Tag Archives: health

Looking for a face to put on this thing?

Every time someone gives me a “poor you” look and asks, in hushed tones, “how is your daughter doing?” – hesitant, as if expecting bad news…I remember it’s just a matter of education.

Cyclebetes 2010—they’re here at Gyro Park, Victoria to dip the wheels of their bikes in the Pacific Ocean. Yes, it’s cliché but if you’d ridden from Halifax, you’d be pretty damn enthusiastic about this kinda cliché too.  Some of the folk here were part of local relay segments, some did the whole shot. Cyclebetes are people with Type 1 or family members of people with Type 1. As the teams go across the country they visit schools for spin competitions and public education. Fund raising is, of course, a big part of their activity but education is also important. Type 1 and Type 2 need understanding, not pity or judgment.

Sebastien Sasseville is the first person with Type 1 Diabetes to reach the summit of Mount Everest. He warmed up with Killamanjaro and is on his way to being a member of the 7 continent club.  In the meantime, you can go to his website to keep track of his activities ’cause I get out  of breath even trying to list them all. Besides, he is gorgeous…his climbing gear does not do him  justice.

Laura Brandes, My Favourite Number,  is the go to person if you’re reaching out to the young adult community. I feel so old saying that but honestly, I am an old fart and the lights go out when I walk into the room. She’s got the energy and the authority and the perspective. She’s my hero too.

Check out Connected in Motion…these are not people who are waiting for permission to live or sitting quietly while science hunts for a cure – life is out there and they have it by the, ah…throat.

It's Blue, it has horns, I'll take it.

I have the grand title of  “Mentorship Chair” for our wee Vancouver Island chapter of JDRF. I wish it came with a big busby type hat a la “Loyal Order of the Water Buffaloes” because then I could at least look forward to doing the work.

It isn’t a steady sort of thing, you see. Some weeks go by and there are no referrals, other times there are 3 or 4 families in my in-box waiting to have a chance to chat with another family that’s been through it.   That really is all that “mentorship” means…one person who has spent the nights walking down the hall to check blood sugars talking to someone who is just starting out.

Those first few months dealing with a Type 1 diagnosis in the family are very isolating and this program is one that helps break through that barrier. Friends and family may love you and want to help and want to understand but there are times when that just isn’t enough. When a teacher thinks your little sugar plum would feel more comfortable going to the nurse’s room to have her mid-morning snack… or an in-law gives you the hairy eyeball for dishing out some jelly beans as a treat instead of an apple (even though you’ve counted them out so the carb value is exactly the same and it’s just after Halloween and the kid has been a real trooper). These are things we’ve all been through and it’s nice to hear it from someone else.

That, in  nutshell is what mentoring is all about. It’s a worthy activity. And I wish I had a fun hat to wear because it would help take my mind off the fact that I’m still dealing with Type 1 Diabetes. It may be for other people but it’s still the same illness and it takes me back, every time, to the early days for us.

For more information on the Mentorship program go to the JDRF website and if you’re on Vancouver Island, you’ll find me here...

World Diabetes Day blue circle around Banting House

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.

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

Tommy Douglas

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.