I started going to the gym before my family gets up in the morning
I contacted the Kovler Diabetes Center to join their MODY Registry
The Prompt (suggested by Hillary at Rainie and Me):
We don’t always realize it, but each one of us has come a long way since diabetes first came into our life. Share the greatest accomplishment you've made in terms of dealing with your diabetes.
In 2004 my first child was delivered via c-section. The c-section was planned, as was most everything about the pregnancy:
The switch, prior to conception, from oral medication to insulin (MDI - Multiple Daily Injections)
The counting of carbohydrates and adjusting of doses as hormone levels changed
The umpteen appointments with the endocrinologist, obstetrician, and perinatologist
The very many ultrasounds
And the birth plan that specified the endocrinologist’s favored delivery time: 11 AM
While I was grateful to be pregnant, I did not love the experience of it, as many women do. Instead, the frequent monitoring served as a constant reminder of the risky environment I felt I was providing for our growing fetus. Having a birth plan felt reassuring.
I was relieved and excited when the delivery date arrived. September 10, 2004 was a busy day in the labor and delivery wing. (Evidently, I wasn’t the only soon-to-be-mother hoping to spare her child a September 11th birthday.)
Despite my most proactive efforts, 11 o’clock came and went.
“Excuse me, my c-section was scheduled for 11 and it’s 11:30 now. I have diabetes. My blood sugar’s okay right now, but I haven’t eaten since 9 last night.”
“Excuse me, I can see you’re busy, but I was supposed to have surgery 90 minutes ago. I have diabetes and I haven’t eaten in over 15 hours…”
I continued politely bothering the busy hospitalists. Eventually, 2 hours after the scheduled time, off we went to the operating room. I met the team, got hooked up to some equipment, was anesthesized, and within about a half hour everything was underway. Probably sensing that I'm nervous about the surgery, my OB made light chit-chat:
OB: So, Emily, do you guys have a pediatrician picked out? Me: We do – it’s Dr. Papadopoulos. OB: Aww, he’s terrific! And such a nice man. Here’s a challenge – can you spell his last name?
[That I cannot spell the pediatrician’s long, Greek name doesn’t surprise my OB. It surprises me, though, as I’m generally a good speller. It’s my first clue that something is amiss.]
OB: (New topic) So, when you're in recovery where should your blood sugar be? Me: Well… Mmmmm... I think... Whatdidyousay? (Is that slurring?) OB: After surgery – your blood sugar. Where does your endo want your sugars? Me: (Can’t. Quite. Reach. The Words.)
Something’s wrong, I think.
I manage to ask the anesthesiologist if the anesthesia is scrambling my thoughts. Nope. Something’s wrong, I think.
“Something’s wrong,” I say, “I’m low. What's my blood sugar?”
Anesth: Where's your meter? Me: I’m in surgery..I'm naked. I don't have my purse. Anesth: I don’t have a meter.
Me: But – the plan... the blood sugar... how will you know if I need insulin? Anesth: We’re not doing any of that. Me: But, the plan...! I'm low. I'm very, very low.
[I’m not thinking anymore about the baby, or about being cut open. All I feel is the panic of an extreme low. A low that the plan – the one that nobody is following – was designed to prevent.]
I want my OB to remind everyone of our plan, but at this moment she’s tugging the baby out of me. I can’t catch her eye. I’m not her priority and I feel very afraid.
I hear the anesthesiologist say, “There's no meter; every floor is supposed to have one.”
I'm not a player in this scene anymore. I am tired. I close my eyes so I can focus on listening, which now requires some effort.
I hear someone say, “Get her some orange juice.”
I hear my husband ask, “Are you sure you can give her orange juice during surgery?”
I hear a code announced over the PA system.
I start to wonder about the code, but doing so takes too much effort.
I hear drawers opening and closing. They sound like the junk drawers in our kitchen at home. The ones that have AAA batteries rolling around inside. I don't feel afraid anymore. I feel tired and calm and focused and I wonder why a drawer in an operating room contains AAA batteries. I'm aware of the chaos around me but I feel detached and too tired to care about it.
Somebody finds 500cc of dextrose in a drawer.
10 seconds and I feel the change. So much faster than juice.
Someone asks how I feel.
“It's helping. I'll feel better soon.”
“You have a beautiful, healthy baby girl.”
I smile from the post-low haze.
It will be hours before I really feel better, but this lovely baby helps a lot.
This post was written for Diabetes Blog Week
The Prompt (suggested by Jasmine at Silver-Lined): Share a memorable diabetes day.
Six months ago my long-time and most trusted endocrinologist suddenly stopped practicing. The prospect of having to replace her was unsettling – after years of working together, she knew my disposition, motivation and relevant goals and shortcomings. All that knowledge translated into effective care. Transitioning to a new endocrinologist meant starting over from scratch.
Last month I met my new team and was struck by how different their model is from that of my previous team. I’ll still have an appointment every three months, but at those visits I’ll alternate between seeing the endocrinologist (every six months) and either the Nurse Practitioner or the Certified Diabetes Expert/Nutritionist.
While I appreciate the emphasis on specialized care, I wonder how easy it will be to build relationships within this structure. I believe patient/medical team relationships are closely related to both the quality of care I receive and my own motivation. So I have some concerns. With these in mind:
I Hope My New Health Care Team Will Understand: Diabetes is demanding. Managing blood sugars is a never-ending exercise in planning, calculating, adjusting, and refining. And the resulting numbers don’t necessarily reflect that effort, which can be enormously frustrating. Diabetes is also pretty solitary.
Because of that, I hope the new team won’t say things like: Your blood sugars look awesome. Keep doing what you’re doing!” A comment like that, from my medical team, will make me feel like diabetes is mine alone to understand and manage. I suppose for a few hours a year, I’d like it to feel less that way.
I hope instead they'll say:
“Your blood sugars look awesome. You’re doing a great job and we know it’s not easy. Stick with it – because all the that work is paying off. Here are some ideas that may make things easier and help you get even better results.”
What I Hope My New Health Care Team Doesn’t See (just yet)
I replace my blood glucose meter about every 5 years (not the recommended 1-2 years).
I change the lancet maybe once a year (not with every test, as recommended).
I do not store ketone strips properly (nor do I replace them when they expire, as they did in 2010).
And while on the subject of expirations, my glucagon pen expired in 2007.
It’s not that I wouldn’t disclose this information; it just feels a little early in our relationship.
This post was written for Diabetes Blog Week
The Prompt (suggested by Melissa Lee at Sweetly Voiced):
Often our health care team sees us for just 15 mins several times a year. What do you wish they knew about your and/or your loved one's daily life with diabetes? What do you hope they wouldn't?
I have mixed feelings about these gifts in part because of an illuminating story I heard in 2009 on This American Life that discusses the origin of prescription savings cards and their role in driving up the cost of insurance premiums. (If you’re curious, listen to This American Life’s Episode #392: Someone Else’s Money.)
Back to the gifted meter – I’m already acquainted with this device because just two weeks ago my endocrinologist suggested I consider getting one. In fact, she gave me the very same discount card. Was she recommending the meter because of its accuracy? No, not necessarily. But with Medtronic having acquired Bayer in 2012, she hoped that the strips might become more affordable. Hmmm. As she handed me the savings card I silently regarded her and wondered if she listened to This American Life.
In truth, I probably should replace my meter. Per their manufacturers, for the sake of accuracy, meters should be replaced every year or two.
And the back up for the back up? Abbott’s FreeStyle – 1998. So old I can't even find it online anymore. [And yet, it's my all-time favorite – both the smallest and the one that requires the tiniest drop of blood.]
Glucometers are essential for diabetes management, but the cost to use them is substantial.
The meters themselves are a one-time cost (and can often be obtained for free). It’s the strips that add up. As my husband likes to say, “That’s how they getcha.”
I currently spend around $36 for 100 test strips. Largely because of the expense, I test my blood sugar only a couple times of a day. The savings card would make my pharmacy co-pay very affordable (at least for the first 12mos). I would pay $15 instead of $36, so for less than half the cost, I could test more frequently and have more data. The temptation is real; diabetes is expensive.
What would you do?
Highlight the three lines below this sentence and you’ll see what I plan to do.
I’m going to give this meter a try and see first how I like it. I’m also going to bring it with me to my next endo appointment and test right after my doctor collects my blood sample. That way, I can compare the accuracy of its results with the ones from the lab. If this meter has the best results, I will use it.
Remember that scene in Super Size Me - the one where Morgan Spurlock eats a McDonald's meal in his parked car? It made me so twitchy I contemplated leaving the theater. It's been years since I saw it, but thinking about how that scene made me feel inspired me to look up the carbohydrate load of a typical McDonalds meal:
152g of carbohydrate. That's more carbohydrates than I consume in a typical day (and I'm not walking around hungry).
We live around the corner from Park Burger. Our kids love it (who wouldn't?) so we eat there a few times a year. I usually order the turkey burger, no bun, on a bed of greens. (No, I am not vegetarian.)
Not long ago, I emailed the restaurant and inquired about the number of carbohydrates in the veggie burger. I had eaten it once and it was delicious, but tricky to dose for - what exactly was in it, and in what amounts? What was used as a binder? Really, the carbohydrate and fiber information would be sufficient. The chef-owner replied in a very nice email that he was unable (unwilling?) to provide the information I was requesting. Alas, by that time, I'd thought so much about the veggie burger, that I really wanted one.
I rallied my family for dinner, having decided to take my chances.
As soon as we sat down, I tested my BS: 83 mg/dL. A pre-meal ideal.
Service being quick, I wanted to dose immediately, and so began my quiet calculations. I recalled the burger as a grilled grain-and-bean-based patty, not enormous. But which grains and which legumes? Surely brown rice. Lentils? Black beans? I settled on 40g/carbs for the burger, plus 30g total for the beer, salad and my share of the fries, subtracted my best guess for total fiber, and in the end dosed to offset 62g/carbs. Conscious of the role fat plays in metabolizing carbohydrates, I didn't want to risk creating a stubborn, lingering high. So my estimate was generous. In a matter of clicks, I was set. And when dinner arrived, I savored every bite of that very fine burger.
Two hours post-meal, with some trepidation, I tested my blood. 83 mg/dL! Amazingly, the post-meal blood sugar exactly matched the pre-meal one. That lucky occurrence happens only a handful of times a year. And it makes me giddy, like I've won a prize.
There are dozens of reasons why I won’t hit the lucky numbers the next time I eat at Park Burger. Even if I eat the same meal at the same time of day and dose exactly the same, my pre- and post-meal numbers won't match. But for that one moment it was a thrill to experience a seamless surrogate pancreas.
At a recent annual physical, I was discouraged to see that despite a healthy diet and more frequent trips to the gym, I was gaining weight (the unwanted, non-muscular kind). “How could this be?” I asked my doctor.
Dr: [glancing at medical record] Let’s see… oh, you’re turning 40 next week. Happy Birthday! And welcome to your 40-year-old metabolism. Me: For real?Doesn’t reaching my target A1c count for anything metabolically? Dr: Nope. Me: Here’s the thing: I don’t want to gain weight. Dr: Great! Do you count calories? Me:(Pause) No. I don’t count calories. Dr: Have you ever counted calories?” Me: No. I count carbohydrates.
(She’s my endocrinologist. She knows I count carbohydrates. And fiber. She knows I consider exercise. And stress. And how much sleep I got last night. And what time of the day it is. And what day of the month it is. Every. Single. Time. I. Eat. Calories? Hell, no!)
Dr: Okay, so from now on you’ll count carbohydrates and calories. (I’m sorry, did you not hear everything I just thought?) Dr:You get 1,500 calories per day. 50% carbs / 30% protein / 20% fat.Got it?
(Damn you, slowing metabolism, how dare you take more fun out of eating?
But… I don’t want to gain a pound a year either.)
Me: Okay. I’ll do it. I’ll get an app.
That night I downloaded LIVESTRONG’s Calorie Tracker app and played with it for way longer than I should have. It's pretty cool. It incorporates a large database with nutrition info for most of the foods I eat. There’s a place to track exercise. At a glance I can see progress toward my daily calorie threshold. I like this app! It’s going to help me reach my goals. It’s even going to remind me to drink water. Awesome.
The following week, my schedule was dreamily predictable. I exercised, ate, worked, and slept at consistent times. I had complete control over the carbohydrates in my meals. There are were no unexpected twists, no curve balls. It was the perfect week to be a carb-and-calorie-counting diabetic.
But, really, who has weeks like that? Life is full of schedule-wreckers. Within three weeks I had fallen off the calorie-tracking wagon. And yet, I like Calorie Tracker and continue to reference it for counting carbs (and the odd calorie).
But as far as a strategy to prevent weight gain, it’s more time in the gym for me.
And maybe I'll consider drinking my coffee black.
Three mornings a week, I head to the gym, dial down my insulin, insert ear buds and spend 45 minutes ellipticizing. There's a lot of motivation: I want my clothes to fit, I'll enjoy the post-exercise calm, I want to model healthy habits for my daughters, etc. But really gets me out the door is knowing that I'll be able to dial back my insulin by about 15% for several hours following the workout.
This morning I broke from routine and attended a WillPower & Grace® class taught by my friend Jen. The class was part of the One Billion Rising movement, which is itself pretty fantastic.
I was apprehensive about trying to keep pace with the über-fit regular attendees. But the class was terrific. I worked hard, broke a sweat and stretched long-forgotten muscles.
And! Just before the class started, I saw a woman I recognized. Where did I know her from? Work? The neighborhood? Then I noticed her wrapping the plastic tubing around her insulin pump. And I remembered meeting her last summer at our kids' swim lessons.
We chatted briefly this morning after class, exchanged contact info and just appreciated the ease of connecting with someone who "gets it" without explanation.
I love my endocrinologist. She’s research-minded, supportive, sees the big picture. In eight years she has adeptly co-managed my endocrine system through a pump transition, two pregnancies and steroid treatment for a ruptured disc.
Which is why I was hugely disappointed to find among the usual bills and assorted holiday cards the following letter from her office:
I wish briefly for a Netflix-style doctor selection tool where I can filter for all the characteristics I'd appreciate in a new endo – respectful, empathetic, personable, sincere, irreverent, research-minded, knowledgeable about MODY…
And then I tap my local advisors – the people with diabetes, the physicians, the fantastic moms. I get several solid referrals and make an appointment for April with someone new: Dr. G. And if she’s not super awesome, I’ll move to the next on the list. Because I really want a good fit with this doctor.
I change my pump's infusion set every 2-3 days. Today happens to be a site-change day. I considered documenting the process for you, but a quick search on YouTube yielded plenty of good examples of people changing their sites so I just picked one I liked to share with you.
I talked with my friend Katie yesterday. Her six-year old daughter was diagnosed last year with T1 diabetes. Among other things, we talked about insulin pumps and she asked how I like mine. I love my insulin pump (it's a Medtronic MiniMed Revel Pump). But I didn’t always wear one, and in talking with Katie I remembered that it took me a while to warm up to the idea. I had to overcome some worries which felt big at the time.
These were my fears:
Pump Fear #1: Malfunctions What if the software malfunctions and delivers too much insulin? I looked into it and learned that multiple safety checks are built into pumps to prevent such malfunctions.
Pump Fear #2: Becoming a Cyborg I'm not a big on accessorizing. Could I really have a battery-operated, external, plastic pancreas connected to my body 24/7? I felt self-conscious for about a week. Now the pump is part of me.
Pump Fear #3: Having Cyborg Sex This one I addressed with my (super awesome) endocrinologist:
So… even if I temporarily disconnect the pump, the plastic port remains attached to my body?
Yes. All the time?
Yes. When I swim?
Yes. When I bathe?
Yes. So. Um... the plastic port, it's still affixed to my side or thigh during sex?
Yes. Ok, then.
Turns out it's no big deal. I’m aware that the port is there but it doesn’t bother me (or my husband for that matter). Total non-issue.
Pump Fear #4: Nighttime Low What if I go too low during the night when I’m asleep and I never wake up? OK, so this one's still a worry. But wearing a pump hasn't made it worse.