World Diabetes Day: The Day When Bush Doctors aka Quacks Also Get their Say

Yesterday was World Diabetes Day, and I “celebrated” it as I have done now for five consecutive World Diabetes Days much as I have always done, i.e. by waking up and checking Alexandra’s blood sugars. On this particular day (night) she was 53 at just after midnight. Not only not a good number for sleeping but downright dangerous so I shook her awake and sat her up and gave her three glucose tabs to chew up. About 15 minutes later she was still only at 60 so we followed the tabs with a couple of marshmallows (obviously, our house was juiceless since that is the go-to for a low but a mom does what she has to). But I digress. After her blood sugar crept up sufficiently I went back to sleep, but woke up twice more before my regular 5:00 am alarm to double check. You know diabetes is such a frigging insidious disease that we don’t play with it because it just doesn’t play fair.

The world was ablaze with pictures of buildings, monuments and skyscrapers awash in blue in honor of World Diabetes Day and there were plenty of new profile pictures on Facebook – pictures of hands with the word “hope” written, moms and dads and kids dressed in blue in support of all of the world’s diabetics. This was my profile pic on Facebook. And I wore my “CURE” tee shirt from the Diabetes Research Institute. 

Ghana is holding a 2-day long Diabetes Fair in Kumasi (though I wished it was in Accra because I would have attended) and I expected that that might be the end of the media attention. However, I was to be pleasantly surprised; I was traveling in a taxi to the grocery story and the driver had on a local radio station. Now what was being discussed was not clear to me since it was a tribal language and I unfortunately know very few words (well, I do know quite a few insults, like I know how to say you’re a fool, or ask if you’re crazy but that’s doesn’t get you very far). Anyway, the radio was playing and the commentator was talking when all of a sudden I heard these words… Canadian, Nobel Prize, Banting and insulin! Now I knew what they were talking about and it warmed my heart in a kind of bittersweet way.

Information, the right kind, was being spread. It was nice.

Then I got home and Googled Ghana and diabetes as I occasionally do and came upon an article written on Ghanaweb about pledging to take steps to fight diabetes. All in all it was a well written piece but as usual it failed to differentiate between type 1 diabetes and type 2 diabetes. Naturally, I was miffed, so I shot off a hurried comment about how it would have been nice if this medical professional could have explained how type 1 was an autoimmune disease, not preventable and currently without a cure. I said that he was perpetuating the misinformation that we are constantly living with, that my daughter’s diabetes was preventable and curable, and that lifestyle changes would be sufficient.

In his defense, the article’s author, Dr. Kojo Cobba Essel, replied to my comment and apologized, but that due to word constraints he couldn’t elaborate. He said he hoped to write another article specifically on type 1 diabetes. Then he also acknowledged my pain. Wow. That more than anything lifted my heart.

Unfortunately, there is also the response of another “doctor” though I believe that that is merely what he calls himself, as in “Bush Doctor.” And he had an awful lot to say, about how I could have prevented my daughter’s type 1 diabetes and how I could cure it with dietary changes, such as Moringa powder, flaxseed, aloe vera, tiger nut milk, avocado, etc.

Apparently you toss it all into a nice clean blender, whiz it around for a bit and in minutes you’ve got the cure for type 1 diabetes.

Now, why didn’t I know that?!

Of course, I couldn’t let that go. My response was he would basically have me kill my daughter if I gave her only that and that the only thing keeping her alive is insulin, the gift of Dr. Frederick Banting whose birthday we celebrated yesterday during World Diabetes Day.

There were some other things I said and he responded in kind.

It was all kind of funny until I realized that some people here in Ghana might read this and think it’s for real. Some people who are type 1 diabetics themselves, or have children or loved ones that they care for. They might actually lay down their Lantus pens and put away their syringes filled with Mixtard or Humalog or NPH or whatever it is that the “real” MDs here are now prescribing. I’m truly afraid that they might actually believe him.

So I sicced the DOC on him.

The DOC, the Diabetes Online Community, my friends.

Well, I don’t have to tell you what transpired because you can read it for yourself here. And if you have a mind, please feel free to offer your thoughts and comments to the good “Bush Doctor.”

Oh, and if anyone was wondering….

Wo Nim Se Wo Ye Kwasea Paaa!                  You know you are a real fool!

W’abo Dam!                                                   You are mad!

Wa Gimi Paa!                                                  You are very stupid!

Growing Up Right

After four plus years of playing the role of pancreas-by-proxy for my daughter Alexandra, I thought I’d seen it all but I was in for a surprise. My friends on Facebook know what I’m talking about; they’ve seen my many laments about insanely crazy overnight high blood sugars that refuse to fall in line despite a quart of insulin. I’d have better luck just saturating the mattress with her Humalog and hoping that osmosis will do the trick. It’s puberty. I guess my baby can’t stay my baby forever.

Other parents with daughters of a certain age I am sure share with me that bittersweet moment when they realize that their baby is growing up. For them I’m sure it’s the first few subtle signs –hair where there used to be none, the newfound need for a size 28AAA bra to cover tiny bumps, the promise of long, lithe limbs which are just now at the awkward, gangly stage.  We won’t even go into the attitude adjustment now that Alex is a pre-pubescent tween.

It’s apparently a lot of work to grow up, and the body is a magical thing. I think I would find it much more magical if I weren’t too keenly aware of how hard it is. I want to be awed by the magic, damn it, not exhausted by it.

But parents of daughters (and sons to a slightly lesser extent) with type 1 diabetes who are going through puberty know first hand how hard the body is working to mature our child, to make them ready for adulthood and to eventually procreate (oh God did I just write that?!). We parents of T1 kids see it in elevated blood sugars, a side effect of the growth hormones which makes blood glucose much more resistant to insulin. I’ve had nights where I couldn’t budge Alex’s sugar out of the high 300s and even 10 units of insulin (quite a lot for a 75 lb girl) didn’t ever bring her blood sugars in range.

Only daybreak did. You know that very typical remark about growing kids? Goes something like this, “My goodness! It looks like you’ve shot up over night!” It’s true. It does happen overnight, and it can be overnight for three or four nights in a row. That’s three or four nights when I’m losing sleep and up every three hours re-checking and bolusing and dwelling on how much worse it would be if I didn’t do these things. I can’t even begin to imagine what Alex’s A1C is going to be – I might just forego doing the A1C until she’s 18 or so.

What’s most frustrating is that the first night you get those high numbers you wonder if it couldn’t be food related or perhaps an illness coming on, so you just do your normal thing and hope for the best. Then the second night you think to yourself, okay it must be puberty so maybe what I’ll do tomorrow is run a temp basal. That seems to work for day 3 and you’re content because you’ve been able to keep her sugars down a bit (still not ideal but 180 is way better than 380!) though now you’re up every two hours checking just to be sure. And then on day 4 your 2:00 am check finds a low. Oops and ugh. Guess this growing body is taking a breather.

Then a week or two later it starts all over again.

It’s maddening.

So let me tell you about our summer. It was wonderful. We went to N.J. for the month of August to see our family, and stayed in a lovely little cabin just near Six Flags. We had bought season passes for a ridiculous amount of money but certainly got our money’s worth since we were there nearly every day for a few hours.

Now, I like amusement parks and in my younger days when Six Flags was just Great Adventure I did all the rides including the roller coasters like Lightening Loops and Rolling Thunder. Well Lightening Loops is long gone though Rolling Thunder still hanging in. But the park’s main attractions are the big boys, Superman – the Ride, Batman the Dark Knight, Bizarro, Nitro, El Toro and of course, the king of all roller coasters in the whole wide world, Kingda Ka.

I am no coward but neither am I a nut.

But I am a parent and before I’d let my 11-year old daughter go on any of these rides I had to “test” them out first. Maybe I am a nut after all. But I wanted to see how they were, and assess whether or not I thought my daughter could handle them. In the end I got up the nerve to ride them all except Nitro (I absolutely must have shoulder harnesses to hold onto!) and Kingda Ka (just no and after I saw the picture of my two sons riding it the answer is still no, and that goes for Alex, too).

The rides can be scary for any kid but the adrenaline rush for a type 1 kid could really mess up a blood sugar – in either direction.

My husband and I tried our hardest to be crazy careful; we checked her blood sugar before she went on a ride, we made her carry glucose tabs in her pocket or the pocket of whomever was with her. There was always a soda or a juice box waiting. But still we made mistakes, all of us.

The first time was when Alex was riding on El Toro with her brothers and cousin; it was night time and they had just been on it once (for the first time ever for Alex and her cousin) when they dashed back to say they were going on again. I pulled Alex over for a quick recheck. She was 50 mg, with some insulin still in her system. Not a number good enough to go on any ride, much less a roller coaster with a 176 foot drop and g-forces of 4.4. No.Friggin.Way.

But Alex was desperate to go again before the park closed in 10 minutes! Here’s how it played out; she gulped down a whole bottle of coke and chewed 2 glucose tabs while her brothers and cousin stood anxiously by (it looked like the four of them were in dire need of a bathroom, they were jiggling so much with impatience). An 80 mg was the best I was going to get if they were going to be on the ride, so off they raced with glucose tabs in one of Sean’s pockets and a juice box in the other. I followed to the picture booth where they take snapshots of all the riders as they take plummet at 70 miles per hour. There was Alex and her crew – screaming wildly and grinning their heads off, with their hands in the air. With their hands in the air?!

Insanity runs in our family apparently.

We had one more run in with a crazy blood sugar at the amusement park and it was not good (I know, are they ever?). We had waited in line to get on Bizarro, another crazy roller coaster with a lot of inversions. I was waiting with my niece Natasha, Alex and Sylvester; the boys were somewhere behind us. Our ride was next, maybe 2 minutes more of waiting when Alex says she doesn’t feel well and Sly offers to take her off while I ride with Tasha. He and Alex head for the exit ramp. I look down then look up again a moment later and Sly is carrying Alex in his arms her head is slumped on his shoulder.

I’m still trembling as I think of this. He said her knees had buckled and she was on the verge of passing out, so he grabbed her and carried her down the 4 flights of metal steps to the ground. I ran behind with Tasha in tow – Sean and Mike had no idea and were still ready to go on the ride. We sat Alex on the ground and I checked her sugar with quaking and shaking hands while she drank the Coke her step-brother Jules had just run for. She was as white as a sheet, but she wasn’t low – a rebound? I don’t know; we had checked her before we got on the ride but we did have to wait a while so maybe the heat of the day and anxiety conspired? I still don’t know. I do know that I never want to see my husband having to carry my daughter in his arms again like that. Ever. But I am also ever so thankful that he did and that he was there with us. In a theme park surrounded by the “heroes” that I grew up with – Superman and Batman – they couldn’t hold a candle to my husband on that day.

Did that episode stop Alex from going on her rides, or me from letting her? Of course not; as we T1 parents always say, our kids can do anything that any other kid can do. And I’d be doing Alex a grave injustice if I treated her differently just because she’s got type 1 diabetes. She’s still a kid, a growing one, but a kid nonetheless and it's my job to make sure she does it right.

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.

This much, I can do

I know that this tends to be a recurring theme of mine, but I can never ever hope to repay the many individual kindnesses that my sweet daughter is currently reaping the benefits of. But I can do this. And not just for Alexandra, but also…

Abby, Adjoa, Aiden, Ainsley, Alexa, Alexander, Alli, Amanda, Amy, Andrew, Anna, Autumn, Ben, Beth, Boz, Brandi, Brendan, Brooke, Brynn, Caitlyn, Caitlyn, Caleb, Cam, Cassandra, Cassie, Cayden, Chad, Chell, Coco, Colleen, Connie, Connor, Dani, Daniel, Danielle, David, Dean, Deanna, Eilish, Elizabeth, Emily, Emma, Grant, Hailey, Hannah, Heidi, Holly, Ian, Jack, Jacob, Jacob, Jamie, Jayden, Jenna, Jenny, Jesse, Jimmy, Jonah, Jordan, Jordan, Josh, Joshua, Justin, Kailee, Kailey, Katerina, Katie Jane, Kayla, Kerri, Kevin, Kyle, Kyra, London, Maddie, Marissa, Matt, Max, McKenna, Melissa, Mia, Michael, Morgan, Nathan, Nicholas, Nick, Nicole, Noah, Owen , Rachel, Rae, Ray, Reann, Richard, Sam, Samantha, Sarah, Scott, Sean, Seth, Sevaun, Stephanie, Steven, Tasha, Taylor, Tessa, Tim, Tommy, Tony, Trent, Treston, Trey, Ty, Tyler, Tyler, Zac, Zane, and Zoe.

As well as all of the other children (even those now grown) who have already endured so much more than any child should ever have to and for the parents who must stand by and watch, both in heartbreak and in awe.

So, as of today, I have set up a recurring monthly donation of $100 to the Faustman Laboratories at Massachusetts General Hospital in honor of my too sweet girl, Alexandra.

I believe that Dr. Faustman gives us our best closest hope for a real cure for type 1 diabetes. And while it’s not a lot of money, every little bit counts. If you’ve got a little spare money, too, I’m sure Dr. Faustman can put it to good use.

Old news and some new thoughts

If you're already a follower of Too Sweet Girl in Ghana, then this is old news. I was recently invited to provide an essay for A Sweet Life's online diabetes magazine. It's an opportunity to raise awareness for what our T1 children go through here in Ghana that I just couldn't dismiss.

For the most part, that essay was well received by my family, peers and cyber friends. Most who responded know how difficult type 1 diabetes is to manage under the best of circumstances, and they were very supportive of my efforts, not only to keep my daughter alive and well, but to support the local children here as well.

But not everyone agreed. I received a series of four separate emails from a local (Ghana-based) “friend” (whom I’ve actually never met but who shall remain anonymous here), who was clearly appalled. My actual responses to her emails are in red, my thoughts (i.e. what I should have said) are in blue.

Email #1

Hi Barbara,
I read your artcle about your daughter. The love that you feel for her is overhelming. But I have to admit that if my daughter got sick, the first thing I would do is leave Ghana and go home. I think you are putting your daughter's life at risk by staying here. Lol

Anonymous Friend, thanks for your support. Lol :)

I think if we were in the states we’d be in worse trouble – without insurance who the hell can afford anything over there? At least here, the most important thing –insulin – is available and cheap, comparatively. And I’m truly blessed because I do have lots of moms and dads who help me keep Alex alive and healthy.

How’s things with you? Not going to the states anytime soon are you? I need an insulin pump brought in? ;-)

Email #2

Barbara,
I sincerely disagree with you. I wa single and I could afford blue cross and blue shiled. I also knew people less fortunate than me who had help thourgh government programs. The very fact that you need something from the US tells me in my opinion that you should go home.

I also need a White Castle hamburger but I’m not rushing for the plane!

I have never met you and tjerefore I think it isn't fair for you to ask me to get you anything from the states,

Did she not see the winking eye icon?

But id I were you and my child was sick

Sick? Alex is sick?

I would get my ass home asap.

Say what you really feel, Anonymous Friend.

If your daughetr were to get malaria

been there, done that – twice!

on top pf diabtes or any type f viral infection her life could be compromised,
I think that no child from any country should be brough here to be riased

Don’t you have kids with you, here, in Ghana?

especially a sick one, Lol

Oh, that makes your bluntness (some might argue rudeness) so much easier to accept.

Email #3

Hi Barb,
Did you have Alex through ivf?

No, none of my children were conceived through IVF, but what difference does that make?

I found that part of your story intriguing.
I was in richmond vA for three years, single and not well off. But I had blue cross and blue shield.

If you live in the U.S. insurance is a necessity – you can’t get prescriptions or visit a doctor without it. Here, I can walk into any doctor’s office or pharmacy and buy what I need, with cash in hand. One thing that’s important to clarify – people with diabetes or their caregivers see their doctor very very infrequently as it relates solely to their diabetes care. The burden, the onus,, the responsibility – 99.9% of the time – is on the patient or caregiver. In a year, we probably spend all of 6 hours in total with Alexandra’s doctor. The rest of the time, I am the expert. I make the decisions. Even Alex’s doctor has readily acknowledged that she doesn’t “live” with the disease as I do and defers to my decisions as regards her diabetes care.

I think that the US is better equipped than Ghana in helping all of its citizens when they are sick.

Obviously, you don’t read the CWD forums. You don’t know how parents fight with insurance companies to get the right insulin, to get adequate glucose strips, to get an insulin pump or a CGM. You don’t know how often they have to appeal the insurance company’s ruling. You don't know that they're struggling to meet ridiculous deductibles and co-pays. Don’t have private insurance there? Then you’re screwed. You’re at the mercy of Medicare or some other state run program. Maybe you haven’t heard but insurance companies and pharmaceuticals run the country there, and their goal is to maximize profits – it certainly isn’t to ensure that every citizen has quality healthcare.

I mean that sincerly in terms of quality of life and care.

Do you really not know what’s going on over there? Or do you live in a bubble?

I think the very fcat that you need an insulin pump from home speaks volumes.

Need? We don’t need an insulin pump. I want an insulin pump –who wouldn’t want the best for their child? But in the absence of one, she’ll go back to injections. She will still live.

Also they very fact that here your daugter is exposed to mopre viral infections and malaria.

What? The U.S. doesn’t have its share of infectious disease? Hasn’t you ever heard of the flu epidemic? It seems to occur at least annually there. Alex is one of the healthiest kids I know. Aside from the occasional cold she's never been sick, never been hospitalized.

I have to say I wish you all the best and good luck,
If it were me, I would be in a plane right now on my way home.

You’re not me.

PS,

I cannot wait to go home. I have lived in eight countries and thid place is the pits.

I can’t wait to go home either, I miss my mom. But bear in mind that not every city in the U.S. is better than Accra.

Email #4

I do not mean to offend you in the least, but how can you go from rich to poor and give your kids a better life or a life with more opportunities?

I never ever said I was rich, and what makes you think that life would be better there and there’d be more opportunities? I follow current events closely because that’s my job; the economy sucks there, unemployment is near 10% and property values are in the toilet. Here, we’ve got a house (albeit under construction) that we own outright with no lien. I’m working from home doing something that I like at a wage that is acceptable to us because our overhead is low. My kids are getting a good education and lack for nearly nothing (McDonalds, Chuck-E-Cheese and Dave & Busters excepted).

My husband is Swedish, but Sweden is not a third world country.

My husband is Ghanaian, and Ghana is an emerging market.

I have friends here who have brought their kids here from other countries and for the most part they all want to go back to civilization.

I have friends from civilized countries that have lived here, left and want to come back here, in spite of everything. They miss Ghana. You’re overlooking the good here.

This place is the most backwards place I have ver been to.

Again, you are overlooking the good here. You should have seen it twenty-something years ago. Ghana has accomplished great things in the last two decades and is improving regularly albeit slowly. You really can’t compare Ghana to a developed economy; that’s an unfair comparison.

Those emails came in fairly quick succession yesterday, but I responded earlier today.

Anonymous “Friend,”

Obviously you don’t know much about the nature of diabetes so that you are reacting (over?) from a place of ignorance. A person with type 1 diabetes needs only access to insulin and the ability to check their blood glucose levels regularly. The insulin pump that my daughter uses (donated) and the new one that she will be getting (also donated) are merely delivery devices – they make life easier and provide us with the ability to closer match her food intake and her insulin.

In the absence of an insulin pump there are other delivery devices including an insulin pen or syringes, and we’ve got plenty of those. As far as my “asking” you if you were going to the states – no offense, but I ask everybody who has a tie to the U.S., you’re not special. And I am not asking that question because I’m so desperate to have the pump to save Alex’s life. No, I’m asking for someone to bring it because I don’t trust the post office. Do you?

You don’t know our circumstances, so it’s really not your place to judge me. You’ve lived elsewhere in the world. Besides the U.S., I’ve not. I know there, and I know here. And I know there is better if you have insurance, but we don’t have U.S.-based insurance. Can we get private insurance if we lived there? Maybe, but at what cost. I’m 50, my husband is 59 and besides our other two we have one child with a chronic, very expensive disease. If we could get insurance it will cost nearly $2,000 a month. A month! You can buy an awful lot of medical services here in Ghana for that, and not necessarily at Korle-Bu.

We have Ghana-based insurance that lets us use medical services at 37 or Korle Bu plus some local clinics, that’s fine. If Alex falls very sick – and in three years, she’s the healthiest of all my kids! – we’ll go to Korle-Bu because I trust her doctor to do well by her. She’s already had malaria a couple of times, and coped just fine. Interestingly, I know when Alex is getting sick long before she exhibits symptoms because of her blood sugar.

As far as her diabetes care, it’s not rocket science, its just monotonous vigilance and it’s my job.

If Alex had a disease that couldn’t be well managed here then I’d find a way to get her out of here, insurance be damned. But for all intents and purposes, aside from having a chronic disease, she’s a healthy, thriving little girl.

Yes, Ghana is a backwards place. But it is my husband’s country and he is who he is largely because of being raised here. I won’t disparage it for its problems; only try to make it better. This country is my children’s legacy, such as it is, but I’m not ashamed that I live here. Granted, some days I want to tear my hair out and scream, but I’ve been coming back and forth to Ghana for more than 2 decades, and I remember how bad it was and know how far Ghana has come.

Returning to the U.S. now is not in our cards. We have family there, yes, all of whom have their own lives, their own problems, we visit when we can afford it. Our home is here, our lives are here. We’re not diplomats or expat employees of some international conglomerate. We’re “retirees” in effect, making do with pension, consultant and freelance revenues.

And here is where we’ll stay. I know you mean well, and you’re entitled to your opinion, but unless you walk in my shoes, don’t judge.

P.S. I can’t wait to go “home” (for vacation), either. As soon as I get $6,000 together.

Smart Pump, Now Smart Momma

It was last year that Alexandra started pumping. That was only thanks to the generosity of many, many lovely people who donated the incidentals needed to begin pumping, including the pump itself (a gently used Animas 1250), the cartridges, various insets and a whole host of other stuff.

We’ve used it faithfully, although inefficiently, for the past 8 months or so. And a recent scare had me thinking we’d be forced to go back to MDI but it proved to be a false alarm (at least so far, knock wood). There’s a slight crack near the battery housing, which has been crazy-glued and taped, and we’re now protecting it with a rubber skin to keep it compact. Fingers crossed it holds up for a good long while.

Now, I can’t speak for Alex – she’s a kid who really just goes with the flow – but I love the pump. But because I was learning to use it on my own (for liability issues, Animas declined to help train me), I was hesitant to go beyond simple boluses for the longest time, and combo boluses were only recently added to our repertoire.

In all that time, I never availed myself (I mean Alex, of course) of the ezBG or the CarbSmart features of the pump. Part of the reason for that is because we read blood glucose differently here in Ghana; it’s read in mmol, whereas everywhere else is in mg. The pump features use mg, too. And I just couldn’t trust Alex’s conversion or math.

But then I ran out of strips for the (mmol) meter we always use, and had to rely on one of the donated meters. I had passed out a great many donated meters to Alex’s doctor at Korle Bu Hospital, but I held onto these because this particular meter (Freestyle Lite) isn’t sold here, so strips aren’t sold here either. And I have (well, now had) lots of strips and I just hate letting things go to waste.

So, when Alex started her Easter break (which lasts here for an interminably long 3 weeks!) we started to use the Freestyle meter and the pump together. With the carb counting that we already do, adding a bg and having the pump tell us if she needs insulin or not is a no-brainer. This is so easy!

I know most other CWDs use their pump 24/7. But because Alex is untethered she doesn’t have to. She attaches only when she needs to for boluses. And I don’t have to worry about basal rates, either (though I do give her a little during school because she’s a chronic under-boluser).

I can’t believe it took me this long to figure it out. Better late than never, though, right?