Putting Carb Counting Skills to the Test with Delicacies from Ghana

When you’re a type 1 diabetic, or the mom of a 10-year old type 1 diabetic who really couldn’t care less at this point in her life (and, really, why should she have to?) you know that its all about the numbers game. Numbers swirl through your vision, day in and day out, and at night you dream of them. High numbers (bad), low numbers (badder) and numbers that are sheer perfection, though achieved only after herculean efforts.

Yes, we look at numbers incessantly. We hear someone blurt out a number, totally out of context, and we think “Ooops, that’s bad.” We see a food – a banana, a stick of gum, a bowl of fried rice and right away, we’re trying to guestimate carbs.

That’s the worst part, for me; the carb counting. Or in my case, the carb guessing. A nutrition scale is part of our arsenal, so it’s not all a hypothesis. We bought ourselves a Salter 1450, a nutrition scale par excellence, with all the bells and whistles and a few thousand foods on its vast data base. If we lived in the U.S., it would be ideal.

As we don’t live in the U.S., it’s a little less so. Alex has been living here in Ghana for as long as the rest of us, since early 2004. But in her case, that’s the majority of her life. She’s grown accustomed to local foods, and will often eat them in favor of my own homemade fixings. Alex would rather eat banku and pepper than mashed potatoes. She’d take a bowl of gari soakings over a bowl of oatmeal, any day. Give her a ball of kenkey and some one man thousand (incredibly tiny smoked fish), and she’s in heaven. Kelewele, abolo, red red, waakye, fried yam and shitor get first preference. 

Tilapia, banku and pepper

Dried gari and gari soakings

Fried yam with shito

Kelewele

Abolo

Ga kenkey and pepper

Waakye

Red red

 

Those things, tasty as they are (and mostly, they are) are NOT on the Salter database.  So Alex’s ingestion of any of them is more often than not a guess at what I think might be a fairly good substitute, nutrition wise. Kenkey is made from fermented corn dough, so polenta is a good substitute. Banku is also made from corn dough but often with pounded plantain or sometimes cocoyam, so polenta is as close as I can get. Gari is ground, dried cassava, so tapioca beads work as a good approximation. Plantains are the only “local” dish on the Salter scale, but I have to consider how it’s cooked, with minced ginger and pepper spice, and fried in a giant vat of oil.

Community 1 market

Local foods are not pre-packaged; they’re purchased from a stall at the local market, often wrapped in newspaper. Sizes and quantity often vary from one day, and one seller, to the next, so never can we assume that what “worked” yesterday will work today. Believe that, and you’re equally as likely to be chasing a high as you are fighting a low.

So, next time you want to complain about carb counting and crazy numbers, even after you've search your Salter, or checked your Calorie King, think of us here doing our best guestimating. 

*This* Artificial Pancreas Gets A Fail

Earlier this week, the JDRF – the Juvenile Diabetes Research Foundation – took out a huge nearly full page ad in the Washington Post and the New York Times. A gorgeous little girl stared out, and the caption read “1 in 20 people, like Piper, will die from low blood sugar.”

1 in 20. That’s a startling statistic. More than startling, heart-wrenching. I have nearly 300 Facebook friends all of whom have a child with type 1 – does that mean I will cry for 15 children whose lives will be cut short by diabetes? Or will I… no, I can’t even think of that right now.

The advertisements were not to raise awareness of type 1 diabetes, per se, or even fund raise, which JDRF is incredible at, but rathre it was to – in some crazy, somewhat roundabout way – encourage/coerce the Food and Drug Administration to move quicker on approval for the JDRF’s pet project, the Artificial Pancreas, a computerized, closed loop system which integrates an insulin pump system and a continuous glucose monitor. Essentially (and very basically, I know I'm missing the finer points), the AP would dispense insulin in response to blood glucose needs, no human interaction needed. Well, almost, you know what I mean.

Now, quite a few parents are not as happy with JDRF’s new direction as JDRF would like them to be, and I can certainly see why.

Incredible as it might be for an individual with type 1 diabetes to not have to worry about the mechanics of blood sugar control, which would be taken over by the AP, those individuals would still have type 1 diabetes.

I watched an incredible video the other day, which followed a group of children in Israel who were all given the opportunity to test drive the artificial pancreas. It really is heart-warming to watch it, though I must admit that the little girl who said that diabetes took up half of her life saddened me. A lot.

At the end of the video, all I could think of was cool. If I had an AP for Alex I would love it. Even if it meant she had electrodes coming out of her little body and was hooked to a laptop computer strung off her back in a laptop for the rest of her life.

And then I thought to myself, is that you really want for your daughter? To be physically tethered to a machine for the rest of her days? That’s not a real life. She’d still have type 1 diabetes.

Low blood sugar. It is an anathema to we type 1 parents. It’s scary enough during the day. We scurry for juice, glucose, anything to bring our child’s bg up. Today we hit a nauseatingly ugly 35, with 1.75 IOB. It wasn’t pretty. Alex dropped down onto the coffee table and wailed “I’m low.” No need. I could see that, shaky and pale, with tears welling up and spilling over. Good grief.

An artificial pancreas? Forget it, she’s got one already and it sucks. I mean, I just nearly killed her.

I’ll just wait. I’ll take one cure, please, thank you.

Got insulin? It does a body good!

Day 3 of Diabetes Awareness Month and I have something to tell you. I like insulin. In fact I love insulin. You probably do too, and you don’t even know it. Ah, who am I kidding? Anyone who reads this blog knows all too well all about insulin. But just in case some poor misguided creature stumbles upon this post, I’ll elaborate.

Every body starts off with a pancreas which makes the hormone called insulin. Insulin helps to convert the food you eat into the energy that you need. Every day, a fully functional pancreas will perfectly do just that. Mine does, so does Sean’s and Mike’s and Sly’s. But not Alex’s. Alex’s pancreas is defunct. Up until early 2008 it used to be funct but now, no longer.

As far as organs go, the pancreas – when it’s working – is a superstar, and an ugly one at that. It's the Steven Tyler of body organs. In truth, I think it kind of looks like a turd. Yes, that’s it, a shitty turd; at least Alex’s is certainly that.

But it’s the insulin that is critical to one’s existence. And because Alex’s pancreas, defunct as it is, doesn’t make insulin we have to get it into her body some other way.

Manufactured insulin is the genius of two individuals; Drs. Frederick Banting and Charles Best. It was 1922, and the two docs, with a whole host of others, teamed up to discover the miracle that is insulin. It’s a long, interesting story, but I won’t tell it here but you can find it here. Suffice to say that the pair were awarded the Nobel Prize for Medicine for their discovery, and they have my eternal gratitude.

Insulin was basic, back then; it only came in a single flavor. Now we have several different kinds; fast acting, short acting, long acting, intermediate acting, and combination of two. Some parents, incredibly talented mixologists, take it a step further and combine three different kinds of insulin at once, to minimize the number of shots their child must take in a day.

 

The fully functioning pancreas is amazing; it knows exactly how much insulin to spurt out in response to the food a person consumes, and it knows exactly when to spurt it out, too. All foods digest differently and the pancreas knows this. Me, as the pancreas-by- proxy, doesn’t do anywhere near as good a job. Even though we can approximately calculate how much insulin Alex might need under a given scenario, it’s still a crapshoot.

Insulin has saved many, many people since 1922; before that, they died a slow – an agonizingly slow – death. Starved of food, robbed of energy, truly skin and bones. Don’t believe it? Get a load of these before and after pictures of a child diagnosed with type 1 diabetes and then a few months after beginning insulin injections.

 

Incredible isn’t it?

And it’s pretty much like that for our children, too. The transformation is awesome.

Back then, insulin injections were done using a reusable syringe that had to be sterilized by boiling, and occasionally sharpened by hand with a whetstone. The needle was terrifyingly long. I can’t imagine how many children with type 1 cried at the sight of it, and how many parents inwardly wept every time they had to hurt their baby with another shot of this precious liquid that would keep them alive.

Today, we have much better delivery devices. Insulin syringes come with needle tips that range in size from 5/16” (or 8mm) to 1/2" (or 12.7 mm). For people who use insulin pens – handy devices that hold a cartridge filled with insulin and have disposable pen caps –the needle size is even smaller, only 3/16” (or 5 mm). They still hurt, of course,  how could they not? But far less than the syringes of yore.

Alex started off with syringes – in the “business” we call it MDI for Multiple Daily Injections. Now, she uses an insulin pump, a battery-driven, life-saving, incredibly expensive, incredibly wonderful little computer.

For a type 1 diabetic person, it’s their life support system.

About the size of a cell phone, the insulin pump connects to Alex’s body through a long, skinny plastic tube, at the end of which is a tiny cannula that is inserted just beneath her skin. Insulin flows from the cartridge stored within the pump’s housing, at an amount and rate set by the individual, in this case, me. Alex knows better than to fiddle with the settings, because just as insulin gives her life, it can take it away just that quickly. But I won’t go there just now.

The insulin pump has been around for years, but manufacturers are working hard to make it as small and efficient as possible. Some of the newest ones are now tubeless. Alex’s Ping is not tubeless but it is remote controlled. How cool is that?

Way cooler than this, right?

 

That’s an insulin pump, circa mid 1960s, held about a gallon of insulin. We’ve come a long, long way.

This blog post has dragged on long enough; obviously I can’t say enough about the miracle of insulin. But I will leave today’s post with a final few words:

Insulin Is Not A Cure!!!

A Night in the Life of a T1 Mom: Musings on Vampires and Angels

 

Day 2 into November’s Diabetes Awareness Month and I’m beat already. And yet last night was a good night. Before going to bed last night at 9:00, Alex’s blood glucose levels was a quite respectable 75 mg. We aim for a range between 70 mg and 140 mg and this was perfect. Except it wasn’t, not before going to bed, and not with .42 units of insulin still worming its way through her body as it worked its magic on the pasta and chicken she ate for dinner.

No, 75 mg is not a good going to sleep number, so I had her take a slug from the juice box that I keep handy alongside the bed. A “slug” can’t be quantified so I’d estimate she drank about 4 ounces, enough to prop her sugar up enough during the overnight hours, or at least until 2:00 a.m. when I wake up to check.

Now, some parents of children with type 1 diabetes have been told that there is no need for an overnight check. But I can tell you that the few parents who choose not to wake up and check their child’s glucose level are truly in the minority. Perhaps I am overly cautious, but I am like a fanatical vampire feeling the need to wake up and draw blood from an innocent. And so, I wake up every morning at 2:00 a.m. and do the T1 mom's blood sucking thing. 

I think in the 1228 days that Alex has had diabetes I’ve slept through four alarms. I remember distinctly because I still feel guilty about them, and I thank the guardian angel (Dad, I know it’s you, thank you. I love you!) for keeping her safe.

Woe to the parent who sleeps through the 2:00 a.m. check, because the guilt can eat you alive. Just ask the mom (a Facebook friend) who,the night before last, slept an extra 30 minutes – right through an alarm which kept right on buzzing – only to find her too sweet daughter clammy and pale, and her blood sugar at a heart-stopping 39 mg with nearly 1½ units of insulin still kicking. The guardian angel at work again. And yes, we all know in our heart of hearts that shit happens, that we're only  human, blah blah blah, but that doesn't negate the angst or guilt.

And here's the reason why; I can also give you the names of at least three heartbroken moms who know all too well the dangers of somnambular hypoglycemia – a low blood sugar while sleeping. I may have just coined that term, but nocturnal hypoglycemia is too limiting. It’s not as though our children are any safer napping in the daytime.

But Alex’s 2:00 a.m. check was good; 159 mg – slightly higher than I’d like but not worth “fixing” and likely a direct result of the aforementioned unquantifiable slug of juice. But that’s how it goes. Her 5:00 a.m. check was a very nice 89 mg – not too high, not too low. Just right.

Oh, that it all her bg numbers could be that perfect. But I can dream, can’t I?

November is Diabetes Awareness Month, and We're Celebrating A Life Lived

Today is the first day of November. You might say no biggie and it isn’t, unless you happen to live with a person who has type 1 diabetes, or any type of diabetes, for that matter. And of course, I do; my sweet 10-year old Alexandra was diagnosed with this mind-numbing,  exhaustive, unpredictable, totally effed up disease a little more than three years ago.

November happens to be Diabetes Awareness Month, so, let’s dispense with the pleasantries, shall we, and become aware. Every day, in honor of Alexandra, I will throw a little something at you to get your brain juices flowing, to perhaps provide you with an "I didn't know that" moment. And if we spark a little empathy along the way, we'd appreciate that, too. Misery loves coompany.

Question #1

Were you aware that Type 1 Diabetes is an autoimmune disease?

That’s right! It’s an autoimmune disease; that means when Alexandra was just a cute, scrappy, scrawny 7-year old, her body turned on itself. In the case of people with type 1 diabetes, the pancreas is the scene of the destruction. No one knows why it happens, it just does.

Oh, were you living under the delusion that my child did this to herself. Or worse, that I helped her to become a diabetic by plying her with candies and sweets, and forcing the television remote into her little hands and leaving her to become nothing more than a human sloth?

Nah, not me. Believe me if I had seen this thing coming, I’d have sold my soul to the devil and offered myself up instead. Let me repeat: No one knows why type 1 diabetes happens, it just does.