Category Archives: Juvenile Diabetes

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, 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.

government, health, Juvenile Diabetes, medicare

It hurts other places too

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direct costs for aproximately 1 month:

Pump supplies – infusion sets – $318

– syringes – $118.

test strips $ 75.00

insulin $135.00

Pharmacare is an interesting system. It covers some things but not others, lancets but not test strips, for instance or one type of insulin but not another. It was also ‘improved’ so that it doesn’t start covering drugs until a you’ve paid out a certain amount on your drugs. At that point it starts at a scaled percentage of the cost, gradually increasing the amount it covers.

It resets every January 1 and despite paying in over $1,200 a month with all our different prescriptions, we still haven’t hit the pharmacare threshold and it is the end of March.

A good extended medical plan helps a whole bunch, fer sure and I can’t imagine how families without one manage to cope with all the costs. Yes, it is evenutally, tax deductible but between refund time and the next year, most folk like to eat and maybe pay the rent and, believe it or not, go to the odd movie. Yes, poor folk deserve a movie now and then too.

If it wasn’t for our socialized health care system, we’d have gone under a long time ago. That is why, next to Dr. Banting, my big hero is

Tommy Douglas

But more about him later.

family, health, Juvenile Diabetes

wrestle a bear

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This was a column I wrote for the Esquimalt News, May 2005 and later used as a podcast on Babas Beach.

There is a long list of things I hate about my daughter’s diabetes. I mean things above and beyond the obvious ones of her having to puncture herself several times a day to measure blood sugars or administer insulin. Or all the things the future holds if my angel doesn’t keep her blood sugars in a reasonable range: blindness, kidney failure and limb amputation, to name a few.

Nope, there are a few other things, admittedly a little further down the list of concerns and irritations this pancreatic spanner caused when it was tossed into the general works of my life. Yes, I said “my life”. Sometimes, believe it or not, it really is all about me. If I can take on all the guilt and blame that goes along with the price of admission to parenthood, surely I can also lay claim to some sympathy time for those moments when my little bundles of joy bring home injured birds, weird friends, contagious diseases for which I have no immunity and the odd chronic illnesses for which there is no cure.

Yes, I know, she is the one with the insulin pump keeping her alive by means of a thin tube of plastic and a wicked long needle she has to re-insert every three days into another place on her tummy. She is the one who has to do the finger pokes and take insulin and get paraded in front of a series of medical professionals on a regular basis, every one of which asks the same questions and stress the same need to be vigilant about her blood sugars. Not only does she get the standard haranguing from parents about her homework, the current bio-hazard rating of her bedroom and “who was that boy you were talking to?”; she also has to put up with being reminded several times a day to do finger pokes, what was your last blood sugar, is it time to change your pump site, how many carbs are in that cookie and did you increase your insulin enough to take care of it?

Here is the true evil of this particular illness: it hits kids. From babies to teenagers it robs them of their childhood and burdens them with the dark truth of their mortality. If there is one thing I hate the most about this wretched disease it is that my daughter was robbed of those precious years of her childhood dreams of immortality. When she was 10 she had to grow up overnight and realize life could end for her in an instant.

How can this be about me, I hear you ask. Well, let me put it this way; ask any mother if she’d stand in front of a gun to save her child or face down any threat to her baby. I’m pretty sure most fathers would gladly arm themselves with a butter knife and fight a bear if it would save their little girls from one broken heart. Now, ask which will hurt more, a bullet, a bear or the knowledge there isn’t anything you can do to keep the hurt and the broken heart out of your baby’s life?

Being a parent of a child with diabetes means knowing he or she has to physically hurt themselves repeatedly throughout the day in order to stay alive. It means dealing with the emotional fallout when a well meaning adult- who doesn’t know there are three types of diabetes, two of which have nothing to do with the current catch phrase of “lifestyle choices” – teaches your daughter’s class that diabetes is caused by being fat, lazy and eating too much junk food.

Then there are those dear folk who insist on taking her or me or her grannie aside to tell us insulin only makes diabetes worse, she should be taking this vitamin or going to that naturopath or eat a diet of tofu and groats. Fortunately, my daughter has more sense than a lot of adults.

I guess it is more accurate to say we are a family with diabetes because it affects every single one of us. Even the dreaded big sister, who will smother me in my sleep for what I am about to reveal, knows she can’t protect her rotten little sister from this one cowardly bully. Hard to believe, I know but it’s true. One day at school her class was lined up for a vaccination against one of the many Ite-esses starting with the letter H. A girl in the line kept whining about why do they torture kids this way, gawd, like, the size of the needle, the pain, how sick she was last time…the usual things. My first born fixed this classmate with her patented dead fish stare and said “quit your complaining, friend, my sister has to do this four times a day. Be grateful.” She may have used a fewer words and slightly more pithy language but that was the gist of it. Now I have to go into the parent protection program.

Okay, there are a whole of things I really don’t like about juvenile diabetes. At this time of year, however, I’m supposed to be upbeat and talk about how close medical research is to actually sending this particular demon back to the seventh level of hell where it belongs. And it is; it really is getting closer every day. But close only counts in horse-shoes and hand grenades, as the old saying goes. And lab rats don’t work for free, y’know.

So, when it comes to my daughter I’ll swallow my pride, brow beat my co-workers, friends and family to pledge me in the June Walk to Cure Diabetes. Whether I like doing it or not, at least it is one way I have of actually doing something. And it is a little less painful than wrestling with a bear.

If you want more information, go to the website www.jdrf.ca . If you don’t have a computer, call the foundation, toll free, at 1-877-287-3533.

family, Juvenile Diabetes

It’s no longer “because I said so”

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How old where you when you realized that people die? And then how long did it take to sink in how permanent that change in status really is? Finally, how old were you when the penny dropped that if granny died, granpa died, your dog died and all those guppies died, then you also had an expiry date?

One of the problems with Type I is that it tends to affect kids before they’re old enough to have, in their own natural time, reached that stage of coming to grips with the concept of being mortal. This means when your child is diagnosed you have to speed the process by making it clear to them they either control their illness or they die. And exactly what that means.

Of course when they are still infants – and some are diagnosed at the tender age of 12 months and younger – you cannot make this clear to them. No, instead you must carry the fear for two. And then when they are old enough to start taking a little control over what they eat and maybe even do an injection or two themselves, then you have to, as gently as possible, as clearly as possible and as emphatically as possible impress upon them the nature of mortality to whatever limit their understanding is at the time.

For months after coming home, our daughter had trouble going to sleep. She kept asking me to lie down with her until she had dozed off. I knew the reason why but it still took time to get over the moment she told me she was afraid if she went to sleep, she wouldn’t wake up. Okay, I’ll never get over the moment: every morning when I go into to wake her, to tell it’s time to get ready for school, I hold my breath until I hear her sigh, rustle and make those sounds of waking complaint every teenager makes before putting feet to the floor.