Sunday, September 18, 2016

Week 29: Anxiety and Rest

Pregnancy has, blissfully, continued to be boring these last two weeks. Two weeks ago saw me at the office of the maternal-fetal specialist with nothing to report except a perfect health score for my baby. He's got a name now, a couple great godparents, a baptism date, a place to sleep, and a borrowed infant bouncy seat to rest in provided he'll let me put him down at all during the first few months and his 2-year-old brother doesn't show his affection with excessively strong gestures. (Clothes to wear will be forthcoming as soon as I can find the box in the basement).

But the stakes are so high with pregnancy that it can often feel like a constant test or a disaster that is just about to happen. By this point in pregnancy (30 weeks), I know women who have miscarried, mothers who have given birth to children with severe defects, babies that have suffered a fight for their lives because they were born too soon, women who have given birth to children they already know have died, children that have died during labor, children that have died shortly after being born. These are not simply stories that I have heard about women I do not know personally, and they are not stories about women who are otherwise at risk for any complication with their pregnancies. They are healthy women, and they are women that I know: friends, neighbors, acquaintances, family members. These stories are everywhere you turn, at least if your friends have as many children as mine do and you have the habit of asking (politely) probing questions about your friend's experiences with motherhood.

So the more time I've spent listening to stories about pregnancy and birth, the more sober I become about the whole process. The rewards are very great, but so are the risks. And the fear associated with these risks is something that has not left my side for long during this particular pregnancy. My pregnancy has been the picture of (physical) health since the very beginning. It is has not varied dramatically from any one of my other pregnancies, at least as far as pregnancies can be measured through blood pressure numbers, A1Cs, weight gained, baby's growth percentiles, and so forth. Each one of my other pregnancies turned out well, and I have no concrete reason to believe that this one will not likewise turn out well.

If you've read my posts, you'll notice that I have tended to blame my doctors for the extra anxieties attached to my pregnancies. While I've written a great deal about that, I still don't think that quite tells the whole story. Every doctor has to be on the lookout for complications; that's just a hazard of the job. Perhaps I could blame whatever existing anxiety and depression I had prior to the pregnancy for my present anxieties. But I also don't think that tells the whole story, since the anxieties I had prior to pregnancy related to my competency as a mother, not the terrible things which happen to women and their children that cannot be attributed to anyone's competency or lack thereof. I suppose it could be thought of as a premonition of some terrible way in which this pregnancy will end. But I have not received any special revelation about this baby and this pregnancy indicating an unfortunate outcome here, unlike St. Joan of Arc (whose biography is well worth reading. See! I'm so relaxed I even have time to cultivate my interior life by reading!).

For now, it simply remains a curious fact of this pregnancy that I am exceedingly aware of everything that could go wrong...and still, nothing has. Nothing! Baby has a name, some great godparents, a perfectly average size, all major organs in their proper places, brothers that are very excited about his arrival, a tiny little basket lying on the floor next to my bed, and some clothes somewhere in this house which will be pulled out by the time he is.

There is, at least, some rest from the anxiety to be found in those facts.

Wednesday, September 7, 2016

The Power of Experience

The more pregnancies I go through, the more I pity Type I diabetic women going through their first. By trying to describe my experiences, I want more than anything to help other Type I diabetic women who have never done it. I want to help them avoid some of the worst and most unnecessary anxieties that might be imposed upon them by their doctors, by their medical history, by the world around us which finds children somewhat detestable at times, and by the very real dangers that accompany this journey of motherhood we find ourselves on.

The other day, I realized that, towards this goal of reducing anxiety for Type I diabetics, I now have something that probably most obstetricians might not even have. I have experience, from start to finish, with four whole Type I diabetic pregnancies. I was going to do some statistical analysis, but I think I'd just screw it up. So I'll simply note that there are not that many Type I diabetics in the U.S., and an even smaller proportion of them are women of childbearing age. Not very many of those women will have more than one or two children, at least in part because doctors have a way of making pregnancy so frightening and unpleasant for women with high-risk conditions like Type I diabetes. That means that there just aren't many Type I diabetic pregnancies for obstetricians to observe.

Maternal-fetal specialists probably have more experience, because they only see women with high-risk conditions. But they also don't follow pregnancy all the way through delivery. They never really get the whole picture. I have never returned to a MFM after delivery to tell them how awesome everything turned out. They have no idea that all the fretting and anxiety about all the things which might possibly go wrong never came to fruition, and that the upshot was an awesome and normal little kid.

So if I have any power at all, during these days when my physical strength is waning, it's the power of my experience. I wish I could give this power to every Type I diabetic who has ever contacted me, either on the blog or over e-mail. I wish I could tell you that everything will turn out fine, as it has for me, after every single one of my anxiety-filled pregnancies. I wish I could tell doctors a few simple ways they could avoid freaking out and over-burdening their Type I diabetic moms. I wish I could give you a healthy, positive pregnancy and delivery experience with a few strokes on the keyboard. 

I know that some things cannot be given except by living them, and I know that not everything turns out fine every time, and I will certainly not be there to help you in the delivery room when you need to make important decisions for yourselves and your babies. But if there is any question you have about diabetes and pregnancy, please feel free to ask! I don't have much, but I do have the power of my experience, and perhaps something I've learned may help you, too.

Sunday, September 4, 2016

Week 27: Rules, Rules, Rules

So on Wednesday, I was frustrated by all the rules that I've been given by my OBs and endocrinologists over the years to (apparently) have a successful and healthy pregnancy. I've given a bit more thought to this question over the last few days, as I'm not one to simply reject rules just because I'm struggling to implement them.

Last night, I thought I was frustrated because my children were running into the kitchen, not cleaning up the house like they'd been asked and like we do at the end of everyday, and occasionally throwing things in my vicinity while I was trying to heat something up on the stove. (You know, like most days). But what shocked me was when my husband came into the kitchen, asked me what he could do to help get dinner prepared, and I simply exploded:

"I just can't do it all! I can't get my postprandials below 130, hit a fasting 60-90 target, walk for 30 minutes every day, and keep my weight gain between 25 and 35 pounds. She just needs to pick two! I can't do all of them!"

It turns out that having stuff thrown at me while I'm trying to sear meat at a high heat in a pan on the stove top bothers me much less than it used to.

So anyway, after identifying the real source of the stress in my life these days, I realized something. The problem with these rules is the complicated relationships between them.

For example, following walks, I tend to get unpredictable lows that last for long periods of the day. I can at least guess that they will probably last for a little while after the walk, but I don't know ahead of time exactly how long they will last, nor do I know how deep they will go. Setting a temporary basal, under these conditions, is total guesswork that's usually wrong. That means the most reliable solution is to keep eating small amounts all day long to keep my blood sugar up. But in that case, I'm just making up for calories burned by consuming those same calories at a later time in the day. If these walks are for the sake of my weight gain, it's a total fail. And it's occasionally setting me at low blood sugar levels that are rather debilitating for hours at a time.

Following walks, I also get unpredictable spikes in my blood sugar. They sometimes happen at lunch, sometimes happen at dinner, and sometimes happen at night. If the spike happens over night, then my fasting blood sugar will be off in the morning. If the spike happens between meal times, I have a hard time remembering what was a meal spike and what was a random glycolysis spike between meals when I look back over my graphs. And if I'm hanging out at a low blood sugar level for hours, and then I finally get sick of it and eat just a little more than the tiny bit that I normally eat to correct, then I can't tell if it's a meal spike, a random glycolysis spike between meals, or a rebound/low blood sugar correction error.

The final kicker is that none of these things happen in anything like what we can call a regular pattern. Believe me. I've been watching for it. Have I had three days these last two weeks in which a consistent pattern has emerged? No. Several different patterns have emerged (spikes between lunch and dinner, spikes after dinner, spikes at 1am, spikes at 4a, lows at 4a, lows at 1a, lows before dinner), but nothing that I can reliably change my insulin rates to accommodate. Because I just can't make a pattern to accommodate both lows and spikes at 1a, both lows and spikes before dinner.

Whether these walks my OB has prescribed are meant to control for weight gain or blood sugars, it's accomplishing neither.

I should probably be reassured by the fact that there is absolutely nothing wrong with me or this baby except that I am so absurdly anxious about these rules. And I've also had four healthy babies already. I still spend a good 12-18 out of 24 hours at or below fasting level, between the time spent with low blood sugars and those times when the spikes are not happening. The highs are never above 230 mg/dL, rarely above 200. I can only hope my A1C is staying where it's supposed to be. But the principle remains: the rules, as they've been communicated to me, are simply not working. They're stressing me out, and they don't work in concert with one another. Maybe it's more nuance that I need. How many postprandials below 130 mg/dL are expected in a week? What's an acceptable range of error? Once per day? Three times per week? How many mornings during a two week period do I have to wake up between 60 and 90 mg/dL to affirmatively answer the question, "are your fasting blood sugars between 60 and 90 mg/dL?" Is 10 out of 14 enough? Why are the doctors still wondering whether I'm handling this properly? And why am I still second-guessing the judgments that have gotten me successfully through four other pregnancies?

Wednesday, August 31, 2016

The Rules Are Not Working

Now that I've had a CGM long enough to observe my blood sugar patterns following certain kinds of meals and certain kinds of exercise or activity levels, I've learned that many of the rules that have been given to me over the years about where my blood sugar should be at what times simply do not work. Or at least, they don't work in an absolute way. Or there are so many exceptions to them that it's not really a rule any more. Or I can't achieve them with the tools currently placed at my disposal. Or something. This is especially true during pregnancy.

The "rules" I'm referring to are threefold:

The first is the rule about waking up with my blood sugar at 60-90. My "fasting" glucose. I put "fasting" in quotes because do you have any idea how often I have to eat during the night to bring my blood sugar up from a low? I have tried to explain to doctors that sometimes my "fasting" glucose is more of a reflection of the blood sugar drama of the night before, and may have as much to do with a correction bolus given at 3:00 in the morning following a midnight snack as it does with the accuracy of my basal rates. And do they know how weird my basal rates get during the night, in an attempt to prevent the midnight low, and how hard it is to get that right in the first place? Furthermore, I spend a good percentage of daytime hours at or below fasting level when I'm pregnant, because I limit my carbohydrate intake to avoid blood sugar swings and because I tend to err on the side of low rather than high. That means that if I'm at 130 mg/dL all night because I can't otherwise figure out how to keep my blood sugar from dipping too low while I'm asleep, baby still gets his fasting blood sugar time and I get a good night's sleep. I assume that the 60-90 mg/dL number comes from non-diabetic women, which I am not, and which I have not been for 23 years. So I am henceforth excusing myself from following this rule.

The second is the rule about postprandial targets (one hour after a meal aim for 130 mg/dL, two hours after a meal aim for 120 mg/dL). During my first pregnancy, I tested my blood sugar 12 times a day in order to monitor all these values, and by the middle of the second trimester, I had determined that a one-hour postprandial of 130 mg/dL was impossible unless I wanted to be at 75 mg/dL and falling two hours later. Which I didn't want to be. So the way I left it is that I would shoot for below 130 two hours later, and I would just eat less frequently and fewer carbohydrates to avoid the BG spikes altogether. However, this has still left me with so many low blood sugars that my endocrinologist didn't like to let me manage my own BGs during pregnancy, I could have drowned in a bathtub when I decided to clean the remains of my thrown up dinner off my skin while my blood sugar was somewhere below 30 mg/dL, and I one time drew blood scratching my husband's hand when he tried to force-feed me Gatorade during a nighttime low BG episode. So I haven't worked out what my new 2-hour postprandial target will be, but I have a feeling it's going to have a lot more to do with where my BG started when I began the meal and how the curve on my sensor screen looks or should look. Otherwise these numbers - which are also probably based on blood sugars for non-diabetic women, a fact which has not been true about me for 23 years - haunt my imagination every time I go to adjust my basal rates or bolus ratios. I've also sometimes wondered whether synthetic insulin works differently enough in a diabetic's body that taking postprandial targets for women who produce insulin naturally simply places an unfair burden on a diabetic using the synthetic stuff.

The third rule is about bolus insulin/basal insulin percentages: that you're supposed to be giving 50% of your insulin by basal rate and 50% by bolus. I mess with my basal rates too often: during and following hard exercise, following a big meal, during sedentary periods on Sundays and travel days and sick days and all the rest. I use a combination of temporary basals and square correction boluses for this, and the numbers are just bound to work out incorrectly when I look at the percentages on my pump. I suppose I could use more temporary basals instead of square correction boluses to fix this problem and increase the percentage of basal rate insulin that it appears I am delivering, but somehow it feels easier to say I need to add 2-3 units over the next 2 hours than to calculate percentages to increase my basal rate (what is it again?). So I am going to do my best to not worry about this one anymore, either.

The only real rule I follow is that I'd like my A1C to be below 7.0 apart from pregnancy, and below 6.5 during it. I think that's manageable, and it leaves me a lot more room to experiment and try things out for a few months, rather than a few days. I'm not sure I should be held to non-pregnancy blood sugar rules on a day-to-day basis, as long as my A1C shows that I'm averaging out somewhere close to normal. Somehow I've been able to have 4 healthy babies and I haven't ever been able to follow the rules precisely. So I'm at least doing enough right to make it work out, right?

But I am looking for a new set of rules. Have you found any blood sugar management rules that just don't work for you? Managing my blood sugars without rules is a bit of a trial. Suggestions you've heard from your care providers, or that you've discovered on your own by tweaking your pump settings and observing CGM trends, are welcome!