Sunday, December 27, 2009

Too many cookies? (but not for me)

Blogging while having low blood sugar - is it like blogging while drunk? I hope not. Actually, I'm offended by such comparisons - they're dangerous, because when people think a diabetic is just acting drunk, they ignore what could be a life-threatening condition.

But enough of my soap box. Really, I'm just trying to regain normalcy (note I don't say normality) with my blood sugars. No, I did not particularly overindulge over the holidays; it's just the continuing saga of my pump sites not working right. I've gone back to using my abdomen, and really only one side of the abdomen, after a few frustrating weeks of other sites. We'll see how long this lasts. I'll be seeing a pump specialist toward the end of January, to see if she has any ideas about how to better use sites other than my abdomen, or how I might get the infusion sets to go into my abdomen better.

(Here's a bit of commentary particularly for insulin pump users: There are a lot of tricks to getting the needle in at just the right angle, and I think I've been using all those tricks, but you never know what new ideas have come out. The pump manufacturer was really helpful during my pregnancy when I had similar problems, but I reached the end of even their extensive knowledge. The one thing I've just thought of recently, that they didn't suggest, was that, when the pump seems to be in a site where it is delivering insulin, but only very slowly, I can keep it in but directly inject insulin for meals -- "bolus" in pump terms -- using a syringe, i.e., the old-fashioned way. This could be particularly useful when the pump is in the "hip," where delivery tends to be slow. My arm, I've sort of given up on - even when I could get the infusion set in right, delivery would either be too fast or stop altogether because of bleeding, perhaps because of my toddler grabbing my arms, or just from my lying on it during sleep. I just couldn't keep that up during holiday traveling.)

Meanwhile, my daughter has done really well with Christmas - no tantrums, a decent sleep schedule, and not too terrible a diet (okay, I'm not counting how many cookies she ate, but at least she ate regular food, too!). Coming back home has been a bit more challenging, of course - coming back to earth, so to speak. She slept until 8 am (unheard of normally), then had a 3 hour nap in the afternoon (1 to 1.5 hours is more typical). So she was up still and hadn't eaten much since lunch when we at dinner around 8:00, and I sat her down to eat with us. Of course, my blood sugar was high, after running low-normal all day (such swings are the norm lately), so my idea of the family dinner was, once again, interrupted while I injected (and although I used what the pump calculated I should have, I am now running low because changing out the infusion set when I've been running high often causes this sort of reversal). As it happened, my daughter didn't want to eat much anyway - she often doesn't eat much at dinner, especially if it gets delayed until after 7 pm, though she usually begs for a cookie or another "special treat" (she doesn't understand that "special treat" means you don't get to have it at every meal!).

I'm pleased that I managed to give her just one cookie today, if only to wean her from the idea that she can have cookies all day, every day (I let her wear her pjs all day instead). I don't know what's normal in that regard - that is, how many sweets a two-year-old can eat. I know that, like us, a lot of people don't give their toddlers dessert on a regular basis. But what about on special occasions - how far can one go with the cookies? How about candy (as long as it's not hard candy)? As a diabetic, I have no idea how many sweets a "normal" kid can safely eat. One or two standard cookies at once, okay. How about three or four? And how about over the course of a day? She doesn't get sick even when I think she's surely had too much - so is that okay?

Wednesday, December 16, 2009

Holiday Hurry - Help!

This time of year is like the "burn" phase of a workout. "Okay, you can do it! Just one more rep...and one more!..and one more once..." So, rather than excuse myself for not blogging in a while, I'm going to pat myself on the figurative back (my real back is too sore) that I'm still breathing.
In addition to the end-of-the-year work stuff, and the holiday stuff (and yes, I do all the traditional present-buying and card writing and a little baking), here is my recent to-do list related to diabetes:

1. Place mail-order insulin order - first, ask doctor for new prescription; then get message from pharmacy saying "my order is in process, there's nothing I need to do" (a.k.a., "there's nothing you can do about it!); then wonder which order they mean of the three prescriptions I've ordered recently; then tap my finger on my desk wondering when the "overnight" insulin will arrive, and if, like last time, it will arrive a) overnight and freeze; b) arrive while I'm away for Christmas; b) not arrive at all. At least insulin is available without a prescription at regular pharmacies (for a price), if need be.

2. Figure out where, besides my abdomen, my insulin pump will now deliver insulin, because after 15 years of injections all over my body, but more in my abdomen toward the end, and 10 years of pumping mostly into my abdomen (pregnancy notwithstanding), I've suddenly hit a wall, where I absolutely could not find a place in my abdomen where the needle would go in smoothly (or at all), without excruciating pain, and without stopping delivery in the dramatic, incessantly beeping way that pumps have of getting attention.

3. Realize that the new infusion sets I ordered a couple of months ago, when I started having trouble with my abdomen, have the wrong length catheter - 23 inches instead of 43. Get caught in a "it's not my fault" loop between my pharmacy (which is connected with my insurance) and my doctor's office, with the result that I'm out $90 and have to wait 2 to 3 weeks to get the correct infusion sets - i.e., right during Christmas. Now, you might think, it couldn't possibly be that bad - can't I get these any sooner, say, at a local pharmacy? Nope. I went through this during pregnancy, when I had to try my legs, butt, arms, etc. and needed different types of infusion sets for each site. Regular pharmacies don't carry pump supplies at all. Even the manufacturer can't send supplies any sooner than two weeks. I got four sets directly from my doctor; the nurse said "this will last 12 days, right? I said all going well; but it hardly ever goes well! (see below). Besides, 12 days is not two weeks, even at a normal time of year.

4. Wonder how I might fare if I have to go back to injections over the Christmas week, without any access to my doctor for advice (I'd have access to a doctor, just not my own). It's been 10 years since I've injected (except for occasional short-term regular-insulin shots when my pump goes temporarily out of whack). I think I should contact my doctor now to get advice, just in case.

5. Curse thoroughly (and hope my daughter doesn't hear) as I try to get one of the four precious 43-in infusion sets into my arm, using a device that's really made for use with two hands (duh!). Then try to keep it in as I place Tegaderm on the tiny sides of the infusion set so it doesn't pull out (with one hand, remember). With the first new infusion set a few days ago (a Quickset for the Minimed paradigm pump, for any diabetic pumpers out there), I didn't get the needle in right and got the "no delivery" beep from my pump, and had to redo it. With the second set, I got it in, only to realize the Tegaderm was downstairs; when I put my shirt sleeve ever so gently over my arm, the infusion set plumb fell out! One more time (late for work and daughter yelling for me, of course). At least I can use the infusion needles from the 23-in catheter sets, so I still have two 43-in sets left. I want to call the pump manufacturer and tell them these sets need improvement, but it won't help me for now. Oh, and I already tried my legs and "hip" - no good at either site, with either my usual Silhouette) or Quickset infusion set. Also, my daughter keeps grabbing my arm right at the infusion site as I pick her up, which is painful and also risks pulling it out. I'm just biding my time til I can start using the abdomen again!

6. I do want to praise all the helpful folks along the way in sending my Christmas presents: The online retailers who provide free, fast shipping and actually deliver! The mail room folks at work who let us send personal packages; even the USPS and UPS folks who've figured out to put their mailing labels on top of tape, so you can quickly remove it and put your own label on a box. All these little things really, really matter to a diabetic working mom who's about had it by the time I even get to the point of dealing with presents.

Friday, December 4, 2009

Thanksgiving fallout - and no, it's not about blood sugar

I'm only a little exhausted tonight. Somehow, the Thanksgiving weekend is still chasing me. An air mattress with a slow leak led to two nights of poor sleep, plus there were the usual difficulties of traveling with a toddler who needs a night to get used to any new place, then gets overexcited from new people, new pets, lack of routine, and too many cookies, and a house that's not toddler-prepared like our own. Not that we can ever leave her alone completely (it's amazing how fast a toddler can find trouble!), but we don't have to be "on" her constantly the way we do in someone else's house. Between that activity and avoiding wheat, I didn't have any trouble keeping my blood sugar down - in fact, I had to keep close tabs to keep it from going too low.

Don't get me wrong, we had a wonderful time (Thanks, Aunt Linda!). Seeing family and friends and touring Brooklyn at the holidays was fun. We (especially the two-year-old) had a blast at the Transportation Museum, too. And who can really complain next to the work that was put into a meal for 26 people (a relatively small gathering this year, too). Or the worry that my sister- and brother-in-law went through, having just had a not-very-big (though beautiful and perfect!) baby the Monday before Thanksgiving, and been dumped at home with no pediatrician available (except for "emergencies," which they couldn't quite figure whether they were in), as the baby nursed seemingly constantly.

I tried to offer my most useful advice (knowing that I was not their doctor or any kind of real medical professional; I only write about such things). I certainly hit that exact same point, about three days after giving birth, when the baby suddenly got hungry, yet I didn't quite have what she needed but my baby was almost twice as big at that point. As I understand it, that's exactly what helps the real milk (as opposed to colostrum) come in. I distinctly recall that point when I was nursing for an hour and a half, only to have baby H demanding more a half hour later (or even sooner). But because of my C-section, I was still in the hospital. For better or worse, I had all the advice of the nurses and lactation consultants (often directly contradictory advice), and I got the sense, by the time I went home, that the "norm" has a wide range - in terms of both how often a baby feeds and how the mom's body responds. I also got the sense that, while a lot of variation is normal, many things can go awry in little or big ways, and you have to cope with new things at each point; it's like boot camp for the ever-changing state that is parenthood.

Despite my daughter's big size at birth (9.5 pounds), she lost more than 10% of her weight in the first few days. I think it was almost entirely water weight, because both I and she were so bloated! Nonetheless, the 10% mark is a line that must not be crossed: It triggered a SWAT response from the nurses, who swooped in with a strange device consisting of an enormous syringe containing formula, connected to tubing, which I was instructed to stick into my nursing infant's mouth (yes, you get tie picture). I had to push the plunger of the syringe down slowly while holding my baby (with the extra-large head) and nursing, all of which was entirely new to me (of course, technically I have plenty of experience in pushing a syringe plunger).

As I understand it, most babies lose about 10% of their weight in the first week, and then rapidly regain it, but some don't regain it without a lot of help - hence the SWAT approach. And the nurses make it seem as if you are the first people this has ever happened to (or, in my sister-in-law's case, she wasn't told anything about it, as far as I can tell - or if she was, she was in no state to remember it and should have received written information).

I'm also glad I was still in the hospital because my blood sugars were so low. I didn't use any insulin at all for several days, and for a very long time afterward I was using far, far less than usual. It was comfortaing having doctors and nurses on hand to watch over that and to provide helpful calculations to guide how much insulin I would need - although I ended up needing even less than the small amounts they recommended. My sister-in-law doesn't have that issue, but any new mom has plenty to deal with and needs more support than she had for those first few days.

So, Thanksgiving held a lot to be thankful for, but also a lot to recover from!

Meanwhile, on Tuesday I got trained in my new CGM (see previous post). There's a lot to love about it, but I have also some critiques (some things that are no different from the previous generation, even from a different manufacturer). The device really does give pretty accurate readings, especially when I "calibrate" it with my regular finger-stick blood sugar readings. This is a vast difference from the previous device I used. Perhaps it was because I was pregnant (even though I was in excellent control), but that device only showed the general trends, and often would beep to signal low blood sugar when I didn't have a low. Now, I know the new device is still not meant to be used to calculate insulin boluses, but it's nice to know that it's pretty accurate.

My main complaint, at the outset, is that the device (my insulin pump) beeps if it loses its wireless connection with the sensor that's in my abdomen. I don't mind it beeping during the day - but when I'm asleep I don't want to be woken up for that reason. My sleep is far more precious to me than knowing what my blood sugars were for a few hours during the night! Since I don't have a particular problem with hypoglycemia unawareness, I'd prefer the option to turn off that alarm while I sleep; maybe it could be set to resume after a certain number of hours, to ensure I don't forget to turn it back on.

At least the alarm isn't very loud, unlike the one with the previous device. You have no idea (but my husband does) how annoying it was to be awoken, most nights, with an alarm right in my ear, especially the many times it was a false alarm! But I used it for much of my pregnancy, because I had temporary hypoglycemia unawareness, and I was terrified both for myself and for the growing life inside of me.

It's so wonderful to know my daughter now, of course, and to realize how healthy and happy she is, even if she's got a constantly running nose because of a month's worth of colds, followed by two-year molars, and even when she throws a fit because she can't watch Elmo anymore after two hours or can't eat a fourth cookie. (Am I going to get in trouble, years from now, for stating this publicly? Probably. I'm sorry, dear, but take comfort that Elmo is Elmo precisely because of the millions of other toddlers before and after you who have thrown fits when they couldn't watch him. Ditto the cookies.)

Phew! TGIF; no kidding.

Tuesday, December 1, 2009

Continuously monitoring my continuous monitor

I'm sitting in my recliner, taking my pump out of my pocket every few minutes, and pressing a few buttons to view my EXCITING new continuous glucose monitor (CGM) in action. The insertion site is separate from (in addition to) the site for the pump, but the CGM sensor sends its wireless signal to the pump, so it acts as the central database for both the CGM readings and the pumping. Neat!

It took a while for the CGM to start taking readings. I have this strange problem wherein one side of my abdomen looks perfectly normal, but all the injections over the years, plus the pregnancy, must've done something to the tissue underneath (why only that side and not the other, I have no idea), because the insulin pump constantly has trouble with delivery on that side. Likewise, the CGM's sensor (the tinny metal filament that sticks into the skin) seems to be having trouble getting initial readings on that side. But I'm using that site because the pump is on the other side (of course!). Later on, I might try my thigh or another site, but the abdomen is the officially-approved site, so I'm starting there.

Still, the insertion of the CGM sensor went vastly better than I remember it working (with a different device, but similar enough), when I was pregnant. All the extra blood vessels in my abdomen during pregnancy caused real trouble, with both the insulin delivery and the CGM. Plus, the CGM insertion was painful at that time; whereas this time, it was almost painless, far better than even the insulin pump infusion sets.

I've got lots to say about Thanksgiving - like the fact that I had a hard time getting enough to eat, oddly enough, because I don't eat wheat. But now, I'm going to take care of my blood sugar, which seems to be running a little high, and regrouping after a flury of attempts at buying Christmas gifts online. (If it weren't for all the online retailers, everyone on my list would be getting gently used items from my own attic!)