Thursday, November 13, 2008

Fabulicious Friday Guest Post~ Insulin Is Not a Cure

Janice and I met in grade three-in the world of sleepovers and recess, smelly felts and sports days. We grew up together and then each went our separate ways, but through the magic of Facebook reconnected a few years ago. A little while ago Janice posted a picture of her girls, each holding an insulin pump and a word that expressed how they felt about the fact that not one, but BOTH of them have Type 1 diabetes. Inspired by that photo, and I asked Janice if she'd like to share her story here in the Cookie Jar and coincidentally, Nov. 14 is World Diabetes Day!Janice and her husband Alex with their twins, Olivia and Sydni

In February of 2000, we were blessed with healthy twin girls, Olivia and Sydni. Never in my life would I have suspected that a short two and a half years later our lives would change so much.

Fast forward two years. Olivia was beginning to develop a bit of a cranky disposition. Up until this point there really hadn't been much difference in the girls. Olivia would start to get tired and whiny when going for walks. She was starting to regress slightly with regards to potty training, as she was beginning to have accidents at night. We took a trip to visit a friend in Prince George, and I recall apologizing to her for Olivia's mood swings. Little did I know what was happening to her poor little body.

Two short days after our trip, Olivia awoke very early in the morning with labored breathing and looking for anything she could drink. II decided a trip to the hospital was surely warranted by this point. Upon arriving at the hospital, I was either in a serious case of denial or such in my own calm survival mode that I was really unaware of how serious this all was. The nurse, who I truly call our angel, took Olivia from my arms outside of emergency. She knew immediately. She could smell it on her breath. She passed on her suspicions to the doctor on call.
I was told that my daughter was Type 1 diabetic.

Huh? All that I knew about diabetes was that a girl in my Grade 4 class had to go get a sugar cube every now and again. Olivia was in DKA, or Diabetic Ketoacidosis. Her body was so full of sugar and with no where for it to go, was becoming toxic. She was very dehydrated and her body was beginning to shut down. After many failed attempts to get her an IV line, the staff at our small town hospital decided to fly up a pediatrician from Children's Hospital.

I truly did not know the seriousness of diabetes or the state that Olivia was in when she was brought in to the hospital. After an initial critical 24 hours, Olivia was stabilized and we were trained in the art of caring for a child with diabetes. It was up to us to draw up her insulin and administer it 2+ times a day. It was up to us to restrict her eating and measure out her portions. This was not what I signed up for. Our lives were forever changed in an instant and would never be the same.

We did what was necessary. We didn’t like it, but we did it. We listened to friends and acquaintances say how they 'could never give their child needles'. They would if it meant keeping their child alive! Because Olivia was on injections of insulin, her meal times had to be timed and the amount of food she ate was precise. A simple trip to the grocery store where the baker would offer the girls a cookie became heartache for everyone when we had to say no because it wasn’t time for Olivia to eat. People don’t always realize how many times children are offered goodies. We would often take them home and save them for meal times when we could balance it with their insulin. Being with friends and watching their children eat whatever, whenever they felt brought about feelings of bitterness and anger towards the disease. Olivia’s twin was on the same mealtime regimen as Olivia by default.

3 years later that situation sorted itself out, and at the age of 5 Olivia's twin started peeing the bed. Sydni just didn’t do that.... and I knew. The next day I did a blood check with Olivia's meter and it came back high. NOT what you want to see. I took her in to the hospital. She was the 'healthiest' diabetic they had every diagnosed, thanks to our early detection of the symptoms. Olivia cried. She didn't want her sister to be diabetic. She knew what her twin was in for. By this point we were checking blood sugars 8-10 times a day, and giving insulin shots up to 6 times a day.

Diabetes? Slow these two down? Not likely!

Diabetes has changed so much in the past 6 years since Olivia was first diagnosed. We have learned that by counting carbohydrates in foods we are better able to manage blood sugars. We balance the amount of carbs eaten with insulin.

Insulin is produced by the body to break down carbohydrates. Insulin is like a key to open up your cells and let sugar (made from carbs) in to the cells. This is what gives you energy! Without insulin, your body just keeps the sugar floating around in your blood stream and you run out of energy as no sugar is getting in to your cells. With TYPE 1 diabetics, their body is under constant attack from their white blood cells. These are the cells that normally fight off infections and keep your body healthy. Normally. In type 1 diabetics however, the white blood cells change their thinking somehow and think that insulin is bad for your body. They are constantly killing off the cells that produce insulin. This is why we have to inject insulin into the body artificially.

So, as long as we know the carbs that are entering the girls’ body, we can balance that with insulin. Of course they can't go wild and crazy (although I am sure they would love to!); they still need to eat a healthy balanced diet. The nice thing is that they can still be kids too, with regards to the 'eating goodies!'

Our girls have both been diagnosed with Type 1 diabetes. It is VERY different than Type 2. Type 2 diabetes is so prevalent that people often misinterpret when the general term "diabetes" is used. The two types are very, very different. Type 1 diabetes is an autoimmune disease - it is not brought on by eating or exercise habits. It cannot be cured - a Type 1 diabetic is insulin-dependent for life. This is a huge source of frustration for me.

A year and a half ago, we were able to provide insulin pumps for our girls. They are approx. $7,000 machines which enable the girls to eat whenever they want provided they know the carbohydrate counts for all food eaten. The pump is an electronic device that delivers insulin through an infusion set, inserted just under the skin. The infusion set must be moved every three days. So now with the pump, it is basically one injection every three days, compared to the 8+ we were up to. No more waiting to eat!

The insulin pump has been a true blessing for our family. The girls have been able to go to birthdays and sleepovers without Mom being present for every moment! The most important thing is that it provides better control over their diabetes, which will mean a longer life for them. When Olivia was first diagnosed, one of the pieces of literature I read said that diabetics 'live on average 15 years shorter lifespan.' When I heard of the pump, and the better control over blood sugars, I knew that it was my duty as a Mom to provide this for my child. It is hard to put faith in to an electronic device, but we have learned to do so. It is hard to see your child 'hooked up' to something 24/7, but we have learned to do so.

Our lives will never be normal. We still check blood sugars 8-10 times a day through blood draw. We still depend upon insulin to keep our children alive. We know that if they have a serious low they have 30 minutes to get medical attention before death. We don't go anywhere without juice and sugar tablets, food, check kits, glucagon (emergency injection for unconscious low blood sugar), and batteries. We have learned to accept that those around us are our biggest helpers. We depend on schools and schoolmates to notice when our children aren't acting 'quite right' and to seek medical support. We are CONSTANTLY adding up carbs and communicating the amounts to our children.

We know that diabetes has affected all parts of our lives. It affects our every day, our friendships with those who ‘do and don’t get it’, and our marriage. We know that one day our girls will be 100% responsible for their own care. Until then, we carry some of that burden for them. We educate them on the importance of healthy living and open communication.

I wish I didn't ever have to know anything about diabetes. Now, because I do know about diabetes, I feel the need to educate. If you take anything from this post, remember that type 1 diabetics are not like type 2's. They can eat sugar. Our girls are now 8 years old. Diabetes is a small part of who they are. They play soccer and hockey, and they play HARD! They never let it slow them down. I am so very proud of who they are. They have endured much more than any 8 year old should have, yet they know that things could be much worse. Diabetes sucks. No doubt about it.

Insulin is not a cure.

Huge message there. It isn't good enough. We can improve on the lives of diabetics. We have faith that someday there will be a cure and we will be standing on Sir Frederic Banting's (Canadian scientist who discovered insulin) lawn when they extinguish the flame that burns in honor of Sir Banting and all the diabetics that he has helped.

When asked how they felt about Diabetes, Olivia and Sydni both wrote these optimistic words on their hands and proudly displayed their insulin pumps.

I thank Scattered Mom for asking me to post. As one of my oldest friends, and one who probably remembers the girl with the sugar cube, I thank you for giving me a forum to share my story.

Mom to Olivia and Sydni
Wife to Alex

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