Monday, February 22, 2010

Type 1 gamer Kris Freeman

Millions and millions have been tuning into that thing in Vancouver - the 2010 Winter Olympics. To me the Olympics represent the essence of what living really is. By living I don't mean existing, I mean really, really living life. The Olympics represent setting a goal and working towards achieving it. The basis of moving forward. It's not only about cheering for your own country, but recognizing the efforts of each and every athlete towards their quest at becoming the absolute best that they can be. As human beings we're all born with this thing called potential. Olympic Gold medalists are born each and every day. Only a few of these will develop these skills and capabilities. The others won't. It's far too easy to take the "comfortable" route. I am always moved by those who make the decision to leave this "comfort" zone and dare to tap into this potential. It's often a dark and scary place with many unknown obstacles. Not everyone has the guts to go there.

US nordic skier Kris Freeman does. After having been diagnosed with Type 1 Diabetes and being told by his doctors that his skiing career was over, he refused to listen. This was just another obstacle in his path that he would learn to overcome. No one had really ever done what he is doing, nordic skiing at the world class level while playing the Type 1 game.

On Saturday, February 20th, during the 30k pursuit XC ski event at the 2010 Olympics he had done everything that he could to prepare for the race including attempting to make the proper insulin adjustments for the effort. He usually nails his basal insulin and carb intake during races. It's a tricky formula. Aside from training, rest, recovery, choosing the proper ski and wax, Kris also needs to "dail in" his insulin / carb intake. And in order to perform at a World class level, blood sugar levels need to be "dead on" - too low and his muscles don't have enough fuel to function whereas too high and his muscles can't produce maximum power output or rid lactic acid. In order to win, he HAS to get it right. Easier said than done when you're playing such an unpredictable game where most of the time you're really just "winging it". There are absolutely NO guarantees.

The dosage used was the same as what he had successfully used in a past race not too long ago. That's the best that he could do - base his decision on experience and "hope for the best" really. Everything was going well in the first 3rd of the race when suddenly it wasn't... His blood sugar dropped and he could no longer continue. Laying on the side of the trail, asking for much needed sugar until a german coach gave him fast acting glucose. His race was over. Gone in an instant.

Then Kris did what playing the Type 1 game has forced him to do many times before. As soon as the fast-acting sugar kicked in and brought his blood glucose level back up to a "normal" level he got back up and finished his race... in 45th place. Not exactly the result that he had hoped for... but far more impressive than the non-Type 1 gamers that finished on the podium that day.

If there's one thing that I can hope for Adele's future is that she will dare to live like Kris... Then I'll know that she will be okay.

Monday, February 15, 2010

How little did I know...

31 years old. That's how old I was when Adele was born. With a normal pregnancy and no history of Type 1 Diabetes in our families and healthy living habits we saw no reasons whatsoever to worry that Adele would not always be the healthy bouncing baby girl that she was the day she was born. My only knowledge of Diabetes was very general (and full of misconceptions). I knew that it had something to do with sugar (ie not being able to eat any?) and injecting insulin in certain cases. I had a childhood friend's brother who was diagnosed at around 8 years old, but the whole disease and it's treatment was very vague to me.

That all changed on October 31st, 2002. No known family history of Diabetes (either Type 1 or Type 2) wasn't enough to stop what was happening. Adele's immune system started attacking and destroying the cells in her pancreas that produce insulin. There was nothing anyone could do to stop it. Type 1 Diabetes did not care if we had "healthy living habits" including regular exercise, that we didn't smoke or ate a "healthy" diet. It didn't care if we were in better condition physically than most North Americans. Adele was diagnosed as a baby at 2.5 years old. I know Type 1 gamers who were diagnosed younger, others diagnosed as pre-teens, teens as well as adults. No one is immune to Type 1 Diabetes. It can hit anyone at any time no matter how healthy, fit and thin you are.

One thing that I have learned since we were forced into playing this Type 1 game is that there are lots of diseases, some curable, some chronic, some fatal that normal people get diagnosed with each and every single day. These people are not different from you and I. Like these diseases, Type 1 Diabetes doesn't only happen to "other people".

For the longest time I was ashamed to tell people that Adele had Type 1 Diabetes. The many Diabetes misconceptions that had been carved in my head affected how I perceived others would judge us and Adele in regards to her Diabetes. I worried about what others would think. I felt like I had flawed her since one of my auto-immunity genes was certainly unknowingly passed onto her and quite possibly played a role in her getting Type 1 Diabetes. I was afraid that she would be ridiculed or excluded because of her condition. I was afraid that she would be judged given the stigma that people get Diabetes because they ate too much sugar and didn't exercise enough. I felt stupid not telling people who didn't already know, but I also felt stupid simply adding "by the way, Adele has Type 1 Diabetes" during an unrelated conversation.

It took some time, but these feelings eventually started to go away. As Type 1 gamers, it is our duty to create Type 1 awareness and education. Getting involved is part of the healing process. So don't just sit there, get out there and tell someone about Type 1 Diabetes !

Oh yeah, in case you've been asleep for the past while, the 2010 winter Olympic games are happening in Vancouver. It's the first time that Adele has an interest in the games and actually asks to watch it with me. Go Canada !!!

Wednesday, February 10, 2010

I should just let it go... but...

There has been lots of talk and blogging about the Oprah Diabetes episode. Here is a very thorough list of blog posts about the show: on the D-Mom blog.

Adele overheard me discussing the show with my wife the other day and asked why I now "hated" Oprah (not that I liked her before, but I didn't "hate" her either). Whenever we're discussing anything at all and she is around, she always tries to eavesdrop (serious discussions can only happen after she's asleep). I explained to her that Oprah had dedicated an entire show on Diabetes but hadn't spent enough time differenciating Type 1 and Type 2. I told her that Dr. Oz had really just reinforced the misconception that all Diabetes are the same, that it can be reversed and that it's basically the sufferers own fault. We had had a similar conversation with Adele before trying to explain the differences between Type 1 and Type 2 after she had heard comments about Diabetes (Type 2) on TV. It is very, very important for me that Adele knows that it's not her fault whatsoever that she has diabetes. Kids hear things and often interpret them in a bad way when they don't fully understand the circumstances or what's being said. I do not want Adele to internalize that she caused her Type 1 Diabetes by not always eating healthy food or that she could have somehow prevented it. She's insecure enough as it is without hearing all of these general Diabetes comments and stories which are really meant for Type 2 and not Type 1. But she is 9, and when she hears the word "Diabetes", she listens carefully to what is being said since the big D is such a big part of her life.

Misconceptions about the Type 1 game are so common and a constant source of frustration for Type 1 gamers. How many times have I been told by non-gamers that they know what it's like to live with Diabetes because their elderly father or their dad's aunt or their grand-mother have it as well. Then I ask if it's Type 1 or Type 2 and they look at me and say "Is there more than one type?" I then ask a few questions like when they were diagnosed, if they're on insulin and 99.9% of the time it's Type 2. Then I try to explain that it's not the same. How many times have I tried to explain that Adele's diabetes is not "real bad" because she's on insulin or because gets tested over 10 times each and every day? Adele is at an age where we can't always "protect her" from these confusing general Diabetes comments and messages. She's like a sponge carefully absorbing all of this information. She's old enough to understand part of what's being said, but too young to make the difference between what's true and what's not in her case.

This is the psychological part of the complex Type 1 game that we play. Who said it was just about blood, counting carbs and needles?

Thursday, February 4, 2010

Dear Oprah and Dr. Oz

So Oprah decides to dedicate an entire show on Diabetes. Here are the headlines that she had on her website:

Dr. Oz's Emergency Wake-Up Call: Millions of Americans have it now—by the time you feel symptoms, the damage is done. Dr. Oz reveals how you can stop America's silent killer: diabetes.

So what's so wrong with this?

Two and a half years old. A baby. That's how old Adele was when she was diagnosed with Type 1 Diabetes. She did not get Diabetes because of any bad lifestyle habits. She did not get Diabetes because she ate too much candy or drank too much pop. She did not get Diabetes because she didn't get enough exercise. She was a baby for god's sake! She ate a normal diet according to the Canadian Food Guide, pretty much the same thing as every other baby living in North America who did not get Diabetes. Her Diabetes could not have been prevented. She got Diabetes because of a faulty immune system that mistakenly destroyed the cells in her pancreas that produce insulin. It's not any different than the child who gets cancer. Like cancer, Type 1 Diabetes IS NOT PREVENTABLE. Like cancer, we don't really know why some people get Type 1 Diabetes but others don't. Type 1 Diabetes cannot be cured. Type 1 Diabetes cannot be controlled by diet alone. Type 1 Diabetes cannot be reversed. And Type 1 Diabetics need to inject insulin to stay alive.

All you needed to do was spend more time explaining this difference between Type 1 and Type 2 instead of using the general term "Diabetes and being part of those who reinforce the misconception that "all diabetes are the same". It's difficult enough to raise funds for Type 1 Diabetes research in our current economy when soliciting people who understand the Type 1 vs. Type 2 difference and nearly impossible soliciting misinformed people who think that Adele's Diabetes is our own fault.

The next chapter...

I've been freaking out, having anxiety attacks and episodes of panic. I try to breath deeply and relax when I feel it coming. It happens ever so often whenever I see a bunch of teenagers. Yup, that's the trigger. I become anxious because this is what is just around the corner for us. I'm noticing that things are starting to change already. Adele is starting to want to only wear certain brands of clothing, she makes up her own outfits to wear to school, she'd like to wear bigger earrings (like in the picture) but we don't let her except for a few pics of her "modelling" them at home. Yes, Adele is only 9 and I shouldn't rush things too much, but if I look back at how fast the last 10 years have gone by, well you know what I mean... Shouldn't I be doing something more to get ready for this? Or is it just best to not think about it and let it happen... and then see what happens?

As difficult as it is to be gaming right now, technically we have it quite good. At 9 years old, we still have pretty much 100% control over what Adele does, eats and the insulin that she receives (she's socially immature for her almost 10 years of living because of her Diabetes). She's old enough to understand most of the Type 1 game rules, but we're the ones making the decisions. We're pretty much 100% in control of her diabetes at the moment. It's by no means easy, but we've become comfortable with it for the most part. It is now our normal.

But this is about to change sooner than we think. Adele will want and need to become more and more independant in life as well as in her Type 1 care. Will she be able to make the right decisions? Will she love herself enough to continue to take care of her Diabetes? Adolescence is a tough time for everyone, now add the Type 1 game into the mix and you've got potential for disaster.

What can we do to motivate her to continue to take her Diabetes seriously? What can we do to encourage accountability? How can we maximize the chances of her becoming a "responsible nerd"? Will we be ready for this new chapter?

Monday, February 1, 2010

D-Mom blog

Leighann Calentine is the author of a very, very informative Diabetes blog called the "D-Mom Blog". Her daughter was diagnosed with Type 1 Diabetes in 2008 just before her 4th birthday. Her blog contains tons of useful information for parents of children with Type 1.

Leighann was kind enough to feature me and The Type 1 game on her site as part of her "featured D-mom" Monday post. Thank you Leighann !

Also be sure to visit other areas of her very informative site. It's well worth it !