I've been away from computerland for a few days - rather blissfully, I must admit. We go to our little shack in the woods (swamp-front property, as I call it) regularly when the weather warms up . It's a usually-peaceful break that feels far from our usual lives, even though it's only 20 minutes from our house (good thing, or we'd never make it there!).
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.
Sunday, April 25, 2010
Thursday, April 15, 2010
Things fall apart, sort of
I'm definitely wearing too many hats these days. Whenever something goes awry in one area of my life, it throws the other areas into chaos; I'm too tightly scheduled. And right now, no area of my life is running very smoothly.
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.
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
Calling patient number 5,465,763...
Ah, technology. This is my second attempt at writing, after a frozen-computer problem. Here goes! I was actually writing about another type of wonky technology: The automated phone call (maybe my computer knew and staged a protest). I got one of those calls today from my mail-order pharmacy - which already gets little love from me (see several previous posts about lost/late insulin orders). Today, I got a new sort of call from them. The computerized voice asked if I wanted to renew "your prescription." Well, which one, they didn't say. So I said yes to find out. The pleasantly banal voice said, "Would you like to renew your [computerized version of throat clearing] silhouette MMTx57359..."
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.
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.
Friday, April 2, 2010
Is it the genes? Not always...
Does having a kid mean you're sick all the time, or does it just seem like that? Another cold. I should be thankful that H has not had what the other kids in her daycare have had. One was hospitalized with pneumonia; H caught a cold (and so did her father and I). Another kid had strep; another cold for H (and for us). Then mono for that same kid, and just another cold for us. H has never even had an ear infection - which seems like a rite of passage for kids these days - but just one cold after another. Maybe the nursing had some effect; It'd be nice to think so. Also, I think H was so robust even from the beginning - I think she had to be, to survive being born from my diabetic self!
I've been thinking a lot about the potential risk my daughter has for type 1 diabetes. There are some knowns - like the following information from the American Diabetes Association website: For a woman with type 1, her child has a 1 in 25 chance of "getting" type 1 diabetes if the mom had the child before age 25; if the mom is older than 25, the child has a 1 in 100 chance of developing type 1 diabetes.
This clearly indicates that something other than genes are involved in a child's risk for type 1. The genes you pass to your children don't suddenly change at age 25. Yes, mutations (small changes in your DNA) become more common as a person ages; that's why pregnant women over age 35 are offered screening for Down syndrome. And it's not that age 35 is a clear cut-off, where the risk suddenly jumps; it's a somewhat arbitrary line drawn in the sand, because the risk gradually increases as the mom ages. So I imagine the same thing holds true for a child's type 1 risk as a mom's age increases (it's a gradual increase, not a sudden shift at age 25). But the risk for type 1 goes in the opposite direction from Down and most other genetic conditions. And why the change happens at all isn't clear, at least to me. It's not the same for moms and for dads, either; if you're a dad with type 1, your kid's risk is 1 in 17, no matter what your age at the child's birth. I'm going to look into this a little more. I'll let you know what I find out!
I also worry about H's risk for type 2 diabetes. I read an article recently on the New York Times site about gestational diabetes and type 2 diabetes in pregnant moms and their kids' weight that irked me. The article cites research evidence that a mom's type 2 or gestational diabetes during pregnancy can make her kids bigger throughout life - because of the extra sugar the fetus gets during gestation. According to the theory, that can make a baby crave food more - basically, it creates a higher "satiety" set point- and that can lead to more weight gain throughout life.
Even though the article wasn't about type 1 diabetes, it clearly seems to apply as well: Extra sugar during development, any way you get it, could be a problem for the kid's weight. The article mentions that experts recommend breast feeding to help set kids' weight on a lower trajectory, supposedly for the long term - score one for me. But that made me wonder whether extra sugar can pass through breast milk and make the baby gain too much weight.
So I did a little of my own research. I found one study in the medical literature that suggests that the breast feeding part is not a problem; in fact, just like for other women, breast feeding helps keep our babies smaller, too. Unfortunately, birth weight also plays a role in a kid's later weight gain; so those of us with larger-than-normal babies have that to contend with.
So yes, it's basically the same for us as for women with type 2 or gestational diabetes. I'm going to keep limiting the cookie count for H! It's a good thing she increasingly likes to eat what I eat, and that means a lot of low-fat yogurt and fruit.
I've been thinking a lot about the potential risk my daughter has for type 1 diabetes. There are some knowns - like the following information from the American Diabetes Association website: For a woman with type 1, her child has a 1 in 25 chance of "getting" type 1 diabetes if the mom had the child before age 25; if the mom is older than 25, the child has a 1 in 100 chance of developing type 1 diabetes.
This clearly indicates that something other than genes are involved in a child's risk for type 1. The genes you pass to your children don't suddenly change at age 25. Yes, mutations (small changes in your DNA) become more common as a person ages; that's why pregnant women over age 35 are offered screening for Down syndrome. And it's not that age 35 is a clear cut-off, where the risk suddenly jumps; it's a somewhat arbitrary line drawn in the sand, because the risk gradually increases as the mom ages. So I imagine the same thing holds true for a child's type 1 risk as a mom's age increases (it's a gradual increase, not a sudden shift at age 25). But the risk for type 1 goes in the opposite direction from Down and most other genetic conditions. And why the change happens at all isn't clear, at least to me. It's not the same for moms and for dads, either; if you're a dad with type 1, your kid's risk is 1 in 17, no matter what your age at the child's birth. I'm going to look into this a little more. I'll let you know what I find out!
I also worry about H's risk for type 2 diabetes. I read an article recently on the New York Times site about gestational diabetes and type 2 diabetes in pregnant moms and their kids' weight that irked me. The article cites research evidence that a mom's type 2 or gestational diabetes during pregnancy can make her kids bigger throughout life - because of the extra sugar the fetus gets during gestation. According to the theory, that can make a baby crave food more - basically, it creates a higher "satiety" set point- and that can lead to more weight gain throughout life.
Even though the article wasn't about type 1 diabetes, it clearly seems to apply as well: Extra sugar during development, any way you get it, could be a problem for the kid's weight. The article mentions that experts recommend breast feeding to help set kids' weight on a lower trajectory, supposedly for the long term - score one for me. But that made me wonder whether extra sugar can pass through breast milk and make the baby gain too much weight.
So I did a little of my own research. I found one study in the medical literature that suggests that the breast feeding part is not a problem; in fact, just like for other women, breast feeding helps keep our babies smaller, too. Unfortunately, birth weight also plays a role in a kid's later weight gain; so those of us with larger-than-normal babies have that to contend with.
So yes, it's basically the same for us as for women with type 2 or gestational diabetes. I'm going to keep limiting the cookie count for H! It's a good thing she increasingly likes to eat what I eat, and that means a lot of low-fat yogurt and fruit.
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