It’s World Diabetes Day. Our local JDRF Chapter is lighting up the Johnston Street Bridge…but here, for those of you that are still in the dark, here’s the newsletter we sent out about the whole thing – I’m hoping I can upload it with links intact…
blue-hoop-day-november-141 Okay, not exactly what I wanted but click on it and there’s a link to the WDD website… I think it’s all pretty cool ….
our daughter has a pump – an insulin pump delivers a steady amount of insulin via a needle that stays in place for 3 days and then is moved to a new site. At present it is the closest thing to an artificial pancreas available and it allows her to live a much more ‘normal’ life. She can sleep in, she can skip meals and she can eat a big meal (like Thanksgiving).
On regular injections it is necessary to balance meals, have snacks available and to get up in the morning by 7:00 in order to have the first needle of the day and eat breakfast. Sure, this doesn’t sound like such a tough deal and in the scheme of things, it isn’t. We tend to coddle our kids, I know that, but after coming so close to losing her, we have damn good reasons for going out of our way to spoil her now and then.
The real benefit of the pump is that when kids go on them they don’t have as many dangerous lows and it’s easier to keep blood sugars down at a decent level. Okay, in our little sugar plum’s case, she hasn’t been doing so good at keeping the levels down but that’s another issue – the good thing is she isn’t having lows and we haven’t had to phone the ambulance or break out the emergency glucose once since she strapped on the pump.
Breaking out the emergency glucose is one of those things you do when you notice she isn’t responding to questions or making any sense. Her eyes are starting to roll around and it is only a matter of seconds before she’ll be unconscious – so find candy or honey or glucose and fight to get it into her mouth. … And plan on spending the next few hours or the whole day just napping with her and getting her back on track because brain cells have died and she won’t be able to focus clearly on much for the next little while.
It is one of those things that shorten lives, leads to amputations and all the other delightful complications of diabetes. And, to get to the point here, some insurance companies providing extended medical benefits cover pumps and some don’t.
My husband’s company switched extended medical insurers recently. Guess which one we have now.Well, not exactly…they said they would cover whatever the previous company covered. When the claim went in for our daughter’s new pump it was denied. We appealed based on the fact that they are supposed to cover whatever the previous company covered. Well, it seems, in the opinion of the current company, the previous one shouldn’t have covered it, it was a mistake and therefore this one isn’t going to.
There’s an old joke from the days of the Jim Crow laws in the southern United States. An old black man is told he has the right to vote in the election and appears at the polling station. A good old boy is the returning officer there and smiles at the black man holding out his id.
“Well, boy, if y’all wanna vote, y’all gotta pass a litteracccy test. Here, read me a bit outta this newspaper.”
And he holds out a chinese language daily to the old man who takes it and looks it over for a minute.
“Well, boy, can you pass this here litteracccy test or not? … go on, tell me what it says….”
The man takes a long look at the paper and then at the returning officer, “Why sure I ken read it, suh”
The good old boy sat bolt upright and snarled “Whaddya mean you ken read it, you aint no more Chinee then I am..”
“Why look it this, see, it say right here, ‘This n-r ain’t gonna get no vote.”
I’m thinking of taking chinese lessons ’cause something tells me, we’re gonna need it for the next round with the insurance company.
Pumps and pump supplies are part of the medicare system in other provinces…that’s the difference between private medical insurance and public…Unfortunately we live in a province that is trying, by hook or crook, to move us to a privatized system.
Lots of us are gonna have to learn to read between the lines soon.
A word here of the difference between the US and Canada in blood sugar
measurements. The American measurement has a few more zeros so any
diabetic south of the border is now in a panic thinking my child is on
the verge of a terminal low blood sugar. Here normal is 5-7. 3 is low
normal and 10 is time for an insulin adjustment or 5 minutes with a
skipping rope. Here’s a converter from DiabeticGourmet.com to convert between US readings & metric (aka the rest of the world) http://tinyurl.com/owd4n.
And like life in an earthquake zone, all the tremors and rehearsals
still don’t prepare you for when the big one strikes. A friend of ours
just spent three days at his daughter’s bedside in pediatric ICU
because her sugars went so high she developed ketoacidosis. That means
because she was unable to metabolize sugar normally, her body started
to break down proteins at a cellular in an attempt to get some energy.
This process throws off ketones which change the actual ph level of the
blood. It is the condition that usually brings a child into the
hospital for the initial diagnosis and it’s one of those things that
can bring a Type 1 child back again and again and again. And, as a
parent, you never get used to it. l
We’ve been so very lucky with our daughter: since being diagnosed she has managed to stay out of the hospital. But it still makes for tremors in our lives because we’re all in the same zone.
for another year, anyway.
The JDRF walk in Victoria is over for this year and all the fund raising pressure at the family level is off for a few months. It isn’t fair, actually, to imply we are pressured to raise money – after all, what kind of parents would we be if we didn’t do whatever we could to help cure our children? The biggest benefit of the walk for a newly diagnosed family is to see just how many other people there are affected by the illness.
That’s one of the other things that never gets listed, just how isolating the experience is at first. You spend days with doctors and nurses, cloistered in a hospital and then spend months sleep deprived, working days in a twilight of worry while you spend nights waking every few hours to test blood sugars and calculating adjustments for insulin doses. Even when you go out, you are huddled with your child in the bathroom, trying to remember the current ratio of short acting and long acting insulins and getting the injections ready. People come in, people go out, they cast quick glances over at mother or father and child, the needles, cartridges, glucometer and can’t figure out what’s happening. The sight of the syringe is usually enough to drive the strangers away. They don’t want to know.
Then, after a few weeks or months of this you walk into a park filled with balloons, music, people dressed up, whole groups of people wearing the same coloured t-shirts declaring “Tommy’s Team” or “Mary’s Minders” or “Team Turbo Tess”…and different companies who have joined in the effort sponsoring tents giving away food or balloons or whatever they think kids would like. It’s a freaking festival in the middle of one of the crappiest moments in a parent’s life!
And you feel safe. You feel part of something rather than walled away from the world. I don’t know of many people who can get through the first hour of that walk without fogging up or crying outright. The demons of guilt, fear, “dear-God-why-me? I-hate-you. Please-don’t-let-my-baby-die-while-I-sleep-in-the-next-room” are chased away by realization there is a future; these people have survived those first horrible weeks and now you will too. After that the idea of raising money doesn’t seem such a bad thing.
And every year when we get our group together and show up it is the same feeling – that rush of finally finding something positive in all this, of not being the only one, of not being alone.
Even people of faith give thanks for a glimpse at God’s plan at some point during the morning. It’s a gift. And when the demons come back – because they will – you have something to cradle in your hand, hold to your heart and cling to in the dark, long nights ahead.