Friday, April 29, 2011

Type 3 Diabetes?

I recently came across the term “type 3 diabetes.”  It’s a term apparently used for those who love and care for people with diabetes.  I like the idea of being acknowledged and appreciated for the role I play, but I’m not sure about this term.

Giving me the label of having any kind of diabetes seems odd.  I’m grateful that I don’t have diabetes.  My physical health is unimpaired by my daughter’s diabetes.  In fact, it may be positively affected by the better food choices we make, and the focus we put on regular exercise.

At the heart of the term seems to be the idea that a person living with someone with diabetes lives with diabetes too.  This is undeniably true.  We live with the highs and lows and their concurrent physical and mental swings.  We live with the pauses in the day to test, count carbohydrates, change a site or give an injection.  We often live with financial burdens of the disease.  Our homes are full of diabetes stuff.  We experience the frustration and anxiety of diabetes both through our own fears and through concern for the mental health of our loved ones. Diabetes is not ever-present in the way it is for someone diagnosed with the disease; but its’ part of the package of caring about them.

For parents of young children with diabetes, diabetes takes up an even bigger part of one’s life.  An infant or toddler with diabetes needs a parent or caregiver who can test blood sugar, recognize and treat symptoms of highs and lows, administer insulin, calculate corrections, program insulin pumps, analyze blood sugar data, count carbohydrates, plan meals and snacks, anticipate the effect of exercise, lethargy, illness or excitement , schedule and drive to doctor’s appointments, order supplies, and do every other tiny thing an adult with diabetes would do independently.  We’re not pricking our own fingers or getting the shots, but the work part of the disease belongs solely to the grownups.  A parent of an elementary aged child begins to transfer some of these responsibilities, but is still ultimately responsible for the child’s health and well being and must continue to carefully oversee these details.  The social aspects of diabetes begin to get stickier and we must begin to guide our children through situations which, I hear, get even stickier as the middle and high school years approach.  This support and care is provided out of necessity, but fueled by love; a different dynamic than self-care for a disease.

My conclusion is that the term “type 3 diabetes” is at best an awkward one.  It’s a valiant effort to describe the extent to which many people go to care for and support loved ones with diabetes.  It’s a big job and an important one.  But the term itself is confusing and not terribly accurate.

I have a bumper magnet in the shape of a JDRF sneaker, which says, “I Love A Child With Diabetes.”This phrase describes my commitment to my child’s health on a daily basis, and my wish that one day there will be a cure so that I can take a sharpie marker to the last 2 words.  It’s wordier, but I think it better describes my role.

Or, if you prefer, you can just call me supermom. 




Tuesday, April 26, 2011

The Chocolate Rabbit

Every year, the Easter Bunny brings my daughter a chocolate rabbit.  He seems to understand that while candy isn’t a part of her everyday diet, Easter should be an exception to the rule.  And that if there should be an exception to the rule, it should come in the form of chocolate.

This year’s rabbit, pictured here, was originally 6 inches tall. 


Now slightly shorter (and harder of hearing), his ears were solid, but most of the rest of him is hollow.  Made of dark chocolate, he weighed 4 ounces yesterday afternoon. 

Calorie King tells me dark chocolate has 13.5 grams of carbohydrate per ounce.  Information is power, of course, but I can’t conceive of how I’d carve this guy up into 4 completely equal pieces.  I’d need some sort of engineering degree.  And if I cut him up, she’d miss out on the fun of biting the ears off, an opportunity every chocolate bunny eater should have.

So I guessed that those ears, since they were solid and fairly big, constituted approximately a quarter of the total bunny weight.  Thirteen carbs were bolused for.  It turned out to be a pretty good guess. 

Much more importantly, my daughter enjoyed every nibble of bunny ears.  And tonight she has plans to eat the head.  Which might only be 8 or 10 carbs.  Unless the solid chocolate extends further down than I think it does. Who knows? In the long run an educated guess is better than a wild one, and both may be better than denying someone the joy of chocolate rabbit ears.
 

Friday, April 22, 2011

Easter Bunnies

I think we have more stuffed rabbits than the average household. Easter guests who would ordinarily have brought my daughter a package of peeps or jelly beans unfailingly chose the stuffed bunny (or occasional chick) instead.  Eight Easters later, we have this:



Where to put them so all our Easter guests have chairs?

Happy Easter!

Wednesday, April 20, 2011

Diabetes' Spring Break Adventure


Diabetes came on vacation with us last spring.  It was treated to a lovely 9 day jaunt through London and Paris.  We didn’t want to bring it, but given no choice, we packed its bag and dragged it along.

Its bag was the largest carry-on we had.  Crammed full of contraband items such as syringes, sharp lancets, juice boxes and liquid insulin, it was the one nobody wanted to carry.  After spending hours on the internet making sure diabetes' bag wouldn’t get confiscated, it successfully made it through security with nary a question.  Its host had a little more trouble.  She was wanded, and her insulin pump (technically diabetes’ luggage) was wiped for explosives, as were her hands.  The TSA decided she was not the most adorable 8 year old terrorist in history, so she was allowed to continue with us on our journey.

Throughout the day, we checked on diabetes frequently.  It did not seem to be appreciative of the unusual routine and foods concurrent with international airline travel.  Blood sugars were high, despite frequent checks, temporary basal rates, and corrections.  It didn’t even respond to calisthenics in the airplane bathroom.  It finally settled down once we were off the plane and walking through the airport. 

Until it fully realized that the time had changed.  “Why are you eating breakfast at 3 a.m.?”  “Why did you change all the pump’s basal rates to different times?”  “Why are you walking miles this morning when you should still be in bed?”  We refused to give in to its whining, except to keep testing more frequently and treating as needed.  Crazy high blood sugar was corrected at Buckingham Palace.  The guards didn’t flinch.  Piles of smarties were consumed on the floor (literally) of Notre Dame with one of the lowest numbers diabetes has treated us to yet.

Diabetes wasn’t thrilled with the strange foods either.  But it got them anyway.  Its pithy comments are in parenthesis.  We ate fish and chips, and croque monsieur (SO not low fat), crepes (lots of carbs for a thin pancake, eh?), traditional English breakfast (where’s my shredded wheat and strawberries?), lots and lots of sandwiches on white bread (have these people never heard of whole grains?), and chocolate mousse (we NEVER eat dessert for lunch).  But we counted (read: guessed) every carb with some accuracy, and walked it all off.  We plowed through vials of test strips, leaving DNA samples across two cities. There was an occasional rebellion, but for the most part we kept diabetes from completely flipping its lid, allowing its host to fully experience and enjoy the cities she visited.

It was pretty clear that diabetes didn’t enjoy its vacation.  It would very much prefer to stay home and stick to the same menu and routine every day. Frankly, bringing it along was no picnic for us, either.  But for the time being, it’s going to have to keep traveling with us. No matter what tricks it pulls, or how much it whines, we won’t let it stop us.

Thursday, April 14, 2011

Pie?

It’s birthday season among my daughter’s circle of friends.  This month will bring a couple of birthday parties, with their fun, and their inherent food obstacles.  We’ve gotten the basics down pretty well, but last weekend’s party brought a challenge we’d never had before.

“Mommy, if I get picked to get a pie in the face, can I do it?  How would we bolus for it?”

It was a very clever Nickelodeon Game Show-style party, where a host gave the children a series of challenges such as throwing rubber chickens into a soup pot, and balancing plastic plates on the birthday girl's head.  The winners were given tokens for prizes, or the opportunity to pie someone in the face.  It turns out the “pie in the face” was just a paper plate full of aerosol whipped cream which, when aimed by a 9 year old peer, ended up mostly in one’s nose anyway.   My daughter did not have the honor of being “pied,” but of course she could have participated.  A little whipped cream is a negligible treat given the amount of pizza and cake that was later to come.

I try to make my answer “yes” when the question is whether my child can do something “even though she has diabetes.”  It should always be so.  Even if the pie was of the gloopy coconut cream variety, we would have figured it out, or made a guess.  More math, blood sugar checks, my staying during the party to be able to judge exactly how much pie went in the mouth versus the nose would all be worth a bit of salvaged childhood.  After all, it’s not every day you get the opportunity to be pied in the face.  But it is every day we live with the drudgery of diabetes.

One lucky winner had the honor of sitting in the “booger blaster.”   This prize involved green slime pouring on her from a giant nose attached to the ceiling. While, yes, I would have let my kid do it if she wanted to,  for many reasons I’m thankful I didn’t have to ask the manager how many carbs were in the boogers.

Monday, April 11, 2011

Testing Myself

I do not have diabetes, nor does either Type 1 or Type 2 run in my family.  Yet, I test my blood sugar from time to time.

Not being the most coordinated of people, I've accidentally poked myself with a lancet more times than I'd care to admit.  Sometimes it's when I'm trying to slide the device into the elastic loop in the carrying case.  Sometimes it's when I'm changing the lancet.  I've also done it while trying to fish spare change out of the sharps container (which we no longer keep next to the piggy bank), and while picking used lancets out of the well in the car door my daugher uses as a repository for test strips and occasional other items in need of disposal.  So on those occasions, if the meter and a strip are nearby, I check things out.

I've also tested on purpose. Sometimes it's to check the accuracy of the meter.  Yes, I know they make control solution for that, but mine expired many, many years ago.  So if it seems we're getting into a string of weird numbers, I'll use my own blood as "homemade" control solution.  I've also tested a few times because I've felt "weird."  Inexplicably tired, thirsty, dizzy and lightheaded are all symptoms which have led me to check. 

Generally, I've come out with what I would consider stellar numbers if I were checking my daughter's blood, and for that, I'm very grateful.

 There was once, though, when I was 70.  I know that's fine, especially just before lunch.  But I poured myself a swig of juice, just to be sure.

Thursday, April 7, 2011

Pockets!

You may recall that a couple of weeks ago, I was dreading going clothes shopping.  I was certain we'd find no shorts or capri pants with pockets.  Or that any we found would have strange words scrawled across the bottom.  I was convinced the capri pants would be long enough to be regular pants.  The shorts would fall down as soon as the insulin pump landed in the pocket.

Maybe it was the good vibes sent by those of you reading, or some sort of weird reverse jinx I put on myself by writing about it, but it turns out that pockets are plentiful this spring.   In most stores, there were choices with pockets, and many of them even fit!  We hit good sales, and came home with several pairs of shorts and capri pants.  I'm certain she'll have more choices this summer than ever before.  We ran out of time to shop before we ran out of choices.  I'm not dreading the return trip nearly as much.

As we drove home, discussing our impressive haul, my daughter said, "Maybe the people who make clothes realized that some kids need a place to put their insulin pump." 

I wish she was right.  It's one of many things I wish people would realize about the challenges of living with diabetes.

Monday, April 4, 2011

The Roller Coaster

We rode the diabetes roller coaster this weekend.
If you’ve never had the pleasure, let me explain.  It starts with a significantly low blood sugar. Sometimes these, if caught quickly and treated appropriately, resolve with no lingering effects.  Other times, however, people experience what is technically called the Somogyi effect (named after the doctor who discovered it), also known as a rebound.  To summarize the definition on the Children With Diabetes website, this is high blood sugar which occurs after an extreme low blood sugar from an untreated insulin reaction.  The body releases hormones to counter low glucose levels and blood sugar suddenly skyrockets.
The trick, for us, is to figure out how much (if any) of a post-low high is from hormones and how much is from over-treating the low, or from some other cause altogether.   Otherwise, we board the roller coaster. 
While others’ experience certainly may vary, we find that if we treat highs which occasionally come from a rebound with what would ordinarily be an effective amount of insulin, my daughter is back to the 40’s again in no time, and we’re starting all over.  They're somehow not the same as a highs caused by bad carbohydrate counting, or illness, or sitting around.
Our current ride started with an out-of-nowhere 48 on Friday morning.  She was perfect at lunchtime and then 280 when she got home from school.  She had a friend over, but it was raining, so it would be a sedentary playdate.   I gave about half of the suggested insulin for snack/correction.  By the time the friend left at  5:30, my daughter's blood sugar was 52.  Juice, supper, a friend’s theater class play, and by 8:00, she was 250.  And so it went, trying to be patient, but eventually assuming the high was there to stay and needed to be knocked down only to have her end up low again.  Saturday saw a wide range of imperfect numbers.
Oddly enough, things seemed to resolve during Sunday afternoon’s softball game and have been pretty steady since then.  Maybe it was the temporary basal rate during the game?  Or the under-bolused lunch?  Maybe we'd just been patient enough overnight that she never bottomed out again?  If only we knew...
There’s no doubt that living with diabetes is like an amusement park ride in many ways, but I wish it would take note that we prefer the kiddie rides that go around in a perfectly straight circle.