Wednesday, September 22, 2010
Lots of little diabetes-related scenarios pop up with H these days. Like, yesterday, I had my pump infusion set in my upper arm (part of my rotation to restore my abdominal tissue). H gave be a big hug, which evolved into climbing me, and she grabbed my arm and tore the infusion set out. I yelled, "Ow, ow, ow!, Stop!" - too late, but she did stop, and when I explained that she shouldn't touch the thing on my arm, and I was sorry to yell, but it hurt, she said, "Sorry, Mommy," gave me a light hug, and went on playing.
Of course, I felt guilty immediately for yelling, but that combination of pain and fear of whether I could get another infusion set to go in my arm made me a little sharp. I don't want her to think I'm as delicate as china - that she shouldn't hug me! But I do want her to be careful when, unfortunately, I have to put my infusion set in such an exposed spot (I bang it on doorways all the time, too!). I suspect she doesn't think of it as a big deal - just part of life with mommy.
H doesn't bat an eye when I test my sugar, even at the kitchen table. But she does want to eat whatever I'm eating, which includes glucose tablets (no, I didn't share those!). When I told her recently that it was medicine, she said, "I want medicine, too!" I ended up saying she didn't need medicine because she wasn't sick, and she dropped the subject. The only "sick" she's ever experienced has been viral, so she probably thinks my "sick" is just temporary. I'm sure the day will come when I have to explain it's long term, but something I can live with - but that day hasn't come yet.
Since it's 5 am, I have to go - but I hope I'll be back soon!
Sunday, September 5, 2010
I've still been too busy, working (work work) during nap times, prepping for the birthday party and for the first day of preschool (yikes!), both happening within a couple of weeks. My diabetes care once again is taking a back seat - I try to follow my usual rules - eating certain things and not others, testing often and adjusting accordingly at the moment - but otherwise I'm not really keeping track. That's the honest truth: Sometimes I run on autopilot, and I just hope that my years of trying to have good habits pulls me through. I know that I have to really think about my numbers -- you know, look for patterns -- to avoid swinging suddenly out of control. But I also know I can go for a week or two without doing that, and usually get away with it. And sometimes my brain is just too full (cue the far Side cartoon).
Maybe by the end of my vacation I'll find some time to remotivate. Ironically, it's precisely because I'm not able to get a truly relaxing vacation that I'm taking a sort of vacation from my diabetes. But no, I never truly do that - never go on binges (I haven't in many years, the consequences are just too painful) or stop testing; in fact, I test more often when I can't stop to think about it, just to be sure I still keep on track.
Sunday, August 15, 2010
DD made a sudden developmental Great Leap Forward (someone could have warned be about this!). We were expecting to send her to preschool only part time this Fall, but from one month to the next, suddenly her current daycare was no longer enough for her (all the kids there are younger than her), and we realized we had to switch to full-time preschool. Fortunately, we were able to make that change with the school we'd signed her up for. But it meant acknowledging that H is growing up! The part-time schedule was partly for her, but also for me to adjust gradually to that process. It seems nothing is gradual with my daughter - it's all sudden shifts. Her physical growth has been the same way (she's not yet three, but she's the size of an average four-year-old).
I've been frantically reading tons of parenting books, trying to catch up - reading far ahead of her age to try to get the right information. Her physical and mental growth are way ahead of the "norm" (but no kid is the "norm," are they?). Her emotional growth is just normal, though. It's hard for her, when people look at her and hear her speak, and think she must be much older than she is - i.e., they expect so much more from her than she can handle - asking her things like, "Do you want lots of boyfriends?" (Maybe they're just trying get me going!)
H's physical greatness (not just girth, but height, at this point; she's shot up!) still makes me both proud and nervous. Proud because, silly me, I still have some sense that her thriving has anything to do with me (very little, directly!). But nervous because I worry that my own diabetes contributed to her being big from the beginning, and because that seems to set kids on a riskier path, as I've written about before. It makes me the constant food police - oh, those cookies! We're trying to wean her from thinking of them as her just dessert for using the potty. But other folks still have no qualms about offering them to her. 'Nuf said.
I've enrolled H is swimming classes at the Y, and we went together for the first time last week for an open swim. We've swum together before at other pools and in the ocean. But I want this to be an option for her all year long - to help with her overall health, and also to use up some of her constant energy. She loved it - hooray! Of course, several of my friends had their kids in swimming lessons from age one or so; I feel so behind! That's a constant feeling of motherhood. But I was in no position to be in the water exercising with H at that point - I was still nursing, and the lows could come on pretty suddenly. I wonder how I'll do now. I'm planning to sign up for the class where she's gradually weaned from my side, and is swimming without me (with a floater) by the end of the class series. I need the exercise, too, but I still worry that I might have a low in the middle of a class. It's only half an hour, though, so I should make it. I do wonder whether I should tell the instructor that I have diabetes. I wouldn't think so, usually. I've still never passed out from a low (knock on wood!). But lately my sugars have been running low very suddenly (again). What would you do - would you tell the instructor, or not?
Wednesday, July 28, 2010
My BG went high at first (little did I know, my hormones were also ahead of cycle and contributed to this). Then, with all the running, they went low. In fact, I had my first-ever double-dip low: Down to 40, then up to 90 with glucose in about 20 minutes, then back down to 38 within another 20 minutes, despite additional food and no extra insulin. I got my glucagon kit out of my purse (where it normally resides), set it on the table, and told hubby what was going on. Fortunately, with a little more glucose, things normalized. I think the combination of a slight time change (meaning a 1-hour delay in meals), the extra exercise of chasing H, and my hormones gave me a triple whammy (I refuse to call it a perfect storm!). I only realized the hormone piece of it after the fact, one week later (ladies, you know what I mean, right?).
The other "fun" was going through airport security. As always, I had a letter from my doctor explaining that I need to wear the pump at all times and carry supplies (insulin, syringes, sugar, etc.). I liked that the doctor also wrote that I can't go through the x-ray machine because it can erase the pump's data. I've known about this for a while - it's really rare, but it can happen. It doesn't "kill" the pump, per se. But pump users know how bad it would be to lose all your data: Some settings you could easily reprogram, but others are ones that you constantly change, it would be nearly impossible to keep a separate record of these to be able to reset them if they're lost. What's more, you would almost certainly miss your flight because of the time it would take to reprogram. And no, Virginia, it's not a good idea to wait to reset the pump; you can go for about an hour at a time without the pump, but that's it.
Besides, my pump always sets of the alarm anyway. After the first three or four times, I decided it wasn't worth it because of the risk of lost data, and I'd have to get a pat-down anyway. But I have actually never gone through airport security without some security person saying "Oh, you can go through the machine, it won't set it off/won't harm the pump." They obviously need educating on this matter. ADA, where are you on this? It's time for me to write to them.
So, here was my experience this time (on the way home): I tell the initial security person I will need a pat-down and ask where to go. He narrows his eyes and says, "You can go through the machine." I pull the doctor's letter from my bag and say, "No, I can't. Here's a letter from my doctor about it." He waves the letter off (no one has ever actually read one of these letters, but they are useful for making people take me seriously), then tells me to speak with the personnel at the actual machine. I put my purse, carry-on (with all my supplies), shoes, H's food bag, diaper bag, and stroller on the belt. Hubby holds H's hand during this, while she's saying, "Mommy! I want to stay with Mommy!" I explain that I have to go through separately but that Daddy will be with her and I will be back with her soon. She, looking doubtful, goes with Daddy, after he puts all his items on the belt.
Meanwhile, I ignore the man waiting behind us who mutters several times, "What's taking him so long?" (meaning my husband; he doesn't see hubby is with me and H). He says to the narrow-eyed security guard, "When I was in the army, we got on and off those planes in no time. Why can't this guy do that?" I bite back my comment - "Since when have two-year-olds been in the army?" - and carry on. (Note to airport security: Don't send people with young kids through the military personnel line. You're asking for trouble. It was a shorter line, though, so thanks for the thought.) I step up to the x-ray machine, tell that person I have to get a pat-down. A small conference between guards, then I am let through a side gate and taken over to the pat-down area.
I won't describe the pat-down routine in detail; it's slightly different every time. You've probably seen it, or experienced it. I just endure it, explaining calmly that I have the pump, it's attached to my body by a catheter and has to stay that way, and offer to show it - but I don't just pull it out of my pocket, until they ask me to. During the pat-down, I try to keep an eye on H and on my belongings. The latter tend to get opened and rifled through - er, checked, simply because I'm getting a pat-down, or perhaps because the security personnel get suspicious when it isn't picked up immediately. In this instance, the woman puts my carry-on back through the x-ray because she saw H's (empty) sippy cup in it.
At the end, I struggle to make sure I have everything I came through with, because other people were annoyed that my stuff was holding up the line and tried to shove it aside, and the security folks also shoved it along (that is, the stuff they hadn't opened). So some of my stuff is with the security folks, some is on the belt, H is clamoring to be picked up, and the security folks are telling me to hurry along.
But all in all, this was a relatively incident-free trip (don't even ask!). We had some fun, we're back safe, and we're mostly back into our routine. My BG is much better. I wish I could say the potty-training is going well, too, but travel always throws that sort of thing off. I'm sort of grateful to be back at it, though.
Wednesday, July 14, 2010
Wow, I thought (epiphanies generally beginning that way), my mom used to make sure I ate enough, so I wouldn't run low (not that it always worked, but she tried). The worst thing, in her mind, was running low - not going high. To me, it was sometimes annoying, because I was probably more terrified of running high - all those scare stories about complications actually got to me. The scare stories about people never waking up, having gone too low in their sleep, also were scary, but I knew that just eating a lot wasn't the way to avoid lows (because swinging from high, to low, etc., was - is - the likely result of overeating). I thought my mom wasn't "getting it."
But, as I lay in bed this morning, too tired yet to get up but thinking, "I need to get up, I can't let myself go back to sleep, I might never wake up again," I realized - wow! - my mom was just being a mom when she was constantly feeding me. She literally feared for my life. To her (I realize now), the worst thing in the world would be not being able to wake me up one morning. Just like, when H was an infant, I crept into her room constantly, leaned down, and listened for her breathing. I really did. And now, when she accidentally steps from the end of the driveway, just into the street, my heart leaps. I just couldn't stand it if anything ever happened to her. I hover. She hates it.
So now, of course, I understand why my mother did what she did. It's not always rational, this motherly fear. It can make us do silly things - like putting helmets on our babies as they begin to walk (no, we didn't, but I could see why people came up with the idea). Or overfeeding our diabetic kids, because we just couldn't bear it if they didn't wake up. (I consider myself to be diabetic - just not "a diabetic." No offense meant to those who consider themselves to be people with diabetes.) Never mind the long term - that the kid needs to learn not to walk into the street (well, keeping her safe until she learns where the driveway ends and the street starts doesn't seem so unreasonable). Never mind that constant high blood sugars will do damage down the road.
Actually, the other reason my mom probably did what she did was the way she was taught to care for me. At the time, high-carb diets were in, including for diabetics. It was supposed to be complex carbs - whole-wheat bread, etc. But it was probably more than is good for us. Cereal with milk and fruit, plus toast with jam, and eggs, plus oj - that was a typical recommended breakfast. (Did they think I worked on a farm?) I hardly ever ate that way, but my grandfather, who had type 2, did (it didn't work very well for him; or maybe it was the bacon he ate along with it). As a teen, I did have cereal, milk, and oj, though. Then a morning snack of crackers and cheese or an apple (apples were my mother's cure-all, I always had to carry one), lunch of a sandwich, fruit, and maybe chips (low-fat chips weren't around at the time). Afternoon snack: tons of crackers and cheese or pb (my cholesterol wasn't great). Or maybe half a box of cereal. Lots of white rice with dinner, and maybe angel food cake for dessert. Yikes! I did figure out that I couldn't eat that many carbs, even of the complex variety - and the sad thing is, I figured it out before anyone else told me, all medical specialists included.
These days, I might have a little granola with my plain Greek yogurt for breakfast (plus a little milk in my must-have coffee). Definitely no oj - I'm far too insulin-resistant in the morning, even using the pump. I might have some blueberries, or even a little banana, especially if H is having some. I do actually eat a morning snack (a hold-over from pregnancy - but also, I get up a lot earlier than I used to!): either a granola bar, or the yogurt if I had to scarf the granola bar for breakfast instead. I take a big bolus with that snack.
Lunch is usually left-overs from dinner (pretty small portions), or a salad with low-fat chips. Maybe some fruit, if I'm in range. Afternoon snack (if I eat one), either another granola bar (I eat too many of these!), yogurt, nuts and raisins, or peanut butter and crackers (but not nearly as many as when I was a teenager!). Dinner is pretty low-fat. We've cut back on red meat because H just doesn't like it much - this is good for us all! I still eat ice cream at night, but it's often the low-fat variety, and I've figured out the dual-wave bolus for the real thing. I think I can eat more (and more carbs) than I otherwise would if I didn't have H to run after. But my diet is still a lot less carb-centric than when I was a teen. And that's okay, because I'm a lot less worried about running low (the pump has very much to do with that). Ah, let me correct myself: I'm a lot less worried THAT I will run low all the time, especially overnight (last night was an anomaly). I'm still worried - let's say vigilant - about catching the lows, and the effects of the lows. I can't even imagine how I'd handle that if it were H with the diabetes. I'd probably hover. Bite my nails. Pack an apple maybe.
Saturday, July 10, 2010
I get a blip of this memory now, and then, zzzziiip! The needle scratches the record, and I return to my current reality: Long days of work in the office, followed by chasing H around the house, trying to get her to the potty, and make dinner, and clean up the breakfast dishes, and get H to bed, and prep lunches for the next day, and do a little laundry so H has underwear. Maybe change my pump (infusion set) out, if it's not too late (if I can stay up at least an hour, to make sure it's working right). I stay up later than I should, trying to capture some of that summer atmosphere, and the daydreaming that went with it.
For some reason, summer always makes me think about what I'd like to do with my life -- you know, when I grow up. Am I where I'd like to be? Where do I want to be in, say, 5 years? But most of all, how do I make the most of the summer, right now? I haven't had much chance to do this kind of thinking yet, though - we're always so busy around the Fourth with family and friends, and this year was particularly crazy. We hosted several meals for a crowd, and some house guests, watched one parade and a bonfire (of which H was scared), and participated in another parade (in which H was terrified of our own float). All while still working on the potty training (a.k.a. many, many outfit changes and laundry). Also while trying to stay cool without air conditioning (although our summer cottage is a little cooler than the rest of the world). Fortunately, we broke down a couple of years ago and put AC in every room in the house (not central air - can't afford to retrofit our 100-year house with that - but a unit in every room). I feel no guilt whatsoever - I help the environment out in other ways.
I appreciated the reminders from a posting on drugs.com, via Diabetic Connect, about the special risks we folks with diabetes face in the heat. I certainly notice that, although I sweat, I don't do that well in the heat - I think my sweating is a little delayed, because of a slightly wonky autonomic nervous system (like most of our bodies' systems, this one can get thrown off after years of diabetes). I'm in air conditioning more than I used to be (in my childhood), but when I am in the heat, I take extra precautions to stay hydrated, to not spend too much time in the direct sun, wear sun screen when I do, and check my BG extra often. In fact, switching between AC and no AC all the time makes it even harder. I need a lit less insulin in high heat - I think it's because the insulin works faster in the heat (insulin being an enzyme, and all enzymes work faster in warmer temps). Also, I bet I eat a little less in the heat. So I crank down the pump significantly. Then, when I go back into AC, I have to amp up the insulin right away (or, uh, as soon as I get that first high reading).
Also, all the weird summer foods make for a lot more guess work in carb counting. I realize now that part of my problem with my pregnancy (lo these three years ago) was that I was eating out a lot more (as we do during the summer), so I got a lot more salt - no doubt that contributed to my maternal hypertension, as much as the heat and the diabetes itself did. So, between the extra salt (and calories), and the greater uncertainty about what I'm eating, summer is indeed fraught. I take every chance I can get to balance that out with exercise. And oddly, perhaps, yoga is figuring high on the exercise list. I need the stress busting maybe even more now, when I'm trying to balance work, H and her potty training, and the extra summer activities.
Saturday, June 26, 2010
We seem to be back on track now, so I'm glad we stuck with it. Diapering 37 pounds of wiggling and giggling is too much work! Sometimes I wonder where I get the energy to be a parent. Mostly, it comes from watching H. I get to eat a lot of extra carbs, too, I think. I snack almost as often as she does. I only hope that my regular eating isn't making her eat too often; any time she sees me eating, she wants what I'm having. I try to keep it healthy and low-fat, and limit amounts. I also try to keep H's activity level higher than mine. We go to the playground a lot, so all I have to do of fret over whether she'll fall of the high structures while she runs around like a nut.
It was maybe even harder to deal with this setback because we'd finally made it out of the woods, so to speak. (As in, does a bear...?) We'd just started coming out of a bad rut we'd fallen into because of the potty training. Not only would H want a "special treat" after using the potty - every single time - we also couldn't stray far from said potty, so trips to the playground became rare. I could tell both she and I were on the wrong track, healthwise. The treat would be a cookie or sometimes even a cupcake - that was what I had on hand, left over from what someone else brought to our house, at the beginning of training, so that's what she started demanding. Now, you may say, so what, a not-yet-three-year-old girls "demands" shouldn't be hard to handle. But then, you don't know toddler girls, and you don't know my H in particular. Sure, I could ignore the demands, or try to persuade her in another direction (here, have an m-and-m instead of a cupcake), but a full-on fit would ensure - followed by a nice puddle on the floor. See, parenting is this funny thing where your ability to control situations is always being challenged, if not out-right threatened.
But all was not lost. I switched to giving her a treat only after at least a half day of good potty use. I also made her play more in the yard, and started heading to the playground as soon as she uses the potty after arriving home from daycare. This last part isn't always easy, because once home, H settles into a routine that often involves TV. It's hard to get kids to switch gears. But she's old enough that she can hold a reward idea in her head for a decent while - so waiting a couple of hours for a cookie is usually possible, and the idea of the playground manages to lure her outside eventually, if I keep reminding her of the reward that's coming.
I'm not even sure how we got into the routine of the "special treat." When potty training started, I didn't want to use sweet rewards; I tried just praising H, and also giving her stickers and, a couple of times, bigger, non-food presents. She really liked all of this. But at one point we had those cookies and cupcakes in the house, and I let H have one and said it was a reward. I guess that was a mistake. (Ya think?!) I was partly horrified (all that sugar!), partly pleased that she could actually eat the stuff without any apparent immediately bad effects (like I would have), and partly desperate to make potty training work. But oh, the back-tracking! And yes, maybe the lure of the treat was that much greater because we hadn't allowed it before - because I just don't eat that stuff, and don't have it in the house.
Still, as I started out saying, things seem to be settling in well, we're down to one cookie a day, and I am breathing a lot easier. Motherhood is a symbiotic relationship, in that your daily routines are intimately intertwined. Anything that affects one person in this relationship deeply affects the other - and diabetes makes that even more true, or maybe just makes it more noticeable.
Tuesday, June 15, 2010
I'm three days into my restart of the CGM, after an aborted start several months ago because I suddenly had trouble finding sites for my insulin pump infusion. This time, I used my "hip" (what a great euphemism!), to preserve my abdominal sites for the pump. The introducer needle wasn't that painful going in - or so I thought, until I nearly passed out. Okay, so 5 minutes later, I was recovered enough to finish the setup. I guess I have more muscle in that site than I expected. I also seem to have a really strong inflammatory reaction, because, just like before, it took an extra couple of hours for the device to start taking readings (beyond the two hours they say to wait before "calibrating" by telling the device what my real blood sugar level is, as opposed to the interstitial-fluid sugar level that the CGM measures).
So, I got it going. The up side is, it really works; it gives really accurate readings (although with just enough of a time delay not to be a useful basis for insulin doses, at least when the BG is changing rapidly). But. That first night, a couple of hours into my precious sleep, it starting buzzing (like a car alarm, I swear), to tell me the sensor was out of range. My insulin pump, which receives the wireless signal from the sensor in my "hip," was under my pillow and on the opposite side of my body from the sensor. The device can't send signals through the body. So any time I roll over in my sleep, it'll go out of range, and if it stays that way for 40 minutes, the car alarm buzzer goes off. I grumbled and moved the pump to the correct side of my body and tried to stay that way the rest of the night. A couple of hours later, the thing beeped again to tell me the CGM battery was low (which it shouldn't have been). I grumbled, got up, pulled the transmitter away from the sensor and put it in the charger. Then stuffed it in a drawer, because the charger light blinked in the dark like a police car light. At least I could sleep the rest of the night.
The next night, I got another wakeup call because of an out-of-range sensor. Then H woke up a couple of hours later. Then, after a couple of hours of fitfully trying to get back to sleep, the CGM buzzed again - to let me know I would have to calibrate in another 45 minutes. And all I wanted was another half hour of sleep! I didn't even have the low or high BG alarms set.
My sleep is precious to me. I already don't get enough. I'm one of those folks who need at least 8 hours a night. I usually get about 7. With the CGM, it's down to 5, and it's like being a new mom again, with so many interruptions I don't get to dream enough, and daytime feels like one long dream. As a result, it's been nearly impossible to do my work, I've gotten to work late every day, my hunger level is way up (harming my blood sugar), and I've had to drink way too much coffee (further affecting my blood sugar). I'm sure it's affecting my driving, too.
I called the CGM manufacturer yesterday (Medtronic, the same as my pump manufacturer). Now, I should say that the Dexcom I used during pregnancy had the same problem, so I knew it was unlikely they'd tell me how to turn these alarms off. I just wanted to give them a piece of my mind. Predictably, the rep said those alarms can't be turned off, to be sure the device is working so it'll alert me if my BG goes low (never mind that I could, and did, turn off the actual low alert). I told him I don't need the device to alert me to lows, I just want the data. I've managed to live 25 years with this disease, without a device warning me about lows (I told him), and suddenly they think it's their responsibility to be sure I'm alerted to lows? How paternalistic (I didn't actually say that part; too bad!). The rep suggested I keep the pump right next to me, closer to the sensor. But with a husband and two cats in a queen-sized bed, that's not reasonable. We can't fit a bigger bed in our room (would insurance cover a house renovation?).
Really, am I the only one who thinks it's abusive to force us to endure sleepless nights, just to know what our blood sugar is during that traditionally "black-box" time? It's like transporting the hospital environment into my very own bedroom - like having doctors and nurses interrupting my biological clock to tell me what my body needs, any 3 am of the week! No, thank you.
So why am I still putting up with it? because I'm desperate to get that information. But I call tell you, I am not going to use this device more than very occasionally. It's such a shame; if the manufacturer would just get out of the way, I could make so much better use of this technology.
I know, the whole point of being online with this stuff is to help and get help from others in the same situation. I'm really hoping someone else out there has figured this one out. If you have, please let me know! If not, let's get them to fix these devices so they'll really work.
Wednesday, June 9, 2010
Speaking of what I'm "allowed," I was pretty peeved by a New York Times opinion piece a couple of days ago, by some sort of philosopher, about whether people should really have kids. Here's the beginning of it:
Have you ever thought about whether to have a child? If so, what factors entered into your decision? Was it whether having children would be good for you, your partner and others close to the possible child, such as children you may already have, or perhaps your parents? For most people contemplating reproduction, those are the dominant questions. Some may also think about the desirability of adding to the strain that the nearly seven billion people already here are putting on our planet’s environment. But very few ask whether coming into existence is a good thing for the child itself. Most of those who consider that question probably do so because they have some reason to fear that the child’s life would be especially difficult — for example, if they have a family history of a devastating illness, physical or mental, that cannot yet be detected prenatally. All this suggests that we think it is wrong to bring into the world a child whose prospects for a happy, healthy life are poor, but we don’t usually think the fact that a child is likely to have a happy, healthy life is a reason for bringing the child into existence.
Yes, before I got pregnant and during pregnancy, I did think a lot about H's prospects for a healthy life, given the potential for my own diabetes to affect her development, and also the risk that she might someday get it herself. I still think about that second possibility, and hope fervently that it doesn't come to her - or at least not at too young an age. (What's "too" young? I don't know. But you know what I mean - it's particularly hard when the kid has no idea why he or she has to take shots, etc.)
But, contrary to the author's statement, I did in fact think that my child's own potential for happiness was a reason to bring her into existence (I guess I'm one of those "few people"). And that gets at the crux of what bothered me in what he wrote: The implication that being "unhealthy" might be a reason a child should not have been born. It was stated so off-handedly, as if to say, "of course, we're assuming the kid will be healthy; if not, the prospects for happiness are just too grim to contemplate." I've had this conversation with "healthy" people before: Once, someone I know said she wouldn't want to live if she had to be in a wheel chair. Several others agreed. I just thought, well, don't judge it until you're in the situation - you might think differently. Even with all that I've been through - not only the diabetes, by 14 years of migraine hell - I am still very, very happy I'm alive. I think too many people on the other side of that fence discount the very value of just living - the notion that life is worth it, even when it's far from perfect. (Never mind that, from a biological perspective, "just" living is the point of it all!) I thought, if I can even approximate all the good experiences I've had, and give them to my child, then chances are good that she will be glad she's alive.
My endo during my pregnancy said she'd encountered numerous people who think someone with diabetes shouldn't have kids. She works hard to counter that notion (thank you!). I would say to such people, first, it's not that simple: The genes that make us prone to diabetes can also be helpful in certain situations, like famine, so they're not "bad" genes, per se, just not helpful when food is as plentiful as it is these days - and you never know when that might change. Okay, that argument works better for type 2 than for type 1, but the genes for type 1 are probably even more numerous than for type 2, so some of them are, by themselves, probably "good" genes - they just got combined in a harmful way (and they also needed a bit of environmental bad luck). Throw them together in a slightly different way - which is what happens every time a new person comes into being - and those same genes might create something wonderful (like my daughter!).
And two, I would say, hey, there are a lot worse things that people can pass along to their kids - like attitudes of hate and intolerance.
When I was pregnant, I did all I could to make sure my unborn daughter's prospects for a healthy life were the same as anyone else's. I felt I owed it to her - after all, she didn't ask to get born, let alone born to someone with diabetes. But I also knew that it wasn't entirely up to me whether she'd end up healthy (it still isn't). I can only do my best. And I know that less-than-perfectly-healthy isn't a reason to wish I hadn't gotten pregnant in the first place. I can only hope she always thinks so, too, but I suspect she will: Every night, when I put her to bed, I tell her, "I love you forever, sweetie." Some nights, she says, "I love you too, Mommy." And other nights - like this very night - she says, "Thank you, Mommy."
Thursday, June 3, 2010
Meanwhile, I've been thinking about baby proofing as it applies to diabetes supplies. When H was born, I was already putting my tub of used needles in a high cabinet, out of reach of - well, clearly a newborn, but also a kid the age she is now (two and a half). In fact, I moved all my diabetes supplies out of reach at that point. And it turns out it was good I did, because it would actually have been hard to find the time to stop and think about that at just the right point when it needed to happen - when she was around 10 months, and started pulling up on things and being able to open drawers. That cliche, about staying one step ahead, is the not-always-achievable goal, but I've found the more I can do it, the more I can keep some sense of sanity.
Lately, even my meter and test strips have been subject to grabbing by the pudgy little hands - along with my husband's razor, toothpaste, the usual bathroom items. I've taken to putting my bathroom meter, strips, and lancets in a zipped bag (not a Ziploc baggie, but a real zippered bag) at the far back of the counter. It's still within sight and my easy reach, so I remember to test! But she's not so curious about it and is less likely to be able to open the bag before I get to her. She can unzip things - but of course I can't leave her completely unsupervised forever, anyway.
Of course, I'm used to planning a lot because of having diabetes, which helps. It's not that far to go from keeping track of how much of all those supplies you have (the strips, lancets, pump reservoirs and infusions sets, blah, blah, blah...oh yeah, and the insulin) -- to thinking about where you put them. Likewise, it's not so hard to think about packing snacks for the kid, when you're already used to carrying snacks for yourself (but it sure makes for a lot to carry!).
Sunday, May 23, 2010
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
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
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):
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)
two tubes of glucose tabs
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)
kid's book (Time for Bed; most kids' books are about getting the little blighters - er, cuties - to sleep)hand sanitizer
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. 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
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?
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
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?
Sunday, April 25, 2010
I'm mulling an unusual opportunity: long-term-care insurance. How many diabetics have that? For a short time, they're offering though my company with limited underwriting - which means far fewer health questions. I just squeak by because I don't yet officially have any complications. I grilled my eye doctor recently, because he saw a few "blots and dots." Was it retinopathy? No, he said, not yet, but he wants to keep a close watch on it. So I'd better get in on the insurance while I can, even though I'll probably be paying premiums for a long time before I need it. I am worried, though, that eventually (after I've paid premiums for years) someone might look at that record from my eye doctor and claim I have retinopathy already. (It is amazing that I don't, considering I've had diabetes for going on 25 years.)
It's scary to think about that part of my future - I'm sure I will need care at some point. But who won't, if they live long enough? When, and how much? Who knows. Maybe I'll get hit by a bus first. I've never thought much about this sort of thing, only because it seemed there was nothing I could do about it. I have only the limited life insurance I get through my work without going through a health screening - which is nice enough to have, considering. I've never bothered to try for more. I've heard of people who are not diabetic, officially, being denied because of risk factors for diabetes - like one woman I know who had gestational diabetes, and later applied and was denied, although she no longer had diabetes. I'm certain that, in another few decades, people will begin to realize our life expectancy is much better than it used to be, at least for people with type 1 diabetes. But will that ever change their view of us as just a huge liability? For insurance purposes, maybe not.
I do wonder if this offer has anything to do with the recent healthcare bill's passage, part of which apparently is going to involve government-funded long-term care insurance that doesn't exclude based on a person's current health. Whether that will work out, and how expensive it might be, is anyone's guess at this point, though.
Meanwhile, I'm trying to enjoy this break from reality, and trying not think too much about such morbid things. My sugars have been running particularly low lately - maybe it's the warmer weather - so I have that to focus on, instead, along with keeping my daughter alive as she throws herself completely into everything she does - from climbing the outside of the staircase, to climbing nearly every structure at the playground (and tottering close to the edges, mainly just to tease me), to insisting on taking her own sweater off (and getting stuck). She's always been enthusiastic, but now her activity level seems to be peaking (I hope!). Gee, maybe that's part of the reason for the lows. I feel guilty sometimes when I have to, say, make her wait another 15 minutes to go to the playground while I treat a low (or eat to avoid one). But then I think, how silly; every parent has things they have to do, that take time from their kid. I just don't like it when my diabetes is one of those things.
Thursday, April 15, 2010
My daughter has a black eye; apparently, she fell walking up the steps at daycare, because she was tired and cranky. It turns out she's been waking up at night for several nights; hubby got her settled without my even waking. (Oh, bad mommy!) She's at a wonderful family care in the provider's home, but lately we've had concerns about how one of the other kids is treating H. So the black eye made me take a closer look at how that was going. No, the other kid wasn't even there that day, but I found out some other things that were kind of unsettling. Fortunately, the other kid is about to leave for summer camp and then preschool.
Of course, just thinking through what to do about this takes time. Meanwhile, work is ever-eventful and taking a lot of my mental time. Never mind all the other things (family, friends, sick older car, troublesome younger cat, etc.). I find myself falling into my bed at night, exhausted, but staying awake because that's the only time I have even to think, without work deadlines looming, H making immediate demands, or planning dinner and H's food for the next day.
Tonight, I did what I often end up doing with my pump: a partial change-out. By the time I got H to bed (she's in a "big-girl" bed now, and I rest next to her for about 15 min. once she's settled in) and changed out my insulin (the reservoir was almost out completely) I didn't have enough time left before bed to wait the requisite hour or two before testing to be sure it's working (especially considering I often have to change it out again, because it ends up not working - and then I have to wait another hour...). So I changed out just the reservoir, putting in new insulin, and kept the old infusion set in. I'll change it out in the morning - mid-morning at the latest.
I always make a pact with myself that I'll actually change the set out the next day, and not get lazy and wait three more days. I've actually kept to that. The only time I've left an infusion set in for two cycles (about 6 days total) was a couple of months ago, when I had tried so many times to get a new infusion set in, anywhere on my body, with only painful and useless results, that I really had no choice. (In that regard, things have generally been better lately, though not always perfect).
I often find the easiest time to change out my pump is at work. I just have to use the private rest room in another wing (good thing we have that), and endure the rude stares of the folks who work there. I think to myself, when I see them, "Yes, I'm really an employee here, and yes, I have a right to use this rest room." Maybe they're just wondering who I am, but I feel self-conscious and oh-so-slightly defensive. No one's ever said anything out loud, of course. There are plenty of times when the infusion set gets clogged suddenly, and I have to change it at work, so I'm over there a lot. Hence the "sedan" bag of a purse that I carry, with extra supplies, with back-up supplies in my car.
It's a good thing it's spring, and we are getting some nice evenings for walking and playground time. I just love watching H run from her stroller to the swings when we first arrive, as if she's running to a long-lost friend. These are the kinds of things I know I'll remember when I look back years from now. And I always remember, it could be worse; knock on wood, no emergencies.
Friday, April 9, 2010
Now, I have lots of experience with MMT numbers. I've used numerous infusion sets over the 10 years I've been pumping: the quick-set, the silhouette, the sof-set, the sure-T (briefly). Each one of these has both a short and a long catheter version (who uses the short ones, besides kids, anyway?), and each has a couple of different cannula lengths (you know, the part that stays in under the skin once the needle comes out). Each combination of these has its own MMT number.
The problem is, right now I have about four prescriptions on file for the different variations of these that I've been trying, in my attempt to get something to work because my abdomen has decided to re-enact the Alamo (actually sometimes I can get a needle to go in there, but then, of a sudden, my arm decides it's had enough and won't let a needle penetrate its armor). I'm currently alternating between the silhouette 13 mm (for my abdomen) and the quickset 6 mm for my arm. Both have the 43 cm catheter. But my pharmacy also has a 23 cm catheter prescription lurking in their records, from when a nurse at my doctor's office screwed up despite my clear instructions.
So I had no idea which prescription the computerized caller was talking about. I said no, I didn't want to renew right now. That started the barrage. "Are you still using this prescription?" (Translation: We're going to cut you off if you don't really, absolutely need this.) I said yes (I am still using it). "Do you have enough of the medication right now?" (Translation: If you do, then you're being prescribed too much, and we're going to cut you off.) I hung up the phone. Interestingly, the computer didn't automatically call back. I wonder what it would have done if I'd said "maybe," or "it depends."
I'm always amazed when people talk about applying business principles to medicine, or using checklists to "improve" medicine (which doctors talk about a lot these days; e.g., Atul Gawande's recent book, "The Checklist Manifesto"). It's not that I think they're wrong entirely. I do, for example, want a surgeon to double-check that he (or she) is about to operate on the correct leg. It's just that, in my experience, the way these ideas are applied in practice, it usually gets all screwed up. Or perhaps, it gets applied in places where it just shouldn't. You'd think, at first blush, that it would be a good idea to send reminders to people about renewing their medication. If someone's taking a med for high blood pressure, it's important not to miss any doses, but it might not be the first thing on that person's mind; he or she won't keel over after one day without the drug (as I would without insulin). Maybe that person is also taking a drug for high cholesterol, and would get two reminders. But it'd still be easy to distinguish between the two.
But in my case, I really could use a secretary just to keep track of all my prescriptions. Besides the myriad infusion sets, there are the reservoirs (a separate pump supply), test strips, lancets, and the insulin itself. Never mind anything else I take. (I also need to order IV prep soon - the pads with sticky antiseptic to wipe my skin before inserting the infusion set - I don't need it for my abdomen, but I do for my arm, and no regular pharmacy carries it). And I can't imagine an automated-renewal system being about to account for all of this. Most humans, apparently, can't conceive of a person needing all of these things on a regular basis. There is no simple checklist that works for all patients, in this case.
And yet, I know I'm not at all unusual in this regard - at least among type 1 diabetics (and many type 2s as well). So when is the medical system going to get with the program, and figure out how to deal with us? Of course, the medical system is geared to handle emergencies better than chronic illnesses, so it's meant a major overhaul in thinking. But it's been a good long while in coming, hasn't it? They used to think we wouldn't be around long enough to bother (I'm being cynical, but I don't think I'm off base here). Now, it's clear that a lot of us are going to be here for a good, long while, and it only comes back to bite them if they ignore us too much. For those of us who have insurance, it now covers more than it used to (when I first tried to get the pump, it wasn't covered). They've figured out it will cost less in the long run. But it's still a constant battle.
I almost just launched into a tirade about another type of phone call I've been getting - from some nurses hired my my insurance company to ensure I'm taking my medicine and getting regular doctors' check-ups (hey, I have type 1 diabetes; if I wasn't taking my medicine, I'd be dead! They get us confused with type 2 diabetics all the time...) But I'd rather reflect, at this point, on the lovely few days off I had last week, because our daycare providers was on vacation. We finally got to take H to our local zoo - something I've been wanting to do for more than a year; she's a big Curious George fan. We went to the playground a lot, too, and generally spent a lot of time outdoors. It was a great way to kick the winter blues without having to deal with airports (don't get me started on what I have to go through there; the pump always sets the scanner off, not to mention travel with a kid...). I just loved feeling - well, normal.