Christmas Balance

What does this picture of a bunch of bikes in my messy basement have to do with Type 1 Diabetes? Let me explain... This is also a picture of my anti-depressant drugs, therapists and my church benches. All 7 each have a purpose. I visit them regularly. They are quite therapeutic and enable me to re-establish balance in my life. Isn't balance what the Type 1 game is all about? The object of the game is to balance insulin with blood sugar. Like the Type 1 game, collecting and riding bikes to maintain sanity is not the cheapest therapy. But in reality my bikes are an investment because JDRF is over $20,000 closer to a cure because of them. That's how much our cycling club has helped me raise since 2007. This would simply not be possible if not for my passion for the bike. I find that very, very cool !! Passion is contageous. Combine one of your passions with finding a cure for Type 1 Diabetes and join in the fight! Make it your 2010 New Year Resolution!

I hope you all had a wonderful Christmas. We did. So many hours of work, preparation and planning and in about 5 minutes Adele had already opened all of her gifts. What a huge investment for a very, very short return. Ok, so the return may have been short (as in time elapsed), but Adele's excitement and joy made the whole effort worth it. At 9 years old, Christmas truly is magical for most kids and I think we managed to ensure that Adele was one of them. Adele's favorite gift is her new Wii. Actually, the whole family has been enjoying it!

As for the Type 1 game, Adele had a few ups and downs. With all the home-made food, we were guesstimating the carb content quite a bit. We had inserted a CGM (Continuous Glucose Monitoring) sensor on December 22nd and it was working well giving pretty accurate blood glucose readings. We really wanted one on Christmas eve and Christmas day since the daily routine is quite different from other "normal" days. It makes checking Adele's blood sugar so much easier (and quicker) like in church for example when you don't have to take out needles, meter, test strip... We removed the sensor on Boxing day (5 days after putting it in) after Adele begged us to do so. The sensor still worked, but Adele's winter dry skin becomes so itchy after 3 days. She litterally itches the skin right off until it bleeds. The one thing that I find the CGM useful for is to prevent lows. A summary of Dec 26th (after removing the CGM) supports this:

7:45 am -> 2.9 low (52 for US readers)

9:30 am -> 7.2 good (130)

11:00 am -> 2.7 low (49)

12:30 pm -> 10.2 high (184)

2:40 pm -> 17.8 high (320)

4:55 pm -> 8.1 pretty good (146)

6:35 pm -> 2.7 low (49)

8:15 pm -> 6.4 good (115)

10:15 pm -> 3.8 a bit low (68)

11:30 pm -> 5.8 good (104)

So, 4 lows and 2 highs. I'm sure that we would have caught these with the CGM. Because of the dry itchy skin, we have been on a CGM vacation since then, but will be inserting a new one in tonight in preparation for New Years Type 1 gaming. Happy New Year !!

Oh yeah, and thanks for the comments on the last post. I really appreciate your feedback and support.

Merry Christmas !!

The fat lady has not finished singing yet, so the Type 1 game is still on. It's been keeping us quite busy these past weeks with all the special Christmas activities at Adele's school and daycare. These celebratory festivities often involve food treats and a change in the daily routine, both of which force us to make adjustments in our Type 1 game plan. We're all tired, but mostly enjoying the festive time of year. Adele is very, very excited!

My brain has been behaving for the most part. It did start acting up though last week when I came across a story on a Diabetes support forum about a young man who died in 2002 while sleeping when his insulin pump malfunctioned going into prime mode and "priming" (or injecting) the entire contents of his insulin cartridge. He never woke up. This story scared me so much that I couldn't get it out of my head. I initially thought about keeping these thoughts to myself, but decided to share here to make a point of how delicate the Type 1 game is. We're trying to constantly maintain a balance using a very, very powerful drug called insulin. With over 100 units of insulin in Adele's pump (way more than the lethal dose) directly connected to her body, it's basically like walking around with a loaded gun pointed at your head. Similar to a gun, there are safety features in the pump that minimize the likelyhood of a malfunction, but the analogy makes our reality quite scary. How would you feel if your child was living with a loaded gun pointed to her head?

I still drive my car and my bike even if accident statistics tell me that I shouldn't, so I have decided to let it go. I've also decided to stay away from Diabetes support forums for a while. Reading about long-term complications, problems and tragedies like this doesn't help me. Even if the positive information on those sites is helpful and encouraging, the also present negative aspects and comments just get to me too much. I may just be burying my head in the sand? If I am, so be it...

Adele wrote a letter to one of her heros (Santa) a few weeks ago. This gave me the idea to also write a letter to one of my favorite heros:

Dear Adele,

I often tell you how proud I am of you, but still don't think that I tell you enough. I am proud of all of the hard work that you have done in school so far this year which resulted in a very, very good report card. I am proud of how you handle the pain, inconvieniences and sacrifices that you need to make because of your Diabetes. I am proud of you when you manage to maintain a brave face in spite of all of the needles that we need to poke you with. I am proud of your awesome performance in your school Christmas concert as well as the Christmas show that you did at daycare. I am proud of your swimming accomplishments this past year.

Continue to live without self-pity and never, ever let your Diabetes hold you back from acheiving your dreams of becoming either a teacher or a doctor, representing Canada by swimming in the Olympics, owning a big house with a pool and getting married and having the 2 kids that you often talk about.

I'm sorry that I sometimes hurt you with the multiple needles that you need to stay alive. I'm sorry that I sometimes lose patience with you when your blood sugar doesn't cooperate with your treatment. It's not your fault whatsoever and I will try to not take out my Type 1 game frustrations on you. All that I want is for you to be happy and as healthy as possible.

You're growing up to be a very, very special big girl with many qualities. I hope that you can one day find a reason for all of your Diabetes suffering and that you are able to use this to continue to make a difference.

Merry Christmas Adele

I love you

Papa

What happens if you can't fly?

Loving diabetes has been a challenge these past few days. Pretty much overnight Adele has become very resistant to insulin for no apparent reason. After a good week last week, the insulin that used to be mostly "just right" is no longer nearly enough. She doesn't have any cold or flu symptoms, but her blood glucose values have been very difficult to bring down and under control.

Playing the Type 1 game is not an exact science. One of the best Type 1 game quotes that I've read in a while was "doesn't anyone know that my Diabetes management is really just winging it?". This is so true especially for us the past few days. The Type 1 game is played by learning from your mistakes or by what has worked in the past. The last few days, what was working in the past no longer worked whatsoever, so what else could we do but "wing it"? The problem with this is that it's very stressful and there is a pretty big chance that the results obtained are not what we're aiming for. So goes the Type 1 game, always there to remind you that you haven't beaten it and that you should NEVER EVER be caught off guard.

Last night, Adele's sugars started creeping up, 15.0 when she went to bed, we corrected with an insulin bolus, but it still kept climbing. It was up to 17.2 by the time that I went to bed and she had alot of active insulin onboard from all of the corrections that I had been making to try to bring her blood glucose down. So, I "winged it" and gave her another 0.6 units of insulin. This amount was my best guess. I needed to sleep. I set the alarm clock for 2 hours later and crashed as soon as I hit the pillow.

Adele's pump alarm woke me up at 4 am. I had either forgotten to turn the alarm clock on before hitting the sack or Michele turned it off when it went off at 1 am. I have no idea what happened but we slept through the scheduled check? Adele's sugar was 4.3, not low but not high enough to be safe for the rest of the night. I turned off her pump for 1 hour, gave her 7 grams of carbs and tried to go back to sleep. I tossed and turned until the alarm went off at 6:30. Her sugar was 12.5, too high. I had tried to "wing it" and came out short...

A big bolus before breakfast to try and start bringing the sugar down followed by the rest of the insulin to hopefully cover her meal after she finished eating and off to school. Her blood glucose level slowly climbed all morning 16.7, 18.0 and 22.3 before lunch even after being quite aggressive with insulin all morning. Adele felt like crap and we needed to do something, things were quickly getting out of hand. So, I left work and went to pick her up. As soon as we got home, I gave her 2 units of insulin via a syringe and put cream on her skin to freeze it so that we could insert a new infusion set. An infusion set that is blocked means that she's not getting all (or any) of her insulin which could be the cause for the high. We waited for a bit before having lunch (to hopefully bring the sugar down), ate, then inserted a new infusion set and I brought her back to school.

The blood sugar slowly came down but still seemed to be stuck in the 12's (still too high), so I just "winged it" again and upped the basal rate as well as the supper bolus. The result? 3.1 before the evening snack. Hopefully tomorrow I will be better at "winging it"...

The funny thing is that you would never be able to stay employed if you tried to "wing it" like this in most jobs or careers in life. It's a crazy game that we play given the rules and what's at stake, but I guess that there's no time to think about it too much since in the end all you can do is try to "wing it"...

Brain waves

I love my brain. It enables me to think. It enables me to analyze. It enables me to solve problems. It enables me to do my job. But sometimes it gets a little (or a lot) out of hand and just doesn't know when to stop. I've often looked for a switch, but can't seem to find one. Riding my bike helps. Pedaling doesn't make my brain stop, but the thoughts do get clearer which is good.

What can I do? I know, I know it's part of my personality... Or is that just part of the cause? Type 1 gaming by nature requires constant attention where you're always trying to predict where the sugar level is at and where it's going. Even with a finger prick blood glucose test, it just gives you a now picture which will no longer be valid if you wait another 15 minutes. It's 24/7, with no vacations ever, not even during the night. It's the last thing I think about before my head hits the pillow and the first thing in my mind the second I wake up. I even think about it in my sleep. I was in the middle of one of my dreams last night about talking to Adele's teacher's aid about out of control sugars when Adele's pump alarm went off (it actually went off twice, once around 1 am and again at 6:40 am). Both times she was low... And still sound asleep.

Apparently knowledge is power. I agree with that but often my research sends my brain into a frenzy. It makes me second guess what I'm doing or get down on myself when I don't seem to be doing it as well as someone else.

Should we move towards a higher protein / low carb diet to help control blood sugar?

Should we look at the glycemic index of food more?

Should we try to establish a stricter daily routine?

How can we get Adele's A1C as low as some and do these players have too many dangerous lows?

What can we do now to help avoid complications later?

With the holidays coming up, how many treats are too much?

What about alternative medicine treatments like homeopathy and other more gentle and natural treatments?

And how did Halle Berry "cure" herself from Type 1 Diabetes? (http://abcnews.go.com/Health/DiabetesResource/story?id=3822870&page=1). OK this last one doesn't get me thinking. I just find it absurd given it's impossibility. Type 1 needs more celebrity advocates, but not ones that will make stupid claims that only confuse non-players and just add to the confusion between Type 1 and Type 2.

The last few days of Type 1 gaming have been quite "wavy"...

Monday, December 7th

7:00 am -> 7.5 before breakfast
10:10 am -> 6.8
10:45 am -> 4.6 (not low... yet. Adele ate a Fruit to Go to avoid low before lunch)
11:45 am -> 6.1 before lunch (low avoided)
1:10 pm -> 3.6 (low, drank a juice)
2:30 pm -> 9.7 (juice was too much, gave 0.2 units insulin to bring sugar back down)
3:45 pm -> 13.9 (too high, gave another 0.3 units insulin)
5:00 pm -> 9.6 before supper (going down)
6:30 pm -> 4.7 (going down too fast, ate her bedtime snack early)
9:10 pm -> 10.1 (too high, gave 0.5 units insulin)
11:00 pm -> 7.1 (turned pump off for 1 hour to avoid low)

Tuesday, December 8th

1:00 am -> 5.3 (turned pump off for 1 hour to bring sugar up a bit and avoid low - cgm sensor was not working so no alarm if she goes low)
7:00 am -> 9.4 before breakfast (a bit high, shouldn't have turned off pump last night)
9:45 am -> 7.7
10:50 am -> 6.7
11:55 am -> 9.5 before lunch (too high)
1:50 pm -> 12.8 (too high, gave 0.4 units insulin)
2:30 pm -> 17.3 (way too high and climbing, gave another 0.4 units insulin before getting on the school bus)
3:00 pm -> 16.5 (still way too high)
5:00 pm -> 15.7 (it just won't seem to come down!)
8:30 pm -> 11.2 (still too high)
11:00 pm -> 5.2 (finally coming down, hopefully not too much)

Wednesday, December 9th

1:00 am -> 3.4 (CGM sensor low alarm woke me up, ate 5 gummies, pump off for 1 hour)
3:00 am -> 7.2
6:40 am -> 3.2 (CGM sensor low alarm woke me up again, Adele wanted a bagel for breakfast instead of her usual cereal and blueberries which made for a LARGE insulin bolus of 2.4 units, will this be too much?)
9:40 am -> 3.7 (yup, it was too much, drank juice and ate Dex 4 glucose tablet)
10:10 am -> 4.8 (going up now, ate snack, no insulin bolus)
10:50 am -> 6.4 (climbing, gave 0.4 units insulin to prevent sugar from climbing too much, breakfast bolus is no longer active)
11:45 am -> 11.0 (too high)
1:25 pm -> 4.3 (dropping fast, she won't make it to daycare without sugar, drank another juice before getting on the school bus)
2:45 pm -> 5.9

So, what caused these fluctuations? 1 - Nervousness for a school Christmas concert, 2 - A different breakfast with over 4 times the total grams of carbs than her usual, 3 - Type 1 Diabetes, sometimes it's just like that... For us anyway.

If you have answers to any (or all) of the questions above, please please please let me know!

Moderate sized desserts... What am I thinking?

Last weekend was the Greater Moncton Santa Claus parade. I was looking for a picture that was relevant to today's post topic, but couldn't find one. I didn't bring the camera with me during the parade (it was cold and rainy) so the result is an outdated pic taken earlier this fall. Ah well, I felt that this post needed a pic for some reason...

That said, Adele really enjoyed being part of the parade this year on the Moncton Diabetes Outreach Program float instead of spectating. I backed off Adele's supper insulin bolus after an early supper before heading to the parade since she had gone a bit low the few days before. Her blood sugar was trending up a bit when we got to the float. It was 9.0. I gave her 0.2 units of insulin to try to stop it from rising too much and thinking that the supper bolus would peak and bring it down again by the end of the parade. I was wrong. Her sugar was 12.3 after the parade. Whenever our routine changes even a bit, it is difficult to make adjustements since you don't really know how the change will affect blood sugar. One of the other diabetic kids on the float went low. The change in routine seemed to have the opposite affect on her sugar. The Type 1 game is like shooting a gun blindfolded, sometimes you hit the target, often you miss...

Even after over 7 years of playing the Type 1 game, I still haven't really fully accepted Adele's Type 1 life sentence. Upon diagnosis, there was the shock as well as the "Why us" phase. Researching long-term complications certainly didn't help me feel better. But in the beginning you can tell yourself that these complications only apply to those playing the Type 1 game for a longer time period. Now we're in our 8th year. We're no longer "new" players. What do we have to look forward to? Many online support group forums may be helpful for Type 1 players who already have complications and use it as a place to vent and find support, but this only makes me feel depressed. I did manage to find a few more optimistic Type 1 players online who had minimal or no complications after 20, 30 and even 40+ years of Type 1 gaming. That gave me hope.

What can I learn from these gamers that will help Adele stay complication-free as long as possible or until a cure is found? One thing that I found with most of these "survivors" is that they had a positive attitude, incorporated exercise in their lives, tried to minimize stress and ate a healthy whole-food diet. If I could transfer the disease onto myself, I believe that I would have the personality (ok maybe not always the low-stress part :-) ) and self-discipline to live like this and maximize my chances of staying healthy. There are no guarantees. Non-smokers are not immune to lung cancer and even the best controlled Type 1 players still don't have the same level of control as the non-diabetics and they can still develop long-term problems. I can't transfer the Type 1 to myself but I can live like I would if I shared the disease with Adele. This is the reason for me to really, really try to live healthy and be a role-model for Adele. No more binging on too many chocolates during the holidays. No more HUGE deserts at family gatherings. I know that it's totally not the same for a non-diabetic to pretend to live like a Type 1 player, but committing to this at the very least forces me to think before acting or reacting which is the one of the basic Type 1 gaming skills. Hopefully this will rub off. Hopefully, if Adele decides to adopt this way of living when she gets older, she'll have confidence in the fact that it's totally possible!

It may work? Until she enters the "my parents who I once thought were cool are in fact the opposite of cool which means that in order to be cool I should do the opposite of what they do" phase of adolescence... Oh boy, now time to work on reducing my stress level...

What would happen if there was a cure tomorrow...

What would happen to the pharmaceutical companies that make millions on Diabetes supplies? What would happen to the pharmacies that get hundreds of dollars each and every month from lifelong customers like our family? What would happen to the companies that make insulin pumps that cost over $7000 each plus supplies to be able to use it?

I have a pretty good idea of what would happen to our family since I dream about a cure quite a bit, but what would happen to all the other people mentioned above who do not play the Type 1 game themselves but a good portion of their paycheque comes from the people who do? How would a cure affect the world's business economy?

Since the discovery of insulin in 1921 by Frederick Banting and his assistant Charles Best, the Type 1 Diabetes treatement has essentially stayed the same - inject insulin to keep the person alive by preventing blood glucose from rising too much. Most advancements have been in developing tools to enable Type 1 players to have a better chance of keeping their glucose levels closer to normal. And most of these advancements are not even close to being affordable for the middle-class player with no insurance.

How fast could a cure be found if every single person on this planet really, really wanted one?

As far as our own Type 1 game these days, Adele was a bit high this morning (11.9). Her CGM had one arrow up meaning that her sugar is trending up. This is expected since her pump was disconnected from her infusion set when she woke up. She said that she remembers the pump tubing being caught in her blankets and that she had to pull on it to get it "unstuck". I'm not really sure when that happened but she wasn't getting any insulin after her pump accidentally got disconnected which caused the high sugar. We reconnected, ate breakfast and sent her to school. Her sugar climbed up to 20.1 one hour after her breakfast, not the best way to start the day. Apparently the insulin debt from the time that she was disconnected was greater than I thought. Time to rethink our game plan for today and try to bring things back under control...

6 month report card

We just got Adele's latest A1C result this week - 8.0. What does this mean? The Hemoglobin A1C test measures long term blood glucose control (over the last 3 months), so a lower result is the goal. An A1C of 8.0 translates to an average blood sugar of 11.6. Her last A1C before this was 7.7 and the one before was 6.5. Crap, it's getting worse and worse.

The 6.5 A1C was her best ever and the last one before we started using the Continuous Glucose Monitor (CGM) this past spring. We were on a winning streak without any colds or flus. But she did have lots of lows. Often in the 2's. And she also rarely felt her lows which is really not good and dangerous. The 7.7 A1C was after the H1N1 flu. The virus had wreaked havoc on her sugars, which was one of the causes for the A1C rise. There's no simple logical explanation for the 8.0 A1C. So far, her A1C has gone up since we began using the CGM. The opposite is usually the case. Is it worth all the effort? Let's see what the 1st semester report card says...

We started using the CGM back in mid May. We've been trying to get 6 days out of each sensor. On average, they've been lasting about 5. We currently have the low alarm set at 4.5 (if blood sugar is 4.5 or lower, the pump alarm will go off). We have not set or used the high alarm (simply to avoid too many annoying alarms throughout the day). Generally, Adele has been wearing one sensor per week. This gives us 1 day (if the sensor lasts for 6) or more days of finger prick after the sensor is removed until a new one is inserted. We're continuously learning and here are our impressions on this new technology.

I'm a glass half full kind of guy, so I'll start with what we like:

• An added sense of security. I always feel much better when Adele has a sensor on and that I am confident that the system is calibrated correctly. This is especially true when we're out and about, during the night or when she's at school or at a friend's house. The low alarm set at 4.5 eases some of the hypoglycemia (low blood sugar) worry. It's like removing the blindfold that prevents us from seeing where her blood glucose value at a given moment because without it I ALWAYS wonder where her sugar is at and where it's going.
• Less finger pricks. Adele's fingers now have a bit of a chance to heal from all the finger pricks. In order to have good blood glucose control you need to know where the blood glucose level is going so you can make corrections before it's too late. The CGM gives blood glucose readings every 5 minutes as well as a graph (and arrows) indicating the direction that the blood sugar is going in - either rising, dropping or relatively stable.
• Less interuptions in Adele's activities. It litterally takes a few seconds to check her sugar. I simply ask her where she's at and she glances at her pump and tells me. No need to get needles ready, handle meter and strips... We really appreciate this if we're outdoors or at the mall... This also makes most middle of the night checks much less gruelling - if she's high or low and there's a bit of doubt as to the precision of the CGM reading, we still do a finger poke.
• More blood glucose values. This enables us to make small adjustments thus maximizing our chances of a good blood sugar value during the middle of the night check. I sometimes get OCD checking 2 or 3 times per hour before going to bed.
• Less hypoglycemic episodes and more hypoglyemia awareness. Before using the CGM, Adele would go low in the 2's about 1 or more times per week. Now, it's like once a month and usually due to a sensor that is off and needs re-calibration.

And now what we don't like as much:

• Painful insertion. The emla cream helps, but this is still not a very pleasant experience. Adele is quite the champion though and now goes through the sensor insertion without shedding a single tear.
• Another infusion set. The CGM adds another foreign object inserted into the skin and attached to the body. This also adds a sensor insertion about once a week in addition to infusion set changes every 3 days. It has added more tasks (which require more time) to our Type 1 management schedule.
• Itchy and chaffed skin. The skin under the sensor traps moisture. Adele starts complaining of the area being very, very itchy after about the 4th day. Some days she just begs to remove it in order for her to itch the skin underneath. The skin under the sensor become red and inflammed (like a diaper rash) after 5 or 6 days.
• Blood Glucose readings every 5 minutes can sometimes be too much information. I've often found myself correcting too soon after a bolus if I see arrows and a blood sugar trending up. Because of the delay in reading updates (CGM uses sugar in the interstitial fluid and not blood) the CGM is a bit behind if the blood glucose is changing rapidly. I need to not be as quick to correct a high since often the sugar is on it's way down, but not reflected yet by the CGM.
• It sometimes gives false readings when not calibrated properly. This weekend, upon waking, Adele's CGM indicated that her sugar was 4.5. I needed to calibrate (by doing a finger prick and entering the result in the pump). The meter indicated 2.6. She was low and the CGM had not caught it.
• Expensive and not covered by all insurance plans. We're lucky in that our insurance plan is one of the first to cover the CGM supplies. We do test less when she's wearing a sensor, so in the long run they do save some money on strips.

So 5 pros and 6 cons (the last one does not apply to us, so 5 cons really). So, it's a tie if you're counting. Given this, the final grade is that we'll still continue using the technology. We've learned alot since we've started, so I'm optimistic that things will even get better still. My goal is to lower her A1C (low 7's or high 6's) while still keeping lows at bay. That is the goal and I still think that the CGM is a very useful tool to help us get there.

In the meantime, happy Type 1 gaming and look out for the JDRF float in the Greater Moncton Santa Claus parade on Saturday, November 28th. Adele is very excited to be part of the parade this year!

It's all new, but still all the same

Last Saturday (November 14th) was World Diabetes Day. Our whole family including my parents, sister's family and in-laws attended the Famille Arseneault benefit concert at the Capitol theater. It was a great evening that raised money for JDRF as well as brought awareness to our cause.

I'm not sure how it is for other Type 1 gamers, but Adele's insulin needs and patterns are very, very different during the week compared to weekends. After some pretty good numbers on Thursday and Friday, things got a little out of control during the weekend. Adele's sugar seemed to be either high (above 10) or she needed to take in extra snacks to avoid a low. I'm not sure why she suddenly became very, very sensitive to insulin after lunch? On Saturday, I thought it was due to swimming, but the same pattern also happened on Sunday without any swimming. Our bodies are soooo complex, a fact that becomes very evident when playing the Type 1 game.

Here are the highlights of the past few days:

Saturday, November 14th, 2009

7:15 am -> 2.6 (sensor indicated 4.5 before calibration, ate 35.9g carbs for breakfast, 1.6 units insulin)
9:30 am -> 5.4 (ate 40g carbs, 1.0 units insulin)
11:00 am -> 5.5 (ate 47.3g carbs, 0.5 units insulin)
12:00 pm -> 7.7 (before swimming, 8g carbs, no bolus, removed pump since it can't be worn in the water so now she is getting no insulin)
1:25 pm -> 9.7 (a bit high, 68g carbs - it was a birthday party, 1.6 units insulin)
2:30 pm -> 4.9 (going down, 23g carbs, no insulin)
3:15 pm -> 2.9 (way too low, 35g carbs, no insulin)
5:00 pm -> 7.9 (30g carbs for supper, 1.0 units insulin)
9:30 pm -> 11.0 (too high, 20g carbs before bed, 0.7 units insulin)
11:10 pm -> 12.4 (still too high, 0.4 units insulin)



Sunday, November 15th, 2009

2:00 am -> 6.6 (turned pump off for 1 hour)
8:15 am -> 4.5 (sensor indicated 6.3 before calibration, ate 33g carbs for breakfast, 1.3 units insulin)
9:45 am -> 8.1 (before snack, ate 20g carbs, bolused with 0.8 units insulin)
10:45 am -> 4.5 with one arrow down (not low yet, but she will be soon if she doesn't eat, ate 42g carbs, gave a very small bolus of 0.3 units insulin)
11:45 am -> 4.3 (ate 69g carbs for lunch, 1.5 units insulin)
12:50 pm -> 3.9 (before going over to her friend's house, ate 40g carbs, no insulin)
2:00 pm -> 4.3 (at her friend's house, parents do not understand Type 1 so lows in this case are very dangerous, ate another 23g carbs, no insulin)
2:40 pm -> 4.2 (she's home now, but still seems to be going down, ate 18g carbs, no insulin)
4:30 pm -> 10.7 (now she's too high, we overcorrected to avoid lows, 1.0 units insulin)
5:30 pm -> 14.9 (still going up before supper, ate 55g carbs, 1.7 units insulin)
8:10 pm -> 11.5 (still high, ate 24g carbs, 1.1 units insulin)
9:45 pm -> 14.3 (still too high, 0.8 units insulin)
11:20 pm -> 9.2 (going down)


So 58g of extra carbs on Saturday and 81g of extra carbs on Sunday to treat lows. I don't like that very much, so I've made corrections in Adele's scales which translate into less insulin after lunch and more after supper. So far, these changes seem to be working. But then again, her insulin needs during the week are quite different than on weekends... One day at a time. You can't look too far ahead while playing the Type 1 game.

Love part two

Dear anonymous, thanks for your comment on the last post about LOVING Diabetes. I had the feeling that this post would not agree with everyone and I appreciate your honesty. I've been thinking about this one for a while now trying to make sense of this Type 1 game that we play.

A while back, I decided that I wanted to someday be able to say that I'm a better person because of Diabetes. I had absolutely no idea how and didn't know if I really could, but I decided that I wanted to try my best to turn this negative into a positive. I'm still not there yet and am not sure if I ever will. I've struggled (and still do) so much with this. Like you, I constantly worry about Adele's short term well being as well as her long term prognosis. With this constant stress, sleep and peace of mind are not what they used to be. Our whole life is not what it used to be.

But recently, I've come to realize that when I think about this in a negative way (why us? i just want to sleep? i'm so tired? if only this could just go away?) I am letting Diabetes win. The more negative thoughts and actions that I have, the more I am feeding the negative aspects of Diabetes. After a while these thoughts become me and I turn into a bitter father full of hatred. My attitude towards Diabetes then becomes Adele's as she grows older. Do I want this to be her destiny? I can't control the fact that she has Type 1 and some of it's outcome, but this is one thing that I can control. It is my choice. Thinking about this some more, I realized that the sure and only way to beat this is to love it. By loving what you hate you begin to sow good instead of bad. It is part of Adele and I love her dearly, so I also need to love her Diabetes as well. At first I also thought that this was absurd and not possible, and maybe it isn't, but now I have decided that it is the direction that I want to go in. By embracing Diabetes and feeding the positive as much as I can, I will be drowning the negative. I believe in the importance of venting and talking about how difficult and stressful living with Type 1 often is, but also to not dwell on this too long since it will become me.

I don't expect everyone to agree, but simply wanted to share the idea at the beginning of my journey.

Life isn't only about living for many years. I've come to believe that life is about living fully during whatever time that we have without self-pity, being as happy as possible, making a difference by helping others and enjoying the adventure. If Adele can love herself and her Diabetes enough to live this way, I believe that I will have succeeded as a father. Thanks for reading...

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...