Sunday, December 27, 2009
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
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
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
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!)
Friday, November 20, 2009
I just wanted to make a note of my new hero: Ray Allen, of the Boston Celtics. I heard him yesterday on the radio, talking about his kid who was diagnosed with type 1 diabetes last year, at the tender age of 31 months. He said he just had to speak out and try to spread the word about what diabetes is, because he knows most people don't pay much attention to it. He pointed out that the symptoms of type 1 diabetes can mimic the flu - so it could go undiagnosed especially during this season of so many flus - and that kids, even today, do die from diabetes because it isn't diagnosed in time. I just wanted to shout out my car window, "He's right! Listen to him!"
I thought about when I developed diabetes, what it felt like. First it was a couple of months of unusual thirst and weight loss, which at first I didn't mind, being a pre-teen. We travelled to the South, and I thought my extreme thirst was because of the heat, and all the bathroom trips because of my thirst. But then it was exactly like the flu - that's what we thought it was, my family and I, even though it was the middle of the summer. It was just so exactly like the flu: throwing up, loss of appetite, aches. Somehow, I ended up drinking a lot of sweet drinks, like Cool Aide (though I don't recall my mom ever serving that any other time). It was the only think that tasted right, even though, of course, it was the worst thing I could consume at that point, unbeknownst to me. The thirst at that point just seemed like a result of dehydration due to the throwing up. It wasn't until I had trouble breathing that I went to the doctor - who, fortunately, took one look at me and tested my blood sugar. It was around 700; the doctor said I was close to diabetic coma. And I was one of the lucky ones. My mother has always felt guilty about this - but I always think, how could she possibly have known? No one in my family has type 1 diabetes - not even in the very extended family.
I read recently about a child who died because she had flulike symptoms, and her mom called the doctors office, and was told to call back if the child didn't get better in a couple of days. It turned out to be - duh - diabetes.
I wouldn't want to panic mothers who are already freaked out whenever their kids get sick - like I do - but I would want to tell people, if your kid seems to have the flu, pay attention if he or she is also really, really thirsty and/or peeing a lot. I recall being sick at other times, and my mom had to force me to take fluids; but with diabetes, I was begging for it. Also pay attention if your kid is not fluish but peeing a lot or really thirsty, or losing weight for no obvious reason, because that's the earlier stage (I lost 10 pounds in two months, then another 10 pounds in about two weeks, during the "flu" part). And if your doctor (or your doctor's office personnel) tells you not to worry, mention diabetes by name, and follow your instincts.
I guess just knowing about diabetes is the main problem; most people think of type 2 diabetes, which has such different symptoms (and treatments) from type 1 that I often bemoan they are called the same name. But I can preach all I want - I doubt anyone who doesn't already know a little about diabetes is reading this. So it comes back to praising Ray Allen - because ordinary people who've never paid much attention to diabetes will actually listen to him.
By the way, if you'd like to comment on this or any other post, click on the word "Comment" right below the post. This blogspot site has a lot going for it, but that part of the layout ain't one of them. I'd love to hear from you. What do you think of stars like Ray Allen who pitch for us "little" folks (little as in not famous; not little as in having "juvenile" diabetes)? Did you have problems getting your diabetes or your kid's diabetes diagnosed? What would you tell people about it if you had the chance?
Tuesday, November 10, 2009
It only took waiting in line for more than 2 hours during dinnertime with our two-year-old and probably a thousand other kids and their parents, in a local school. And we were the lucky ones, who got there 45 minutes before the town's clinic started. We were inside the school when the clinic began, whereas most of the line snaked outside and around the school building. Then, they had the brilliant (note the sarcasm) idea of letting people who said they wanted only the nasal spray go into a separate, much shorter line; but when we got to the front, those folks were allowed to choose whether they go the spray or the shot. We waited in the original line - our daughter had a cold, and we just weren't sure enough of the vaccine would go in, never mind if she wiggled. We ended up being one of the last people to get the shot, though they did still have some nasal spray at that point. I just wouldn't want to have been one of the folks waiting in line for the shot because they couldn't get the spray (because they're high risk), only to be turned away.
I hated having to make the decision on the fly between spray and vaccine, not only because of what I noted above, but because the vaccine contained mercury. I was finally convinced by the attendant - they had a lot of these folks available, and they did seem knowledgeable. She said the shot contained only the amount of mercury that's in one tuna fish sandwich. I guess that's a sorry comment on the state of our food sources, but in fact it convinced me to go with the shot. I didn't like not being able to discuss it with a doctor or check the statement with another good source - I'm doing that right now!
Here's one site I found: . Granted, it's from Washington state. But it notes that the level of thimerosol (the mercury-containing preservative in the vaccine) should not exceed 1.0 microgram per 0.5 ml dose of the vaccine. Now, they noted that Washington state has suspended that limit for he current H1N1 vaccine program. But let me check if that's the amount generally found in one tuna fish sandwich...Hmmm. The FDA says regular albacore tuna contains 0.353 parts per million of methylmercury (apparently a more permanent, i.e. harmful, form of mercury than what's in thimerosol). Uh oh. If I'm doing my conversion right, 1 microgram per 0.5 ml is 2 parts per million, far more than 0.353 parts per million. The only comfort is that they type of mercury in thimerosol breaks down much more quickly than the type in tuna - so it's not in the body as long. I'm going to have to double-check with her pediatrician about this.
Well, I'd already decided to try to get the nasal spray for the follow-up vaccine. And I do limit my daughter's fish consumption otherwise, so she's not getting a lot of mercury exposure overall. But I think I'll avoid feeding her tuna for a few weeks.
I'm sure I overthink this sort of thing, but I'm also pretty sure I'm not alone in this habit, especially as a mother/parent. I think I did the right thing. H had a low fever after the shot, and developed one again at daycare today. But she was otherwise fine, and by the time I picked her up this afternoon, she wasn't hot at all. It was just the vaccine doing its work.
I did happen to meet another mom with type 1 diabetes in the line - right behind us! So that made the wait more interesting for me, if not for my daughter or ever-patient husband. I'll have to share that discussion in my next post, though. I need some rest!
Sunday, November 1, 2009
Fortunately, my own personal virus is just a cold. Ah, daycare. At least my daughter is in family care, so there are only 5 other kids for her to exchange slobbery germs with. Still, as any parent knows, those kid germs move faster than anyone else's.
I haven't noticed my blood sugar being much affected by this cold, but stress seems to have been doing a good number on my numbers. Work is stressful these days - but I should be thankful to have work, right? But work could take up all my waking thoughts quite easily (you don't want to hear about that).
So could my daughter's changing moods and thoughts. She's going through what I think is standard for her age: high drama. I wouldn't call it the terrible twos, because much of the time it's positive. All her stuffed animals have come to life in her head, in just the past couple of weeks, it seems. Of course, she likes to have help animating them, and the scenarios tend to be rather repetitive (rather). But she gets the biggest kick out of the little girl mouse popping out the doors of her castle (made for other dolls) and saying "boo!" I mean, she giggles hysterically every time; then she says "do it again!" Yes, when I try to suggest a different game, sometimes a small fit ensues; but she can actually be persuaded most times. Is that common for a 25-month-old?
Yet when trouble comes up, it's Big Trouble: At daycare last week, after a too-short nap, when she saw a little boy (really the sweetest boy) sitting in the chair she often sits in to "read," she screamed and grabbed and tried to pull him out of the chair -- apparently by the neck. I know this sort of thing is common at this age; at least it wasn't hitting or biting). Both I and her daycare provider (Kim) talked to her about not hurting others, and Kim helpfully looked up ways to handle this stage, as she hasn't had any other girls this age before (she was a preschool teacher for a long time). Apparently, having her own special spot can help H head off such emotional collisions. She can go to it when she's had enough of cooperating and sharing. I just feel bad that I can't see the problem first-hand, it would be easier to figure out how to help. But we don't see this at home; she's the queen bee in her nest of toys.
Meanwhile, I'm still trying to get her the H1N1 shot (aren't most of us still?). Actually, I've been hearing that other states are doing clinics, whereas our pediatrician can't seem to get more than a handful of doses each week, and those are either snatched up before I can take a breath in the morning or are earmarked for the "high risk" kids. Because H is one month past her second birthday, she doesn't officially fit that category; but as her pediatrician admitted, viruses don't pay attention to such artificial cut-offs. So here we are. And of course, I am in the high-risk category, but adults can't get any H1N1 vaccine yet, at least in Massachusetts. I just want to get this done so I can stop searching for the vaccine every day, and stop worrying. So add that to the stress list.
But enough about viruses. I am looking forward to getting a continuous glucose monitor that syncs with my insulin pump (it'll tell the pump my blood sugar readings when I go to enter insulin), now that my insurance will cover it (the insertion sets, which must be changed every few days, will be expensive, though). I've had experience with a CGM before - during pregnancy - and I know it'll be incredibly helpful (particularly for that black box that is the night time). I hope it will be better than the previous generation of CGMs. I used a different brand during pregnancy, one that didn't sync with my pump. I don't want to name it because I think that brand has come a long way, too, from what I hear. But it would beep in the middle of the night a lot to signal a low when I wasn't low; though it always beeped when I really was low. I hear that with this new monitor, if you sync it with your finger-stick tests at the right times of day, it's really accurate, so you only have to do maybe two finger sticks each day. My calloused fingers would love that - though I've been thinking of taking advantage of those callouses by taking up Celtic harp playing (no kidding!).
I'm curious what you other moms out there are experiencing with this H1N1 thing. Are you as worried as I am? I'm also curious if any other type 1s have experience with the current-generation CGM from Medtronic.
Sunday, October 25, 2009
Mind you, I have a hand-me-down lion costume, a new bee costume from my mother-in-law, and a mermaid costume that I bought recently at a yard sale. But no, my daughter has her own ideas. She's barely two, but she has decided, definitively, that she wants to be a cupcake. Over the weeks since this idea formed in her head - perhaps after the four cupcakes she ate on her own birthday - it has become more elaborate; it's now a bear cupcake.
Now, I don't get offended or feel cravings, as you might think, when I see her eat cupcakes or talk about them. Cupcakes long ago ceased to be food to me. Oh, I have a sweet tooth, all right; I find a way to eat something chocolate almost daily. But in the early years, the traditional diabetes diet trained me to think of such delicacies as rare treats. Even with the pump - which allowed me a lot of freedom relative to before - I still can't manage the sweetness of most cupcake frostings (maybe the cupcake alone, but what's the fun of that?) Top that off with the problem with wheat, and it's just not worth it.
I do vaguely wonder whether it's a good thing for my daughter to consume so many sweets at once. I know that eating sugar doesn't cause type 1 diabetes (some misguided comments from strangers to the contrary). But I an still sensitive to how bad sugar is for health, even for a nondiabetic. I do try to ensure my daughter eats a healthy diet most of the time. And I like to let her enjoy the freedom that I don't have.
It certainly was strange when my daughter began eating real food instead of baby mush. It felt like I myself was cheating when I starting feeding her bread, and when she ate her first piece of cake. I had to work hard to remember what "normal" people eat, and I had to reassure myself that it was okay for her to eat, say, pasta. Oddly, she turns out not to like pasta much, but she does like crackers, and most definitely cupcakes! She doesn't like red meat yet, and I'm happy not to push it. She gets plenty of protein, and I've often thought that, if my diet weren't already so restricted in other ways, I might have become vegetarian (probably for humane reasons as much as for health).
Thursday, October 22, 2009
My daughter notices everything else. When someone is hammering in the house next door, she asks "What's that?" When the tea kettle whistles, she asks, "What's that?" When she sees a new book, she asks "What's that?"
But when I pull my pump out of my pocket, and the tubing hangs out, and I plug in the insulin delivery with several beeps, she doesn't particularly look - nor does she clearly avoid looking at it. I guess she just figures that's part of her mommy, and Mommy is such a special person that she gets to be a little different from everyone else. I'm not boasting here; I think most moms know that Mommy is special to their kids - it's part of the job. I just know that it's going to come up at some point - the questions.
A week or so ago, my husband, daughter, and I were driving to eat lunch out, and I pulled my meter out. Now, I used to stick my finger with a straight lancet, without the "clicker." I didn't like the anticipation between when I pressed the button and when the lancet hit the skin, and I didn't like not having complete control on how far it penetrated - i.e., how much it hurt. But since having a baby, I haven't wanted to risk loose little lancets lurking around. So I've made myself get used to the clicker. Also, my fingers are calloused enough, after all the testing I've done during and after pregnancy, that it doesn't hurt so much.
So my husband is used to me calling out, as he's driving, "Okay, I'm about to do it, so no sudden stops." This time, he said himself, "Wait, I'm about to stop." I said, "It's okay, you don't have to worry anymore about that..." The little voice from the backseat chimed in, "It's okay Daddy, don't have to worry." We know she's paying attention. I think it's just a matter of time before she decides how to comment.
Tuesday, October 20, 2009
And all is a lot, in the case of a diabetic mom. I'm pleased to find out, there are a lot of us sharing our stories out there, and they seem to confirm that this is a crazy disease that upends your life, but that there's a lot we can do to make it work, and a lot we can do to help each other - both in simple support and actual information. It seems we have a lot more in common than doctors realize - it's not just "work with your doctor to tailor your medication and diet to your individual needs," though of course we are all individuals ("I'm not!").
I only wish I had known about all of you when I was pregnant, and reading "What to Expect..." It was more like "What you would expect - if you were normal." We diabetics get relegated to about chapter 500 (OK, I exaggerate, but only slightly). There's a little bit of helpful information, like don't exercise to more than 70% of the "maximum safe heart rate" for your age (and a way to calculate that). But otherwise, it's a list of information written for someone who's never heard of diabetes before - not someone who's lived with it for, say, 20 years.
One reason I'm thinking about this is my sister-in-law is pregnant (actually, both my sisters-in-law are - how great!!). A couple of days ago, she was asking me about my experiences during my pregnancy. And we kept coming up with these points where a regular pregnancy and a diabetic one diverge. Like, what did I think of the advice to avoid all artificial sweeteners during pregnancy? That's one of the pointers I just had to laugh about while I was pregnant. You want me to test my blood sugar 12 times a day, eat like a bird despite massive cravings (nothing like a regular diabetes diet), AND avoid artificial sweeteners (and coffee, while I'm at it)? I don't think so. Not to plug a product, but I had been using Splenda before pregnancy, and I figured, since it doesn't actually get metabolized and passes right out of the body, it was okay, as long as I wasn't guzzling diet Cokes all day. I drank one (strong!) cup of coffee every morning throughout pregnancy, with Splenda, and tried to avoid artificially sweetened drinks and food otherwise, but I did have diet Coke occasionally - better than a margarita, right? (Maybe the coffee is what made my daughter so lively!)
Another diversion from the norm (warning: the faint of heart might want to skip this paragraph): My sister-in-law is getting a bit nervous (as any woman in her position has a right to be) about the impending birth, worried about when she'll go into labor and how she'll handle the pain. I had little advice to offer. For me, the "when" was just "when is the doctor going to fit me in?" because I wasn't allowed to go past my due date and would be induced if it went that long. (Actually, I ended up being induced a week ahead of my due date, because I developed pre-eclampsia and I looked so swollen, I think the OB just took pity on me.) And after 22 hours of labor, I had an emergency C-section (probably just because my baby's head was, well, huge, but also because I didn't progress). I experienced some of the pain (during those 22 hours), with an epidural that didn't quite stay in right (but I was glad to have something!). But of course, when it came time, I had complete pain blocking for the C-section. That said, plenty of women have C-sections, so maybe my experiences will help my sister-in-law after all. Still, not all women have an IV drip (glucose and insulin) attached to them, right from the get-go, and get plopped in the bed, with no chance to stay upright, walk, or do any of those things that move labor along.
It just seems like, with every little thing, diabetes creates an alternate universe, so that you can feel connected to others only up to an extent, but then suddenly your experience veers off and is completely foreign from everyone else's. I love being a mom, obviously because I love my child, but also because it's given me a chance to connect to other women in a way I've never experienced. Yet all these little differences remind me it's not quite the same.
And yet, when my daughter smiles at me, none of that matters.
Sunday, October 18, 2009
I’m pretty nervous because the last time I didn’t get a flu shot (about 19 years ago), I was hospitalized. Now, I’m not even talking about H1N1 (formerly/sometimes known as swine flu). I won’t be able to get the first round of that vaccine that’s available because it’s live-attenuated, so folks like me with abnormal immune systems aren’t supposed to get it. We – who are among the most at risk – must wait. I’ll be sure to get my daughter vaccinated ASAP, with whatever is available. At least she can get the live-attenuated vaccine; she’s healthy, thankfully.
I’m always surprised to hear people say they don’t get flu shots because they’re afraid they’ll make them sick – or it’s made them sick in the past. Yes, there have been odd reactions, as there are to virtually anything out there, from drugs to herbals to foods to bug bites. And for most people, getting the flu is bad, but not usually life-threatening (although it can be even for healthy people). So maybe the risk/benefit ratio is not so strongly in favor of vaccination for them. But I’ve had the shots for almost 20 years running, and all I get is a woozy head for half a day and a sore arm for one or two days. Now, oddly, with H1N1 in the news, people apparently are rushing to get the regular vaccine – leaving those of us who usually get it, and most need it, in the lurch. What a mess.
Still, the regular flu doesn’t usually hit its stride until January or so. In fact, in recent years we’ve been hit with seasonal flu in March or even April (I’ve gotten a little bit sick, but not as badly as I would have if I hadn’t been vaccinated). I think I’ll get that shot in time.
I am far more worried about getting the H1N1 vaccine in time, because that flu is circulating now. Lots of things kill people every day, and it turns out even healthy young people might get really sick (or worse) from this new virus. But I know just how quickly I can go from appearing absolutely, perfectly healthy to being extremely sick. Once, when I got a kidney infection, I waiting for two hours in the emergency room before throwing up on myself repeatedly. Then, the nurse chastised me for not coming in sooner. They’d taken one look at me in triage and saw a seemingly healthy young woman. But appearances can, of course, be horribly misleading. Anything that hits an otherwise-healthy person hard hits me at least 3 times as hard.
If only I were more OCD, I’d be able to get through this with just obsessive hand washing. But I can’t seem to avoid putting my hands on my face all the time after touching things, and even though I do wash my hands regularly, it’s probably not enough for these circumstances.
And now, of course, it’s not just me that I worry about if I were to get sick, it’s my daughter, and my husband. Hero that he is, he’s offered to get whatever vaccines he can to protect me and our daughter, even though he normally wouldn’t get any flu shots. And if he can get the live-attenuated vaccine, but I can’t, that’ll still help me. So thank you, dear!
Monday, October 12, 2009
The gluten-free topic is almost a blog site unto itself (oh, yes, it is: http://www.celiac.com/). By now, a lot of people have heard of celiac disease, and some also know that it’s more common in people who, like me, have weird immune systems (me by dint of the diabetes). Well, I’m not at all sure that I have celiac. I weaned myself off wheat about 16 years ago, when I started getting migraines (complete with the severe digestive distress that’s a hallmark of true migraine – no, I won’t provide details, Halloween is coming soon enough for those who like guts and gore). What made me think of dropping wheat was that I’d also broken out in hives after eating granola. I did feel a lot better when I stopped eating wheat, and I also lost 10 pounds. But I kept on having migraines. And about 12 years after I’d stopped the wheat binge (I was really addicted – not good for a diabetic), my doctor tested me for celiac disease, and it came back negative. The only problem is that some reliable sources (e.g., http://www.celiac.org/cd-diagnosis.php) say you need to be eating wheat for any of these tests to work, while others have said that certain blood tests should work even if you haven’t eaten wheat. So who knows whether I have celiac or not. Actually, I suspect I might have a straight allergy to wheat, given the hives and other symptoms I had at the time.
Either way, I’d rather not repeat the symptoms I had (as my daughter now says when eating lettuce: “yuck!”). So in addition to the diabetic diet and cooking around a toddler’s habits, I avoid wheat as much as possible, which rules out a lot of even partially processed (a.k.a., easy) food. When our daughter was a couple of months old, my husband tried several times to help with grocery shopping but ended up with a lot of food that I couldn’t eat. He’s just not used to reading labels obsessively like I am. (To his credit, he still helps with the shopping – he just doesn’t try to do it all.)
The combination of the diabetes and the wheat-free diet also means I haven’t tried food-shopping services that have saved a lot of parents. I wouldn’t be able to allow substitutions when they didn’t have what I wanted, and I might end up without the food I need (when you take insulin, you don’t just have to avoid certain foods, you have be sure you eat the right foods at the right times, more or less, even with a pump). I might have to break down and try it sometime, but so far the supermarket around the corner and my fears about the havoc it might wreak have kept me from experimenting there. But I’m gung-ho about the crock pot!
Sunday, October 4, 2009
Right now it’s dinnertime that’s causing trouble. So far, my daughter (now two) has usually eaten dinner before my husband and I do, unless we go out to eat (pretty rare). We traditionally eat dinner pretty late, around 8 pm. (That might sound odd to some people with diabetes, and it used to be impossible before I went on the pump. Perhaps I’ve been flaunting the freedom the pump has given me - why not?). Really, to be able to make a decent fresh meal after work, it takes that long. And now, though I don’t cook the fancy stuff I used to, it takes that long just to cook anything at all. And it’s a lot easier to count carbs properly when I don’t have my toddler demanding my attention every moment.
But eventually we’re going to have to find a compromise. Oh, I supposed strictly speaking we don’t have to - we could go on this way indefinitely, it wouldn’t kill anyone. But it would be better for my daughter to learn to eat dinner with us, for all the various reasons the advice-givers cite, but also just because I’d like to have family dinners. And she’s apparently decided the same thing, because a couple of nights ago, my husband asked what we’d be having for dinner. I said “soup.” Daughter H was eating her beans and rice. A few minutes went by, then she said, “Where’s Daddy’s soup? Daddy eat.” Getting upset, despite our attempts at distraction, etcetera. So we went through a sort of half dinner routine, heating a little soup in the microwave, sitting down with her, slurping for her benefit.
Amusing as it was, I wonder whether we’re headed for more of these divided-dinner nights, and how it’s going to affect my blood sugar. Maybe positively, who knows; but it always takes a screw-up or two before I figure out a new routine, or so it seems.
I’d like to get to the point where we have a compromise dinner time - say, 7:00 (like my family had when I was a kid). But I’m not sure I can accomplish that without a major change, perhaps cooking casseroles over the weekend to last part of the week. Chances are, I’ll manage that one weekend out of every month. Ready-made soup was easy, but we’re not on a soup diet, and besides, ready-made is not that healthy. We’re already eating far more ready-made than we used to, and more than I’d like.
Is this how you get to everyone going in a different direction, catching meals on the fly (and gaining too much weight in the process) - everyone going to soccer practice or PTA or some other nonfamily event? I’d hoped that with a small kid, we could manage the family meal, for a couple of years at least.
But I try to envision it: Cook the meal, all the while helping my daughter find something to occupy her time (even watching a video is not a solo activity for her yet). Sit down and divide my mealtime helping her eat (even if hubby helps, she wants my involvement), counting my carbs, then cleaning her up and letting her down from the table (because she’s done eating already), then remembering whether I’ve already programmed my insulin, then maybe eating. Then her bedtime routine, prepping her lunch and snacks for the next day (and assuming hubby helps with dinner cleanup), and maybe a chance to complain about it on my blog. It’s bad enough as it is, right?
So I think that we will postpone the family-dinner effort until she’s a bit older, despite my dream of having that one vestige of Cleaver-like family bliss, and with the hope that we don’t have to do the staged dinner too often.
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.