I want to tell you something it took my mother roughly 70 years to learn: Fear and worry can be giant stalkers and thieves. I grew up with a mom whose two primary emotions were fear and worry. Admittedly, there are times these can save a life. But usually they steal from your life. Fear and worry for decades have colored how my mother sees and interacts with the world, "Take a hat or you'll get sick!," "Let's go now (2 hours early), there'll be traffic!," "No, I'm not going. They only invited me because they were being polite." These are not life-savers, they are life-stealers.
My mother's automatic response to most situations is: "You shouldn't X, because Y will happen and Y will be terrible!" Fear and worry affect her decisions and expectations of others and the world. It is a heavy load to bear when fear and worry are what you hold most close, simultaneously creating comfort, distress and so much limitation.
I've pointed this out to my mother for years, since I was a teenager actually. She is wholly aware and agrees, but knowing and doing something to change are two different things. When she imposes her fear and worry on me, I stop her as quickly as I can. Sometimes graciously, sometimes not so much. She has learned at these times to back off. It is self-protection for me: I don't want to absorb her negativity. I love my mother and I know after years of trying, I will not change her and I don't want her outlook to change me. Funny thing is if you met my mother you would think she is lovely, warm and personable, and perfectly normal, all of which she is. And she harbors these demons.
I have seen these emotions narrow my mother's world and opportunities, like the friends not made because "They don't really want me" and the job offered not taken because, "I won't do it properly" when hands down she would do it better than anyone. I've been ruminating about this because I recently read a quote that captured these thoughts so well and reminded me how easy it is to nurture fear and worry living with diabetes:
"Worry does not empty tomorrow of its sorrow, it empties today of its strength." Cornelia (Corrie) ten Boom
So succinct, so profound, so true. I shared this quote with a group of patients I presented to a few weeks ago in Gettysburg, Pennsylvania. If you spend time worrying about the future, complications or premature death, you will not change anything except probably feel worse than you already do. However, if you take that same investment of time and energy to do something productive and useful - like learning how to and eating healthier, being more active, going to the doctor and spending more time doing what you enjoy, you will change everything.
Corrie Boom was an interesting woman - the first licensed female watchmaker in The Netherlands who after WWII became a preacher traveling the world preaching forgiveness. During the war Corrie worked with the Dutch underground recusing Jews, until in 1944 her entire family was arrested and sent to Ravensbruck concentration camp. When released from the camp - due to a clerical error, otherwise she would have died there like her sister - Corrie returned to the Netherlands and opened rehabilitation centers. Soon after she went back to Germany where she began preaching, bringing her Christian beliefs about the power of forgiveness to over 60 countries. In her post-war experience talking with other Nazi victims, she discovered that those who were able to forgive were best able to rebuild their lives.
There is more and more literature coming out about the power of positive emotions, which I believe just as strongly as I believe negative emotions are disempowering. While fear and worry provide the comfort of feeling like you're doing something, in actuality all you're doing is using up time and energy that can be put to actually improving something.
My mother's turning 80 this January and in many ways she is recapturing much of the life she gave away. While fear and worry are still fond friends, she has found a way to turn her head away a good deal more often now and see them as the thieves that they are.
We've tried it once, I think, instigated by my sister-in-law's sister a few years back when she was pregnant with her first child at 40. We went around the table of 12 each saying what we're thankful for. We got through about three and a half people before it all caved in and other conversations looped us elsewhere so that we never returned to the affair.
So, in this space, I will say what I'm thankful for before anyone has a chance to divert me:
The fact that each day I wake up to another day
My beloved husband, who has to remind me that rather than take a picture of something on a piece of paper and then drop it digitally onto my computer, that I can just scan it
My immediate family who still allow me to feel protected in the world
My dear friends who send me those annoying, trite emails because they care
My work which leaves me to never question what to do with my life - the single question that haunted me for years and years
My little home, that while I bemoan its size, I have one - and I love the leafy neighborhood it occupies
Seeing the world from Cleveland to Copenhagen, meeting new people who feel like old friends, and escaping New York City and coming home again
Great nights out discussing the world over good food and great wine
Books that take me away and films that bring me home, and vice versa
Adventures and surprises that show up now on a regular basis since I'm never quite sure where this life is taking me
That I still look relatively OK at 56 due to moderate living and my parents' gene pool
My health, which outside of a few nicks and dents is pretty good
My ability to stay positive in a negative world
That I could come up with another bunch of stuff if I spent more time thinking about it...
and all of you who make what I do possible.
I had brunch a few weeks ago with friends and acquaintances, all of whom have diabetes. As always happens, we talked exclusively about diabetes throughout the whole meal, both as it affects us personally and the bigger picture as its affecting the world. I might add, I love it: I love having the rare opportunity to talk diabetes with fellow PWDs.
Having just read Allison Blass's post, "Have a Little Respect" on DiabetesMine, I was reminded of a very similar tenor to our conversation - a lot of understated judgement on what we each choose to eat. When something in our conversation prompted me to say that my A1Cs have been in the 5's these last few years, I was immediately peppered with curious and critical remarks, "How do you do that?" "I've never heard of a type 1 who can do that!" "You must have lows all the time!" "Well, I'm not going to give up foods I like and I don't think you should have to!" "That's riva, she really restricts herself."
It is interesting, isn't it, one, how we tend to be so judgmental and two, that it's typically around food. We don't tend to get caught up in whether someone else is exercising or making sure their prescriptions are refilled.
The short of it is what I eat works for me and fulfills my goals - to be as healthy as possible as long as possible - and I've weaned myself off white carbs, butter and overly sweet and fatty foods over so many years so that I don't miss them, and on occasion when I taste them, I don't like them. But I don't expect anyone else to do as I do.
One of the participants at that lunch has long had trouble with the fact that I am so disciplined around my eating. I have explained many times that getting diabetes 37 years ago when there were no meters, my blood sugars the first dozen years were always high and I got some mild complications. Now, having the tools to keep my blood sugars near normal range, it's important to me to do that to delay or prevent further complications. Maintaining a low carb, low fat diet is not a hardship for me, and I do eat occasional sweets and fried foods. Yet, all my friend seems to see is what she thinks is self-deprivation and she seems to unconsciously translate that into my seeing myself as better than her. Nothing could be further from the truth.
So why do we judge others? Is it that it seems to validate our own choices? Is it due to our basic insecurity and so we put others down to lift ourselves up? Is it that we feel special in some way to know better or do better? And why do we feel permission to do it around our diabetes? Would you tell an obese person dining with you that they have a hell of a nerve eating that piece of cake?
Our personal choices and preferences are just that: Don't dictate to others. If pizza is not your cup of tea, eat what is. If we are our brothers' and sisters' keeper to help when asked are we not also our PWDs' keeper in keeping our mouths closed when not?
Letting others be where they are if they're not asking for our sage advice is an education we may all benefit from. Respect the differences as Allison says.
On a roll with diabetes
This month Diabetes Health magazine was about diabetes heroes. I think there are more diabetes heroes around than we could ever write about and we generally tend to only hear about celebrities or someone who's done something extraordinary.
But after interviewing more than 125 people with diabetes, we simple folk who live every day with this condition, are in my mind pretty darn heroic for all we do and still get up each morning to do it all again.
Here's one such story of a simple hero Thomas Fineco: A man who decided after his diagnosis to take life by the seat of his pants and get in shape.
You could consider what he's done extraordinary or merely a guy who determined to get the most out of life. The same opportunity lies before all of us, whether you put legs (or a bicycle seat) under your dream.
A CDE's experiment: Hand-logging vs. meter memory
I'm a type 1 who rarely logs her blood sugar numbers. I test about six times a day ordinarily, more when I eat a meal out and don't really know how many carbs are in it, or take an unexpected walk and don't know where its left me, or do a presentation and know the pre-talk jitters are messing with me or my sugar's rising fast in the morning and I haven't even had breakfast yet... and on and on and on. You get the idea, I test frequently.
But I never log my blood sugars. Sure, I hear you say, why bother they're in my meter. But I never look at them, never download them. And if you're saying to yourself, they're in my meter, you may not pay them much mind either.
A few months ago I had a short spate of logging my numbers because I started with a new endo and was asked to write them down. For about six weeks I wrote them in a log book. Once a week I sent them to my endo. So I began to look at them and noticed some overarching trends, 'tis true, yet at the same time a certain randomness - and without the additional information like what was I eating and did I walk that morning and had I already taken a unit of Apidra to blunt my early morning rise - they seemed just like floating numbers not attached to any relevant information. So, sure enough when I stopped sending them to my endo I stopped writing them down.
Now I'll contradict all I just said. If you're new to blood sugar testing or going through a patch where your numbers seemed to have changed for no apparent reason or you just can't figure them out, I do think logging can help you spot patterns. It also makes you more aware that you indeed have blood sugar numbers and that they fluctuate throughout the day.
And, writing them down with paper and pen seems to win in winning your attention over just letting your meter collect them. In this little piece in Diabetes Forecast magazine, "The Value of the Logbook" Laurie Terrio, a cde and type 1, lost her own argument of meter over logbook when she began to write them down and really see the impact of her numbers.
If you need a little extra help with your blood sugar, try the pen. You might just find something worthwhile peering back at you from a real page.
These last two weeks I've been "Amtracking" up and down the East Coast: From New York to Cambridge, MA two weeks ago and last week to Harrisburg, PA and then back from Philadelphia to speak to patients and nurses. This work I do has to my surprise led to seeing a lot of the country.
Not having ridden Amtrack for probably a decade it was a delightful surprise - almost stepping back into a more genteel era. The seats are wide, comfy and provide plenty of leg room, unlike those I've grown used to now in airplanes' economy class. The conductors are pleasant, "Hello, how are you doing today?" While stepping aboard on one leg of my journey, the high steps made it difficult to lift my wheeling case. Not a problem, the conductor had it in tow before I even thought how was I going to manage it.
Amtrack also has a "Quiet Zone." A car where no cell phone use or loud conversation is allowed. What a delight. Between the gentle rolling of the train and the silence I fell off to sleep for an hour. Moreover, two restrooms in every car, never a line! I am forever changed. Next time I go somewhere Amtrack goes and the trip is not more than a few hours I will opt for the age-old comfort and civility of train-ing over plane-ing. Moreover, it allows you to bypass going through airport security where a hand search reveals syringes and begs questions, an insulin pen raises a red flag and one is supposed to (I rarely do) extricate one's self from seat, climb over two fellow passengers and scuttle off to the restroom to take a shot.
I was train-ing to speak to two groups of patients and nurses amid the rolling hills of rural Pennsylvania. My train stop was Harrisburg, where I was picked up by Betsy Wargo, a dedicated diabetes educator who serves the nearby area through Wellspan, and had invited me to be the key speaker for their annual diabetes health fair. The fair was held at Gettysburg Hospital in historic Gettysburg, home of one of the major battles of the Civil War and Abraham Lincoln's famous address. At the hospital I had the pleasure of addressing about 70 patients as an author and fellow patient. I shared my personal story of getting diabetes at 18 and what it's been like to live with, dispelled many of the diabetes myths that confuse most people and explained the power of tapping into our positive emotions to better manage diabetes. These of course are the topics of my two books.
Focusing on what we want (happy, healthy life) rather than what we don't want (complications) and putting more energy into our positive emotions, for instance appreciating what we have, forgiving ourselves when we muck up, patting ourselves on the back for all we do and taking pride in our efforts - helps us do better. Oprah often says, "When you know better, you do better." What's also true is, "When you feel better, you do better." Afterward Betsy and I toasted the successful evening over a drink at the famed bar inside the hotel and talked passionately about how to help patients improve their self management.
The next day I was picked up and driven to Springfield, a town just outside of Philadelphia, where I presented my Taking Control program to another 70 patients. I followed an endocrinologist in the line-up and when I finished my talk numerous people told me how much they got out of what I said. It doesn't hurt to have a powerful story to share or to follow a doctor who has just pummeled your audience with target numbers, facts and figures.
Then it was back on the train home to the Big Apple where I, for one, was riding on a high. As we approach Thanksgiving, more and more for me it is not an annual event. Throughout the year I give thanks for how fortunate I am to be doing this work and how grateful I am for all who make it possible.
Global symbol for diabetes
This Saturday, November 14th, is World Diabetes Day (WDD). The day people around the world will mark in various ways to involve the local community, engage the media, and raise awareness of key diabetes issues among decision-makers and the public. In 2008 over 1.2 billion people were reached through campaign messages.
One of the most stirring and public displays of WDD will be the 1107 monuments lit in blue around the world, from Sydney to San Francisco, from New York City's Empire State Building and United Nations building to the Obelisque in Paris.
November 14th marks the birthday of Dr. Frederick Banting. Born November 14, 1891, Dr. Banting, along with Dr. Charles Best, discovered life-saving insulin in 1921 in Canada.
Learn more about World Diabetes Day and how you can get involved. As a simple show of support, think of doing something "blue" this Saturday like lighting a blue candle in your home or workplace or wearing a WDD pin. The blue represents the sky and the circle unity across the globe in this effort. The icon also represents support for the United National Resolution on diabetes which was led by the International Diabetes Federation.
As for me, I'll be in Springfield, Pennsylvania addressing 75 fellow PWDs and nurses about healthy diabetes habits proudly wearing my pin. You can be sure I'm going to ask how many people know what it stands for. And everyone will by time I leave.
Yesterday I had the rare good fortune to do one of my favorite things. Shoot the breeze with other PWDs (people with diabetes if we're being politically correct). Miriam Tucker, medical journalist, was in town and invited a bunch of us to brunch. At the table were also Dan Hurley, whose new book, Diabetes Rising, is due out this January, Joy Pape, cde and author, Lee Ann Thill, blogger of The Butter Compartment - don't you just love it - and art therapist, and two of my fellow peer-mentors, Ruth Charne and Ann Gann.
We assembled at 12:30 and didn't leave till 3 PM. That gives you an idea of the spirited and passionate conversation we were having, that I would venture to say, always erupts when you fill a table with opinionated PWDs - oops that's redundant.
When we left I said how much fun it had been because I always learn something. The first thing I learned was no one knew any better than me how many units of insulin it takes to cover a galette as you see above - the house specialty of the French bistro where we were dining. Their galette arrived as a thin buckwheat pancake with an egg on top and spinach inside. (Yes, I was deviating from my typical low-carb meals, but it was their speciality...)
As I peered at it in front of me I asked my table-mates how many carbs do you think this is? Everyone leaned across the table to inspect and then perplexed faces looked back at me. Each guess ventured was obviously and apologetically offered as a guess. And while it didn't help my dosing any, I warmed and basked in the knowledge that I'm not the only one who's guessing at my dose a good deal of the time - and even here among such a highly educated group! Of course this led to the timeless debate about low-carb diets, adherence, what does it mean to be "good" or "bad" and as Miriam looked at her pump, unsure it was working, the value of wearing an insulin pump. At the table three did, two didn't, one had and one's beginning. I'm waiting on the Solo Micropump to throw my hat in the ring.
We wondered whether pharmas are really invested in curing diabetes. Well, it seemed not many of us really wonder. We talked about what defines "screwing-up" in diabetes - is it just getting a bad number or consciously eating something you "shouldn't." That led to should there be "shouldn'ts?Which led to talk about "compliance" and "non-compliance": Are these appropriate terms for diabetes? The general consensus was they work well for doctors, who are used to thinking in terms of tasks done and not done, but not patients who are living busy and complex lives where doing or not doing a diabetes task is never about one thing. We chatted about why do we feel guilty, even after living with diabetes for more than 30 years and knowing full well our numbers are sometimes not a reflection of our actions, why do we still feel guilty or ashamed with a number like 300?
You should have been there, you would have loved it. If you have a bunch of PWDs in your area why not invite them all to lunch? I promise you it will be educational and entertaining.
For those who wonder, turns out I guessed really well for my galette. With an insulin to carb ratio of 1:17, 2 1/2 units of Apidra left me at a perfect 91 before dinner. Truly it was the gods coming together saying, "riva, today we're going to give you a break."
My sincerest thanks to Miriam for arranging brunch and to all who came. And Katie you were missed. There's little I find more delicious than having food with those who really get it - simply because they really got it.
I take it very personally
If I think about it, most mornings when the weather isn't obvious, I stand at my living room window while my oatmeal is simmering on the stove, squinting through the trees outside to see if it's raining or not. When the TV news, on in the background, announces the weather, I pay attention. Well, sort of. It seems to go in one ear and out the other as I'm up and down, in and out of the kitchen stirring, testing my blood sugar, shooting up my long-acting and rapid-acting insulin, trying to think back if I already took one unit of my rapid-acting insulin to blunt the dawn phenomena (rapidly rising early morning blood sugar) and cleaning up the little blood splatter that's trickled off the used strip onto the counter and cabinets. (I omitted that I'm lately careful to open the lid of the strips canister slowly and quietly after my husband said one day, "Every time I hear that snapping sound it makes me feel horrible knowing you're going to hurt yourself again.") Judging the weather for the course of the day is all about when I will take my daily walk, which is a big determinant of how much insulin I'll inject for breakfast.
Some version of this goes on throughout a fair part of the day: Hmm...maybe I should move my 9:30 AM walk to around 11 AM and walk to a subway station further away from my home that'll take me into the city where I'm meeting friends for lunch. Wonder what'll be on the menu for lunch? Better remember to take my insulin. Hmm..should I put it in my bag now?...But, the weather guy said "chance of showers" this morning...hmm...do I remember what time?
Of course at the restaurant I spend time studying the menu trying to chose something that isn't a lot of carbs, then spend time analyzing what's on my plate when it arrives so I can take my best guess how much insulin I need to cover it. Done. Probably should check in a few hours, though, to know how well I guessed. After lunch it's finally bright sunshine so I decide now (not when I took my bolus for lunch) that I really want to walk the 23 blocks downtown where I'll grab a subway back home. Damn! I didn't plan for this but I can't resist walking in the city on a beautiful day. The heck with it, I'll just have to deal with it when the low comes. Hmm...will it come? If I took just a little less insulin than I actually needed for lunch then the walk will balance my blood sugar out. Hmm...
Guess not. Almost at the train station I feel my heart beating rapidly, I'm a little sweatier than I would be normally...Can I hold on till I'm down on the train platform or do I have to stop now and break my stride and handle this? Jeez, the third time this week! When am I going to get better at judging all this? Should I stop? Shouldn't I? Should I stop? Shouldn't I? Wow, why can't I figure this out. Oh... I... get... it... I'm ...really... low. Beettteer ...stop!
I eat a roll of SweeTarts and 10 or so minutes later my body's back to normal. But my head is still calculating: Where/how could I have avoided this? Could I have avoided this?
It's only 3 or 4 PM on a typical day and look how much of my time, energy, moments I've devoted to my diabetes. Oh, yeah, I forgot, this morning three people sent me emails telling me that I should get the H1N1 flu shot. Should I? I've never gotten a flu shot before. I know this flu is supposed to be really bad and diabetics are on the critical list. Should I ask my doctor? Do more research on the web? Just do it? Just not do it? Hmm...will have to give this more thought.
Granted, some of my friends think I'm obsessive - you probably do too now, but probably not if you live with insulin-dependent diabetes. In full disclosure it did take me 37 years to decide to get a medic alert bracelet (admittedly I wasn't thinking about it ALL the time.) And I have been thinking about getting a pump for the last five years, although not ALL the time.
Everyone talks about how diabetes tasks are a lot to handle. But I'm not talking about those time-grabbers like: Calling to make a doctor's appointment (GP, endo, podiatrist, cde, dietitian, ophthalmologist) getting there and hanging out in the waiting room. Or checking how much synthroid, apidra, lantus I have left and judging when I have to call my health insurance company to refill my prescriptions. I'm not talking about the time spent calling my health insurance company to get more test strips or going to the lab for my blood tests, or thinking through all the extra medicines, syringes, testing supplies and back-ups I have to take when packing, or what/how much food to pack if I'm getting on a plane or a long train ride and making sure I get to the supermarket to get something healthy. I'm not even talking about the on-going supportive phone calls with my diabetic friends or the short quarterly crying jags from being tired of all this.
No, I'm talking about how many moments of every day my energy is stolen by needing to analyze, calculate, plan, prep, correct, stuff pockets with glucose tablets and 'just-in-case-cash', make light of (so as not to burden anyone), solving and resolving all the stuff that happens because of my diabetes, or all the stuff I'm trying to avoid happening because of my diabetes. Call me crazy - but my A1Cs are in the 5's because of all I do, and that's where I plan to keep them. Also, I've never been unable to treat a low blood sugar myself. I do what I do so that to the best of my ability I'll never be in that position and so that I will have the longest, best run possible.
At the International Diabetes Federation conference two weeks ago, Michael Weiss, Past President of the ADA, gave a presentation about what living with diabetes has been like for him. From his half hour talk I remember two things:
1) Even when he got cancer and was petrified and went through a year of chemo, now that he's five years cancer free it no longer occupies him. Yet diabetes still does every day. He said so. He also said when he had cancer, "All I had to do was follow my doctor's instructions. It was easy. With diabetes I have to make all the decisions every single day. It's never-ending."
2) How much of his thinking is monopolized by diabetes
I'd never thought how much of my time/energy/thoughts are monopolized with diabetes until Michael said it - and then, bling, I realized how true it was, and felt oddly validated by hearing someone else say it. Maybe it's the curse of an overly responsible type 1, or being on insulin no matter what type you have, but today I want everyone in the world to know that when I say you can find a gift in your diabetes, I mean it. And when I say managing diabetes is a second job, I mean it.