A lifetime ago, well literally half my life ago when I was in my twenties, I quit my advertising copywriting job to design and write inspirational greeting cards. I was taking some personal growth trainings at the time and wanted to share my newfound key insights with the world. I actually did create the cards, get them printed, get them sold and four years later, still a starving artist, get a "real" job.
But what I wanted to teach others has never gone away. What I learned during that time of training and years of reading are life principles that affect the quality of our lives, and as Oprah says, "When we know better we do better." So, here is what I know for sure:
1. There's a pay-off to everything we do. You may not think so when you're miserable but whatever you're doing, crying in your beer, moaning on someone's shoulder, letting guilt fill your day, playing the victim with diabetes, it's comforting to you in some way.
2. You will tend to get what you expect. If you want more, raise your expectations. If fear of failure is paralyzing you, lower your expectations.
3. "Act as if." When you don't feel it, act as if you do: happy, confident, strong, whatever. Who's to know that's not really you? Certainly you've been these things at various times before. By pretending you feel a certain way, you will begin to. The world then responds to you in kind, as it does all the time, actually.
4. What is, is. You may not like what is, but it's what you've got in your deck to play with. All you can control is how you play your cards. You can always add to your deck of course.
I am coaching a young woman in her early twenties who has type 1 diabetes. She has had diabetes for about 10 years and is going through an emotional storm: a bad break up with her boyfriend, a death in the family, financial strife and more. The immediate ramifications for her have been a loss of interest in her studies and future, which she was so enthusiastic about previously and out of control blood sugars. Due to months of stress her blood sugars have been consistently high causing her to lose 20 pounds with no effort - her body is not absorbing the calories she eats. Her emotional storm has unmoored her from her good diabetes habits - she is eating erratically, missing meals and not covering her snacks or correcting her high blood sugars, all of which she used to do.
During our coaching session my job is to ask her questions to spark her thinking in a way other than she has been thinking. When we are stuck in a problem it's very hard to think outside our usual box. And, as much as I want to give her the answers I think I see for her, they are not her answers. She needs to delve down and come up with what will work for her. Trust me, this is hard work. Both for her and for me. Real thinking takes time and effort. Much of her thinking will actually happen after she leaves me because I have stimulated it and it will continue. Holding my tongue while she searches for her own answers is hard work for me. But I know that she must remember what she already knows, reflect back on what she's done in the past that's worked and determine what she truly believes she's capable of doing and willing to do. In short, only she knows what will work for her in her life. In this scenario she is the expert, I am only a tool.
At the end of our time, however, I do, with her permission, share a few of my own thoughts and suggestions. And as I look back now on what I told her, I see it is very much based on the four principles above.
I pointed out to her that while it's hard to see it, there's a pay-off for this unbearable sadness she is nursing. Maybe it reinforces her sense of herself as not being a very good person and it is always comforting to be right about what we believe. As for expectations, she is already talking about likely failing this semester as she is not paying attention in class. I reminded her that the expectations she plants she will likely create. Alternatively, I suggested she "Act as if" she is fine, her old self, confident, an interested student, for instance, while in class. At least for the periods of time she can sustain it. They will grow longer.
I suggested she spend up to 30-60 minutes a day obsessing about her worries. And when blue thoughts roll in, in as they will, save them for that period when she will indulge them. Sometimes you just have to cut off non-constructive behavior. The rest of the time I suggested she be as fully present as possible wherever she is and employ the "act as if" principle. Lastly, I reinforced that she move forward with the small steps she identified that she could take to move in the direction of the life she once dreamed of and still wants. Covering her emotional eating with insulin is a step she identified that she can and will take. The results of this will likely be a little better blood sugars, a little less stress, a little more ease and a little light streaming into her world that now looks so dark. Each step we take creates a ripple effect: one positive step puts you in a more positive upward spiral.
It's not rocket science, but when the world is on tilt it's hard to see where you stand. I learn a lot when I coach someone. I learn to listen harder and more openly. I learn myself to be more present in the moment and not finish someone else's sentences, not even in my mind. I learn we each see the world differently, operate in the world differently and prioritize differently. And, her emotional storm has reminded me just how dependent good diabetes care is on how the rest of our life is going. So along with the four principles I'd like to add this one specific to diabetes: Don't just tend to your diabetes, also tend to your life. And don't just tend to your life, also tend to your diabetes. They are intertwined.
Enter your video
Grab a videocam and help us all make sense of diabetes. Manny Hernandez, founder of Diabetes Hands Foundation and the social networking sites, TuDiabetes and EsTuDiabetes, is at it again - making the world more aware of diabetes and, specifically, how it feels to live with diabetes through a new, exciting contest called “Make Sense of Diabetes.”
Anyone with diabetes over the age of 18 can record and submit a video to MakingSenseofDiabetes.org (up to three minutes run time) that demonstrates life with diabetes through one of the five senses. The online video submission should express creativity and originality, be truthful, and convey emotion in a compelling, evocative and personal way. Winning videos will premiere around World Diabetes Day, November 14th.
Of course you don’t have to shoot meds to enter. Whether you control your diabetes with diet and exercise, oral medication or an injectable, you're part of the diabetes community. Beside my gross, little play on words, I do like the cleverness of Manny's contest title, Making sense of diabetes. After all, we live diabetes through our senses every day and every day we need to “make sense” of diabetes to go on.
In thinking about my sensual experience of diabetes, here are my first impressions:
Sight – I see so many patients who need knowledge and information.
Hearing – The world is 25% harder for me to hear
Taste – The smooth, sweetness of my beloved 85% Lindt chocolate, often a nightly treat
Touch – The unexpected sting when a shot hurts and nearly takes my breath away
Smell – The subtle rubbing alcohol smell of my insulin when a drop leaks from my syringe or insulin pen
Contest begins September 28 and lasts through November 1. For more details click here.
Contest sponsor: Boehringer Ingelheim. According to the press release BI is one of the world's 20 leading pharmaceutical companies and committed to researching, developing, manufacturing and marketing novel products of high therapeutic value.
Muchas gracias Georgina
Nice when you enjoy your own work
Translation: "The ABCs of Loving Yourself with Diabetes." This Spring my ABC book came out in Spanish due to the unprecedented hard work of its two translators: Georgina Baez-Sommer (pictured here) and Amparo Fernandez. How lucky was I to have two translators from the United Nations! In truth, I'm not that special but beside being a dedicated professional, Georgina also happens to be my neighbor's mother.
I decided there isn't enough literature to help Spanish speaking people with diabetes, the Hispanic population being one of the highest risk groups, so voila, a coaching book in Spanish.
"The ABCs of Loving Yourself with Diabetes" guides readers to use more positive emotions both in life and in living with diabetes, for one enhances the other. For instance, if you appreciate all that you do have in your life - friends, family, work, a hobby you love, you experience life as a happier place. Being happier makes managing diabetes a little easier. If you forgive your mistakes with diabetes and see them as learning opportunities, you build a databank of diabetes knowledge and more resources to do better next time. If you're struggling with something in your care and can look back to when you've managed difficult times before and bring those same qualities and skills to managing your diabetes, you will do better.
Among the emotions you'll learn to augment are courage, confidence, joy, awe and pride. You deserve to be proud just because living with diabetes is an ongoing job. Pride in a job well done is a powerful source of energy and healing. In truth, all we have power over living with diabetes is how we live with it: graciously, responsibly, lovingly and kindly or angrily, guiltily, sadly, beating ourselves up and everyone around us.
Anyway, just wanted to remind you The ABCs is available in Spanish and share these lovely pictures. Now it's up to you to do the rest.
My second and third post went up at Diabetes O.C. so have a look. That lets me off the hook for at least a few days I figure.
Post #2: "How Meaningfulness Makes a Difference." I promise you'll be intrigued.
Post #3: "Following a CDE in Buffalo." Yes, I know sounds like a bad joke!
Lying in bed at 6 A.M. a few weeks ago I felt a sting and when I brushed my hand against my wrist, felt something fuzzy there. I didn't know it but I had just brushed off a hornet or wasp or bee that had stung me. I jumped out of bed, ran to the kitchen to inspect my throbbing wrist, ran back to the bedroom (mind you these runs are only 10 feet long) to wake my husband. We turned on the light and there was my attacker on the wall near the lamp on my dresser. I began to freak out.
While I expected my husband to nurse me in some way, he sat down with his computer on his lap, his typical early morning work routine. I was flabbergasted until he began reading off a web site what to do for bee stings. As he read the anaphylaxic (allergic reaction) life-threatening symptoms: throat closing, light-headed, dizziness, weakness etc, I was having them all. I was so weak I had to sit on the kitchen floor, my head spinning and my legs falling out from beneath me. Then through my fog I heard my husband's voice, "Check your blood sugar, check your blood sugar, check your blood sugar." With shaky hands I did and it was 57, most likely the cause of my weakness and shaky symptoms -- along with a good dose of panic.
After I gobbled some glucose bits, my blood sugar returned to normal but my panic was only slightly abated. I've never been stung by a bee. How serious is this? My Aunt is allergic, if she gets stung I know she can die. Is there a stinger in my wrist we have to get out? We followed all the steps advised on the web site should there be an embedded stinger and then I said uncharacteristically, "Let's go to the ER." It was Saturday and I knew I couldn't reach my doctor.
We walked the six blocks to the hospital, and as we walked I questioned whether I really needed to go. But I was worried and wanted someone to tell me it was O.K. so we kept walking.
Entering the ER was nothing like on TV.
We arrived at 7:15 A.M. Only two people were in the waiting room and I thought this is great, I'll get seen soon. Then the drunk showed up strolling the room and talking aloud to no one and then the woman who'd been sitting there quietly started yelling and every 10 minutes went to the public phone nearby to yell to someone how much pain she was in and no one was paying attention to her. More like she was off her meds. I saw they paid attention to her when security finally came to calm her down. What a freakish scene I found myself in, on an early Saturday morning, in a place I've never been, hoping for quick medical attention.
When we had first entered the receptionist asked me a bunch of questions, only one having to do with my bee sting, and typed my answers into her computer barely looking at me. A half hour later I was called up to another desk where the woman asked me the same questions and typed my answers into her computer. As I tried to engage in at least some conversation, we spent more time talking about her failed diet than my bee sting.
When I finally saw a physician's assistant, 3.5 hours after arriving, including the one hour wait after being called into the inner sanctum of the E.R. where I was utterly ignored, she told me all looked fine, go home and take some pain reliever.
In truth, I was relieved to hear a medical person say, don't worry, it's O.K. I guess that's what I came for. And I surely understand that if there were people arriving on stretchers then my bee sting could wait. But having one simple nurse up front could have sent me home in less than a half hour and receiving one simple smile could have ameliorated the cold, fearful wait.
As I left I thought let me never come back here again unless it's through the back door on a stretcher.
This week I'm the guest blogger over at Diabetes O.C., a great place to hear many patient voices and a growing resource site.
Take a look.
Today's topic is what else - diabetes myths!
For the first time in I don't know how long I'm keeping a log of blood sugars. No kidding, it has the blood smears throughout to prove it.
The reason? Two weeks ago I started with a new endo whose main task has been adjusting my insulin dose and when I take my Lantus so I have less lows. Personally, I wasn’t particularly concerned about my once or twice a week low, and I particularly liked that my A1cs are in the 5’s, but endo said the fluctuations in blood sugar irritates the blood vessels and it would be healthier to be mainlining more around 100 and up to 140 two hours after a meal.
That meant two changes: 1) Cutting down from 14 of Lantus to 10 units and 2) Switching my Lantus from before breakfast to before bed. Switching to before bed was to override the morning highs (dawn phenomenon). My sugar was rising so fast in the morning it was thought my Lantus wasn't lasting 24 hours and by moving it to before bed I'd have better coverage for the morning. I'd been taking a first dose of Apidra by 7 AM to blunt my blood sugar rise and then a second dose for breakfast. The cutting down on the amount of Lantus I was taking was because endo thought I had too much Lantus in my system overall the 20 or so hours it is working, and it may be contributing to my lows.
But cutting back to 10 units, the immediate result was HIGH blood sugars. I was freaking out. And, I had such unpredictability with my numbers that I was unexpectedly at a loss how to deal with my rapid-acting mealtime Apidra. I had had my routine sooooo down pat before this all started that this lack of control was, and is, driving me insane. So we upped my Lantus to 12 units which seems to be working a little better except for the 261 I had out of the blue after lunch the other day and the 30 that awoke me at 2 AM with my heart beating out of my chest.
I’m not liking this new routine much. Can you tell? The unpredictability is driving me nuts, did I say that already? If so, it's worth repeating. But, I have to commend my endo for checking in with me weekly to discuss my numbers and for listening to my frustration. That can't be fun. I'm giving endo another half point.
And I’m going to give this new regimen, which now includes dosing my Apidra for dinner higher since those evening hours may be when my Lantus is wearing off now, another week to see if things settle down, which I tell myself daily, hourly they will. And while I wanted to jump ship this morning and go back to my old ways, endo said let's give it another few days and I know endo is right. I know I am biting at the chomp to cut the process short because I'm so impatient to be back in control. However, this morning endo revealed another reason to try and get my sugars to be more consistent: lows can lead to insulin resistance. Oy!
One thing I can say from all this stomping around in my sugars is I see a clearer case, personally, for using a pump. To have as I’ve always described it, “more elegant control” - greater flexibility in the moment and to be able to preprogram for more and less insulin as the body needs it at various times of day. Personally, I was waiting for the pump to get small enough that it wouldn't feel like an intrusion on my body, and it seems to have done just that with the soon-appearing-near-you Solo MicroPump.
So while I’m still futzing around with my calculations I can offer you some advice from two diabetes educators I checked in with about what the ratio should be between your Lantus and rapid acting mealtime insulin if you use both.
How much to dose: “Historically/Mathematically the total daily dose of insulin (both Lantus and Apidra or Novolog or Humalog) would be divided in half, Lantus being half and the prandial (mealtime) insulin being the other half which is then divided further by 3 to give the dose before each meal. This usually coincides with eating a minimum of 30 - 45 carbs/meal. Not everyone's body, however, matches what can be figured out mathematically. But it's a place to start and then you tweak it just like you are doing.”
My other educator added that since I eat a low carb diet, maybe 15 grams of carb/meal at most, except for breakfast, that I shouldn't expect my Lantus/ Apidra ratio to be 1:1 but more like 2:1.
General rule for where your sugars should be: 80-100 before meals, 125-140 post meals and 120-140 before bed.
My advice: Find the best match between your medicine and your blood sugars even if it takes some doing. Make it a priority - both for your diabetes health and your peace of mind.
I've just returned from Worcester, Massachusettes where I spoke to a group of about 100 patients about a lot of confusion around insulin. It was a great group, it was a great talk. The audience, largely type two seniors come from near and far to attend this monthly support group. They were curious and engaged and I always get energized when speaking to such a group.
Yet, as educated and committed as this group is to their knowledge and care, there were still some myths about insulin and diabetes that they believed. It was great to see light-bulbs go on all around the room as they learned the truth.
Myth: Shots hurt. People envision the big syringes and long painful needles they sometimes get a shot with at their doctor's office.
Truth: Shots rarely hurt. Needles are as small as 1/4 of an inch and extremely thin. Also, the needle goes into the skin where there are few nerve endings.
Myth: If I need insulin, I've failed. It's understandable you might think this as doctors often present and use insulin as a last resort.
Truth: If your doctor recommends insulin it's because it's the best treatment to manage your blood sugar. Increasingly the American Diabetes Association is recommending earlier intervention with insulin to get patients under better control quicker.
Myth: People who use insulin have worse diabetes. After all if you have to take shots it must be really bad.
Truth: People who do not have control of their blood sugar have "worse" diabetes. Unmanaged blood sugar over time leads to diabetes complications and that's as bad as it gets.
Myth: Only people with type 1 diabetes can wear an insulin pump.
Truth: Most people who wear a pump have type 1 diabetes because everyone with type 1 is on insulin, but many people with type 2 who take insulin also wear a pump.
After my presentation the questions came fast and furious and I realized once again how much I know having written my recent book, 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It." As the title says, myths degrade the quality of our lives and accurate information empowers us to live well. You'd be amazed how much you believe is true about diabetes, isn't.