Dangerous and Unintended Consequences

It all started Friday evening, as I was reading the headlines to my husband, Bill. A little article on the front page of the Concord Monitor caught my eye. "New guidlines to prevent distracted driving".

It seems that our U.S. Transporation Secretary, Ray LaHood, has released new federal guidelines for automakers to help prevent distracted driving. He recommends that manufacturers create a device that will block cell phones from working in the car while the wheels are in motion.

Then Mr. LaHood went on to say that the guidelines might be extended to "all portable electronic devices that might find their way into a car."

I told Bill that to me, a "Live Free or Die" New Hampshirite, this seems ridiculous. After all, I don't text or talk on the cell phone while driving, but sometimes I have my children make a call to our destination while I am driving, and they are safely in one of the passenger seats. "Honey, call Grandma and let her know we should be there after lunch" never seemed to threaten our safety as a family on the move.

And while my kids don't have Gameboys or DVD players,I see no problem with letting kids play games on electronic devices while in a car. I thought about how the government tried to force car manufacturers to make seatbelts that belt people in whether they wanted to be or not (remember those cars with the moving seatbelts that hummed into place when you turned the key?).

I supposed out loud that the manufacturing guidelines might be effective, but that going to extreme of blocking all devices seemed silly.

"Don't you think M should be able to text a friend while I am driving?"

Then Bill said, "I wouldn't worry about the texting. I would worry about her insulin pump."

Oh.....

The insulin pump.

That thing that keeps my daughter alive. The portable thing that electronically delivers life-giving insulin to her body. The device that communicates with her glucometer to determine how much insulin she she administer when she eats.

That thing.

She will be driving soon.

If we have a car in which her insulin pump is disabled, she could kill someone, cause a serious accident, or die. If she is in a friend's car with the proposed technology, she could have a medical emergency for which her friend is unprepared. (Talk about distracted driving!)


This is not alarmist "someone could hack into my pump" bologna. After all, hacking into someone's insulin pump would be the least efficient form of terrorism ever.

But this.

This is a genuine hazard.

The thing is, infusion pumps are not only for people on insulin. Some are used for pain medication, or medicine to assist in healing spinal cord injuries. What if these infusion sets are disabled?

Any car that M entered might disable her pump if these guidelines are implemented. And those who have learned to manage their chronic, life-threatening illnesses, might just have to do without.

It is time to act. I am contacting my congressional representatives.

I would appreciate it if you did the same, before the unintended consequences of these guidelines become a reality.

100 grams: diabetic in Europe

It must be harder to be diabetic in Europe. If anyone knows if this is true or not, I would like to hear from them.

 You see, here in the US our food and nutrition labels, with which I am alarmingly familiar, identify what a serving size is. Then the information on the label is based on the serving size.

People here complain  about the "everyday American" not being able to understand our system of labeling, and have been messing around with what constitutes a "real" serving size. There have been, in the past, ways for companies to insist that their product is low in calories. They would say: "Less than 100 calories per serving!" on the package. Careful reading of the label, however, might reveal that a small candy bar was to be considered 3 servings.

Such misleading labels don't matter much to a diabetic, however, as carefully reading the label is part and parcel of the relationship with your malfunctioning pancreas.

One bag of King-sized M&Ms for example, has two servings per package(who are we kidding? this is America!), meaning that a serving is about 47 M&Ms (you can thank me for my dedication to research on this one)  Each serving has 32 carbs, which means that if M eats a whole bag of King Sized M&Ms, then she had better bolus for 64 carbs, (more than a typical meal at our house).

Even though this requires a lot of math, it's pretty straightforward.

Eat this serving, calculate for this many carbs.

In Europe, I visited supermarkets and duty-free shops in Spain, Paris and Amsterdam (just the airports for the last two).

The nutrition labels there are probably "simplified" from one perspective. They use the same unit of measurement for every "serving": 100 grams.

In other words, if you buy crackers, the label will tell you how many carbs are in 100 grams of crackers. If you buy peanuts, it will tell you how many carbs are in 100 grams of peanuts.

This is probably great if you are trying to compare how many carbs are in different items (thus learning what actually is low in carbs), but what about for calculating your insulin doses?

Do people in Europe weigh out their food and calculate how many carbs are in it, and then bolus?

Let's say I want to eat a pork chop, some mashed potatoes, and some asparagus (not very European, is it?)

100 grams of pork chop = 0 carbs. Easy.
100 grams of mashed potatoes is 21 carbs
100 grams of asparagus is 4 carbs.

Now here is the problem. After you weigh your food, you eat one pork chop at 150 grams, 138 grams of potatoes, and 68 grams of asparagus. So you have to do this:

grams of food
divided by 100 grams
times the number of carbs per 100 grams

So for this meal:

(150/100 x 0) +(138/100 x 21) + (68/100 x 4) = your carb amount.

So reducing this problem becomes:

0 + 28.98 + 2.72 = 31.7 carbs

Maybe, like with calculating for carbs at all, doing this becomes easier with practice. Maybe you get to know what 100 grams of Marmite looks like compared to 100 grams of chorizo,  and you just sort of calculate it all in your head. Or maybe you only eat in 100 gram increments.

I don't know. But I am pretty sure that I won't be complaining about our nutrition labels in the US any time soon.

Phew! 100 grams for easy calculation!

A simple childhood, and other things left behind

M was diagnosed on April 15, 2009. Our first real trip together as a D-family was that summer. Older brother was looking at colleges in California, and we committed to visiting friends, renting a car, and checking out the Four Corners area.

I thoroughly researched the JDRF website, looking for helpful tips about traveling with diabetes: airline requirements, changing time zones, transporting insulin, etc. Upon our arrival in San Diego, we found our warm and loving friends, who let us rest a bit, and then squired us around what they call "Old Town".

M was a bit groggy from a day of traveling, and seemed to be faltering as we climbed the stairs to a Mexican restaurant that our friends frequented. M whined that she wasn't hungry, but I figured that since her energy was low, sitting down in a pleasant atmosphere might not be the worst thing she could do.

Once seated, I asked her to check her bg.

It was 47 mg/dl.

In a panic, M began chowing down on the complementary nachos. I remember that day as being the first that M looked really scared since she had been diagnosed.

A 47 wouldn't scare us a much now, since we have seen her bg range from 22 to 525 over the past two+ years. But it didn't bode well for our travel experiences.

Sometimes we are right on, and everything goes great.

But more often, some minor disaster occurs that necessitates the summoning of my inner MacGyver.

Case in point: last year's trip to Manomet.

M had packed her belongings carefully, and checked the contents of her fashionable diabetes fanny pack twice.

We loaded the car, and about a half hour into the drive, I asked M if she remembered her "diabetes stuff". She assured me that she had. Since this is a near-daily interaction, I was neither concerned nor suspicious that she had not remembered everything.

Two hours later, at the beach, M wanted to eat some lunch. She looked for her fanny pack, so that she could check her blood sugar and make all of the necessary calculations, but couldn't find it in her room. We decided that it must be in the car. She searched. I searched. No fanny pack.

Being a mom, I searched every inch of luggage, beach equipment, and rolled-up towel that we had. M decided that she must have left the fanny pack right where she keeps it at home: next to her seat at the dining room table.

This was a major bummer. First of all, she was on the Luxura pen at the time. The pen was at home. As was her bg meter, Sweet Tarts, glucagon kit, and test strips.

The good news was that she had packed some extra supplies in her suitcase and the cooler.

We took inventory: test strips, extra Humalog cartridges for the pen, a vial of Lantus, 10 syringes, a half box of pen needles.

Hmmm, how could we make this work? We had no way to test M's bg, and no way to administer the fast-acting Humalog for meals.

M did have an appointment at Children's Hospital in a few days. Was there something we could do until then?

I called the diabetes hotline at the hospital.

Me: "Uh, Duuuhhh. I am an idiot mother who didn't verify the presence of my daughter's diabetes stuff when we left for vacation. Any suggestions?"

The hotline nurse was super helpful, and didn't even hint that I was a completely disorganized bag of moronhood.

I gave her my inventory list, and explained our financial limitations.

The plan became this:

1) Buy a new meter (cost: about $19).
2) Use the syringes to CAREFULLY remove the Humalog from the Luxura pen cartridges.
3) Inject insulin as needed.
4) At our appointment, request a new sample of a Luxura pen.
5) Resume life as if nothing had happened.

Considering that the alternative was driving home and back (a total of 5 hours), or missing our vacation, the proposed solution brought tears of relief to my eyes.

When we went to our appointment that week, our DNE scolded us mildly, and reminded us that using a pen cartridge in such a manner was less than ideal (apparently the cartridges are very fragile), but was in good cheer when she saw that we kept M's bg in check.

This year's Manomet trip was also fun. Especially since, being an emerging adult, M was very self-conscious about making any mistakes.

In addition to guessing what her blood glucose reading might be, we had the additional challenge, unbeknownst to me, of not having enough insulin or test strips.

M revealed her secret when she could no longer keep it: the day her insulin would run out (also the day that I learned that she was not testing her bg levels).

The solution was two-pronged.

I made some calls to the local pharmacy, who transferred M's Humalog prescription to Manomet.

We used the old meter that M had packed with her corresponding test strips as a back-up. This meter did not automatically communicate with her pump. She tested her bg on that meter and plugged in the numbers necessary on her pump.

It wasn't until she reminded me about last year, that I understood her trepidation about sharing her mistake.

She said to me, "Mom, maybe YOU should pack my diabetes stuff for me."

But she's not getting off that easy.

I said, "No, but the next time you go away, I will double check that you packed what you think you packed. As a young adult, you need to pack it yourself."

M nodded in agreement, and the rest of the car ride went smoothly.

She is going away on a Catholic retreat this weekend. She has already made her D-list.

She has checked it twice. And so have I.

 

And a whole bunch of diabetes stuff....

Killjoy

So the first thing I want to say before I tell this story is that diabetes is the killjoy here. Not Auntie Jeanne.

As a Spanish teacher, it is wise for me to periodically visit a Spanish-speaking country so that I can keep my knowledge fresh and up to date. This year, I went.

Which meant that, since Daddy has to work all day, M was to be left to her own devices for 11 days.

Auntie Jeanne saw the opportunity to spend some quality time with her goddaughter and seized it. The two of them chose to go zip-lining and generally hang out for a couple of days.

Now Auntie Jeanne is a medical professional, and has been asking me good questions about M's diabetes from the start. She files this information away for future use.

But then it comes back to haunt her.

Things that Auntie Jeanne remembers include:

1) M does not do as well managing her diabetes on the road as she does at home
2) M needs frequent snacks when doing physical activity
and for carb absorption:
3) Foods with fat and sugar in them are better than foods with just sugar in them

After a long day of swimming and running around, M informs Auntie Jeanne that she is hungry and would like a snack [2) M needs frequent snacks when doing physical activity]. She states that she would like some ice cream [3) Foods with fat and sugar in them are better than foods with just sugar in them]. Auntie Jeanne agrees and decides to take her to the local ice creamery for what she anticipates will be a small dish of ice cream.

When they arrive at the the ice creamery, M peruses the menu and decides that perhaps she would like a hot fudge sundae. "Uh-oh", Auntie Jeanne thinks, "3) Foods with fat and sugar in them are better than foods with just sugar in them."

But as M continues down the menu, she decides that she will have a milkshake. "Hmm," thinks Auntie Jeanne. "That's more ice cream than I'd like to see her have, but 3) Foods with fat and sugar in them are better than foods with just sugar in them."

As they continue to wait in line, M declares that she would like to have a malted milkshake.

Now up until this point, all of Auntie Jeanne's misgivings have gone unspoken. She is the fun Auntie. The one who lets M do stuff she doesn't always get to do at home. Sometimes "stuff she doesn't do at home" includes extravagant food choices, such as having shrimp for breakfast, lunch, and dinner.

But the word MALTED catches Auntie Jeanne's attention. She thinks, "What is malt, exactly? And why does M want it?"

So she breaks her silence and asks, "So what is malt?"

M says, "It's a thickener. It makes the shake taste really yummy."

Jeanne's brain processes this information. It seems to her that malt is some kind of grain, which means added carbs, which means that the rule of small numbers is likely to be broken, which means that M's bg could become pretty high, because 1) M does not do as well managing her diabetes on the road as she does at home.

Auntie Jeanne thinks about this to herself, and makes no comment to M. After all, M is supposed to be having fun. On the other hand, Auntie Jeanne is responsible for M's general health while M is in her care. On the other hand again, M is a surly teenager, and at times grows frustrated when others tell her how to manage her diabetes.

Auntie Jeanne hems and haws about whether to let M know about her concerns.

M interrupts Auntie Jeanne's thoughts. "Do you think I should get the malted milkshake, or just a regular milkshake?"

Auntie Jeanne, relieved, says, "Well, since you brought it up.... I think you should have the regular milkshake, because I think it will be lower in carbs."

M looks at Auntie Jeanne and sighs. "Yeaaahhh. I know." She sighs again.

Auntie Jeanne, feeling badly, says, "Sorry, but somebody has to be the killjoy ."

M says, "Yeah, I have a lot of those in my life."

No, M.

A lot of people have those in their lives. But you have a super-extra-annoying one, that most kids don't. While some girls your age forgo the malted milkshake to avoid packing on extra pounds, you have to do it to keep yourself from getting sick.

Good for you for recognizing the smart thing to do.

Good for you for asking Auntie Jeanne to verify what you already knew.

And good for you for making the better choice.

And nobody is sorrier that you had to make that choice than I am.

Except maybe Auntie Jeanne.

Diabetes: the ultimate killjoy.

A malted milkshake, hold the malt.

Flying solo

M made her first no-joke solo travel attempt this week. She had to fly from Indiana to our New England state all by her little lonesome.

Once her flight took off, I received a call from her grandmother.

"She's on her way!" she said, cheerily.

"How was security?" I asked. After all, not only was this M's first solo flight, it was also her first flight with a pump. I remember being behind someone with a dialysis machine at airport security right after 9/11. Needless to say the experience was less than pleasant for all involved.

"It seemed fine. We could have escorted her to the gate, but she said that she could do it herself, so we watched her go through security, and it seemed to go just fine."

Well, this sounded like good news. When M received her pump, she also received a medical device card that says, "I am wearing a required medical device prescribed by my physician" and includes general information about what to do if she acts peculiar.

Just what constitutes "not peculiar" for a teenaged girl, I would like to know.

After a few hours, I went our local airport to retrieve M. Aside from looking about a foot taller (a common side effect of gaining valuable life experience), she looked great.

I asked her about airport security.

She said it was fine.

She didn't have to remove the pump. She did have to go through the metal detector. Then she had to have her hands swabbed with a cotton ball. The cotton ball was then tested, presumably for explosives, and she was sent on her merry way.

She thought that whole thing with the cotton ball was weird, and nobody explained it to her until I gave her my theory at home.

But it sounds like the TSA gets the whole insulin pump thing, which made M's life easier and less stressful.

So, yea! My baby's home!

Who has an embarrassing mommy who loves her? You do! That's right, yes you do!

Travels with Daddy

M got to go to New York City last week for her 8th grade class field trip.

Gee, for my class trip we went to the coast of our own tiny state, and went deep sea fishing for a day.

The students and teacher planned out their destinations, and readied themselves to go. They would visit Ellis Island, the Statue of Liberty, the Empire State Building, the Museum of Modern Art, NBC Studios, and see a Broadway show. Bill and I decided that one of us should go, too. But not because we love spending time with hormonal young people.

M's tiny Montessori school has no nurse. It seemed only fair to the director of the trip for one of us to chaperone so that we could relieve her of the care and responsibility for M's type 1 diabetes. After all, she had plenty of other normal children with normal issues going on the trip. Her hands were already full.

After a heated round of rock, paper, scissors, it was decided that Bill would hang around with 8th graders for three days, and I would drive the 500 miles (one way) to pick up our son from college.

I am not sure who got the better deal.

Bill tells me that all went well. That M's bg was pretty steady. He also told me that he was surprised and dismayed by the number of carbs she ate, but he felt that he couldn't argue with success.

The secret was walking.

They walked everywhere.

And it seems that, as long as M is moving, she can eat nearly anything.

Nevertheless, I was not thrilled to find a foot long plastic pixie stick straw (empty) in her laundry pile at the end of the trip.

Bad diabetic, M. Bad, bad diabetic.

Ahhh, pixie stix. Just like I remember them!