Those of you who know me well know that I am one of those people who, as a child, was always in search and support of a good cause… I trick-or-treated for Unicef, raised money for “Jerry’s Kids” with Muscular Dystrophy by knocking on doors, walked 20 miles with Christine or Josie for a pledge of 10 cents a mile in support of the March of Dimes. As I grew older, I did my bit with United Way and Salvation Army, too. It seemed there was always some needy kid who I was compelled to help or research group to be funded. There was always a cure on the horizon for lots of horrific diseases and disabilities.
But I did that without any real personal involvement. I didn’t know any of those kids. I was sympathetic to their plight. But I had no had no real feeling for what they endured.
Now, I have a new cause. And this one I embrace with all my heart and soul and every single fiber of my being, because it affects my youngest child. Some of you may not know this, but a little more than a year ago, our daughter, Alexandra who was 7 years old at the time, was diagnosed with type 1 diabetes, or what used to be called juvenile diabetes.
Now, I didn’t know anything about diabetes. I knew Mary Tyler Moore had it, but couldn’t figure why it was called “juvenile” diabetes – certainly she was no juvenile. I knew diabetes had to do with sugar and sweet stuff, but I didn’t know anything else.
Boy, what a difference a year makes.
I’ve learned that type 1 diabetes is an auto-immune disease; that a person’s body basically attacks itself – in this case, the pancreas – and that nothing a person did or didn’t do could have prevented it. No one knows why some people get it and others not. The pancreas no longer produces insulin, a hormone needed to convert the sugar and carbohydrates you eat into energy.
Without insulin, plainly speaking, Alexandra will die. But insulin – as wonderful as it is – is not a cure.
The only cure is a cure.
But there is hope on the horizon, and it takes the form of Dr. Denise Faustman of Massachusetts General Hospital. Dr. Faustman has actually cured type 1 diabetes in lab mice, with an FDA-approved drug that is already on the market. The problem is, because the drug is already on the market and widely available, there’s just no financial incentive for the pharmaceutical companies to embrace Dr. Faustman’s efforts.
I won’t bore you with the details. Suffice to say it’s something I’ve researched, and I am more than hopeful that within my daughter’s lifetime there will be a cure.
But the cure won’t come without funding. The Lee Iacocca Foundation has contributed $10 million to jumpstart the human trials, and money is trickling in through grassroots organizations such as one I’m happy to be a small part of – Help Cure Childhood Diabetes.
So, if you’ve stuck with me this far and you knew me as a child, you know where I’m going with this… please help. Your donation toward research for a cure would be appreciated more than you can ever know. This link will take you to Alexandra’s web page and from there you can link to the donation page at Massachusetts General Hospital.
And if you just can’t make a donation right now – times are tough here, too, I understand – I’d appreciate your prayers instead.
With thanks from the bottom of our hearts…
Barbara and Sylvester
Thursday, November 12, 2009
Monday, October 26, 2009
Playing catch up
It is not easy to get back into the swing of things, once you’ve been out of the loop for a while. I’ve neglected this blog and no one except my Facebook and CWD friends have any clue what life has been like for us here in the jungle over the past couple of months. Mostly, it’s because it’s been relatively uneventful. That’s not to say that nothing ever happened. Because this is type 1 diabetes we’re talking about, and something is always happening.
June 25, 2009: RIP OneTouch Ultra 2 Glucometer
This is Alexandra’s 1 year anniversary of her diagnosis. Her meter – her very first glucose meter 2 – up and died on us that evening. (Ralph Nader would have had a field day with that fact, I think.) Oh, we tried to revive it; we changed the batteries, opened up a package of new glucose strips, all to no avail. It just would not work. C’est la vie, right? But, I couldn’t let it RIP, no way. It seemed to me that after only a single year, it should still be in good working order. I mean, we spent nearly $100 on that meter (sans glucose strips, by the way) and while I had other meters we could use, it was the principle of the thing, ya know? So I emailed LifeScan (which is a Johnson & Johnson Company) and complained. And what do you know, within two days I had a response from a local distributor. Yes, my meter was still under warranty and would be replaced. Whoo hoo! The identical meter is now back on our headboard. Bonus discovery! We found out that the distributor (Palb in Kaneshie) sells glucose strips to the public at GHC 50 for 50 strips. That’s good to know… and waaay cheaper than you can buy it anywhere else in Ghana.
July 27, 2009: Lantus trouble
We buy 5 cartridges of 300 units at a time, and I had opened one up that day, given Alex her shot and then noticed that already nearly 80 units were missing. Went to go get another vial, and there was no other vial! We were going through these things at an astronomical rate! Alex uses a mere 13 units a day, and even given an extra 4 units for the pen priming, there’s no way we could have finished 4 (and been on our 5th!) in only three months. So, silly old me, I email the Lantus people (Sanofi-Aventis). They put me in touch with the local distributor who agrees to replace the “missing” Lantus. I head out to the pharmacy with Alex’s insulin pen and the Lantus cartridge, and the representative comes down. He’s a nice young man just aching to help. Within a relatively short while, I’ve got two replacement cartridges and a new insulin pen (which doesn’t work for Alex, but that’s another issue). The nice young man also told me where I could find Lantus is Tema, so I don’t have to drive so far.
So, two complaints solved to my satisfaction. I was happy about that. I am not so happy to think about all of the other local people who maybe have suffered the same sort of problem but didn’t know they had any recourse.
August 20, 2009: Barbara learns a lesson
I hate to be on the last cartridge of insulin before replacing it. You just never know. I had just opened the next to last cartridge and remembered my new friend from Sanofi-Aventis telling me about the local pharmacies that stock it, so I hightail it over to the first one. They don’t have it, but say they can order it for me. It’s a rinky-dink little place, and I’m not all that impressed. For what it’s worth, I am a pharmacy freak – I love looking at bottles and packages and drugs and wandering up and down the aisles. This had none of that.
Then I head over to the other pharmacy that was suggested. Now, this is more like it! Bigger, cleaner, brighter, lots of drugs and a very nice pharmacist dressed up like a pharmacist! But they don’t have the Lantus in stock either, but they can order it for next day delivery! “What’s the price?” I enquire (knowing, of course, how much it costs me if I go directly to the distributor). Oh, well, they’ll have to see if the price went up but last time it was GHC 90 (I know it’s now GHC 95).
So here I am, naïve little me, thinking okay, even with a mark-up, it’s probably not gonna cost more than GHC 110. GHC 130! How’s that for a mark-up? Alex and I walk in the next day to pick it up and I almost passed out when he told me the price. I sputtered, “Wow! That’s some serious mark-up you guys put on this.” And the pharmacist (different one than the day before) says, “Really? We only mark it up 33% -- other pharmacies mark up 40%!” Um, I don’t think so. “Well,” I tell him, “we’ve got a problem, because all I’ve got is GHC 110.” The guy looks at me and says, “So what do we do?” I’m thinking, “What do we do? How about I walk out of here leaving you with cold insulin in your hands and I go to the distributor and save myself GHC 35.” I say, quite frankly, “This is all I’ve got, take it or leave it. I wasn’t expecting a mark-up like that and I can’t afford it.” He’s clearly not happy, but he either sells it to me for that price or it sits in his fridge… I mean, what’s he gonna do, hold Alex for ransom?
Long story short, he calls the other pharmacist who agrees to mark it up only 10%. Barbara learns her lesson: Cheaper to buy directly from the wholesaler, all things considered.
October 12, 2009: The Humalog Dilemma
Alex also needs Humalog; it’s a fast acting insulin and is one of the primary weapons in the fight against high blood sugar. She was running low (I sheepishly admit it, she was down to her last cartridge), so I called up the pharmacy who distributes this and was told that they have it in stock. I draft a letter and pull the money out to buy it and send our taxi driver, Ekow, to the pharmacy in Accra.
An hour after he leaves me, I get a call from him. He’s at the pharmacy and they have the Humalog but it expires 10/09. Note to self: REMEMBER TO ASK ABOUT EXPIRY DATE NEXT TIME! I get the pharmacist on the phone, and he confirms they’re out because all of their supplies have been sent to Korle Bu Hospital, except for this package which is expiring in three weeks. “Do I want it?” the pharmacist wants to know. Of course, I don’t want it! It’s for an 8-year old girl; she’ll never finish it all before it expires. The next shipment isn’t coming in until next year, I’m told. I call my taxi driver and tell him to forget it.
A few days later, I decide to drive to the hospital to find the Humalog, and Ekow takes me there. Supposedly, you’re supposed to have a prescription at the pharmacy, so like a good consumer I head up to find a pediatrician who can write one out for me, since Alex’s main doctor isn’t around. I find no one I know, but do find a surly doctor who looks down her nose and tells me to have a seat in the waiting room till she can get around to me. I’ve got little patience for beaurocracy, so within minutes I’m out of there.
I tried the first main pharmacy, and they’re willing to help me (after all, the universal language in Ghana is cash!) but they’ve not got Humalog; they’ve got Regular and Lantus (good to know for later, but right now I don’t really care) but no Humalog… maybe one of the other pharmacies on the hospital grounds. Off I go in search… after the third pharmacy, I’m starting to get frantic that I’ll not find this stuff and have to rely on Regular insulin. I spot one of Alex’s doctors walking around and she directs me to the Diabetes Clinic. Saddest place (well, next to the children’s wing) that you ever want to see. They’ve got Humalog, but with the same expiration as the one from the wholesale distributor. I am sincerely frustrated at this point. I head back to pharmacy #1 and buy the Regular, just in case.
I go online looking for commiseration from my CWD friends, and learn that it’s alright to use the expired insulin, because the pharmaceutical companies are usually very liberal in their dating, so that they don’t run into lawsuits and such. It’s not like on October 31st that the insulin will instantly self-destruct, it may just degrade over time. That news comes as a major relief to me.
So I tell my husband to pick it up from the pharmacy, after I confirm again that they’ve got it in store. This time, without my even asking, they advise me that it will expire at the end of the month. I tell them it’s alright, I want it anyway and that my husband will be there to pick it up later in the day.
You can imagine my relief when Sly came home that night and handed me a box of Humalog 75/25 Mix!!!! What! They screwed up the package in the pharmacy, and Sly didn’t think to check the box (and to be honest, I’m not convinced he’d have known that it wasn’t what I really needed, anyway).
Here we go again.
June 25, 2009: RIP OneTouch Ultra 2 Glucometer
This is Alexandra’s 1 year anniversary of her diagnosis. Her meter – her very first glucose meter 2 – up and died on us that evening. (Ralph Nader would have had a field day with that fact, I think.) Oh, we tried to revive it; we changed the batteries, opened up a package of new glucose strips, all to no avail. It just would not work. C’est la vie, right? But, I couldn’t let it RIP, no way. It seemed to me that after only a single year, it should still be in good working order. I mean, we spent nearly $100 on that meter (sans glucose strips, by the way) and while I had other meters we could use, it was the principle of the thing, ya know? So I emailed LifeScan (which is a Johnson & Johnson Company) and complained. And what do you know, within two days I had a response from a local distributor. Yes, my meter was still under warranty and would be replaced. Whoo hoo! The identical meter is now back on our headboard. Bonus discovery! We found out that the distributor (Palb in Kaneshie) sells glucose strips to the public at GHC 50 for 50 strips. That’s good to know… and waaay cheaper than you can buy it anywhere else in Ghana.
July 27, 2009: Lantus trouble
We buy 5 cartridges of 300 units at a time, and I had opened one up that day, given Alex her shot and then noticed that already nearly 80 units were missing. Went to go get another vial, and there was no other vial! We were going through these things at an astronomical rate! Alex uses a mere 13 units a day, and even given an extra 4 units for the pen priming, there’s no way we could have finished 4 (and been on our 5th!) in only three months. So, silly old me, I email the Lantus people (Sanofi-Aventis). They put me in touch with the local distributor who agrees to replace the “missing” Lantus. I head out to the pharmacy with Alex’s insulin pen and the Lantus cartridge, and the representative comes down. He’s a nice young man just aching to help. Within a relatively short while, I’ve got two replacement cartridges and a new insulin pen (which doesn’t work for Alex, but that’s another issue). The nice young man also told me where I could find Lantus is Tema, so I don’t have to drive so far.
So, two complaints solved to my satisfaction. I was happy about that. I am not so happy to think about all of the other local people who maybe have suffered the same sort of problem but didn’t know they had any recourse.
August 20, 2009: Barbara learns a lesson
I hate to be on the last cartridge of insulin before replacing it. You just never know. I had just opened the next to last cartridge and remembered my new friend from Sanofi-Aventis telling me about the local pharmacies that stock it, so I hightail it over to the first one. They don’t have it, but say they can order it for me. It’s a rinky-dink little place, and I’m not all that impressed. For what it’s worth, I am a pharmacy freak – I love looking at bottles and packages and drugs and wandering up and down the aisles. This had none of that.
Then I head over to the other pharmacy that was suggested. Now, this is more like it! Bigger, cleaner, brighter, lots of drugs and a very nice pharmacist dressed up like a pharmacist! But they don’t have the Lantus in stock either, but they can order it for next day delivery! “What’s the price?” I enquire (knowing, of course, how much it costs me if I go directly to the distributor). Oh, well, they’ll have to see if the price went up but last time it was GHC 90 (I know it’s now GHC 95).
So here I am, naïve little me, thinking okay, even with a mark-up, it’s probably not gonna cost more than GHC 110. GHC 130! How’s that for a mark-up? Alex and I walk in the next day to pick it up and I almost passed out when he told me the price. I sputtered, “Wow! That’s some serious mark-up you guys put on this.” And the pharmacist (different one than the day before) says, “Really? We only mark it up 33% -- other pharmacies mark up 40%!” Um, I don’t think so. “Well,” I tell him, “we’ve got a problem, because all I’ve got is GHC 110.” The guy looks at me and says, “So what do we do?” I’m thinking, “What do we do? How about I walk out of here leaving you with cold insulin in your hands and I go to the distributor and save myself GHC 35.” I say, quite frankly, “This is all I’ve got, take it or leave it. I wasn’t expecting a mark-up like that and I can’t afford it.” He’s clearly not happy, but he either sells it to me for that price or it sits in his fridge… I mean, what’s he gonna do, hold Alex for ransom?
Long story short, he calls the other pharmacist who agrees to mark it up only 10%. Barbara learns her lesson: Cheaper to buy directly from the wholesaler, all things considered.
October 12, 2009: The Humalog Dilemma
Alex also needs Humalog; it’s a fast acting insulin and is one of the primary weapons in the fight against high blood sugar. She was running low (I sheepishly admit it, she was down to her last cartridge), so I called up the pharmacy who distributes this and was told that they have it in stock. I draft a letter and pull the money out to buy it and send our taxi driver, Ekow, to the pharmacy in Accra.
An hour after he leaves me, I get a call from him. He’s at the pharmacy and they have the Humalog but it expires 10/09. Note to self: REMEMBER TO ASK ABOUT EXPIRY DATE NEXT TIME! I get the pharmacist on the phone, and he confirms they’re out because all of their supplies have been sent to Korle Bu Hospital, except for this package which is expiring in three weeks. “Do I want it?” the pharmacist wants to know. Of course, I don’t want it! It’s for an 8-year old girl; she’ll never finish it all before it expires. The next shipment isn’t coming in until next year, I’m told. I call my taxi driver and tell him to forget it.
A few days later, I decide to drive to the hospital to find the Humalog, and Ekow takes me there. Supposedly, you’re supposed to have a prescription at the pharmacy, so like a good consumer I head up to find a pediatrician who can write one out for me, since Alex’s main doctor isn’t around. I find no one I know, but do find a surly doctor who looks down her nose and tells me to have a seat in the waiting room till she can get around to me. I’ve got little patience for beaurocracy, so within minutes I’m out of there.
I tried the first main pharmacy, and they’re willing to help me (after all, the universal language in Ghana is cash!) but they’ve not got Humalog; they’ve got Regular and Lantus (good to know for later, but right now I don’t really care) but no Humalog… maybe one of the other pharmacies on the hospital grounds. Off I go in search… after the third pharmacy, I’m starting to get frantic that I’ll not find this stuff and have to rely on Regular insulin. I spot one of Alex’s doctors walking around and she directs me to the Diabetes Clinic. Saddest place (well, next to the children’s wing) that you ever want to see. They’ve got Humalog, but with the same expiration as the one from the wholesale distributor. I am sincerely frustrated at this point. I head back to pharmacy #1 and buy the Regular, just in case.
I go online looking for commiseration from my CWD friends, and learn that it’s alright to use the expired insulin, because the pharmaceutical companies are usually very liberal in their dating, so that they don’t run into lawsuits and such. It’s not like on October 31st that the insulin will instantly self-destruct, it may just degrade over time. That news comes as a major relief to me.
So I tell my husband to pick it up from the pharmacy, after I confirm again that they’ve got it in store. This time, without my even asking, they advise me that it will expire at the end of the month. I tell them it’s alright, I want it anyway and that my husband will be there to pick it up later in the day.
You can imagine my relief when Sly came home that night and handed me a box of Humalog 75/25 Mix!!!! What! They screwed up the package in the pharmacy, and Sly didn’t think to check the box (and to be honest, I’m not convinced he’d have known that it wasn’t what I really needed, anyway).
Here we go again.
Monday, August 31, 2009
"I’m low, I’m low, I’m low."
She was definitely low. The D-demon had reared its ugly face that day; fighting with her brothers, slamming doors, answering back – screaming back, actually – just generally behaving very very badly. The D-demon couldn’t be restrained. Oh, we tried. God knows, we tried. It all started like this…
Sunday, August 9th began like every normal day. I awoke and made a cup of coffee, surfed the net a bit and then at about 8:30 went back into the bedroom to check on Alex. She had been running slightly low overnight, which I attributed to a long day of swimming on Saturday. Not a big problem, just a matter of being sure some fast-acting glucose is on hand to prop her up a bit. Alex can gobble glucose tabs in her sleep.
The morning was uneventful, but maybe the D-demon was just still sleeping. I don’t know. By lunch time, though, it was obvious the D-demon was surfacing. Out of nowhere and for no good reason, there was screaming. Then fighting. And throwing things. I grabbed the D-demon by the arm and banished her to the bedroom. I tried begging and reasoning and holy water, but nothing worked. The D-demon was as evil as ever…
Me: “You could have hurt your brother by throwing that at him.”
D-Demon: “That’s sweet for him.” (Translation: Tough shit.)
Me: “Get in your room and stay there! Don’t come out till you’re normal!”
Then I slammed the bedroom door, wedged a crucifix through the door handle and sat down and prayed. Okay, I didn’t pray, but I was mumbling under my breath. Then I went back to my laptop and got back to the editing work I had been doing before I was so rudely interrupted.
I kept meaning to get up and check on the D-demon. But 5 minutes stretched to 10 and 10 minutes stretched to 20. And before you knew it an hour had passed. And it was quiet in there. Too quiet.
I opened the bedroom door, and immediately heard a low monotone voice repeating… I’m low, I’m low, I’m low. It was my Alex, not the D-demon, lying face down on the bed in only her underpants. My daughter was low and she knew it and she was scared. I grabbed the meter and squeezed out a drop of blood. I saw a number that I never hope to see ever again in her life – 1.0. That’s a frightening – terrifying – heart-stopping number.
I rushed into Mike’s room to grab his stash of Lucozade (I’d address this food hoarding issue with him later, but now, I’ve got another emergency to deal with) and raced back forcing her to drink. Fourteen minutes later, she’d only gotten up to 3.5. I tried more Lucozade and waited another few minutes. Whew. Finally, she’s at 9.2. High. Now we’re in the comfort zone. I made her some bread with butter and she ate it nicely.
Once my blood pressure was back to normal, I apologized to her. I told her that I never should have allowed her to go to bed without checking her first. The D-demon cannot have that kind of control over either of us. Even if I would have had to hold her down for a blood drop, I should have done it. You see, the D-demon is a tricky devil – used to only come when her blood sugar was high. No more. Now, the D-demon surfaces whenever it wants.
With perfect 20-20 hindsight, I realize that I did a couple of things wrong. I gave Alex her insulin for lunch and cookies, except that she didn’t eat the cookies ‘cause she didn’t like the cookies. Then I forgot to give her a replacement food for the cookies. Combined with the lows from yesterday’s exercise and my anger/frustration with the D-demon – well, it was a disaster of Hindenberg proportions.
As I said, I apologized to her. And you know what, Alex wouldn’t accept it! Nope, I tried and tried to take the blame for her low and she would have none of it. She told me that it was all her fault. Those are some very mature words coming from an 8-year old who has to accept much more responsibility than she should have to.
Now, I feel really guilty. And really proud.
Sunday, August 9th began like every normal day. I awoke and made a cup of coffee, surfed the net a bit and then at about 8:30 went back into the bedroom to check on Alex. She had been running slightly low overnight, which I attributed to a long day of swimming on Saturday. Not a big problem, just a matter of being sure some fast-acting glucose is on hand to prop her up a bit. Alex can gobble glucose tabs in her sleep.
The morning was uneventful, but maybe the D-demon was just still sleeping. I don’t know. By lunch time, though, it was obvious the D-demon was surfacing. Out of nowhere and for no good reason, there was screaming. Then fighting. And throwing things. I grabbed the D-demon by the arm and banished her to the bedroom. I tried begging and reasoning and holy water, but nothing worked. The D-demon was as evil as ever…
Me: “You could have hurt your brother by throwing that at him.”
D-Demon: “That’s sweet for him.” (Translation: Tough shit.)
Me: “Get in your room and stay there! Don’t come out till you’re normal!”
Then I slammed the bedroom door, wedged a crucifix through the door handle and sat down and prayed. Okay, I didn’t pray, but I was mumbling under my breath. Then I went back to my laptop and got back to the editing work I had been doing before I was so rudely interrupted.
I kept meaning to get up and check on the D-demon. But 5 minutes stretched to 10 and 10 minutes stretched to 20. And before you knew it an hour had passed. And it was quiet in there. Too quiet.
I opened the bedroom door, and immediately heard a low monotone voice repeating… I’m low, I’m low, I’m low. It was my Alex, not the D-demon, lying face down on the bed in only her underpants. My daughter was low and she knew it and she was scared. I grabbed the meter and squeezed out a drop of blood. I saw a number that I never hope to see ever again in her life – 1.0. That’s a frightening – terrifying – heart-stopping number.
I rushed into Mike’s room to grab his stash of Lucozade (I’d address this food hoarding issue with him later, but now, I’ve got another emergency to deal with) and raced back forcing her to drink. Fourteen minutes later, she’d only gotten up to 3.5. I tried more Lucozade and waited another few minutes. Whew. Finally, she’s at 9.2. High. Now we’re in the comfort zone. I made her some bread with butter and she ate it nicely.
Once my blood pressure was back to normal, I apologized to her. I told her that I never should have allowed her to go to bed without checking her first. The D-demon cannot have that kind of control over either of us. Even if I would have had to hold her down for a blood drop, I should have done it. You see, the D-demon is a tricky devil – used to only come when her blood sugar was high. No more. Now, the D-demon surfaces whenever it wants.
With perfect 20-20 hindsight, I realize that I did a couple of things wrong. I gave Alex her insulin for lunch and cookies, except that she didn’t eat the cookies ‘cause she didn’t like the cookies. Then I forgot to give her a replacement food for the cookies. Combined with the lows from yesterday’s exercise and my anger/frustration with the D-demon – well, it was a disaster of Hindenberg proportions.
As I said, I apologized to her. And you know what, Alex wouldn’t accept it! Nope, I tried and tried to take the blame for her low and she would have none of it. She told me that it was all her fault. Those are some very mature words coming from an 8-year old who has to accept much more responsibility than she should have to.
Now, I feel really guilty. And really proud.
Friday, June 26, 2009
4238
One year on…
Alexandra has now had type 1 diabetes for a single year. In that one year, she has gone from blood sugars that averaged in the mid-20s /mmol (that’s 400 to 600 /mg) to blood sugars that average less than 7.0 /mmol (125 /mg). For reference, a non-diabetic has blood sugars of less than 100 normally.
At diagnosis, her A1C, which measures the sugar in her blood over a 3 month period, was 14.7%. That equates to 22.4 /mmol (or 404 in the
That A1C does not come easy. It calls for lots of sacrifices, from all of us, Alexandra most of all, naturally. That 4,238 represents 2,718 finger pricks to check her blood sugar plus 1,520 injections. Give or take a handful, when maybe I forgot to log it. On average, though, nearly 12 times a day, my child has to have herself poked with a needle or a syringe.
In a single year: 4,238.
It’s been a long year. One in which I’ve aged probably ten-fold. I haven’t yet slept a full night through. I miss that. I also miss the spontaneity of our lives; everything has to be planned and thought through. I miss the sweet girl who used to live with us, who is occasionally replaced with her demon double. I really miss the “before” diabetes days.
But the after is what we’ve got to live with. And live with it we shall.
And one year on, I’d be remiss if I didn’t thank the people who helped Alex achieve a very successful first year… people like Michelle, Jane, Adjoa, Carla, Beth, Paula, Tim, Melissa, Scott and probably another dozen wonderful people who I hope will forgive me for not specifically mentioning them here. They’ve helped us by providing meters, strips, insulin pens, i-ports and all of the things that Alex needs to live her life to the fullest. And I can’t put a price on the emotional and psychological support I get from friends all over the world, friends who share with me one single all-encompassing value: We each love a child who has diabetes.
Most of all, I want to thank my mom, because we couldn’t have done it without her. She's sent umpteen care packages, all packed with necessities and goodies. And she'd be here in a minute if I asked her to be. Don't worry, mom, I won't ask. ;-)
Last, but not least, I want to thank Alexandra. She didn't ask for this stupid disease, and no, she didn't do anything to get it. But, she does what she has to do, usually without a grumble and sometimes even with a smile.
She's still my hero.
Please, pray for a cure.
Monday, June 22, 2009
All pizza is not created equal
Pizza is almost always the first choice in my household when the question, “what do you guys want for dinner?” is posed. I really don’t ask that question too often, as there are very few places that make pizza that’s anything close to what we know and love in the U.S. Of course, I’ve taught myself to make pizza, and I’ve gotten pretty good at the dough thing. In truth, I like to make pizza when I’m in one of my “moods” so that I can pound the hell – I mean gently knead – the dough to the proper consistency.
When I make pizza at home, I know pretty well how it will “respond” to Alex’s blood sugar and I can give her the right amount of insulin at the right time so that there’s very little change in her sugar level from fat spikes. See the tricky thing about pizza is the very thing that makes it perfect -- the combination of cheese, pizza sauce and dough. I've got it figured out that each slice of my homemade pizza has 30 carbohydrates in it. Homemade pizza is not a problem.
But, once in a great while, we’ll give in and buy a pizza, which we did last night. Southern Fried Chicken has really great red red, pretty good chicken and not too great pizza, but they do know how to do mozzarella cheese. And that, unfortunately, is Alex’s Achilles heel. She loves cheese – the gooier, the better. And this pizza was pretty darn gooey.
So before she even chewed her first slice, she got a single unit of Humalog; four slices later she got another 1½ units of Humalog. These weren’t really big pieces, and usually one unit per slice of my bigger homemade pizza pie is enough, so I assumed 2½ total units would be okay. After dinner and just before she went to bed we checked her number and she was actually 4.9 (88 to you /mg people); that would be lovely during the day, but I worried that she might still have insulin on board (or IOB, as we say in the trade – and you’ll need to know this later for the test) so I had her chew a couple of Lucozade tabs and say nighty night.
Sometime after midnight I heard her smacking her lips, a lot, as though her mouth were dry, so I figured I’d check her already. I mean, I was already awake having to listen to that lip smacking noise which is second only to listening to my husband snoring on my sleep deprivation scale. Sugar: 19.4; that’s a decimal point short of 350 in America. No wonder she’s smacking her lips like that. Not good. Thinking her fingers might still have glucose tab residue, I wipe her finger down and prick her again. The numbers are not improving at all. 24.1 (433) this time. Okay, so which crappy number do I believe and correct for? I open up the vial to draw out another strip to check her again and the strip flips out of my hand into the basket next to my bed – mind you, each strip is approximately $1 – but I’m not about to go looking for it. I check a third time – 25.1 (451) – this is getting worse and worse.
Here it is; the diabetes guy I hate most of all: Fat Spike. Fat Spike is going to do everything within his power to keep me from getting any decent sleep. I will have to figure out how much insulin to give Alex. But first, I’ve got to decide which number to believe. So I do the only logical thing; I figure the average and proceed from there.
Now, remember, it’s about 1:15 a.m. Normal people don’t even drink water well at 1:15 a.m. much less do math in their head. By my estimation, I figure she needs 2½ units of Humalog to get her into the high end of her range.
Here’s my math:
19.4 + 24.9 + 25.9 = 68.6 / 3 = 22.8
Ideal daytime range = 4.0 to 8.0
22.8 – 8.0 = 14.8 point reduction
Each unit of Humalog reduces her by 5.1
14.8 / 5.1 = 2.84 units
I’m rounding down to 2.5 units since its night time and who knows what’s going to happen. At night, you can’t just trust that you’ve corrected well. Nights are different. You have to check, check and check again. She could come down way too fast and crash while I’m sound asleep. The problem is consistency. At night, there is none. There’s no regular pattern for how well or poorly a correction will work. As it turns out, this one works a little too well.
At 1:20 a.m. I give her 2½ units of Humalog and set my clock.
At 2:24 a.m. she’s at 11.9 (214) and I think “good.” I set my clock again and go back to sleep. Only I don’t sleep, I think to myself that that’s a pretty steep decline for less than an hour’s worth of insulin. Maybe the meter was wrong. Let me recheck.
At 2:32 a.m. she’s 13.4 (241) – that’s better, but still worrying; I set my clock again. Instead of going to sleep I check my email on my phone browser and worry that the constant beep beeping is too loud.
At 2:55 a.m. she’s 13.8 (248) – what the hell is going on with her blood? I set my clock again and play with my phone again.
At 3:34 a.m. she’s 6.0 (108). Shit. She’s still got IOB of at least 1/3 of her dose. I can’t let her sleep on this, so I wake her up to eat some Lucozade tabs again, and drink some of this nasty glucose drink that my mom sent. This time I don’t set my clock. I’m sure she’ll be okay. Maybe she would have gone lower with the IOB and these extra carbohydrates will counteract and she'll be in normal range when she wakes up. Maybe.
Or maybe not.
At 5:52 a.m. she’s 10.8 (194). Mea culpa.
Pizza wins. Mom loses. Till next time.
Friday, June 5, 2009
Who the hell are you? And what have you done with our daughter?!
Ask the parent of any child with type 1 diabetes and they’ll tell you that it’s like living with a miniature version of Dr. Jekyll and Mr. Hyde. Blood sugars absolutely rule our kids and we work feverishly to ensure that they’re always in range. To say “that is easier said than done” is an understatement, to put it mildly.
Alex is no exception. Early in the diagnosis, we could always tell whether or not she was low or high. When she was low, she would get all teary-eyed and upset. When she was high, she was angry and combative. Now, it seems that we’re having trouble differentiating between lows and highs, because she gets crazy for both. And when I saw crazy, I don’t mean like nutty and silly. I mean crazed, as in stark raving mad lunacy. If she were a cartoon character, her face would turn crimson and she’d have steam blowing out of her ears.
I’ve got to say, I am glad she’s only 8 years old, because if she were stronger, we’d all be in big trouble. She will physically attack Sean for even the slightest insult or transgression (he’s a notorious teaser). I have to get physical just to get her to calm down. And I don’t mean I physically beat her (though, God knows, I’m tempted), but I have to restrain her (I know she is going to hurt Sean one of these days; fortunately, he doesn’t retaliate, but I know its coming) or push or drag her into the bedroom and force her to calm down, all the while I’m giving her an injection of her potion, er, I mean her insulin. She will throw a tantrum the likes of which you never want to see.
The worst part of it all is that when Alex acts like that, it’s all my fault because I could have prevented it from happening in the first place. It’s my job to keep her numbers under control, and if Miss Hyde is unleashed, it’s because I neglected to give her insulin in the right dose or at the right time, or I didn't calculate her carb factor correctly or she ate more or less than I expected her to eat. I’m only human.
But so is Alexandra. And I have to remember that, and sometimes remind her brothers and her dad, that she can’t control herself. It takes a lot of will power and effort to calm yourself down when too much sugar is racing through your veins – you can’t think straight, you can’t even see straight. It takes insulin and time, in that order. And a lot of love. Oh yeah, a lot of that. But I’ve got to be honest; it isn’t easy loving her when she’s Miss Hyde, but I do it because I know that her alter-ego – Alexandra – is in there somewhere, ready to emerge from the darkness to be our normal little girl again.
Alex is no exception. Early in the diagnosis, we could always tell whether or not she was low or high. When she was low, she would get all teary-eyed and upset. When she was high, she was angry and combative. Now, it seems that we’re having trouble differentiating between lows and highs, because she gets crazy for both. And when I saw crazy, I don’t mean like nutty and silly. I mean crazed, as in stark raving mad lunacy. If she were a cartoon character, her face would turn crimson and she’d have steam blowing out of her ears.
I’ve got to say, I am glad she’s only 8 years old, because if she were stronger, we’d all be in big trouble. She will physically attack Sean for even the slightest insult or transgression (he’s a notorious teaser). I have to get physical just to get her to calm down. And I don’t mean I physically beat her (though, God knows, I’m tempted), but I have to restrain her (I know she is going to hurt Sean one of these days; fortunately, he doesn’t retaliate, but I know its coming) or push or drag her into the bedroom and force her to calm down, all the while I’m giving her an injection of her potion, er, I mean her insulin. She will throw a tantrum the likes of which you never want to see.
The worst part of it all is that when Alex acts like that, it’s all my fault because I could have prevented it from happening in the first place. It’s my job to keep her numbers under control, and if Miss Hyde is unleashed, it’s because I neglected to give her insulin in the right dose or at the right time, or I didn't calculate her carb factor correctly or she ate more or less than I expected her to eat. I’m only human.
But so is Alexandra. And I have to remember that, and sometimes remind her brothers and her dad, that she can’t control herself. It takes a lot of will power and effort to calm yourself down when too much sugar is racing through your veins – you can’t think straight, you can’t even see straight. It takes insulin and time, in that order. And a lot of love. Oh yeah, a lot of that. But I’ve got to be honest; it isn’t easy loving her when she’s Miss Hyde, but I do it because I know that her alter-ego – Alexandra – is in there somewhere, ready to emerge from the darkness to be our normal little girl again.
Thursday, May 14, 2009
Healthilife? I don’t think so.
Okay, good thing I was sitting down, because news like this is not something you want to learn standing up. Apparently, a guy at the school came in to push his company’s new product, Healthlife. Now, we’ve seen the commercials on television – a bunch of happy laughing kids who rush to get their Healthilife juice box. No marketing novices, these guys, the commercials run during all of the cartoons.
So Alex shows me this purple box of Tropical flavored Healthilife juice. And she starts…
Alex: Mom, I bought this at school. The guy says it's good for all diseases.
Me: Alex, he’s a salesman. He wants you to buy his juice. That’s all. It’s simply juice.
Alex: No, mom. It’s going to cure me. The guy said if has no sugar in it, and if you’re sick with malaria or any disease you are going to be cured! So, can I drink it? Can I drink it, please, huh? Please?!!!
Me: Let me see the box.
Hmmm. My opinion: It’s a stupid juice box. Ingredients: Water, Fruit Juices… oh and here’s the magic ingredient – GLUCOSE!!
But Alex is an 8 year old girl. And the premise (promise?) is just what an 8 year old girl with Type 1 diabetes wants to hear: That she will be cured if she drinks this.
Mom has to play the bad guy, once again. Alex learns she’s been duped out of 65 pesawas for a juice box that’s no different than any other – except for the price, that is. Similar juice boxes sell for 30 or 40 pesawas.
When the boys come home, I ask them about the salesman. They confirm that this guy had a whole crowd of kids around him and he was pitching the benefits of this drink over any other. According to Mike (who did this amazingly funny impersonation), “If ‘dis guy over here drinks Healthilife and ‘dat guy over ‘dere drinks “someting” (sic) else, and ‘dey have a race, ‘den ‘dis Healthilife boy, he’s gonna win dat race every single time. He gonna go very fast because of ‘da glucose.”
Funny or not, if I had been at that school listening to that crap, I’d have chewed this guy a new one. Telling our kids that this drink is good for malaria and all other diseases is simply outrageous. How many kids bought that “no added sugar” diatribe as gospel, not understanding that it wasn’t the same as “sugar-free.” Too many kids, I’ll wager. According to Mike, pretty much everyone bought a juice box, and they’re now being sold at the canteen. That's great. Just wait till next year when the Ministry of Health reports that incidents of Type 2 diabetes in children has increased in Ghana, now that all of our kids are being tricked into drinking this "no sugar added" drink under the delusion that it's healthy.
Sean told me that some of his classmates will chastise him for buying a 7-Up (saying, of course, you're going to get diabetes like your sister -- and yes, Sean does try to explain the difference between Type 1 and Type 2) – meanwhile they’re drinking a Healthilife juice box with the same amount of sugar in it. I asked Sean why they’d even allow this guy to come to the school to sell this product. He said, “Mom, this is
And how devastating and evil is it to dash the hopes of an 8 year old girl who only wants a cure and is tricked into believing that she’ll find it in a juice box?
Friday, May 8, 2009
We are truly blessed
There are many ways for a type 1 diabetic to get the insulin they need to live into their body. Alex uses multiple daily injections to get her insulin. An insulin pump is another way (very common in developed countries), but it will probably never be doable here in Ghana. The technology isn’t here, and for the most part, I think the pump companies wouldn’t come because there’s no money to be made on it. Each pump costs in the thousands of dollars and that's just for the equipment. Factor in the infusion sets, and all of the other stuff needed, and it's an expensive never-ending treatment. No, insulin pump companies will not bring this marvel of medicine to Ghana any time soon because it is all about the money (and profits), despite what anyone says. But we recently received two donations, which are probably as close to (insulin) “pumping” as Alex is going to get, at least for the next few years. Two very nice ladies sent us two very interesting things: The Luxura Insulin Pen and the I-Port.
Now, Alex already has an insulin pen, and it’s really nice ‘cause it keeps track of the last 16 doses and all, but it only doses in full units. And Alex is still small enough that she occasionally needs a half unit or a unit and a half. If I give her a full unit and it’s too much insulin, her blood sugar gets too low, and if I give her less than she really needs, then her sugar gets too high. We could get around that with a syringe, but that’s neither here nor there. But the Luxura insulin pen doses in half units, and it has been wonderful at keeping Alex’s numbers in better range. Her 7 day and 30 day averages have both gone down. Of course the proof is in the A1C, but that’s next month.
The other interesting donation is the I-Port, which is what is known as a delivery device. It allows insulin to be injected through a port. You know how if a person needs an IV in the hospital they stick that little thingy in the back of their hand, and then they inject into that? This is the same concept. The I-Port goes into Alex, a little tiny (really really tiny) cannula stays embedded in her skin (until it removes, that is) and all of her insulin is injected through it. No more individual injections!
I was a little intimidated by it when I first saw it, because the needle that the cannula is in is a lot bigger than her pen needles or her syringe, but I was brave and followed the instructions and 1-2-3 in it went! Alex didn’t flinch or wince or anything. For the next 24 hours all of her insulin went into the port. Then, the I-Port came off after swimming, so we had to do another. And another, and another.
That's the I-Port in the picture, a few hours before it came off. So far, we’ve been through five of them; each lasting only a day or so. They’re supposed to last between 3 and 4 days, so that has been disappointing. But Alex loves it, because I can give her a shot before food and after food, if she wants more than she originally thought. (Oh, and that Fanta cocktail requires a full unit of insulin all by itself.) That’s the good news. The bad news is that I’ve only got another dozen left, so we’re using it a little more judiciously, and I’m telling Alex to be careful, because she’s accidentally torn out the last two by banging into things.
On a sad note, I read a press release the other day that started off with these disturbing words, “The life expectancy for a child with type 1 diabetes in much of sub-Saharan Africa is typically less than one year.” I emailed the contact person who put out this press release and asked when we can expect to see this program come to Ghana. I haven't had a response, yet, but I'm hopeful.
As we approach Alexandra’s one year anniversary of her dealing with this horrible disease, I can’t tell you how amazingly lucky and blessed we are. I am sickened at the thought that there may be so many “unlucky” children with type 1 diabetes here. All of our children are blessings from God. They don’t deserve this.
Now, Alex already has an insulin pen, and it’s really nice ‘cause it keeps track of the last 16 doses and all, but it only doses in full units. And Alex is still small enough that she occasionally needs a half unit or a unit and a half. If I give her a full unit and it’s too much insulin, her blood sugar gets too low, and if I give her less than she really needs, then her sugar gets too high. We could get around that with a syringe, but that’s neither here nor there. But the Luxura insulin pen doses in half units, and it has been wonderful at keeping Alex’s numbers in better range. Her 7 day and 30 day averages have both gone down. Of course the proof is in the A1C, but that’s next month.
The other interesting donation is the I-Port, which is what is known as a delivery device. It allows insulin to be injected through a port. You know how if a person needs an IV in the hospital they stick that little thingy in the back of their hand, and then they inject into that? This is the same concept. The I-Port goes into Alex, a little tiny (really really tiny) cannula stays embedded in her skin (until it removes, that is) and all of her insulin is injected through it. No more individual injections!
I was a little intimidated by it when I first saw it, because the needle that the cannula is in is a lot bigger than her pen needles or her syringe, but I was brave and followed the instructions and 1-2-3 in it went! Alex didn’t flinch or wince or anything. For the next 24 hours all of her insulin went into the port. Then, the I-Port came off after swimming, so we had to do another. And another, and another.
That's the I-Port in the picture, a few hours before it came off. So far, we’ve been through five of them; each lasting only a day or so. They’re supposed to last between 3 and 4 days, so that has been disappointing. But Alex loves it, because I can give her a shot before food and after food, if she wants more than she originally thought. (Oh, and that Fanta cocktail requires a full unit of insulin all by itself.) That’s the good news. The bad news is that I’ve only got another dozen left, so we’re using it a little more judiciously, and I’m telling Alex to be careful, because she’s accidentally torn out the last two by banging into things.
On a sad note, I read a press release the other day that started off with these disturbing words, “The life expectancy for a child with type 1 diabetes in much of sub-Saharan Africa is typically less than one year.” I emailed the contact person who put out this press release and asked when we can expect to see this program come to Ghana. I haven't had a response, yet, but I'm hopeful.
As we approach Alexandra’s one year anniversary of her dealing with this horrible disease, I can’t tell you how amazingly lucky and blessed we are. I am sickened at the thought that there may be so many “unlucky” children with type 1 diabetes here. All of our children are blessings from God. They don’t deserve this.
Tuesday, April 7, 2009
Parents Day at SOS School
Yesterday was “Open Day” at the kids’ school. This is the day parents are supposed to come in and review the children’s work. Sly and I really didn’t have any intention of going, because while reviewing the work is all well and good, it’s also supposed to be the day you offer gratuities to the teachers for a job “well done” and that’s not something we condone. We’ve actually had teachers (not at this school, though) who told our kids to be sure that they brought their “parcel” to school the next day. “Or else, what?” I always wondered.
But at about 8:15 or so, my phone rings and it’s the school librarian. Thinking it’s a diabetes-related emergency I answer. It’s Alex. She is begging me to come to school and review her work. I’ve got to give it to her for her persistence, so we agree, we’ll be there later.
When I arrive, Alex drags me to her seat and shows me her exam papers. Nothing great about them, let me admit that up front. Alex was always a very good student, with terrific marks. At Soul Clinic she was always within the top 10 in her class. But since the diagnosis last year, her grades have suffered. On the board is a ranking sheet; Alex is 26 out of 27. Awful, and truly truly sad.
Auntie Cornelia comes over once she’s rid of the other parents and the first words out of her mouth are that she gets very angry at Alexandra, because she just knows that she can do better. Bingo! Time for the D discussion!
I explain to Auntie that I agree, Alex can do better, and she has done better in the past. I tell her about Alex being a wonderful student in her old school, always among the top 10. Loves to read, loves math, loves spelling, etc.
Then I tell her about diabetes (again) and how low or high blood sugars can affect Alex’s work and her concentration. I tell her that how in the U.S., children with diabetes are protected at school under a federal (504) law, because they are at a disadvantage due to their medical condition and that, by law, those children are given the opportunity to check their blood glucose before taking a test, and are allowed to adjust their sugar level if its not in range, either with glucose tabs for a low or an insulin injection for a high. I tell her that when Alex's blood glucose is low, she’ll be sleepy, and she might have a headache or a stomach ache, and may not be able to concentrate on the paper in front of her. I tell her that when Alex's sugar is high, she’ll be fidgety, perhaps thirsty or need to pee a lot, that she may have blurry eyesight and not even see the exam paper clearly.
I think a light bulb clicked on. Auntie Cornelia didn’t remember that we had discussed this all already; she also didn’t realize that Alex was only diagnosed last June. But now she sees and I hope she understands. She and I agree that we will work as a team. On the first day of the next term, Auntie will give me a copy of her syllabus, so I know what Alex is working on. When Alexandra is out of school with sickness – and I reinforced to her that Alex can’t be in school when she’s sick because her sugar levels can quickly turn bad – her homework will be made available so that she can see what she is missing. We also agreed that when Alexandra is going to take an exam, she will be permitted to check her sugar level prior to the test. I don’t think Alex will go high at school, given her fixed meals, but a low is a distinct possibility. I also told the teacher to feel free to ask Alex to check her sugar if she feels that Alex just isn’t "right."
Now, I’m not sure all of this is going to help, but I pray it will. Auntie Cornelia told me that she prays for Alex to “get better.” I again had to explain that this disease isn’t going to get better until a cure is found; that Alex will always have diabetes. All she can pray for is that we can manage it in a way that Alex will live a long “healthy” life. That’s my job and it’s more important to me than ensuring that Alex will be in the top 10 in her class. But if that happens as a side effect of better management, I’ll take it.
Oh, and I did manage to find an error in the grading of one of Alex’s test papers, so her score on that test has been revised upwards from a 48 to a 69. Not a vast improvement, but enough to move her up two notches to 24 on the ranking board. By the end of next term, diabetes willing, we’ll have her up in the top half of her class, at least. Wish us luck.
But at about 8:15 or so, my phone rings and it’s the school librarian. Thinking it’s a diabetes-related emergency I answer. It’s Alex. She is begging me to come to school and review her work. I’ve got to give it to her for her persistence, so we agree, we’ll be there later.
When I arrive, Alex drags me to her seat and shows me her exam papers. Nothing great about them, let me admit that up front. Alex was always a very good student, with terrific marks. At Soul Clinic she was always within the top 10 in her class. But since the diagnosis last year, her grades have suffered. On the board is a ranking sheet; Alex is 26 out of 27. Awful, and truly truly sad.
Auntie Cornelia comes over once she’s rid of the other parents and the first words out of her mouth are that she gets very angry at Alexandra, because she just knows that she can do better. Bingo! Time for the D discussion!
I explain to Auntie that I agree, Alex can do better, and she has done better in the past. I tell her about Alex being a wonderful student in her old school, always among the top 10. Loves to read, loves math, loves spelling, etc.
Then I tell her about diabetes (again) and how low or high blood sugars can affect Alex’s work and her concentration. I tell her that how in the U.S., children with diabetes are protected at school under a federal (504) law, because they are at a disadvantage due to their medical condition and that, by law, those children are given the opportunity to check their blood glucose before taking a test, and are allowed to adjust their sugar level if its not in range, either with glucose tabs for a low or an insulin injection for a high. I tell her that when Alex's blood glucose is low, she’ll be sleepy, and she might have a headache or a stomach ache, and may not be able to concentrate on the paper in front of her. I tell her that when Alex's sugar is high, she’ll be fidgety, perhaps thirsty or need to pee a lot, that she may have blurry eyesight and not even see the exam paper clearly.
I think a light bulb clicked on. Auntie Cornelia didn’t remember that we had discussed this all already; she also didn’t realize that Alex was only diagnosed last June. But now she sees and I hope she understands. She and I agree that we will work as a team. On the first day of the next term, Auntie will give me a copy of her syllabus, so I know what Alex is working on. When Alexandra is out of school with sickness – and I reinforced to her that Alex can’t be in school when she’s sick because her sugar levels can quickly turn bad – her homework will be made available so that she can see what she is missing. We also agreed that when Alexandra is going to take an exam, she will be permitted to check her sugar level prior to the test. I don’t think Alex will go high at school, given her fixed meals, but a low is a distinct possibility. I also told the teacher to feel free to ask Alex to check her sugar if she feels that Alex just isn’t "right."
Now, I’m not sure all of this is going to help, but I pray it will. Auntie Cornelia told me that she prays for Alex to “get better.” I again had to explain that this disease isn’t going to get better until a cure is found; that Alex will always have diabetes. All she can pray for is that we can manage it in a way that Alex will live a long “healthy” life. That’s my job and it’s more important to me than ensuring that Alex will be in the top 10 in her class. But if that happens as a side effect of better management, I’ll take it.
Oh, and I did manage to find an error in the grading of one of Alex’s test papers, so her score on that test has been revised upwards from a 48 to a 69. Not a vast improvement, but enough to move her up two notches to 24 on the ranking board. By the end of next term, diabetes willing, we’ll have her up in the top half of her class, at least. Wish us luck.
Friday, April 3, 2009
FYI: Saliva has nothing to do with Type 1 Diabetes
It’s been a relatively uneventful couple of weeks. Alex has had fairly stable numbers with her blood sugar readings, we got her A1C report which went up .1 this quarter to 7.4 (not too terrible, but we’re still tweaking with split Lantus and stuff), and we went for her quarterly appointment with the doctor. Kind of boring stuff. Don’t get me wrong – I like boring, especially when it comes to diabetes! I’ll take boring any day of the week over any kind of blood sugar-induced excitement.
The other day, we had something non-boring occur. Sly, the kids and I met with a very nice young woman from
So, after a late start getting to the restaurant (you know “us” Ghanaians, late for everything!), we finally arrived at 11:15 at Chicken Lickin’ in Osu. Jillian arrived a few minutes later (her driver got lost) and after the formalities we sat down to order drinks and food.
First things first; Alex had to check her sugar. Alex displayed all of her diabetes prowess with flawless execution of a sugar check and an insulin injection. A single unit was enough to keep her in range since this restaurant serves Coca Cola Light. A few minutes after the drinks arrived and the food placed before us Jillian whipped out something that brought Alex to a halt: An insulin pen. Yup, Jillian also has Type 1 Diabetes, and has had it for about 5 years. And Alex very rarely gets to see someone with D up close and personal like that. Jillian gave herself her shot in the thigh, and that had Alex propelling herself to my side of the table. “Mom,” she whispered, “she didn’t do an air squirt!” “Why didn’t she?” I suggested Alex ask her, but Alex was still a little too shy into the meeting to do it. But that question niggled Alex for quite a while, apparently, because she eventually did get up the courage to ask. Jillian didn’t realize she was “supposed” to air squirt.
So we all chit-chatted for a little while, feeling each other out, so to speak, and that Jillian got down to the nitty gritty: the interview (which, of course, was the reason she was here after all). Sly signed her release form, Jillian clicked on her recorder and we started. Oh, we had a lot to say and I won’t go into it in detail here (I know, you’re thinking, “thank God!”). I’ve really said it all before.
But after a while it was time to interview Alex, who was very excited with the prospect of signing her (own) release form, and talking (directly) into the recorder. There were lots of standard questions, and some standard responses. Alex was right when she answered that Type 1 Diabetes is a disease that you get and you didn’t do anything to get it, and that it’s different from Type 2 diabetes where you get it because you eat too much or don’t exercise. I have to admit, I was really proud of all of her responses. Except for this response, which is pretty close to verbatim: “Some people might get Type 1 Diabetes because someone who already has Type 1 Diabetes spit in their mouth.” I have no idea where she got that from – maybe some misperceived HIV/AIDS information from school?!
Then Jillian allowed Alex to interview her and offered her the questionnaire that she worked from. Alex kept to the format, but informed Jillian she was going to mix the questions around. Then Alex added a few of her own questions, apparently. The one that pops out in my mind is “How many boyfriends did you have?” Alex, I imagine, will be working as a gossip columnist when she gets older.
The interview ended and Jillian went on her way, but not before a quick hug and a gift to Alex of a heart-shaped key chain from
Thursday, March 12, 2009
The Field Trip that Wasn’t
Yesterday, Alex had her school first field trip since her diagnosis. Only she didn’t get to go. We learned about the field trip just last week, Tuesday the 3rd I think, even though the notice was dated February 20-something. It said that Alex’s class would be going to the Akosombo Dam and Kpong Water Works on March 11th, leaving the school at 7:00 a.m. and returning at 5:00 p.m. Experience has shown the return bus from the field trips is always late; sometimes as much as 90 minutes. So we're talking a day of about 11 hours outside of my control.
And the fee for this trip was GHC 20 (about $18) payable by Thursday, March 4th. Mike also had an excursion scheduled for that day, different trip though, with a fee of GHC 15. Truth time: We didn’t have the money for the fees on the day it was due, so we didn’t send the money in until Monday.
On Monday morning, I sent a note to Alex’s teacher, enclosing the money and suggesting that I be allowed to accompany Alex on the field trip, given her “special situation” and the need for additional testing and insulin injections outside of the normal school hours. I specifically said that Alex would not attend if I couldn’t go too.
After the kids had been in school for about an hour, we get a phone call that we should come and pick them up again, because most of the students and many of the teachers hadn’t shown up for school on the assumption it was a holiday (most of the public schools were on holiday but not SOS). So I rush in to get her and find that her teacher isn’t in, only a substitute. He acknowledges that he got the money, but didn’t read the note, but he listened to my diatribe and agreed it would be best for me to go. But of course, he's just the sub.
I figured on my way out, I’d go talk to the headmaster and run it up the flagpole, so to speak. He wasn’t in either (maybe he also didn’t know it wasn’t a holiday!).
Tuesday comes and I go to pick up Alex and talk to her teacher about the trip. At least today, her teacher is in. But she knows nothing about a note that I left for her. (And what is with that! Wouldn’t you assume a substitute would pass along the day’s doings?!) So I go through it (again) with her. She also thinks it is not unreasonable for me to go along, but she can’t make that call. She says I should talk to the assistant headmaster.
The assistant headmaster is not in. The office secretary (not the friendliest of sorts, by the way – I don’t think I’ve ever seen her smile) suggests that we call the headmaster who also (still) isn't in. Okay.
I call hubby (headmaster’s old school mate, remember?) and tell him that I am something like 0 for 4 on this matter. He agrees that he’ll call Heady and let me talk to him. Now, truth is, Sly is not really sure about why I am insisting that I have to go along in the first place. He keeps thinking its all about glucose testing and insulin, and never the possibility – extreme as it may be – of an emergency situation where Alex goes so low that she seizes. I don’t think he believes that day will ever come. In a weird way, I hope it gets here soon, so it will be over and done with and he will see what I’m talking about. I’m not talking grand mal, just petit, one that I can handle with little difficulty. Sly has never seen Alex when she was low enough to be disoriented… at the point when she doesn’t know that she should suck liquid up out of the juice box straw that I inserted between her lips and has to be told to drink. No, he’s never seen that.
Well, a call is put into Heady and goes to voice mail. While waiting for his return call, we “discuss” other options. Like me riding behind the bus in Ekow’s taxi. Except that I won’t be allowed into the dam or the water works, since they are government installations and I wouldn’t be on the “guest list.”
Heady never called back. Yesterday, the school bus came and went without Alex. Alex and I went to the local pool and enjoyed the day.
So, was I being too overprotective? I know my husband thinks so. He’d have let her go on the field trip and hoped for the best. He believes that because her schools days are so “relatively” normal that this trip would be no different. Yes, her regular schools days are “relatively” normal. She tests her sugar before snack and lunch and she takes 2 units of a prefilled syringe for her lunch. But her lunch is always the same. Always. And still, her numbers are different every single day. And I’m also only 7 minutes away from the school just in case there’s an emergency.
So how can he expect that a field trip would be the same? Different eating times, different food, different snacks, different exercise schedule. All of those things combine to create a mathematical equation where you have to solve for X. Except that you don’t know all of the variables.
Sly asked me what I would do if there was an emergency. I’d administer glucagon, that’s what I’d do. I asked him what he’d do, and he didn’t have an answer.
So, am I being too overprotective? Did I blow this out of proportion? Well, we’ll never know. The bottom line is I was not willing to establish precedent by letting her go on the field trip alone. The outcome would be (in my mind) a lose-lose situation no matter what happened or didn’t happen. If she had had a problem, I wouldn’t be there. And if she didn’t have a problem, it would mean that I’d have to fight harder to go along on the next field trip. But some day, there may be a problem. And I want to prevent that some day from coming for as long as I can.
And the fee for this trip was GHC 20 (about $18) payable by Thursday, March 4th. Mike also had an excursion scheduled for that day, different trip though, with a fee of GHC 15. Truth time: We didn’t have the money for the fees on the day it was due, so we didn’t send the money in until Monday.
On Monday morning, I sent a note to Alex’s teacher, enclosing the money and suggesting that I be allowed to accompany Alex on the field trip, given her “special situation” and the need for additional testing and insulin injections outside of the normal school hours. I specifically said that Alex would not attend if I couldn’t go too.
After the kids had been in school for about an hour, we get a phone call that we should come and pick them up again, because most of the students and many of the teachers hadn’t shown up for school on the assumption it was a holiday (most of the public schools were on holiday but not SOS). So I rush in to get her and find that her teacher isn’t in, only a substitute. He acknowledges that he got the money, but didn’t read the note, but he listened to my diatribe and agreed it would be best for me to go. But of course, he's just the sub.
I figured on my way out, I’d go talk to the headmaster and run it up the flagpole, so to speak. He wasn’t in either (maybe he also didn’t know it wasn’t a holiday!).
Tuesday comes and I go to pick up Alex and talk to her teacher about the trip. At least today, her teacher is in. But she knows nothing about a note that I left for her. (And what is with that! Wouldn’t you assume a substitute would pass along the day’s doings?!) So I go through it (again) with her. She also thinks it is not unreasonable for me to go along, but she can’t make that call. She says I should talk to the assistant headmaster.
The assistant headmaster is not in. The office secretary (not the friendliest of sorts, by the way – I don’t think I’ve ever seen her smile) suggests that we call the headmaster who also (still) isn't in. Okay.
I call hubby (headmaster’s old school mate, remember?) and tell him that I am something like 0 for 4 on this matter. He agrees that he’ll call Heady and let me talk to him. Now, truth is, Sly is not really sure about why I am insisting that I have to go along in the first place. He keeps thinking its all about glucose testing and insulin, and never the possibility – extreme as it may be – of an emergency situation where Alex goes so low that she seizes. I don’t think he believes that day will ever come. In a weird way, I hope it gets here soon, so it will be over and done with and he will see what I’m talking about. I’m not talking grand mal, just petit, one that I can handle with little difficulty. Sly has never seen Alex when she was low enough to be disoriented… at the point when she doesn’t know that she should suck liquid up out of the juice box straw that I inserted between her lips and has to be told to drink. No, he’s never seen that.
Well, a call is put into Heady and goes to voice mail. While waiting for his return call, we “discuss” other options. Like me riding behind the bus in Ekow’s taxi. Except that I won’t be allowed into the dam or the water works, since they are government installations and I wouldn’t be on the “guest list.”
Heady never called back. Yesterday, the school bus came and went without Alex. Alex and I went to the local pool and enjoyed the day.
So, was I being too overprotective? I know my husband thinks so. He’d have let her go on the field trip and hoped for the best. He believes that because her schools days are so “relatively” normal that this trip would be no different. Yes, her regular schools days are “relatively” normal. She tests her sugar before snack and lunch and she takes 2 units of a prefilled syringe for her lunch. But her lunch is always the same. Always. And still, her numbers are different every single day. And I’m also only 7 minutes away from the school just in case there’s an emergency.
So how can he expect that a field trip would be the same? Different eating times, different food, different snacks, different exercise schedule. All of those things combine to create a mathematical equation where you have to solve for X. Except that you don’t know all of the variables.
Sly asked me what I would do if there was an emergency. I’d administer glucagon, that’s what I’d do. I asked him what he’d do, and he didn’t have an answer.
So, am I being too overprotective? Did I blow this out of proportion? Well, we’ll never know. The bottom line is I was not willing to establish precedent by letting her go on the field trip alone. The outcome would be (in my mind) a lose-lose situation no matter what happened or didn’t happen. If she had had a problem, I wouldn’t be there. And if she didn’t have a problem, it would mean that I’d have to fight harder to go along on the next field trip. But some day, there may be a problem. And I want to prevent that some day from coming for as long as I can.
Monday, February 23, 2009
When the planets align…
There’s no such thing as “controlling” Type 1 Diabetes. That’s like saying you can “control” a wild animal which you’ve been training and domesticating (sad case in point, Travis the chimp!). Despite all your good efforts, one day, it’s just gonna turn on ya. Diabetes is like that; the best you can do is manage it day to day, and try to keep it on a tight leash.
Well, we were able to keep diabetes on a very tight leash for a whole single day last week. It was February 18th 2009. I’ve got it imprinted in my memory, because it was so very very sweet. It was like the planets aligning. Everything fell into perfect balance.
Maybe that doesn’t sound like a big deal. But really, it is. Since Alex switched to MDI (multiple daily injections) in November, her numbers have been all over the place -- lows of 2.5 (45) and highs of 24.3 (437). Keep in mind, a person without diabetes is about 5.5 (100) maybe up to about 8.0 (140) after eating. But, that day, February 18th 2009… ahh. Alexandra was 100% in her range (4.0 to 8.0).
6.7 (120) at 1:04 a.m.
6.3 (113) at 6:00 a.m.
Injection of 2 units of Humalog at 6:40 a.m.
5.2 (97) at 9:30 a.m.
7.7 (139) at 11:30 a.m.
Injection of 2 units of Humalog at 11:34 a.m.
6.9 (124) at 3:00 p.m.
Injection of 2 units of Humalog at 3:05 p.m.
Injection of 8 units of Lantus at 3:06 p.m.
5.3 (95) at 5:30 p.m.
Injection of 2 units of Humalog at 5:38 p.m.
8.0 (144) at 7:34 p.m.
If only every day could be like that!
Well, we were able to keep diabetes on a very tight leash for a whole single day last week. It was February 18th 2009. I’ve got it imprinted in my memory, because it was so very very sweet. It was like the planets aligning. Everything fell into perfect balance.
Maybe that doesn’t sound like a big deal. But really, it is. Since Alex switched to MDI (multiple daily injections) in November, her numbers have been all over the place -- lows of 2.5 (45) and highs of 24.3 (437). Keep in mind, a person without diabetes is about 5.5 (100) maybe up to about 8.0 (140) after eating. But, that day, February 18th 2009… ahh. Alexandra was 100% in her range (4.0 to 8.0).
6.7 (120) at 1:04 a.m.
6.3 (113) at 6:00 a.m.
Injection of 2 units of Humalog at 6:40 a.m.
5.2 (97) at 9:30 a.m.
7.7 (139) at 11:30 a.m.
Injection of 2 units of Humalog at 11:34 a.m.
6.9 (124) at 3:00 p.m.
Injection of 2 units of Humalog at 3:05 p.m.
Injection of 8 units of Lantus at 3:06 p.m.
5.3 (95) at 5:30 p.m.
Injection of 2 units of Humalog at 5:38 p.m.
8.0 (144) at 7:34 p.m.
If only every day could be like that!
Saturday, February 7, 2009
“Looks like we’ve just had our first glitch for this mission.”
The start of Alex’s 8th year probably isn’t what she expected. On Monday, February 2nd, my little Ground Hog baby celebrated her 8th birthday. She has been anticipating and making plans for this day for weeks, if not months… every sentence starts out with, “When I am 8…”
Monday she goes off to school as usual. She has PE for first class, and is supposed to check her sugar before and after. No problem. She is also supposed to check her sugar at break time, which coincides with the after PE program, so again no problem. She is also supposed to check her sugar at lunch time. Problem. She ran out of strips. Evelyn, the librarian, calls and I come scampering to the school, in my cleaning-the-house skanky clothes, and pull her out of class to check her sugar. She’d already eaten lunch, but surprisingly her after lunch number is a 3.5 (63). Maybe an after-PE crash. Whatever. I crank her up with 2 glucose tabs, and promise to return later with her birthday goody bags.
Once I’m home and cleaned up, Sly and I start on the goody bags – juice, corn puffs, Milo cubes and erasers – and bring them to her class. Alex is happy, even though the bags are a bit on the lame-o side.
When she gets home from school, I have her help me make fairy cakes from a mix. Like any normal kid, she wants to lick the spoon and I figure, go for it. I’ll bolus her later. After dinner of soft tacos with rice and black beans, we all have cake and ice cream. Even with all this, Alex’s numbers stay pretty lovely and all is well with the world, or at least this small part of it.
Until 10:30 that is. Alex wakes up crying. Her teeth are hurting and she can’t sleep. She wants to go in the living room because it hurts to lie flat. So I hustle her in there before she wakes up Sly, and check her sugar. She’s running a bit high now – 13.5 (265) – probably from all that friggin’ sugar-escalating, tooth-achin’ ice cream that she consumed earlier. I give her Tylenol and a correction unit, and by 1:00 pm she’s just about in range and willing to go back to sleep.
Now, while I thoroughly enjoy (and desperately and definitely need) my beauty sleep, I have to admit it wasn’t all that terrible to sit up and watch TV at midnight, because I got to watch CSI Las Vegas, which I haven’t seen in years. Make the most of what you’re handed, that’s what I say.
When the morning comes, I tell Sly that Alex has to go to the dentist today. No ifs, ands or buts about it (‘cause we’ve been putting off a dental check-up for her for months). So we ride with the boys to school and then head into Accra to find a dentist. The good thing about living in Ghana is that you don’t have to worry about appointments for things like doctors or dentists or beauticians. They still work in the old-fashioned "Walk-ins Welcome" kid of way. So we walk in at 8:45 and we’re seen by the dentist at 9:15. Not too bad. In the states, even with an appointment, we’d probably be waiting longer.
The dentist looks at Alex’s mouth and spots a lot of trouble. Her baby teeth are wiggly, but they’re crumbling faster than they’re falling out. She’s lost a filling in one tooth, and she’s got a couple of cracks in two others. He fills what he needs to fill, and shows Sly a tooth that he’s just going to ignore because it’s too crumbled to fill and he figures it will fall out before it starts causing pain. (I certainly hope so.) Sly is a little bit green around the gills, because he’s never been to a dentist in his life and being this close to one is a little disconcerting. Sly has beautiful white perfect teeth. Oh, and his mother of 88 still has all of her beautiful white perfect teeth.
The dentist made us chuckle when he tells us that he’s glad that Alex’s teeth problems aren’t too bad and didn’t require any anesthesia, because he’d hate to have to give her a needle (Novacaine) as he doesn’t want children to have a fear of needles. We told him that needle-phobia was the least of our concerns; Alex deals with needles at least 10 times a day!
By the time we get back home it’s too late to send Alex to school, so she gets a freebie on this one. The rest of the day and that night is a non-event. That’s good. It’s lets us store energy for what’s to come.
About 4:30 am, I happen to brush against Alex and find that she’s burning up. What now?! Her sugar is in range, but her temperature is 99.7. An hour later, her sugar is still good, but she’s up to 100.2. There is no way she can go to school with a fever, so here goes another non-school day.
Another hour goes by and she’s at 101 and she’s awake enough now to tell me her “neck” is hurting – she means the inside of her neck, not the outside. Her sugar is still good, but I check her ketones and they’re at .5. Not terrible, but not giving me the warm and fuzzies, ya know? Fever is never a good thing for a child with diabetes, so today we’re off to the doctor.
Doc orders a blood count to check for malaria and a swab for strep throat, because her throat is red. The lab technician gives us another chuckle when he pulls a new lancet out of the box and tells Alex that this won’t hurt. Hah! Good luck finding an unpricked, uncalloused finger, I tell him.
The lab results come in and they’re positive for malaria parasites, and negative for strep. Oh well, can’t win ‘em all.
She’s on malaria medication, and antibiotics anyway, and Tylenol to keep the fever down which absolutely refuses to give up the ghost even as of today. The real problem is she’s got no appetite, and I hate that she’s not eating, so I give her lots of juice.
Now, when I mentioned to the local clinic doctor about giving her juice, he kind of fought me on that. He says I should give her only water, because the juice is high in sugar. To that I think, “d’oh!” “But,” I tell him, “if she’s not eating, and she’s on insulin and showing trace ketones then I’ve got to give her carbs and insulin to knock out the ketones and cover her basal.” He doesn’t really get this, but I know what I’m talking about. He suggests I call our regular doctor afterward. Good suggestion. Sly is leaning toward this doctor’s suggestion about the water drinking issue, and that’s kind of pissing me off. I keep repeating myself, “Yeah the water is fine if she’s eating, but she’s not eating and she’s got to have carbs!!”
Sly also wants me to call the doctor and see what she says. Dr. Renner agrees with me. Give her liquids with carbs if she’s not eating. I win. Good thing, because I’m a helluva sore loser.
Monday she goes off to school as usual. She has PE for first class, and is supposed to check her sugar before and after. No problem. She is also supposed to check her sugar at break time, which coincides with the after PE program, so again no problem. She is also supposed to check her sugar at lunch time. Problem. She ran out of strips. Evelyn, the librarian, calls and I come scampering to the school, in my cleaning-the-house skanky clothes, and pull her out of class to check her sugar. She’d already eaten lunch, but surprisingly her after lunch number is a 3.5 (63). Maybe an after-PE crash. Whatever. I crank her up with 2 glucose tabs, and promise to return later with her birthday goody bags.
Once I’m home and cleaned up, Sly and I start on the goody bags – juice, corn puffs, Milo cubes and erasers – and bring them to her class. Alex is happy, even though the bags are a bit on the lame-o side.
When she gets home from school, I have her help me make fairy cakes from a mix. Like any normal kid, she wants to lick the spoon and I figure, go for it. I’ll bolus her later. After dinner of soft tacos with rice and black beans, we all have cake and ice cream. Even with all this, Alex’s numbers stay pretty lovely and all is well with the world, or at least this small part of it.
Until 10:30 that is. Alex wakes up crying. Her teeth are hurting and she can’t sleep. She wants to go in the living room because it hurts to lie flat. So I hustle her in there before she wakes up Sly, and check her sugar. She’s running a bit high now – 13.5 (265) – probably from all that friggin’ sugar-escalating, tooth-achin’ ice cream that she consumed earlier. I give her Tylenol and a correction unit, and by 1:00 pm she’s just about in range and willing to go back to sleep.
Now, while I thoroughly enjoy (and desperately and definitely need) my beauty sleep, I have to admit it wasn’t all that terrible to sit up and watch TV at midnight, because I got to watch CSI Las Vegas, which I haven’t seen in years. Make the most of what you’re handed, that’s what I say.
When the morning comes, I tell Sly that Alex has to go to the dentist today. No ifs, ands or buts about it (‘cause we’ve been putting off a dental check-up for her for months). So we ride with the boys to school and then head into Accra to find a dentist. The good thing about living in Ghana is that you don’t have to worry about appointments for things like doctors or dentists or beauticians. They still work in the old-fashioned "Walk-ins Welcome" kid of way. So we walk in at 8:45 and we’re seen by the dentist at 9:15. Not too bad. In the states, even with an appointment, we’d probably be waiting longer.
The dentist looks at Alex’s mouth and spots a lot of trouble. Her baby teeth are wiggly, but they’re crumbling faster than they’re falling out. She’s lost a filling in one tooth, and she’s got a couple of cracks in two others. He fills what he needs to fill, and shows Sly a tooth that he’s just going to ignore because it’s too crumbled to fill and he figures it will fall out before it starts causing pain. (I certainly hope so.) Sly is a little bit green around the gills, because he’s never been to a dentist in his life and being this close to one is a little disconcerting. Sly has beautiful white perfect teeth. Oh, and his mother of 88 still has all of her beautiful white perfect teeth.
The dentist made us chuckle when he tells us that he’s glad that Alex’s teeth problems aren’t too bad and didn’t require any anesthesia, because he’d hate to have to give her a needle (Novacaine) as he doesn’t want children to have a fear of needles. We told him that needle-phobia was the least of our concerns; Alex deals with needles at least 10 times a day!
By the time we get back home it’s too late to send Alex to school, so she gets a freebie on this one. The rest of the day and that night is a non-event. That’s good. It’s lets us store energy for what’s to come.
About 4:30 am, I happen to brush against Alex and find that she’s burning up. What now?! Her sugar is in range, but her temperature is 99.7. An hour later, her sugar is still good, but she’s up to 100.2. There is no way she can go to school with a fever, so here goes another non-school day.
Another hour goes by and she’s at 101 and she’s awake enough now to tell me her “neck” is hurting – she means the inside of her neck, not the outside. Her sugar is still good, but I check her ketones and they’re at .5. Not terrible, but not giving me the warm and fuzzies, ya know? Fever is never a good thing for a child with diabetes, so today we’re off to the doctor.
Doc orders a blood count to check for malaria and a swab for strep throat, because her throat is red. The lab technician gives us another chuckle when he pulls a new lancet out of the box and tells Alex that this won’t hurt. Hah! Good luck finding an unpricked, uncalloused finger, I tell him.
The lab results come in and they’re positive for malaria parasites, and negative for strep. Oh well, can’t win ‘em all.
She’s on malaria medication, and antibiotics anyway, and Tylenol to keep the fever down which absolutely refuses to give up the ghost even as of today. The real problem is she’s got no appetite, and I hate that she’s not eating, so I give her lots of juice.
Now, when I mentioned to the local clinic doctor about giving her juice, he kind of fought me on that. He says I should give her only water, because the juice is high in sugar. To that I think, “d’oh!” “But,” I tell him, “if she’s not eating, and she’s on insulin and showing trace ketones then I’ve got to give her carbs and insulin to knock out the ketones and cover her basal.” He doesn’t really get this, but I know what I’m talking about. He suggests I call our regular doctor afterward. Good suggestion. Sly is leaning toward this doctor’s suggestion about the water drinking issue, and that’s kind of pissing me off. I keep repeating myself, “Yeah the water is fine if she’s eating, but she’s not eating and she’s got to have carbs!!”
Sly also wants me to call the doctor and see what she says. Dr. Renner agrees with me. Give her liquids with carbs if she’s not eating. I win. Good thing, because I’m a helluva sore loser.
Thursday, January 29, 2009
Alexandra Updates
I’m happy to report that the “freak show” issue has now been resolved. I was able to enlist the school’s librarian and Special Ed teacher to help me to convince Alexandra that this (giving herself her shot) was something she could and should do, and that no one would make fun or tease her for doing it. Certainly, Auntie Evelyn and Mama Caro did their best to reassure Alex that her friends were nothing more than curious and supportive. They also assured me that those children – specifically the class 5 kids who have been calling Alex “Diabetes Girl” – will get a talking to in the not-so-distant future.
Since then, about 2 weeks have gone by, and Alex has injected herself with insulin every day with no complications, and with nicer numbers. It’s really not that big a deal, unless you’re an almost 8 year old, that is. I give her 2 units of Humalog prefilled in the syringe, and since she eats almost the same thing for lunch Every.Single.Day! (blech) she doesn’t need to adjust the insulin.
About 3 weeks ago, just before the month’s end, money was really really tight. It happens here, especially when a hardworking consultant doesn’t get paid for all of his hard work, and we were down to our last vial of glucose strips. I have to admit, I was not checking Alex as often as I needed to, because I was afraid I’d run out of strips before the money came in. But eventually, we were down to our final few strips and there was no choice. We pooled all of the money we had in the house and went out to buy them. First, to Kama, since they’re the cheapest ($43 for 50 strips) – they were out. Then to a local pharmacy – they were out. Came back to Tema and tried 3 pharmacies – all were out. Finally, a so-called “wholesale/retail” pharmacy had the strips. Get this -- $65 for 50 strips. I had no choice, I needed those strips. But, boy, that hurt.
Fortunately, a few days after that, I received a huge donation of diabetic supplies from a cyber-friend in the States. Now, I have to be truthful, as you might have gathered, we’re not exactly rolling in dough, but we will scrimp and save and pull whatever money together that we need to get Alex the stuff that she needs.
One of my ideas is to make use of eBay for glucose strips. Those little things, as I’ve said before, are a money maker for companies like Johnson & Johnson. A cure for diabetes? I don’t think if they have any say in it; there’s much too much money to be made on diabetic supplies. Philanthropists they’re not. So, I’m looking at eBay but almost every seller wants PayPal. I don’t have PayPal. I used to have PayPal, but we parted ways when we moved to Ghana – a country not in favor with the majority of credit card issuers. Not my choice, but I’ll abide by it (because I have no choice). Anyway, their loss.
So, I go to my favorite CWD forum and ask if anyone can recommend a seller to me, or if anyone has any strips that they can sell me, and I’ll pay them by bank check. Well, this very nice lady named Michelle says, send me your address, I’ve got some strips that I’ve stockpiled away. I’m asking for a few hundred – 200 or 300 – which will get me through about 2 months (if that). I’m hoping that she’ll say she’ll sell them to me for 50 cents apiece or about $25 for 50 strips. That’s about half the retail price.
Michelle, though, just keeps ignoring my request for a price, and I finally get a clue. She’s giving this to me, for Alex.
About four weeks after Michelle mailed the box (first to my Mom, then repackaged and forwarded to Leslie who hand carried it), I received it here in Ghana. And I was in for a shock. It was packed – chock-a-block packed – with 700 glucose strips, a brand new ketone meter and 70 strips for that (no more hunting down urine ketone strips!), about 1200 lancets, 400 disposable pen needles, 250 glucose tabs, 2 boxes of Moo Milk, 1 box of Hawaiian Punch sugar free mix, a bag each of holiday M&Ms and Hershey Kisses, chocolate marshmallow santas and a box of Russell Stover candy. This was no small gift. This was an amazing and touching act of profound kindness. I was dumbstruck (but obviously, that didn’t translate to my fingertips). Each and every time I check Alex’s sugar or put a new pen needle onto her insulin pen, I thank the heavens for the goodness and generosity of people like Michelle.
I hope that someday, God willing, I can pay this kindness forward. But if God is really willing, he’ll cure Type 1 Diabetes first. And then let me offer my kindness to someone suffering from some other disease – like male-pattern baldness.
Since then, about 2 weeks have gone by, and Alex has injected herself with insulin every day with no complications, and with nicer numbers. It’s really not that big a deal, unless you’re an almost 8 year old, that is. I give her 2 units of Humalog prefilled in the syringe, and since she eats almost the same thing for lunch Every.Single.Day! (blech) she doesn’t need to adjust the insulin.
About 3 weeks ago, just before the month’s end, money was really really tight. It happens here, especially when a hardworking consultant doesn’t get paid for all of his hard work, and we were down to our last vial of glucose strips. I have to admit, I was not checking Alex as often as I needed to, because I was afraid I’d run out of strips before the money came in. But eventually, we were down to our final few strips and there was no choice. We pooled all of the money we had in the house and went out to buy them. First, to Kama, since they’re the cheapest ($43 for 50 strips) – they were out. Then to a local pharmacy – they were out. Came back to Tema and tried 3 pharmacies – all were out. Finally, a so-called “wholesale/retail” pharmacy had the strips. Get this -- $65 for 50 strips. I had no choice, I needed those strips. But, boy, that hurt.
Fortunately, a few days after that, I received a huge donation of diabetic supplies from a cyber-friend in the States. Now, I have to be truthful, as you might have gathered, we’re not exactly rolling in dough, but we will scrimp and save and pull whatever money together that we need to get Alex the stuff that she needs.
One of my ideas is to make use of eBay for glucose strips. Those little things, as I’ve said before, are a money maker for companies like Johnson & Johnson. A cure for diabetes? I don’t think if they have any say in it; there’s much too much money to be made on diabetic supplies. Philanthropists they’re not. So, I’m looking at eBay but almost every seller wants PayPal. I don’t have PayPal. I used to have PayPal, but we parted ways when we moved to Ghana – a country not in favor with the majority of credit card issuers. Not my choice, but I’ll abide by it (because I have no choice). Anyway, their loss.
So, I go to my favorite CWD forum and ask if anyone can recommend a seller to me, or if anyone has any strips that they can sell me, and I’ll pay them by bank check. Well, this very nice lady named Michelle says, send me your address, I’ve got some strips that I’ve stockpiled away. I’m asking for a few hundred – 200 or 300 – which will get me through about 2 months (if that). I’m hoping that she’ll say she’ll sell them to me for 50 cents apiece or about $25 for 50 strips. That’s about half the retail price.
Michelle, though, just keeps ignoring my request for a price, and I finally get a clue. She’s giving this to me, for Alex.
About four weeks after Michelle mailed the box (first to my Mom, then repackaged and forwarded to Leslie who hand carried it), I received it here in Ghana. And I was in for a shock. It was packed – chock-a-block packed – with 700 glucose strips, a brand new ketone meter and 70 strips for that (no more hunting down urine ketone strips!), about 1200 lancets, 400 disposable pen needles, 250 glucose tabs, 2 boxes of Moo Milk, 1 box of Hawaiian Punch sugar free mix, a bag each of holiday M&Ms and Hershey Kisses, chocolate marshmallow santas and a box of Russell Stover candy. This was no small gift. This was an amazing and touching act of profound kindness. I was dumbstruck (but obviously, that didn’t translate to my fingertips). Each and every time I check Alex’s sugar or put a new pen needle onto her insulin pen, I thank the heavens for the goodness and generosity of people like Michelle.
I hope that someday, God willing, I can pay this kindness forward. But if God is really willing, he’ll cure Type 1 Diabetes first. And then let me offer my kindness to someone suffering from some other disease – like male-pattern baldness.
Tuesday, January 6, 2009
"I'm not adding to the freak show."
So says Alex.
Alex has been on Lantus for about a month, and its been an interesting month to say the least. Ups and downs and me trying to snag her highs with corrections and stop her lows with juice and glucose tabs... which we're going through like crazy, by the way. But the past week, the Lantus has done something kind of weird. It's been enough for Alex for a couple of days worth, without needing extra insulin for meals. I've found that kind of bizarre, but I'll take it. Maybe its her honeymoon or just the moon in general. Whatever, it's fine, we'll deal.
But, we've still had a few days that were weird with both highs and lows, and I had to correct them. Bit, today Alex was going back to school, and in anticipation (i.e. dread) of what may come of her numbers while she's in school, we made the decision not to do anything for a couple of days and just see how it goes. I mean, Alex eats a bowl of cereal in the morning with a cup of milk, nothing out of the norm. And for lunch at school she always has jollof rice and chicken. Even if she goes a bit high, it's only a couple of days and she's home by 3:00.
So, I'm explaining to Alex what the new plan is last night, and I'm telling her that if we see that, after a couple of days, her snack and lunch readings are too high, she's going to have to give herself a shot of insulin. Her response? You guessed it (and if you didn't WTF?)... "I'm not adding to the freak show. And if you think I need insulin at lunch time, then you're gonna have to come and give it to me." Oh-kay. I'm thinking maybe it's the syringe that is the problem, so I suggest instead the insulin pen, cause it looks like a pen. Not even a second worth of consideration; still, a big fat "No way."
Hmmm. This is going to take some additional tweaking, as far as I can tell. Her numbers today are slightly out of range, not terrible, but not great. I'm going to give it the rest of the week and see if they're consistently like this, and maybe then I can figure out the right course of action. One thing is for sure, I am not going to go to school every single day to give a unit or two of insulin. Alex can and has given herself her own insulin injections... under supervision, of course. She can do it, and she needs to learn that she may have to.
Her comments really upset me, and more than just because I'd have to go and do the insulin (which I'm not going to do). I just never thought that she would see herself as a freak. I thought we (she) had this under control. Guess I thought wrong. This disease really sucks.
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