Monday, March 29, 2010

Who, why and how?

As a result of seeming a bit "just ready to blow" in my last post, I felt like clarifying the who, the why and the how of the Type 1 Game blog...

I started this blog in 2008 to share what it really means to live with Type 1 Diabetes. I started it to share what it took to create the appearance of normalcy that most Type 1 gamers tend to project. I started it because there was no way that I could explain a Type 1 gamer's reality in a short conversation to someone who asked or to someone that I was trying to convince to donate and support the JDRF cause. The goal was to use it as a medium to express some of my innermost raw emotions. Hopefully some would relate and others would realize the importance of a much needed cure. I started this blog because I was no longer ashamed of playing this game.

I am not insane, crazy nor clinically depressed. I do however struggle with playing this game some times more than others. Blog posts during these times reflect these feelings. Expressing how I feel and spending some quality time at the gym, on my skis or on my bike enables me to re-establish balance during these hard times. It's a delicate balance, but it seems to be working for the most part.

I've met many, many extraordinary people through my involvement with the Type 1 community and JDRF. I've met lots of fellow gamers since beginning on this journey. I've met some gamers who have suffered a whole lot due to the physical ravages of the Type 1 game as well as others who have been gaming for a very long time without any long term complications. One similarity between those who have dodged problems are that they're constantly looking for better Type 1 game techniques and tools. They are not complacent to "just being" and accepting their fate of eventually becoming another statistic in the modern medicine database of diabetes related complications. They dare to challenge the phrase "It can't be done" or "That's impossible". They have the guts to charter the unknown Type 1 territory and simply ask "Why not?". I am inspired by these people. They give me hope. Like all great people who lived and changed our world before them, they dare to think outside of the box. They've taken their destiny in their own hands and have decided to go above and beyond what "normal" people do just because they've been told to or because they've always done it that way. So one of my goals as a father is to try to teach Adele how to enrich her life this way.

I feel cheated by modern medicine in a way. I feel that they are missing the boat in regards to the role of diet to better control blood glucose levels. I agree that the whole food topic is a delicate issue, especially when dealing with kids. If you restrict them too much, they're much more likely to overindulge once they're older and no longer under your constant supervision. But then on the other hand, they can't (or should I say "shouldn't") eat whatever they want whenever they want in my opinion. I would have liked it if we would have been presented with this reality when Adele was diagnosed and when she started pumping. I am 100% convinced that lower carb, whole food eating makes for more stable blood sugar and better control of Type 1 Diabetes. Why aren't more doctors preaching this? Is it simply an extension of our distorted concept of a "normal diet" in North America?

Those are my values and beliefs, now back to reality. Do I freak out and overreact each and every time Adele's blood sugar is out of range? No, I try my best to remain calm and make the necessary corrections. Do I totally ignore our doc's orders and start inventing my own Type 1 game rules? No, I follow our management plan all the while always looking for alternative tips and tricks. Do we only feed Adele lettuce and raw nuts? No, she eats "normal" (Gluten Free) food like most other kids her age, but we still take the time to discuss best food choices and try to give her enough information to be able to make good choices when she'll be the only one deciding what she puts in her mouth. Do we manage Diabetes or does it manage us? Is Diabetes in control or are we in control? I aim for more of a co-existance built on mutual respect.


Siobhan said...

i was diagnosed aged 2, so my parents did all the work when i was too young to understand it. how you guys (parents) do it, i'll never know. you do such an amazing job, day after day, ensuring your little girl is as safe, healthy and as happy as can be (because lows and highs can make you feel REALLY crappy as i'm sure you're aware!).

i admire any parent of a type one child. you have a job that you didn't apply for, don't want and can't quit (how i've described diabetes on many an occasion!)

Lora said...

Good for you Mike. Don't you just LOVE anonymous comments?

I think we are ALL entitled to vent. THAT'S why we blog... so that we don't "blow".

The game IS emotional. Sometimes we are on top of it and sometimes it kicks our butts. How can we not get mad?

I think you are doing great. I think that your daughter will grow up knowing that her parents were serious about her care. She will remember that you love her enough to take GREAT care of her... not that you "went nuts" doing it. :)

Anonymous said...

I apologise if my comment offended you in any way - it was not meant as an attack. My point was supposed to be that perfection is never going to happen when it comes to glucose levels, and sometimes you just have to let yourself off the hook. As we all know, sickness, stress, hormones, holidays, etc., etc all affect the numbers on the meter, and nobody lives in a bubble. We all have different ways of coping with this disease, but cope we do. My son is at the age now where I am being forced by him to back off of his management. It's not easy, but I know it is the right thing to do, for him AND for me. He may not always do things the way I feel they should be done, but ultimately as parents, that is our job - to prepare our kids, whether they have T1 or not, to fly on their own. That doesn't mean I don't lay awake at nights sometimes.
The best to you and yours,

Jen said...

I so agree with you about diet. I still don't understand why even the nutritionists specializing in diabetes that see our children are not more educated and informed about how diet affects blood glucose control. It is not acceptable to me to hear that our kids can eat whatever they want. When you strive for keeping your child in good control, that statement is so, so false!! After reading Alix's blog, I am very interested in trying to move our diet in a direction that helps keep Addison from swinging so much after he eats.

We all have our moments where we are ready to blow..I think it goes with job and it is part of why blogging and getting support back from the D community so important. You are doing a wonderful job..I know Adele will be grateful!

Chris said...

SO well put. I know how difficult it is for me to make decisions about trade-offs in my (type 1) diet, between what I want (lots of carbs), what I think I can control (not that many carbs), and what I'm almost sure I can control (almost no carbs). I can't imagine having to make those decisions for someone else. The fact that you're asking yourself those questions all the time, and willing to try new things, shows you're on the right track. It's so hard to be working against a national agriculture policy/culture and a food industry that seems designed to make life as hard as possible for people who have issues with carbohydrates.
The truth is, nobody can eat whatever they want and maintain great health (well, I guess it depends on what you want) but for type 1s, the repercussions/reminders come a lot sooner than for most. Best of luck keeping the balance. It sounds like you're doing a great job.