All posts by Moe

family, health, Juvenile Diabetes, medicare

The rollercoaster

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The day-in day-out background stress of worrying over
your type 1 child  is a lot like life in an earthquake zone. There are
continual rumbles as the tectonic plates shift – high blood sugars
making for raging battle out of the smallest question: “please, dear,
could you pick up your socks?”….and then when the smoke clears, you
rub where your eyebrows once were and think to yourself, “hmmmm, I
wonder if her sugars are a little high right now…”
Of course, if you’ve raised a female child through those charming
adolescent years between ages 12 to 16, you’ve experienced these
moments with just the benefit of regular roller-coaster hormonal
levels. Insulin is another hormone and it’s like adding a healthy
amount of jet fuel and lit match to the mix when everything else is
already out of whack.
So you learn to ride the small tremors, the grumbles and
stomps off, keep that smile firmly plastered in p ace as you ask, “so,
sweetie, did you do a poke recently?” dodging any objects or words or
glares hurled in your direction. Wait 5 minutes and you’ll hear the
sound of the glucometer being pulled out, the click of the lancet and
beep of the test strip…”12″ Ah. Just a tad high.

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.

education, family, health, JDRF, Juvenile Diabetes, research

Time to put my cap back on my head

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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.

education, family, health, JDRF, Juvenile Diabetes, research

It's a matter of continuing education

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The JDRF teen council for Vancouver Island put together a video to go out on YouTube as a way of raising awareness among their peer group and anyone with sufficient tech savvy to operate the site about diabetes and the upcoming walk. Our daughter is one of the teens on there and Mark was asked to help with editing the final version.

It’s a fun thing for the kids, of course and Mark likes anything that involves technology. We’ve all posted the final product on our facebook accounts and forwarded it to anyone who isn’t connected otherwise. Seems pretty straightforward.

Maybe it’s ’cause we live with this so much, so constantly, we were pretty sure it covered the bases but there is still room for a few of the old misconceptions to creep in to what it’s all about. Since posting the video a friend of ours did a commentary on his podcast about it. This is a good thing as his podcast is far more popular than ours. This is the “any publicity is good publicity” school of thought. Anyway, somewhere in his meditation he started talking about the epidemic of diabetes and how we need to pay attention to nutrition and to exercise more.

I’m sure he didn’t realize it but it sounded a lot like he was speaking of diabetes as if it was all one illness. I’m sure that wasn’t his intention and that he was leading from one thought to another without necessarily drawing a line between them. So, with all due respect, I’m gonna spin a little on this one small issue that plagues diabetics.

Hands up anyone, how many types of diabetes are there? Anyone? Hello?

Who guessed 3? And how many can be traced to lifestyle? 1- unless you consider pregnancy a lifestyle.

There’s Type 1, aka Juvenile Diabetes or Insulin Dependent Diabetes. It is the result of an auto-immune reaction by the body towards the cells in the pancreas that manufacture insulin. So far there is no known reason for it, no cause, no detectable trigger. Of course there are a lot of theories – and I’m not talking about the dancing under a full moon without one’s foil helmet theories that seem to abound – some of which tie other auto-immune diseases like rheumatoid arthritis as a possible family genetic link. Why it starts is still at the white mice and electron microscope stage.

Then there’s Type 2 or Adult Onset diabetes. This is the one that is causing all the fuss, grabbing all the headlines. It is becoming epidemic in our society and it is controllable by diet and exercise. To some extent it is inevitable because as we age our insulin production decreases and the cellular tendency to resist insulin increases. The scary thing is it is appearing in children and this is what grabs the headlines. Long story short, over fed, under exercised children are at risk of Type 2 diabetes BUT not all children who have diabetes are Type 2.

When you have an infant, however, that is diabetic you can be pretty sure it isn’t because mom was using chocolate milk for the 2:00 am feeding.

The 3rd type of diabetes is Gestational Diabetes. It can occur in the 2nd trimester of pregnancy but more often in the 3rd trimest. It looks a lot like Type 2 in that there is increased insulin resistance and an inability of the pancreas to produce sufficient insulin and may require insulin injections for the mom. The American Diabetes webpage has a decent amount of information on the subject; here’s a link to their page on gestational diabetes. I’ve used the American site because it seems the Canadian site is mostly concerned with Type 2 issues.

So, yes, it is important to eat right, exercise and take care of your body – eat leafy greens, take vitamins and cram in fibre. Every day another page gets written in the owner’s manual of this lump of mortal flesh and we really can’t afford to skip the few basics we know actually work. Eat right, get plenty of fresh air, look both ways before crossing the street and work together to keep learning as much as we can.

Oh, and to always say thank you.

family, JDRF, volunteer work

Everybody else take one step back.

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It’s been a long day and I’m wondering if maybe I’m getting in over my head. Mentoring Chair…me? you’ve got to be kidding. All these very serious women, all with good ideas and probably far better organizational skills looking at me to be the one to direct them out into the world. Okay. So, like I’ve been a parent of a newly diagnosed child too and we all go through the same range of emotions but we each handle it differently. And right now I’m wondering if I can manage to keep it all organized. I mean I don’t do such a shit hot job of that already, ya know. My house is a mess, some days it’s all I can do to sort the laundry and get supper cooked. And then work a couple of days. Maybe this will force organization on me, kind of the way bringing home yer first baby brings everything into focus…real quick.

And, like having a child, as soon as you hold the wee thing in your arms you realize that, ready or not, someone now trusts you completely. I hope I can measure up to the trust. I’ve never really had what you could call a serious approach to anything – it always seems so counter productive. It never solves anything to sit and feel full of woe – not that I haven’t, don’t get me wrong, otherwise why the hell am I taking all those different pills? Yeah, okay, so I do have a serious side but I don’t like it. Maybe it’s a matter of I just don’t want to grow up.

family, Juvenile Diabetes, research

Cap in Hand

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It’s getting to that time of year when fund raising activities start to focus on one specific event. The JDRF walk is next month and now we start going to friends and family asking them to sponsor us in this walk. It is a way to feel like we’re actually doing something.

To some degree it is symbolic but every penny adds up, y’know, and research is the only way – it is getting close – but even a million dollars here or there only pays for mouse chow, in the scheme of things. The real money comes from the pharmaceutical companies. JDRF lays the groundwork in terms of theoretical research and then big pharma steps in with money to refine it in terms of something useful to them, something marketable.

I remember way back in the late 60’s when these walk things began, the pledge was for so much per mile or per lap (when the swimathons started up). The first walkathon was 25 miles and it took place in one day and boy were my feet sore by the end of it. I was with my best friend, Mariane, we walked all over Edmonton, ate junk food and drank lots of pop. When we finally got to the end I phoned Dad for a ride home then went behind some hoarding and puked up what seemed like everything I’d eaten that day – grape, onion and garlic flavoured lumps of something formerly potato-like.

But I digress, nowadays, walkathons are everywhere for just about everything and are only a few kilometers. I’m much older, however, and find even a few klicks when going up and down and through bushes and in the middle of a big crowd just aren’t that much fun. Especially the crowd part. Being short I tend to get claustrophobic in crowds because I can’t really see where I’m going.

So, is it ethical to get people to donate money to an organization that supports desperately needed research based on the premise of walking a certain distance and then bail after walking a short way then back again? Bearing in mind one of my ankles is severely arthritic and I have mild asthma and the money is the same whether I walk 10 kilometers or 10 feet.

Now, if there was an actual relationship between the distance walked and the actual progress made on a specific research project, I’d go around that damn lake 10 times. But there isn’t. It takes a lot of pledges to feed those mice and they’re the ones that are going the distance in making change happen.

So this is the time of year to go around to friends and those family members who aren’t here and able to participate themselves in the walk, cap in hand, knuckle to forehead, asking for a few more pennies. It’s at this point in time I think to myself I hope they find the cure if only so I don’t have to go through this process anymore.