndrome” much more easily than diabetes, for that is only a syndrome, while diabetes is an illness. And with many things Japanese, presentation is very important.

Yet, you can see my friends didn’t mind that I have diabetes, and in fact they used it as a great learning opportunity. They got to see up close what it really means to have and live with diabetes and how to take care of it. The constant shots and blood sugar testing were eye-opening, and of course gained much sympathy. And, my friends also went out of their way to provide the unofficial Japan launch of my book, The ABCs Of Loving Yourself With Diabetesat a Chinese restaurant. To my great surprise the book is posted on Amazon in Japan, as well as the U.S., as is also my new book arriving in book stores in July: The 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It. 

In all, it’s been quite a ride. Home Saturday to nurse my coming depression ;(

A hospital where patient experience is paramount

Need a snack? Fruit-only

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The Botanical Garden

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Me and the CEO, Mr. Liak

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Kind reminders to be healthy

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 Can you imagine a hospital where floors are carpeted so you feel calm, soothed and protected? Where doors open silently so as not to jar your jangled nerves? Where vending machines are only filled with fresh fruit and the healthier the meal in the cafeteria the less it costs? How about elevator doors covered in exotic floral motifs and a Diabetes Center where you never wait more than ten minutes to be seen?

I could never have imagined these things but instead I saw them with my own eyes here in Singapore at the Alexandra Hospital. The hospital sits amid a lush and beautiful botanical garden that volunteer employees care for and each floor of the hospital has a view of greenery. In this tropical paradise even medicinal herbs are flowering in the gardens.

This hospital is the vision and result of its CEO, Mr. Liak, and his passionate staff. It is their mission to create a place of healing where people are helped to make healthy choices, even if it’s just taking the stairs instead of the elevator.  No wonder stairways are easily accessible throughout the hospital, not hidden behind impenetrable or locked doors, and they are marked by big wooden red hearts that say, “Please give your heart a lift, use the stairs.”

I had the pleasure to meet Mr. Liak and discuss the state of healthcare in Singapore and the U.S. and the work I am doing bringing a more positive attitude to managing diabetes. Mr. Liak spent three hours with me and my husband, who has worked with him in the past, generously sharing what some would call a contrarian view: give diabetes patients a year of treatment and education and if they improve and own their management, encourage them to be peer-mentors wherein they can give back, help other patients and help the hospital provide its services to more patients. If they don’t take responsibility for their care after a year, patients are free to seek help elsewhere and leave space for new patients at Alexandra Hospital.

To say the least it makes one think. In the U.S. the health care system does not particularly motivate patients to become self-reliant and responsible for their care, and we know this is paramount managing diabetes. In fact, I have heard upon occasion a critical tone from my own endocrinologist’s office when I come in for a yearly visit rather than every three months. But why do I need to come four times a year? I am a well-educated patient managing my diabetes daily and getting the necessary tests as appropriate. I can easily discuss my test results with my doctor over the phone and make any necessary adjustments. I am doing what medical professionals say they want patients to be capable of doing, managing my own diabetes!

After chatting about societal influences on health care and patient behavior, I gave Mr. Liak five copies of my book, The ABCs Of Loving Yourself With Diabetes. His face lit up, he loved it. He said this is what we need, a more cheerful and optimistic attitude about managing diabetes. And with that he toured my husband and I through the hospital halls including what resembled a “war room” filled with storyboards, flow charts and feedback circles reflecting plans for the new, expanded hospital they are building. At every touch-point in the new hospital the patient will be accommodated, from a simple registration process to remote controls where patients can control the light and air temperature of their room. Where room furniture is being built with drawers and countertops that allow patients to put more than one thing in and on them. And who is in the hospital bed photo testing all the equipment? None other than Mr. Liak himself.

Our tour stopped at the Diabetes Centre where I was introduced to the staff and two copies of my book were handed to the Diabetes Centre Director and diabetes nurse. Talk began of translating my book into the Malaysian language, Malay. Thank goodness my head had not grown so large that I could not still get it through the door to the cafeteria where our tour ended. And over a bowl of vegetables and tofu Mr. Liak told me it was a dream of his to employ someone such as myself to consult with his professional staff and help inspire and encourage other patients. Can you imagine? In Singapore, you don’t have to, it’s on the drawing boards.

Leaving Alexandra Hospital I thought if I ever need to be in the hospital maybe I would consider, if time permitted, hopping a flight to Singapore. Meanwhile, I’m happy to do what I can to help the staff and patients here. And now that I’ve finished this post, do what most people who are not in the hospital do in Singapore, shop. 

Slices of diabetes-life in 4 short stories

Through my friend who lives here in Sydney I had two contacts to make while here. One was with the General Manager (GM) of Diabetes Australia, no slouch there, although he was working in his wife’s candle shop when we met and absent shoes. Well, we are in Sydney mate. Diabetes Australia is the equivalent of the American Diabetes Association. Turns out after a nice chat he suggested I send him my new book when published this July, The 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It, and he’ll get it to his media person to possibly distribute in Oz (that’s  Aussie-speak for Australia.)

The other meeting was with two mums of children with type 1. One is the mother of a five year old boy who had to be yanked out of public school because the principal didn’t want to deal with his diabetes and supply a nurse. Now the family are paying private school fees and she told me the law is very grey here as to what services a child is entitled to in regards to a school nurse. Actually the GM of Diabetes Australia said he’d be happy to advocate for her as last year Diabetes Australia took a case to court and won getting a type 1 ambulance driver’s job back. 

The other woman I met is the mother of an eight year old girl diagnosed almost a year ago. Since, she has become very involved in JDRF (Juvenile Diabetes Research Foundation) here and inspired many others. It is interesting to sit a world away and share the same stories and feelings. And I knew beside sharing my knowledge and experience that just having these two women see someone who’s in as good shape as I am after living with type 1 37 years that they would gain something invaluable. The eight year old’s mum sent me this response after our breakfast by the beach:

Hi Riva, 
 
It was lovely to meet you and I take loads of comfort in meeting folk like you who play to win with diabetes. Sometimes I may sound too blasé about diabetes; it is a tough 24/7 disease but I refuse to let it take me and Emily (her daughter) down so I hang on to every positive role model that I can and I know that one day she too will be sitting with someone else over breakfast and be sharing her positive story on diabetes; so a huge thank you. 

Later that day I also met Emily’s dad who is an accountant by trade and has been working nose-to-the-grindstone on an algorithm whereby people who use a pump can better optimize how much to dose and how often to test their blood sugar. My husband came to this meeting as well and being a “systems” guy shared that when dealing with diabetes there are many complex systems to take into account in addition to meds, like food, exercise, stress and emotional resilience. 

Emily’s dad nodded his head, and perhaps gripped his graphs and charts a little tighter. I suspected that they were what was helping him feel he can have perfect control over something he can’t, diabetes, and feel he can protect his child. 

One day I’m pretty sure Emily will be the one to let her dad know that life is O.K and that she is O.K. even living with diabetes, and maybe even recognize that in some way she is “all the more” for what she goes through managing this disease.

…And then I was 36 mg/dl!

I shoulda known some drama was coming. After all, my fluctuating blood sugars have been on my mind these days on the road, as evidenced by the post below. 

So here it was yesterday another beautiful morning in Sydney and I took my first plunge in the pool: 30 laps – mind you they’re mini laps given the size of the pool. Yet apparently I experienced a delayed low, or a stacking problem taking two many mini injections back to back. At one point when I thought I was dropping, I grabbed a piece of a fruit scone only to discover, no, I was going up! So, I dosed another unit of apidra which two hours later had me breathing shallowly and testing to discover my blood sugar was 36!

The husband jumped into sound panic mode. I said, “Go downstairs and bring me a glass of juice. I’ll be O.K.” (or so I hoped). Moments later the juice arrived, the husband was playing watchful nurse and according to the ‘The Rule of 15 ‘(15 grams of fast-acting carb and test in 15 minutes for a low) 15 minutes after downing the juice I was a splendid 82, and 15 minutes later a stable 119. And so today it’s ferrying into the city, meeting friends for lunch, testing, calculating, and so it goes, and goes and goes…………

Diabetes gets tiring on the road

It had to happen. Three weeks on the road, or more apt, in the mountains of Queenstown, New Zealand and the harbor of Sydney, my lack of being able to control my blood sugar as well as I’d like is driving me mad. Translation: being out of my routine, not taking my daily hour walk due to San Francisco-like hills, and finding constant surprises at lunch like a chicken and avocado sandwich that comes on doubly thick slabs of sourdough bread with mayo or a  thimble-full of quiche that comes in a carb-laden pastry shell is wearing me down. 

Then foolish me, I underpacked my Lantus SoloStar insulin pen needles. I had several sample packs of “click-on” needles and misread the 8 mm size as 8 needles in a pack. Unfortunately I have discovered there are only 3 needles in  a pack. So now I have five more needles to get me through 20 more days on the road. Now, tis true, I don’t change the needle every single day, but every two to three days and this won’t get me through. Luckily, I have experimented and I if I stick a syringe in the rubber stopper of the SoloStar as far as it will go, I can withdraw the Lantus as if from a vial.

I just said to my husband, “I’d like to be home now for one day.” He looked at me as though I were mad, here in the midst of white sandy beaches and honeysuckle. But I’d like to watch the morning news, sit at my computer, poke my nose into my neighborhood shops, and with that put on my sneakers for my walk around the park and reach into my refrigerator and cupboard for my usual foods. I don’t really think I’m yearning for snow and frigid temperatures but the comfort that my routine gives me managing my blood sugar. While my crankiness will lift, right now as the Brits would say, diabetes is just “a little up my arse” after 17 days on the road. 

Grappling with food on the road and a sunny Christmas in Sydney

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I can’t complain about a vacation that’s taking me from Queenstown, New Zealand, to Sydney, where we are now, to Singapore, Tokyo and San Francisco before I arrive home. Yet one thing that’s tough, beside the jet lag and time zone changes and more frequent blood sugar testing, is eating almost all your meals at restaurants where you can’t control your food, let alone half the time knowing what it is–well that will come in Singapore. 

Then real life comes flying in to the idyllic lull. Just today a friend back home sent me this article from theNew York Times about how low GI foods (non-starchy, non-sweet foods that raise blood sugar less and more slowly) are better for diabetics than the highly touted whole grain diet. In other words, your blood sugar will rise less and more gradually if you trade in your whole grain bread for nuts, beans and certain high-fiber crackers. 

I’ve known this for quite some time having tested my blood sugar about a zillion times to see my reaction to different foods. So, for me, every day (when I’m not traveling around the world) begins with slow-cooking steel cut oatmeal, to which I add ground flax seeds, cinnamon, low fat yogurt and peanut butter. If I eat bread or ordinary cereal my blood sugar goes off the charts. 

Luckily here in Sydney we’re staying with friends so I’ve stocked the larder with my healthy foods and gotten the expected grimace when I offer to share my yogurt and peanut butter combo. I still don’t know why Danon hasn’t produced such a flavor but no one seems to share my enthusiasm for it. So yesterday my day began with my usual oatmeal and then I had a salad with toasted almonds some raw broccoli, a few slices of ham and a spoonful of hummous for lunch and most nights here it’s fish and greens, since my friends are healthy eaters too, and there’s nothing Bruce can’t sear on the Barbie and make delicious. Of course, Singapore and Tokyo will prove to be problematic again because most dishes are rice-based. And so I will need to stick to grilled meats, miso soup and sashimi. God knows when I first lived in Tokyo 20 years ago the rice was always my menace.

But, back to Sydney. Soon we’re off to the ferry for a 15 minute ride over to the city to buy some Christmas gifts. Still having a little trouble reconciling Christmas carols with bright sunshine and 80 F temps. Guess I’ll just have to force myself to get used to it. 

 

The Secret – we create what we expect

Staring out the staff lounge window at the Cumberland Hospital in Fort Greene Brooklyn, just outside the auditorium where I am going to speak, I watch the traffic move along the Brooklyn Queens Expressway. Manhattan’s skyscrapers sit just beyond. I look up at the sky and whisper, “Thank you for where you have brought me.” This is my second presentation in my native Brooklyn. I’m not being so literal as to be citing Brooklyn in my thanks, but on the larger canvas of my life, to be doing this work.

I am critically aware in this moment that you never know what life has in store. Where you might be a year from now, five years from now. Surely, I never could have guessed I’d be standing in a hospital staff lounge about to speak to a group of fellow diabetics to motivate them toward better diabetes management. Not much more than five years ago I gave my diabetes management little thought. 

I always wanted to teach people that our lives are the projection of our thoughts,  and so we should plant the ones we truly want to reap, and accept our gifts and believe in our dreams. I just never knew sharing these ideas would have anything to do with diabetes. Honest, never.

When I speak to audiences I stress shifting their focus from the burden of diabetes to the rewards of doing the work — whether it’s to spend time with the grandkids, have more energy, pursue a beloved hobby or second career, or give back to the community. Most of diabetes education is about numbers, but the fabric of our life is mostly our thoughts and feelings.

Now at Cumberland Hospital I have finished my hour presentation and a woman raises her hand. After apologizing for coming late she says, “Maybe I missed this but how do you do it? How do you manage your diabetes so well?” The side conversations stop and the room quiets. Everyone is fixed on me. I begin listing all my tricks: my daily one hour power walk, using smaller plates, choosing more veggies and fiberous foods, sweeping most of the carbs out of my diet, and as the preacher in me takes over, the knowledge that my care is entirely up to me and that I don’t harbor a single doubt that I am committed to my best health.

18 pairs of eyes hold mine seeking answers from my passionate pontification. I wind down realizing how revved up I am. This rag-tag group of African American type 2 diabetics, one in a wheelchair, one with a cane, who when I began my talk seemed to only half listen, now applaud this slim white woman. I smile shyly almost shooing away their gratefulness out of embarrassment, yet I know they have been moved and the greatest gift I can give them is to accept their gratitude. 

This is what they don’t get from their doctor or their CDE — the understanding and insight of someone who lives where they live and has conquered the demons diabetes throws at them — at least most of the time. Moreover, many people I speak to are weighted down and held fearful by the loss of family members who have died from diabetes or those currently struggling with its complications. I try to bring them to a place where they can see that the possibility for their life is of their own making, not the legacy of their family members.  

Last year I learned something about my own family legacy. I interviewed my parents to get their take on what it was like for them when I got diabetes at 18. My mother told me something I never knew. “When you were diagnosed,” she said, “my heart broke.” Your father’s mother died in her fifties of a heart attack from diabetes and just before it happened they were going to cut off her leg. All I could think was this would be your future.” I was shocked to hear her say this, both because it was a revelation and by the information itself. But now that I’ve addressed enough audiences where diabetes is rampant in their families, I am grateful I didn’t know. 

Maybe if I had known what happened to my grandmother, who died before I was born, I would not have believed I could be as healthy as I am. Maybe I would have believed my grandmother’s fate would be my own, as so many people with diabetes similarly believe. Maybe not knowing allowed me to manage my diabetes and expect that if I did it well I’d be well. In fact, I believe diabetes can be a great stimulus to creating a healthier and happier life rather than falling victim to it and all the negative messages around diabetes. But maybe I would have been derailed on my way to these thoughts if I’d known what happened to my grandmother. 

I am pretty healthy after 35 years living with type 1 diabetes and I am resolute that I will continue to control what I can to have the best health that I can. It’s never been a secret to me that we create what we expect. Truth be told, that’s the good news and the bad. If you catch your thoughts more often and plant the ones you want to sow, I believe you can weight your fate for the better. Ah, see, I am teaching people just what I thought I would so many years ago.


 

The diabetes connection in down under Queenstown

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Two stories to wrap up New Zealand as our stay here has ended and we’re on to Sydney.

1. The wool story: After days of walking in and out of shops that sell fine Merino wool, a native staple, I was in yet another shop eyeing these beautiful sweaters, gloves and hats with envy for, alas, I am allergic to one thing in the world– wool. Yet, I could not help admiring these products’ beauty. And so I said, plaintively, to the saleswoman, “It’s funny, I feel like a diabetic in a candy store, I am surrounded by these beautiful wool products and I am allergic to wool.” She looked at me curiously and said, “Really, diabetics are allergic to wool?” Of course that was not at all how I meant it. When I recounted this story to the husband, we laughed and agreed I now had a new myth for the sequel to my soon-to-be-published 50 Diabetes Myths book, “Diabetics can’t wear wool.” 

2. The unexpected encounter: Midway during our stay in Queenstown we switched from a business hotel to a Bed and Breakfast. Over breakfast our first day I heard an American accent. Steve from Rochester, Minnesota was sharing how his rental cell phone went off at 5 A. M. that morning and it was a wrong number! That’s all the ice breaker I needed to begin the usual, “Where are you from?” “How long will you be in NZ?” As the conversation wound down from sightseeing, politics and the global economic meltdown, I mention that I just finished writing a book on diabetes myths. Steve’s wife’s face, Julie, lights up. She tells us that she has type 2 diabetes. Well, that is not all that surprising for a middle aged, slightly overweight American woman, but what is surprising, and stirs an engaging conversation, is that she is working with the famed Mayo Clinic as part of a research focus group on behavioral methods for helping patients manage their diabetes. 

She begins to talk about what I have learned through the more than 100 patients I’ve interviewed: you need to understand the context of patients’ lives to help them change behavior. She recants a wonderful story of one elderly patient who tells his doctor that he wants to be put on Byetta. His doctor who would never have thought this man would chose an injectible drug (and so wouldn’t have offered it), asks his patient why he wants Byetta. His patient tells him he is soon going into an assisted living home and he wants to lose a few pounds because he hears there are a lot of available women there! [Byetta helps most patients lose weight as well as control their blood sugar.] We laughed, and we understood what few doctors do: all our choices are embedded in the context of our lives.

Julie shares about herself that after being in denial for some time after her diagnosis, she took some diabetes classes and lost weight and significantly lowered her A1c. My husband asks what her A1c is and she lights up again and tells us, “5.7!” The husband says, “You must be very proud” whereupon Julie says with both elation and sadness, “Yes, I am and I want to tell people but who would understand?!” My belief that you can experience pride because of how you live with diabetes and it can motivate you to continue to do well is confirmed, and the husband whisks upstairs and returns with two of my books, The ABCs of Loving Yourself with Diabetes, in hand for Julie. We witness a smile quickly spread across her face as she skims through the book and she volunteers that as soon as she’s home one of these books will be at the Mayo clinic. It is like an angel named Julie has sat at my breakfast table in Queenstown.

I keep saying (to anyone who will listen) the universe is continually supporting my work by throwing gems at my feet, but that morning it was Steve who said, “This is so amazing. We weren’t intending to stay here but our travel agent “stuck” us here for three days, and look what’s happened.” 

I agree Steve. And so we fly out of Queenstown taking with us the beautiful scenery, rich new memories and new bonds that were woven that morning.

 

Diabetes news from New Zealand

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Well, here I am in Lord of the Ringscountry — Queenstown, New Zealand to be exact, where much of the scenic movie was shot. Exceedingly nice to be here if you don’t count the 24 hours in the air and five hours on the ground it took to arrive. This is a working vacation: time to play, sightsee, visit friends as the husband and I go from here to Sydney, Singapore, Tokyo and San Francisco, and I’ll be meeting up with some folks at JDRF and Diabetes Australia and possibly do a presentation at a hospital in Singapore.

The first picture posted here is from the wharf on our first rainy day. The second, exhibits something that took me by complete surprise on my Qantas flight from Los Angeles to Auckland, NZ. A compartment in the bathroom where you can dispose of your needles. I have never seen this before, and I’ve been around, on airplanes, I mean. 

I was intrigued–is it for diabetics? Anyone with a medical condition? Drug addicts?  I asked the stewardess while deplaning. She looked at me quizzically, her facial features almost saying, “What accusation are you making asking what our disposable needle bin is for?” Was it my New York accent? As I read her face, I geared up to offer just how much I enjoyed seeing the bin because I have diabetes, but before I uttered a word, she said, “diabetes,” and then I told her I have it. She warmed immediately. I told her I’d never seen such a bin on any other airline whereupon she told me it’s standard on all Qantas flights, imagine that! What also happened seeing this bin was an internal shift: I felt free, as though I just stopped holding my breath, not even knowing I had been holding it for the past thirty years. I felt acknowledged and accepted, as if I’d just been picked for the volleyball team and everyone was cheering. I could come out of the closet now, at least  out of this bathroom, without fear of judgment; it was an immediate, rich, sensory feeling.

I have another tidbit to offer re: flying and adjusting your insulin to cover time zone changes, which I am really typically horrible at.  I read about this tactic before leaving home and it worked in this instance.  Since once I landed in Auckland it would be four hours past my usual once daily morning Lantus injection, which I take around 7:30 AM in NYC, I took 1/4 of the amount I normally do when it hit 7:30 AM NYC time (my watch still being on NYC time during the flight.) Once we landed in Auckland it coincidentally was early morning and then I took my full amount of Lantus getting right on local time for my injections. It worked like a charm! But that’s all I can offer because I always struggle with how to dose for different time zones. My usual methodology is just test every few hours and catch up with correction doses until I’m about into the third day of travel.

As I sign off this morning surrounded outside my hotel window by majestic peaks, luckily today the sun is shining over them–I am in the same room number as my street address. The husband thought this was remarkable ingenuity on the part of the hotel, to match guests to rooms that replicate their address. I, of course, thought that would be nearly impossible. When we asked at reception, the concierge told us it was a very inventive idea but no it was not something they do. So, since it’s kismet, I’m taking it as a very good sign for the rest of our travels which I will post as we proceed.