Of all the “hot-button” words around diabetes, the one that rubs me the wrong way is “diabetic,” but only in certain contexts.
I don't mind when it describes a thing – diabetic neuropathy, diabetic glucometer, diabetic low – no problem. But diabetic patient. There’s an eclipsing of the person there that makes me a little twitchy.
But when it becomes a full-on noun, as with the diabetic who lives on my street? That's when I clear my throat and shift uncomfortably in my seat. To me it's reductive – the disease is defining the person. And there’s a connotation of permanence that I find dispiriting. At least “a person who has diabetes” might some day get rid of it...
This post was written for Diabetes Blog Week.
The Prompt: Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. Some don't care, others care passionately. Where do you stand?
I was diagnosed with diabetes the summer before my sophomore year of high school. The initial treatment plan? “Take 2.5 mg of Glyburide daily and restrict sugar intake.” Because it was 1987 and glucometers weren’t available yet for home use, I was sent home with Tes-Tape® and instructions to test my urine about once a week or “whenever I felt like my blood sugar might be running high.”
For those who don't know, Tes-Tape® was a roll of litmus paper. You’d tear off an inch or so, pee on it, watch for a change in color, then compare the color to swatches on the back of the container. The darker the the paper, the greater the concentration of glucose in your urine. (For kidneys to spill glucose, your serum glucose level has exceed 180mg/DL, high enough to be causing damage. And by the time it shows up in your urine, it's likely been that way for several hours.) So, any color at all on the test strip indicated some degree of bad news (with no strategy for correction).
I carried the Tes-Tape® with me every day at school, zipped in an interior pocket of my backpack. I was supposed to have it with me, so I did. But I never, ever, would have used it while at school. (If you've ever had to pee on a narrow, inch-long strip of paper, you get it - it's messy!) So, no, I didn't test my urine in a high-school bathroom stall. And I didn't talk about diabetes much at school. None of my friends had diabetes. None of my friends' friends had diabetes. No teenager I had ever heard of had diabetes. And, like many teenagers, I just wanted to be perceived as normal.
Over Spring break that year I visited my friend in upstate New York. At some point during the trip, her aunt asked me, “I hear you’ve been diagnosed with diabetes, how is that going for you?” I answered that it was OK, but that it was kind of drag not to be able to eat everything my friends ate. She listened, and offered this perspective:
Had I ever considered how movie stars ate? She went on to describe that movie stars - who lived lives of luxury and could eat anything they chose, elected to limit their intake of sugar because it was bad for their bodies, bad for their complexions, and contributed to premature aging. She wondered, had I given that any thought?
I had not, and it got my attention. What I heard was not so much the promise of everlasting beauty, but the message that I fit diabetes into a broader, more appealing framework, as long as everything was aligned. I didn’t have to decide that I was deprived of sugar; I could simply bypass it in favor of something better, like ripe, seasonal fruit. I remember this conversation often when I reach for a luscious pear instead of, say, a sugary doughnut. "What would Jennifer Anniston do?" I think.
This post was written for Diabetes Blog Week.
The Prompt: How does diabetes affect you or your loved one mentally or emotionally? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?
Today’s Prompt: Why are you here, in the diabetes blog space?
In early 2004 I was pregnant with my first child. I had recently switched to insulin therapy since the pills I had been on for years were not FDA-approved for pregnancy. So, I was learning to count carbohydrates, manage multiple daily insulin injections, and minimize the effect of fluctuating hormones on blood sugar. I was excited about the eventual baby, but felt acutely overwhelmed and isolated by diabetes. I pined for someone who understood what I was experiencing.
I searched online and found a diabetes message forum run by the Joslin Diabetes Center. I drafted a short post describing my situation and asked if anyone could relate. When I logged on later that day I found FIVE friendly, supportive responses. One that I found especially encouraging was signed "Type 1 Mom of two grown sons, 20 & 23."
Years later I came across Kerri Morrone Sparling's highly relatable blog Six Until Me, and was again inspired by (wait for it...) a person with diabetes talking about what it's like to have diabetes. When I had trouble finding blogs specific to MODY (my form of diabetes), I realized I should start a blog of my own and contribute something to the conversations!
To learn why other people blog about diabetes, click here.
I've never been much of a runner. So I downloaded a running app and started training the next day. I registered for a local race (Denver’s Adelante! 5k). Then I recruited a few pals to run with me once a week. The other days I ran on my own. In time, I began to look forward to the trainings as a way to spend time with people I don’t see often enough or to just zone out and listen to music.
With 7 weeks of training under my belt, I was feeling reasonably prepared on the day of the race. I ate an apple, drank some water, and stashed a juice box in my jacket pocket, just in case. My family came with me to cheer me on (it being Mothers’ Day, what choice had they?). I ran most of the way. And since I wasn’t running for any particular time, I was happy to complete the course in 36:12.
The numbers I care more about are the ones on my meter. And I was less happy with those yesterday. Given that I’d been testing and adjusting for weeks to determine a sensible strategy for the run, I was vexed by my body's response. Here’s what the day looked like in diabetes terms:
Eat apple (skip bolus)
Preventively, to avoid mid-race low.
Decrease basal rate by 20%
Run (mostly) for 36 min.
Check site (it’s fine).
Bolus 2.5 units
Hope that’s not too aggressive.
Ponder test strip inaccuracy.
Verify recent changes to pump settings.
Second-guess skipping the apple bolus.
Second-guess the 20% basal decrease.
Bolus 1 more unit.
Spot a few air bubbles in line.
Open new vial of insulin.
It’s time anyway.
Continue to bolus against a stubborn high for most of the day.
It’s difficult to convey how damn squirrely diabetes is to people who don’t live with it every day. The best-laid plans often deliver uncertain results. It can be super frustrating. And yet, diabetes didn’t spoil yesterday; my first 5k was rewarding and fun.
This post was written for Diabetes Blog Week.
The prompt (suggested by Kim of Texting my Pancreas): Change the World.
By all accounts, participatory medicine is a growing movement. And The Pew Internet and American Life Project, which studies such trends, reports that people with chronic conditions (e.g., diabetes) are more likely than our peers to consume and share health information. The Diabetes Online Community (DOC) doesn’t replace my professional care, but I increasingly rely on its vast network of diabetes patient-experts for general support and practical advice.
Pasta doesn’t do my blood sugar any favors, so I don’t eat a lot of it. At roughly 55g of carbohydrate per serving, I’d rather eat this:
or a generous slice of this:
But the rest of my family loves pasta, so I was happy when a friend turned me onto Dreamfields pasta. It tastes exactly like regular boxed pasta, but contains only 5g of “digestible carbohydrates.” It's a pretty amazing feeling to eat a bowl of pasta, dose for only 5-10g of carbs, do a post-meal BS check and find that I am perfectly in range.
There is one important caveat: over-cooking, re-heating, or letting Dreamfields pasta sit in cooking liquid/sauce breaks it down and raises the digestible carbs. So, on the rare occasions I make a pre-sauced pasta dish, I use “regular” pasta. To offset the ginormous carb hit, I also flip the typical pasta-to-vegetable ratio so the bowl is filled mostly with vegetables and accented with pasta.
When my endocrinologist suggested earlier this month that I go on a statin to lower my LDL (damn you, diabetes!), I didn’t love the idea. I agreed to think about it, but in truth, I began at once exploring alternatives. To begin with, I wanted to understand if my lipid numbers were in fact problematic.
Should I even worry about my cholesterol levels? According to the American Diabetes Association (ADA), people with diabetes should meet the following targets:
The role of cholesterol in our bodies seems poorly understood. For years I believed in the protective benefit of HDL - the idea that a high HDL would offset a high-ish LDL. But this 2012 New York Times article points out that view may be outdated.
(So a high HDL isn't necessarily helping me avert heart disease?) I was further encouraged by another briefly popular notion that what mattered more than the individual numbers was the ratio of HDL to total serum cholesterol. The American Heart Association (AHA) has stated that a ratio of <3.5:1 is ideal. And yet, the AHA has not incorporated the metric into their clinical practice guidelines. (So much for my own reassuring ratio of 3.55:1.)
Therefore, barring other measurements, I am resigned to the fact that the individual cholesterol numbers matter at this moment in time. Which leads to the question of treatment:
Should I lower my LDL with a statin?
Again, according to the ADA, yes. The ADA maintains that: Statin therapy should be added to lifestyle therapy, regardless of baseline lipid levels, for diabetic patients without CVD (cardiovascular disease) who are over the age of 40 years and have one or more other CVD risk factors (family history of CVD, hypertension, smoking, dyslipidemia, or albuminuria.
There’s no question that statins lower cholesterol, but for whom, to what degree, and with what effect remain unclear. Statins' success in secondary prevention – helping people (particularly men) avert a second heart attack or stroke – is well documented. But their effectiveness for primary prevention (initial heart attack/stroke) is less clear. It turns out that cholesterol levels may be less predictive of cardiovascular disease (CVD) than previously thought. (This 2012 Journal of American Medicine piece suggests the controversy).
Even if the indication were more certain, the benefits would have to outweigh the potential side effects linked to statin use (see the FDA's current consumer advisory on statins), notable among them: muscle pain, cognitive interference, and – wait for it – elevated blood sugar.
On the NIH’s National Heart, Lung and Blood Institute website, I found a simple (now outdated)risk assessment calculator* where you can plug in different cholesterol numbers and see how they affect your 10-year risk of heart attack.
(I calculated mine based on my recent lab work: 1% risk. Not very statin-worthy.) * 11/12/2013 update: new cholesterol treatment guidelines were published today. Per these new recommendations, anyone between the ages of 40 and 75 who has Type 1 or Type 2 diabetes should be on a statin (period). However, I used the brand new calculator (which now includes stroke risk) to gauge my 10-year risk of heart attack or stroke. .04%. So, thanks, I guess, for the new guidelines, but I'll still pass on the statin for now.
Despite my skepticism, I don’t want to give my newish endocrinologist the impression that I ignore her advice. There seems to be no harm in trying to lower my LDL naturally.
My plan to reduce my LDL without a statin Reputable web sites assure me that diet and exercise may help lower my LDL by 20-30%. The added bonus for me is that I’ll get more fit in the process. Excellent! So:
I upped my gym visits to 5-7 days/week.
I found my long-lost pedometer and am logging at least 7500 steps/day.
Oatmeal or soup (why not?) for breakfast.
Meat and dairy are now occasional indulgences.
On the upside, I figure I’m just leveraging diabetes to make myself healthier.
(Take that, diabetes!)
I ditched my Saturday AM gym workout in favor of a family hike with good friends who live in Boulder. I expected we would be gone all day and considered taking my back up insulin and needles, in the unlikely event I might need them. But it was hot - close to 100 degrees - and insulin needs to stay cool. We were out of ice and I hadn't prepped my FRIO and I was concerned the insulin would get too hot in the car. So opted to leave my backup insulin and needles at home (and now you know where this story is headed).
We were hiking with small children, so as it turned out, it wasn't the most vigorous exercise. But it was a stunning Colorado hike.
Afterward, we picnicked in downtown Boulder. As I was unsure what the hike had accomplished for me metabolically, I dosed conservatively, planning to check my blood sugar again in an hour and re-dose as needed.
I didn’t have the chance to re-dose. Instead, 15 minutes post-meal, my pump alarm sounded. That usually means one of three things:
Check Blood Sugar / Just ate - too soon to check.
Low Battery / Inserted fresh battery that morning.
Low Insulin Supply / Replaced the infusion set and insulin the night before.
The beeping was getting louder and more urgent. It now had my full attention.
I unclipped the pump from my clothing and consulted the screen:
Sounds fairly innocuous, right?
I tried to cancel the alert. No luck.
I tried to back out of the screen.
Again, no dice.
Suddenly, as though impersonating a Vegas slot machine, the pump began wildly scrolling through three-digit numbers – numbers so big it was downright uncomfortable to see them on an
I excused myself and called Medtronic.
Within five minutes, a customer service representative was assuring me that my pump was still under warranty so Medtronic would send me a new one, for free. How great of Medtronic and what a relief. It made the next part easier to swallow.
Medtronic: If you don’t receive your pump by Tuesday, please give us a call.
Woah. Tuesday? (This was Saturday.)
Me: I hope I don't sound unappreciative, but Tuesday is three days from now. Medtronic: Yes. Me: Do you know that the pump is what I use all the time to manage diabetes? Medtronic: Yes. You will have to move to your backup plan. Me: Okaaaay.
People with diabetes have lots of back up plans. We have plans for high-fat meals, plans for high-carbohydrate meals, for delayed meals, for exercise, illness, stress, unexpected lows, stubborn highs... But a backup plan for all-out pump failure? Nope. I didn't have that. Plus, my short-term back up plan was at home in the fridge.
So, there we were in Boulder with our friends, the kids, and the dog we were looking after. How much active insulin did I have on board? I really didn’t know.
So we went home. And I considered how to be pump-free for three days.
Option A – Multiple Daily Injections (MDI) MDI therapy generally utilizes two types of insulin – short- and long-acting insulin. The long-acting insulin stabilizes blood sugars between means, the short-acting one covers food. Insulin pumps eliminate the need for long-acting insulin because it works as a healthy pancreas does – continuously delivering micro-doses of background insulin. And that’s fantastic, but it's also the reason I don’t have a prescription anymore for long-acting insulin. So, to temporarily implement an MDI approach, I would have to call my newish endocrinologist – the one I really don’t have a relationship with yet – on a Saturday for a prescription. A vial of lantus would cost $120. I’d use it for three days and throw it away (it lasts for a month when opened). Not ideal.
Option B (Please read this disclaimer before reading on.) What if I could mimic the pump, giving myself little micro-doses of short-acting insulin throughout the day and night?
Had other PWDs considered this route? I went online found several pumpers who had apparently used this approach with some success. I decided to try it. Feeling that night time would present the greatest risk, I set my alarm for every two hours and gave myself teensy doses of insulin. The next night, I checked only every 3 hours. The night after that, I checked only once. It was tiring, but I stayed between 89-133 every night. I was glad to know I could do that in a pinch, but very, very glad when the pump arrived at my door Tuesday morning.
In the end, I am reminded how much I appreciate my insulin pump, the company that makes and supports it, and the DOC.