Sunday, May 23, 2010

Cinderella: the day after

I guess I've been trying to pretend I'm living that dream of my previous post, the last one from Diabetes Blog Week - you know, the one where I'm no longer diabetic (along with the rest of the dreamin' world). A girl can dream. Just like in those Cinderella movies I'm trying to avoid letting my daughter watch. After all that time scrubbing floors, do you think she could just stop and let someone else do them while she and her prince make doe eyes at each other? I bet she'd feel pretty uncomfortable. Not that she'd be dying to scrub the palace, but she might not want to just sit around all day.

Yes, I'd feel something like that if ever the cure arrived. Don't get me wrong, though, I'd take it in a heartbeat. But I'd have all that mental energy my brain now puts toward being a pancreas, and I'd have to use it some other way. Believe me, that's a lot of energy - I'd probably be rewriting the Constitution, or perhaps Gray's Anatomy, given my line of work.

Meanwhile, I plod along. On Friday, my mental energy was, in fact, nearly gone. I pulled into the driveway and checked for my meter (that blood-sucking -- uh, checking - device), to find it was missing. I immediately called a colleague I knew would still be at the office.

"I have a strange request," I told her. "Can you check the wastebasket in my office? I think my meter is in there. Yeah, the little black bag made of fanny-pack material. No, it's probably not on my desk."

Sure enough, it was in the trash. I knew this because I'd put it there the day before, too. She laughed. "Maybe you're trying to tell yourself something," she said. Yeah - trying to take that vacation from diabetes that never happens, right? More likely, though, I was just in my usual rush to test and, instead of throwing the used test strip in the trash and the meter in my purse right nearby, I got it mixed up. Maybe the test strip is sitting in the middle of my desk right now.

Oddly, I didn't have many such moments even when H was first born, despite the severe sleep deprivation (and my usual need for lots and lots of sleep). No shoes in the fridge and chicken in the high chair. (I tried to find that Far Side cartoon on the web - the one where the man is on the phone saying something like, 'I have it all in hand - the kid's in the high chair and the chicken's in the oven.' But apparently Gary Larson keeps his images carefully offline. His ideas have had enough exposure - you think?) The closest I came was almost putting the milk in the dishwasher - but I stopped myself before actually hitting the "run" button.

I don't even get mixed up that way when I run low. My BG can be 35, and I'll be thinking, "huh, that's funny. Guess I'll go get something to eat." In fact, I've never passed out from a low - and I've run as low as about 20. No one's ever noticed I've been low unless I told them. (Or maybe I'm goofy so often, they can't tell the difference. Hmmm...) It's part of this weird aura that makes people think I'm taking great care of myself. But really, I'm just lucky (as far as the lows and passing out goes), and I know this. I can keep going even when there's no rational explanation for it. So mental slips like the meter in the trash tell me I'm really, truly tired and overdoing things. It only took me both weekend days to get the full 8 hours in one night that I knew I needed - but I finally got it, so now I'm ready to go again for one more week. Or maybe I'll try for one more day, at least.

Sunday, May 16, 2010

Dream a (fabulous) little dream - life after a cure

Here's the call put out by Karen: To wrap up Diabetes Blog Week, let’s pretend a cure has been found. 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'm glad the idea isn't to imagine what my life would be like now if I hadn't ever had diabetes. Of course, I've thought about that, too. But who knows what I would have done differently - if anything. By the principle of the butterfly effect, my life might be completely different (and maybe the whole world!).

Rather than follow Aston Kutcher's footsteps, we get to imagine that - poof - diabetes suddenly doesn't exist. Would I go get my commercial pilot's licence? Become a deep-sea diver? Buy my own ice cream shop and work my way through the stock myself?

Actually, I had a bitter-sweet taste of this sort of euphoria when I went on the pump - I was told I could eat basically anything I wanted, as long as I bolused for it properly. Well, that was sort of true - at least before pregnancy. I did find there was a limit to what the pump could handle. (Side note: The so-called "artificial pancreas," as one poorly-informed journalist called it, is so far from the cure that most nondiabetics think it is, I just want to scream. But that's another post topic!)

So no, Virginia, there's no cure yet. And, being a realist and medical writer, I know that any cure, even a "real" one, will likely come with some residual limitations - like having to take antirejection drugs (Although less toxic forms are out now, and maybe even less toxic ones will come along). But if there were a true cure, and once I got over the complete shock and utter joy, disbelief, and relief - mostly relief at not having to worry about it anymore, both in the short term and the long term - I would probably still do most of what I do now, just without all the extra frustration, time, and expense. I sure could use that extra time and money. I've estimated that we could take a lavish tropical vacation every year on what I now spend on my diabetes - and I know I have the best possible insurance coverage (in our current health care system). Well, these days it would probably be a trip to Disney World.

I would, however, consider working less at my day job and trying to write a book. That's my real dream, but right now I can't imagine risking losing my insurance. Hubby's insurance has always been decent but less than what I have, and less certain of staying the same. I'm not a huge risk taker by nature, but I like to think a big part of that is because of the diabetes, and insurance system. I spent some time in Australia during college, and besides going bungee jumping and hang gliding, and travelling all over Southeast Asia and the Pacific, I had - gasp - all my diabetes supplies covered, with almost no expense, because of the Australian health care system. I've always kept it in the back of my mind that I could go back there if things got really bad here. But it's a long way away, and family is a tie that I'd hate to break, especially with a small kid.

I've got to say, I haven't let diabetes keep me from doing most of the things I wanted to do in life, up to this point (except for writing books). Any maybe because of that, a lot of people I know don't realize what a huge impact it still has on my life. I'd be a different person - more relaxed, able to take some more chances, and more hopeful about my future and my family's future. This would actually be the best point in my life for the big D to Disappear, because I'm the most stretched I've ever been, as a working mom. They say adversity gives you character - but I've got plenty of that now, thank you!

Thanks to Karen again for this opportunity. I'm still making my way through all the DBW posts, and will be for some time. I'm learning so much from you all - both little ideas of different things to try in my daily routine, and also some completely different perspectives that are well worth thinking about.

Saturday, May 15, 2010

My diabetes snapshots

I've actually never posted pictures, apart from my homepage shot - in part, because I don't want pictures of my kid's face on the web. She gets to choose what she wants the world to see later, when she's a viable decision-maker (or at least until she figures out how to do it herself). Also, I'm still pretty new to this blog thing. But photos are the theme of the day for Diabetes Blog Week.

I chose the thing that goes with me virtually everywhere. No, not my pump; that goes with me absolutely everywhere, except the shower. It's my purse, a.k.a. the Sedan Bag (I'm dating myself; I should call it my SUV bag - or perhaps my stretch Hummer!). It holds everything I might need in a pinch - which, having both diabetes and a kid, is a lot of stuff.

(Hey, that was easy!) Here's the list of what's pictured, counterclockwise from left (because I'm a lefty):
Wallet
Bllue insulated bag with insulin pump supplies, insulin, etc. (it's one of those juice-cooler bags)
nasal decongestant (for the monthly cold I get, having a kid in daycare)
glucagon
two tubes of glucose tabs
meter
paper address book (b/c a while back I lost both my contacts and my computer at once!)
three pairs of glasses (sun, reading, distance - I'm not old enough for this! I think it is because of the diabetes)H's hair bands
toy sheep (because you never know when you might need one)
cell charger
keys
kid's book (Time for Bed; most kids' books are about getting the little blighters - er, cuties - to sleep)hand sanitizer
lotion
chapstick
lip gloss (I have to feel feminine some of the time!)
checkbook (oh, yes, there's a lot to pay for!)

I left out a bunch of bills waiting to be paid. (I love online banking, but not everyone is on board with that yet.) I also left out the phone I used to take the picture - probably the heaviest single item!

The last time I had a massage (one of my few spurges), the masseuse said my back is lopsided - higher on one side than the other. Gee, I wonder why? But I can't find a way to lighten my load. I actually get a little panicy when I'm without all this stuff for a while. Even before having a kid, I was this way - ever since getting diabetes at age 13.

How do you carry your supplies? Purse? Man bag? Car? Desk (not on your back)? Not at all? I hope someone's got a better handle on this than I do!

Okay, I can't resist - still not her face, and not the best shot, but you can see my little ballerina is just thinking about her next fancy move! She's the reason I keep trying.


Friday, May 14, 2010

Let's get moving - or, when do I get to stop?

Here's to Karen for getting us all moving in the blog world, at least. My second day of Diabetes Blog Week (most people's fifth), and the topic: Exercise:

Let's get moving. Exercise . . . love it or hate it? Do you have a regular exercise routine? Or do you have trouble finding your exercise motivation? How do you manage your insulin and food to avoid bottoming out during your workout? Today is the day to tell us all about your exercise habits, or lack thereof.

Where do I start? I've blogged on this topic before (exercise schmeksercise - I was in a perverse mood). Please take a look, because I basically said it all there, so I don't want to be a bore. But, brief recap: I don't do gyms. I used to, but I never really liked the repetitive, sweat-it-out thing. Then I got migraines and couldn't do a lot of strenuous exercise. In fact, if I was in the migraine "zone" (typically, there are periods where you're more prone to them, if you're a person who gets them), exercise would trigger one, and it would also make my BG shoot up - even when it was fine to begin with. (You know, probably, that if you exercise when your BG is somewhere around 250 or higher, that can just make it go even higher - a stress response. But with migraines, my BG would shoot up with exercise even if it started out around 150. Not a plan.).

So I downshifted from running and aerobics to walking and hiking. I've found this is actually all I need for BG control, and if I do it often enough, it's better than the occasional, big spurt anyway. I do miss running sometimes. I used to use exercise for stress relief. But these days, I do so much running after my toddler, I miss the couch even more. What more motivation do you need to do a short sprint, than hearing that little voice from the other room, "I'm up here!" and knowing it means she's half way up the stairs - on the outside of them, dangling over the lamp?

The exercise I do now for stress relief: Yoga. I do video tapes, after H goes to bed. That's in winter. In good weather, we often pop the stroller out and go for a winding walk to the playground (as winding as we can make it before H nearly throws herself out of the stroller in the direction of the playground). Sometimes we're defeated by Elmo. But we're working out the various sneaky techniques that all parents devise - out of desperation - to get their kids to do anything. Bribe? Sure. Reverse psychology? Yup. When all else fails, sometimes I just let Hubby take over and I go for a walk myself (and sometimes he does the same).

Even though I don't get migraines anymore (if you want to know the "cure," it'll cost you! Kidding - I'd share it with anyone who's interested) - I still follow the more mellow exercise routine. I don't have time for more, and it seems to be working. My HDL cholesterol is even really high! Please don't be jealous - you know all the rest of what I deal with. But I like to have some health thing I can be proud of.

Oh, and what do I do to avoid bottoming out? Lots of things. Sometimes I use a temporary lower basal on my pump, sometimes I eat something beforehand, during, or after. I also keep in mind that, if I really exert myself, it can affect my BG many hours later - typically in the middle of the night. So I eat a decent snack before bed (ice cream, anyone? ;)). Still, sometimes I do go low anyway, of course. But when I treat those lows, it's less likely to rebound than the run-of-the-mill low. (Oh, and I missed the day on how I treat lows. I love chocolate, but I tend not to eat it for a low - it takes too long. The ole glucose tabs work best, but juice is sometimes more palatable. Pregnancy made me boring on this score. I get my kicks watching my kid now.)

So now I'm curious about what y'all else do for exercise. I'll take a little stroll through the blogs...

Thursday, May 13, 2010

Carbaholic

So I'm joining in this Diabetes Blog Week thing - almost at the end of the week. Karen, I promise to check out your site regularly, after this!

So, my take on carbs: I love 'em. Always have. I loved chocolate as a kid. When I was in the hospital, just diagnosed, at age 13, some jerk visiting my roommate said (when he found out what I was "in for"), that I must have caused my diabetes because I ate too much candy. I totally believed him, for about an hour.

Anyway, as a teen, I followed the guidance of the time and avoided "sweets" - but way overdid it on "regular" carbs. Bread and cereal were (and are) my comfort food. I figured out, before being told, that that was a bad idea. But it took a long time for me to change, in part because no one told me I had to. (An A1c of 8 was "good"!)

It took something drastic for me to change, in fact. I started getting migraines late in college, and figured out that wheat was one of my triggers. Boy, did I have the DTs weaning myself off wheat! But after a month, I started to adjust.

Long story short, bread is now a smaller part of my diet - but it's still there, in the form of wheat-free breads and pastas, and granola (my favorite!). Another long story short, during pregnancy my big craving was Greek yogurt - which is really high in protein, and low carb. At the time, you couldn't get it in the grocery store, so I got it from our local Greek restaurant. Somehow, that habit has stuck. I eat it most days for breakfast - sometimes with honey, if I think I can get away with it; sometimes with Splenda, and always with a little wheat-free granola. This really helps even things out. And now I've got my mornings figured out (usually), the rest of the day goes better, and I have more leeway.

I'm not at all on the low-carb bandwagon, though. Running around after a two-year-old, I need that quick boost all the time. I've just figured out (more or less) how to accommodate the carbs - usually by including protein with it, and just not eating too much at once. Yes, somehow I've actually managed portion control! Don't ask me how - maybe it was the period when I couldn't eat anything at all, and then slowly added back one food at a time. Also, I just don't crave those wheat alternatives the same way. I swear they put something extra in wheat to make us crave it!

One carb that I'm really careful with - beside real sweets - is fruit. I usually don't do it in the morning, when I tend to have insulin resistance (I heard coffee contributes to insulin resistance, but I'm never giving that up!). Later in the day, though, fruit is my friend.

And at night, I confess to an ice cream craving. I usually (okay, often?) eat a low-fat, low-carb ice cream - a compromise between regular ice cream and sugar-free. I can handle that with my pump, easy. When I do eat regular ice cream, I've worked hard to get my dual-wave bolus right on my pump. Depending on how much fat is in the ice cream (some have so much it'd scare the pants off people who don't know a glucose from a sucrose), I spread out the square wave over one to three hours. And the initial bolus depends on how much carb. It's a dance with the devil, but it actually keeps me motivated to keep trying! Better than a carrot, right?

A mother's day of mothering

It's been a classic sick-kid week. H got sick out of the blue last Friday. Mid-morning, she spiked a fever and was clingy and cranky all day, not eating much (odd for her). The next morning she was outright sick, throwing up. I put her on the BRAT diet (no, it doesn't refer to the kid, though it may seem like it for the way sick kids act). Bananas, Rice, Apple Sauce, Toast. All we got for it was a lot of apple sauce on the carpet.

Sunday - Mother's Day - she seemed better and was hungry, so she had cereal with milk. All seemed well for hours, so we went for a late lunch out after her nap. That was a true parent moment: We arrived at the nice restaurant, everyone was pleasant, then H threw up right in the main hallway. We ended up going home, and hubby went back to the restaurant to pick up our food to go. The folks there were still pleasant, but I doubt that would have lasted long if we'd stayed!

Needless to say, my blood sugar was hard to control through all this - mostly running low. I kept having to sneak food when H wasn't looking, because she'd demand to eat some of it. Eating our takeout, I had to stop several times to take care of her, as did dear Hubby. I don't know how I would do it without him. In fact, I keep imagining single moms, and imagining that more than one of them must be diabetic, and some of those type 1. How do you do it?

The pump is great in that it allows me to, say, wait an extra hour for lunch. But once I've plugged in the (extra, bolus) insulin for a meal, I need to eat pretty quickly. My control is perhaps too good with the pump, because I can go low pretty fast if I don't eat soon enough after that bolus, or if I suddenly chase my daughter up the stairs and around for a while - any little extra, unexpected activity will do it. It's hard to account for that in your insulin settings, so I just keep a close eye on things and eat when I have to. That took all my spare moments these past few days, when I wasn't trying to figure out what was happening with H, holding her, or frantically trying to find something she could eat.

So, she ended up on liquids - and even some of those didn't stick - for a day before gradually pulling out of it. Oddly, no one around her had anything like it. We were lucky our pediatrician is available 7 days a week; the doc on call saw us on Sunday (yes, I was doing a lot of true mothering on Mother's day! And so was the doctor. Bless her.) Of course my thoughts ran to all sort of problems, including diabetes, but H wasn't peeing a lot (just the opposite), so I was pretty confident it wasn't that, and the doc didn't find signs of anything else serious.

Now, we're back to our usual routine, and I'm grateful - grateful for all the whining for more food, the requests to play, the potty-training cajoling and the continued diaper changes. It's all wonderful, really! I have always been grateful for H. Is it possible to be more grateful than most moms, because of all I had to do to get her? Perhaps no more than folks who've had to adopt, or who went through lots of IVF or had other trouble before finally landing their sweet package from heaven. But certainly no less. And when anything goes awry, I nearly panic (though I'm good at pretending to be in control). I'm glad to be breathing easier.

I'm also grateful for everyone in our lives who helps - Hubby, of course (who deserves the capital H), and also grandparents, aunts, uncles, great-aunts and -uncles, cousins, friends, doctors, caregivers, etc. I'm grateful for that village of ours. I highly recommend cultivating whatever relationships you've got; it's really the only way to raise a kid, whether you have diabetes or not.

Sunday, May 2, 2010

Disaster preparedness

At least we're not in Times Square in New York City right now. That's what I'm telling myself, as I figure out how to handle the "boil water" order in our area because of a major water-main break. The authorities say they hope it will be "days, not weeks" until the leak is fixed.

We're really luck, because - besides not being in Times Square, where the bomb threat happened yesterday and people staying in hotels there got stuck without their belongings for hours - we're at our summer cottage, and for the moment have drinkable water. But it will be hard to me to get to work from here. I don't want to go back home, though, because both my daughter and I are more vulnerable to the effects of the potentially contaminated water that's in our pipes there now. (Not to mention our two cats.) Yes, we could boil water or use bottle water to clean the sippy cups and other plastic utensils H uses, and use lots of paper. It would be hard to bathe her without her drinking the bathwater, though. (I love it when "authorities" tell you to keep small children from doing exactly the thing that you can't possibly keep them from doing.)

This sort of event always makes me nervous. I instinctively pat my insulin pump, as if for reassurance, and mentally run through my list of "emergency" supplies. I'm a seemingly healthy, relatively young person, and my daughter is as healthy as kids come, yet we're both really vulnerable when things go even a little awry. When the 9/11 attackes happened, I was just glad that I had plenty of insulin pump supplies on hand, because the only way to get them is through the mail; local pharmacies don't carry them. (I had ordered a new medical alert bracelet just before the attacks, and had to order it again; the mail got all fouled up.) In fact, it is almost always impossible to get new pump supplies any sooner than two weeks, even under the best of circumstances. I learned this all too well during pregnancy, when I suddenly needed to use my arm instead of my abdomen for infusions, and needed a different type of infusion set, overnight. Yes, my doctor has some limited supples - which saved me at that moment. And if I had to, I could go back to injecting, although I am so out of practice with that, I'd need a lot of supervision from my doctor. Still, I have found myself without something crucial sometimes - mostly when travelling, but sometimes just during my daily routine - and have had to scramble.

I do my best to have extra supplies on hand, and have them wherever I might need them - at home, work, the cottage, and in my purse, my car, and my husband's car. I keep extra pump supplies, test strips, sugar, and, at work, some nonperishable food (some folks once got stuck there until 10 pm during a snow storm; you never know!). I keep my glucagon in my purse, and have talked with my husband and a couple of peopel at work about how to use it. Yet, I constant have to use most of these sources (except the glucagon, which keeps expiring; I've never had to use it), so it's a challenge to keep them all properly stocked. I also keep some extra food (wheat-free granola bars) and sugar tablets in my daughter's diaper bag - although I once had to remove the sugar when I brought the bag to her daycare, because it was considered a "medication" that wasn't registered for H's use.

Interestingly, several online resources talk about disaster preparedness when you have diabetes. But most of them are either for health professionals or others who might have to care for someone with diabetes, or they're basic and basically aimed at folks with type 2 diabetes (keep checking your sugar 3-4 times a day; eat properly!). The best advice seems to come from Diabetes Monitor. Still, their list is just a starting point - you really have to individualze your own list. On mine, cotton balls are out, but teething gel is in (I use it for numbing the skin before inserting the infusion-set needle). I always carry antibiotic ointment, too. When I travel, an extra pair of socks is always there. Right now, I don't think I have a valid prescription for syringes; the list reminds me I need to get that again!

Of course, with a kid, you need a separate list of emergency supplies - more like every-day-needs supplies, because you end up using them so often. That list runs more like juice boxes, diapers, wipes, pain reliever, extra clothes, and snacks. Sometimes my own snack supplies go to H, but I try to keep them separate, just to be sure we both have what we need.

What sort of tricks do you use for keeping supplies on hand? Do news reports of disasters make you more careful - or more pessimistic about being able to properly prepare?