My cupcake

instead of staying up late blogging, I've been staying up late the past couple of nights making a Halloween costume.

Mind you, I have a hand-me-down lion costume, a new bee costume from my mother-in-law, and a mermaid costume that I bought recently at a yard sale. But no, my daughter has her own ideas. She's barely two, but she has decided, definitively, that she wants to be a cupcake. Over the weeks since this idea formed in her head - perhaps after the four cupcakes she ate on her own birthday - it has become more elaborate; it's now a bear cupcake.

Now, I don't get offended or feel cravings, as you might think, when I see her eat cupcakes or talk about them. Cupcakes long ago ceased to be food to me. Oh, I have a sweet tooth, all right; I find a way to eat something chocolate almost daily. But in the early years, the traditional diabetes diet trained me to think of such delicacies as rare treats. Even with the pump - which allowed me a lot of freedom relative to before - I still can't manage the sweetness of most cupcake frostings (maybe the cupcake alone, but what's the fun of that?) Top that off with the problem with wheat, and it's just not worth it.

I do vaguely wonder whether it's a good thing for my daughter to consume so many sweets at once. I know that eating sugar doesn't cause type 1 diabetes (some misguided comments from strangers to the contrary). But I an still sensitive to how bad sugar is for health, even for a nondiabetic. I do try to ensure my daughter eats a healthy diet most of the time. And I like to let her enjoy the freedom that I don't have.

It certainly was strange when my daughter began eating real food instead of baby mush. It felt like I myself was cheating when I starting feeding her bread, and when she ate her first piece of cake. I had to work hard to remember what "normal" people eat, and I had to reassure myself that it was okay for her to eat, say, pasta. Oddly, she turns out not to like pasta much, but she does like crackers, and most definitely cupcakes! She doesn't like red meat yet, and I'm happy not to push it. She gets plenty of protein, and I've often thought that, if my diet weren't already so restricted in other ways, I might have become vegetarian (probably for humane reasons as much as for health).

What does she see?

By now, I had expected my daughter would have asked about some of my "diabetes paraphernalia," like my glucose monitor, which I use all the time in front of her, or my insulin pump, the tubing for which often gets pulled out of my pocket.

My daughter notices everything else. When someone is hammering in the house next door, she asks "What's that?" When the tea kettle whistles, she asks, "What's that?" When she sees a new book, she asks "What's that?"

But when I pull my pump out of my pocket, and the tubing hangs out, and I plug in the insulin delivery with several beeps, she doesn't particularly look - nor does she clearly avoid looking at it. I guess she just figures that's part of her mommy, and Mommy is such a special person that she gets to be a little different from everyone else. I'm not boasting here; I think most moms know that Mommy is special to their kids - it's part of the job. I just know that it's going to come up at some point - the questions.

A week or so ago, my husband, daughter, and I were driving to eat lunch out, and I pulled my meter out. Now, I used to stick my finger with a straight lancet, without the "clicker." I didn't like the anticipation between when I pressed the button and when the lancet hit the skin, and I didn't like not having complete control on how far it penetrated - i.e., how much it hurt. But since having a baby, I haven't wanted to risk loose little lancets lurking around. So I've made myself get used to the clicker. Also, my fingers are calloused enough, after all the testing I've done during and after pregnancy, that it doesn't hurt so much.

So my husband is used to me calling out, as he's driving, "Okay, I'm about to do it, so no sudden stops." This time, he said himself, "Wait, I'm about to stop." I said, "It's okay, you don't have to worry anymore about that..." The little voice from the backseat chimed in, "It's okay Daddy, don't have to worry." We know she's paying attention. I think it's just a matter of time before she decides how to comment.

It's the little things...(warning: female talk)

...like a hug from your two-year-old that takes her whole body, wrapped around you. And her grin that lights up her face, and body, and everything around her. And her little voice that whispers sweetly one minute, then shouts "happy" as loud as possible the next, as she stands on the highest (gulp) climbing block on the playground. These little things make it all worthwhile.

And all is a lot, in the case of a diabetic mom. I'm pleased to find out, there are a lot of us sharing our stories out there, and they seem to confirm that this is a crazy disease that upends your life, but that there's a lot we can do to make it work, and a lot we can do to help each other - both in simple support and actual information. It seems we have a lot more in common than doctors realize - it's not just "work with your doctor to tailor your medication and diet to your individual needs," though of course we are all individuals ("I'm not!").

I only wish I had known about all of you when I was pregnant, and reading "What to Expect..." It was more like "What you would expect - if you were normal." We diabetics get relegated to about chapter 500 (OK, I exaggerate, but only slightly). There's a little bit of helpful information, like don't exercise to more than 70% of the "maximum safe heart rate" for your age (and a way to calculate that). But otherwise, it's a list of information written for someone who's never heard of diabetes before - not someone who's lived with it for, say, 20 years.

One reason I'm thinking about this is my sister-in-law is pregnant (actually, both my sisters-in-law are - how great!!). A couple of days ago, she was asking me about my experiences during my pregnancy. And we kept coming up with these points where a regular pregnancy and a diabetic one diverge. Like, what did I think of the advice to avoid all artificial sweeteners during pregnancy? That's one of the pointers I just had to laugh about while I was pregnant. You want me to test my blood sugar 12 times a day, eat like a bird despite massive cravings (nothing like a regular diabetes diet), AND avoid artificial sweeteners (and coffee, while I'm at it)? I don't think so. Not to plug a product, but I had been using Splenda before pregnancy, and I figured, since it doesn't actually get metabolized and passes right out of the body, it was okay, as long as I wasn't guzzling diet Cokes all day. I drank one (strong!) cup of coffee every morning throughout pregnancy, with Splenda, and tried to avoid artificially sweetened drinks and food otherwise, but I did have diet Coke occasionally - better than a margarita, right? (Maybe the coffee is what made my daughter so lively!)

Another diversion from the norm (warning: the faint of heart might want to skip this paragraph): My sister-in-law is getting a bit nervous (as any woman in her position has a right to be) about the impending birth, worried about when she'll go into labor and how she'll handle the pain. I had little advice to offer. For me, the "when" was just "when is the doctor going to fit me in?" because I wasn't allowed to go past my due date and would be induced if it went that long. (Actually, I ended up being induced a week ahead of my due date, because I developed pre-eclampsia and I looked so swollen, I think the OB just took pity on me.) And after 22 hours of labor, I had an emergency C-section (probably just because my baby's head was, well, huge, but also because I didn't progress). I experienced some of the pain (during those 22 hours), with an epidural that didn't quite stay in right (but I was glad to have something!). But of course, when it came time, I had complete pain blocking for the C-section. That said, plenty of women have C-sections, so maybe my experiences will help my sister-in-law after all. Still, not all women have an IV drip (glucose and insulin) attached to them, right from the get-go, and get plopped in the bed, with no chance to stay upright, walk, or do any of those things that move labor along.

It just seems like, with every little thing, diabetes creates an alternate universe, so that you can feel connected to others only up to an extent, but then suddenly your experience veers off and is completely foreign from everyone else's. I love being a mom, obviously because I love my child, but also because it's given me a chance to connect to other women in a way I've never experienced. Yet all these little differences remind me it's not quite the same.

And yet, when my daughter smiles at me, none of that matters.

Pandemic Panic

With any luck, tomorrow I will wait in a long line and get the seasonal flu shot at a local pharmacy. I missed the clinic at work (I was working from home). Then the local grocery store’s clinic ran out by the time I got there. I thought it would be no problem, as usual, to get one at my doctor’s, but it turns out they’re not making it available, either (whether they actually have any or not, I can’t tell; I got different messages from different secretaries).

I’m pretty nervous because the last time I didn’t get a flu shot (about 19 years ago), I was hospitalized. Now, I’m not even talking about H1N1 (formerly/sometimes known as swine flu). I won’t be able to get the first round of that vaccine that’s available because it’s live-attenuated, so folks like me with abnormal immune systems aren’t supposed to get it. We – who are among the most at risk – must wait. I’ll be sure to get my daughter vaccinated ASAP, with whatever is available. At least she can get the live-attenuated vaccine; she’s healthy, thankfully.

I’m always surprised to hear people say they don’t get flu shots because they’re afraid they’ll make them sick – or it’s made them sick in the past. Yes, there have been odd reactions, as there are to virtually anything out there, from drugs to herbals to foods to bug bites. And for most people, getting the flu is bad, but not usually life-threatening (although it can be even for healthy people). So maybe the risk/benefit ratio is not so strongly in favor of vaccination for them. But I’ve had the shots for almost 20 years running, and all I get is a woozy head for half a day and a sore arm for one or two days. Now, oddly, with H1N1 in the news, people apparently are rushing to get the regular vaccine – leaving those of us who usually get it, and most need it, in the lurch. What a mess.

Still, the regular flu doesn’t usually hit its stride until January or so. In fact, in recent years we’ve been hit with seasonal flu in March or even April (I’ve gotten a little bit sick, but not as badly as I would have if I hadn’t been vaccinated). I think I’ll get that shot in time.

I am far more worried about getting the H1N1 vaccine in time, because that flu is circulating now. Lots of things kill people every day, and it turns out even healthy young people might get really sick (or worse) from this new virus. But I know just how quickly I can go from appearing absolutely, perfectly healthy to being extremely sick. Once, when I got a kidney infection, I waiting for two hours in the emergency room before throwing up on myself repeatedly. Then, the nurse chastised me for not coming in sooner. They’d taken one look at me in triage and saw a seemingly healthy young woman. But appearances can, of course, be horribly misleading. Anything that hits an otherwise-healthy person hard hits me at least 3 times as hard.

If only I were more OCD, I’d be able to get through this with just obsessive hand washing. But I can’t seem to avoid putting my hands on my face all the time after touching things, and even though I do wash my hands regularly, it’s probably not enough for these circumstances.

And now, of course, it’s not just me that I worry about if I were to get sick, it’s my daughter, and my husband. Hero that he is, he’s offered to get whatever vaccines he can to protect me and our daughter, even though he normally wouldn’t get any flu shots. And if he can get the live-attenuated vaccine, but I can’t, that’ll still help me. So thank you, dear!

Solving the Dinnertime Dilemma?

This is just a brief post to thank Sarah for the advice to try crockpotting (if it wasn't yet a verb, I'm making it one!). I hope to join the converted ASAP. She also provided a helpful link, http://crockpot365.blogspot.com/. Actually, what I really want is gluten-free recipes (as she noted), and that link seems to be broken at the moment. But I'll check back when I actually get a crock - er - slow cooker. I’m sure a lot of the recipes will work well.

The gluten-free topic is almost a blog site unto itself (oh, yes, it is: http://www.celiac.com/). By now, a lot of people have heard of celiac disease, and some also know that it’s more common in people who, like me, have weird immune systems (me by dint of the diabetes). Well, I’m not at all sure that I have celiac. I weaned myself off wheat about 16 years ago, when I started getting migraines (complete with the severe digestive distress that’s a hallmark of true migraine – no, I won’t provide details, Halloween is coming soon enough for those who like guts and gore). What made me think of dropping wheat was that I’d also broken out in hives after eating granola. I did feel a lot better when I stopped eating wheat, and I also lost 10 pounds. But I kept on having migraines. And about 12 years after I’d stopped the wheat binge (I was really addicted – not good for a diabetic), my doctor tested me for celiac disease, and it came back negative. The only problem is that some reliable sources (e.g., http://www.celiac.org/cd-diagnosis.php) say you need to be eating wheat for any of these tests to work, while others have said that certain blood tests should work even if you haven’t eaten wheat. So who knows whether I have celiac or not. Actually, I suspect I might have a straight allergy to wheat, given the hives and other symptoms I had at the time.

Either way, I’d rather not repeat the symptoms I had (as my daughter now says when eating lettuce: “yuck!”). So in addition to the diabetic diet and cooking around a toddler’s habits, I avoid wheat as much as possible, which rules out a lot of even partially processed (a.k.a., easy) food. When our daughter was a couple of months old, my husband tried several times to help with grocery shopping but ended up with a lot of food that I couldn’t eat. He’s just not used to reading labels obsessively like I am. (To his credit, he still helps with the shopping – he just doesn’t try to do it all.)

The combination of the diabetes and the wheat-free diet also means I haven’t tried food-shopping services that have saved a lot of parents. I wouldn’t be able to allow substitutions when they didn’t have what I wanted, and I might end up without the food I need (when you take insulin, you don’t just have to avoid certain foods, you have be sure you eat the right foods at the right times, more or less, even with a pump). I might have to break down and try it sometime, but so far the supermarket around the corner and my fears about the havoc it might wreak have kept me from experimenting there. But I’m gung-ho about the crock pot!

Dinnertime Dilemma

My latest dilemma has to do with scheduling. That seems to be the biggest issue with parenting by itself (other than guilt), and also with having diabetes, so the two combined is just a logistical logjam sometimes.

Right now it’s dinnertime that’s causing trouble. So far, my daughter (now two) has usually eaten dinner before my husband and I do, unless we go out to eat (pretty rare). We traditionally eat dinner pretty late, around 8 pm. (That might sound odd to some people with diabetes, and it used to be impossible before I went on the pump. Perhaps I’ve been flaunting the freedom the pump has given me - why not?). Really, to be able to make a decent fresh meal after work, it takes that long. And now, though I don’t cook the fancy stuff I used to, it takes that long just to cook anything at all. And it’s a lot easier to count carbs properly when I don’t have my toddler demanding my attention every moment.

But eventually we’re going to have to find a compromise. Oh, I supposed strictly speaking we don’t have to - we could go on this way indefinitely, it wouldn’t kill anyone. But it would be better for my daughter to learn to eat dinner with us, for all the various reasons the advice-givers cite, but also just because I’d like to have family dinners. And she’s apparently decided the same thing, because a couple of nights ago, my husband asked what we’d be having for dinner. I said “soup.” Daughter H was eating her beans and rice. A few minutes went by, then she said, “Where’s Daddy’s soup? Daddy eat.” Getting upset, despite our attempts at distraction, etcetera. So we went through a sort of half dinner routine, heating a little soup in the microwave, sitting down with her, slurping for her benefit.

Amusing as it was, I wonder whether we’re headed for more of these divided-dinner nights, and how it’s going to affect my blood sugar. Maybe positively, who knows; but it always takes a screw-up or two before I figure out a new routine, or so it seems.

I’d like to get to the point where we have a compromise dinner time - say, 7:00 (like my family had when I was a kid). But I’m not sure I can accomplish that without a major change, perhaps cooking casseroles over the weekend to last part of the week. Chances are, I’ll manage that one weekend out of every month. Ready-made soup was easy, but we’re not on a soup diet, and besides, ready-made is not that healthy. We’re already eating far more ready-made than we used to, and more than I’d like.

Is this how you get to everyone going in a different direction, catching meals on the fly (and gaining too much weight in the process) - everyone going to soccer practice or PTA or some other nonfamily event? I’d hoped that with a small kid, we could manage the family meal, for a couple of years at least.

But I try to envision it: Cook the meal, all the while helping my daughter find something to occupy her time (even watching a video is not a solo activity for her yet). Sit down and divide my mealtime helping her eat (even if hubby helps, she wants my involvement), counting my carbs, then cleaning her up and letting her down from the table (because she’s done eating already), then remembering whether I’ve already programmed my insulin, then maybe eating. Then her bedtime routine, prepping her lunch and snacks for the next day (and assuming hubby helps with dinner cleanup), and maybe a chance to complain about it on my blog. It’s bad enough as it is, right?

So I think that we will postpone the family-dinner effort until she’s a bit older, despite my dream of having that one vestige of Cleaver-like family bliss, and with the hope that we don’t have to do the staged dinner too often.