Tuesday, September 29, 2009
So, I’m slowly (it seems) getting back on track. Which leads me to thinking about goals. For doctors, the A1c (hemoglobin A1c) is the goal, because that’s what they can most easily measure. Generally, the goal is below 7.0 for most people with type 1, according to the ADA (higher if you have hypoglycemia unawareness or other concerns). As with most things health-wise, there’s a cost/benefit ratio, in that the lower you go, using insulin, the more likely you are to have potentially life-threatening lows. But you want to keep it low enough to avoid long-term complications. One place to find their discussion of this goal: http://www.diabetes.org/for-media/pr-ada-statement-related-to-accord-trail-announcement-020608.jsp. It’s about a clinical trial comparing patients who had A1cs between 7 and 7.9, and those with A1cs below 6. It turned out that those below 6 had an increased risk for death compared to those with the higher levels, and it had nothing to do with having more hypoglycemia (they’re not sure what it was related to). But apparently, the study participants were all middle-aged and older and had other cardiovascular risk factors, so the findings might not apply to, well, me, or folks like me (just as most of the studies of statins in people with diabetes are in middle-aged and older adults - but that’s another diatribe!).
The problem with the general goal is that it leaves both patients and doctors without much guidance. It also ignores the fact that technology - insulin pumps and continuous glucose monitors - can help us aim lower with fewer risks. But how do doctors judge how to advise their patients? My own, for example, says that around 6.5 is “fine.” And that’s where I’ve been for quite a while. But my experience with pregnancy -- when the goal was lower, around 6.0 or even lower, if possible -- made me realize that I can aim lower. I was at 5.8 for much of the pregnancy (it went up to around 6.3 right at the end). Now, all the experts say that I was just extra-motivated, and that might have played a small part. But it was also the extra help I had, mostly from my excellent pregnancy endocrinologist at the Joslin, Dr. Florence Brown (full disclosure: She wrote the foreword to the book I mentioned before, When You’re a Parent with Diabetes). She helped me figure out how to adjust the pump settings based on my readings, in a way that I’d never had before. Basically, the constant changes of pregnancy provided an intensive training opportunity, and she deftly helped me sail that high sea.
The biggest piece of the puzzle came from using a continuous glucose monitor. The monitor detected lows (with some technical glitches, in a now-outdated version), which was crucial because I had developed temporary hypoglycemia unawareness. But most important, it showed me what was in the “black box” of the night - what my blood sugar was doing while I slept. Traditionally, no one does much examination of that period, yet it’s always been a problem for me, and I bet it is for a lot of people, just because it’s a long stretch of time that we never examine. Before I went on the pump (around 2000), I would go low overnight a couple of times a week. I would always wake up, but maybe that was worse, because I’d eat and then end up with a high in the morning. Once I went on the pump, I no longer had lows overnight, but I still had trouble with highs in the morning, though not quite as high.
Well, it turns out that my blood sugar was doing a roller-coaster overnight: up, then down around 3 am, then up again toward dawn (the well-known dawn phenomenon). Once I had used the continuous monitor a couple of nights, I figured that out, and it was a pretty consistent pattern. I made some pump-setting adjustments, and voila! I have had great morning readings most mornings since, even after pregnancy. I highly recommend analyzing the overnight period - and not just with one or two checks. I did that years ago -- around 3 am, as was recommended at the time -- and that only showed that it was normal, which gave me no clue about the swings.
Which brings me back to the A1c goal. I think there’s a limitation to the A1c, in that it doesn’t distinguish between blood sugars that are always within the ideal range and those that swing around the ideal. So if I go to 200 one time, but then go down to 40 a couple other times, the A1c will read the same as if I’d been at 93 all three times (just to give a hokey example). It’s the many-times-daily checks (or, better yet, the continuous checks) that tell us what’s really going on. My doctors would always compliment me on my control (when my A1cs were considered good, which was most of the time, though before the pump they were never much below 8), but I would always say, “Well, what about the highs in the morning?” (or the lows at night). Various doctors and others tried to help - for example, suggesting eating Night Bites before bed. These are snack bars containing just the right amount of corn starch, supposedly, to keep blood sugar steady for a long period. It might have helped a little, but it didn’t solve the problem, because the swings were (unbeknownst to me) so extreme. It was figuring out how to get on a more even keel overall that allowed me to lower my A1c.
Now, I have the chance to use a continuous glucose monitor again, this time one that synchs with my pump, and supposedly is much more accurate than the one I used before. So we’ll see if I can aim a little lower. My only concern is having more hypos, especially when I have a daughter to take care of. But the continuous monitor should help detect those. I also have to see if I can keep my daughter from kicking off the probe - I don’t know if that’s the proper technical term; the metal filament that goes into the abdomen, and the part attached to it that sits on top of the abdominal skin and transmits the readings wirelessly to the monitor. Unlike the pump infusions sites, the monitor probe (thingy) has to go on the abdomen. I’ll also have to see if I can find the time to analyze the readings and adjust the pump settings accordingly. I haven’t even found the time to order the device yet! (What was that bit about motivation?...)
Wednesday, September 23, 2009
“I like some.” Usually, it’s not a problem when my daughter says that. She means she’d like some of what I’m eating. That could be a challenge, because I have to “plug in” exactly the right amount of insulin (i.e., program my pump to deliver the insulin) to cover the carbohydrates I’m about to eat (It works well when my husband and I are sharing a chocolate dessert - sorry, dear, I already plugged it in, so I just have to eat it all!). I work around it by fudging a little - taking a little less insulin than I calculate I'd need for the food. Usually, it works out because, even if I end up eating more than I’d expected, I then have to chase my daughter around the house, so I use up the extra food. If she ends up eating more than I intended, I have to go scrounge something else (usually just a little juice). But it’s not quite as simple as plugging in the numbers. It hardly every is that simple; there are always strange factors that throw things off - like the soup having less carb than it says on the can (“servings per can - about 2” leaves a lot of wiggle room! It’s really closer to one and a little bit in most cases), or a sudden upset stomach, or...But adding another factor doesn't make it any easier.
One potentially useful tip I read in a book, for treating a low: Have some warm juice boxes around in a flavor your kid does’t like. This might not work if, like my daughter, your kid “likes” everything you happen to be eating or drinking. She hasn’t yet developed a lot of real dislikes (except for food that’s unfamiliar, and if I’m eating it, it doesn’t count as unfamiliar, I guess). But once she does develop definite dislikes, maybe this tip will work out. I usually have enough juice on hand that we can both have some, though. And I carry glucose tablets when I’m out - so far, she hasn’t shown any interest in those.
I do have to say that the book with this idea is fabulous in general. In fact, it’s the only book I've seen about being a parent with type 1 diabetes (apologies to any other authors whose work I’ve missed, and I’d be interested to know about it!). The book is “When You’re a Parent with Diabetes,” by Kathryn Gregorio Palmer. Actually, it’s meant to apply somewhat to type 2 as well, but the author herself has type 1, and there’s definitely helpful info there. It’s not a big book, though, and it doesn’t cover everything - especially about pregnancy (there’s one chapter). At some point, I’ll go back and recount what I recall of my own pregnancy experiences - what I encountered, and how I handled things (or didn’t!), what info I found helpful, and what I found decidedly unhelpful (like the general advice to give up artificial sweetener!).
These days, though, I am generally running on the low side rather than the high side, for the above reason, as well as that I’m too busy chasing my daughter, and when I’m not, doing other things, to eat too much. It’s a good thing I don’t have hypoglycemia unawareness, though it does go lower before I feel it than it did before pregnancy, perhaps because my blood sugars generally run lower, so they don’t have to drop as far to go too low. That, by the way, seems to be just my own theory; the only evidence on this that I’ve heard of is that going low repeatedly can cause hypoglycemia unawareness during subsequent episodes. (During pregnancy, I did have unawareness - that’s another story!). But in my experience, it’s the drop that I feel - even if I am going from very high to just normal, it might feel like it's going low.
If anything, I get too many symptoms for my own good, because it’s hard not to overeat (and make blood sugar rebound high) when you’re shaking, sweating, and starving. Rebound seems to be a problem sometimes even when I don’t overeat, so it’s better to avoid the lows if I can, but good luck doing that!
Sunday, September 20, 2009
All I can say is, thank God for the Grands: Grandparents, grand aunts, honorary grand aunts. Without them, we might not have survived hosting our first kids' birthday party. As it is, I'm exhausted (shoe-in-the-fridge exhausted).
Partly, it was the worry over whether any kids would get hurt (only my own daughter almost fell off the high slide – mother of the year award, here I come! – and one mom got hurt; sorry!), or just get bored (don’t think so, thanks to the Grands). But also, I was just running around. We moms often don’t even realize how much we’re doing (we just go into “totally crazed” mode), but I have instant feedback about that, because of my insulin pump. When I clean house, if I forget to eat first or cut back on the insulin delivery temporarily, I go low in about 15 minutes. During the party, I was eating and drinking juice constantly, yet I didn’t need any of the extra insulin I usually take for food. How much exercise is that? About the equivalent of biking the whole time. No wonder I wanted spaghetti for dinner tonight.
It was worth it, though. Isn’t everything we do for our kids worth it? (Try not to think what will happen in the teenage years.) H was thrilled; how could she not be, getting to eat four big cupcakes? And no, she didn’t get sick from it – she makes up for all that I can’t eat! I’m just thrilled to give my daughter such a normal experience. And as my husband said, I’m not like the person he married: I have way more energy, since I stopped having migraines. (He’s feeling the pressure now!) Compared to that, even this level of exhaustion feels good.
I read a great blog post recently, by Dan Barry in the New York Times (http://www.nytimes.com/2009/09/01/health/01case.html). It’s essentially about how having a serious illness give you perspective (chemo brain of a different kind, as he frames it). It makes you not sweat the small stuff – some of the time. So sure, I worried and fretted and rushed around. But at the same time, I was watching the party unfold and notching the mental stick: Yup, got to do the classic party. (Will we get to the moonwalker and face paint stage? Oh, I hope not!) I guess we all do that with our kids, though. We want them to have the best of what we remember from our childhood, and more. But I’m totally surprised to be able to.
Here's another surprise: How a negative can turn into a positive. I changed out my pump infusion set this evening and my blood sugar started to go low (as it often does when I change out the set). I had to hand my daughter over my hubby for her bedtime story and go get some juice. I've been meaning to get him back into the story rotation - he fell out of it for a while, such that she hasn't wanted him to do it lately (kids love their routines). After a short protest, she settled in, and I got to watch them from the doorway, him asking her the book's questions, her smiling shyly when she remembered the asnwers. I jealously guard my time with her, and was starting to resent the blood sugar interrupting our routine (poor me and this dread disease, and all that...). But that scene will be prominent in the memory bank.
Tuesday, September 15, 2009
First I tried the thighs: too uncomfortable (too much muscle, though I'm not all that fit), and still too many blood vessels. Then the "hip" (really, a bit further back than that!) - okay, but hard to reach, hard to get the canula to stay in, and a literal pain in the butt. Then the back of my upper arm: surprise! That worked and actually wasn't too uncomfortable or too in the way, ven though I had tubing running down my sleeve to where I keep the pump, usually in my pants pocket.
After pregnancy, though, I eventually went back to the abdomen. It's just easier, less painful (really!), and more reliable. But now, every time I hold my squirming two-year-old, I can feel the infusion set pushing in, and it often just stops working - gets clogged with blood or, I guess, kinked. I may well also have scar tissue built up over the years of injections and then the pump. I rotate all around the abdomen, but it still seems like certain sites are useless, for the first time (I've used the pump for about 10 years). Perhaps pregnancy, or the C-section, did something to the tissue there.
So now, I await new infusion sets to go in my arm again (it takes several weeks to get them), and change out the current infusion sets two or three times a day, and try to keep my blood sugar from going hopelessly out of control (what's the definition of hopelessly out of control? Hard to say, I'm probably already there). I'm just not sure the arm will be enough out of the way of my daughter's sweet, grabbing hugs. But I'm not about to hold her at arm's length, so I'll have to find a technical solution.
Would I ever go back to injections, though? I hope never to have to. Even with all these problems, I have better control overall than I ever did with shots, and I can push a meal later if I want (up to a point), where I couldn't with injections. Sometimes, being able to wait until I put the baby (big girl!) to bed is the only way to get a proper dinner, where I can program my insulin and then eat all the food, instead of jumping up and down and keeping track of her meal. I wouldn't go back to having lows overnight several times a week, either.
Sunday, September 13, 2009
Last night, I was feeling extra groggy and tested by blood sugar: 69 mg/dL (very marginally low). I knew it was dropping, though, so I ate some glucose tablets, and a granola bar (what I had on hand, and I was ravenous). I suppose the 6 grams of fat in the granola bar slowed things down a little, but it shouldn't have mattered very much. Yet 15 minutes later, my blood sugar was 48. I was feeling like I might pass out - not a good thing, as I was home alone, with my daughter asleep -- so I disconnected my insulin pump (a nice thing to be able to do), ate 6 more glucose tablets and a banana, and about a half hour later started to feel marginally better. By the time I went to bed, my blood sugar was normal. But I knew I wasn't out of the woods: I'd eaten more than 100 grams of sugar, so I was bound to go high eventually. I took a little insulin, but I knew if I took too much I'd drop again. The only way to keep from going high would have been to stay up half the night, taking a little insulin at a time. Or maybe I could have programmed my pump to give me a little insulin over a couple of hours. But was my brain up to calculating how much I should take, for how long? And as far as I know, there isn't a rule for doing that - you're supposed to follow the first rule, silly! (If you want to know what happened: Yes, my blood sugar was quite high in the morning, but I had a pretty good night's sleep. I just couldn't eat breakfast for a while, but good thing it was Sunday.)
How often do you end up off a cliff because you missed seeing a stop sign? (If you live in coastal California, please don't answer that question.) It happens all the time with diabetes; one wrong calculation, made when you're least able to make calculations, and you're suddenly completely off track, and you have to scramble up a cliff to get back. We have a lot of rules and calculations to follow these days, especially those of us who do carb counting and use insulin pumps. But for every rule, there are seemingly infinite exceptions, and no signposts to lead the way back.
Still, it's better than the old days: 20 years ago, all we had was lovely urine strips (stick it under the urine stream and watch the pretty colors) to tell us what our blood sugar was several hours ago, or blood test strips that required a series of precisely timed wipes with a messy cotton ball, with dubious results. It would take me days to get back on track, or what I thought might be on track, rather than half a day. I feel fortunate to live in a time when I can expect not to go blind from my illness, if I take the right steps. But those steps end up taking an awful lot of my brain power and anxiety.
Which leads me to try to explain why I've called this blog "One Sweet Day." It refers to a few things: The fact that I have to take things one sweet (diabetic) day at a time; and also the idea that in some unknown, probably impossible future, this disease will be just a memory. I doubt it will be in my lifetime (despite what everyone told me in the hospital when I was first diagnosed, at age 13, in the up-beat 80s). But maybe it will be in my daughter's - though I don't even dare think what I would do if she develops the disease. There's a lot of good research out there - not only beta-cell transplantation (the Edmonton protocol), but work on using the thymus to retrain the immune system to stop attacking the pancreas. So my hope is that that research will be supported and lead to something. No one should ever think that insulin pumps are a cure. They're keeping us alive and without complications for far longer than injections (although I know plenty of people do really well on injections; I myself couldn't). And they allow us more flexibility in what and when we eat. But they also create new hassles, and they're far from perfect (more on that in future postings!).
One Sweet Day also refers to my daughter's birthday (the actual day of her birth). For all that I went through (yes, that's another post as well), it was the most miraculous day of my life. I'm thankful, every day, that she was born. I try not to let that make me an overprotective mother; I'm sure it does somewhat, but I might be one anyway.
Sleep is calling, and a work day lurks behind it, so so long for now.
Friday, September 11, 2009
My story, in brief: I have had type 1 diabetes since age 13. Maybe that got me interested in medicine, because I loved biology - but also writing - and so I studied both, and still do. I'm a medical writer an editor (full-time). I'm also the mom of a great toddler, whom I had to jump through hoops to get. Not only have I had diabetes, but I also had severe migraines for 14 years, before getting pregnant. I'd rather not focus on that issue (mostly because I don't get them anymore, and that's a living hell I'd rather forget), but I'm sure it will come up from time to time. It made getting pregnant even more challenging, because the migraines threw my blood sugar out of wack, but the meds to treat the migraines were a huge threat to having a normal child.
Somehow, I made it through that - and into a pregnancy with diabetes, where I had fantastic medical care, but found virtually no written information about my situation. It's as if the world still considers diabetic parenthood to be so risky and fraught that it's better not to talk about it. Yet I know there are lots of us who take great care of ourselves, and just need better information on how to do it.
I'm hoping I can combine my own daily story with information about diabetes and motherhood/parenthood. I love to explore the reasons for things - like what the chances are that my daughter will get diabetes herself. I'll try to gather really reliable information (that's what I do for a living), but also put it into context. I apologize in advance if I rant sometimes (probably often!). And I'll try to post regularly, despite the job and the two-year-old, and - oh yeah - the diabetes.