riva greenberg
in your power to create health
Huffington Post Blog
My goal is to help you improve your diabetes management. Here you'll find: observations, reflections, current events, something I've learned, an interview I've done, interesting books I've read or something else that I hope offers you value. Then enjoy my books: 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABCs of Loving Yourself with Diabetes.
At 2:33 PM yesterday I pushed the "Send" button on the backstage posting area of The Huffington Post and my first blog post was launched: A review of Oprah's show, Diabetes: America's Silent Killer, and why most patients don't manage their diabetes the way they should, and how they could.
A few weeks ago I attended a seminar given by Amylin Pharmaceutical, manufacturer of Byetta and Symlin, in of all places Carnegie Hall. I have no complaints, it included lunch and a tour - and an important education.
Amylin's seminar, "New Approach to type 2 Diabetes Management" had five prestigious presenters at the helm: Dr. Louis Aronne, Clinical Professor of Medicine, Weill Cornell Medical College and obesity expert; Dr. Robert Chilton, Cardiovascular surgeon, University of Texas Health Science Center; Dr. Donna Ryan, Obesity expert, Pennington Biomedical Research Center; MEd Molly Gee, Dietician, Baylor College of Medicine; Dr. Matthew Wintie, UK, Director of R&D, Amylin.
The new approach proposes that the same attention on glucose control for type 2s must be given to cardiovascular risks. We heard from the presenters that type 2 diabetes is a cardiovascular disease. As Dr. Chilton warned, people with type 2 diabetes have a two-to-four-fold increase in risk of stroke and coronary heart disease and a two-to-five-fold increase in risk of heart failure, and will likely die due to cardiovascular disease. Cardiovascular risks: obesity, blood pressure, cholesterol, triglycerides and inflammation, (also known as metabolic syndrome) typically accompany type 2 diabetes. If we don't control these health ailments, cardiovascular events will occur in greater numbers as the tide of type 2 diabetes rises.
In all disclosure, Amylin is working on a drug that will help control cardiovascular disease risks as well as glucose, and not produce weight gain. The catch-22 of course is that weight gain contributes to cardiovascular risk and some diabetes medications cause weight gain.
I came away from the Amylin seminar thinking unmanaged type 2 diabetes is a time bomb, and for the first time I understood why the American Diabetes Association has long advocated a low fat/high carb diet; obesity prompts the hormonal imbalances that create metabolic syndrome. I won't get into healthy fats vs. unhealthy fats or that unused carbs also turn into fat. Suffice to say, if you have type 2 diabetes, get your vitals checked and ask about your heart health.
As February is American Heart Month it's a good time to learn more about your heart health and risk for heart disease. Cardiovascular disease is America's number 1 killer - every 25 seconds someone experiences a cardiovascular event and every minute someone dies. It is time, I agree, to think 'heart' as well as 'sugar' if you have type 2 diabetes.
I've long heard that people with type 2 diabetes have as much chance of having a heart attack as people who've already had one. Somehow it doesn't sink in unless you've had a heart attack or until you see, as I did, the stunning pictures of what clogged arteries look like.
To show support for heart month, this Friday you're encouraged to wear red. I'd also ask you to show support for your heart: Take a walk and make that doctor's appointment to check out your heart-health. Then you can toast your heart-healthy actions with a glass of heart-healthy red wine.
The CGM iPro sensor I wore for five days (see post below) came off Monday morning in a hurricane. Not exactly what you think, but I like the drama. My walk from the subway station to the hospital to see my CDE was in a rainstorm at high gale winds we rarely see here in New York - umbrellas discarded on the streets, puddles knee-high. Were it not for the fact that my iPro site was itching like mad for two nights from the sticky tape over it I'm not sure I would have braved the storm at all.
By the time I arrived at the hospital the entire front of my jeans was soaked so that I was wringing water out of the cuffs. I was eternally grateful that not only did I brave the storm, but that my CDE did as well. Moments later the CGM came off, a lot more easily than it went in thank goodness, and we downloaded the results. Luckily the battery lasted for as long as I wore it, just over five days. That's not always the case, but it was here. Hallelujah!
Then we stared at pages of graphs, charts and numbers of my blood sugar numbers as picked up by the sensor every five minutes and I got to see my patterns throughout the day, and night.
Since I was doing finger sticks at least four times a day along with wearing the sensor, my daytime numbers were not surprising, and, my daytime numbers are typically understandable to me. When I'm a little high it's usually because I didn't calculate the carbs in a meal or snack correctly. When I'm a little low it's usually for the same reason, or my powerwalk lowered me slightly more than I expected. Being insulin-sensitive, as many type 1s are, a half unit of my rapid-acting insulin has an impact.
During this five day period I also went high after a birthday lunch for my mom who turned 80 - a poor calculation on the calamari and spring rolls! But mom, you're worth it. And I discovered just as routine is my savior, so is my experience. Since I was logging my numbers, I used the carb counts on packages more than usual and that led me more astray than the educated guesses I typically make based on years of testing. Perhaps it's because food manufacturers are allowed a 20% margin on the carb counts listed on their packages, so beware.
But what I really wanted to know from this experiment is what my numbers do overnight, and that was the reveal. Around midnight they start sliding downward hour after hour. Around 5 AM they are at their lowest, in the high 50's/low 60's, and then they begin to gradually come up between 5:30 and 6:30 AM and then rise more swiftly. If I wake up and test my blood sugar around 6:30 AM the number's usually around 75 or 80, a half hour later they're 90 or 100. A half hour after that they're climbing over 100. This is without doing anything or eating anything.
"This is perfectly normal," said my CDE and nothing to worry about. In the morning your liver is pumping out glucose-raising hormones to get you ready for the day (dawn phenomenon). Even if you're a little over 100 before you take your injection, it's fine." O.K., I'm relieved about that since my boundaries are admittedly narrow.
"Can I prevent the overnight slide or morning rise?," I asked. "Not really, this is your body and you're doing fine. The only thing that might reduce the overnight low is cutting back on your Lantus one unit, but I don't think you need to do that. You don't go that low at 5 AM and then you come back up. "Would a pump level this out?," I asked. "Yes, and that's when most of my patients change to a pump, when multiple injections just can't do more for them."
So what I know is I'm working the MDI (multiple daily injections) system as best I can. I keep my blood sugar between 120 and 140 before I go to sleep, on the higher end of that range if I've had wine with dinner since that creates a slightly greater drop overnight. Then I blunt the morning rise with one unit of my rapid-acting insulin as soon as I wake up and take the rest of my breakfast dose just before or during my morning meal.
My concern that I drop so low overnight, like to 30 or 40 mg/dl, that my liver shoots out glucagon to save me from dying turned out to be false. That is a relief. Also, while I don't log my numbers ordinarily, I'm already obsessive enough, if you log your numbers - and for most people this is an invaluable exercise - make sure you also note what you eat and any exercise. Most log books don't give you space for this. So log your numbers on a simple sheet of paper. A bunch of numbers without these references is an incomplete picture.
I highly recommend if you have access to wearing a trial CGM for a few days to see your pattern that you do so. This kind of information can lead to an important change or modification in your treatment plan. I know I'll be sleeping better from now on.
Note: Our bodies are different. Don't base any of your own treatment decisions on my results. Check with your health care provider to be safe.
Noticing I was becoming a sugar-testing junkie recently, I opted to get hooked up to a CGM for a 5 day trial period, save some finger skin and see if I could learn something.
My recent addiction to knowing where my numbers are, beside a proclivity to perfection, is largely because my blood sugars rise sooo rapidly in the morning. Can I shut the barn door more quickly so I don't have to do two boluses before breakfast? The first to merely blunt the rise.
My new CDE put this on me in her office and what should have been a rather simple affair turned out to be quite a painful one. I wasn't prepared for the tugging, gripping and sensation of tearing skin when this thing went in. In fact you'll see quite a bit of redness around it which is my blood. My CDE told me it is not uncommon to bleed and not a problem. OK, but it didn't exactly lift my spirits and it did make me utter, "Diabetes is not exactly a pain-free disease!"
When I left my CDE's office, newly bionic, I walked about 20 blocks to meet a friend for lunch. Each footfall, I was overly aware of this gizmo dug into my side and the very fact that my walking was impacting my blood sugar. A weird thing for your brain to be so focused on an automatic body function. When I sat down to lunch I copped the banquette seat feeling vulnerable and exposed to any passer by who might ram into my poor abdomen. Well, it's not really on my abdomen, but I don't know what you'd call this side area.
Leaving the restaurant I began to experience my plastic gizmo differently. I felt somehow as though it was now my helpmate. As though I was not in this all alone anymore. I found this quite comforting and recognized it as a wholly new feeling.
Now, two days in, I'm used to my CGM, it doesn't hurt but the five inches of sticky tape that's holding it in place grips and pulls as I twist and turn. And while my plastic companion is (hopefully) tracking my numbers, so am I four times a day in a log book, along with carb counts and activities, just in case anything goes awry.
I will keep you posted next week when gizmo comes off. It would be dandy to have learned something more than which pants slide easily over gizmo and which ones don't.
Remember that popular Beatles' song, "When I'm 64?" The refrain goes, "Will you still need me, will you still feed me, when I'm 64?" I often wonder how I’ll be able to manage my diabetes when I’m old. Granted I’m 56 and many would say I’m already old, but let's not go there.
But 'tis true, my memory isn’t what it used to
be. Sometimes in the morning, since I take three injections, I can lose sight
of which I've taken and which I haven't. I begin with an initial unit of Apidra
(rapid-acting insulin) when I first wake up to blunt my rising blood sugar
(dawn phenomena). I take my breakfast bolus once my bowl of oatmeal is already
in my lap – sorry, small one bedroom apartment means my dining table supports
my computer, not my meals.
I try to take my Lantus (long-acting insulin)
around 8:30 AM, but sometimes I’m just not entirely sure whether Lantus made it
into the mix, in-between the testing my blood sugar, throwing the oats in the
pot, stirring, checking the weather, sifting through my new emails, deciding
what to where and when to shower.
The way I can usually remember whether I took my
Lantus is to try and find the red mark on my body where I injected. Is it on my
thigh, near my navel, on my upper arm? If I can remember where I injected, then
I know whether I’ve injected. Hmmm…doesn’t inspire great confidence, does it?
What will happen as my eyesight worsens? I’ve
worn glasses since the age of eleven, but what if it gets worse? Will I be able
to see the notches on the syringe? True, by then I’ll be bionic sporting a
pump, CGM, artificial pancreas, the whole nine yards, and likely the cataract
surgery I’ll need soon may even restore my eyesight. OK, forget that one.
But what about Alzheimer’s? How do people with
Alzheimer’s and diabetes remember to take their medicine? Order their refills?
Schedule doctor visits? How do people with Parkinson's and diabetes keep from
trembling during an injection or pump bolus? Really, how?
Managing diabetes as a fairly healthy adult who
works at home and so can tailor her day around her diabetes needs is laborious,
but entirely doable. What will it be like, however, in ten or twenty years when
my knees are shot so I can't stand well and reach my insulin in the fridge, my
memory's gone so I haven't a clue if I shot up or even what I take anymore, the
dribbling starts and I slip in the tub...yikes!
All this makes me ruminate that this is not an
illness for the aged and yet of course it’s mostly seniors who get diabetes. I
don’t know the answers to how I'll manage this when I'm 84 (at least I'm
thinking that far out) so I choose not to spend much time in the question. And
I do expect by time I’m “old” so much will have changed to manage diabetes that
there'll be hardly much at all to do.
Doesn’t hurt to dream, does it?
The recent earthquake in Haiti reminds us that when danger strikes, people with diabetes are doubly hit - not being able to do without their medicine and testing supplies.
Insulin for Life is sending insulin, strips, meters, lancets, pens, pen needles and syringes to Haiti and can use your donation. Their operation will need funds to be able to continue sending supplies. You'll see a 'Donate' button on the left bar of their web site in orange.
You can also check out Manny Hernandez' post about his exchange with Insulin for Life's president Ron Raab.
From time to time I see a book worth mentioning and my latest little thrill is Michael Pollan's, "Food Rules." Pollan, author of Omnivore's Dilemma, seems poised to be another Michael Moore, aiming his sword at our food giants' factory floors and over populated animal pens.
The American food system, according to Pollan, sets us up for obesity and ill health as 90% of what's in our supermarkets and is easily accessible, affordable and available isn't real food but food-like substances. Chemicals mess with our metabolism and overly sweet and salty foods leave us craving more of the same. I happen to agree with him wholeheartedly.
Pollan says doctors encouraged him to write the book because they don't have time to give patients the food lecture and what they'd like is a pamphlet they can hand patients with some rules for eating wisely. In Pollan's article on the Huffington Post, "Food Rules": A Completely Different Way to Fix the Health Care Crisis," a cardiologist remarks, "You can't imagine what I see on the insides of people these days wrecked by eating food products instead of food."
After spending years trying to answer the supposedly incredibly complicated question of how we should eat in order to be maximally healthy, Pollan discovered the answer was shockingly simple: eat real food, not too much of it, and more plants than meat. Or, put another way, get off the modern western diet, with its abundance of processed food, refined grains and sugars, and its sore lack of vegetables, whole grains and fruit. Again, he gets my thumbs up. This is, by the way, how I've been eating the last several years and maintaining both my weight and my A1Cs in the 5's.
"Food Rules" weaves humor and real life practicality into simple, straightforward rules for making healthy food choices. You can read it in an hour and be a lifetime wiser.
As this new year begins I have not made any New Year's resolutions. Actually I never do. Not since turning old enough to realize they're a cruel joke we play on ourselves. If I don't keep them I'll feel like a failure and if there's something I really want to do, I'll do it.
One thing I have been doing these past few weeks, however, is re-reading the slew of posts that I've now written here over the last two years. Truth be told, I would barely change a word. What a nice feeling that's been, and so has re-reading my own lessons been, which, yes, I benefit from as well as anyone.
Here's one that struck my fancy again especially because it reminds me to look for the good and believe in myself especially starting a new year.
Posted November 18, 2008
What if we had to purchase happiness and self esteem the way we purchase most things? Would you value it more? Would you feel it more? Would you recognize it as a tangible commodity you owned? Would our lives be happier, easier, more joyful overall? It's an interesting notion I think.
Somehow it seems negative emotions: anger, fear, guilt, worry get more of our attention and feel more at home in our lives than positive emotions like happiness, hope, pride and success. Is it just fear of failure or something else at work? I don't know, but if you had to pay for simple pleasures - a sunny day and a clear blue sky, a field of flowers, to have the loved ones in your life that you do, the satisfaction of a job well done, a fun dinner with friends, coming home after an arduous trip, having your kids put an arm around you - would you enjoy these things more?
I try these days, as too many of my contemporaries are getting ill and passing away, to recognize how fortunate I am and cherish the day and all it brings.
Time passes much faster than it used to so I'm trying more and more to follow the words of a very wise man, "Be the change you want to see in the world." These were Ghandi's words. So, if you want to have love, be love. If you want to enjoy peace, be peace. If you want to find joy, be joy. If you want to see yourself live well with diabetes, live well with diabetes.
And I think the way to appreciating things more is while not necessarily easy, pretty much as simple as what Christopher Robin said to Pooh: "You must remember this: You're braver than you believe, and stronger than you seem, and smarter than you think." Hmmm...that's a lot to take in, and yet, some pretty good stuff to live by.
So as I start this new year and it stretches in front of me now pretty much a blank canvas, I'm going to try and remember my own words and those of Christopher Robin. After all, one of my true blessings is the company I keep - around the corner, virtually and in storybook form.
Donation to JDRF
I just sent a check for $350 to the Juvenile Diabetes Research Foundation (JDRF). This is part of my commitment - to donate part of the proceeds from the sale of my book, "The ABCs of Loving Yourself with Diabetes," to an organization making life better for those with diabetes. If you purchased a book this year this donation was possible because of you.
Last year your purchase funded a similar donation to Diabetes Research Institute, another premier institute searching for a cure for diabetes.
Every year I'll make a donation to a diabetes organization from the sale of "The ABCs of Loving Yourself with Diabetes." So buy a book and do yourself and others a good deed.
TuDiabetes
Like JDRF, started by a few families with type 1 kids wanting to raise awareness, TuDiabetes, one, if not the world's largest diabetes social networking site, is making a similarly dramatic difference in the life of people with diabetes. TuDiabetes, the dream and vision of Manny Hernandez, is a place where almost 10,000 PWDs across the planet come together to share their stories, information, hopes, fears and inspire one another. Manny's mission is that no one with diabetes feel alone.
Manny's Diabetes Hands Foundation, from which TuDiabetes was born, is constantly active raising diabetes awareness through projects they both initiate and support. Think about lending your support as you watch Manny's video. From every dollar you donate TuDiabetes and diabetes awareness grows. I've had the pleasure to get to know Manny a bit this year and I can tell you no one has a truer heart.
Sometimes I think it's easy for all of us in this diabetes-blogging world to forget that we actually affect something or someone out there, speaking and listening virtually as we do. But as I look back on my year I know that we do.
I've written enough posts to share my personal ups and downs with diabetes and get it out of my system, for the moment that is. I've written several articles for various diabetes magazines and been advisor for a few diabetes organizations. I've seen my second book, "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" hit bookstores and receive praise from reviewers and thumbs up from readers. I've been invited to Roche pharmaceuticals' first diabetes bloggers social summit. I gave away 2,000 of my books at the International Diabetes Federation conference that are now in libraries, clinics and practitioners' and patients' hands around the world. I've traveled across the states educating and inspiring fellow patients. I've flown to England to become a more skilled health coach and been taught by two Harvard professors to enhance my skills even further. One of my aims next year is to be part of the solution helping patients improve their self-management.
Of course this all came at a cost: I traveled far and wide, met wonderful new people, made some incredible new friends and made my husband very proud. Here's to a great new year for all of us.
I posted this two years ago, and in truth, my letter to Santa hasn't changed any.
Dear Santa,
All I'd like this Christmas is for you to take this diabetes away. I'm so tired of it already. All these finger sticks and guessing when my blood sugar’s high or low. Now that I'm in menopause I can barely tell if I'm sweating because I'm losing estrogen or my blood sugar's crashing at 50! 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 lay 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, after you open your holiday gifts, look under your Hanukah 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 Years 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 so much 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 study the Torah, 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 you should 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 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 there is a gift in everything if you look for something positive 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 healthy. 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 $6,000,000 mansion in Jupiter, Florida -- right next to Burt Reynolds! Everyone’s plotzing! 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 quotation meant that we are the source of our happiness, that happiness can only come from inside us regardless of what happens in our lives. Hmmm, 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. riva
"Sisterhood of the Traveling Pants" is a sweet friendship tale of four teenage girls, lifelong friends, who will be spending their first summer apart. On the eve of their separation, they find a pair of jeans that magically fits all of them perfectly, even though they're all different shapes and sizes. They decide they will share the pants over the summer as a way of staying together while they are apart.
I have a similar story only it involves a computer bag, someone I'd never met before and less than sweet emotions.
I spied this burgundy computer bag on the second day of the International Diabetes Federation conference I attended this October in Montreal. Scads of people (true different sizes and shapes all) were walking around the lecture rooms and exhibition halls with this bag on their different-sized shoulders. Magically, it fit them all and I knew it would fit my shoulders as well. And I wanted one, badly.
Frankly, I don't lug around my computer. And I didn't want this bag because I thought it was such an amazing bag, although I do love burgundy and did get married in a gorgeous cut velvet burgundy dress... but that's another story.
No, this bag had an emotional tug on me from the moment I saw it. Having this bag over my shoulder would proclaim to the world just as it says, "I am traveling to change diabetes." It would prove membership in the club of those who work in diabetes, and be validation that I am making a difference.
This bag was my visible, tangible confirmation that these posts and my books and talking to fellow patients contributes something. With no congenial office to go to, no lunches with colleagues, drinks after work, boring meetings where everyone rolls their eyes in solidarity at the boss's obtuseness, no annual Christmas party, this bag symbolized to me below my conscious radar, acknowledgement for what I do. It was a purely immature and selfish urge to want, and to get, this bag. I also noticed that the more I saw the bag around the conference, the more my amygdala (fear-based center of the brain) was controlling me beyond all reason.
I asked at the Novo Nordisk booth if I could get a bag and was told they were only given to people who'd attended their seminar the first day of the conference. Disappointment clouded every other booth from my view.
Miraculously, the second day of the conference I attended a small party given by one of the vendors I knew whereupon one of the guests said to me, "I know Pia at the Novo booth, give her my name and tell her I said if she has any bags left to give you one. Pia's great, if it can happen, she'll make it happen." Excitement flushed my cheeks, or was it the wine?
The next day I found Pia and she said the last day of the conference they would give out their remaining bags. She wrote my name in her little red book adding each of the beautifully scribed letters to the list of the select few (trust me this is as close to VIP as I get) who would be given this treasure. "Come back anytime after 10 AM on Thursday," Pia said, "to get your bag."
I told my husband, "You see persistence pays off!" all puffed up with how pleased I was with myself. Thursday morning at 10:30, my hands hanging awkwardly by my side feeling their emptiness soon to be filled, I walked over to the Novo booth. I didn't see Pia so I asked the woman there, "Hi, my name is in the book to get one of your burgundy bags." "I'm sorry," she said, "they're all gone."
"They're all gone?" I said dumbfounded. How is this possible? My name is in the book. I'm here as I was told to be. "Are you sure?" I almost whispered, "My name's in the book." "I'm sorry, they're all gone," she said and turned away.
I could barely keep the disappointment out of my voice when someone I'd befriended at the conference addressed me minutes afterward. (Yes, I know you're saying to yourself my goodness all this fuss over a bag?! But you have to imagine this was the world diabetes conference, 12,000 people, and every time I turned crowds of them were parading by in my burgundy bag.)
My husband didn't know what to say to make me feel better. Then by accident at 2:09 PM, not that I remember, I saw Pia. "Hi, I came by earlier but was told there are no bags left?" "Yes, I'm sorry," she said, "they started handing them out early this morning by mistake and they all went in no time." After a long pause she said, "I still have one left in my office in Copenhagen. If you give me your address I'll send it to you when I get back."
Without a moment's hesitation I gave her my card and thanked her, stupidly, I'm sure I was rambling. Only as I walked away did I think the chances of her really sending me a bag from Copenhagen were slim. After all, it would be so easy to lose my card on the way home. She'd be swamped with work when she returned and this would go forgotten. Someone would have already taken that last bag from her office, or she would look at it upon her return and think it's too much effort.
But still, I waited. Hope is its own salve. I watched the mail and waited. I thought if it comes it will be in three weeks time. Certainly Pia needs some time to catch up on her work after attending this conference and it is an international package. After three weeks and no bag I kept moving my timeline out. Each day I approached my front door hesitantly, expectantly, hoping to see a package but I knew after four weeks I would never see that bag again.
Just when I truly forgot about it I came back from my morning walk and my husband said, "You got a package and pointed to the FedEx box on the floor." I looked at it and said as I sat down at my computer, "I'll open it later." My husband, having looked at the post mark knew what lay in the box and said, "Are you sure you don't want to open this? It's going to make you very happy." Not thinking about the bag at all, it took two more of his attempts for me to get up and look at the box whereupon I saw that it was from Copenhagen.
Inside was the burgundy bag and a note from Pia hoping I would enjoy the bag. Little did she know. I wrote Pia a thank you letter and sent her my books in return, yet I'm sure she still doesn't know how much this bag and the fact that she took the time and trouble to send it to me means. The fact that there are still people in this world as good as their word. The fact that what seems like a small act of kindness can be richly rewarding to another. When I give presentations now I put my materials in this bag and on its first flight out at JFK waiting to board a plane to Cleveland, the woman sitting next to me seeing my bag smiled and asked me about what I do.
Yes, it's crazy, but I proudly sport this bag as my declaration to the world that this is the work I do. That I am a member of this club. Inwardly, it's a cue to myself that what I do matters and that I belong right where I am.
On second thought maybe this tale bears less resemblance to "Sisterhood of the Traveling Pants" and more to the film, "The Red Violin," where a perfect violin is admired for its red color and passes through many lives playing a significant role. Maybe my bag's adventures from Copenhagen to Brooklyn to Cleveland, where it has yet to travel, stories it will yet engender and lives it will yet touch, is the true gift and meaning of this bag.
Hmmm...let me see, it must be at least a few posts since I last reminded you about this fantastic book I wrote that was released this summer, "50 Diabetes Myths That Can Ruin Your Life and The 50 Diabetes Truths That Can Save It." Nice thing is people keep discovering it.
I wouldn't bring it up again (well, maybe) except this morning Catherine Price not only reviews the book but also includes in her review my answers to some really great questions she asked me like: "What 3 things would you tell people about diabetes?" "What kind of policy changes do we have to make to help stop the spread of diabetes?" and "How do I personally stay positive managing my diabetes?" among other questions.
You may remember Catherine - who among her many writer hats blogs on A Sweet Life, a great savvy and diverse site that brings you news, expert advice, tips, recipes and blogs - wrote a great piece in the NY Times recently.
If you don't know "50 Diabetes Myths That Can Ruin Your Life" also has its very own web site. Now there's just no reason to let myths ruin your life.
If you haven't seen this video, Pink Glove Dance, that's gone viral, take a look. It's for breast cancer awareness and it will grab ahold of your heart.
It upends our typical view of hospitals and everything we associate with them, and the music is a foot-stomper.
You'll find yourself smiling (even if you watch it more than once as I have) or find a tear or two has crept into your eyes as they have mine, as it reminds us just by its joyfulness of our connection, and the humanity we all share.
Medline, the manufacturer of pink examination gloves, is making a significant contribution to the Providence St. Vincent Medical Center at the Portland hospital where the video was shot and offering free mammograms to the community when the video gets 1 million hits. Nice to see a company think outside the box.
The video's already gotten almost 5 million hits, but that's no reason not to add yours. Now we need one of these for diabetes awareness, don't ya think?
I truly think type 1 and type 2 diabetes should have completely different names. Yes, they both have "insulin inefficiency" and wacked out blood sugars in common, but their causes and related health conditions are different, and equally significant, managing the two are generally far from the same thing, and our lives with diabetes are far from the same.
I know this well, I don't need confirmation, yet yesterday while on the phone with three of my closest friends with diabetes I was surprised by how acute and visceral this knowledge is becoming for my type 2 friend who is learning to use an insulin pump. “That freakin’ daily log I have to keep now” she said. “I’ve worn my hands out! And, I’ve never been so attached to glucose tabs before! If I’m out gardening I’m going low. Last night I was 71 before going to bed. What do I do?!” Ah, welcome my type 2 to my type 1 world.
We four met as A1C Champions: We travel around the country giving educational presentations to fellow patients, sharing our personal story of living with diabetes hoping to inspire our audiences to better manage their diabetes. Most of the Champions have type 2 diabetes, yet not surprisingly of these four friends, three of us have type 1. Not surprising because for type 1s there is an intrinsic bond as pervasive and invisible as our condition; we see our mutual struggle in each other, we know intimately the burden we manage every day, and, that no one else sees it. That said, we three type 1s adore our type 2 friend. She is one of the most open, caring, curious and both emotionally and diabetes-intelligent people I know.
So, we were all on the phone yesterday at the request of our type 2 friend who was seeking our type 1 counsel about her pump. Her blood sugar control is far better overall, but “lows” are more frequent. “Before (15 years worth) I rarely went below 85 or 90,” she said with tempered evenness. “Now about every third day I'm going low! Even shopping can make me go low!! TWENTY MINUTES IN WALMART AND I'M REACHING FOR THE GLUCOSE TABLETS!!!
This will straighten out. She is working with her endocrinologist to refine her basal calculation (the amount of insulin the pump delivers throughout the day). Also, since her blood sugars now hover at a lower level than they used to, she's paying more attention so that they don't go too low.
My friend has discovered through this pump experience a new understanding and respect for what type 1s live with every day, pump or no pump. And I was made more aware through our conversation of just how truly unknowing others are of what we deal with everyday, even those with type 2 diabetes.
So there we were, three type 1s throwing out ideas to help our type 2 friend with her pump until she sees her diabetes educator again. “Eat the same three meals, and only three, every day for a week to figure out your basal rate.” “Get a book on pumping by John Walsh or Gary Scheiner and devour it cover to cover.” “Make sure you’re using multiple basal programs for different hours of the day and night when you need varying amounts of insulin.” “Don't just eat glucose tablets if you're low, they don't last that long. Make sure you eat some protein too." "Well it's a toss up whether to detach from the pump when you're going low to stop the insulin drip or eat a snack. Of course that could lead to weight gain." And finally, "Accept that even if you do the same thing every day your body will not act the same way every day." The true mantra of type 1.
I don't write this to discourage you if you're a type 2 thinking of a pump. My type 2 friend is definitely benefitting. Her blood sugars are lower overall, she is taking less insulin, this is allowing her to lose some weight and when not worrying about lows, which will rectify themselves once her program is worked out, she feels better and more motivated to do better seeing her numbers improve. Also, she has a real awareness now that her actions affect her results. “It’s a real eye-opener to see on paper that what I do affects everything,” she told us. “It’s made me more judicious about what I eat. I see so clearly now that I’ll have to add more insulin if I eat that. It’s made me see my management all quite differently.” That's indeed good news.
An insulin pump, I've been reading in preparation to go on one myself next year, typically reduces the amount of insulin one needs. Something about how it saturates your cells with insulin and mimics the normal functioning of a healthy pancreas. For Type 2’s the insulin requirement can drop by a third or nearly half. My friend used to give herself 4 units of Apidra (rapid-acting insulin to cover meals and make corrections) to come down 80 points, now it's more often 1 unit.
Depending upon the day, my mood, who I'm with, the conversation, whether or not my oatmeal burned that morning, my feelings about living with diabetes vary. Some days are almost a breeze, other days I'm exhaustedly fed up with all it takes and soooooo annoyed no one really gets it.
With that, I wanted to spotlight these diabetes musings that reflect only two of the many sides of living with diabetes. One is a page from my book, "The ABCs of Loving Yourself With Diabetes," which coaches you to more often engage your positive emotions - like kindness, forgiveness, strength, courage and appreciation - to manage your diabetes, and your life, with greater ease and happiness. It's featured in the current newsletter from TCOYD (Taking Control of Your Diabetes.) TCOYD, headed by Dr. Steven Edelman, who has type 1 diabetes and was named Educator of the Year this year by the American Diabetes Association, brings informative and inspirational one day health fairs and conferences across the country to people with diabetes.
Then two weeks ago, Catherine Price, a blogger over at A Sweet Life, shared her story of living with diabetes in the New York Times, "Thinking About Diabetes With Every Bite" and it was as if she was telling my own tale: The constant rigor, calculations, analysis and invisibility of living with diabetes, particularly type 1 diabetes where you must inject insulin and test blood sugars several times a day, every day, to manage it.
For me, both sitting in the positive and dealing with the sometimes grinding daily tasks co-exist - sometimes simultaneously, sometimes in parallel and sometimes at unsettling right angles depending upon the day. But always like a chronic condition they are there, the many sides of diabetes rising and falling, ebbing and flowing, expanding and contracting as we learn, move, grow, expand, collapse, relapse and press on again.
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.
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.
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.
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.
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.
Copyright ©riva greenberg 2007. All rights reserved.
