A 40-year journey with type 1 diabetes

riva at 20

That’s me, of course. Probably in my early twenties, just a few years after getting diabetes at the age of 18. This month is my 40th year with diabetes. I can’t say if I ever thought I’d reach this point: I don’t think I ever really considered it. I did think, however, how in the world will I read the little lines on my syringe when I’m old? Luckily at 58, I still have my eyesight. And better yet, I don’t think I’m old, yet!

I wrote about my journey to here on the Huffington Post. Maybe another reflection when I hit 50 years!

A thriving diabetes community in Portland that welcomed me

Screen Shot 2015-02-07 at 3.51.09 PMIt’s not often in life we meet people whom we feel so in tune with, but when it happens I really, really treasure it. Not surprisingly, many of my diabetes colleagues, friends and acquaintances I meet initially through email. The best is when we actually get to then meet face-to-face – and this week that happened. Two of my email friendships got consummatedshall we say ;-). 

I’d like to introduce you to Heather Clute and Jeff Horacek, tell you what makes them amazing, and share a bit of my week. 

Heather is a wellness counselor and coach and has had type 1 diabetes for 14 years since the age of 27. Jeff is an internist and some roads in his personal life led him to run Portland’s diabetes support group. Jeff is the kind of doctor who credits his patients for his deep understanding of what it’s like to live with diabetes. I know because he’s said it more than once including at his diabetes support group this week.

Both Heather and Jeff also co-host the online radio podcast“Transforming Diabetes” where their interviews with diabetes experts help us transform diabetes from foe to friend. The link above takes you to the program we recorded while I was in studio. We call it ‘getting real with riva’ but it’s really three people sharing what it’s like to live with diabetes and what we’ve all learned along the way. 

I went to Portland to give an A1c Champion presentation to Jeff’s support group and I arrived a few days early to get to know my hosts. And I do mean hosts. Heather hosted me in her home for two days. And besides enjoying her hospitality, and the drive to the second largest waterfall in America, and the walk in the Japanese Garden – which transported me to my days living in Japan – what I also got to see and appreciate is what it’s like to manage type 1 diabetes when you’re also managing three littles ones, two aged 6, one age 8. Cute as buttons they are, yet your time is their time. I saw how many more challenges there are in that setting than my own where I have no one vying for my attention, where diabetes is my only child so to speak. And that’s just the kind of stuff we talked about on our in-studio Transforming Diabetes program.

The evening before my A1c Champion presentation to Jeff’s support group, Heather and Jeff invited two other professionals from the Portland diabetes community to join us for dinner – endocrinologist Elizabeth Stephens and RN, CDE Susanna Reiner. We had a great evening sharing tapas and conversation. I learned from Susanna, who’s heavily pursuing gluten free cooking, about substituting almond meal for flour, which I plan to do in my next batch of chocolate/ginger biscotti which my husband loves. 

The night I delivered my presentation I did something I’ve never done before. Before I began, I led the group through a mindfulness exercise to ground everyone about why they’d come and have them remind themselves what they hoped to get out of the evening, and to be present. I thought to do it because every time I look at Heather or Jeff I think mindfulness – they are working on a program they hope to offer next year that will revolve around mindfulness and diabetes management. 

Maybe this is just my way of saying “thank you” to my hosts. To take a few moments to appreciate how special my time in Portland was and how special it is when people walk into our lives who make us feel validated, important and seen. When you wrap that around diabetes, that’s quite a gift.

In a way there is nothing amazing about Heather and Jeff, they are just two people living their lives and doing what they love. And in the doing they are brightening a little corner of their own, and our, lives. They are, as are so many, the unsung heroes in diabetes, and all our unsung heroes are pretty amazing in my book. 

Independence Day can also mark diabetes-independence

Becoming more self-sufficient


 As we gather over the grill with family and friends, hoist a few or compete in the hot dog eating contest on Coney Island’s boardwalk, I’m also thinking about how we move toward greater independence living with diabetes.

I shared the article below about the value of peer-mentoring with Mr. Teng Liak, the awe-inspiring, forward-thinking CEO of the new outstanding hospital in Singapore, Khoo Teck Puat Hospital, where I visited in May. 

Mr. Liak wrote back, “The world has completely changed under us. For the first time in human history, good quality information and knowledge is available 24/7 for free to everyone. We, the so called “experts,” no longer have the monopoly to knowledge. Great big headache for those living in the past. Great opportunities and relief for those willing to take full advantage of the changed environment.”

I couldn’t agree more. It’s also an opportunity to health care providers to babysit their patients less and patients to take treatment into their own hands, as HCPs recognize their patients as experts – on their condition, particularly if chronic, and their life, and as patients realize their responsibility in their treatment. That to me is diabetes-independence. Those who participated in the peer-mentoring study below, joined with a fellow patient trained to help them, and then became more able to help themselves. Again, independence.

A crucial key to independent living with diabetes is continued learning. In support of that I’m off this week to Children With Diabetes’ annual conference ‘Friends for Life.’ I’m giving three programs – one on flourishing with Diabetes, another on inspired Diabetes Self-Management and another on tools to live our best life.  is at the biggest gathering of parents of children with type 1 diabetes, and this year for the first time, type 1 adults. 

When I went in 2007 it was enough for me to just walk the halls and help parents frightened for their children see that they can grow up and have healthy, happy – independent – lives. I’m looking forward to that again.

I also love that Friends for Life is a unique and charged environment for friendship, support and learning, and that we get to gather and hang awhile with those who “get it” and then go off – often with friendships that last a lifetime – and though them stronger than before.


Beeping in the Bible Belt


I knew last year when I went on a ya ya sisterhood trip through Mississippi that in much of the South life revolves around church and college football.

Two weeks ago I re-entered that world while visiting my good friend P. P lives in Dallas and is very active in local missions and her Methodist church.

She asked if I didn’t mind accompanying her to her Sunday morning bible class and the sermon that followed. I didn’t mind at all, in fact I enjoy learning about other faiths. So there I was, sitting amongst 20 women while they were discussing Jesus and the meaning of Christmas, and my blood sugar was sliding into dangerous territory. 

I unhooked my meter from my pouch as discretely as I could and discovered  I was 56 mg/dl. I slid a few glucose tablets out of their sleeve and into my mouth, hoping no one would think me impolite for not offering them around. Thirty minutes later, still in class, my heart was now fluttering and sweat was beginning to accrue on my brow. 

Still trying not to attract attention, funny to say being the lone Jew in a barrel full of Methodists, I took the last bite of a peanut butter cookie still in my coat pocket left over from some previous incident. My friend, having type 1 diabetes herself, whispered, “Are you OK”? I assured her, in between the debate whether one should send “Merry Christmas” cards or “Season’s Greetings” cards, that I would be. 

When class ended we walked through the very large, very active church to take seats for the morning sermon in a very large hall. As soon as we sat down, P looked at her CGM and saw she was 70 mg/dl. She began beeping (well her CGM did) as I fished in my coat pocket to retrieve the half a trail bar I’d noticed was there while pulling out my peanut butter cookie dregs. 

We bickered for a few seconds whether she should eat my last batch of sustainable-carbs. I insisted. She did. And as 500 worshippers hushed as the minister strode to the podium, we did all we could to bury our bonded giggles over just another morning with diabetes. 

Wednesday’s child is full of woe

DSC00099My parents, still a lot to be thankful for

I was born on a Wednesday and I hope it went better than today’s going. The weather’s pretty crummy and I seem to be under it. 

It’s storming outside, a grey and chilly prelude to winter and inside I woke up with a cold this morning and a sore throat. This just after thanking my lucky stars yesterday that I wasn’t sick because I’m taking off for Dallas tomorrow to spend time with a friend and see her environs for the first time. That includes meeting people and seeming perky.

Then on top of the cold and sore throat I managed to take a piece of my finger off yesterday shutting my tool box. Being a closet handygirl, obviously not so handy, I wrenched my finger out of the hard plastic tool box when it slammed on it, and managed to leave a bit there. The bleeding’s stopped, but I can barely bear to look at it under the band-aid. 

So heading to the airport tomorrow there’ll be slightly less of me (skin on finger) and slightly more of me (stuffed head). It’s times like these I think: Isn’t diabetes enough? And it’s times like this I try to tell myself, I still have so much to be thankful for – family, friends, work, home, hobbies (will have to rethink that one). 

After all, tomorrow will be Thursday and Thursday’s child has far to go which makes perfect sense since I’ll be going to Dallas and then it will be Friday and  Friday’s child is loving and giving. I think I’ll stop while I’m ahead.


My Lantus experiment

I’ve written about this before but it’s driving me mad. I can’t seem to stop my blood sugar from skyrocketing early in the morning. Yes, I know about the “dawn phenomenon” and growth hormones being released in my body between 5 and 7 AM to get me ready for the day shooting glucose into my blood. 

It’s all well and good to tell me I’ve got a sound growth hormone system. But it’s not good that I have to jump out of bed by 6:30 AM, weekday and weekend, to blunt the BS rise with  rapid-acting insulin.

So, going on the theory that my Lantus isn’t giving me a full 24 hours coverage, as is true for many people, I have been experimenting:

1. first I switched from taking my dose in the morning to before bed. Beside the fact that I hate the thought of having to take one more shot before going to sleep, especially those nights when I fall asleep by 10 PM on the couch, it didn’t seem to help.

2. it was recommended to me that I split my dose and take one injection in the morning and one in the evening. That put me on such an unpredictable curve of highs and lows and not knowing how and what to prepare for that this idea didn’t last long. 

3. My last attempt, recommended by an endo who’s ear I caught while in Bangor, Maine giving a presentation, told me to take most of my dose in the morning and 1/4 of it after dinner to give an extra flood of Lantus to stand up to those pesky growth hormones. Obviously, 3 units of Lantus didn’t consider themselves a flood and once again were overwhelmed by sneaky glucose combat fighters. Or that’s how I visualize it.

I’m up to my last experiment. I’m taking one injection of Lantus around lunchtime. If my Lantus really is petering out in 21 or so hours, if I take it around noon or 1 PM, I should think I’d at least get enough efficiacy out of it so I wouldn’t have to blunt a rise until perhaps 8 AM. And finally get some sleep.

I don’t know yet if this is working. I just started and I’m giving it a week as my endo told me to give most changes. What a pain. 

This is the single reason I would switch to a pump, but then with all the furor over pat downs at the airport pumps are looking less convenient than more.

My results of the Big Blue Test in numbers, and not

Saturday night at 5:46 PM Eastern Time we crossed the finish line to 100,396 views of the Big Blue Test video! It was really exciting to watch the tally rise all day knowing victory was in sight – and trying to figure out just the moment we’d cross the finish line.

Thank you for watching the video and passing it on. Roche’s donation of $75,000 to children in need will save thousands of children’s lives.

I hope you also participated in the bigbluetest yesterday and uploaded your results at bigbluetest.org. You can see the mean average results there. And you can still upload your results this week.

I was so eager to see the effect of 14 minutes of brisk walking on my blood sugar that I did the test twice. To be honest I did it on Saturday as I knew Sunday I wouldn’t be able to.

I did my usual brisk walk but instead of walking around my local park I walked through a nearby Orthodox neighborhood. 

I did my first test at 10 AM. My blood sugar was 90 mg/dl (yes, I know, a little low for the test, but I had my glucose tabs with me…). After 14 minutes of walking I was at 72. Then came the glucose tablets. I did the test again at the bona fide time, 2 PM, and my blood sugar went from 149 mg/dl to 129. Even I was surprised how just that small amount of brisk walking, both times lowered me 18-20 points. 

I got another benefit, as I always do, from my hour-long power walks. In addition to lowering my blood sugar and keeping me insulin-sensitive, my walks are a time for me to get quiet, to hear my thoughts and just be still while being outside. Saturday, when I did my tests, it was the Sabbath and so the neighborhood I walked through was quiet. The shops were all closed, men and boys were strolling on the streets headed to synogogue. No one spoke loudly. Families gathered. There was a reverence for family, for the day, for our surroundings and it brought back quiet Sundays of my youth growing up in the Bronx and taking walks with my father. I found the quiet joy of the stillness as impactful as my lowered blood sugar.

If you didn’t take the test yesterday, take it today, or sometime this week. See for yourself the effect of 14 minutes of activity on your blood sugar. And, see if it isn’t also a time to be still in a crazy world.

Just remember while 14 minutes of activity lowers blood sugar, if you’re low before you go, like under 100 mg/dl (5.5 mmol/l) you’ll probably want to bring it up before you walk, run, swim or prune the rose bushes. 

My first 6 thoughts about diabetes


6th annual blog day

I’m taking today away from my main message till November 14, World Diabetes Day – watch the Big Blue Test to learn about the importance of exercise managing diabetes, and to get life-saving supplies to children with diabetes in need – in order to participate in Gina Capone’s 6th Annual D-Blog Day. 

Our blogging mission – Write the 6 things I want people to know about diabetes. There are so many but these came to mind and they’re in no particular order:

1.Diabetes is a second job, one I’ve had for almost 40 years and much as I’d like to, I don’t plan to ever retire

2.Diabetes requires I do something every day, almost every hour, that’s invisible. 

   Spend an inordinate amount of time examining and dissecting food

   Calculate carbs

   Run carb:insulin algorithms in my head

   Wonder where to fit my walk into the day 

   Conceptualize my next meal

An endo said “ordinary” people think about food 9 times a day. Diabetics, 250 times a day. That sounds about right.

3.Diabetes has made me better – healthier, more purposeful and given me a ton of great friends and acquaintances 

4.Diabetes affects my husband who very privately worries about me. After all, he’s sitting in the passenger seat while I’m driving. And while I’m a good driver, there are other cars on the road I can’t control.

5.Tons more people will get diabetes before we ever cure it

6.It’s preventable. If type 2 is in your family, get tested. You don’t have to be overweight to get type 2 diabetes. If type 1 is in your family get your kids screened. 

More “6 things” from my fellow bloggers here.

The battery mishap that reminded me I’m only human

You know if you’ve read the post below that I am not exactly tech-savvy. Well what happened to me this morning is almost embarrassing to reveal, but what the heck. In the name of diabetes it may offer you some solace.

A month ago I cancelled an interview I was going to do with a patient, as I continue to collect all our stories of living with diabetes. I cancelled because my tape recorder didn’t work. Kaput! When I pressed the on button, nothing went on. I am reliant on it to record, and although there are 2 other recorders in the house, I don’t know how to use them.

I was disappointed I had to postpone the interview, and even worse, felt bad that someone had set aside time for me and I had to reschedule. Of course she was very kind and we rescheduled for four weeks later – after my husband would be back from Holland to fix the recorder or help me work one of the others in the house. You know I’ve heard of couples becoming co-dependent and in the past actually felt sorry for them. Yep, here I am.

So this morning I pulled out the recorder and showed my husband how when you press the power button nothing happens. Then I handed it to him. He began to look at it when he remarked, “It’s awfully light. Are you sure there are batteries in here?”

I lifted the battery cover to discover, to my dismay, there weren’t. He laughed like a hyena. His six foot, 128 pound frame shook from head to toe. I immediately pulled two batteries out of the drawer, put them in the recorder, and presto, it powered on. I’m sure what happened was the last time I used the recorder I pulled the battery cover off to take out the memory stick, took out the batteries as well that were likely running low, got distracted with any of a million things, came back to the recorder and forgetting I was going to change the batteries, closed the empty battery tray and put the recorder away.

I disclose my error, foolishness, absentmindedness, laugh-inducing mishap for one reason. Since life has become so increasingly fast, busy, frantic, chaotic, multi-task-demanding, haven’t we all noticed some lapses and spells of absent-mindedness? Now ponder: how are we expected to perfectly fulfill the multiple and constant requirements of good diabetes management? 

Just to name a few:

planning meals

counting carbs

taking your medicine, if on insulin calculating your dose before each meal and post meals for corrections

checking your blood sugar x times a day and deciding what to do about the numbers

deciding whether it’s safe to exercise, grab some glucose tabs or wait an hour

seeing your team of doctors

getting your lab work done

shopping for healthy food

preparing healthy meals

managing the tightrope between highs and lows

packing and carrying your supplies everywhere

always having fast acting carbohydrate on hand for a low

figuring out how to manage the time difference when you travel. I still haven’t cracked this one

explaining when people tell you you can’t eat something

explaining when people ask you to eat something they made just for you

hitting a rough spot, tough time, mysterious readings, burn-out and depression

knowing no one “gets it” who doesn’t have it

knowing it never lets up

knowing you have a responsibility each day to do your best, yet being human simple can’t always do it

wondering how that will impact your here and now and long term future

and on, and on, and on, day after day after day after day after week after month after year after year after year after decade after decade after decade.

Now tell me what we do every day isn’t miraculous. And I’ll tell you when you falter, it’s human nature, like forgetting to put the batteries in your recorder. 

When you notice you’re out of juice, just put your batteries back in, and turn the power button back on and let it be.

My vacation pledge – next time

HollandLondon 2010-37It’s almost cliché to say wherever you go, diabetes goes with you. But don’t we all wish diabetes would go on a vacation when we do? A separate vacation.

Just back from 12 days in Holland and London, it was a wonderful trip. Not a spot of rain and lots of time with friends and family. 

But then there’s that uninvited, omnipresent diabetes. 

There’s a reason why they call the Netherlands, “bread country.” Or maybe it’s just me who calls it that. Bread is everywhere, at every meal. I also call it “potato country.” 

Broodjes, Dutch for sandwiches abound. As do quaint little bread bakeries. And fries are considered a vegetable. Often the only vegetable that arrives at your table. So just when I thought I’d figured out how many units of Apidra to dose for a broodje with smoked salmon, my early morning breakfast at the airport’s Deli France, my blood sugar was 264 two hours later. Welcome to Amsterdam.

Then, unfortunately, while staying with acquaintances, as my husband and I did in London, I erred on the side of politeness rather being direct about what foods I prefer to eat and not eat to keep my blood sugar better controlled. 

So for five smashingly beautiful days in London I spent some time smashing my head against my own reserve not wanting to make my hosts feel uncomfortable with my own imposed food restrictions. That meant drinking orange juice for breakfast which I never do. Eating cold breakfast cereal loaded with carbs which I never do. I couldn’t help myself on the second evening combing through a dinner salad and removing all the raisins. I realized what it looked like when my husband opened his mouth to explain dried fruit raises my blood sugar. That understood by my hosts unfortunately did not translate into apple-laced mashed potatoes did too. 

Then, two days in a row there was the spontaneous 3 PM and 4 PM outing to the park for an endurance walk. The first day, I covered it retroactively with glucose tablets. The second, I gave in to half a chocolate cupcake minutes before the announcement. By visit’s end, I was no longer sweating from the unexpected power-walks, but the frustration of not being able to control my food, my environment and my routine. Diabetes, go somewhere else on vacation!

Lest you think I had a crummy time, far from it. There were gorgeous strolls in Kew Gardens and historic towns just outside of London, including a drop-in at the local pub. There was the evening seeing Les Miserable and exiting with the theatre throng onto fantastic Piccadilly Circus. And there was the party my husband threw for his mentor of 30 years. 

But, I was reminded how invaluable my routine is to the numbers I like to see on my meter and how crushed I am when I can’t predict, a wit, what numbers will show up. 

So I realize I need to come clean next time. Bust through my own reserve not to offend my very gracious hosts and share with them what menu options make my life easier. And I pledge that next time I will do exactly that.  

Home now, I can’t tell you how divine it is, although you probably can guess, to fill my morning breakfast bowl with steel cut oats, peanut butter and no-fat plain yogurt and my lunch and dinner plate with crunchy green vegetables. And thank goodness my better blood sugar numbers, while on vacation in London, have come back to Brooklyn with me.

While others feel routine takes the “spice” out of life, for me it allows me to put it everywhere else in-between my meals.