Category Archives: JDRF

Diabetes, family, JDRF

Oatmeal?

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Continuing in the Island Parent JDRF Youth Ambassador profiles, here’s 2009. I’ve added some images because, well, it’s my blog and I can…besides, it makes it easier to plow through all the text…

Tomas Kalyniuk, 8, wants to be the best goalie in the world; Jessica Schmidt, 8, plans on being a singer, dancer and, if she’s lucky, a clown; Jacob Thomas, 10, is torn between being a martial arts specialist or a massage therapist. At first glance, all they have in common is their shared role as Vancouver Island’s Telus 2009 JDRF Youth Ambassadors.

 The other thing they have in common is lack of surprise about people with Type 1 Diabetes climbing Mount Everest, playing in the NHL or winning Academy Awards. As Tomas says, “Well, yeah, of course they can do whatever stuff they want: they just have to take their insulin and test kits.”

 Carmen Welta, Tomas’s mother, laughs when she talks about how she tried promoting Bobby Clark to her son as a role model. Bobby was diagnosed when he was 13 but went on to fight attitudes of the day by playing in the NHL on the Philadelphia Flyers. Diabetes never stopped him from being the most famous of the broad street bullies and a Stanley Cup champion.

 Tomas knows all about Bobby Clark constantly sipping sugar laced cola on the bench and “peeing on a stick to figure out what his blood sugars were, like, maybe hours ago.” All it means to him, however, is technology has made life for anyone with Type 1 a lot easier.  Bobby did what he had to do and Tomas fully expects to do the same.

 Jessica learned about Type 1 Diabetes in kindergarten when a nurse educator talked to the class. The next year a well informed teacher picked up on her student’s sudden frequent trips to the bathroom and excessive thirst; she knew this wasn’t an attempt to disrupt classroom discipline but the warning signs of a chronic illness. She phoned Jenny suggesting a trip to the doctor for Jessica might be a good idea.

 “I didn’t know there was a difference between this and Type 2…I thought she could take pills for this. Jessica knew all about it:  ‘no mom,’ she told me, ‘I’ll need to take needles every day.’”

 Even today in this country children die because these early warning signs are ignored by the adults in a position to help: education and understanding go a long way in saving lives as well as improving the quality of life for Canadians with Type 1 diabetes.

 Susan Thomas became concerned when her son, Jacob,  spent play dates rummaging through friends’ refrigerators and suddenly having night time incontinence. When tests for another problem revealed high blood sugars one day but normal the next her own doctor said the boy was too fit, too healthy to be diabetic. Weeks later, giving in to Susan’s pressure the doctor did another blood test. The next day the locum called Susan saying she had to get Jacob to the hospital as soon as possible. “There’s a bed in the ICU waiting for him.’”

 It’s always a shotgun start for this new life as a family with Type 1. Carmen spent the first weekend in hospital with Tomas, waiting to talk to the dietician, wondering the whole time if her son could have a cheeseburger ever again. Tomas snickers at how his mother was convinced he’d spend the rest of his life on a diet of oatmeal and milk.

 Jacob and Tomas wear insulin pumps and Jessica is happy with the control from new long acting types of insulin. They know they are living a better life than was possible even 10 years ago and that Canada is the world leader in research and technology for Type 1 Diabetes.

 “We want a cure”, Carmen points out, “but in the meantime technology is making life better.”

 Research is their one hope for a future without the certainty of neuropathy, amputations, kidney failure, heart disease, blindness. Imagine being a 10 year old child who knows not only what these words mean but they are a certainty in your future.

Now imagine you can make a difference.

Diabetes, family, JDRF

Not your imagination, they are getting younger…

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This is the 2011 June Island Parent magazine profile of the JDRF youth Ambassadors I wrote.  Over the next few weeks I’ll put up profiles from previous years.

The first years of introducing an infant to the world have special challenges. In those precious first few months a new mother finds herself second guessing every cough or sniffle: is it diaper rash or an allergic reaction?

There are the obvious moments, when the baby spikes a fever or projectile vomits across the room. There is no special knowledge needed at that point to reach for the car keys and head to the hospital. But what if the baby is breast feeding more frequently, always hungry and soaking through more diapers than maybe she did the week before. Is this just another growth spurt or is it just the sleep deprivation talking, dear. You’ll feel better after you have a nap.

A week before Christmas, 2010, 11 month old Tula Stanley, who never napped, suddenly wanted to lie down in the middle of the day.  When she woke 3 hours later she didn’t want to eat and began to vomit. Wondering if it might just be a bug Samantha waited till the next morning. Tula was still sick the next morning, listless and not responding in her usual active way. They went immediately to their doctor.

On hearing Samantha’s brother Travis was diagnosed as a Type 1 diabetic at 6 years of age, the doctor immediately sent them on to the hospital. It took 3 hours for the medical team to find a way to place an intravenous line in the 11 month old baby: shaving her head and finally going in surgically to reach a vein in her upper thigh.

For the first 4 days it was necessary to weigh Tula before and after breast feeding in order to calculate the amount of insulin she would require. From that the staff worked out the carbohydrates Tula was averaging.

Nearly 6 months later, Tula is thriving: active and awake every two hours through the night to nurse. During the day, well, she has returned to her no-nap schedule and is charging headlong, halfway to her 2nd birthday. The other day Samantha saw her daughter standing in front of a mirror, trying to look at her insulin pump and where the needle goes under the skin of her little rump.

A year and a half ago Kristina’s 17 month old son was getting ready for all the changes a 2 year old faces. Then he began drinking large amounts of water and nursing almost constantly; Kristina felt herself being completely drained.

Initially the doctor assured her it was just a behavioral phase. After another 10 days of nursing and repeatedly changing Amos’s diaper through the night, Kristina insisted on Amos being tested.

By the time Kristina got home there were two messages from the doctor and one from the lab insisting Amos go directly to the hospital.

These tiny patients mean doses of insulin too minute to measure with a syringe.  Amos was 17 months old when he started on an insulin pump.  He still complains about finger pokes and needle changes but at 3 he is an old hand to it all.

There is hope for these young ones, however. They are living at a time of tremendous leaps in Type 1 Diabetes research: what causes it, what can be done to ‘turn off the switch’ and how to reverse the damage it causes.

Samantha sees a huge need for education so people can understand her baby did not bring this upon herself with a diet of candy and video games.

Kristina wants to tell families just starting to live with Type 1 that it does get better.

Samantha and Tula
Amos

education, health, JDRF, type 1 diabetes

Looking for a face to put on this thing?

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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.

Diabetes, family, health, JDRF

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

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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
Diabetes, family, JDRF

It's good to go for a walk around the mental blocks

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The experience of Type 1 Diabetes is collective and individual at the same time.  Everyone who has Type 1 will experience these events/symptoms/effects. Everyone who cares about (and provides care for) a person with Type 1  will also experience common events/symptoms and effects.  This is not news to anyone. It happens in just about every chronic illness and in the families who find this unwelcome guest in their homes. And hearts.

The annual fundraising “Walk to Cure Diabetes” …or as we must now call it, “The Telus Walk to Cure Diabetes” – welcome to the world of branding, it can be a building or an event but you too, with enough money, can own a temporary place in history – was in June and the amount of money raised has just been announced – Victoria $135,000; Nanaimo $35,ooo; North Island $35,000 for a Vancouver Island total of $205,000. That will buy a lot of rat chow.

The benefit of this event, however, goes so much further than the fund raising.  One of the biggest effects of a diagnosis of Type 1 on both the person diagnosed and their family, is the sense of being torn out of the world. This morning gives back a sense of community. Even if you don’t know anyone else at the event you see the other families and they still have dogs, other kids and the sun still shines on us all.

walking along Beaver Lake Beach

If this sounds familiar, it’s probably because I’ve written before in this blog about the walk, in 2008… I just wanted to bring it up again because I have been neglecting this blog so it seemed like a good place to start up again – on a positive note. Also it is something that is worth talking about again, even briefly, just to point out there are high points in life with Type 1.