Happy Birthday Dr. Banting

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 ….

Private Insurance

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.

putting it in perspective

1. CVN-78 Gerald R. Ford – first of new class of super-aircraft carrier “Ford Class” – hull laid 2007 – $8 billion (not including $5 billion R&D) will carry >75 fixed wing jets. powered by 2-AIB nuclear reactors.

2. F-35 Lightning II fighter jet under development – cost per jet (in 2006) $83 million.

3. Queen Elizabeth Class carrier – Royal Navy – to replace the Invincible-class light carriers – will be equivalent to US Nimitz class carriers and carry 36 F-35’s. Current estimate on cost of carrier ₤3.7 billion – not nuclear powered.

Estimate of JDRF Canada in a request to the Government of Canada of research funding sufficient to bring about a cure for Type 1 diabetes = $125 million.

So next time you see a picture of an aircraft carrier or a fighter jet or even a tank (M1A2 Abrams = $4.3 million) remember it represents money that didn’t cure diabetes or cancer or cystic fibrosis or Alzeheimers or…or….or…

It’s another reason to sniffle when you see a kid selling lemonade to raise money for JDRF

Now I realize we need these advanced weapon systems to protect ourselves from all those other advanced weapons systems out there the bad guys bought at a clearance sale from the people who are designing even newer ones for us but, gee whiz, maybe if we all stopped…Of course, that is just silly, fuzzy headed idealist stinkin thinkin. But maybe if we diverted just a little of the money we spend on thinking up new ways to blow people up better, faster and from further away…?

The rollercoaster

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.

Time to put my cap back on my head

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.

It’s a matter of continuing education

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.

Everybody else take one step back.

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.

Cap in Hand

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.

It hurts other places too

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

But more about him later.

wrestle a bear

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.