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.

"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.