This is the story of our American-born daughter, Alexandra, a precocious 10-year old, who was diagnosed in June 2008, at the age of 7, with Type 1 Diabetes. Unremarkable, in and of itself, but we live in Ghana, West Africa. If we thought it was a challenge living in a developing country before diagnosis, believe me, we ain't seen nothing yet.
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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1 comment:
Hi Barbara,
I just discovered your blog and am really enjoying it! I am a type 1 diabetic myself and can remember going through a lot of the same experiences as you and Alex. It sounds like she is coping pretty well! I was really frustrated in the beginning because there just isn't very much literature for dealing with type 1, especially as a youth. I think your blog is a great way to generate discussion and get information out there.
I am also trying to contribute a bit and am currently doing research for my masters dissertation on the psycho-social effects of type 1 diabetes on youth. I'm focusing on (1) social supports available for patients and families, and (2) how diabetes affects a persons identity and relationships with others. I have been finding your blog particularly relevant because my research is a comparative study between the UK and Ghana. I am coming to Accra at the end of March for a few weeks to do some interviews.
Anyway, I would really like the opportunity to talk to you a bit about yours and Alex's experiences. If you're interested I can be reached by email at j.e.kratzer@lse.ac.uk.
Best,
Jillian
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