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...

Dear Thursdays, we need to talk...

Dear Thursdays, what have we done to you for you to treat us this way for the last 2 weeks. First, the cannula from Adele's insulin infusion set pops out in the middle of the night and now another old infusion site that gets infected on Adele's thigh. I apologize if we have done something to offend you. Let's please try to get along from now on. And, please pass this message on to your friends Monday, Tuesday, Wednesday, Friday, Saturday and Sunday.

Yours truly,
The LeBlanc family

We have still not received a reply back, but are hoping that we can put this whole mess behind us.

Here are a few game highlights since last Thursday... Adele came home from school and said she had a hard time walking because her left thigh really hurt. It started after lunch apparently. I had noticed that her sugars were creeping up a bit, but wasn't too worried at that point. When we looked at her thigh it was very red, swollen and there was even puss coming out of the canula insertion hole. It didn't look good at all. We tried to clean it up as best as we could with Hydrogen Peroxyde, applied some Polysporin and covered it up. Adele started feeling sick before going to bed and had a slight fever and I needed to up her insulin to keep the sugars in check.

The next morning, the fever had gone away, but her thigh looked worse. The area was like 6 inches wide, very, very red, tender and sore. We knew at that point that we needed antibiotics so we went to the clinic and got it checked out. At this point Adele's sugars were pretty much out of control. Basals were at 150% and her meal / snack boluses were pretty much double what they were the day before and still her sugar would not go below 12.o (216). Have you ever written a test where you had absolutely no idea what the answer to a certain multiple choice answer was? That is how I felt trying to figure out basal insulin rates and meal carb to insulin ratios. It was a complete guess. She went from 18 - 19 units of insulin / day to 33 - 34 in a matter of hours and was still running high. Fun times playing the Type 1 game...

Guessing insulin dosages doesn't really make for good nights. Friday night was the worse, we were up to check her sugar 4 times. Needless to say, I was tired and cranky on Saturday morning. After being high all evening, she started to go low after midnight, so I had to keep reducing the basal insulin and give her a few carbs here and there to avoid the lows. Her pump Continuous Glucose Monitor (CGM) alarm woke us up at 7 am on Saturday with a low alarm. I'm pretty sure that she would have slept in, but she had to eat and once awake, the day had started...

After a few bad weeks with the CGM we had decided to not bother with it last week, but Adele wanted a CGM sensor so we inserted one last Monday. We were very happy to have the sensor because unlike past weeks, this CGM sensor was accurate throughout the whole adventure which was very helpful in these of "your guess is as good as mine" days of Diabetes management.

So now her thigh is better, but still red and tender to the touch even after 3 days on antibiotics. We dropped in to see the doctor this morning and she told us to continue with the current treatment, but to drop back in Thursday to make sure that the infected area continues to get better. Sugars have stabalized with the changes that I have made in the last few days and I don't feel like I'm guessing insulin doses as much anymore. Fun times...

So, there you have it... Our latest adventures in Type 1 gaming... I'm having a hard time staying positive and finding the love these past days, hopefully things will turn around soon...

Numbers

I remember the Diabetes nurse telling us to not get too caught up in the numbers during our pump start session back in 2004. I'm still not exactly sure how to do this? It's impossible to play the Type 1 game without the numbers. Where a non-gamer may see a delicious (gluten-free) kids meal, we estimate a number of carbs (and hope we're right). Up to 15+ finger pokes each and every day in order to give us another number - Adele's blood glucose at that very moment. The Continuous Glucose Monitor (CGM) displays a number every 3 minutes - Adele's blood glucose mesured using interstitial fluid. Then there's the Hemoglobin A1C test that we do every 3 months which gives us another number - it translates to the "average" blood glucose for the last 3 months. How can I not get caught up in these numbers since they are such an integral part of the whole game?

Maybe the Diabetes nurse recognized my perfectionism and simply wanted to help me overcome my obsessiveness with trying to achieve tight control all of the time? Maybe she was trying to encourage us for when we go through the next inevitable losing streak? Maybe she didn't want us to compare our "numbers" with other Type 1 players? I don't know and maybe I should have asked, but didn't for some reason. I was likely way too caught up in all of these numbers !!!

We're in the last month of 3 before our next A1C. I'm not sure what to expect. I think we'll improve from the last one of 8.0. I'm really not even sure why we bother getting this test done 4 times per year. Like my wife told me, no matter what the result is, we can't really try harder. We're already doing the best that we can while still managing to maintain a certain level of sanity. I also hate reading about other Type 1 players results because, well... I can't help but comparing with ours. I know that I shouldn't but I still do. It's like comparing report cards at school. We often tend to take these results as a personal defeat (or victory)... The major fault with the A1C is that it does not reflect blood glucose variations. Highs are cancelled by lows, so a good A1C may not necessarily be the result of good control but rather many, many low lows between highs. So, what does it give us really? I remember reading about a young diabetic asking his doctor if his A1C was good enough to avoid blindness and the doctor simply said that he didn't know. There is no "magic number" that guarantees complication-free living. Why bother? It may just be something that motivates players to try to continuously improve? Or it may just be something for the docs to write in your file for the lecture the next time your A1C isn't where it's supposed to be?

Here are the game highlights of the past few days...

Thursday, January 7th

After a day of fairly good numbers - between 3.6 (65) and 11.4 (205), Adele's sugar started to creep up and just would not come down. A very high blood sugar of 25 (450) was explained once we realized that Adele's infusion set had popped out. She was no longer receiving any insulin at all. These things only happen in the middle of the night and are fixed with an insulin injection via syringe followed by a new infusion site insertion. A few more blood glucose checks to make sure the sugar is coming down and Adele woke up at 7.3 (131). She went to school and we went to work. I had about 3 hours sleep (in short intervals), so Friday was a very, very productive day:-)

Friday, January 8th

Adele's sugars were between 2.8 (50) and 13.6 (245). The 5 day old CGM sensor was not reading properly (it didn't catch the 2.8 low) so we took it out.

Saturday, January 9th

Adele's sugars were between 3.6 (65) and 11.0 (198).

Sunday, January 10th

Adele's sugars were between 3.1 (56) and 10.5 (189).

Monday, January 11th

Adele's sugars were between 4.0 (72) and 8.5 (153).

I really, really hate to say it because the Type 1 gods are surely listening, but we're on a winning streak. We're gonna sit down and enjoy the ride for now, cause you know that it's all gonna come crashing down eventually. It always, always does... Will we be ready for impact?

2010... Bring it on

Happy New Year! and Happy New Decade! So much has changed since the last new decade. First, the world didn't end because of the Y2K bug (I work in the IT field, so this was discussed A LOT leading up to well, nothing:-)), then Adele was born in the early part of the decade. Then, Adele got sick and diagnosed with Celiac Disease, then I got diagnosed with Celiac disease and felt better even if I didn't really know I was sick then, Adele got sick again and got diagnosed with the ultimate multi-tasking game called Type 1 Diabetes, we were forced into playing this game including holding down your own child to give her a needle in the very first week (not much easing into this one and we even got to practice this fun needle exercise 4 times every day in the beginning), then we learned how to play using an insulin pump and even this year we got our hands on a new game weapon called a Continuous Glucose Monitor (CGM). Some things about the Type 1 game have not changed much since we started, but other things have evolved quite a bit thankfully. So, what's in store for this new decade that we have just begun? Better Type 1 tools? A cure? Adele will be 19 years old at the end of this decade. What will her life be like in 2020? Hopefully we can be a positive influence on her and are able to give her the necessary tools and knowledge to enable her to thrive and survive independantly... It's gonna be a long climb!

We've been on a CGM vacation this past week. Adele was with either myself or my wife (or both) pretty much the whole week so we (actually Adele) decided to go sensorless. Her skin is so "raw" because of all of the itching that we're starting to worry about running out of insertion spots. Skin real estate is at an all-time low! It felt good to let her skin heal by reducing the number of foreign objects inserted into her epidermis from 2 to 1 (as well as the accompanying sticker to hold the hardware in place). The weird thing is that the week without the CGM was actually the best as far as blood glucose control that we have had in a long time. She had a few lows mostly in the 3's (from 54 to 70 in US units) and not many highs. This winning streak was not due to us doing a better job. The body suddenly starts to cooperate and becomes "predictable". It just happens some times, kindof like a streak of nice, beautiful weather. You can't plan for it to happen, but you sure as hell appreciate it while it does.

We inserted a new CGM sensor Sunday evening in preparation for back to school. After a day of good readings, Adele's low blood sugar alarm went off a few times this morning during her Phys. Ed class. I have the feeling that she's going to voice her frustrations with the system when we get home tonight. I'm still not sure about the CGM, on the one hand it does give us a head's up before a low or high occurs, but it is soooo frustrating when it's off. Arrrggghhh!!! Today's highlights are:

January 5th, 2010 (during and after Phys. Ed)

9:00 am -> CGM reading was 6.5 (117)

9:25 am -> alarm went off, CGM reading was 4.5 (81) with on arrow down, gave a juice

9:45 am -> alarm went off again, CGM reading was 4.0 (72), meter was 8.7 (157)

10:25 am -> alarm went off again, CGM reading was 3.6 (65), meter was 7.5 (135)

This past weekend we were over at friends for supper. After the meal, one of their children just walked up to the fridge, opened the door and poured herself a big glass of chocolate milk. She drank the entire glass with no clue whatsoever of all of the complex work that her body (pancreas) was about to do to maintain a normal blood sugar. She didn't know what her blood sugar was before drinking the milk, how much active insulin that she had in her system, how many carbs were in the chocolate milk or what insulin to carb ratio that her body needed. She didn't care (and didn't need to), she just wanted a glass of chocolate milk. The parents didn't quite seem to notice or care either and just kept doing what they were busy doing. For most people this whole series of events is very normal and would go unoticed. A 12 year old girl who pours herself a glass of chocolate milk and drinks it, what's so exceptional about that? For me and my wife it made us really miss the days before the Type 1 game. We both noticed it as it was happening, and talked about it later when we got home when Adele was asleep. Since Adele is an only child, this doesn't happen in our household even if she is technically old enough to be able to prepare her own snacks without supervision. No one realizes all that their body does to keep their blood sugar in check until it doesn't anymore. The start of a new decade is a time to look forward and work towards a positive future, but damn that very, very simple act that most people take for granted made me miss the days before Diabetes...