Sunday, January 31, 2010

In search of: A functional infusion site!

I often feel as if my diabetes is one of my children. It can behave for stretches of time, especially if I'm watching it closely. But as soon as I think everything's okay, it pulls a trick on me. Case in point: Just when I thought I could make progress with my new CGM, things backslid; every week for the past two months, I've gone through a day or two when I just can't find a spot on my body where the pump infusion set will work. I literally go through sticking myself four or five times in a day, with about an hour or two in between in cases when it seems to be working, only to find it's hit a blood vessel; blood sugar levels go sky high, and it's a fine mess when I take the set out. Needless to say, I haven't used the CGM at all; I'm finding it hard enough to find a spot for the pump.

But I don't like to just sit and complain, so I've found myself the new endocrinologist who specializes in pumps; and I'm going to have a nurse from the pump manufacturer out to my house tomorrow to see if she can't help. Maybe the infusion set where the needle stays in will help. This is what they use for lots of kids, with their small bodies and not a lot of fat.

In fact, I've always had to use the silhouette infusion sets, which go in at an angle, supposedly because I'm pretty thin (though I've only ever been normal weight, not underweight). But then, I lost 5 pounds in December, as I learned when I saw the new endo. What, lost weight, in December?? I know! I wasn't even trying, and it's not something that's ever happened to me before without a lot of effort. I guess the combination of taking care of a two-year-old and trying to get everything done over the holidays had me moving more than I realized.

Still, I'm only now back to my pre-pregnancy weight (almost 2 and a half years after giving birth). I suspect that the problem with my infusion sets is more because of the damage to the subcutaneous tissue from years of insulin injections and infusions (mostly in my abdomen), plus perhaps some residual extra blood vessels in my abdomen from pregnancy. But I don't understand why sites I've hardly ever used, like my arm, are now bleeding so often, without any signs of infection. Too bad! if it were just an infection, I could just take an antibiotic. No, no magic bullets for me, as the new endo said.

Oddly, my A1c is almost as good as during the beginning of pregnancy - it's now 6.3. This should make me happy, but it only makes me more upset to think I might have to go off the pump. What's more, everyone I consult on this - doctors, the pump reps - makes me feel like I'm the only person who's ever had these infusion-site problems. I'd love to know if anyone else has!

Sunday, January 24, 2010

Flu fun, and a discovery about insulin's cost

No fun these days - H was sick with a flu all week, which meant caring for her while trying to get some work done. I myself ended up really ill for just one day. I was glad to have the insulin pump, because I couldn't eat a bite. If I were taking shots, it would've been hard to avoid needing to eat. As it was, the hardest part of the week was listening to Elmo far too many times!

Just a follow-up note about my insulin misdelivery: I learned that the form of insulin I'm now using, novolog, is really temperature stable. Since it was in a styrofoam container, sitting outside overnight in teens temperature was apparently okay. It works.

But in the process of worrying about whether I could use this insulin, I learned that, if I were to buy the same insulin without a prescription at a regular pharmacy, it would cost more than twice as much as it did about four years ago (the last time I had to get insulin without a prescription, when my pump suddenly stopped working at all, at 10:00 one night). Actually, I was using regular humulin at that time - not quite as fancy as humalog - but I learned that even that insulin is more than twice what it cost only a few years ago. It used to cost $60 a vial; now it costs about $160!

Now, what would explain a near trippling of cost for exactly the same medication, in just a few years? I know that "humanized" insulin (made from bacteria genetically altered to produce it, as opposed to animal-based insulin) became the only thing available as of a few years ago. But even the very same, humanized insulin cost far less only very recently. Is it possible we're just being held hostage because our options have become that much more limited? I'd find that a difficult excuse to swallow, if that's all it is. If anyone has ideas, I'd love to hear them!

Friday, January 15, 2010

Weighing the evidence

My daughter is now eating all low-fat or non-fat dairy - the food group she most loves, after cupcakes! I'm still trying to get a handle on whether she's a healthy weight; she might be a little over. I certainly don't want to instill in her any obsession over her weight - more than she's going to get anyway, as a girl in our culture. But I do want to give her good habits. She loves fruits and veggies, so I encourage that. And the low-fat no-fat stuff is invisible to her.

I also try to give her "real" food for meals. This means I sometimes still feed her dinner before my husband and I eat; I've found that if I try to make her wait til dinner's ready for us all, and we're ready to eat (around 7 pm), she sometimes just snacks on junk and doesn't eat dinner at all. But sometimes, she manages to wait. I guess the difference is whether her nap is early enough that she can have a snack before 5 pm; then she can make it til family dinner time.

A couple of days ago, I searched for information about kids' body-mass index (BMI) - the real measure of whether a person is overweight. Apparently, a healthy BMI for kids is lower than it is for adults - a bit surprising, because BMI is the ratio of weight to (the square of) height. It's also different for boys and girls, whereas adult BMI ranges for healthy, overweight, and obese are the same for men and women.

So, I plugged in my daughter's digits. I used the CDC's calculator, which seems the most accurate - it asks both the kid's current age and the age at measurement, allows fractions of measurements, and considers whether the kid is a boy or a girl.

I found that if I used the numbers from her 2-year doctor's visit, she's slightly overweight, but if I use the same weight they measured, but the 1/2 inch taller height that I very carefully measured right after the visit (using a ruler, with her feet as flat as I could get them to be, and measuring twice, as opposed to the quick hand on the head the nurse used) - then, according to the CDC, she's a healthy weight.

My conclusion: I don't think these BMI figures can be very accurate for 2-year-olds. How many two-year-olds do you know who will stand still long enough to allow an accurate height measurement, especially during a busy doctor's visit? And if the difference between normal weight and overweight is only a half inch of height, then there's a huge potential for misclassification.

Have you ever wondered whether your kid was overweight? Was the pediatrician helpful? Ours was quite relaxed, just saying to go with the lower-fat milk for now - but that was at 18 months, when all the information I was reading said to stick with full-fat milk til age two, because of brain development. He said it didn't really matter by 18 months, and that too many kids already have atherosclerosis (cholesterol buildup in the arteries). I ended up switching her to 2% about a month later, to 1% a little after age 2, and now to fat-free. I still wonder whether I needed to do all that, and whether I need to worry about it now.

Tuesday, January 5, 2010

Progress, I think

My daughter has begun to notice my diabetes a little bit. When I pull the pump from my pocket, she sometimes notices, and once asked "What that?" (This is a question we hear from her almost every minute, so it didn't seem strange at all.) When she wants a snack, she says, "I need juice [or whatever she desires at the moment]." Notice it's not "I want juice." When I have low blood sugar, I always say "I need juice." I suppose the parroting could reveal worse things, couldn't it? And of course, when I leave the room suddenly to change out my pump infusion set (too often these days), she gets mighty upset. I make sure someone else is around to do this, or else do as little as I can to get by, stepping into the little bathroom right off the living room. But she still doesn't like it.

Otherwise, though, the subject hasn't entered into her awareness much. I like it that way.

Meanwhile, I'm experimenting with my new slow cooker (thanks, Meg!). I've only cooked one meal in it so far, but it was great. My daughter decided she loves chicken because of it! It was a pretty complicated recipe and took more time than I would be able to spend on a regular week day. But I could see prepping it on a weekend morning and having it ready whenever my daughter (and, I hope, my hubby) is ready for dinner. I have a few lines on simpler recipes, so I'm optimistic the cooker will prove helpful in simplifying weekday cooking.

I - or rather, my husband - also found some packaged rice and spice combos that make for really easy dinners, are gluten-free (as far as my careful ingredient scanning can tell), and are somewhat appealing to a two-year-old , as well as very appealing to adults. Oh, and they're pretty healthy, too. One is a risotto with mushrooms (brand name Alessi)that we combine with lean ground beef. The other is a jambalaya mix (brand name Vigo) that I put with frozen peas and precooked, certified gluten-free chicken sausages (brand name Al Fresco; these come in a variety of flavors, like buffalo spice and garlic). I don't like to pitch particular brands, but it's so hard to find something gluten-free, I'm proving these. We found these in our regular super market (not at all high-end). My daughter finds the jambalaya a little spicy, but she'll eat it.

It doesn't get much simpler than boiling water, dumping a package in and chopping in a few sliced sausages and peas. I have to say, it places the bar pretty high (low?) for the slow cooker. My hubby is pleased, too, that he found these - after so many efforts to find easy, packaged meals that turned out to have wheat, or else too much fat or sugar. These meals avoid all of that, and they taste like real food!

Still, we'll need more meals that work for all of us. Spaghetti works, but I have to cook two different pastas (just part of my routine now). A whole chicken in the oven, with sweet potato or rice and a frozen veggie, is a boring but workable option for us all. We've had the best luck at family meals with this safe combo.

Stay tuned for crock pot creativity reports! And if I forget, remind me to recount the pancake experiments (gluten-free and all)...

New year, new twist on the old resolutions

Well, happy new year! I've been trying to figure out what one resolution I could make. The trouble is, I have too many, and most I have to re-resolve every single day. Try to keep blood sugar on an even keel - yep, every day, all day, I try. Keep my daughter out of harm's way - all the time, every day. (I try perhaps too hard at work, too.)

So I'm looking for a higher goal, so to speak: I'm looking for balance. To remember that I never intended to do everything, all the time. I always knew I didn't want to be Supermom. I just want to be there for my daughter when she really needs me, to find some time to pursue what I most like to do, to spend quality time with my family, and to be healthy enough to be able to do all these things and enjoy them.

Okay, so it takes a lot of work and frustration to maintain that level of health, when you're diabetic, doesn't it? The other part of this resolution is to have patience with myself.

Oh, and I guess I need to have patience with other people, too. Like the mail-order pharmacy that messed up my insulin delivery, letting it sit on my doorstep overnight in the bitter cold (no, enzymes don't work well once they've been frozen, and insulin is an enzyme). This despite my tying to order the insulin in early December (they lost the prescription), then postpone delivery (they said I could postpone it later if need be), then saying they could neither postpone it nor redirect it, on what turned out to be the day before they mailed it (according to UPS tracking). So they will have to resend it - probably at no extra cost to me, except a lot of time to straighten it out. But still, what a waste.

So here are my two cents (or more) on the healthcare debate. I'd say that, for all the time I spend fighting to get the healthcare I need, I spend about as much time trying to avoid expensive healthcare that I don't need, or dealing with screwups like this one that cause waste. Most of the care I've gotten for diabetes has been essential, but the treatments for migraines and for more mild, transient conditions I've had have been highly wasteful. Like the prescription for Enbrel, a topical drug for psoriasis, that I was given when all I had was some dry skin. (I didn't get the prescription filled; I just wanted to know whether it was dry skin or a fungal problem, to know whether I should keep the skin moist or dry. Hand lotion did the trick!). If all these wasted dollars were spent on proper diagnosis and more targeted treatments, and more careful use of existing treatments, we'd be far better off. Better educational support for insulin pump users fits into this category, too. Like I've said before (several times), I wish I'd had the kind of bootcamp I had at the Joslin (during pregnancy) a long time ago. Yes, pump therapy is expensive, but it's less expensive, I'll wager, than a foot amputation!

Hopping back off the soapbox, I'd like to end on a positive note, that I am grateful for all that I have had in 2009, and still have: A wonderful daughter, a loving, understanding husband (having grown up with a mom with type 1, he's well versed), and great family and friends. Oh, and a job!