Time to Wake Up !!!

Like most people, as soon as I wake up I glance over to the clock to see what time it is. For me, the first reason is not to see if I’m late but rather to see if I need to get up and check Adele’s blood sugar. Sleeping in on the weekends is always tricky and sometimes is just not possible if Adele’s blood sugar is too low and she needs to wake to eat.

Lying in bed after I wake up in the morning while Michele and Adele are still sleeping, I listen and feel a certain sense of relief hearing Adele shuffle in her bed in the adjacent room. It reassures me that she has made it through the night. Hearing her move around is not a guarantee that she is not low (or high), but at least I know that she is alive. Every now and again, I read stories where Type 1 gamers are not so lucky.

After a blood glucose check (and a correction if too high or low), it’s time for breakfast. We usually tell Adele to give herself a “head start” insulin bolus before eating to try to prevent the common post-meal blood glucose spike. I then prepare breakfast. All carbohydrates must be calculated. We use a scale to weigh Adele’s food and multiply by the corresponding carb factor to give us the amount of carbs (in grams) for the portion. Immediately after breakfast, Adele gives herself the remaining insulin based on our calculations. Protein slows down digestion making the influx of sugar into the blood stream more gradual, so we try to add it to every meal when possible. If it is during the week, all of Adele’s snacks and her lunch for the day must be prepared and the carb content calculated. We then write down all of these food items and associated carb content in Adele’s pump journal in order to be able to calculate insulin doses to be administered throughout the day to cover these ingested carbs.

Managing Type 1 Diabetes requires strong math skills. We’re beginning to introduce this to Adele, but she’s still too young to be able to calculate carbs accurately unless the portion consumed is the same as what’s on the nutritional information label. She has started to estimate carb content. This approach is necessary when we’re eating out and don’t have access to her food scale or any nutritional information, but it is not very accurate and can often cause out-of-range blood glucose values. Precise carb counting will not guarantee in range blood glucose levels but it increases the likelihood. In a nutshell, that’s what the Type 1 game is all about, doing as much of what you can at all times to increase the chances of normalized blood glucose levels most of the time.

Adele now has her own cell phone and we (either myself or my wife) communicate with her many times during the day instructing her what to do (insulin doses, extra snacks to correct or prevent lows…) to manage her diabetes.

Even with such vigilance, there are no guarantees. And for the Type 1 gamers that just can’t manage or afford such vigilance… they pretty much don’t even stand a chance…

So what are YOU doing tonight?

The last thing that I do before going to bed each and every night is check Adele’s blood sugar. She always sleeps through these night time checks. Looking at the result as well as considering the amount of active insulin and prior blood glucose values, I make a decision to either do nothing if the values are “normal” and relatively “stable”, give her an insulin bolus to bring down or prevent a high, reduce basal insulin temporarily to bring up a lower value and/or give her a bit of sugar. She has developed the reflex of eating gummies while sleeping when we put them in her mouth.  Adele doesn't wake up if she goes low during the night, which is very, very dangerous.

I also need to “guesstimate” what time she will be getting up the next morning. Her basal insulin settings are set so that she receives more insulin 1 or 2 hours before waking. This is to prevent the “Dawn phenomenon” (tendancy for blood glucose levels to raise in the morning even without eating) and to give her a “head start” insulin-wise before her breakfast to try to avoid a post-meal high. The tricky part of this is that if she sleeps in, the higher insulin basal rate can cause her to go low. On the weekends, I set the higher basal rates later to avoid this. Sometimes it works like a charm, other times it doesn’t. This is not unusual, it’s just part of the game…

I then set the alarm for the nightly blood glucose check usually around 2 am or sooner if I’m not comfortable with waiting that long. I can then go to sleep.

My wife wakes up for nightly check, tells me what Adele’s blood glucose is and based on where she was at the last check before I went to bed and if she has any active bolused insulin, I tell her what to do (either nothing, insulin bolus to correct a high, lower basal rate and/or gummies to bring up a low) and then we go back to sleep…

And this is every single night… Weekends, holidays, birthdays, anniversaries, camping trips, sleep overs... are no different.

Some parents complain about nightly feedings with a new born. Those are only temporary.  Nightly Type 1 gaming activities are for life…

Type 1 Diabetes for dummies

Type 1 or Juvenile Diabetes is not caused by diet or lifestyle.  It cannot be prevented.  It's an auto-immune disease that occurs when the body's immune system malfunctions and mistakenly destroys the cells that produce insulin. 

Juvenile or Type 1 Diabetes usually strikes children and is different from Type 2 in that it can never be controlled by diet and lifestyle alone.  Since the insulin producing cells are dead, all Type 1s NEED to inject insulin to stay alive.  Insulin cannot be taken orally, it must be injected multiple times per day or continuously via a catheter inserted into the skin attached to an insulin pump.  Without injected insulin, the Type 1 diabetic would eventually slip into a coma and die.  This was always the outcome before the discovery of insulin.

Injecting synthetic insulin to replace the insulin no longer produced by the pancreas is the easy part of the Type 1 diabetic treatment.  Along with the destruction of the insulin producing cells in the pancreas, Type 1 diabetics also lose the very complex ability to maintain normal blood sugar concentration.  Every minute of every day, the non-diabetic body is automatically making tiny adjustments using various hormones...etc... to ensure that blood glucose (sugar) values are in check.  This is no longer the case in a Type 1 diabetic who has to try to manually maintain these blood glucose values as close to normal as possible.  Insulin and food are only part of the blood glucose balance equation.  Everything from nervousnous, stress, fatigue, physical activity, viruses...etc... affect blood sugar.  This makes the task of normalizing Type 1 blood sugars very difficult if not impossible.  Even if you do everything right there will be times when your blood sugar is either too high or too low...  And then there are the very scary low lows like this one.

So now, without a healthy pancreas to normalize blood sugar levels, the Type 1 diabetic is at risk whenever these levels are out of range.  Even with "good control", blood glucose values are out of the normal range often (daily or even many times during each day).  Too low could lead to a seizure or even death.  Too high will lead to long term complications such as retinopathy, amputation, kidney failure...

Insulin is by no means a cure.  It keeps the Type 1 diabetic alive and has made the disease no longer terminal, but it still is only one piece of the puzzle required to normalize blood glucose.

Out of hiding...

This blog is not dead. Let’s just say that it has been “hibernating”. My gaming strategy as of late has been acting and reacting and not so much analyzing. I’ve just been taking care of things without analyzing why or why not. I’ve been following the old Nike mantra “Just do it”.

It’s funny, because I can take a break from blogging. I can disappear from this virtual world whenever I choose to and for non-gaming followers, Type 1 Diabetes also goes away whenever I do. For gamers, it’s always there… We still deal with high blood sugars that don’t seem to want to go down even after you do everything right. We still deal with lows that make Adele feel all oozy and we still do multiple blood sugar checks throughout the day and night… every single day… and night.

As we’re getting closer to the 9 year anniversary of Adele’s diagnosis, I seem to be closer to accepting the diagnosis. What other choice do I have? But with this "acceptance" there also seems to be less motivation to keep working towards the search for a cure. I have noticed that for most Type 1 gamers, the energy put into Type 1 awareness and fundraising is inversely proportional to the number of years of Type 1 gaming. I don’t want it to be this way for myself.

In a few weeks, I will again be riding my bike as part of the national Cyclebetes relay to raise awareness and research funds for the Juvenile Diabetes Research Foundation - JDRF.  In support of this, my posts will be back to the basics, explaining what Type 1 Diabetes is and what it entails.  We need a cure and hopefully my upcoming short and to-the-point posts will help explain why.  Stay tuned...