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….


Anonymous said...

Thats D1 for you. Just when you think you have the knack, you get pummelled. I guess the trick is to not let it get you down - to realize that even when you try your best, things don't always go the way they should, and to keep on keepin on. One day at a time, sometimes it's one hour at a time -til there's a cure. Just know Mike that you are not alone in the trenches. We can relate.


Sarah said...

I appreciate your honesty and how you're not sugar coating any of this. I have a two year old with t1d and have had many nights of no rest due to testing so frequently to make sure a high has come down or a low has come up. I can't even get my family or friends to begin to understand the vigilance necessary just to keep him safe. This last visit with his endo his HbA1C went up significantly and I wanted to sob on the spot, for the past three months we've tested and treated more lows and highs than ever. We've had no breaks and are even constantly battling insurance to cover the test strips so that we can test as frequently as necessary. It has been awful. But you know what, he's usually happy and that makes it worth it. Those moments where it all aligns and he's just a regular two year old without another poke or extra insulin, then I feel like I did something right.
Keep up the hard work and thanks for sharing with us all :)