I love Type 1 Diabetes

What would you do when a doctor tells you that the diagnosis is Type 1 Diabetes, a chronic disease that occurs when the immune system mistakenly destroys the body's ability to metabolize sugar leaving patients insulin-dependant for life? Presently, it can't be prevented and there is no cure. It is humanly impossible to control this sugar metabolism as well as the normal body does for a non-diabetic, but the better control that you can achieve, the less chance that long-term complications will arise. Good control "lessens" the chances of developing blindness, kidney failure, heart disease, nerve damage... but there are absolutely no guarantees. For over 200,000 people in Canada, this is what they are facing. How would react to this news? What would you do?

For us, this news was given to us a little over 7 years ago, so I've had a while to think about it. As a parent of a Type 1, the single thing that I would most like Adele to achieve is to learn to LOVE her Diabetes. Once true life-long love is achieved, all else falls into place. She will take care of it, work at it, continuously try to learn about it and recognize the strength that it has given her. Type 1 robs us of alot, but like every challenge, it breeds growth and creates opportunity. There is ALWAYS a choice to be made. What would you choose? So that's the goal. Now how do I help Adele get there?

In the meantime, the Type 1 game continues. Adele's sugars have been pretty good, with some ups and downs the last few days. I'm catching the lows and highs before they happen, but I'd like to be able to do this with less extra snacks and insulin corrections. Here are some highlights:

Thursday, November 5th

7:55 am -> 9.5 (too high before breakfast)

8:55 am -> 8.0 (going down, maybe too fast?)

9:35 am -> 5.9 with one arrow down on her CGM (yup, she's dropping too fast, gave 18g carbs before recess)

10:10 am -> 6.0 (low avoided)

10:50 am -> 7.9 with one arrow up on her CGM (going up too fast, gave 0.7 units insulin)

11:45 am -> 9.7 (too high before lunch)

1:05 pm -> 6.2 with one arrow down on her CGM (dropping too fast, gave 6g carbs to avoid low)

2:20 pm -> 10.1 with one arrow up on her CGM (corrected with 0.6 units insulin before she got on the bus)

3:15 pm -> 8.7 with one arrow down on her CGM (going down before snack)

5:00 pm -> 7.4 (good before supper)

7:00 pm -> 8.8

9:50 pm -> 11.1 (gave 0.2 units insulin)

10:45 pm -> 11.2 (gave another 0.2 units insulin and went to bed)

Friday, November 6th

1:00 am -> 7.2 (reduced basal insulin to 50% for 1 hour to make sugar go up a bit)

7:00 am -> 7.7 (good sugar before breakfast)

On a final note, November 14th is world Diabetes day. Help us raise awareness by telling a friend and helping us spread the Type 1 love !!!

Happy Anniversary !!

Anniversaries are a time of the year where people may celebrate. They are a reminder of how long it has been and how long we've come. They remind us of all of the work that we have done. They remind us of our survival.

For us, October 31st not only means Halloween, but the anniversary of Adele's Type 1 diagnosis. A Type 1 diagnosis on Halloween... How ironic. Adele was constantly thirsty and soaking diapers non-stop in October, 2002. I had a feeling something wasn't quite right, but this was only a few months after her and my Celiac disease diagnosis. After a bit of research, I had already associated the symptoms with Type 1 Diabetes before calling our pediatrician asking for a Diabetes test. The doctor told me that the test for Diabetes was done using urine, so I dropped off some of Adele's urine at the hospital on Halloween morning. She was peeing so much by this point that I probably could have just wrung out her diaper and I would have collected more than enough. I couldn't concentrate at work that day. I just knew that our life was going to change based on the outcome of that urine test. I was right. "Go easy on the Halloween treats tonight" were the words that the pediatrician told me on the phone when she called. She told us that they had found sugar in Adele's urine and that it could be Diabetes but that it could also be a sign of some other type of infection. I could read between the lines, I knew she was just trying to alleviate the shock. We were told to head for the hospital to be admitted and for more tests. We should have gone at that time on Halloween night, but she then told us that we could wait until the first thing the next morning. We have come a long way in 7 years. But then again, I can't help but think of all of what these 7 years of Type 1 gaming have done to Adele's body... Then I tell myself to not go there since I can't do any more than I'm already doing.

Halloween always wakes up mixed emotions inside of me. It reminds me of how long we have been playing the Type 1 game. With every year comes the increased risk of developing complications. It also reminds of how society associates fun and rewards with eating junk food. And then we wonder why North Americans are so unhealthy.

People sometimes ask us if we bother trick or treating since Adele can't eat the treats? This is a misconception. Adele can eat some treats as long as they're Gluten-Free (because of her Celiac disease) and preferably in moderation. Her body no longer produces insulin like other non-diabetics. She needs to get her insulin from an external source. Technically, she could eat as many treats as she wants if she also receives the right amount of insulin. But in reality, a huge amount of carbs makes for a large amount of insulin and a greater risk of a high or a low blood sugar afterwards. We choose to let her have treats in moderation (like we would if she did not have Type 1). This is much better than the old school Type 1 treatment that did not allow any sweets at all. New fast-acting insulins and intensive therapies require much more work, but also bring the Type 1 gamer's life closer to that of a non-diabetic. For now the journey continues... The journey towards the dream: a cure for Type 1 Diabetes, and the journey of doing everything in our power to help make Adele's life as close to normal as possible in the meantime. We WILL NOT give up until we succeed...

Flipping out

The past few days had been good. So good, that I caught myself saying to myself that playing the Type 1 game ain't so bad. Now, I've been playing this game long enough to know that I shouldn't be telling myself such things since it is always followed by a reminder of how difficult a game this can be.

This last Continuous Glucose Monitoring (CGM) sensor has been working very well. We even got an exact match in readings when we calibrated on Wednesday morning. Adele was all excited that both the CGM and her meter returned the exact same blood glucose value. We even took a picture.

Today, the morning started with a low (3.7). Her CGM said 5.0, a bit off, but not too bad. I backed off Adele's breakfast insulin bolus since she was swimming at 10am. She went up to 9.0 before starting to come back down before leaving for the pool. She ate a snack and I didn't bolus. She was 8.9 before getting into the pool. Since her breakfast bolus (1.4 units) had not yet peaked and that she was on her own during her 1 hour swimming lesson, I gave her 1 Dex tablet (4g carbs) just to make sure. She was 12.1 after her swimming. Less snack (or a bit of insulin) would have been best, but that's the way it goes sometimes. I gave 0.8 units insulin to bring this down.

After swimming, we went to the market and she ate a sorbet followed by her lunch. Less than 1 hour after lunch, she's already low (3.7). I turn off her pump for 1 hour and give her juice and crackers. 1 hour later she's just 4.2, so she eats a few more crackers and her pump is turned off for another hour. She's low and just can't seem to go up. A few hours later, before supper, her sugar is 8.3. One hour after supper her pump says 5.6 with 2 down arrows which means she's dropping fast (likely already in the 4s or 3s). She was very, very sensitive to insulin which was causing her sugar to drop all afternoon.... Until tonight.... I backed off insulin to cover her evening snack since she was so low all afternoon. But then, suddenly things flipped and she became very, very resistant to insulin. Her sugar climbed to 17.5 before she went to bed, I correct with 0.6 units. One hour later, she went up to 18.9. Arrrrgh !!!!! I corrected again with 1.0 units. Will it be enough or too much? Who knows? It's just another day playing the T1 game.

Which dog am I feeding?

I can't believe that we're already in mid October! We were in August and then BAM, we're past Thankgiving weekend and looking for tuques and gloves. The school routine is now in full swing. I talk to Adele's teacher's aid several times during the day. She tells me Adele's sugars and I tell her how much insulin she needs to take or if she needs extra snacks. Then, every weeknight, there's homework and the infamous "preparing the next day's lunch" task. Adele needs to bring her own lunch because of her Celiac disease (wheat gluten intolerance) and we also need to calculate the carbohydrate content of everything in her lunch bag in order to be able to calculate how much insulin we think she needs after eating. This task is not the most popular at our household, but it needs to be done.

Adele has been wearing the Continuous Glucose Monitor now pretty much every day. She actually prefers to have it on since it makes monitoring her sugar at school much easier. She doesn't need to stop doing what she's doing for a finger prick. She just glances at her pump whenever her teacher's aid asks her what her sugar is. Like I've mentioned in previous posts, it is not always easy to calibrate, but we love it when it is working correctly.

Last Saturday, after getting back from the market, Adele said she felt low. She had eaten a sorbet (quick sugar) and we had guessed the carb count. Her pump said she was 5.2. We always test if she says she's feeling low. The finger prick gave us 2.4! She ate some much needed sugar and we re-calibrated the Continuous Glucose Monitor (CGM). The rest of the weekend was lots of ups and downs. CGM showed that her sugar was trending down Sunday afternoon before picking apples, so I turned the pump off for a short while which seemed to fix the problem. Her sugar had stabilised before supper, but then started to shoot up in the evening after our Thanksgiving feast at my parents. It went as high as 19.0 and had a hard time coming down even after double correcting. Holiday Monday was the same, lots of ups and downs. I find that her sugars are usually more stable during the week when she's at school since she is on a fixed schedule. This is normal and just a reality of the Type 1 game.

This past weekend, we were on a CGM vacation. Her last sensor wasn't working properly at the end of the week. It kept on giving false readings, so we took it out. The CGM alarm kept going off indicating that Adele was low and we'd do a test with her meter and she wasn't. We didn't have time to put a new one in, so we're back to old school finger pricks for a few days. Yesterday, we went to Camp Wildwood near Bouctouche. It was an activity organized by the local Type 1 Diabetes local support group. We had the chance to meet Sebastien Sasseville (http://www.sebastiensassevilleinspires.com/), the first canadian with Type 1 to make it to the summit of Mount Everest. It was very interesting hearing what he had to say during his presentation as well as chatting with him afterwards. Adele brought a friend and they really had a good time. The evening ended with a bombfire. And I came back with a renewed sense of hope for Adele's future after Sebastien's talk. My dream is for a cure first and foremost, but also for Adele to thrive despite (or even because of) her diabetes like Sebastien Sasseville. Until then we'll try to keep a positive attitude while playing the Type 1 game and hope it rubs off. Or like Sebastien would say "Feed the GOOD dog and starve the bad dog".

An optimistic view

I started this blog in order to try to educate people on what Type 1 Diabetes really is. I didn't know what Type 1 Diabetes was until it was forced upon our family. How could others who weren't affected know? I found it very frustrating when friends didn't get it. I found it impossible to explain how Type 1 affects our day to day life in a simple conversation. I wanted to share specific details on what we go through every minute of every day in order to keep Adele alive and give her the appearance of health. I wanted more people to realize the severity of the chronic disease and the long term effects that it has on it's sufferers. That is still the main goal of the blog.

But... I have also been receiving feedback from families who already know what it's like to play the Type 1 game since they've been chosen as players as well. Some tell me that this blog makes them feel less alone knowing that we're going through the same thing. I am happy that I can help them, even in a very small way, and give them hope. Today's entry is for these people. I hope it inspires you and helps you grow...

Instead of talking about all that is taken away from Type 1 gamers, I would like to list things that are gained from playing the Type 1 game.

If someone would have told me 10 years ago that today I would be parenting a child with a chronic disease requiring as much work as the Type 1 game, I would have told them that I could not do it. I would have told them that I could not survive such constant stress. I would have told them that I was already stressed to the max and that something like that would surely push me over the edge and that I simply could not do it. I would have told them that I didn't have what it takes. I would have told them that I could never hurt my child with a needle and that there is no way that I could calculate a drug dosage before adminstered it to my own child to keep her alive, and if I were to make a mistake and give her too much, that it could also kill her. I would have been wrong.

Playing the Type 1 game has taken it's toll, but I am surviving and it has made me discover inner strength that I never knew was there. I feel lucky in a way to have been given the opportunity to grow, to have met amazing people through my involvement with JDRF and to have been able to help other Type 1 gamers suffering just like me. Hardship breeds strength. It forces you to really take a look deep, deep inside of yourself. I am amazed at how far we have come since the game started. It has taught me (and Adele) to suffer. Living is impossible without suffering. Society teaches us that suffering is bad. Without the contrast of hurt, how would we know what joy feels like? I mean, I don't believe in physically causing injury to someone to make them grow, but since suffering is INEVITABLE, isn't it beneficial to raise our "pain threshhold"? It has also made me appreciate the small things. Even a very ordinary weekday with good blood sugars which help Adele feel as normal as possible really, really makes me happy.

Don't get me wrong, it's been a rollercoaster ride (and not in the fun way) and it still is. I'd stop playing the Type 1 game in a fraction of a second without hesitation if I could, but I can't. So why not try to find some positive in all of this?

Does anyone know the truth?

I came across a doctor's website while looking for an A1C to average blood glucose conversion chart a few days ago. This doc was saying that the North American guidelines for blood glucose control were not tight enough. His point of view was that if diabetics didn't have perfect blood glucose control that they were basically setting themselves up for long term complications. The less control, the sooner these problems would arise. The website is http://www.rajeun.net/HbA1c_glucose.html.

Then today, I was watching the Dr. Oz show (not really sure how valid his medical opinion is given it's a TV show?) and he measured the A1C of a severly overweight non-diabetic woman who needed to loose some weight and get healthier. Her A1C was 6.2 (average blood glucose of 8.0). For a Type 1 Diabetic, this would be a very good value. Adele has never been that low. Her best ever value was 6.5 (with too many lows really) and her last value was 7.7 (with alot less lows). Dr. Oz said that anything above 6.0 was a concern. So, what does that mean?

This makes me quite depressed. The pediatric endocrinologists at IWK in Halifax are telling us that it's OK to even have an A1C in the 9's (average blood glucose above 13.6) for a child Adele's age. Now, who's right? Are North American doctors giving diabetics a false sense of security by keeping A1C guidelines so high? Given that the perfect control (same as a healthy non-diabetic) is "virtually" impossible while playing the very, very complexe Type 1 game, are these guidelines so high simply to avoid severe and very dangerous lows? Are these guidelines so high to avoid Type 1 game burnout trying to bring blood glucose down to normal values? Looking at the numbers too much can really get to you after a while, since there is always room for improvement as well as so many outside factors that come into play.

So, are we kidding ourselves thinking that Adele will not have long-term complications simply because our control is very good (even excellent) according to the North American guidelines or are we just delaying the inevitable? Are we being lied to? Maybe this is just what I need to push me towards ensuring that I do everything in my power to give her the best possible blood glucose control (even if it's not perfect)? It's all that I can do right? Or maybe it's additional fuel for my Type 1 awareness drive and JDRF fundraising so that a cure for this terrible disease is found before it's too late? Hold on tight, this Type 1 ride isn't over yet...

The MBS Cyclebetes 200 and back to school...

I always get emotional each year at the start of our Mike's Bike Shop Cyclebetes rides. Adele and Michele are there. I look around at all the people, supporters and riders that are there essentially because of me. The ride could not happen without the full support from the Mike's Bike Shop cycling club (my friends) as well as all of the volunteers that come together to help with registration, count pledge money, drive the support vehicles and everything else that needs to be taken care of, but I am still the catalyst that started it all. I feel so overwhelmed that all these people step forward and enable me to keep on doing this. I'm a very, very lucky man. Thank you.

Since the 1st ride in 2007, this one was the best in my opinion. We had more riders and raised more money than past years. 60 riders raised $9000 for JDRF. Wow !! I appreciate all the sacrifices that alot of people make to enable this ride to happen. Again, thank you. I want to do everything that I can to help Adele with this Type 1 sentence. The more people can be aware and work together, the sooner my dream will come true...

Last week we went to IWK in Halifax for Adele's diabetes clinic apointment. We go to Halifax once a year to visit her gastroenterologist and we also squeeze in an apointment with the endocrinologist while we're there. It was also time for Adele's 3 month A1C. This test mesures the average blood glucose for the past 3 months. It is used to measure how good of a job that you have been doing playing the Type 1 game in the past 3 months. Adele's result was good, but had gone up since the last the last one (before she was on the Continuous Glucose Monitor - CGM). Why? Were we slacking off in her care? No. I think it is a combination of the fight with the H1N1 virus a few months ago (caused her sugars to go high), getting used to using the CGM and the fact that she has much less lows when we're CGMing. Sometimes an excellent A1C result is also accompanied by lots of low blood sugars, so you need to be careful when interpreting these results. We're going to try to improve for the next one (hopefully no major flus this time around) while continuing to minimize lows. That is one thing that we have noticed since being on the CGM, Adele has become better at recognizing her lows. The hypoglycemia unawareness has been lessened since she is low less often.

So, we're already in week 2 of school. The transition has been going well so far. Adele really likes having her CGM sensor at school since it is much easier for her to check her blood sugar. The sensor insertion is much better as well, so now Adele actually asks for a new sensor as soon as the old one expires.

A few nights ago, Adele suddenly became very insulin resistant in the evening and throughout the night. Her sugar kept creeping up and wouldn't come down even if I was being quite aggressive in giving her insulin. She started in the 12's, then 13's and climbed all the way to the 17's before I went to bed. I double corrected with more insulin and she still wouldn't go below 12. I even brought her nightime basal insulin rate up from 0.3 units/h to 0.35 units/h and she still woke up in the 12's. The two following nights were better, so I left the nightime basal at 0.35.

Then, without warning, this insulin resistance went away. Sunday night, Adele was 7.7 when I went to bed. I set the alarm clock to wake us 1.5 hours later, but for some reason it didn't go off (maybe it did and we turned it off, I really don't remember). I woke up at 2 am (like 3 hours after going to bed) and checked Adele's CGM. It said 5.2 with 2 arrows down (this means that's she dropping fast). I double-checked with a finger poke. Glucometer said 4.2 in blood. So, she wasn't low yet, but I just caught her in time. I gave her 5 gummies and turned off her pump for 1 hour and went to bed. A half hour later her pump alarm goes off saying her sugar is 4.5 (we have the low alarm set at 4.5). I acknowledge the alarm and go back to sleep, she's eaten and her sugar is slowly going up. A half hour later her pump alarm goes off again. Her sugar is still 4.5. I turn off her pump for another half hour, reduce her nightime basal back to 0.3 units/h and go to sleep (finally!). She wakes up at 5.6. I wake up exhausted. There was no mention of nights like these in the Type 1 game brochure. If only we could simply return the game and get our old life back...

Cyclebetes part deux

I'm back to real life after my Accu-Check Cyclebetes national relay experience. I've been feeling withdrawl from the awesomeness that was the Cyclebetes relay, but am still quite busy organizing our local Cyclebetes 200 ride in support of JDRF. Our ride is on Saturday, September 12th. The donation cheque presentation and photos will take place at 7:45 am at Mike's Bike Shop in Dieppe. The ride leaves at 8 am sharp. Drop by to say HI and show your support ! You can even make a whole morning of it by going to the Dieppe market afterwards.

This past weekend, I took Adele and her friend to TreeGo at Centennial Park in Moncton. After a brief training session, they started climbing up the first obstacle which was a climbing wall. I was following them from the ground. Before starting, I asked the staff how long it would take them to complete the kid's course. They told me it took about 1 hour which meant that Adele would be up in the trees for an hour and I would be on the ground unable to physically do anything to manage her Diabetes. Completing the course also requires a physical effort which meant that she was at risk of going low and it requires alot of balance while up above the ground. Since low blood sugar could leave her light headed and dizzy, a low while up there was not an option and very dangerous. So after telling myself that this whole thing was still a good idea, I proceeded to keep a close eye on Adele's blood sugar readings via her Continuous Glucose Montior. Her sugar was in the high 4's before her afternoon snack with a slight downward trend, so I didn't bolus for her snack. A half-hour after that she was still floating in the 4's, so I turned off her pump. An hour after that she was still in the low 5's, so I turned off her pump again for another half-hour. I checked again right before she was about to climb onto the course and she was 8.0 with one arrow up (trending up). I think I overdid it and that the last half-hour of pump being off was a bit too much? I had no idea what effect this activity was going to have on her sugar, so I left things as is. Her pump was back on again, so she was getting 0.3 units of insulin per hour via her basal. I gave her 2 fruit to go to put in her pouch pack in case she felt or went low while up there since I couldn't get food to her.

So, what was the outcome? She rocked the TreeGo course and had a blast ! Her sugar had stabilised at 10.3 (no arrow) when she finished. I gave her another 0.3 units to bring it down. A half hour later she had still climbed to 11.5 so I guess I had overdone it with sugar intake and pump turned off. That's how this game goes, you make the best decision possible given the data that you have and sometimes you get it right, sometimes you don't. And you NEVER, EVER know what the outcome is going to be. That's the constant stress that gets to you sometimes.

Like all other kids, Adele is back to school next week. She will be starting grade 4. I met her teacher's aid this week. We were lucky in that her TA this year is the same one that she had in grades 1 and 2, so she knows Adele and she gets the Type 1 game. Hopefully, the Type 1 game transition back to the school routine goes smoothly...

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...