Category 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

Public/Private

For a teenager everything is private and everything is personal.  It’s part of the self-focus mechanism that get’s them through those years where the world suddenly opens up right underneath them. They go from the comfy world of puppets and nursery rhymes to body hair, kissing and the swelling desire to throttle their parents with no provocation whatsoever.

It’s at this point parents have to climb into S.W.A.T. gear and, from a discreet distance, guide this alien creature who has assumed the form of their beloved baby.

A teen with Type 1 Diabetes  will find herself discussing personal issues with her doctor and parents in the room.  These kids have learned to swallow a lot of pride and be realistic about what is embarrassing.  But still, when sugars are high or they just feel like it,  a simple question can set off a storm of mammoth proportions.

Be easy with them, take a step back and remember you are the adult in this dynamic. Then give them a bit of room…and a lot of respect.

I’m gonna go now and pencil in my eyebrows…I lost them in the great “is that your sock on the couch” explosion of  10 minutes ago…

http://www.youtube.com/watch?v=Ag4kqGr5wAU&feature=related

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.