Wednesday, October 27, 2010

It's easy to judge...

Please don’t judge our family based on how we choose to play the Type 1 game. Please don’t tell me that 12 or more blood glucose checks during a school weekday is too much. Please don’t tell me that talking with Adele’s teacher’s aid and daycare caregiver 7 or more times per day is unnecessary. Please don’t tell me that getting up to check Adele’s blood glucose at least once every single night is too much. Please don’t tell me that driving to Adele’s friend’s house at 2 am to check her blood glucose during a sleepover is ridiculous. Please don’t tell me that we’re hovering too much and should let go. Please don’t tell me how other gamers don’t test as much and still “seem to be doing great”. Please don’t tell me how easy another gamer finds playing the Type 1 game and how perfect their numbers are. Please don’t minimize what we go through each and every day to keep Adele alive. I’m not looking for pity. I’m just asking you not to judge.

Since Adele’s Type 1 diagnosis 8 years ago, I have been fully committed to do every single thing that I can to be the absolute best replacement pancreas that I can be. Rather than wallow in self-pity, I choose to gain as much knowledge and experience as I can about Type 1 gaming. I choose to become passionate about the gaming process and the cause. I choose to see the glass as half full. I choose to see opportunities instead of obstacles. I choose to be part of the quest for a cure instead of just waiting for it.

Yes, I do realize that Adele will eventually be the one playing the Type 1 game. We believe that this responsibility should be given to her little by little with Adele leading the way, letting us know when she’s ready for more. We push a bit, but not too much. As she does take on more and more responsibility, I will always be there to support and guide her teaching her all that I have learned along the way.

The purpose of this post is not to brag about how good we are at parenting and Type 1 gaming. We struggle and just like other gamers who were unwillingly thrown into this Type 1 ocean, we’re really just doing what we can to stay afloat.

The role of a parent of a Type 1 diabetic child is so much more demanding than that of a “healthy / normal” child, but we must not forget to look at one of the by-products of the Type 1 game suffering which is the depth of the relationship that is created. I honestly believe that I would not have such a close relationship with Adele without Type 1 Diabetes. Choose to embrace playing the Type 1 game instead of resisting it. It’s one of the only things that we can control…

Friday, October 1, 2010

Walking around in our shoes…

In less than 1 month, on November 1st, we’ll “celebrate” our 9 year Type 1 Diabetes diagnosis anniversary. We’ve come a long way since then. Our life is now an illusion in that it appears normal, but in no way has it become the way it once was. Type 1 Diabetes does not become easier to manage, you just get a bit better at it and a whole lot better at creating the appearance of being normal and having everything under control, but in reality you’re pretty much just winging it playing a game where the rules are constantly changing.

After almost 9 years, I still cannot say that I have fully accepted this diagnosis. I really miss the time before Type 1. I can still remember how it felt to be able to just be…. And I still really miss it. Type 1 Diabetes is a chronic disease for which there is currently no cure. Going through the motions sometimes we tend to forget that. We correct the highs and treat the lows like it’s just a normal part of life. It is for a Type 1 gamer, but it still isn’t “normal”. Adele’s pancreas is broken and no matter how vigilant we are, we will never, ever be able to do as good a job as a healthy pancreas with the treatments available today.

So what are we to do? New treatments also come with new problems. Pumps need to be worn 24/7, infusion sites get banged up, kinked and infected, Continuous Glucose Monitoring systems are often not very accurate at measuring blood. All of these treatment options MAY help Type 1 diabetics who can afford them to achieve better control, but they add a whole level of complexity to their treatment. I realized how much specific knowledge was necessary to play this game when our pediatrician kept asking ME about Type 1 treatment (instead of the other way around). I can understand why certain Type 1 diabetics never evolve beyond injections. Why doesn’t everyone (including non-diabetics) exercise regularly and eat a healthy, balanced diet? Because it takes a whole lot of work and it’s just way more simple and easier not to…

The task of maintaining excellent Type 1 control and care is in reality an inhumane task to ask of someone. 24/7 constant blood glucose levels monitoring including nighttime checks, watching and counting every single bite of food consumed along with the necessary analysis of tons of numbers to make the changes in ratios and scales necessary to deal with the body’s complex chemical changes. All of this every single minute of every day with no vacation… Ever... A higher A1C results in a guilt trip that “we could have done better”. With Type 1 diabetes care, no matter how much you “take care of it”, it really is never good enough and can always be better. Then if or when complications arise, the uninformed lay the blame on the diabetic because he/she “didn’t take good enough care of themselves”. This is the reality that each and every Type 1 diabetic faces.

During our last clinic visit, Adele’s A1C had gone down again and was one of the best to date. Her body has been cooperating, but we’ve also been testing a lot to achieve this… Like 12 and up to 15 times per day. Is this vigilance too much? How long will we be able to keep this up? We could test less, but I’m 100% certain that her A1C will go up and that there will be many more dangerous lows that we may not catch or highs that we’ll struggle to bring down. There really isn’t a definitive answer to this question. In the end you do your best and what you’re comfortable with.

For a long time, I’ve racked my brain wondering if we’re hovering and testing too much, but now I just don’t care anymore. I’m tired of feeling guilty and second-guessing how we choose to play the Type 1 game. We’re doing the best that we can given our circumstances. We’re lucky to be able to be available during the day to work with Adele’s teacher’s aid to maximize her chances of maintaining blood sugar levels as close to normal as possible. To me every avoided out of range blood sugar is an investment in her long-term health even if it means another hole in one of her fingers.

Here are some of this morning’s game highlights:

7:10 am wake-up @ 3.7 (67) – a bit too low, she ate toast with peanut butter, banana and a glass of milk, this is a different breakfast than her usual cereal so I wasn’t too sure about how it would affect her blood sugar, we bolused conservatively with 0.9 units of insulin.

9:00 am between her first and second class @ 9.5 (171) – a bit high, but the rest of the week her sugar would rise a few hours after her breakfast cereal, but then crash so my best option would have been to test again after her 2nd class and see where her sugar was at, but I opted to go with one less test (finger poke) and waited to test again before her am snack.

10:20 am before her snack @ 13.1 (236) – too high = wrong answer, I failed the test. I am absolutely certain that an extra test would have avoided this high.

Tonight we will be inserting a CGM sensor as per Adele’s request. A sensor would have enabled us to see this high before it was too late and also saving her small finger tips from those extra pricks. Some times you win, some times you lose. Even your best isn’t always enough. So goes the Type 1 game….