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.

Am I expecting too much?

Just as we were getting a bit too comfortable playing the Type 1 game, the rules have all changed on us again. Looking at Adele's blood sugar values Wednesday evening, I said to myself "Wow, what a good day, the small changes that I had just made to her insulin-to-carb ratios were just right. We can totally do this. And really it ain't so bad."

Here are Wednesday's game highlights:

Wednesday, March 24th, 2010

7:00 am -> 7.1 / 128

9:50 am -> 5.6 / 101

11:50 am -> 5.4 / 97

3:30 pm -> 5.9 / 106

5:25 pm -> 5.9 / 106

8:30 pm -> 7.1 / 128

But then, things suddenly changed. Just like they always do without notice or any logical explanation.

10:00 pm -> 12.1 / 212 (too high, corrected with 0.8u)

Thursday, March 24th, 2010

2:00 am -> 10.3 / 185 (still too high, corrected with 0.2u)

7:00 am -> 14.3 / 257 (still too high, quite aggressive with insulin to correct and cover b'fast, gave 3.0u)

8:55 am -> 18.2 / 328 (still not coming down, gave another 0.5u)

10:10 am -> 7.7 / 139 (that's a bit better before am snack)

11:45 am -> 14.1 / 254 (no luck, too high before lunch)

2:00 pm -> 9.9 / 178 (coming down a bit, but still too high)

Here we go again...

Every single time that I glance down at Adele's blood glucose meter after the last beep when the result appears on the screen and I see a high number, I feel like someone has just shoved a knife right in my chest. All that I can imagine is her every organ being poisoned and attacked by the toxic high glucose blood. Images of her eyes, her kidneys and her limbs being assaulted are all that I can think about at that very moment. How would you feel if someone was physically hurting your child at a particular moment and you suddenly became aware of it? You'd likely become quite enraged (or even just "lose it") and do everything that you could to make that person stop to protect your child. Parents have been known to do pretty crazy things when it comes to protecting their offspring. And this happens to Type 1 gamers on a regular basis. Have I gotten used to it since it happens so often? No, not really. The stabbing pain that I feel at that moment doesn't hurt any less. And it also explains why I sometimes overcorrect Adele's highs by being too aggressive with insulin. At that moment, I'm usually in a state of panic wanting so bad for this Type 1 attacker to stop hurting my princess right away! My reaction is then no longer logical but rather an unconscious survival reflex.

So we're doing all that we're "supposed to". We're being "model" Type 1 gamers in the eyes of our Diabetes care providers, "doing a real good job" apparently and we're still dealing with stuff like this... And following other Type 1 blogs, I realize that we're not the only ones. Why is it that "not dying" is an acceptable Type 1 Diabetes standard in modern medecin? What about living? It may just be me not accepting this whole Type 1 life sentence, but I can't help but think that there's gotta be something better out there for our Type 1 kids...

Is it Spring already?

We've gone from winter to spring in less than 1 week in our corner of Canada. No complaints. As much as I enjoyed skiing and the other winter activities, it feels so good to be able to bike outside again. Even Adele has been asking to go biking which is usually the other way around. I know that winter isn't over yet and that we'll likely get a few snowstorms before the end of it all but I'll still take the nice weather while it lasts.

We've received the dates for this summer's Diabetes camp. I was really hoping that this would be the first year that Adele would go, but it's not looking so good. Actually, the idea is pretty much dead. I asked if a parent would be able to stay for the first night or if we could go pick Adele up so that she would sleep with us but the camp director said that wasn't possible. The only option is to drop her off and tell her "See you in a week". She really, really doesn't want to go since she rarely (ie NEVER) goes to sleepovers and she doesn't have any current friends at camp. I know that she would love it and make friends once there, but I can't go through the crying and screaming of forcing her to go and just leaving her there against her will. She goes through enough already because of the Type 1 game. Our only chance is one of her babysitters (who is also a Type 1 gamer) who is a camp counselor (or something like that?). If she would be there at the same time as Adele, then maybe (a big MAYBE) she'd be willing to give it a try. If not, we'll try again in 2011. Maybe the whole camp thing is us just being selfish wanting a week off from Type 1 gaming? Who knows?

I have an obsessive personality. My wife reminds me every once in a while and I really have no problem admitting it. I'm not compulsive, just obsessive. It's sometimes about biking, training or whatever else I have going on. Since our last Diabetes clinic apointment, I've become a victim of obsessing about Adele's A1C. For non gamers, the A1C blood test mesures the average blood glucose level for the last 3 months. What I hate about this test is that it's pretty much a setup for failure. It'll never be as good as a non-gamer. The pancreas simply does a way better job at keeping blood sugar in check compared to the human brain. It always seems to be "not good enough" or that it "could be better" or even "let's see if we can lower it even just a tad more?". Lower is supposedly better, but this has to be achieved without too many dangerously low blood sugars. I hate the test, but can't help but get caught up in the whole competition of getting a "good mark". No matter what Adele's A1C is, there is absolutely nothing more I can humanly do to help bring it down... Or maybe I should rephrase that and say that there is nothing more that I can do and still maintain sanity. See, that's where the guilt comes into play, because you can always ask yourself if you could do more. I really don't want Adele to get caught up in that guilt game... It sucks and absolutely nothing good comes out of it. The psychological aspect of the Type 1 game is often overlooked, but is still a very, very big part of it... and sadly most often this suffering is not apparent from the outside.

So, back to my A1C obsession, Adele's result had gone down a bit since the last one, but still not enough to meet the goal in my obsessive mind. Our doc suggested that she's now old enough to aim for a lower blood glucose at night. Lower numbers throughout the night should be the single change that will have the biggest bang for our buck in regards to lowering her A1C. Food intake and insulin boluses to cover them during the day make it much more difficult to maintain a flat blood glucose variation line compared to basal insulin only during the night. We already wake up every night to check, so we should be able to catch lows. Nights when we're using the Continuous Glucose Monitor (CGM) gives us an extra layer of security given the alarm that goes off when her blood sugar drops too low. We're now aiming for the 6 to 7 (108 to 126) range instead of 8 to 9 (144 to 162). The funny thing about this is that we aim for 6 or 7, but most often we're not there when she (or I) go to bed.

One of the things that I hate about tightly controlled blood sugars is the extra snacks that need to be given more often to avoid lows. I hate "force feeding" like that. We try to teach Adele to not overeat and listen to her body, but then other times, like tonight when we decided to go for an unplanned bike ride, she NEEDS to eat something before heading out to avoid going low. Sometimes I just wish we could... just go for a bike ride without obsessing about the numbers !

The highs and lows of skiing

Sleep. If there is one thing aside from a cure that I could change in the Type 1 games rules, it would be that "real" sleep would be allowed. Being able to just go to sleep, uninterrupted with peace of mind would be the the first ammendement that I would make... if only it worked this way...

For non-gamers out there, a popular analogy of what night time is like for a Type 1 gamer is the nighttime feedings that you go through with a young baby that persist beyond the baby years. I like to compare it to those nights when you're caring for a child sick with the flu. Times when you're planning to go to bed and you notice that your child is burning up. The last Tylenol dose isn't working anymore. You give some more but can't sleep until the fever goes down a bit. After all, such a high fever like this is dangerous and needs to be watched closely. You're worried that the symptoms will get worse and that the fever medication will be enough to keep the temperature down. If it does get worse, you know that it surely means a trip to the emergency room. You finally fall asleep exhausted, but quite uneasy because of the uncertainty in not knowing how your child's body will react to this flu virus and medication. You end up waking up a few hours later in a panic and can't get back to sleep without checking on the child to see if the fever has broken. You wake up the next morning very tired and go through the motions of starting your day...

I remember feeling an overwhelming relief when Adele would get over a flu like this before we started playing the Type 1 game. "She's finally over it, we can finally stop worrying and get some much needed quality sleep tonight" is what I'd say. Type 1 gamers never get this relief. They never experience this closure. They never get to move on. Type 1 players never get over their Diabetes. It's chronic. Life is spent walking on thin ice and you never know if or when you're going to fall through...

Adele has been asking to go snowboarding for a long while now. This desire of hers gained momentum during the Olympic games. An opportunity came up last Saturday so we headed out to our local ski hill. Adele opted for skis but I gave the snowboard a try. Adele had never skied and I had never snowboarded. As the saying goes "Snow = Low", so we were anticipating less insulin and extra snacks to keep low blood sugar at bay. Adele was high before lunch (12.0 or 216). Since we were still home and had a 1.5 hour drive to the hill, I gave her full lunch bolus. I wanted to bring her sugar down and we'd have a snack before heading out to the ski lift. We tested again when we arrived at the hill and her sugar was even higher (18.0 or 324). Crap ! Was it the excitement? Was it a bad pump site? Who knows? I gave her 1.0 units of insulin and no snack and we proceeded to burning off this excess sugar on the ski hill. Two hours later she had gone down to 8.3 (149) and was hungry so she ate a Fruit to Go bar and gave herself 0.4 units of insulin. At 5:45 pm her sugar had slowly dropped to a very good 6.5 (117). The Type 1 gods were finally cooperating. We ate, bolused and got another hour in out on the hill. We tested just before leaving for home at 7:30 pm and her blood glucose was 17.2 (310). Crap ! I guess skiing doesn't affect her blood sugar as much as other winter outdoor activities? Maybe "Snow <> Low"?

We got home late at around 9 pm. Adele's sugar was coming down (9.0 or 162). She ate a small bedtime snack - some crackers and fruit. We didn't bolus and she went to bed. At 10 pm she had dropped to 3.6 (65). We had never experienced a delayed sensitivity to insulin like this before. Her sugar was dropping and we were having a hard time getting it back up. About 60 to 70g of carbs later, 2 hours pump suspended and 5 or 6 blood glucose checks through the night with a lowest low of 1.9 (34), she pretty much slept through the whole thing (she barely remembers drinking the juice just before midnight). She woke up at 8:15 am the next morning at 6.5 (117) and I threw myself out of bed and started going through the motions of the day...

Bittersweet

I had been bitter about Diabetes in the past few weeks. My friends will be leaving in about a month for a cycling vacation in Virginia. Over a week of just biking, eating and sleeping. My idea of a "perfect" personal vacation. I missed it last year, but our family vacation to Florida during March break with a bike ride every day before or after visiting the parks made up for it. Again this year, I won't be going on that Virginia cycling vacation. The reason is not money (it would be a very cheap trip) or being able to take time off work. The reason is Adele's Diabetes. Adele is just not independant enough for me to be away for that long.

Adele was diagnosed with Celiac disease and Type 1 Diabetes a few months apart when she was 2 years old. My wife naturally took the lead on the gluten-free diet by researching what she could and could not eat. I on the other hand was better with numbers given my education and work experience and I naturally took the lead on the Diabetes management. I make all of the changes in Adele's insulin pump basal rates and snack and meal time carb ratios. My wife applies the math based on the this plan. Adele's control is not perfect, but we seem to need to make many small adjustments quite often to help try to keep things in check.

I felt guilty that I wanted and needed a vacation from playing the Type 1 game since Adele can NEVER take a vacation from it, but I still felt bitterness and self-pity because of my situation.

I usually have a hard time watching any type of sporting event whenever Adele is around. She always wants to watch her "programs" on the Disney channel. But with the Olympics the past 2 weeks this was not the case. She was very, very interested. She was asking to watch every single night. She was asking all types of questions in regards to the games and I was taking advantage of this by explaining the various sports as well as what it takes to make it to that level (not that I personally know what it takes, but rather what I think). The very structured life of an athlete training for the Olympics is not very different than that of a Type 1 gamer. The athlete follows a strict schedule of sleep, healthy eating, intense training and sacrifice often including giving up the care-free adolescent years to follow your dream. I try to explain this to Adele because in essence it's very similar to playing the Type 1 game. All of these characteristics are what make a successful Type 1 gamer.

Last weekend, Adele and her mom went to Halifax with friends for a mini March break vacation. I didn't go since I had to work on Monday. On Sunday night, after the Canada versus USA men's hockey final for the gold medal, Adele called me. She wanted to tell me all that they had done during their first day in Halifax - swimming, shopping and gluten-free pizza supper. And she also wanted to talk about Canada's overtime win in the men's hockey final. She knew that I would have watched it and wanted to recognize the hard work and the "never give up" attitude that the players had to come up with the overtime win. That's when I realized that my "talks" were not lost and that what I have been preaching is really sinking in. Yes, as a Type 1 parent I am forced to never be far from her to keep her safe, but the result of this is a huge opportunity in helping her become the best that she can be. Type 1 Diabetes has prompted me to develop a closer relationship with her than if it wasn't part of our life. Adele told me that she is going to go to the Olympics when she grows up. She is going to compete in swimming. That made me feel really proud. Not because it's my dream that she actually does make it to the Olympics, but rather the fact that she has the confidence to believe that she CAN.

My cycling vacation to Virginia will have to wait for now, I'm still too busy shaping Adele's future... And to other Type 1 parents out there, your Type 1 kids ARE listening and all of the hard work that you're doing is WORTH it !

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.

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 !!!

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: http://www.d-mom.com/type-1-tuesday-oprah/ 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?

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. http://www.oprah.com/showinfo/Americas-Silent-Killer

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?

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 !

http://www.d-mom.com/d-dad-mike/

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

It ain't just a "day game" ya know

As the alarm clock went off at 6:30 yesterday morning, my whole body felt trashed and really wanted and needed to sleep. I had ridden the bike for 1.5 hours the night before and had just crashed as soon as my head hit the pillow. My wife had gotten up at around 1:30 am to check Adele's sugar. This always wakes me up. She tells me where Adele's blood sugar is at. Since I'm the one tasked with doing the last check at night before I go to bed she consults with me to see if we need to give Adele insulin to correct a rising blood sugar or if she needs to eat to avoid or correct a low. She was 5.1 (92) coming down from 6.9 (124) when I went to bed. I told my wife to set a temp basal on Adele's pump stopping her basal insulin delivery for 1 hour (the pump automatically starts injecting insulin again after the hour has expired). My wife then asked me if she should also eat a bit and I said no. I was very tired and just wanted to sleep. She should be okay. But then in my tired, half-asleep stupor, I started second-guessing myself. Will no basal for 1 hour be enough to avoid going low? She doesn't have her Continuous Glucose Monitor (CGM) on so there are no alarms that will go off if she does go low.

The next thing that I remember is the alarm going off again. It was morning. The absolute first thing that came to my mind was Adele's blood sugar. Was she low? Was the diminished amount of insulin at 1:30 am enough to have avoided her to go low? Her basal is much higher prior to waking up to avoid the typical morning blood glucose rise (dawn phenomenon), if she was already lowish, was she now dangerously low? I listened, but couldn't hear her moving around in her bed. Half asleep, I found myself doing lots of math in my mind trying to convince myself that she was okay. My brain was telling me to get up and test, but my body was just laying there motionless. I was awake, but really still mostly asleep. After hitting the snooze button a few times I finally threw myself out of bed and headed directly to Adele's bedroom to check her blood sugar. She was 7.4 (133). My guesstimate last night was good...

For any non-gamers out there, you might think that this is an isolated incident. You may think that it's one of those nights that every parent goes through every once in a while like when their child is not feeling well with the flu and/or fever. For a Type 1 gamer, this is our reality pretty much each and every night.

How long will it take?

Almost 7 years and 3 months - that's how long we've been playing this game. We've learned alot since we started. We've adapted. We've surprised ourselves by learning how to give insulin injections using a syringe. We've learned how to prick a finger to measure blood glucose. We've learned and understand how to use an insulin pump. I'm still learning how to get the maximum benefit from using a Continuous Glucose Monitor (CGM). We've recently learned that cold (an icepack) applied to a freshly removed pump infusion site really helps alleviate itching. We've learned that old pump infusion sites can get infected if they're itched too much (Adele's thigh is much better now thanks to the oral anti-biotics). And I've learned how to make basal insulin and meal carb ratio changes without the help of the diabetes clinic nurse or doctor.

As much as the above list is long and that things like getting up multiple times some nights to check Adele's blood sugar seem a bit easier than they did in the past, I still haven't accepted Adele's diagnosis. I'm not as bitter as I once was. I don't get as upset with non-Type 1 gamers who simply don't "get it". It's much easier to go through the motions than when we started playing, but I still can't fully accept Adele's life sentence. I think about it alot, I mean I have to whenever she is in my care. The other day she just looked at me with her big eyes and I just found her so beautiful, the most beautiful 9 year old ever, she was perfect, she was daddy's little princess... with a serious chronic disease called Type 1 Diabetes. It just kills me.

Thanks for listening...

What If part deux...

Wendy had a good point in her comment on the last post. Her exact words were "Maybe people with diabetes feel like life is too short not to enjoy the foods you like the most". I'm sure that for some this is true. Do you eat to live or live to eat? Yeah, I enjoy a good meal, but I also thrive on being fit, healthy and feeling good. The latter always wins over the former for me, so I guess I eat to live.

Check this blog: http://michellestype1diabetes.blogspot.com/. The choice of food that Type 1 gamers put in their mouth may have a greater effect on control than we're made to believe...

What if ?

When Adele first got diagnosed with Celiac disease in the summer of 2002 we had never even heard of the condition. The doctor told us that it could not be cured and that there was no medication that could be taken to control it. The treatment was quite simple - a gluten-free diet for life and her bowel would heal and she would be back to "normal". Food is the medicine.

A few months later came the Type 1 diagnosis. The treatment in this second round of chronic auto-immune disease diagnoses was a bit more complex - she'd need to inject insulin for the rest of her life (little did we know then that this was actually the "easiest" part) all the while trying to balance food intake and exercise with this injected insulin in presence of other uncontrollable processes that can and will throw off this delicate balance at any given time. I remember the doctor telling us that her immune system was mistakenly destroying the cells that produce insulin, but that she could still basically eat whatever she wants as long as she gets synthetic insulin injected to cover the carbs (thus replacing the insulin that her body no longer produces). They made it seem rather simple. I'm not sure if it was to allow us time to mourn and not overwhelm us from the start? Or if they're like many other "book smart" medical experts with no real-life, 24/7 Type 1 gaming experience and really didn't know any better. They were (and still are) basically preaching that we should be able to play the Type 1 game without any dietary restrictions (well, except for Gluten in our case because of the Celiac disease). It's with this knowledge that we began our Type 1 journey. **One thing to note here is that Adele was 2 and 1/2 years old when she was diagnosed, I'm not sure what they'd tell an adult as far as recommended diet?

But what if we apply more of the "food as medicine" Celiac philosophy to the Type 1 game? After all, food is controllable, along with exercise and insulin dosage, and a big part of the Type 1 balance equation. What if part of our Type 1 gameplan is to only eat foods that work with our bodies instead of work against it? For me and Adele (and anyone else with Celiac disease), any food that contain gluten triggers our bodies to work against itself by causing damage to our bowel and make us sick. What if a Type 1 gamer would eliminate foods that wreak havoc on blood sugar and make them sick? I've always wondered how much of an effect that this would have on Type 1 blood sugar stability and control.

If it were me I'd give it a try without hesitation. To me, a low carb, whole food, high protein, no dairy diet would seem to make so much sense as a winning Type 1 game plan. It would be difficult to adapt at first, but so was the gluten-free diet when I first started and now I have no problem whatsoever following it since I feel sooooo good on it. It is worth all of the effort.

So, I'm still not the one with Type 1 diabetes and Adele is still just 9. At her age she just wants to be like everyone else, so I'm not pushing this on her right now. It'll have to come from her if she is to adopt this way of life. Right now we're teaching her about healthy eating, mostly by example, while trying to limit the "junk" food but still letting her be a kid as much as possible. Maybe we're missing the boat? Maybe modern medicine (the pill pushers) are missing the boat? Damn, I wish I wouldn't question myself as much...