When life messes with your game plan...

I've made a few basal insulin adjustments the last few nights that seem to be working pretty good. Last night, as we were getting ready to go to the Dieppe Volunteer appreciation ceremony at Mathieu-Martin, Adele tells us that she feels low. This is less than 1 hour after supper, so a low so soon after a meal is quite unlikely. We test and yes she's low. Her sugar is 2.7. Not sure where that came from? So the rush to get ready for the Volunteer ceremony suddenly changed to a rush to give Adele some much needed sugar. How dare life (going to a Volunteer appreciation ceremony) make us lose our Type 1 game focus! We forced her to drink a juice and eat some crackers. Low blood glucose means sugar starved brain cells which means a very unreasonable 8 year old. "I don't like that kind of juice!" is Adele's reply, while we're fumbling to get her to eat / drink anything at all to litterally save her life. The rest of the day was quite good, but like always the 2.7 after supper is just Type 1's way of reminding us that it's always there just waiting for a chance to bite.

Here are yesterday's game highlights:

Thursday, April 23rd, 2009

1:20 am = 9.1 (good, we aim for a bit higher sugars during the night to give a buffer in case she drops while everyone sleeps)
6:50 am = 9.9 (a bit high, corrected before breakfast)
8:55 am = 10.3 (still highish, gave another 0.2 units of insulin)
9:50 am = 4.3 (awesome value before am snack)
10:50 am = 6.9 (very good)
11:45 am = 7.3 (also very good before lunch)
1:30 pm = 11.2 (highish, but didn't give any insulin - lunch insulin bolus still active, will wait until 2:45)
2:45 pm = 10.1 (going down slowly, I didn't correct before Adele got on the school bus to go to daycare)
3:10 pm = 5.9 (very good before pm snack)
5:00 pm = 6.4 (very good before supper)
6:25 pm = 2.7 (where did this low come from? gave her 20 grams fast acting carbs, supper insulin bolus is still very active)
6:40 pm = 4.6 (out of danger, going up but maybe not enough, gave her a Dex 4 glucose tablet)
7:30 pm = 9.6 (going up too fast?, gave her 0.3 units of insulin to prevent a subsequent high)
8:50 pm = 8.1
9:50 pm = 6.2 (going down too much?, turned off her pump for 30 minutes hoping to create a slight upward trend)
10:40 pm = 7.5 (looking good)
11:05 pm = 9.3 (going up too fast now, guesstimated that 0.35 units of insulin will reverse this, gave her the insulin and went to bed)

Friday, April 24th, 2009

1:10 am = 8.9 (very good for nighttime, no intervention needed, thank you Type 1 gods - we can go back to sleep!)
7:15 am = 7.8 (good before breakfast)

Next Thursday, April 30th, Adele and I are looking forward to attending the UPS JDRF fundraiser kickoff event. Have a good weekend everyone !

Thank you UPS

I had the pleasure of speaking with 2 small groups of employees at UPS here in Moncton today during my lunch hour. The purpose of the presentation was to give a personal perspective of what Type 1 is in conjunction with the JDRF Walk to Cure Type 1 Diabetes on June 7th. Thank you very much UPS for choosing JDRF as your charity of choice and thank you to each individual UPS employee who chooses to fundraise and participate in the walk. Your support is truly appreciated. Such initiatives will enable research to continue and bring us to a cure sooner. Like I said in a previous entry, we have huge plans for that day... I can already picture it in my mind, smell it, taste it and feel it. We're that close... For us, it will be the ultimate dream come true! I can't wait...

Adele's new insulin pump arrived early this week. There is nothing wrong with her old one, but the warranty ran out and our insurance company was willing to pay for a new one. Total price was $7200. Ouch! Thank god for our insurance! I have alot of reading up to do to fully understand all the functionality of the new system. The new pump came with a software package, wireless download capacity from pump to PC and also has Continuous Glucose Monitoring. A sensor inserted under the skin reads blood glucose every few minutes and the wireless transmitter sends this data to pump wirelessly. The pump displays a graph of the blood sugar for the past few hours. The pump does not automatically adjust insulin doses based on blood sugar though. A human intervention is still necessary to manage it all. How is this going to help us play the Type 1 game? It will save Adele finger pokes to check her blood sugar. It will also make it alot easier to check her sugar in public places or during various daily activities. We will also be able to set alarms that will go off if her sugar goes low or too high. We're quite excited! More posts will follow as we move forward with the new system... Stay tuned.

Adele's sugars have been on the good to highish side this week. Her sugars have started to shoot up during the night again though the last few days. Adjustments are necessary I think. I hate making changes in the night insulin doses because it means more testing and uneasy sleep since I am always quite unsure of how things are going to go the first few days after a dosage change. Monday night (Tuesday morning) her sugar went up to 17.3 @ 2:00 am. Last night (this morning) her sugar went up to 18.4 @ 1:15 am. I obviously needed to give her insulin to try and correct both times. 0.65 units of insulin last night brought her down to 9.6 before breakfast (still a bit high). After floating between 10 and 14 all afternoon (this is too high) and finding some blood in her infusion site (catheter that delivers insulin), we decided to change the infusion site even if it was only there for 2 days. The new infusion site brought her sugar down to 7.6 before her bedtime snack, so I think it was a good decision. I'm still not sure how things will go tonight. I haven't decided yet if or what changes I will make to her basal insulin doses throughout the night. I'll make a decision after seeing how stable her sugars are with the new infusion site...

Being unpredictable is the only thing that is predictable.

Thanks for the comments... There seems to be 2 categories of people reading this blog: caregivers like myself who manage their children's Diabetes and friends who want to learn more about the disease. I will try my best to discuss topics that will benefit both. The initial idea behind the blog was to share and explain what we go through on a daily basis to keep Adele alive and able to have as normal a life as possible. It was not to get anyone's pity. I am not a big fan of pity. But if it does comfort you and make you feel less isolated because you're going through the same thing, then I'm very happy to help. If you haven't been chosen to become a Type 1 gamer and it gives you an appreciation of what it really means to be a player in a not so fun game, then I'm very happy for that as well...

Last weekend at our family Easter gathering, Adele ate one bite of Turkey, one bite of a carrot, 2 big scoops of mashed potatoes and some candy (mostly chocolate) for dessert. This doesn't really seem like the best lunch for a diabetic right? The funny thing is that her sugars were perfect all afternoon following the feast. Her sugar was floating in the 7's (7.3 then 7.2 then 7.6) for about 4 hours after the meal with no afternoon snack. Now, a few days later she has a few rice cakes, a banana and some organic (no sugar added) healthy cereal with skim milk and her sugar shoots up to 19.5! So what's my point? Put her on an all-chocolate diet? I don't think so (although Adele would be all for that :-)). My point is that playing the Type 1 game is very, very unpredictable. I was actually reading that a few years back researchers had experimented with Type 1 patients living a very structured life for a week. They went to bed and woke up at the same time each day, they exercised (same workout) and ate the same foods at the same time each day and gave the same doses of insulin. Even given this unrealistic structure, their blood sugar still fluctuated. One day it would be good at a particular time, the next it would be either too high or too low. Why? Because the body is a very, very complex system. Stress, emotions, hormones, genetics... are some of the complex variables that cannot be controlled (or explained by even the best doctors) and obviously have a huge effect on blood sugar control.

The last 2 nights have required 2 blood glucose checks instead of the usual 1. We're somewhat used to getting up once but the 2nd time is tough! It would seem that we've somewhat adapted to chronic sleep deprivation. I'm not really sure what the long term effects of this is... Highlights of the last 2 nights are:

Wednesday, April 15th
10:00 pm = 7.9
10:50 pm = 9.1 (sugar was climbing a bit so I gave 0.1 units of insulin and went to bed)

Thursday, April 16th
12:30 am = 16.4 (too high, gave 0.5 units of insulin)
2:40 am = 19.5 (still way too high, gave 0.8 units of insulin)
6:50 am = 11.2 (still high, corrected and gave a head start on breakfast bolus before eating)
8:45 am = 9.9
9:45 am = 10.2 (before am snack)
10:45 am = 9.8
11:50 am = 7.9 (before lunch)
1:30 pm = 12.2 (climbing a bit but her lunch insulin bolus hasn't peaked yet, so did nothing)
2:40 pm = 14.4 (too high and lunch bolus has already peaked, gave 0.25 units before taking the bus)
3:15 pm = 7.9 (before her afternoon snack)
4:15 pm = 7.3 (playing outside at daycare, gave her 2 crackers to avoid subsequent low)
5:10 pm = 6.3 (before supper)
7:05 pm = 7.0 (before bedtime snack)
8:30 pm = 6.6 (before going to bed, going down, turned pump off for 1 hour)
9:50 pm = 6.9
10:45 pm = 7.2 (pretty stable, snack bolus is gone, so I went to bed - she should be good right?)

Friday, April 17th
1:20 am = 16.7 (way too high, why did she suddenly go up like this? - gave 0.7 units to bring sugar down)
3:15 am = 15.4 (still too high, gave another 0.6 units of insulin)
7:00 am = 6.2

Not sure why her sugar has suddenly began shooting up like that after 11 pm. Must be those complex uncontrollable variables. It's quite the game that we play...

Easter gaming and support groups

Gaming this week had us dealing with some ups and downs. Adele's sugars were OK if I did an average. They were either on the highish side (9 and above) or borderline low (in the 4's right before bed). I couldn't seem to find patterns that enabled me to make changes to stabalise things...

Yesterday's highlights are:

1:25 am = 12.3 (high, gave 0.25 units of insulin)

7:45 am = 16.0 (way too high, I gave her 1.8 units of insulin and waited 1 whole hour before giving her breakfast thinking this would bring her sugar down)

8:45 am = 12.6 (still high, the 1.8 units should have brought her down more than that, she must be insulin resistant for some reason?, she ate breakfast and I gave her more insulin)

9:55 am = 11.4 (at least she's going in the right direction - down)

11:00 am = 6.3 (finally a normal value, she ate a snack and I bolused for it)

11:35 am = 1.9 (she came to see me and said she felt low, I saw she was pale but would not have guessed that she was that low! Values in the 1's and 2's really, really make me sick to my stomach and are dangerous... Adele immediately drank a juice and had a Dex4 glucose tablet)

11:55 am = 5.8 (OK, she's out of danger for now)

1:00 pm = 11.2 (right before Michele dropped her off at her friend's house, after the 1.9 that morning, I was very, very uneasy leaving her at her friends house - her dad does not know how to manage Adele's diabetes)

2:10 pm = 14.7 (too high, sugar seems to be climbing still, gave her 0.25 units of insulin - she's still at her friend's house so we can't be too agressive with insulin)

3:30 pm = 9.6 (ate her snack, bolused with 0.5 units of insulin, still at her friend's house)

5:20 pm = 4.0

The 1.9 was really unpredictable, her breakfast bolus was pretty much gone and she had eaten like a half hour before. Luckily she came to see me and told me she didn't feel good. I'm really not sure she would have done the same at her friend's house given that we weren't there. A simple visit to a friend's house for an 8 year old kid with Type 1 is often a VERY SCARY experience for her caregivers...

And now to the next topic for this post: Type 1 Support Groups. If you're newly diagnosed (or your child is newly diagnosed), I suggest that you join a support group. I didn't always feel this way. At first, I felt as if everyone else but us seemed to find playing the Type 1 game a piece of cake. This actually made me feel worse since I felt like I must be doing something wrong. Adele's sugars surely aren't perfect. I hate comparing numbers (and this is so easy to do with Type 1 Diabetes), but seeing real blood sugar values (including the ups and downs) along with success stories are what has helped me the most. That's why I don't sugar coat anything here. I don't care who you are, every single person playing the Type 1 game has his or her ups and downs which is why insulin is NOT a cure. Type 1 Diabetes was once a terminal disease, the discovery of insulin has just made it chronic instead of terminal. Once I realized that perfect numbers all of the time are just not possible no matter how good of a Type 1 gamer that you are and that we must rather aim for as good as possible, then I enjoyed conversing with others that really do 'GET IT'. Like Christiane said in her comment (April 3rd post), there is some comfort in this...

Spring flu season

We’re happy to see the snow melting at this time of the year. The fluctuations in temperatures seem to breed cold and flu viruses though. Adele woke up with a stuffy nose yesterday morning indicating that she’s likely fighting one of these bugs. This has also affected her blood sugars. The very good numbers we were dealing with on Saturday have been replaced by high numbers :-(

Weekend highlights…

Saturday, April 4th, 2009

1:35 am = 6.1 (turned off her pump for 1 hour)
7:00 am = 4.2
9:10 am = 6.9
11:41 am = 5.8 (lunch at McDonalds, yes we can eat there. We rarely go, maybe once every 2 – 3 months)
1:15 pm = 4.1 (going down way too fast, good thing we checked, she would have surely gone low. Gave her a juice and turned off her pump for 1 hour)
2:20 pm = 7.2
3:05 pm = 8.0
5:20 pm = 5.1
8:00 pm = 6.1
10:00 pm = 5.3 (going down, turned off pump for 1 hour, hopefully she’ll start going up again)
10:30 pm = 4.8 (pump off for 1 hour was not enough, gave her 8g of carbs and went to bed)

Sunday, April 5th, 2009

1:10 am = 7.4 (very good number, but I still turned her pump down a bit (-70% for 1 hour) in case she sleeps in tomorrow morning)
7:40 am = 11.1 (a bit high)
9:00 am = 14.3 (high, I did not correct we were going for a bike ride, I thought the exercise and active breakfast insulin bolus would bring it down)
9:40 am = 11.8 (still high, now I corrected with 0.3units of insulin above morning snack bolus)
11:15 am = 16.1 (still climbing, corrected with an additional 0.55units insulin)
11:50 am = 13.5 (going down, but still too high, corrected again before lunch)
1:55 pm = 6.4 (very good, but will it drop even lower?, ate snack)
4:10 pm = 5.8 (still like 1 hour before supper and her snack bolus was still active, so I gave her 8g carbs to prevent her from going low – hypoglycaemia)
5:15 pm = 15.7 (8g carbs at 4:10pm would not have been necessary, it was too much, corrected before supper)
7:25 pm = 17.7 (way too high, corrected again before bedtime snack)
8:20 pm = 13.6 (going down which is good)
9:15 pm = 15.6 (going up again, flu is making her insulin resistant, gave 0.9units insulin)
10:00 pm = 15.2
10:35 pm = 11.3 (dropping a bit too fast and I really want to go to bed, turned off pump to hopefully cause her blood sugar to stabilise or drop more slowly)
11:00 pm = 11.5 (pump off seems to have slowed down this drop, turned pump back on and went to sleep)

This morning Adele woke up at 13.1. This is too high, so to make sure that it isn’t due to a bad infusion site (catheter that delivers insulin inserted under the skin) we changed it this morning before going to school.

So, the game plan for today is to look at yesterday’s sugar patterns throughout the day and make adjustments to try to keep things in check. Here we go again…

What's in a word...

Until today, I used to hate the term "diabetic". Maybe it was a symptom of me not fully accepting Adele's Type 1 diagnosis, but I interpreted the term as if Adele WAS Type 1 Diabetes. She HAS Type 1 Diabetes, but that's not all there is to her. She is so much more.

So why did my thinking change today? It came to me on a bike ride this afternoon. The feeling of freedom just flying down the road on my bike was amazing. My legs and whole body working together to propel this machine was perfect I thought. I will continue to ride as long as my body will let me. I need to. I am not just someone who rides a bike, I am a "cyclist". That's when it hit me... Playing the Type 1 game is not just something a Type 1 "diabetic" does off and on, it's part of life 365 days a year, 24 hours a day without any vacations. It's constant ups and downs are ALWAYS there. And this is nothing to be ashamed of. Actually, if you're a "diabetic" or a second-hand "diabetic" like I am, be proud! You're a survivor playing one of the most complex games in the world... Not many people could do what you have been chosen to do.

My advice to the anonymous reader who left a comment on the Gettin' it post from March 25th is to hang in there. I won't lie and tell you that it becomes any easier, but you'll slowly learn how to be more effective at managing it. With Adele, her sugars are not more stable than they were in the past, but as she grows older, she now understands that sometimes she needs to drink a juice even if she's not thirsty or not eat when she's starving. This was not the case when she was 2 - 3 years old. Becoming passionate about the cause has also helped me feel more empowered while playing the Type 1 game. This year, I am looking forward to participating in...

1 - JDRF Telus Walk to Cure Type 1 Diabetes in Moncton on June 7th, 2009
http://jdrfca.donordrive.com/index.cfm?url=walk&bp=http://www.jdrf.ca/walk

2 - Accu-Check Cyclebetes National Relay for Juvenile Diabetes - August and September, 2009
http://www.cyclebetes.com/participate/participate.php?pageID=34

3 - Mike's Bike Shop Cyclebetes 200km Ride to Cure Type 1 Diabetes on September 12th, 2009
http://www.mbscycling.org/cyclobetes.php?eventName=Cyclebetes&cbIndex=main

I will never, ever stop doing all that I can do to help find a cure. And we've got a huge party planned for when that day comes... I can't wait.

Gettin' it

Some people just don't get it. Type 1 is more than a disease, it's a lifestyle. It's not just something you think about and do some of the time, it's integrated in every second of every day of our life. I sometimes find it difficult that some people just don't get it. It's not their fault, I also didn't get it before it was forced upon me and my family. This is the whole reason behind this blog really. I wanted a tool that I could use to educate people about Type 1. I wanted to put a personal face on what it's really like to manage Type 1 Diabetes.

I often feel more understood by discussing Type 1 with a complete stranger directly affected the disease rather than talking to some of my good friends or family members who have never played the Type 1 game. Like I said, it's not their fault, they've never been forced to learn how to play.

If you're one of these people who doesn't fully understand what we go through, here are some highlights...

Adele's blood sugars can be very good then either way up or way down in a matter of minutes. You just never know. I can never ever say with 100% certainty that her sugars will be good for an extended period of time even if she doesn't eat. I make the best judgement call that I can based on past trends and knowledge that I have gained, but there are no guarantees. In order to have very good control, you need to become you're own endocrinologist. You must make minor adjustments many times throughout the day and it's just not possible to consult with your diabetes doctor each and every time. This is very stressful and I apologize if I sometimes seem stressed or preoccupied.

During the last week of Type 1 gaming, Adele's sugars have been up and down. Today was a bit better. I still need to make a few adjustments though. She's suddenly very sensitive to insulin in the morning and resistant at bedtime. This was the opposite just a few weeks ago. She went low this morning in school (3.7 at 8:45). I really don't like this since we're not there to keep an eye on her. I need to back off her morning insulin scale. Last night her sugar climbed to 16.0 right before I went to bed. She was still 13.8 at 1 am when Michele got up to check her. We gave her 0.4 units of insulin but I was uneasy all night. I feared that it was too much. I should have checked again at 3 am but I was just too tired and couldn't find the courage to get up and do the extra check. After a rather uneasy sleep, Adele's sugar turned out to be 6.3 when I checked her in the morning, so that was good. Let's see what numbers tonight will bring...

So we're still gaming... Adele's sugars have gotten better in the last few days. Actually, I will rephrase that. The many changes that I made in Adele's insulin dosage scales since the weekend seem to finally be working pretty good. The mild flu that she was fighting at the end of last week (which seems to be what caused her blood sugar to shoot up suddenly) seem to have subsided. The general daily insulin sensitivity / resistance pattern has drastically changed though. Suddenly, she needs a lot less insulin in the late afternoon for some reason. Her sugars have been low before supper for the last 2 days.

Monday, March 23rd
2:45 pm = 4.8 (very good before her afternoon snack)
4:00 pm = 10.3 (a bit high)
5:15 pm = 3.3 (too low, why the sudden drop?)

Tuesday, March 24th
2:55 pm = 5.9 (again very good before her snack)
4:00 pm = 5.6 (I gave her a Fruit to Go since she was dropping – slowly I thought)
5:15 pm = 2.2 (way too low !!! )

So what caused this? The scale that I’ve been using the past 2 days is pretty much the same that I’d been using for at least the past 6 months and now overnight it’s way too much insulin. I can’t explain it. How do I fix it? Well, the scale I used today was 1 unit of insulin for 32 grams of carbs, so tomorrow my guesstimate is 1 unit for 42 grams of carbs? Will this work? We’ll have to wait and see. When playing the Type 1 game the object of the game is to try to predict how much insulin will be the right amount. Sometimes you get it right, other times you don’t…

JDRF Kids for a Cure

Adele and I met with our local MP Mr. Brian Murphy last week as part of "Kids for a Cure Awareness week". Our mission was to increase awareness of JDRF and Type 1 Diabetes as well as to ask Mr. Murphy to write a letter to key Ministers in Ottawa requesting funding for JDRF's Clinical Trial Network proposal. Mr. Murphy was very accomodating and listened to what we had to say and also agreed to send the funding request letter to Ottawa. He also spoke to Adele (in french which was great) and told her that she had alot of courage and that what we were doing was very good. The meeting was very successful in my opinion and hopefully will help us find a cure for Type 1 a bit faster...

Since we've been back from our Florida vacation, Adele's sugars had been quite good. Like I told the diabetes nurse, these good numbers were not due to a different game plan, it's just that Adele's body was cooperating.

Yesterday however this winning streak came to an abrupt halt. Adele's body no longer wanted to cooperate. Here are some game highlights:

Friday, March 20th

12:30 am = 19.3 (way too high, gave 0.65u of insulin)

2:35 am = 19.8 (way too high, gave another 0.85u of insulin)

6:50 am = 14.8 (still too high, inserted new infusion catheter, corrected before breakfast)

8:05 am = 7.3 (very good sugar :-) )

5:15 pm = 13.5 (still high, corrected before supper)

7:15 pm = 18.4 (way too high, here we go again I thought, gave 1.5u of insulin)

9:10 pm = 4.6 (good number, but too low before bed, small snack and turned off pump for 1 hour)

10:20 pm = 4.3 (still too low before bed, turned off pump for another hour)

11:00 pm = 4.8 (still too low, but with pump off for past 2 hours sugar should go back up, I hoped / thought and went to bed...)

Saturday, March 21st

1:05 am = 14.6 (going up too fast due to insulin debt caused by pumped turned off for 2 hours, gave 0.4u of insulin to compensate)

3:30 am = 16.6 (still going up, gave another 0.55u of insulin to try to bring sugar down)

7:15 am = 9.7 (not bad)

Hopefully things will stabilise soon. They usually do... And just when you think you've got it under control again, the Type 1 gods sucker punch you with a left hook. It's all part of the game...

Vacation gaming

One of the reasons why the Type 1 Game blog has not been updated in a while is that we were lucky enough to be vacationing in Orlando, Florida for 11 days during March break. This meant that we were busy planning before the vacation, then having fun in the sun while in Florida and since our arrival, re-adjusting back to real life, all while playing the Type 1 game.

Weeks before our departure on March 2nd, we were making a list and gathering Diabetes supplies including: a spare Animas pump (through their vacation loan program), 2 blood glucose test meters and 300 test strips, 2 lancet devices and 300 lancets (small needles used to prick fingers for blood), 20 blood ketone strips, 30 opsites, alcool swabs, 7 pump insulin cartridges, 10 pump infusion sets, 25 syringes, 2 bottles of Humalog insulin, Emla cream, Glucagon, Glucose tablets and crackers. My carry-on backpack was a mini pharmacy!

Because we were well prepared the vacation went well. Adele's sugars were pretty good given the lack of schedule, constant walking in the Disney parks, occasional skipped snacks and late meals. Adele's insulin pump gave us a bit of flexibility in our schedule even if it required constant planning and re-adjusting insulin doses. There were also a few stressful / not-so-fun diabetes moments during the vacation as well. Here are 2 that come to mind:

1 - During the 6 am flight from Moncton to Toronto, Adele's blood sugar dropped from 11.1 to 1.8 in about 1 hour! I had really misjudged the very early wake time / no appetite / very light breakfast combination. The usual higher basal rate combined with the bolus to cover food intake was way too much. Luckily we caught it before it was too late (1.8 is way too low though !!). Some much needed quick acting sugar brought her up to 5.6 about 15 minutes later.

2 - Waiting for our flight from Orlando to Toronto, Adele's pump alarm indicated an occlusion error. After 3 of these error alarms and a high sugar still rising, we knew we had to change her infusion set but were unsure if he had time before boarding the plane. Adele is terrified of the long needle that inserts the catheter and always asks for Emla cream to numb the skin before the needle is inserted. The problem was that we did not have the necessary 1 hour required for the Emla cream to fully freeze the skin. We ended up leaving the Emla cream on for about 45 minutes before changing her infusion site in a bathroom stall of the airport men's room just before boarding the plane. Not glamourous at all, but it fixed the problem. Occlusion alarms didn't re-occur and her sugars started to go down instead of up. Sometimes you just gotta do what you gotta do while playing the Type 1 game.

Thanks for reading...

Staying motivated

Photo by Don Ricker photography

Sunday morning I was tired. Seems pretty normal right. It happens to all of us every once in a while. Just rest and you'll bounce back, right?

The problem was that like every Sunday morning, I planned to get on my bike. On Sunday mornings, if I'm able to ride outside I do, but for the last 3 months it's been indoors on a stationary bike trainer. Why do I do it? Simply put, life usually just makes more sense when I'm on a bike. It may be the monotony of riding indoors, but lately I'm finding it more and more difficult to pedal on Sunday mornings. I'd much rather just lay on the couch for a while or even sleep in. Given the number of people who eventually fail at maintaining any type of regular exercise regimen, it seems like what I am going through is to be expected. As humans, we have a hard time getting and staying fit. Consistency is the key. It doesn't need to be a 3 hour workout every day, just 20 minutes 6 days a week is often enough yet many people have a very hard time of making this a habit.

Managing Type 1 Diabetes is not much different. It requires a little work consistently throughout every single day (365 days a year). We spend 1 to 2 hours performing physical tasks required to manage Adele's Diabetes. That's between 7 and 14 hours per week. We cannot cram all this work into 1 day and then take the rest of the week off. Staying motivated is key...

So, if we look at the number of people actually able to stick to an exercise routine (or a healthy diet for that matter), it isn't surprising that so many people living with Type 1 loose motivation at times causing them to have sub-optimal control and eventually run the risk of developing long term complications. Is it possible to stay focused at all times while playing a game that has no time outs and never ends?

So after all this thinking, I got off the couch, got on my bike and started pedaling...

When it's all that you know...

Adele was diagnosed with Type 1 Diabetes on October 31st, 2002 at the age of 2 1/2 years old. Unlike her parents, she doesn't remember not having Diabetes. Needles, finger pokes, sometimes not being able to eat, sometimes being forced to drink juice and/or eat is really all that she has known.

As soon as we stepped out of the hospital in November, 2002, as parents, Adele's Diabetes has been our disease. She's 8 now (will turn 9 this spring) and it's our duty to teach her how to manage it so that she will one day become independant. She can check her own blood sugar. She can give herself an insulin bolus using her pump. She knows that if her blood sugar is below 4.0 that she is low and needs to drink a juice. And she knows that if her sugar is above 8.0 (or even 9.0 I guess) that she is high and may need an insulin bolus to bring this down.

We can teach her the rest of the theory and even a few of the tricks that we use to maximize our chances of coming out ahead while playing the Type 1 game. But we'll also need to teach her about the long term complications of Type 1 Diabetes - like renal failure requiring dialysis, blindness, amputation, heart disease. Right now she has no idea of what it really, really means to have Type 1. Tonight while changing her infusion site (catheter inserted under the skin) she looked at me and told me that I was lucky to not have Diabetes and that she wished that she was like me and her mom. Ouch. What could I say? I've so often dreamed of being able to transfer the disease onto myself... but I can't.

So I explained to her that this is the reason why we participate in the Telus Walk to Cure Diabetes each year, organize and ride in the Mike's Bike Shop Cyclebetes 200 ride for JDRF and why we do everything that we do to promote and support JDRF and help researchers find a cure to end all of this. And then I gave her a great big hug...

Increased insulin sensitivity

Adele started swimming lessons this past weekend. Every Saturday and Sunday morning from 10 to 11 am.

On weekends, she tends to sleep in a bit later, usually until around 7:30 - 8:00 am. This basically means that the insulin bolus to cover her breakfast is peaking 2 hours later, which is during the swimming lessons. Saturday, Adele's sugar was only 4.6 just before her swimming lesson and the 1.6 units that she had received for her breakfast was peaking. How much did she need to eat to avoid going low during her swimming? I guessed 24 grams of carbs (2 Fruit to Go bars) and her pump disconnected. I was very uneasy during the entire swimming lesson watching her from the grandstands. Other parents were relaxing drinking their tea/coffee and chit chatting while I was anxious hoping that Adele's sugar was good. I almost went to check her sugar half way through the course. I hate disturbing her that way and Adele hates it also.

Why was I so nervous? The first reason was that this was her first swimming class. I did not have any data to base my decision on. Some physical activities bring down Adele's sugar more than others. I really didn't know how "hard" they were going to swim and how Adele's sugar was going to react. The second reason is that for the past few days Adele has become more sensitive to insulin for some reason. The cold/flu that she had last weekend is gone, so the extra insulin needed to keep things in check during the illness is no longer needed which means that insulin scales need to be backed off. I have been gradually doing this for the past 4 or 5 days now but still was not sure that it was enough.

Adele's sugar was 5.8 after her swim, so my guesstimate was good. We won this time. But I still need to back things off even more. As you can see in the pic below, 2.7 before her bedtime snack tonight is way too low!

We'll try to get it right tomorrow... You've got to learn to be flexible when playing the Type 1 game !!!

Very busy week

Adele and Chris Jarvis at the support group Curling event

The JDRF Research Symposium was really interesting. Awesome I should say! Canadian rower and olympic medallist Chris Jarvis was very inspiring. As a lifelong athlete who can only dream of competing at this level, I have tremendous respect for anyone with enough talent and dedication to not only reach the olympic level but also win a gold medal. And on top of that have to achieve this while playing the Type 1 game. To me that is simply amazing! Chris Jarvis is a true hero and role model.

I was quite nervous doing my presentation at the symposium. I presented Islet transplant recipient Jason Turner. Apparently I didn't seem as nervous as I felt for those who were listening. I am very happy and proud to be able to contribute in any way possible to help find a cure for Type 1 Diabetes. Attending the symposium has also made me very, very motivated for our Mike's Bike Shop Cyclebetes 200 bike ride to cure Type 1 Diabetes on September 12th this year. I can't wait. It will surely be even bigger and better than last year!

I also had the chance to discuss with Chris about Continuous Glucose Monitoring (CGM). The Minimed pump has an integrated CGM. A sensor inserted in the skin continuously mesures glucose levels and a transmitter sends this data at regular intervals to the pump. A graph displaying these glucose values over time (in a 3 hour window) appears on the pump screen. The insulin pumping functionality of the pump doesn't take the glucose level into consideration when delivering insulin though, but you can set alarms that indicate low and high levels. It's not a pancreas, but it gives real-time values that you can use to better predict highs and/or lows. It's still very new technology and still needs to be tweaked in my opinion, but still very promising.

Last weekend Adele came down with a cold which caused her blood sugars to shoot up dramatically. She climbed to 23.2 from 6.9 in a few hours after lunch on Saturday. I had to be much more aggressive with insulin to bring these higher numbers down. I guesstimated on how much more she needed and we checked every hour for the rest of the day to see if it was enough or too much. Adele's cold got better as the week went on and as expected I needed to be less aggressive with insulin to avoid subsequent lows. That's how the Type 1 game goes, as soon as you get all insulin scales right, it all changes again and you have to start over. Thanks for reading...

JDRF Research Symposium

Sorry for the lack of posts in the past week or so...

I am looking forward to attending the JDRF Research Symposium here in Moncton on Thursday, February 12th. I am presenting one of the invited guests - Jason Turner. Here is my presentation speech:

Good evening! My wife Michèle and I are very passionate about being involved in any way that we can to help find a cure for diabetes and we are very moved to be part of this event tonight.

Our daughter Adèle was very sick in the summer of 2002. She started losing weight in the spring. She also had no energy and never wanted to play like other kids her age. After many tests and doctor visits, she was diagnosed with Celiac disease. I was also diagnosed with Celiac disease as well one month later. Then, one month after this, in October on Halloween day, 2002, Adèle was diagnosed with Type 1 or Juvenile Diabetes at the age of 2 ½ years old. Our world had been turned upside down. From that point on, our life has been a constant battle trying to balance her food intake and insulin while trying to maintain as normal a life as possible.

Adèle gets her blood sugar checked between 10 and 15 times a day and sometimes as much as 20 times if she is sick with a cold or a flu. She gets her insulin via her insulin pump. We change her pump infusion site every 3 days or more often if her sugars are high. She also sometimes gets insulin injections via syringe if her sugars are high before we change her pump infusion site to ensure she gets the full insulin dose to lower a high blood sugar. Since Adèle is terrified of the long needle that needs to be inserted under her skin when changing her infusion site, we apply a topical anesthetic cream on the skin in order to make the site change less painful. My wife Michèle gets up AT LEAST once each night to check her sugar to make sure she doesn't go low. Adele almost never wakes up when she goes low. It is a rude awakening to find Adèle’s sugar in the 2’s or even in the 1’s in the middle of the night scrambling to wake her up so she can eat some much needed fast-acting sugar.

Adèle is currently in grade 3. She is an only child and talks about becoming either a doctor or a teacher when she grows up. To Adèle, a cure would mean no more needles, no more mood swings because of blood sugar fluctuations, being able to eat what and when she wants like her friends, being able to go to sleepovers and simply being a normal 8 year old kid.

To us as parents, a cure would be a dream come true! A cure would mean peace of mind that Adèle won’t have an insulin reaction when we’re not there to keep an eye on her and to be able to stop worrying about long term complications. A cure would mean a much needed relief from the constant emotional, physical and financial strain caused by Diabetes. Juvenile Diabetes is a very, very complex disease to manage for an educated adult, which is why we are terrified of giving her this HUGE responsibility in a few years.

Since the Type 1 diagnosis, we have gone through the usual mourning phases: shock, then disbelief, anger and asking “why us?”. After all this, the next logical step would be acceptance, but we choose not to accept the current available treatments as Adele’s life sentence. This is what drives us to do all that we can to help find something better for Adele and all others living with Type 1 Diabetes. It’s what motivates us to participate in the Walk for a Cure each year, to keep pedaling my bike in our annual Mike’s Bike Shop Cyclebetes 200 ride, to meet with our local MP as part of the JDRF Kids for a Cure awareness week, to continue to raise Type 1 awareness and support JDRF’s mission. A cure for Type 1 diabetes is out there just waiting to be discovered and JDRF is the vehicle that will enable this to happen before it’s too late for Adele and all others living with Type 1.

Moving on to our next guest speaker, it my pleasure to introduce Jason Turner. Jason was the 79th person in Canada to be accepted into the world famous Islet Transplant program at the University of Alberta Hospital. Driven by a passion for helping people with diabetes, Jason started Edmonton's first support group for people with diabetes in hopes of helping others avoid the complications he has had to face. He has become a much sought after speaker on the ravages of diabetes. Jason successfully completed a diploma in Library Technology and Information Management from Grant MacEwan, and is a skilled researcher, able to find answers to most any question. His main passion continues to be helping people with diabetes, a challenge that he gladly faces and considers every day. Please join me in welcoming Jason Turner.