THE RIDE

Saturday morning, August 22nd, Michele, Adele and I as well as our friends Rachel and Nadia packed our gear in our truck and headed out to Halifax. That afternoon was spent shopping as per the girls request and in the pool at the hotel. The Accu-Check Cyclebetes national relay Maritimes team had a meeting at 5 pm followed by supper. Because of the forcasted hurricane (Bill), we would make a decision at 5:30 am the next morning to see if it was safe to begin the ride to Moncton or if we needed to postpone.

Day 1 on Sunday, August 23rd, after about 3 hours sleep (much noise from a wedding at the hotel kept me up most of the night), we woke up to cloudy skies but no rain. We ate and made our way to Point Pleasant park for the departure of our journey. Alex Bates and I were the first ones to ride the tandem. After 2 flat tires, we managed to cover about 50 kms before handing over the tandem to Andrew and Jonathan. The heavy rain and gale force winds started just about then and followed us all the way through Wentworth. It was a very long and difficult day given the conditions. 14 hours after we left from Halifax, we arrived in Moncton at around 9 pm. I was exhausted.

Day 2 on Monday, August 24th began with a breakfast and gathering at Mike's Bike Shop in Dieppe. We left Dieppe in the light rain at about 9:30 am accompanied by 3 local riders who would help us get to Fredericton. After many kilometers and flat tires, the sun finally came out after Jemseg just in time for my shift riding the tandem. Chris Jarvis went ahead and pushed the pace to around 37 - 40 km/h. After about an hour of this, my right knee was telling me it had enough of the uncomfortable position on the tandem and I went back to riding my own bike. We made it to the campground at around 6:30 - 7 pm. It was another long day. That evening, we had a team meeting and decided that we would leave early the next day (6 am) and that riding shifts on the tandem would be 1 hour instead of 2 or more like past days.

Day 3 on Tuesday, August 25th began with a very early wake up call at 5:15 am. I was very tired and quite happy to not have the first shift on the tandem. Megan and I were the last pair to get on the tandem just before Perth Andover and even hit the fastest speed of the day on one of the downhills (65 km/h). After getting off the tandem, I got on my own bike and rode the rest of the way to Edmundston. The sun was shinning and the views on the back roads travelled were breathtaking. We arrived at the campground earlier this time, around 4:30 pm. We stayed up a bit later around the campfire and met the Quebec team including 8 year old Liam who has been practicing riding a tandem with his mom all summer in preparation for this ride.

Day 4 on Wednesday, August 26th also began quite early (around 5:30 am). We rode our bikes to the Quebec - New Brunswick border for the official Accu-Check blood glucose meter baton handoff. I was both sad and happy to drive home after that.

The trip summary for me was about 18 hours on my bike (or the tandem) riding about 500 kms out of 800 kms in 3 days. I was sore and tired, but very inspired. Being surrounded by so many "do something" people was very good for my morale and gave me hope for Adele's future. Every single pedal stroke in the ride was bringing us closer to a Type 1 cure. Chris Jarvis rode about 10 hours on Sunday through the hurricane for a total distance of 220 kms. He woke up with a high blood sugar that morning which stayed high almost until noon. You could see that he was suffering and not 100% on the bike. He later told me that his sugar was up to 19 at that point. It came down in time for lunch, but then went low in the afternoon. His pump started beeping while he was riding the tandem with Barb. I rode up beside him after he asked me to check what the problem was because he didn't want to stop. His continuous glucose monitor indicated that he was low (3.9). We wanted to get someone else on the tandem so that he could rest and eat, but he insisted on continuing after juice and a snack. Kidney and pancreas recipient Alex Bates also did his share of riding on the tandem not even 1 year after his transplant. His 24 years of Type 1 game struggles have given him a maturity way beyond his years. I was very inspired by him being out there on the bike during a hurricane with a smile on his face. This was nothing compared to everything else that he'd been through. The Type 1 players were riding through high and low blood sugars. Their Type 1 destiny has taught them the true meaning of courage. Not once did I hear any of them complain.

I came home very inspired and happy to see my family. You can follow the relay here http://www.cyclebetes.com/follow/follow.php?pageID=150

Next up is our local Mike's Bike Shop Cyclebetes 200 km ride on Saturday, September 12th. I can't wait... http://www.mbscycling.org/cyclobetes.php?eventName=Cyclebetes2009&cbIndex=main

The biggest bike relay in the world !!

We're still surviving in this game called Type 1. I'm still not sure how the heat affects Adele's blood sugars. It seems to cause her sugars to go high. We've been telling her to drink plenty of water to avoid dehydration. How does the heat affect blood sugars for other Type 1 gamers out there?

Tuesday started out good, but then Adele's sugars started to creep up late afternoon into the evening and night. Here are the highlights:

Tuesday, August 18th

7:30 am - > 5.0

8:45 am -> 5.5

11:15 am -> 5.9

2:30 pm -> 12.8 (too high, gave 0.3 units insulin)

3:30 pm -> 12.0 (still too high before afternoon snack)

5:20 pm -> 15.5 (way too high before supper)

8:45 pm -> 17.5 (still way too high)

9:25 pm -> 18.1 (still going up, corrected with 0.5 units insulin)

11:00 pm -> 13.2 (still high, gave another 0.6 units insulin)

Thinking that this upward trend was going to continue, I decided to give Adele a bit more insulin to cover her supper the next day. This caused her to go low (3.3) before her bedtime. I guess my gameplan wasn't so good :-(

The biggest bike relay in the world is set to begin on Sunday, August 23rd in Halifax. The Accu-Check Cyclebetes relay to Cure Type 1 Diabetes will have teams of cyclists biking from Halifax to Vancouver over a 3 week period. On Saturday morning, we're leaving for Halifax (by car). I will be riding as part of the Maritimes team. Our journey will be from Halifax to the Quebec border.

August 23rd - from Halifax to Moncton (300 kms - hopefully hurricane Bill won't blow us off the road!!!)

August 24th - from Moncton to Fredericton (200 kms - we'll be at Mike's Bike Shop in Dieppe from 8am to 9am, come meet the team including Type 1 Canadian Olympic rower Chris Jarvis and bring your bike for our short ride before our departure)

August 25th - from Fredericton to Edmundston (310 kms)

August 26th - handoff to the Quebec team before driving back home

I will try to post pics and details daily on this blog. Can't wait to get started !!!

http://my.e2rm.com/personalPage.aspx?registrationID=580227&LangPref=en-CA

Moody

I was just thinking how Adele's blood sugars affect my mood. A good day playing the Type 1 game makes for a good day for me in general. I'm just in a better mood. Little things like slow traffic, spilled milk, a flat tire on a bike ride will never ruin a good day playing the Type 1 game for me. And the best is when we're on a winning streak. It feels like playing on an undefeated hockey team during the playoffs. You're on a high and can even get a bit cocky. "The Type 1 game isn't so bad after all" is what I sometimes tell myself. I'll even sometimes think that this time we've got it beaten, that the basal insulin rates and carb ratio scales that we're using will keep working like this from now on. Then, suddenly, without warning, the winning streak abruptly comes to an end. This is inevitable. It always happens eventually. This is what ruins my day and puts me in a bad mood. It reminds me of what it's really like to play the Type 1 game. It's Diabetes way of communicating to us that it's still there and that we can never ever forget about it. But, we still often get caught off guard.

Last week we spent 3 days vacationing in PEI. It was a real fun vacation with real nice weather. We had inserted a new Continuous Glucose Monitor sensor before leaving. I find that the first 3 - 4 days are when the sensor works best. After that it sometimes gets messed up and starts giving false readings. The CGM is a pain to insert and calibrate, but a real Type 1 luxury especially when your activities are out of the ordinary like vacationing in PEI. The first day, Adele suddenly became very sensitive to insulin. Her pump kept giving us low blood sugar alarms. We have the low alarm set to 4.5 mmol/L to give us a warning before she is low (below 4.0), but there is always a delay in the sensor reading, so even if the sensor says 4.5, she may be lower than that. Adele needed many extra snacks on the first day to avoid these lows. We also had 3 or 4 low blood sugar alarms during the first night. At least we're on vacation right? I backed off her insulin for day 2, but we still needed extra snacks to avoid lows. I backed off her insulin even more for day 3 and she had alot less lows. But we only stayed for 3 days, so guess what happened when we got home after the vacation? It took another 2 days to slowly bring her insulin intake back up again because at home she was now tending to run high. Fun game...

This week, with the daycare routine, I made a few small changes and her sugars have been quite good which means that I'm in a good mood.

Another thing that keeps me in a good mood is my upcoming participation in the Accu-Check Cyclebetes National bike relay to Cure Diabetes. It is the biggest bike relay in the world. I am riding the New Brunswick and Nova Scotia legs (from Halifax to Edmunston in 3 days).

Sunday, Aug 23rd - Halifax to Moncton (approx. 300 kms)

Monday, Aug 24th - Moncton to Fredericton (approx. 180 kms)

Tuesday, Aug 25th - Fredericton to Edmundston (approx. 300 kms)

It's a relay so the total distance is shared amongst the team of 10 riders. They also have a tandem bike that we're supposed to ride. I'm also bringing my own bike and would like to ride as much as possible even if it's not my "turn". Canadian Type 1 Olympic rower Chris Jarvis will be riding with us also. We will be at Mike's Bike Shop on Monday, Aug 24th from 8am to 9am. You can drop in to meet Chris. Bring your bike, Chris and the rest of the team will be going for a short bike ride with all guests (including the kids) before we leave at 9am. I will try to post regular updates during the ride (daily). If I don't have access to an internet connection, I will post some pics and comments upon my return. The Cyclebetes website is http://www.cyclebetes.com/.

Now, let's see how long this Type 1 game winning streak (and good mood) will last...

Autoimmunity

Unlike Type 2 Diabetes, Type 1 is an autoimmune disease. Type 1 occurs when a person's immune system mistakenly destroys it's own insulin producing cells in the pancreas. The immune system flags these good cells as bad and kills them off like it would with a flu virus for example. So far, this cannot be prevented or reversed.

Type 1 Diabetes is therefore caused by a faulty immune system. The immune system is not weak, it's just not very good at distinguishing good cells from bad ones. Individuals with one autoimmune disease have a greater risk of developing others. Autoimmune diseases have a genetic factor. Children of parents (both or just one) with an autoimmune disorder have a greater chance of developing one as well.

Before 2002, I didn't really know what autoimmunity was, but I was about to find out. Adele started to get sick in the summer of that year. After many doctor's visits, a specialist in Halifax told us that she had Celiac disease. Celiac disease is an autoimmune disorder in which the ingestion of a protein called Gluten causes an autoimmune reaction that causes damage to the lining of the intestine. There is no cure and it cannot be reversed. Treatment is a Gluten-free diet for life. Gluten is a protein present in wheat and it's derivitives (rye, oats and barley...). We had never heard of such a condition and didn't know what Adele could and could not eat when we first started on the diet. The specialist strongly recommended that Michele and I get tested as well (even if we didn't have any typical obvious symptoms). One month after Adele's diagnosis, I also was also diagnosed with Celiac disease. Reading up on the disease and other autoimmune disorders, I easily recognized the symptoms of Adele's developing Type 1 Diabetes one month later. Three blows in three months - ouch ! Two years later, Adele was diagnosed with a 3rd autoimmune disease called hypothyroidism. There is also no cure for this condition. The treatment is synthetic hormone therapy (taking a synthroid pill every day) for life.

Close to 7 years after being diagnosed with Celiac Disease and being on a strict Gluten-free diet, I can truly say that Adele saved my life. The atypical Celiac symptoms that I had have all gone away and my new definition of what being healthy feels like is amazing. It's incredible how avoiding the poison that I was putting in my body has changed my life. Part of this extra energy and clarity gained is spent on JDRF awareness and fundraising. Type 1 Diabetes is the hardest of Adele's autoimmune diseases to live with. It's the least that I can do for Adele in return for what she has brought to my life. So now you know part of what truly motivates me keep fighting for the cure and to finally be able to win the Type 1 game...

Also, I forgot to thank those who leave comments. I appreciate the feedback. Christiane, good to hear that your daughter has started pumping. If you have any questions, send me an email (velo_mike@hotmail.com). I am not a doctor, but I find that I gain more from discussing with Type 1 gamers vs. book smart non-gamers.

Back to normal... but what is normal?

Adele is now completely recovered from her battle with the H1N1 virus. My wife Michele is still coughing and a bit tired, but back to work. I somehow managed to avoid getting sick. We're hoping that we built up antibodies for the predicted 2nd wave of the Swine flu this fall.

I'm having a few problems with my attitude in regards to the Type 1 game as of late. I'm not sure if it's fatigue from all the work my immune system must be doing to keep me from getting sick or just a normal part of playing a game with no breaks whatsoever, but I'm bitter towards the big D (Type 1 Diabetes). I resent that we're on vacation from work next week, but not from playing the Type 1 game. I resent that some people in our lives just don't get Type 1 and make no effort whatsoever to learn. I resent that Adele can't just go to summer day camp like the other kids her age without us meeting with her caregivers explaining the basics of the Type 1 game then being in contact with them many times throughout the day to try to make Adele's experience as normal as possible. I resent that days at the beach are filled with hourly blood sugar tests, connecting / disconnecting Adele's pump (it can't be worn in the water) and roller coaster sugars because she's getting her insulin in boluses only and no basal when pump is disconnected. I resent that the thought process in my mind that is trying to predict how much insulin she needs at every second of the day and night just can't be turned off. Even after almost 7 years, the Type 1 game still gets to me...

And now, to finish the post on a more positive note, Adele's sugars were very, very good today, they floated between 5.0 and 9.4. Her basal rates are still different than what they were before the H1N1 flu. A few changes throughout the week to her meal carbohydrate - insulin ratios seem to be working good. Her body is cooperating. But with work vacation next week comes a change in the daily routine. I have a feeling I'll be making insulin adjustments again very soon...

This time around it has a name

In the last post, I shared our struggles with Adele's flu last week. She is better now, but it was a long and exhausting week. During our 2nd doctor visit after 5 days of fever, they did all kinds of tests including a test for the Swine flu virus (H1N1). A few days later, the doc gave us a call confirming that the H1N1 virus was the culprit. Every year, Adele's daily Diabetes management is thrown into a whirlwind because of the various viruses that she comes in contact with. This time it was different. This time it had a name: H1N1. This unwelcome guest has since also paid a visit to my wife Michele. At least her sugars have remained stable (she doesn't have Type 1 Diabetes). I'm still healthy so far.

So now Adele and Michele have become H1N1 statistics. They're forever in the record books. I told Adele she was in the paper this weekend. An article stated that 3 new cases of the Swine flu had been confirmed in Moncton and she was one of these people. She still wasn't too impressed.

We needed to completely change our Type 1 gameplan to try and stay on top of the H1N1 virus. After about 2 days of out-of-control blood sugars, Adele's total daily insulin amount was close to 50% more than before the flu. This was necessary in order to keep things in check. It worked for about 5 days after which she started to go low. I knew this would surely happen as soon as her body began winning the battle with the virus. I knew it was going to happen, but I didn't know when. This is a very dangerous time for insulin reactions to occur (very low blood sugars and unconsciousness). We avoided this by keeping a very close eye on Adele's sugars which meant 10 to 15 blood glucose checks a day and 2 or 3 during the night. Last week was also a CGM (Continuous Glucose Monitoring) vacation. This was not by choice but rather because Adele was just too sick and she didn't want to go through the sensor insertion. This was not a bad thing since the sensor she had on when she started to get sick was giving errors because the sugar started shooting up very fast. The sensor seems to have a hard time with rapid glucose fluctuations.

Here are Adele's basal insulin rates that were programmed into her pump before the H1N1 visit:

12 am to 5 am -> 0.25 units of insulin / hour

5 am to 9 am -> 0.5 units of insulin / hour

9 am to 8 pm -> 0.25 units of insulin / hour

8 pm to 12 am -> 0.5 units of insulin / hour

While she was sick (days 3 through 7), her basal insulin rates were:
12 am to 5 am -> 0.4units of insulin / hour
5 am to 9 am -> 0.75 units of insulin / hour
9 am to 8 pm -> 0.4 units of insulin / hour
8 pm to 12 am -> 0.75 units of insulin / hour

Currently, her basal insulin rates are:
12 am to 5 am -> 0.3 units of insulin / hour
5 am to 9 am -> 0.6 units of insulin / hour
9 am to 8 pm -> 0.3 units of insulin / hour
8 pm to 12 am -> 0.6 units of insulin / hour

How did I come up with these? All insulin dosage is determined by trial and error and by looking at how the body reacts to food and insulin. In the beginning it is done with the help of your diabetes healthcare team, but after you get the hang of it, you begin to make changes independantly. Independance is the goal. I currently make all changes myself. For example, if she's waking up low, I'll usually either start the higher basal rate later in the morning (like at 6 am instead of 5 for example) or I could also lower the basal rate itself (from 0.6 units of insulin / hour to 0.5 for example). There is no magic formula that gives you this information. There is no doctor that can tell you the exact number that will work for sure. It's a matter of studying blood glucose variations in relation to the amount of insulin delivered and make changes that you THINK will work and then see if you were correct. I'm not sure how it is for an adult with a routine daily schedule, but for a growing, outgoing 9 year old, these changes are pretty much constant. That is what the Type 1 game is all about...

Flu season already ?

Canada Day face painting.

I'm not sure if it's because summer simply decided to not come to our part of the world this year, but it seems like we've fast-forwarded directly into flu season. Playing the Type 1 game is always alot of work, most pleasant when the body cooperates and very difficult when it doesn't. Without warning Adele woke up with the flu and a fever on Saturday morning. Since it started very quickly, my thinking was that it would also end very quickly. It must be something she picked up at daycare. After all, that's what kids do right... they carry and transmit viruses all the while building up their immune system. Being successful while playing the Type 1 game depends on consistency and predictibility. For a Type 1 gamer a simple flu is often the equivalent of someone shoving a crowbar into your bicycle spokes when you're flying down a hill... It ain't good.

Adele's sugars didn't seem to be affected a lot when the symptoms started. Her sugars had a tendancy to go up (they usually do when a Type 1 diabetic gets sick), but I was still managing to keep them in check with the occasional correction. Sunday afternoon this all changed. All of the scales that I had been using to calculate insulin doses were no longer enough. It was the equivalent of putting in countless hours on a project and losing ALL your work in a matter of minutes. I had absolutely no idea how much insulin she now needed to avoid these highs. Her appetite was not good. She had diarrhea and naussea. Because of the high sugars, she also had ketones in her bloodstream. If this is not dealt with it can progress to a serious complication called diabetic ketoacidosis (DKA) which can lead to coma or death if not treated. Obviously we'd be heading to the hospital well before then, but I just mentioned that to show the seriousness of DKA.

Here are some highlights from the past few days...

Saturday, July 4th

9:45 pm -> 8.7
10:23 pm -> 17.4 (way too high and climbing way too fast, gave 1.3 units insulin)
11:30 pm -> 14.0 (still too high, but at least going down, gave another 0.1 units insulin)

Sunday, July 5th

4:55 am -> 21.3 (alarm clock did not wake us at 1 am as planned, I woke up by myself and had a feeling she was high, I was correct, ketones -> 1.3, unlike sugar ketones should be zero, gave 1.0 units insulin)
6:00 am -> 20.2 (still way too high, gave another 0.5 units insulin)
8:00 am -> 10.5 (better, but still too high before breakfast)
10:00 am -> 10.6 (still highish)
11:34 am -> 9.8 (still highish before lunch)
2:25 pm -> 15.5 (way too high before snack, gave 1.4 units insulin to cover snack and hopefully correct this high)
3:30 pm -> 22.8 (way too high, the scales are no longer working, gave 1.7 units insulin)
4:50 pm -> 14.5 (going down, but still too high, gave another 0.5 units insulin)
5:45 pm -> 12.4 (still too high before supper)
7:10 pm -> 17.3 (way too high, gave another 1.0 units insulin)
9:40 pm -> 13.8 (still too high, gave 1.0 units insulin)
11:00 pm -> 20.3 (still way too high, ketones -> 0.8, gave another 1.8 units insulin)

Monday, July 6th

12:15 am -> 14.7 (at least it's going down now)
1:30 am -> 7.8 (going down too fast?, turned pump off for 1 hour to try to avoid low)
2:00 am -> 7.4 (low avoided)
3:05 am -> 5.8 (gave her 3 gummies to avoid low)
5:00 am -> 10.9
6:55 am -> 19.1 (way too high, here we go again, gave 1.2 units insulin, Adele was nauseous, no breakfast)
8:05 am -> 13.1 (still high, gave another 0.6 units insulin)
9:05 am -> 8.3 (finally a good number)
10:15 am -> 12.5 (going up again, gave 0.3 units insulin)
11:25 am -> 11.2
1:30 pm -> 16.8 (too high, insulin scales are still not enough, gave 1.3 units insulin)
2:45 pm -> 9.3 (going down)
4:00 pm -> 5.2 (turned pump off for half an hour to avoid low)
5:00 pm -> 6.1 (low avoided, good number before supper)
7:10 pm -> 15.0 (too high again, corrected with 0.9 units of insulin)

The purpose of this post (and entire blog) is not to get anyone's pity, it's simply to explain what we go through dealing with a seamingly simple flu virus. Keep this in mind the next time you encounter someone else playing the Type 1 game who seems tired. It's an earned fatigue.

Why so many blood glucose tests last night?
1 - I was giving insulin boluses blindly. What I mean by this is that I had absolutely no idea how much insulin Adele's body needed and how it was going to react. A few days ago, all this insulin would have surely put her in a diabetic coma or killed her and I couldn't help but be nervous giving her so much insulin and then trying to sleep. Testing often is necessary during times like these.
2 - I really, really wanted to try to avoid DKA which means a hospital stay.

As I'm writing this she seems to be getting better. She's eating a bit and her sugars are floating around 8 - 9 right now with the additional insulin that I've been giving.
Thanks for reading...

Adele's toe part deux

Happy Canada Day !

We're looking forward to the day off work tomorrow to be able to celebrate living in the best country in the world. There's no vacation from the Type 1 game though. 24/7, 365 days a year. It's a crazy game that we're expected to play with no breaks whatsoever. What other choice do we have?

Adele is still on the Continuous Glucose Monitor (CGM). Sensors have been lasting 5 to 6 days lately. Monday nights have been sensor insertion night for the past few weeks. We need a full night in order to freeze the skin, insert the sensor and calibrate. Hopefully it will get better, but right now it's basically a full night.

Last night we inserted a new sensor (and an infusion site insertion and a new insulin reservoir in her pump). The last one had lasted until Sunday afternoon so we had been doing finger pokes since then. The insertion itself was the best so far. Adele was all excited saying that it didn't hurt her at all. I had cut a small dressing to keep things in place while still allowing breathing room for her skin. Adele finds that it itches a whole lot after a few days (not so good when we're trying to keep it on for 6). After that was when the problems started. The pump kept giving us BAD SENSOR errors. After about 2 hours of restarting the sensor and still getting errors, Adele started to cry. She loves the sensor, but was afraid that we had gone through the whole insertion for nothing. I ended up calling the Medtronic helpdesk. The Medtronic support lady stepped me through what I needed to do and we finally got the sensor to start reading glucose levels. Adele went to bed at that point as it was 9 pm. I calibrated around 11 pm and went to bed. The pump alarm woke me up at midnight with a Calibration error alarm. We got up at 2 pm and did a finger poke since the CGM was still not working. This morning I tried again and got it to work. It started reading just before we left the house. I'm glad we didn't remove the sensor and kept trying. Adele was very, very happy when she glanced down at her pump and saw her sugar. I was very happy as well. The pump asked for a calibration in the early afternoon (as expected) and I managed to step Adele's caregiver at daycare through the calibration process.

Now back to Adele's toe (ingrown toenail). It was better following the oral antibiotics, but seemed to have gotten worse a few days after finishing the antibiotics. Adele complains that it hurts and her sugars had crept up as well. Here are the game highlights for the past 2 days...

Monday, June 29th

1:50 am -> 18.4 (way too high, gave 0.6 units insulin)
7:15 am -> 9.8 (a bit too high before breakfast)
8:45 am -> 11.6 (too high before am snack, ate and bolused with 0.8 units insulin)
10:15 am -> 4.2 (dropping very fast, gave 17g carbs to avoid low)
11:15 am -> 4.6 (low avoided before lunch)
2:00 pm -> 7.9
3:10 pm -> 10.0 (a bit high before pm snack)
4:10 pm -> 21.1 (way too high, not sure why it shot up like that, gave 0.9 units insulin)
5:00 pm -> 21.o (still way too high, corrected aggressively before supper, 2.6 units insulin)
7:00 pm -> 7.9 (finally coming down, but will it come down too much?, ate evening snack, bolused with 0.8 units insulin)
8:35 pm -> 18.0 (apparently it won't come down too much, gave 0.7 units insulin)
9:30 pm -> 20.0 (still not coming down, gave another 0.7 units insulin)
11:00 pm -> 9.8 (now it's coming down, but I hope that it won't drop too much, shut off pump for 1 hour)

Tuesday, June 30th

2:00 am -> 8.9 (good for night, didn't do anything. Thanks Type 1 gods, we can sleep!)
7:15 am -> 10.2 (too high before breakfast, ate and bolused with 1.9 units insulin)
8:45 am -> 14.3 (too high before am snack, ate and gave 0.6 units insulin)
10:15 am -> 12.8 (still too high, gave 0.2 units insulin)
11:15 am -> 10.3 (too high before lunch, ate 2.1 units insulin)
1:00 pm -> 10.2
3:15 pm -> 7.4 (very good before pm snack)
5:00 pm -> 9.1 (a bit high before supper, ate and bolused with 2.4 units insulin)

The high sugars on Monday night may have been the cause for the difficulties encountered setting up the CGM sensor. Today's sugars are better than yesterday. Maybe her toe is getting better? We'll see...

JDRF Annual General Meeting

Picture of my feet standing on the glass floor of the CN tower. It still freaks me out just looking at the picture...

This past weekend, I attended the JDRF AGM in Toronto. It was amazing! 100 to 150 people dedicated to find a cure for Type 1 Diabetes together made for a very strong and positive vibe. I found it very inspiring to be amongst such a group of amazing people who have stepped up to the plate to help accelerate the cure for Type 1 Diabetes instead of feeling sorry for themselves. Interacting with others who truly "get" what it is to live with Type 1 was very good for the morale and provided me with lots of hope for Adele's future. And it has motivated me to continue to fundraise. This Type 1 thing is not going to go away by itself, it's up to each and every one of us to help make it happen...

It was very exciting to hear about the artificial pancreas project at one of the AGM presentations. This is a closed loop system in which an algorythm automatically makes insulin delivery adjustments based on continuous glucose monitoring readings. If the algorythm predicts that blood glucose is rising or will rise, then it reacts by delivering more insulin. If the algorythm predicts that blood glucose is dropping or will drop, then it reacts by delivering less insulin (or even none at all). This is still a few years away, but very exciting nonetheless. We also heard about glucose-responsive insulin which is only active in presence of glucose, a drug that seems to halt the destruction of insulin producing islets in early onset Type 1 Diabetes, a drug that seems to protect the eyes from the devastating effect of long-term diabetes as well as trying to find way to stimulate the body to regerate new insulin-producting islets. These are all very exciting research projects that show that funds raised for JDRF really are leading to discoveries that help all playing the Type 1 game achieve better control.

As far as our day-to-day gaming, Adele's toe is better. The infection is gone. But even as her toe was healing, her sugars kept creeping up. Technically this should have been the opposite. On Thursday we found out what was causing this rise. She woke up with a cold (sore throat, fever and cough). Yep, that'll wreak havoc on sugars ! Even if Adele's cold symptoms have gotten better, her sugars still seem to want to creep up. I've managed to somewhat keep things under control by modifying insulin scales throughout the day which translates into more insulin. Today was a good day. Here are the details...

1:00 am -> 13.2 (too high, gave 0.6 units insulin to bring down)

7:10 am -> 3.8 (too low, I guess the 0.6 units of insulin last night may have been too much, also decreased morning insulin basal rate from 0.55 units per hour to 0.5 units)

7:55 am -> 6.7 with one arrow up (gave 0.3 units to avoid future high)

8:45 am -> 5.8 (very good before am snack, she ate 14 grams carbs, gave 0.1 units insulin)

10:15 am -> 7.0 with one arrow up (0.1 units after snack was not enough, gave 0.4 units insulin to avoid subsequent high)

11:15 am -> 7.2 (very good before lunch, she ate 51.1 grams of carbs, bolused 1.9 units insulin)

1:15 pm -> 8.4 (did nothing)

2:15 pm -> 7.9 (gave 9 grams of carbs, still 1 hour before afternoon snack)

3:15 pm -> 6.9 with one arrow up (i guess the 9 grams one hour ago wasn't necessary, ate afternoon snack, bolused with 1.1 units insulin)

5:00 pm -> 4.1 (pump gave low alarm since sugar was below 4.5, gave her a Dex4 at daycare to avoid low before arriving home, supper and 2.6 units insulin)

7:00 pm -> 6.3 (very good before bedtime snack, ate 62.4 grams carbs, gave 2.2 units insulin)

9:00 pm -> 7.9 (looking at graph her sugar was dropping and snack bolus was about to peak, shut off her pump for 1 hour to avoid low)

10:00 pm -> 7.7 (low avoided)

10:30 pm -> 8.3 (rising slowly, hopefully not too much, 9.0 is our target at bedtime)

All these numbers are from the Continuous Glucose Monitor (CGM). After 2 days of finger pricks, we inserted a new sensor last night. The CGM indicates rapid blood glucose fluctuations by either one or two arrows either up or down. These helped me today to keep things in check. We'll see if Adele's body keeps cooperating. I predict that I will need to back things off later this week as she really gets rid of her cold... We'll see.

The power of a toe

First and foremost, I would like to personally thank everyone who organized, participated and fundraised in last weekend's Telus Walk to Cure Type 1 Diabetes. It really, really means alot to me and my family. The final number for the Moncton Walk was a total over $220,000 ! Again THANK YOU !

Next up, the Mike's Bike Shop Cyclebetes 200km bike ride to Cure Type 1 Diabetes on September 12th, 2009. I can't wait !

As far as Type 1 gaming, we're currently on day 3 of Adele's 5th Continuous Glucose Monitoring (CGM) sensor. The insertion is getting better and better. Adele didn't even cry this time! She is one brave little girl. No errors so far either. I wouldn't really say we're on a winning streak at the moment, but we're starting to get better and better at the CGMing aspect. Adele really appreciates the freedom from the finger pricks that it gives her when the system is well calibrated and working like it should and we really enjoy the low glucose alarms. It's too bad that more Type 1 gamers can't afford the CGM tools...

As of last weekend, Adele's blood sugars have started to creep up. She wasn't sick, less active, eating more or less at different times of the day. What was causing this sudden rise? Sometimes it can't be explained. As I have mentioned before, the body is a very complex system. Any little thing that would go unnoticed by a non-diabetic will show itself as blood glucose fluctuations in someone playing the Type 1 game. For Adele, this little thing turned out to be an ingrown toenail that started to become infected. It wasn't enough to stop her from doing all of her everyday activities, but it sure wreaked havoc on her sugars. Here are some highlights from Monday...

Monday, June 8th, 2009

12:45 am -> 16.2 (too high, gave 0.6 units insulin)
5:05 am -> 19.9 (way too high, gave another 0.9 units insulin)
7:10 am -> 12.1 (too high before breakfast, corrected before her breakfast)
8:30 am -> 13.1 (still high before gym class at school)
9:30 am -> 10.5 (still high after gym class, I guess she didn't run enough, corrected before snack)
10:50 am -> 10.1 (not going down enough, gave another 0.3 units insulin)
11:50 am -> 11.9 (still high, corrected again before lunch)
1:30 pm -> 12.7 (still high, gave 0.1 units insulin)
2:45 pm -> 13.6 (going up again, gave 0.4 units insulin before she got on the bus)
3:50 pm -> 14.8 (seems like it just won't come down)
5:30 pm -> 17.7 (way too high, corrected before supper)
7:40 pm -> 20.8 (even higher now, corrected really aggressively and changed her infusion site - catheter under the skin that delivers insulin just in case the old one wasn't working)
8:40 pm -> 20.4 (not going down, gave 0.4 units insulin before she went to bed)
9:30 pm -> 17.0 (at least it's going down now)
10:50 pm -> 14.9 (still too high, gave another 0.3 units insulin)


A full day of high sugars due to a toenail!! Things seem to have settled down a bit now since I have made many changes in her insulin scales. Insulin amounts that would surely have given her a serious insulin reaction a few days ago are just enough from keeping her from going high now. I need to be careful though because this is going to switch back at one point and I'll surely need to back things off as her toe gets better. When will this be? I have no idea, but I do know that it will eventually happen. We'll see what the Type 1 game has in store in the upcoming days...

Keep on trying...

As I started to write this post, we were starting day 5 on our 4th CGM sensor. We were going to try to keep this one going for 6 days. I have spoken to a few people and they have been successfully keeping their sensors on for 6 days without problems. The 3rd sensor only lasted 4 days. Last Saturday, after swimming, I reconnected Adele's pump (she can't wear it in the water). Once the pump started reading the sensor glucose values it began to beep. The alarm indicated that Adele was low. It said her sugar was 2.9. I asked Adele if she felt low, she said no, but then maybe. I checked with a finger poke / meter and she was 17.4 !! Major difference. The blood glucose level (finger poke) is always more precise than the value in the interstitial fluid (CGM sensor), so the 17.4 was the right answer (but not a good blood glucose value - way too high). I'm glad that I didn't treat the 2.9 with more sugar, it would have made matters much worse. I tried recalibrating after this for about 3 hours and kept getting BAD SENSOR errors, so we decided to remove the sensor and go back to the old school method of finger pricks. I was away Saturday night until Sunday around 8pm, so we didn't have time to insert a new sensor before the beginning of the week.

On Monday night, both me and Michele were home, so it was time for a new sensor. Adele was very anxious of the insersion needle, but understood that it was worth it since she wouldn't need to be finger poked the next day during her school field trip as well as the rest of the week. After another very tense moment just before the needle insertion, Adele said it wasn't so bad this time around. She said it only hurt a bit after it was inserted, then it was OK. We were quite happy with this progress. The pump began reading the sensor signal and I thought we were in business, but after about an hour, the pump could no longer read the sensor signal. We were getting alarm errors. I tried restarting the sensor, but it didn't work. This was just before Adele's bedtime and she was getting tired. She began to cry thinking that we had done the whole insertion for nothing. My last resort was removing the dressing that was covering the sensor. This is tricky business, since you only must remove the dressing (clear, transparent, very thin sticker that keeps the sensor in place) and not the sensor itself. After removing part of the dressing, I gently pushed the transmitter towards the sensor to make sure they were connected properly and it fixed the problem. The dressing was on too tight and it had pulled the transmitter away from the sensor and caused it to not work.

Finishing writing this post after Adele's swimming this morning, her sensor got messed up again. I could not recalibrate and was constantly getting Calibration Errors. It was the end of this sensor. That's the 2nd one that got ruined after swimming. We got 4 1/2 days out of this sensor and are back to finger pricks.

Adele's sugars have been high all afternoon. I have been double correcting and still couldn't bring them down. Here are the highlights:

12:00 pm -> 16.4 (this was right after swimming, gave 1.0 units of insulin)

12:45 pm -> 16.3 (still too high, corrected again, ate and gave more insulin to cover lunch, 2.1 units of insulin total)

2:40 pm -> 16.1 (still too high, gave another 0.7 units of insulin, no food)

3:40 pm -> 17.1 (still going up even after all that insulin, gave another 0.8 units)

5:35 pm -> 16.5 (still too high, it just won't go down, changed her infusion set, corrected, ate and gave more insulin to cover supper, 1.9 units of insulin total)

7:00 pm -> 7.4 (finally Adele's sugar has started to come down, maybe it was the old infusion site that wasn't working properly?)

We're still not giving up on the Continuous Glucose Monitoring. We're not risking inserting a new sensor tonight since Adele is swimming again tomorrow morning. Maybe tomorrow night or Monday? I need to keep searching for something better for Adele. Improvements will not happen by never trying new things and taking risks. She really likes her CGM when it is working as it should.

Looking forward to the Telus Walk to Cure Type 1 Diabetes tomorrow!

Thanks for reading...

CGMing part 2...

I think that one of the worse thing that a parent goes through is seeing their child suffer. Last night Adele was terrified of the long, thick needle that was going to be injected into her abdomen in order to insert her Continuous Glucose Monitoring sensor. Even with the Emla anesthetic cream, she is still terrified of the needle insertion, crying and holding onto her mother with all her might. As the person holding the needle, just about to push the release button, I felt like I was just about to stab my own daughter. I saw the fear in her eyes while she was trying so hard to be brave. Every single cell in my body was hating playing the Type 1 game so much at that very moment. I felt nauseous. There are good days and bad days while gaming. This was a very bad day.

What made it that much more difficult was that technically the Continuous Glucose Monitoring was not necessary to manage Adele's diabetes and keep her alive. We were getting the job done with finger pricks. The thing is that in order to have good glucose control while playing the Type 1 game, you need to know where the blood sugar is going. Simply knowing where it is right now is not enough. A low or high needs to be prevented before it happens instead of simply treated when it occurs. And to get a sense of where the sugar is going (either up or down) you need to test often. We got our best A1C (3 month average blood glucose level) this month, but needed 15 or more finger pokes per day to achieve this. And even with all these needles, her A1C is still not as good as a non-diabetic.

So, what do we do? I have made a promise to myself to do every single thing in my power to help find a cure for Adele's chronic disease sooner than later and to give her the best possible care in the meantime. It's my gift to her as a child until she takes full responsibility of playing the Type 1 game. Today, an insulin pump with Continuous Glucose Monitoring is the best tool available to help keep her blood sugar as close to normal as possible. It's the treatment that is closest to a healthy pancreas while helping avoiding lows and highs. Am I fullfilling my promise or am I being selfish in "forcing" this on Adele for my own piece of mind? Once the sensor is in and calibrated, it is an amazing tool that gives us much more piece of mind than finger pokes alone.

So, after the sensor insertion, lots of crying and consoling, an infusion site change (separate catheter inserted under the skin for insulin delivery), CGM calibration and a high blood sugar (17.7), I went to bed exhausted and confused...

And so many people think that all there is to Type 1 diabetes is simply avoiding sweets...

Type 1 CGMing

We've got 1 week in with Adele's new pump and Continuous Glucose Monitor (CGM). We are very fortunate to have an insurance plan that enables us to use this new Type 1 game technology as it is very, very expensive. The new pump with the CGM transmitter and 4 CGM sensors cost over $7000. It's sad, but success while playing the Type 1 game is very dependant on the size of your wallet (or your insurance plan). Not all players can afford the same level of care. Very sad for the genetically disadvantaged but true...

After a full week using the new system, here are my impressions:

The good - you can set low and high blood sugar alarms, it saves Adele's fingers from most of the finger pricks that she gets when not on the CGM, it is very practical while we're out and about - you don't need to stop and test, you simply quickly glance at the pump and can see her blood sugar at that moment as well as a graph showing the trend in the last 3 hours (or 24 hours). The pic above was upon waking this morning. CGM said 6.9 and fairly steady for the last 3 hours which means basals are good. The blood glucose meter (finger prick) said 6.1 - pretty close.

The not so good - the sensor needs to be changed every 3 to 5 days (at $50 a sensor), the transmittor needs to be recharged (took about 15-20 minutes after 5 days of use), once the new sensor is inserted there is an initialization period of about 2 hours after which you need to calibrate (test blood sugar using the meter and a finger prick then enter the value in the pump) and then recalibrate within another 6 hours - you need a good 4 - 5 hour period following a sensor change to be good to go which means immediately after supper during the week or on the weekend, recalibration is also necessary every 12 hours or less after initial calibration, if sensor is not inserted properly - many errors and pump alarms, sensor readings are not as precise as blood glucose readings using the meter and a finger prick (can be up to 20 % off - or more in my experience if the blood sugar is changing rapidly), Adele is terrified (and cried lots) when inserting the sensor (even with the Emla cream that supposedly numbs the skin).

So, even if my "not so good list" is longer than my "good" list, we're going to continue using the system. We may go off it from time to time in cases when we just don't have the 4 - 5 hours to change and calibrate the sensor or if we're getting recurrent error alarms during the day. After playing the Type 1 game for over 6 years now, it is an amazing, unexplainable feeling to simply be able to look at Adele's pump to see where her sugar is at and where it's going. It gives us an added sense of security. Already, she's had less lows this past week since on the CGM system. Another drawback is having 2 insertion sites on her body - 1 catheter for insulin delivery and the sensor to read glucose values (no they're not integrated together - the catheter needs to be changed every 3 days, the sensor can stay longer - up to 5 days).

How does Adele feel about the system? Like I mentioned before, she is terrified on the sensor insertion. It's done using a spring loaded pen-like device and the needle is thicker than the infusion site catheter that she is used to. Hopefully this will get better. She says it hurts more than the other infusion site (it needs to go deeper), but still understands that it saves her finger pricks in the long run. She's quite the trooper and my hero... I'm not sure I could handle all those needles and pokes as well as she does. She's an amazing Type 1 player !

TEAM ADELE will again be walking in the Telus Walk to Cure Type 1 Diabetes on June 7th. You can pledge our team here (100% tax deductible):

http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&eventID=633&participantID=4826

Thank you

Beyond the surface

One of the things that makes Type 1 Diabetes awareness difficult for non-players is that most Type 1 diabetics appear to be healthy. Adele goes to school, plays, runs, swims and bikes just like other "normal" kids her age. She doesn't have any visible physical characteristics that indicate that she has a chronic illness (well except for her pump and "mangled" fingertips). She acts normally most of the time (unless her sugar is low, but she can bounce back from this in a matter of minutes), she's not in a wheelchair or physically crippled in any way. And the biggest Type 1 misconception - yes, she CAN eat sweets like everyone else on occasion. She can't feel high blood sugars or sudden drops. All of the Type 1 turmoil is going on inside of her body, silently... That's what people not affected by Type 1 Diabetes need to know. Type 1 Diabetes is a silent, chronic, complex and serious disease that requires alot of very hard work... and without any guarantees whatsoever for a future without complications.

As far as our gaming this past week, Adele's sugars have been all over the place the last few days. Either way up, then crashing down... Scales that had been working aren't any more. Sleep has been in shorts intervals. I'm currently making changes to hopefully make things settle down. That's what the game cycle is all about for us...

Friday, May 8th, Adele's wake up sugar was 16.6 (way too high) and at 11:00 pm she was 3.1 (way too low). She fluctuated between these 2 values the rest of the day.

Saturday, May 19th, the low point was 2.4 (way too low) at 3:45 in the afternoon and the high point was 22.7 (way too high) at 10:00 pm. A high blood sugar like this before bed means some good "sleep-deprivation" training !

Sunday, May 10th, she dropped to 3.6 (too low) at 9:55 am and shot up to 16.4 (way too high) at 10:50 pm. Another night of short but frequent sleep intervals...

Monday, May 11th, woke up at 15.4 (way too high) and went low in the school bus after class (3.6 - too low, especially while unsupervised in the bus!).

Tuesday, May 12th, no lows today - changes that I have been making seem to be helping so far. Adele's sugar did shoot up to 15.3 at 8:30 pm just before she went to bed though.

Adele should be switching over to her new pump with the Continuous Glucose Monitoring at the end of this week. Details will appear in upcoming posts...

I don't want to play anymore...

After a real good week, Adele has started to become more and more sensitive to insulin. Yesterday, she had really good blood glucose values, but needed to eat extra carbs in between meals / snacks to avoid going low. I hate force-feeding her like this.

Because of this increased insulin sensitivity, I backed off Adele's insulin a bit today to avoid the extra snacks required yesterday. This seemed to be working very good until around supper. Her sugar was 3.7 before supper (anything below 4.0 is considered low). I need to back off her insulin even more at her afternoon snack tomorrow and it should fix it. As I was eating a late supper around 7 pm, Adele started eating from my plate with her bare hands. I told her that it wasn't snack time yet, that she needed to go take a shower and would eat afterwards... unless she felt low. She said she didn't feel low but was just very, very hungry. Again she started eating from my plate. She was acting like a starving homeless person who was so hungry that all that mattered was to eat. Table etiquette and manners were not considered since survival was the only thing of importance in this state. This is not like Adele. She then tells us that she feels dizzy and weak, so we test her right away... 1.8 !!!

This is very, very low. We give her juice right away, Dex 4 glucose tablets, Crispy Mini rice chips, a banana. Her brain in it's glucose-deprived state was telling her that she needed to eat... right now in order to stay alive. She started shaking and had a hard time sitting down, every cell in her body was struggling to keep functioning and maintain life. So after about 45 grams of carbs, 15 minutes later her sugar had gone up to 4.4. Now, at least she's out of danger. She's still hungry. The glucose level in the blood had gone up, but the cells still didn't get enough sugar yet. After her snack, my math gives me close to 100 grams (mostly fruit and low-sugar cereal for the remaining 65 grams). Now I need to bolus (give more insulin) for part of these carbs. If not, she will surely go high. But how much insulin do I give? I no longer have confidence in the scales that I've been using after this very low blood sugar. I hope my guesstimate is good... I want to sleep tonight.

I don't want to play the Type 1 game anymore... Unfortunately that isn't an option right now.