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 !