Living with diabetes

“Hey Doc, my diabetes is stealing my sleep!”

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It occurred to me the other morning when my husband woke me at 7:03 AM that diabetes is stealing my sleep.

Celebrate the gift you are

No, not because I worry about complications. Not because I wake in the middle of the night with a low. Not because I wake through the night to pee. No, because I have to wake up early enough to blunt the rise of my blood sugar in the early morning. That pesky “Dawn Phenomena,” where the liver throws sugar into your bloodstream to get you ready for the day, is the bane of my existence. With MDI I have no insulin on board to not rise. My 24-hour long-acting insulin doesn’t go the stretch.

Since I got a CGM, it’s on the hush-hush but “Pinkie”, my beloved Dexcom receiver, doesn’t sleep with me. I know, I know, the whole point of a CGM is to wake me in the middle of the night if my blood sugar goes too low.

But this is what I know after many data collections of what my blood sugar does overnight. It typically drops to 55 mg/dl and then starts coming up. It’s just my pattern. Trust me, I’ve asked several CDEs about this and pretty much get the response, “That’s just what your body does.”

So I don’t need Pinkie to alert me and I don’t want Pinkie disturbing my sleep. So she sleeps in the living room in the top drawer of my tansu in my checkbook box. C’mon, she’s very comfy cozy there and if she peeps, we don’t hear it.

That said, my husband the early riser, has orders to check Pinkie for my number at 7 AM and if she’s barreling up beyond 100 mg/dl, he’s been instructed to wake me so I can take my first shot of rapid acting insulin to blunt the rise.

That’s how I found myself awakened the other day from a deep, deep sleep. Now that I think about it, the dream I was immersed in was about two old friends…hmmm…let’s just say it was just as well I was awakened.

My husband told me it pained him to wake me. He walked into the room, turned on the light, stood over me for minutes with no response on my part and then began lightly stroking my arm.

And so I thought later that day I have an illness that disturbs my sleep and makes my husband sad he has to wake me when we keep hearing that sleep is a health necessity and predictor.

So here’s my happy dream – when longer-acting insulins arrive I’ll be able to make up for years of sleep deprivation.

No to resolutions, yes to more laughter

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I never make new years resolutions. What I want to do I’ll do, what I don’t I won’t. Why set yourself up for failure. Although I did tell my husband let’s resolve to laugh more this year. And that appeals to both of us.

So, in keeping with my non-resolution, here’s all you need to have a good laugh. You may have heard of the marshmallow experiment. Researchers took a number of four year olds and gave them each 1 marshmallow. They were told if they waited until the researcher returned to eat it, they would get a second marshmallow.

Next time you’re dying for that cookie or piece of cake and wresting with yourself whether or not to have it, remember the look on these kids’ faces and the stalwart winner at the end!

Among the bulk fruits at Costco – me!

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A week ago I got an email from the publisher of Costco’s website for diabetes health information and care. “Would you guest post for us? We’ve become a popular site for our Costco customers.”

Sure. So here’s to sharing with the Costco community – love those big jars of artichokes and cheap Charmin –  what it takes to be healthy with diabetes 42 years – including two secrets you’ll rarely hear. 

For the article, click here.

This is Type 1 diabetes, high and low blood sugars

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This was on Facebook. This is not my Dexcom, but it could be. What struck me is how so many of us are compelled to put our numbers up and share them looking for comfort, camaraderie and someone else who “gets it.” For when it comes to getting it, I believe much of the health care community is in denial. 

We cannot “control” blood sugars in people with diabetes who use insulin. That’s everyone with type 1 and some with type 2. But that frustrates health professionals; after all their job is to cure us, short of that to fix the problem – our up and down blood sugars. 

But that is the very nature of diabetes – fluctuating blood sugars. And even with 24/7 oversight, no matter how hard I work at it, trying to do what a normal functioning pancreas does, I fail. My brain simply cannot replace a normal functioning pancreas.

I wrote about this recently on The Huffington Post in “Type 1 Diabetes Fully Explained.” It went viral in hours. Hundreds of fellow Type 1s wrote to me saying how I had perfectly captured how impossible it is to perfectly control type 1 diabetes. 

It is time for us to agree that the norm of diabetes, intrinsically, its very nature is up and down blood sugars, especially for T1D and insulin-dependent T2s. 

It is time to accept this and stop trying to fight it and control it. I hate that word control. This doesn’t mean that we shouldn’t work at having blood sugars as often as possible in our target range, but let’s agree it’s hard and let’s agree we can’t be perfect at this and let’s sigh a collective sigh of relief. We deserve it.

Furthermore, creating goals is the wrong way to manage diabetes. Goals reinforce the idea that if we only work harder we can lick this beast. But we can’t. Goals reinforce that there is a perfect standard and we just aren’t working hard enough if we haven’t achieved it. 

Rather, what we should learn is what to do with our numbers in the moment, keep breathing, and have the knowledge and no self-blame to do it – and then smile because we did something good for ourselves.

Funny thing, but given that blood sugars fluctuate all day and all night, we are much better off to befriend our efforts, both strong and weak, and behead the doctor who tells us our numbers “should” be better.

I want people with diabetes to hear from their health professional:

“This is tough. You have a condition that requires a lot of work and vigilance. Some days you’ll do better than others. Don’t beat yourself up, instead do your best as often as you can and know that the very nature of diabetes is up and down blood sugars. You cannot do this perfectly because your body will be doing something unpredictable a good deal of the time. Just know this, accept this and keep breathing. I for one honor what you do living with this everyday.” 

The antidote to living with diabetes

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As Diabetes Month closes, this is the title of my latest article on The Huffington Post. I believe it with all my heart and so want to share it with you perhaps as an early Thanksgiving gift.

“…for me, having lived with Type 1 diabetes almost 42 years and with no end in sight, I have to find hope somewhere. So I take it in the attitude I’ve adopted: You can have a great life, not despite but because of diabetes.

Don’t get me wrong: I am not denying the work, the hardship and the fears diabetes brings or it’s potentially damaging consequences. I am suggesting what Randy Pausch told us in his “Last Lecture” and what Michael J. Fox has been telling us since he got Parkinson’s. That you can make meaning from tragedy and find not just a way to bear it, but joy in a meaningful life.

I have used diabetes as a catalyst to create a purposeful life: to become fitter, stronger, more compassionate, passionate, bolder, less fearful and help others. Many others have told me the same.”

To read the full article click here.

Phoenix airport syringe disposal and shooting up

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It’s kind of a double-edged sword when we get to see something just for us. Nice, and an unfortunate reminder. But I was glad to see this syringe disposal nestled in the bathroom of the Phoenix airport. I didn’t bother to think, whose syringes are they targeting? I just enjoyed the fact that maybe there’s some recognition for those of us using insulin.

I try to take my insulin discretely, meaning I don’t flaunt it in front of anyone. After all, I don’t particularly love watching others inject. But I never try to hide when I need to give myself a shot. And, I often wonder – where are all my fellow insulin users? I never seem to see anyone else “shooting up.” 

But I do it in the open as I like to think of it as a ‘teachable moment.’ So while seated on the plane, waiting for the last few passengers to take their seats, I took out my Lantus Solo star pen trying to inject before the last passenger arrived to take his seat next to me. And there I was, pen in stomach, when my husband leaned over and said, “Are you OK?” I looked up and there was my seat mate standing at our row waiting to take his seat. I finished, extracted pen from body, and in he came without a word, as if he hadn’t just watched this woman take a needle out of her body.

Later, my husband told me he had asked the gentleman if he could just wait a moment while I finished giving myself my insulin injection. The gentleman politely nodded. My husband also remarked that, the stewardess standing not far away, caught my husband’s eye and smiled. Comraderie? Knowingness? Compassion? 

I will never know, but maybe one or two more people were reminded that diabetes exists in the world, as so do those of us who live with it.

 

Dear Santa, won’t you please take this diabetes away?

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You may have seen this before as I’ve decided I will repost this every Christmas, because, frankly, fun is healing. And if you’re stuck with diabetes, you need as many laughs as you can get!

Dear Santa,

All I’d like this Christmas is for you to take this diabetes away. I’m so tired of it already. All the time stabbing my fingers for blood and guessing when my sugar’s too high or too low.

Now that I’m in menopause I can barely tell whether I’m sweating because I’m losing estrogen or because my blood sugar’s crashing at 50 mg/dl!

And, can we talk… I mean the constant figuring out how many carbs are in a ravioli or bread stick or that fried calamari that will be at the company Christmas party. Some days I just want to lie down and shoot myself. Please, please, Santa, would you take this diabetes away?

Sincerely,
Riva

***
Dear Riva,

I’m very sorry you’re having a tough time during my favorite season. I only want people to be singing carols and drinking eggnog and feeling good cheer. Unfortunately, it says in my contract that I’m not allowed to interfere with life’s natural occurrences. So here’s my suggestion: although you’ve already opened your holiday gifts, go back and look under your Hanukkah bush for the gift in having diabetes.

You may have to spend a few days looking, so why don’t you schedule it for the week between Christmas and New Year’s while you have some down time? Then you can start the new year fresh.

Best wishes,
Santa and the gang

***
Dear Santa,

A gift in my diabetes? What are you, crazy? Meshuggah? Thanks, but no thanks!

Riva

***
Dear Rabbi,

I seek your wise counsel. I wrote to Santa to take away my diabetes, but he wasn’t helpful at all. Surely you who have studied the Torah and represent our people who have suffered throughout history can help me with this awful diabetes.

It’s such a strain, Rabbi. I have to test my blood sugar when I really want to be lighting the sabbath candles. I forgot all about the High Holy Days this year because I was so busy counting carbs in the Challah, bagels and honey cake.

Rabbi, please, what solace can you offer me? What words of wisdom? Surely you would tell me to just forget about this diabetes thing and go shopping, right?

Please write soon,
Riva

***
Dear Riva,

Santa and I just returned from the Caribbean, and he told me about your difficulty. He said he told you to look for the gift in your diabetes. I concur with Santa; there are many gifts to be found in diabetes, if you look. For one, my child, you won’t have to drink the traditional Manishewitz holiday wine anymore. The Counsel all agree that it is much too sweet. Bring out the Chardonnay!

When Santa asks you to look for a gift in your diabetes, he is not saying this because you are not Catholic and he is not bringing you anything, although this is true. He is speaking like our brothers the Buddhists, who profess that there is a gift in everything if you look for something positive that it can bring into your life.

Let me tell you a story, my child. My own Aunt Sheila had diabetes, and after she stopped kvetching, she went to a spa and learned how to eat healthfully. She shopped along Rodeo Drive and bought a cute little jogging outfit and started running. On her jog along the ocean she met her fourth husband, Marvin, and they’re very happy. They just moved into a $6 million mansion in Jupiter, Fla. — right next to Burt Reynolds! Everyone’s plotzing! The house was in foreclosure so they have even more money to decorate!

Darling girl, find a gift in your diabetes, because to be honest, since you’re not orthodox, and all I have are these great wigs I got on sale from my cousin Schlomo, I’m not bringing you anything, either. And really, it’s not very pleasant to whine.

Shabbat Shalom
Rabbi, Local Union 107

***
Dear Rabbi,

I thought about what you and Santa said and have decided to become a Buddhist. I picked up the Dalai Lama’s book, “The Art of Happiness.” He says, “Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.” I told my friend Joe I like butterflies, and I like the robe, so these aren’t bad gifts.

Joe said the quote meant that we are the source of our happiness, that happiness can only come from inside us, regardless of what happens in our lives. Hmm, I said, maybe I need to learn more. So I booked a flight to Tibet.

Now if only I didn’t have to drag all this damn diabetes stuff with me…. ohm… ohm… oy.

Are you sowing the seeds for later regrets now?

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I’ve just become aware of a book I’m eager to read but haven’t yet got my hands on. Even so, I thought it worth telling you about it. It’s called, The Top Five Regrets of the Dying by Bronnie Ware. Bronnie became a palliative nurse after doing many other things in her life and spent a lot of time with people who were in their last days. 

I’m not attracted to books like this because I have a ghoulish side, but because I think life is short – easy to do since I’m approaching 60 – and living with diabetes, one wonders will life be even shorter?

I like to know what people value at the end of their lives and what they think they would have done differently given the opportunity to do it all again. Of course, we can never really know if we’d do something differently in the moment without the benefit of hindsight, but still…

So while I haven’t yet read the book, I thought you might enjoy reading the article as I just did. It tells what the top five things are that people regret. 

I won’t spoil the surprise. I’ll just let you know that while I’ve been finishing writing my third book, Diabetes Do’s and How To’s which you will love — it’s just the actions what you need to do to be healthy with diabetes, and how to do them, available this fall–I will tell you I wish I’d made more time for regret number 4. 

What does it take to help patients change behavior?

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I haven’t said much about it over the past few months but I’ve been working with QuantiaMD — a web site for health care providers — to answer provider’s questions about how to work better with diabetes patients. As you might imagine most of the questions had to do with behavior change: “How do I help my patient eat healthier?”; “Why does my patient start doing better, like taking their medicine and exercising and then just stop?”

So I’ve been teaching some basic principles of behavior change and coaching in three presentations, with four more to come, and I thought it time to share. 

1. “Rapport before report”: This first presentation is about seeing the patient in front of you, not just their numbers.

2. “Why patients don’t change behavior and what you can do” : In my second presentation I discuss whether patients have the correct information? Do they understand what to do? Do they have the skills they need? And does fear stop them?

3. “Three more reasons why patients don’t change behavior and what you can do”: In this presentation I talk about the importance of patients choosing the behavior they’ll change, whether their motivation not to change is greater than their motivation to change and does their environment support the change? And there’s a last reason: Do you as a health care provider model the change?  

Unfortunately we know most doctors today will treat more patients with chronic illness than acute, and most doctors are not trained how to do so. I’m honored to have the opportunity to address all those who help to keep us well. 

To view the presentations, you’ll be prompted to register on QuantiaMD, but it’s free and the presentations are each about six minutes long.

So pour yourself a cup of tea, pull up a chair and open your mind to the possibilities of doing a few little things that can deliver powerful results. 

Now you see me, now you don’t, diabetes

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There’s a strange phenomena that comes with living with diabetes. Perhaps the same as living with any illness or condition that slowly, gradually, over time, progresses. So slowly we don’t see it progressing; I certainly don’t feel it progressing.

It progresses whether we take care of it or not. In the background, slowly during the ordinary days when I get up, work at my computer, meet friends for lunch, walk through the city, laugh through dinner out with my husband.   

If I look back I know exactly when my ophthalmologist told me she saw the first sign of an eye problem – a slow growing cataract when I was 52. The first sign, after 34 years of being so relieved I had no eye problems, now I did.

I remember exactly when I got my first, of the two I’ve had, frozen shoulder. It was the day I got off the plane after living in Tokyo for six years. Day after day my shoulder became more limited in its movement and more painful. 

For a year I went from my endo to my family doctor to an occupational therapist, even a chiropractor while I was visiting friends in San Francisco. But it wasn’t until my mother told me to go to her chiropractor when I came home that my shoulder was properly diagnosed and treated. My second frozen shoulder 15 years later needed an operation. When I asked if this could recur, my ace surgeon said, “Maybe, in about fifteen years.”

I consider myself lucky that after 40 years of living with type 1 diabetes I have relatively little to show for it. Yet, when I sat in the doctor’s office four years ago and was lucky enough to hear I had a significant hearing loss I could only cry and think diabetes. 

When I notice my calves cramping more than usual, as I have the past few weeks, I can only think neuropathy. And while I notice for the first time an odd pulsing in my forearm, like a string being pulled on my nerves, and it subsides, but never really goes away, I think, diabetes? 

Now you see me, now you don’t, diabetes. You are there and not there. I can forget you, but never as long as for a day. While I believe I’m better off to work hard at keeping my diabetes in control and complications at bay, I also know, I cannot control anything, least of all whether complications will creep in in the mist of day, while I’m trying so hard, or during the dark of night, while I’m hoping only to wake up in the morning.