September 1st is Diabetes Art Day, a fabulous idea by Lee Ann Thill at The Butter Compartment. Below are photographs of my contribution, Basal Insulin, Bolus Insulin, a temporary mixed-media installation. I always knew that I would use those fifty or so insulin vials for an art project, but I needed a little nudge to translate the raw materials into a finished project. (Thanks, Lee Ann!)
I collected the vials over 26 months of “hormone replacement therapy.” The insulin they contained influences so many choices in my life, not the least of which is picking which food to eat. Low carb. Sugar-free. Sugar substitute. Simple sugar. High fiber. Original, decadent, carb-heavy. Whatever it may be, insulin supports the choice.
Basal Insulin, Bolus Insulin #1 (2010)
Basal Insulin, Bolus Insulin #2 (2010)
Basal Insulin, Bolus Insulin #3 (2010)
Basal Insulin, Bolus Insulin #4 (2010)
Basal Insulin, Bolus Insulin #5 (2010)
Basal Insulin, Bolus Insulin #6 (2010)
Basal Insulin, Bolus Insulin #7 (2010)
Basal Insulin, Bolus Insulin #8 (2010)
Basal Insulin, Bolus Insulin #9 (2010)
Basal Insulin, Bolus Insulin #10 (2010)
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In honor of the company meeting earlier this morning, here are some of the things I’ve learned and thoughts I’ve had this morning . . . bullet point style:
I can’t decide whether Arcade Fire’s new album, “Suburbs,” is completely, utterly pretentious and lacking in fun, or if that’s me I’m thinking about.
The second week of August may be the second best commuting week of the year. It has felt like the week between Christmas and New Years.
The reception areas of Newton-Wellesley Hospital (NWH) are under construction, and the architects created a display of the materials they’re using. I like that a lot.
Phlebotomists, who specialize in doing something inherently painful with a minimum amount of discomfort, aren’t paid well enough. I’ve been poked many times, and the ones who do it well really are amazing.
The NWH lab dedicated to drawing blood is extremely quick. It’s where I prefer to go. It opens at 8:30.
At 7:00 the main hospital lab claimed a 30 minute wait, but it was really an hour-long wait for 60 seconds of actual medical procedures.
Some days I’m really eager to get to work and finish up what I was working on the day before. Today was one of those days.
In early April, Sports Illustrated predicted the Chicago Cubs would finish second in the NL Central, with a record of 81-81. To make that happen, the Cubs will have to go 33-15 for the rest of the season. The Cubs also have an estimated payroll of $137M for the season, which is $100M more than the team one behind them, the Pittsburgh Pirates. (The Pirates!)
I should have brought a book with me to the lab. I just finished reading about platypuses and have started reading about Romantic science.
“Hey, Diabetes. Imma let you finish in a minute, but I just wanna say that Jeff has the most epic afterwork ride planned for tonight. So If you could just keep up, that would be the right thing to do. Peace.”
They say — whoever They are — that to recover from jet lag it takes about a day for every hour of time difference. I think that They might be right. This morning we’ve been home for ten days, and Lisa and I believe that our biological clocks might finally be in sync with the sun here in New England.
Over the weekend, we went to the Mount Washington Hotel in Bretton Woods, New Hampshire, for a company outing. It felt a bit like we were still on vacation, as if the four days at work were just a temporary stop between Australia and the White Mountains.
But, no. Today I was back at work. And I feel really productive, since I recognize that my recent vacation (to a certain extent) and the Mount Washington trip (to a much greater one) were possible because of my awesome employer.
I’m working on a longer recap post about Australia, but until then, here are a handful of things I miss about Australia:
We’re back from Australia — have been for about 30 hours. That, coincidentally, is about how long our Friday was. As always, the first night we slept soundly due to being completely wiped out by the trip home; but the second night (last night) the jet lag hit. Usually, I have a loud soundtrack going through my head the moment that I wake up too early after a trans-oceanic flight; but this morning it was a small murder of crows that woke me up, and then the soundtrack kicked in once they moved on:
As I write these lines, I’m “watching” the Tour de France prologue and waiting for my temporary basal insulin rate to kick in, since I’m going to go for a run in a few minutes. This will be my first since Alice Springs about three weeks ago. That morning was cold! So cold — 3ºC — that I could see my breath, shivered whenever I stopped to photograph birds or whatnot, and wished that I’d brought a long-sleeve running shirt. (Today we’re supposed to have big-time summer heat at home. Lisa is already out for a walk, not having slept at all overnight.) Despite the lack of running, I managed to lose weight on vacation — though I was quite surprised to see the number of the scale. We’ll see how much all of that hiking and walking has helped with my muscle tone and how much “outback lunch” has hurt.*
Time passes . . . Running went well. No jiggly-ness in places where there shouldn’t be. No gasping for breath. No sluggishness. No hypos or high blood glucose readings. Those are all good signs. I guess we did manage to keep active on our trip, probably more throughout each day than we typically would have been sitting in front of our computers at work.
All that activity wasn’t enough to reach blood-sugar nirvana right off the bat, though. In fact, it was kind of a weird diabetes trip, all things considered.
First off, I’ll get a confession out of the way. I’m pretty obsessive when it comes to traveling with diabetes. I carry almost twice as many supplies as I’m going to need, and I worry that I’m going to forget stuff.
I bring more supplies (even though they take up a ridiculous amount of space) because I almost ran out of infusion sets in Chicago in 2003 when I got a bunch that I just couldn’t get to work and had to keep changing them until on the morning of my return I was contemplating how to give small amounts of insulin by syringe for the next ten hours.
And I worry about forgetting supplies because in the past I (a) left my meter at home at the beginning of a two-week road trip and had to buy a new one in Milford, CT, (b) I left my insulin in the minibar fridge in Shimla, India and was lucky enough to have one of the hotel staff track me down on my way to the railway station, and (c) I didn’t bring a quite enough insulin with me on an unexpected trip to Kansas last year.
See, my pump broke in the middle of nowhere in the Northern Territory of Australia about three weeks ago. Yup that’s right: dead. A button on he controller got stuck, and that was enough to cause the pump to give up the ghost.
This isn’t the first time this particular error — “Button Error” — has happened to me. In fact, it happened about a year ago. In the US, this is an annoyance: Call Minimed, explain the problem, have a new pump the next day. In the interim, I’ve used my older Minimed 511 pump. (It uses all of the same supplies and is mine to keep because my health insurance system lets me get a new one every five years or so; and Minimed is eager to help me get the latest model.) It’s a pain, but it could be much worse.
But in the Outback in Australia. In a campervan. Without a fixed itinerary, without my own phone, without the Internet. It’s a bit more difficult. I had my backup plan, but it was now only one failure away from EPIC failure. My safety net needed me to do something. Fortunately, I had three things going for me:
I brought a backup pump.
I had the foresight to bring the list of Medtronic Minimed distributor phone numbers that comes in every box of supplies.
I have a naturally sunny and charming disposition. Okay, that’s a bit of a stretch, but I wait to freak out until after I’ve taken charge of the situation.
Getting a replacement pump in Australia is not the same 24-hour experience as it is in the USA. First, dial Medtronic Minimed from a pay phone. Hang up. Deposit 50 cents. Dial Medtronic Minimed. Tell them in the Northern Territory. Hang up. Dial the free call number (1800 777 808). Listen to crappy hold music. Get connected to US Minimed tech support. Explain the problem. Tell them I’m in the Northern Territory. Get put on hold. Listen to more crappy hold music. Give them the location of my next fixed address in Alice Springs in a week. Tell them to have the Australian office leave a message on my home voice mail (which we were checking via Skype when we had Internet access) if they need to.
A week later, show up in Alice Springs. Find no pump at the hotel. Get on Skype with the Aussie office of Minimed. “Your pump left Hawaii this morning. It should be there in a few days when you return to the same hotel after going to Watarrka and Uluṟu.” Go to Watarrka and Uluṟu. Pick up new pump about two weeks after it failed. Program all of the settings that I had (fortunately) written down on an index card I keep with my meter… you know, just in case. E-mail nice dude at Aussie Minimed to ask what to do with the broken pump. Put the pump in my luggage as a souvenir until I get home.
So what did we learn for the next time?
Assume that a pump is going to fail at some point. Over the last decade, I’ve had at least two fail with the “Button Error” locking failure and one fail with a motor sensor problem.**
Carrying a backup pump is a necessity (if you have one).
When leaving the country, bring along Lantus or some other kind of long-acting insulin as the backup plan for the backup plan.
Carry manufacturer contact info.
Wait until you get to the US (or home) before contacting Minimed about getting a replacement pump. I suspect supplies would be easier to get if they got lost, etc.
Other than that, diabetes didn’t really affect my trip any more than normal. Hiking and swimming are things we do frequently, and I managed the trip to the Great Barrier Reef pretty well. I probably could have used a little more insulin before disconnecting pump before I put on my wetsuit; that’s good to know for next time, but this was the first time, and I feel it was a good trade-off.
Not exercising and changing my diet and eating schedule exposed a few problems with my basals . . . or at least required some changes. After those changes, I did pretty well for the rest of the trip. Sitting on a plane for long periods of time is going to suck for so many reasons, so just increase every bolus insulin dose 10% and hope for the best.
Now it’s late, and I’m hoping for a bit more sleep tonight. Wish me luck!
** — I suspect, but cannot prove, that this is related to water getting into microscopic fractures in the pump casing. I try to keep the pump dry, but I’ve noticed it twice after steamy summer exercise sessions. So I’m trying harder to keep the new one in a less humid environment, putting it in a plastic zippy bag when I run or ride and keeping it out of the steamy bathroom when I shower. We’ll see. Let’s hope the FDA takes notice.
I’m going to try something new, posting a small group of diverse links on a (more-or-less) weekly schedule. Hopefully this will help with my hoarding problem.
Living with Diabetes: Sarah has a really great piece on her site about growing up with the “bad kind” of diabetes. At least that’s how people differentiated type 1 and 2 while she was growing up. But really, all diabetes sucks, especially if you try to ignore it.
Software Development: Keith Swenson’s article 26 Hints for Successful Agile Development is full of good advice about how to do software development effectively — even if you’re not really doing Agile development. (via Infoq)
Risk and Oil Spills: You would think that a company like BP, whose contractors deal with potentially deadly situations on a daily basis, would have a better handle on risk. Even if BP engaged in neutral cost-benefit analysis, as this NY Times article suggests, it should have chosen the option that lowered its risk exposure. Remember: risk is cost of vulnerability times likelihood of vulnerability. In the case of deep water drilling in the Gulf of Mexico, we’re seeing that the cost of an oil spill is astronomical. The probability of failure would have to be completely zero to make it worth choosing a less expensive option.
Time Machines: Stephen Hawking tells you how to build one using wormholes. He also advises against creating paradoxes where you kill yourself.
The Artificial Pancreas: So what’s this “artificial pancreas” that people with type 1 diabetes keep talking about? Let Wired magazine or Aaron Kowalski tell you. It’s not a cure, but (if done correctly) it will hopefully lower a lot of the variability that we see in our blood glucose levels. Basically, it’s an expert system built into a pump plus continuous glucose monitoring combo. It’s also a bundle of assumptions and heuristics. I find it somewhere between amazing and hella scary.
Just FYI, I went for a ride this afternoon. Nothing special — just my typical 16-mile, hour-long route up and down the hills of Milford and Upton. My bike seems to be fine and not sluggish at all, strongly suggesting that my problems on Saturday were, in fact related to nutrition and conditioning and just not having a good day.
I think part of my problem might be that I’m bored with my training route. I’m very, very accustomed to it. Perhaps it’s time to make a few changes.
Oh, and I feel very close to having my insulin and food worked out for an afternoon ride with happy BG readings beforehand and afterward. :^)
Diabetes Blog Week finished Sunday. I really enjoyed being part of this, writing my own posts and (especially) reading other people’s contributions. I’m giving a huge “Thanks!” to Karen for coming up with the idea for this village green experience and for providing the essential scaffolding that the rest of us were able to use. It really made participating easier.
It’s wonderful to have a place — virtual though it may be — where people understand what I’m talking about on a deep level.* Because so many of us were conversing on the same subject on a daily basis, I found it much less isolating than the usual “I’m going to talk about diabetes now” experience. And I especially enjoyed the honesty that was possible when we were writing for each other; I didn’t feel like I had to have all my shit together before talking about my disease. (It often feels easier to talk to people with working pancreases, if I just pretend that I do — whether or not that’s the case.)
In fact, I think I finally get the real value in the diabetes online community (DOC). In the past I’ve tend to visit the DOC to get information that I felt could help me manage my illness better. But having read so many posts over the last week, I find myself thinking about it as a place that’s primarily about sharing other people’s experiences, talking about my own, and just being present. Certainly, I’m going to keep trying to learn as much as I can from the same sources as before, but being able to get extra perspectives has a ton of value in itself.
I wonder if you feel the same way, too. And I hope that if you’ve been reading me for the first time over the last week, you’ll stick around. Big things are going to happen in the coming weeks that you might want to read about — for example, we’re going to Australia for a month — and I’ve been enjoying all of your comments.
Now here’s the scary part (for me, at least). I want all y’all from the DOC to stick around, but I’m not primarily a “diabetes blogger.” I have a lot of stuff on my mind: diabetes, the US healthcare system, travel, photography, New England cemeteries, and a bunch of stuff that’s more like work than fun. (That last chunk of stuff actually comprises the majority of the traffic to my site, if not the majority of what I write about. . . . Go figure.) And I use this space to post on all of those things. Unless you’re actually me, some of my regular topics aren’t going to be your cup of tea.
So let’s make a deal. If you stick around and ignore the non-diabetes posts that don’t interest you, I promise to give you something worth reading more often than not. Just add me to your RSS feed reader or stop by regularly. Deal? Good.
. . . And now it’s time to put this new relationship to the test. I’ve been sitting on the next two posts (people’s exhibits a and b) for the last week so that they wouldn’t get in the way of your Diabetes Blog Week reading. It was enjoyable, but my! wasn’t there a lot of reading?! And I just didn’t want to add to that.
See y’all again soon!
* — I’m reminded of the time that I accidentally happened upon a little people’s convention in the late 80s in Des Moines, Iowa. Lots of people who are usually “the other” were running around doing their own thing in a supportive community. I felt like the odd one out. In the DOC, we’re on the inside.
Here it is, the last day of Diabetes Blog Week. Thank you so much, Karen, for proposing this online extravaganza. Today’s topic is a fitting valediction: Life after a cure.
I’ll just get this out of the way up front: I’m of two minds on a cure.
I very much want a cure for diabetes. It’s a complete pain in the ass. It affects millions of people worldwide. Even in the most developed nations, it’s a costly illness that shortens life expectancy and makes so many things more difficult. But it’s a disease that knows no borders; and despite being reported in the press as “a disease of prosperity,” it affects the rich and the poor alike. Throughout Diabetes Blog Week, I’ve read a lot posts by parents of children with diabetes; even more for them than for myself, I want a cure.
And yet, I know that patients who accept the facts of their chronic illnesses tend to have better health outcomes than those who cling to hope for a cure. The absence of a cure is the way things are, and the best that I can do for myself and those who care about (and for) me is to do my best everyday with no expectation of ever being free of diabetes. It’s a harsh, pessimistic mindset that I can’t completely buy into, but on a certain level it’s the way I have to think. Yet, I’m new enough to this disease — only eleven years — to occasionally become deliriously hopeful when I hear about some promising-sounding results from JDRF, Joslin, and other research groups.
We are all given a tiny little pill to swallow and *poof* our pancreases are back in working order. No side effects. No more insulin resistance. No more diabetes. Tell us what your life is now like. Or take us through your first day celebrating life without the Big D. Blog about how you imagine you would feel if you no longer were a Person With Diabetes.
I hope that being free of diabetes wouldn’t change me in fundamental ways. I think I have sufficiently internalized the lesson over the last year that eating a reasonable amount and exercising regularly are good parts of our family’s lifestyle. I hope that I would still keep in touch with all of the people I’ve met in the diabetes online community. And I don’t feel like there’s anything now that I can’t do.
But I do think things will be much easier. I will be able do things (like going for a ride or a run. . . or to the dentist) without worrying about how much insulin is floating around and whether my blood sugar is high or going low. It will also be nice to be free of concern over complications — supposing that I haven’t already done the damage. And I’d love to banish those ever-present concerns about whether I guessed the right amount of bolus, whether my basals are right, whether I’m going to go low overnight, etc. After eleven years, I wonder if it will even be possible to get rid of those feelings; perhaps they’re an indelible part of my personality now.
Whatever happens, I can promise you this: I will continue to do everything I can to make sure that everybody worldwide has access to that magic pill.
Yesterday was day #6 of Diabetes Blog Week. I managed to miss it because we were kinda busy. So I’m gonna make up for it today with two posts. First, some diabetes snapshots.
Before the pictures, a little story. Remember that on Friday I wrote that I was going to do 90 mile ride in the Taconic Range today? Turns out, I forgot about an evening obligation, so I decided to delay the ride until next weekend and do a similarly sized ride starting at home but without any mountains.
About two hours into my ride through Massachusetts, Rhode Island and Connecticut — before I really even had a chance to get bored — I got a flat. After a year of riding, I was due, but it could have happened in a more convenient place, instead of halfway across the West Thompson Dam. My first thought was a hope that I could just raise my hand like they do in professional races and summon the neutral service vehicle for a quick wheel change. Oh, delusions!
After walking myself back to a place with a shoulder, I made a rookie mistake, breaking the head off the valve of my flat tube as I took it off the wheel. Had I been wiser, I would have also brought an extra tube with me. Like I said: rookie mistakes. Nothing to do after that but pack it in and call Lisa to pick me up. She’s a sweetheart, that girl.
Next week, I’ll be more sensible when I finally do that ride in the mountains.
Is that exercise? I guess that depends on whether you think it’s “exercise” to do the thing that you love.
On one level, the answer is undeniable: Yes. I have to carve out time from my daily schedule to do it. Sometimes I have to convince myself to get going, especially when I’ve had a tough day and I want to veg out. And it burns a lot of calories, which was part of my initial motivation. According to the computerized bean-counters at MapMyRide.com, I’ve burned more than 130,000 Calories over the last 10 months by running, bicycling, and swimming,** which helps explain why I lost about 25 pounds over the same period.
I don’t think about it as exercise, though. In fact, what I do after work feels more like training. I “train” on weekdays so that I can ride longer distances with more ease on the weekends. I wear myself out repeatedly riding up long hills so that I can feel badass when it comes time to ride up an actual mountain. I go out in the winter and in the rain to put the miles in the bank, so that they’re there when I need to draw on them in the fourth or fifth hour of a ride. While I’m out training I have mental image of my idealized self. “I’m climbing like Andy Schleck. I’m grinding away on the flats like Fabian Cancellara. I’m spinning easily like all those other people in the peloton, waiting for the breakaway to wear itself out.”***
Whatever I call it, cycling is something that I love and that I think about way too much while I’m at work. I live for the long ride on the weekend. This Sunday, I hope to do the 90-mile ride that I was going to do last weekend before the jet stream shifted and changed my plans: Up and over Mt. Greylock in western Mass. before heading into the Taconic Range that divides New York from New England.
As with all things diabetes, it’s not as easy as just putting in the miles and showing up. There’s day-to-day planning that has to happen, too. I find it easiest to ride in the morning before the day’s first bolus: Just lower the basal about 50% an hour or two before starting and eat frequently along the way, testing every hour or so. I put Clif bars, bananas and string cheese in my jersey pockets and fill up my bottles with Gatorade. And on the weekends that’s what I do.
But weekdays I ride after work, so it’s more challenging. I hate seeing the high numbers, but I build up a bit of a blood sugar cushion by snacking without bolusing along with lowering my basal. And I drink Gatorade throughout my hour-long workout. I’ll keep tweaking everything until I get it right — until my BG levels don’t drop 50-100 mg/dL in an hour — and then I’ll lock it in until diabetes decides to change how my rules work (again).
Thanks to diabetes, I always carry three things with me when I ride****. (1) A tube of glucose tablets, which I occasionally need to use. (2) My phone, which I fortunately have not had to use except to snap the occasional picture. And (3) about $15 dollars in small bills in case I need to stop for an emergency snack or to bribe someone.
But to paraphrase Lance Armstrong, it’s not about the diabetes. I love to ride, and diabetes can come along if it promises to keep up. When I actually get on the bike to ride, that’s the time when I feel like I’m beyond diabetes. I put my pump in the pocket of my Team Type 1 jersey to represent for my PWDs and because I’m so damn proud and inspired by what that professional team does; but cycling connects me to a time before I had diabetes, and it’s my way of being as free from it as possible.
* — I’ve also been known to run, walk, hike, and backpack. And, yes, I’ve even started to enjoy swimming — though, I still suck at it.
** — Seriously, I’m not thinking about competing in a triathlon. I’m not.
It’s day #4 of Diabetes Blog Week. I have really enjoyed reading so many of the posts. I think I have a greater appreciation for what parents of PWD go through. (Here’s to you, the hard-working and perpetually worrying D-Moms and D-Dads!) And I feel more connected to the community than ever before. Thanks for proposing this, Karen!
Today’s topic is food, specifically “To Carb or Not To Carb?” What we eat and what we avoid. High carb or low carb diets. It’s all on the table — so to speak — today.
Fellow people with diabetes and other readers, I have a confession. I’m not really that into food or eating.
There. I said it.
Don’t get me wrong. I really enjoy eating tasty things, especially when they’re prepared with great care and passion. Some of my favorite things in the world are JP Licks ice cream, truffles from Moonstruck Chocolates, cannoli from Mikes in Boston’s North End, really great cheesecakes, and fresh berries. There’s no more enjoyable way to start the day than with a chocolate croissant, pain au chocolat, or crêpe; and it’s probably good that I’ve given myself a (small) weekly quota. I can still taste the fantastic (and very expensive) steak that I had at Morton’s Steakhouse in San Diego almost ten years ago; and the memory of the stilton on the cheeseburger from Gourmet Burger Kitchen in London still makes me smile. As do the rogan josh from the Lake Palace in Udaipur, the dosa I had in Shimla, and the gulab jamon in Madras. Just about every time that I’m out riding my bike during somebody else’s mealtime, I smell a grill and desire a bratwurst with sauerkraut and all the fixings. About once a month I want to take a trip to Salt Lake City to have the best reuben sandwich I’ve ever tasted; and just as often I want to find that hole-in-the-wall bar-b-que shack in the woods outside Kansas City that the energy traders took me to a few months before I was diagnosed. I’m surprised I haven’t made a road trip with Lisa to Montréal just to go to Le Keg. I like good pizzas and well-made omelets and blueberry waffles. I have a thing for fully stuffed, unhealthy burritos from Qdoba or Chipotle and palak paneer from just about anywhere. And dammit, I’m not even hungry now, but I want a fish taco from Rubio’s.
Having owned up to all that, I can still say that I’m not a foodie. (Though I wouldn’t mind being one.) My approach toward food is (sadly) opportunistic. If the chance to eat great food is present, I will take up the challenge (and probably pick up the check for friends, too). But for the most part, I’m just kinda indifferent. I’m adverse enough to risk that I don’t go out of my way to find great restaurants near where I live. Furthermore, I lack the experience or the passion to be a decent cook/chef/saucier/whatever. Having worked in a deli, I know which meats and cheeses go well together — and cheese is about the best elemental food in existence — but I can’t get the herbs and spices right when I try to put them together in the kitchen. And I’ve been called “methodical and slow” while cooking, so my creations (few as they are) often taste a bit . . . well . . . clinical uninspired.
It’s perhaps a bit ironic that I should be afflicted with something that’s so often thought of as a disease about food. “Cheating?” Not really my thing. It once took me two hours to eat a bag of Reese’s Pieces from the vending machine. Like every American worth his or her extra large portion of salt, I’ve been known to overeat. And it was really quite difficult to cope with the severe “no more than 60g of carbs at any meal” dictum that my former endocrinologist threw down when he started me on NPH in 1999. I ate a lot of sugar-free Jello to keep my stomach from eating the remaining nearby organs that I might need.
Getting on the pump in 2001 was so liberating. I could stop thinking so much about food. Or rather I could think about eating when I wanted to eat and skip snacks when I didn’t want them. Delivered pizza was suddenly back on the menu as a “sometimes food.” So was ice cream, along with those other things that occasionally make eating a transcendent experience. And there’s really no such thing as “cheating” any more, since I can always just bolus tiny amounts for the random snacks that come my way — perhaps because someone put Dunkin Donuts’ munchkins by the printer. Or jelly beans. Or Halloween candy. Or Easter candy. (BTW, this junk food magnet printer is right outside my office. “Oh look, it’s a snack that I don’t really want. Oh, the joy.”)
High carb? Low carb? No carb? I’m really more of a calorie person, myself. I try to keep my meals a reasonable size, and then I count the carbs that are there and bolus insulin accordingly. But the more that I exercise the more that I think about carb timing. Lately, I’ve been trying to eat the right number and kind of carbs in the middle of the day so that I can have a minimal amount of bolused insulin floating around when I head out to ride the bike or go for a run.
And strangely, I’ve been resisting the challenges that this presents, since it feels a bit like the old, austere NPH days. And yet, I want the good things that come with thinking more about food.
It’s day #3 of Diabetes Blog Week. I still have Ludacris’s “How Low Can You Go?” running through my mind after yesterday’s post about hypoglycemia. Lisa, my lovely wife, has been faithfully reading this week’s dispatches and volunteered to write today’s post about my biggest supporter, someone she knows very well: her.
To paraphrase the Ohio Players, “your diabetes is like a rollercoaster, baby.”
Back in 2003, Jeff and I went to Cedar Point in Sandusky, Ohio. Cedar Point is an amusement park with a bunch of amazing rollercoasters. I love rollercoasters. But at the beginning of the ride, there is the fear . . . that you’re going to get whipped around and turned upside down and have absolutely no control over anything. Oh sure, they tell you that you’ll end the ride safely but at the beginning you’re just sure you’re going to fly off the rails into Lake Erie. This is not an original thought but it is true that living with someone with a chronic disease can be like that emotionally. The most extreme example was the day Jeff was diagnosed, during which I experienced:
Absurdity — as the wide-eyed nurse practitioner told me that, though she couldn’t actually confirm it because the doctor’s testing equipment was broken, she was sure Jeff had diabetes and that was very, very bad. Very bad.
Protective concern — as the nurses in the ER (where we were sent for an official blood test) couldn’t find a vein into which to insert the IV because he was so dehydrated.
Exasperation — at the third round of the exact same battery of questions (we were at a teaching hospital). Yes, he was cranky. Yes, he lost 40 pounds in about 6 weeks. No, he wasn’t hungry. Yes, I’m sure he wasn’t hungry. No, I didn’t know that lack of appetite was odd for people with untreated type I diabetes. No, he didn’t smell “fruity.” Yes, I’m sure I would have noticed if my husband smelled like Fruit Loops.
Back to absurdity — as the attending ER physician became obsessed with the different pressures in my husband’s two eyes. Seriously, I don’t need to feel my husband’s eyeballs, thank you!
Relief — that my husband, hooked up to the insulin-rich IV, was feeling better.
General Confusion — a blood sugar of 304 after more than 18 hours without food can’t possibly be good. How did I not notice that we’ve been in the ER for almost five hours? I guess I missed my afternoon class. Damn, I’m hungry. I’m not leaving to eat because the instant I do, they’re going to admit him and take him to a room somewhere and I’ll never find him.
And then, alone by myself at home that night — the stress and fear. In one of my less-than-shining moments of wifehood, I made him call his mom to tell her the news because I didn’t have the courage to do it myself. I did tell my own parents and spoke to several good friends that night . . . strangely obsessed with the implications of his diagnosis on the unopened box of Hostess Cupcakes in our cupboard.
There was nothing fun about the emotional ride we went on that day. And for a while, it seemed actually to get harder. I hated learning how to give him insulin injections (it honestly doesn’t help that the needle is tiny and he says it doesn’t hurt. That, though, was better than seeing the much larger needle for the glucagon shot in case he got dropped off the back of the magic bus). There was the interminable slowness of the first few post-diagnosis trips to the grocery store where we had to learn how to shop all over again and read every . . . damn . . . label. There was the feeling of restriction because his insulin regimen meant eating at specific times and knowing exactly what was in the food, which in turn meant having to (perish the thought) cook. And the sadness of knowing that this was probably never going to go away.
But then it gets better, almost before you realize it. We share victories both big (the freedom resulting from switching to an insulin pump) and small (having days with well-controlled blood glucose). We continue to benefit from the overall better health resulting from the lifestyle changes forced upon us. We are able to constantly wonder at medical and scientific advances and hope that, someday, they might find a away to cure this disease. And, we find the humor — in the goofy things Jeff says when his blood sugar is low, in the Life Savers that get very clean (and liquefied . . . thank goodness they’re individually wrapped) in the wash because they weren’t removed from Jeff’s pockets, and in remembering that wide-eyed, oh-so-misguided nurse practitioner with the horrible beside manner who probably violated several privacy laws when she gave me the very, very bad news.
Chronic disease doesn’t just impact the person who has it. It can be hard on the spouse or significant other or child because they’re never going to really get what’s happening and they can’t fix the problem. But, if you’re lucky you remember that neither of you is alone. You’re in it together, and whether you end safely or fly off the rails, nothing is as scary if you have someone to share the ride and hold hands along the way.
First off, I want to assert that food tastes better when I’m driving the magic bus. Maybe it’s because there’s no less guilt about eating tasty things. Maybe it’s because part of my brain is actually turned off. . . literally. It’s kind of like hearing a favorite song as you drift off to sleep, the equivalent of eating something tasty for the first time. It’s a “new” food experience, and it’s wonderful. And there’s a raw, physical craving for food that I rarely ever experience, too.
But, I hate hypoglycemia. Along with enhancing the flavor of food, it brings other less welcome sensations, such as my brain and eyes trying to trade places and the fear of passing out. So I primarily eat to make the feeling go away.
Add to that the (perhaps incorrect and not altogether bad) feeling that diabetes usually prevents me from eating as much as I want. Back in the bad, pre-pump days of my NPH regimen, it was actually the only excuse to eat more than an exact amount on a rigidly defined schedule.
Combine all of these and it’s not hard to believe that I tend to over-treat my lows. I’m not as bad as I used to be, but it’s still hard to have the hypo feeling and say, “That’s enough. Stop eating tasty, mostly guilt-free food. Diabetes, you win again.” No, I can say that I used to use my lows to stick it to diabetes.
Switching to glucose tablets (and having better influence over my blood sugar) has helped curb the practice. Tabs aren’t that bad — and they’re much easier to eat while exercising, which is why I switched — but they aren’t exciting either. Eating one for the 40th time is no different than eating one for the first time. A bit chalky, a bit melt-awkwardly-in-your-mouth, a bit artificially flavored. Yummy, huh.
Do I miss the days when, sitting up wide awake in the middle of the night, shivering in the middle of the summer because of the cold sweat, I would go down to the kitchen and pour myself some juice and then rummage through the kitchen eating until I got my good sense back? No, not at all.
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