Independence Day can also mark diabetes-independence

Becoming more self-sufficient

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 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.


 

Hope Warshaw wants to help providers better understand what it’s like to live with diabetes

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Hope Warshaw, certified diabetes educator, registered dietitian and board member of the American Association of Diabetes Educators (AADE), has been dedicated to diabetes care for over 30 years and written numerous books

Hope and I had worked on some written material two years ago, but I first met Hope at last year’s AADE annual meeting where we broke bread over breakfast. I love her spunk and commitment to helping patients and providers work better together to improve care.

Hope put forth the idea of interviewing me for a post on her blog exploring this topic. I asked Hope if I could share, and she readily agreed. Here’s the article: 

Dialoging about Diabetes: PWDs Offer Ways to Improve Communication and Care – #1 Riva Greenberg

As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of online diabetes social networks is helping people with diabetes (PWD) find and give support and feel supported. People are connecting, building relationships and feeling more positive about their diabetes. I’m delighted to see this trend!

As a DHCP I’ve long realized I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to help shift the dialog between providers and PWD to be more positive and supportive.

In my Dialoging about Diabetes blogs I’ll interview diabetes activists and social networkers. I ask them to offer us DHCPs ways to alter what we do and say to better support your diabetes care efforts and make living your real life…just a bit easier.

Two more goals: Help more PWD get connected and encourage more DHCPs to open the doors of social networking to PWD.

This first Dialoging about Diabetes interview is with Riva Greenberg. Greenberg describes herself as: a person with type 1 diabetes for 39 years, a patient advocate, diabetes book author,blogger for Huffington Post health coach and speaker. To learn more about Riva Greenberg check out her website.

HW Q: If you could give DHCPs tips to improve our understanding of the challenges PWD face in managing diabetes while living their real life, what would you tell them?
RG A: My basic tip is for HCPs to ask their patients more questions. Then listen with focused attention. It is by hearing what is going on for this person that you will understand the challenges managing diabetes presents as a whole, and specifically. People, when given an opportunity to share, are a treasure trove of information about what and where they need help as well as what they’re capable of and willing to do.
Greenberg offers DCHPs these thoughts:

  1. Start off looking for successes: “What has gone well for you since we last met?” Offer congratulations for any positive self-care action.
  2. Next, ask: “What have you found difficult?,” “What would you like to do better?” The answers will reveal the person’s challenges as well as opportunities for improvement.
  3. To assess a person’s support network, ask: “Who are the people who help and support you with your diabetes?,” “How do they help you?,” “How else would you like to be helped?”
  4. Ask questions that explore the person’s life beyond diabetes: family life, job, school, finances. A person’s actions are all rooted in their life systems. Try to understand a person’s challenges within the whole context of his/her life.

And Greenberg reminds us: Don’t forget the follow up questions to obtain a deeper understanding. Probing questions will begin to reveal how a person manages their diabetes amid managing his/her life. A goal is to make this as seamless and integrated as possible.

HW Q: How do the day to day challenges of managing diabetes impact one’s ability to manage diabetes?
RG A:
 Given how busy we all are these days, life just gets in the way sometimes of doing great managing diabetes. Just last week I was having my bathroom renovated, was fighting a bad cold and had to vacate overnight since I had no toilet! Rushing out the door to my friend’s house I discovered when I got there that I forgot my insulin! This happens to me once every few years. If, however, you’re going through a particularly stressful time, like a divorce or a job loss, you can be sure it will be tougher to complete your diabetes to dos and the stress will interfere with your management and your blood sugar control. Since life will always throw challenges our way, the best way to stay healthy is to know how to manage diabetes and have ways to get through the tough times. It might be doing yoga, exercise, spending more time doing a hobby you love or with friends or family or a writing exercise about what you’re grateful for or using positive self-talk.

HW Q: How can DHCPs be more empathetic, understanding?
RG A: 
This is a great question and very much at the heart of the DHCP:PWD relationship. Many HCPs operate from a traditional “expert-model:” I’m the expert and I’ll tell you what to do. But unless the patient identifies why a change or action is meaningful for them to do, they won’t have much motivation and the change won’t last very long. DHCPs should aim to explore who their patients are, what’s important to them and what they’re willing and able to do. It should be a collaborative effort then to determine actions and goals. If the DHCP takes this approach, empathetic understanding will increase automatically.

HW Q: What messages do you have for PWDs about more actively communicating what they need from their DHCPs? 
RG A: Become more knowledgeable about diabetes: read a book, magazine, and web sites. Bring any questions your have on a piece of paper to your DHCP and write down the answer. Ask about any concerns you have, this may be about yourself or your family, they’re also affected. When your DHCP tells you something ask for clarification if you don’t fully understand. Don’t leave confused or not knowing what to do or why.

HW Q: How do you feel that social networking/being connected online can help people feel supported, possibly improve their care?  
RG A: Only someone with diabetes can know what it’s like to live with from the inside-out. Social networking has given people an incredible resource to share our knowledge, our woes and our successes and they provide support. When living with a chronic illness, support is like medicine.

HW Q: How do you encourage DHCPs to see social networking as an advantage to their efforts and an avenue for PWD to get increased support? 
RG A: Web sites can’t replace the face-to-face interaction with a trained provider. The more knowledgeable people become using social media, the better they may be able to deal with/manage their diabetes which can make a DHCPs job easier. Also, since providers are so short of time, a patient may actually become an expert on something their DHCP may not be and the information flow can go from patient to provider. I talk about this in one of my Huffington Posts, “Are Doctors Losing Their Relevance Due to Social Media Health Sites?”.

Greenberg’s parting comment: Since diabetes will require we have a relationship with our health care providers on a regular basis for the rest of our lives, striving to have one that’s collaborative and rewarding is to everyone’s benefit. If we can work better with our providers it’s one less stress and one more tool in our toolbox.

Thanks for sharing Riva!

Beeping in the Bible Belt

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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. 

Life is the way we see it – and make it

imagesGinger Viera brightening a corner of the world

Funny that my last post said I was full of woe (well, that happens occasionally.) By the way, I am over it, and here it is another Wednesday, yet I feel on the mend and full of possibility.  I’d like to share a post with you I just read that captures that knowingness of possibility, and my own feelings most of the time. 

It’s written by my fellow diabetes blogger, Ginger Viera, “Contagious, Confidence, Endless Possibilities.”Ginger is a fellow type 1, a weight lifter, personal trainer and health coach. 

She writes honestly about the failings we all feel we have and the will and way not to let them foil us, but to find our strength to carry on and see the best for ourselves whether with diabetes, or just in our lives in general. 

An excerpt

“Don’t let anyone tell you that you can’t do something.” My twin brother, Pete, said this to me several months ago. I wrote it down on an index card and taped it to my bathroom mirror. Funny thing is, it’s never been other people telling me I can or cannot do something. The loudest voice I hear is my own.

When I was diagnosed with Type 1 diabetes in the seventh grade over eleven years ago, the first list that ran through my head was the list of things I probably couldn’t do anymore. I couldn’t eat ice cream without first counting the grams of carbohydrates in the bowl and determining how much insulin I needed. I couldn’t play basketball anymore (at least, that’s what I thought). I couldn’t buy candy and popcorn with my friends when we go to the movies without feeling overwhelmingly guilty about eating such diabetic-off-limits food. The list of foods, activities, dreams and goals I thought were off-limits seemed endless.

With or without diabetes, we allow ourselves to fill our minds with everything we’re sure we cannot do, or cannot have, or cannot ever become. As I grew older, I realized how many things were still within my reach. I used to think I could never become much of an athlete, but today, I’m a health coach, personal trainer, yoga instructor and I’ve set 15 records in drug-tested powerlifting. Clearly, what I needed at my diagnosis, and simply as a young girl growing up in this society, was someone or something to help me learn that my dreams were all still possibilities.”

You’ll want to read the full article at the link above. Thanks Ginger.

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

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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.