The Type 1 Game

If you don't puke a bit and re-swallow, you're not going hard enough...

2012-01-17T07:00:00.003-04:00

One of my earliest memories of the bike was being totally blown away at how the two wheeled machine stayed upright. At rest, the bike falls over unless something is holding it up. But when moving, it somehow magically stays upright. As a very young kid, I remember this being one of the coolest and amazing things that I had ever seen. Then I learned how to ride and fell madly in love…

I’m not sure if it’s the thrill of the speed along with the g-forces felt during the ride that I enjoy the most. The whole concept of a roller coaster is built on this thrill… But unlike an amusement park ride, a bike ride is free (once you own a bike) and there is no waiting in line. The bicycle, such an efficient machine that enables you to travel long distances with minimal effort compared to all other human-powered means of travel. Looking back, all I remember is that growing up I just couldn’t get enough of it…

After Adele’s Type 1 diagnosis in 2002, the bike became one of my saviors. I was pissed and I channeled a lot of this anger right into the pedals. The more that I realized how complex this whole Type 1 gaming was and how it affected every single aspect of our life, the more I became obsessed with doing what it took to not let it slow me down and the more I needed to ride. The complex trials and tribulations of Type 1 gaming pushed me go harder. I wanted to run (or in my case ride) away from it all. The physical pain of pushing oneself on a bicycle was very good at masking, dulling or burying the deep pain inflicted upon me by Adele’s Type 1 life sentence. In a way I felt guilty for having a much simpler life by not having Diabetes myself as well as having passed on my defective genes which caused Adele’s immune system to go haywire and destroy her ability to produce insulin. The bike became my own personal medieval torture device with which I punish myself regularly.

But after nearly 10 years, the anger and guilt towards the Diabetes diagnosis is beginning to lift and as a result I started questioning myself about the whole bike thing. Why bother? What the hell am I trying to prove? Why do I keep getting back on, chasing I’m not really sure what? Why do I bother lining up at the start line after signing up (and paying) for a sure beating in the local “who the hell really cares” bike race that I most often have absolutely no chance of winning? Why do I keep pushing myself to a point of near annihilation mostly chasing kids less than half my age? I’m an ordinary, average, mid-pack amateur master bike racer spending way more money than I will ever earn from the sport. But, in Adele’s eyes I’m the absolute very best damn cyclist in the universe.

Suddenly, it makes so much sense. It’s not about results or finishing first. It’s about being a role model for Adele by continuously and consciously seeking self-imposed physical suffering and discomfort in order to cultivate growth and forward movement. The bike has taught me so much about discipline, sacrifice, friendship, teamwork, perseverance, dedication, self-confidence and suffering, all character traits necessary to be a successful Type 1 gamer. And to think that this realization came to me when life really makes the most sense… when I'm riding my bike.

See ya on the ski slopes...

2012-01-12T20:43:00.000-04:00

Unlike what most considers to be “normal”, our bodies were not designed to sit at a desk all day. Our bodies where designed to move and to perform physical work. Regular physical activity eventually causes an adaptation which makes us physically stronger, fitter and generally healthier.

Exercise also makes our body more sensitive to insulin. Essentially, it helps the insulin do its job (move glucose from the bloodstream into the cells to provide energy) much more efficiently.

With Type 2 Diabetes, insulin resistance is a big part of the problem, therefore becoming more active is also a big part of the solution. With Type 1 Diabetes, physical exercise is also important. By increasing insulin sensitivity, the Type 1 gamer requires less synthetic injected insulin to control blood glucose levels. Less medication is always better and by decreasing insulin dosages, you also increase the likelihood of getting doses right. Less medicine = smaller mistakes, whereas more medicine = bigger mistakes. A Type 1 gamer can however never eliminate all injected insulin, since unlike Type 2 Diabetics, their bodies have lost the ability to produce their own insulin. Increasing insulin sensitivity is good in that it makes it much easier to avoid high blood sugars. When the Type 1 gamers physical activity level goes up, the injected insulin begins to work much more efficiently in avoiding high blood glucose values which are the cause of long term health problems associated with the disease.

As good as this all seems, there is also one “drawback” to physical exercise for a Type 1 gamer and that is putting them at risk for hypoglycemia (low blood glucose). One of the differences between Type 1 and Type 2 Diabetes is that in “adult-onset” (Type 2) Diabetes, the patient is mostly not susceptible to hypoglycemia (low blood glucose) since the mechanisms in their bodies working to prevent this are still working. Hypoglycemia is a constant and immediate threat for all Type 1 gamers with possible outcomes being unconsciousness or even death if untreated. Hypoglycemia can creep up almost unexpectedly with little signs or symptoms until it’s too late. Playing in the snow and jumping on her trampoline are the activities that drop Adele’s blood glucose the most.

This coming weekend, Adele and I will be spending a day on the ski slopes downhill skiing. Even if the physical effort required is less than cross-country skiing, it still requires a significant level of physical effort that will surely send Adele into hypoglycemia if I don’t back off on her insulin. That is the part of the equation that is 100% certain. Determining exactly how much insulin I need to back off is the tricky part…

Adele’s test kit in my jacket (close to the body to avoid freezing) and some simple, fast-acting sugar are a must during all of our ski runs as well as hourly blood glucose checks to see if the reduced dose of insulin is enough or too much. Then, a few extra blood glucose checks during the night to make sure the delayed insulin sensitivity doesn't make Adele go low up to 24 hours after all the extra exercise. All that work, worry and vigilance to do what most non Type 1 gamers do without even thinking twice… Is it worth it? Imagining Adele’s big smile coming down the hill as I write this… you bet it’s worth it.

2011 in review - the absolute best ride of the year

2011-12-30T11:00:00.000-04:00

The knock on the door at 6 am wasn’t necessary since I was already awake. I was tired but still couldn't sleep even if I seemed to have tossed and turned all night between Adele's 2 or 3 blood sugar checks. Her numbers had been relatively stable throughout the night after a low low (in the 1's - scary) before supper the day before and lots of carb-counting guesstimation. Based on the constant shuffling in the adjacent bunk, I would say that Adele didn’t sleep very much either.

We were pedaling out of Pohénégamook, Québec in 30 minutes so I slipped on my chamois and riding jersey as soon as I got out of bed. Throwing my leg over my bike, I soon realized that it was going to be a chilly start on that late August morning. I appreciated the Belgian knee warmers (or layer of embrocation) that I had just rubbed into my legs. Within about 10 minutes of riding, my gloveless hands were frozen and the thick fog had condensed on my Jawbones. The wool socks were however keeping my toes pretty cozy. My numb fingers stumbled to open the Larabar retrieved from my back pocket. Breakfast on the bike it is again this morning…

Adele was sitting shotgun in the trailing RV with Dr. Ali keeping her company while driving. We needed to cover about 50 kms to the New Brunswick border before the next team of riders took over. Even if my discomfort was making me look forward to the warm comforts of the RV, I recognized a deep feeling of aliveness that made me smile as I pedaled.

The weeks leading up to this year’s Cyclebetes national relay and Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes had me second guessing my involvement… What I mean by this is not questioning if I wanted to ride or not. But rather the cost, complexity and effort of getting everything ready seemed so daunting. I’m very happy that I didn’t act on these feelings since the 2011 ride seemed to be the best yet.

It was the first year that Adele was with me for the trip. She didn’t ride, but she talked about riding in the future. That made it all worthwhile. I hope that her experience helped her to realize “why”. Why I do this, why it’s so important and why this ride is really more than just a ride. Taking the group picture before our Moncton Mike’s Bike Shop 200k ride with Adele and all of my friends and family by my side gives me one of the absolute deepest joys that I have ever experienced in my 43 years of living. There is no drug in existence that even comes close to producing such a high….

Too often I still get caught up in the numbers. Such adventures really throw a stick into the wheels of daily Type 1 management and this trip was in no way different. That week was more about basking in the positive energy generated by our new family of “do something” people who “get it” rather than focusing on the many high and lows. What better way to expose Adele to life’s most powerful force in this world – attitude.

Looking back at the absolute best ride of the past year, I would really like to thank all of our sponsors and everyone else who have supported my efforts. Thanks to my wife who endured my crankiness leading up to the ride as well as the fatigue, sleep deprivation and recovery the week of our return to real life. This also includes the anonymous online donors… In it's 5th year, our 2011 ride has brought our total raised to $46,000 closer to my dream of a cure! From me, Adele and the rest of our family (including our extended Type 1 family), THANK YOU !!

Photos by Don Ricker photography and Jason Brackman

Use only as directed

2011-12-29T11:24:00.000-04:00

Imagine purchasing some over the counter medication or picking up a prescription at your local pharmacy and checking the dosage label on the bottle which reads:

“Dosage determined by trial and error. Try the dosage that you think will work and either raise dose if it is not enough or lower if it is too much.
Warning – Too much of this medication may cause unconsciousness and sudden death if not treated promptly while too little of this medication will cause debilitating long term life-threatening side effects leading to an eventual slow painful death.”

As crazy as this seems, that’s pretty much what Type 1 gamers are faced with. Doing their best, guessing doses of a drug where the difference between the correct amount and too much or too little is very often so small, much less than a single drop. Yes, we do have a trained medical team to support us in this process, but at the end of the day, the Type 1 gamer becomes the final decision maker at determining insulin dosages. There were no doctors or diabetes educators around when we did our 2 am blood glucose check on Christmas morning. Add all of the other mostly uncontrollable variables (like exercise, stress, fatigue, hormonal changes…) and the guessing game of how much insulin is just enough becomes a very, very complex equation. What works one day does not necessarily work the next. Even if you do every single thing right, the result is still a roll of the dice…

Last week has been a roller-coaster of blood sugar values either low (in the 2’s) or high (14+ or even higher) – normal values are between 4 and 7. Entering the pre-pubescent period has not been very good to us. Even after all of these years, every single day is still a battle. Yes, there are some good or better days, but each and every bad day is a brand new war. 365 days a year. No holidays. Every single minute of every single day and night. That’s the Type 1 gamers life…

You’d think that after close to 10 years of experience gained playing this game that we’d have all of the answers and everything under control eh? Most everyone else seems to think that. After all, it’s just Type 1 Diabetes right? Think again…

Time to Wake Up !!!

2011-08-19T02:10:00.000-03:00

Like most people, as soon as I wake up I glance over to the clock to see what time it is. For me, the first reason is not to see if I’m late but rather to see if I need to get up and check Adele’s blood sugar. Sleeping in on the weekends is always tricky and sometimes is just not possible if Adele’s blood sugar is too low and she needs to wake to eat.

Lying in bed after I wake up in the morning while Michele and Adele are still sleeping, I listen and feel a certain sense of relief hearing Adele shuffle in her bed in the adjacent room. It reassures me that she has made it through the night. Hearing her move around is not a guarantee that she is not low (or high), but at least I know that she is alive. Every now and again, I read stories where Type 1 gamers are not so lucky.

After a blood glucose check (and a correction if too high or low), it’s time for breakfast. We usually tell Adele to give herself a “head start” insulin bolus before eating to try to prevent the common post-meal blood glucose spike. I then prepare breakfast. All carbohydrates must be calculated. We use a scale to weigh Adele’s food and multiply by the corresponding carb factor to give us the amount of carbs (in grams) for the portion. Immediately after breakfast, Adele gives herself the remaining insulin based on our calculations. Protein slows down digestion making the influx of sugar into the blood stream more gradual, so we try to add it to every meal when possible. If it is during the week, all of Adele’s snacks and her lunch for the day must be prepared and the carb content calculated. We then write down all of these food items and associated carb content in Adele’s pump journal in order to be able to calculate insulin doses to be administered throughout the day to cover these ingested carbs.

Managing Type 1 Diabetes requires strong math skills. We’re beginning to introduce this to Adele, but she’s still too young to be able to calculate carbs accurately unless the portion consumed is the same as what’s on the nutritional information label. She has started to estimate carb content. This approach is necessary when we’re eating out and don’t have access to her food scale or any nutritional information, but it is not very accurate and can often cause out-of-range blood glucose values. Precise carb counting will not guarantee in range blood glucose levels but it increases the likelihood. In a nutshell, that’s what the Type 1 game is all about, doing as much of what you can at all times to increase the chances of normalized blood glucose levels most of the time.

Adele now has her own cell phone and we (either myself or my wife) communicate with her many times during the day instructing her what to do (insulin doses, extra snacks to correct or prevent lows…) to manage her diabetes.

Even with such vigilance, there are no guarantees. And for the Type 1 gamers that just can’t manage or afford such vigilance… they pretty much don’t even stand a chance…

So what are YOU doing tonight?

2011-08-15T02:53:00.000-03:00

The last thing that I do before going to bed each and every night is check Adele’s blood sugar. She always sleeps through these night time checks. Looking at the result as well as considering the amount of active insulin and prior blood glucose values, I make a decision to either do nothing if the values are “normal” and relatively “stable”, give her an insulin bolus to bring down or prevent a high, reduce basal insulin temporarily to bring up a lower value and/or give her a bit of sugar. She has developed the reflex of eating gummies while sleeping when we put them in her mouth. Adele doesn't wake up if she goes low during the night, which is very, very dangerous.

I also need to “guesstimate” what time she will be getting up the next morning. Her basal insulin settings are set so that she receives more insulin 1 or 2 hours before waking. This is to prevent the “Dawn phenomenon” (tendancy for blood glucose levels to raise in the morning even without eating) and to give her a “head start” insulin-wise before her breakfast to try to avoid a post-meal high. The tricky part of this is that if she sleeps in, the higher insulin basal rate can cause her to go low. On the weekends, I set the higher basal rates later to avoid this. Sometimes it works like a charm, other times it doesn’t. This is not unusual, it’s just part of the game…

I then set the alarm for the nightly blood glucose check usually around 2 am or sooner if I’m not comfortable with waiting that long. I can then go to sleep.

My wife wakes up for nightly check, tells me what Adele’s blood glucose is and based on where she was at the last check before I went to bed and if she has any active bolused insulin, I tell her what to do (either nothing, insulin bolus to correct a high, lower basal rate and/or gummies to bring up a low) and then we go back to sleep…

And this is every single night… Weekends, holidays, birthdays, anniversaries, camping trips, sleep overs... are no different.

Some parents complain about nightly feedings with a new born. Those are only temporary. Nightly Type 1 gaming activities are for life…

Type 1 Diabetes for dummies

2011-08-10T04:17:00.000-03:00

Type 1 or Juvenile Diabetes is not caused by diet or lifestyle. It cannot be prevented. It's an auto-immune disease that occurs when the body's immune system malfunctions and mistakenly destroys the cells that produce insulin.

Juvenile or Type 1 Diabetes usually strikes children and is different from Type 2 in that it can never be controlled by diet and lifestyle alone. Since the insulin producing cells are dead, all Type 1s NEED to inject insulin to stay alive. Insulin cannot be taken orally, it must be injected multiple times per day or continuously via a catheter inserted into the skin attached to an insulin pump. Without injected insulin, the Type 1 diabetic would eventually slip into a coma and die. This was always the outcome before the discovery of insulin.

Injecting synthetic insulin to replace the insulin no longer produced by the pancreas is the easy part of the Type 1 diabetic treatment. Along with the destruction of the insulin producing cells in the pancreas, Type 1 diabetics also lose the very complex ability to maintain normal blood sugar concentration. Every minute of every day, the non-diabetic body is automatically making tiny adjustments using various hormones...etc... to ensure that blood glucose (sugar) values are in check. This is no longer the case in a Type 1 diabetic who has to try to manually maintain these blood glucose values as close to normal as possible. Insulin and food are only part of the blood glucose balance equation. Everything from nervousnous, stress, fatigue, physical activity, viruses...etc... affect blood sugar. This makes the task of normalizing Type 1 blood sugars very difficult if not impossible. Even if you do everything right there will be times when your blood sugar is either too high or too low... And then there are the very scary low lows like this one.

So now, without a healthy pancreas to normalize blood sugar levels, the Type 1 diabetic is at risk whenever these levels are out of range. Even with "good control", blood glucose values are out of the normal range often (daily or even many times during each day). Too low could lead to a seizure or even death. Too high will lead to long term complications such as retinopathy, amputation, kidney failure...

Insulin is by no means a cure. It keeps the Type 1 diabetic alive and has made the disease no longer terminal, but it still is only one piece of the puzzle required to normalize blood glucose.

Out of hiding...

2011-08-09T13:08:00.000-03:00

This blog is not dead. Let’s just say that it has been “hibernating”. My gaming strategy as of late has been acting and reacting and not so much analyzing. I’ve just been taking care of things without analyzing why or why not. I’ve been following the old Nike mantra “Just do it”.

It’s funny, because I can take a break from blogging. I can disappear from this virtual world whenever I choose to and for non-gaming followers, Type 1 Diabetes also goes away whenever I do. For gamers, it’s always there… We still deal with high blood sugars that don’t seem to want to go down even after you do everything right. We still deal with lows that make Adele feel all oozy and we still do multiple blood sugar checks throughout the day and night… every single day… and night.

As we’re getting closer to the 9 year anniversary of Adele’s diagnosis, I seem to be closer to accepting the diagnosis. What other choice do I have? But with this "acceptance" there also seems to be less motivation to keep working towards the search for a cure. I have noticed that for most Type 1 gamers, the energy put into Type 1 awareness and fundraising is inversely proportional to the number of years of Type 1 gaming. I don’t want it to be this way for myself.

In a few weeks, I will again be riding my bike as part of the national Cyclebetes relay to raise awareness and research funds for the Juvenile Diabetes Research Foundation - JDRF. In support of this, my posts will be back to the basics, explaining what Type 1 Diabetes is and what it entails. We need a cure and hopefully my upcoming short and to-the-point posts will help explain why. Stay tuned...

My return back to the living part deux

2011-03-19T15:57:00.000-03:00

Yeah, I know, it's been a while.... Since the last post, I got sick again (another strep and more antibiotics), I was off work for close to 2 more weeks and then we were away on vacation. I'm very fortunate to have been able to go south and escape the Canadian snow for close to 2 weeks, but aside from that it has been quite a rough winter. It would seem that as much as I try to embrace our winters, my body is just not optimized for the task.

I have come to admit that a major part of this physical downfall is simply burnout from Type 1 gaming. Since Adele’s diagnosis in October 2002, I had been fueled by anger and panic, but it seems like this energy source has run out. The passion is still burning, but the flame has become quite dim. I’ve constantly felt a sense of urgency to do all that I can to accelerate the cure that everyone has been talking about for so long and make this whole thing just go away. But these past months, some days I’ve just had enough energy to simply go through the motions. Giving up is not an option and there are no vacations from Type 1 gaming so I must keep pedaling.

As I am beginning to feel better again, I keep asking myself “So, what now?” If I don't change anything, will I find myself again in the same spot in the near future? I'm not sure how to live with less intensity.

Our family vacation to Florida was very, very enjoyable even if it wasn’t a vacation from Type 1 gaming. A backpack full of supplies followed us for the entire 12 days. You have to be ready for anything and everything. Insulin, syringes, infusion sets, test strips, lancets, Dex 4 glucose tablets, spare pump… were part of our mobile pharmacy. Adele’s continuous glucose monitor (CGM) proved very useful to help keep her numbers in check, but we still had lots of ups and downs including a 1.8 (32) blood glucose when we landed in Toronto. Crap! The attendant asked us to leave the plane, but we had to treat this low. Yup, I was resisting playing this game at that point. What is it with flying and lows? We don’t fly enough to be able to figure out a pattern, but it seems that as the altitude drops during the landing so does Adele’s blood sugar.

Attending our local JDRF Research Symposium last week definitely also helped to re-ignite my passion. Even if my hopes of seeing a cure in our lifetime are diminishing the more that I learn about this complex disease, the possibilities that can potentially help Adele live a full life are continuously growing. I have now accepted that the odds are very high that her life expectancy will be shortened by Diabetes. I am however encouraged by the fact that JDRF research is constantly making improvements on treatments until a cure is found. As much as I don’t always feel that pharmaceutical companies have our best interest at heart, I do feel quite the opposite about JDRF researchers.

I came out of the JDRF Research Symposium with a much-needed renewed sense of enthusiasm and confidence. The guest speakers were amazing, especially Chloe Steep (www.connectedinmotion.ca) and Dr. Sanjoy Dutta who talked about the artificial pancreas program. Dr. Sanjoy explained the different generations of the artificial pancreas treatment system starting with a CGM that sends a signal to an insulin pump to turn it off when blood glucose goes low (basically a hypoglycemia minimizer system) to a fully automated closed loop system where an algorithm automatically determines insulin dosages to be delivered by an insulin pump without any human intervention. Even if such a system is relatively close (or much closer than a cure in my opinion), there are still many technological improvements necessary before it becomes an available option such as the need for faster acting insulins and more precise CGM sensors. And then there are the hormones that normally work with insulin to control blood glucose (such as amylin and glucagon) that are mostly ignored in the current conventional Type 1 treatment plan. Even with these improvements, Dr. Sanjoy said that it would still not be possible to create an artificial pancreas that worked as good as a healthy, non-diabetic one. It wouldn’t be a cure, but a better treatment. I say we’ll still take it !!

Cooked but hopefully not burnt...

2011-02-03T15:33:00.000-04:00

It’s 3 am and I’m sitting on the couch with my head tilted forward. I had slept for about 2 hours when I woke up with a splitting headache. Lying horizontally creates just way too much pressure in my completely stuffed sinus cavities. Every single part of my body aches and I dread taking another drink from that glass of water beside me since swallowing is just so damn painful. And the swollen glands on each side of my neck are huge and sooo tender. The doctor diagnosed it as viral so I guess the only thing to do is let it run it’s course.

My body is talking to me. Actually, it's more like a violent scream. And I can’t not listen. I also can’t stop thinking about ‘Diabetes Burnout’. In our 9th year of playing this game, what if I just can’t do this anymore. That isn’t really an option, but when the body stops cooperating with the mind there is no other choice. That scares me.

A few days later, a phone call from the doctor’s office confirms a Strep throat and so ended my nearly 8 year streak without antibiotics. Slowly I begin to feel better and come back to life. I need to put much emphasis on the ‘slowly’. I can’t remember a flu / infection that took so much out of me. Again, is it age or the fact that I'm quite cooked?

So now, a few weeks later, I’m still seeing slow but sure progress. I’m back to work, skiing, playing hockey, going to the gym and riding my bike on the indoor trainer. And I’m also trying to figure out the message that my body has given me. I'm trying to figure out how I can continue to be Adele’s pancreas and not destroy myself in the process. I’ve started with trying to get more sleep. This is not always possible while playing the Type 1 game, but when blood sugar numbers are fairly stable with not much insulin onboard, I’ve been accepting these gifts from the Type 1 gods and hitting the sack early.

Even if my intentions are good, I realize that I’m still resisting this Type 1 life that we’ve been imposed. I know I need to let it go, to accept it for what it is, but I’m really having a hard time doing that… even if it has been over 8 years since Adele’s diagnosis. How long is this going to take? Will it ever happen? Is it even possible?

So now it’s time to get back to basics, to try to start living in the NOW more and more. I know this, but still cannot seem to put it into practice enough. As much as my mind is a useful tool for Type 1 gaming, I must not forget that it is just that, a tool. Like any other tool, I must learn to use it and then put it away, just turn it off. Too often, I am a slave of my thoughts, controlled by the what ifs and waiting for certain things to happen to make me ‘happy’. But the future does not exist. It’s just a bunch of stories that we make up, scenarios, often worse case, that we imagine. The only thing that is real is this precise moment. And that’s the only place where we can be ‘happy’. If I can even conserve even a fraction of the energy that I have been wasting while not being present, I will have made progress. That is the goal.

I really think that my body has been telling me that it needs a break. Type 1 gaming itself is 24/7 with no breaks whatsoever. Add raising awareness, fundraising...etc.. and it's no wonder that it can just become too much. So I guess that it's time for me to go to the back of the pack and sit in the draft for a bit to recover and get ready for the next pull...

My letter to Santa

2010-12-20T01:36:00.000-04:00

Dear Santa,

I know it’s been a very long time since the last time that I’ve written you a letter. I figured that you were quite busy with all of the other letters that you get each year and since I really didn’t want anything specific for Christmas, I thought I’d give you a break and let you concentrate on the other kids.

But this year, I feel the need to write again. It started a few weeks ago when we saw you at the Santa Claus parade. I glanced over to get a glimpse of Adele’s face when she saw you go by. Her beautiful eyes lit up with excitement. Everything was just perfect except for one little thing. For most people this thing often goes un-noticed, but for us it’s always there.

My list is very short. It’s actually only got 1 thing on it. Yeah, I know, most lists that you get have much more than 1 single wish. Hopefully, since mine is so short, I’m hoping that you’ll be able to deliver. It would mean so much to me and our family.

You likely mostly get requests for bikes and video games. Even if those things are cool, it’s not what I really, really want. The other day I came across this beautiful house on the top of a picturesque valley. Most people my age work very, very hard and make a lot of sacrifices each and every day of their whole lives to some day call such a house their home. Even if you were able to give me the keys to such a house and even fill it with all the latest gadgets, luxuries and bikes, it still would really not make me any happier because it’s still not what I really, really want.

Also, if you deliver on my request, I promise that I won’t ask for anything else for at least another 10, 20 years or even for the rest of my life. Promise.

So here it is. Here’s my list.

A cure for Type 1 Diabetes

That’s it.

I know it’s a tall order, but remember that it’s all I’ve really asked for in the last 25ish years and I won’t ask for anything else in the next 10, 20… Promise.

So hopefully the elves will be able to come up with a cure. Please check with JDRF (the Juvenile Diabetes Research Foundation). I’m pretty sure they have some ideas that the elves can use to help them out.

You can leave the cure medicine and the instructions under the tree and if you leave lots, I’ll share it with all of my friends that also need a cure. This would definitely be the most absolute best gift ever !!

Thanks and Merry Christmas Santa !
Mike

PS – We’ll leave you a glass of milk and some gluten-free cookies. I hope you enjoy them. Oh yeah, and a few carrots for the reindeer…

Refocus

2010-12-13T15:50:00.000-04:00

Sitting in a work meeting, my focus begins to wander. New work policies and developments are being communicated and debated, but my mind keeps drifting. No one seems to notice that even though I am physically there, my attention is not. Adele being at school and me at work, I don’t have any physical signs that her blood sugar is okay. I can’t seem to get rid of this uneasiness, but I need to refocus on my meeting...

I keep looking at my watch wondering. Over 2 hours since her breakfast insulin bolus, how much of that insulin is still actively working? I try to do the math in my head. She had dropped significantly in the third hour after breakfast and had gone low the day before, will she do the same today? She was a bit high at 9am when I spoke to her teacher’s aid and I had corrected, but did I over-correct? I am still not convinced, but then again I remind myself that I need to refocus on my meeting…

I had stepped out of the boardroom when Adele’s TA had called at 9am, but mentally I was still in the meeting. I had listened, calculated and told the TA to tell Adele to give herself 0.5 units of insulin. It was a quick decision. It had to be and now I was second guessing myself. What if Adele’s blood sugar is dropping too fast? She doesn’t always recognize her lows. Again, I try to refocus on my meeting…

It’s scary to think of the reality of a Type 1 gamers responsibility of calculating insulin dosages without the medical training of a doctor. And the fact that the repercussions of a mistake could be fatal. I then tell myself to not go there and refocus on my meeting…

The thing with calculating insulin doses is that yes you are using mathematical calculations, but in reality it’s nothing but a slightly educated guess. When someone asks me if Adele’s blood sugar will be good for the next few hours, I can never, ever be absolutely certain that it will even if we do every single thing that we’re supposed to. Especially since the severe insulin reaction last week (http://thetype1game.blogspot.com/2010/12/when-living-is-not-dying.html). Unexplanable highs and lows can and do happen at any time. You just hope that you can catch them in time.

Adele can eat the exact same food, receive the exact same insulin dose and have the same activity level on 2 consecutive days with different blood glucose level results. That’s all part of the Type 1 game. There are just too many uncontrollable variables in the blood glucose balance equation.

I eventually made it through my meeting. Adele’s blood sugar was 8.2 (148) at 10:20 am before her snack. A bit high, but not the low that I was worrying about. After a few days of this pattern, a bit more insulin after breakfast seemed to be what it took to keep her in range, until a few days later when it became too much and she dropped to 2.3 (41) before her morning snack at school.

Adele doesn't deserve to live this life... She didn't choose this. I'm tired and beat. But I can't go there, again I remind myself to refocus.

When living is about... not dying

2010-12-06T11:13:00.000-04:00

Adele was just sitting there asking me why everything felt and looked so weird. She kept trying to explain to me what it felt like to have a blood sugar of 1.3 (23) while my wife and I were shoving juice, Dex and gummies into her mouth. I kept telling Adele to just eat and drink even if deep down I couldn’t stop but think that she was trying to explain to me what dying felt like. I was trying to not throw up, hoping that the ingested sugar would reach her bloodstream before her nervous system decided to shut down and enter unconsciousness. She had only been sleeping about an hour and was dropping fast, 2.5 (45) 10 minutes earlier and 9.0 (162) an hour before that. It’s just not right for a 10 year old to go through something like this. It’s not right for anyone to go through something like this.

How could I have let this happen? A stubborn high that didn’t seem to want to come down (until now), a very light bedtime snack, a new infusion site, a basal set too high, a sudden increased insulin sensitivity, a Continuous Glucose Monitor vacation and a temporary loss of focus are some of the causes that come to mind. We had lost ourselves while decorating the Christmas tree and then while watching a movie. We had enjoyed this special family time together a bit too much. I should have seen this coming, but I didn’t. I just felt like crawling under a rock and dying… I felt like giving up. But I can’t. Like with every other close call, I need to dust myself off, refocus and keep going… for Adele, for our family and for myself. I need to regain the confidence that was lost.

I think it took about 60 grams to rescue her from a certain death. It may have been a little more or a little less? Whatever amount it was, as expected, it turned out to be too much. Two hours later at 1 am she had shot up to 18.2 (328). A very conservative correction brought her down to 14.1 (254) two hours after that at 4 am. I gave her another small correction and set the alarm clock. She had gone down to 9.0 (162) at 5:30 am and woke up at 8:30 am at 6.4 (115). At least it was Sunday and we didn’t have to go to work.

Even if the rest of the weekend was also full of rides on the “glucose rollercoaster”, Adele told me Sunday night that she had an awesome weekend. I guess it’s all in the perspective. Thanks for teaching me so much Ad…

Yesterday I wasn’t sure if I wanted to share this here. It seemed too personal and I was not looking for pity. I just wanted to put it behind us and move on. But then I realized that sharing stories like these are why I started the blog in the first place. This is our life. If it makes even one person realize the seriousness of the disease prompting them to support JDRF in it’s search for a Type 1 Diabetes cure, it’s well worth sharing.

An outreach

2010-11-30T21:01:00.000-04:00

Dear local family of the newly diagnosed 4 year old boy,

I don't know you, but I do know what you're going through right now. A Type 1 Diabetes diagnosis is quite a blow. I remember being totally devastated when Adele was diagnosed. Any diagnosis described with the word "chronic" or followed by the phrase "there is no cure" is something that everyone wishes that they'll never hear. It is a loss that needs to be mourned. It is okay and very normal to feel the way that you do...

Even if your son's life is no longer the same, there will eventually be some good that will come out this hardship. It's very normal if you cannot see this right now, but someday I really hope that you will. He will adapt to the needles and to his new way of life and he will be okay. He will grow up to be much more compassionate and appreciative of the blessings in his life.

Adele was 2.5 years old when she was diagnosed and now over 8 years later, she doesn't even remember what her life was before Diabetes. It's simply part of who she is and in her mind who she has always been. She can play whatever sports that she chooses just like her friends. She runs, plays, dances, rides her bike, skates and really enjoys life. The needles, site changes and blood glucose tests are now just part of what she needs to do, merely a task that needs to be taken care of just like homework, getting dressed in the morning and brushing her teeth. Her friends are very supportive. Like other kids, she's resilient and so is your son.

If someone would have told me 10 years ago what my life would be like today, I would have told them that there is no way that I was capable of managing it all. But today, I am living this life. I am indeed stronger than I ever thought I was. As much as I wish that this Type 1 Diabetes thing would go away tomorrow, it has molded and transformed me in ways that I could never have imagined. Connecting with Type 1 families, getting to know other parents of Type 1 children through my blog as well as support groups continue to help me cope. It doesn't fix anything, but it does make me feel better knowing that we're not alone.

Don't hesitate to reach out and try to take things one step at a time. Diabetes is a very technical disease so give yourself time to continue to learn. I know that there's really not anything that I can tell you right now to make things better, but just hang in there... things will get better and you will get through this.

Please send me an email (velo_mike@hotmail.com) if you want to chat or setup a meeting. Our family would be more than happy to sit and talk.

Sincerely,

Mike

The "Solution" ?

2010-11-24T22:22:00.000-04:00

Is it really possible for a Type 1 Diabetic to have the same blood sugars as a non-diabetic? When Adele was diagnosed, I remember the doctor telling us that there was currently no cure for Type 1 Diabetes, but that it was “controllable”. Today, I would have to disagree. Our experience has been that it’s “manageable” at best. We actually often feel out of control.

Coming back to my initial question, what level of blood glucose control is possible for a Type 1 gamer? Is it really possible for a Type 1 gamer to normalize their blood sugar? These are big claims made by a controversial US doctor by the name of Richard Bernstein.

I'm always reluctant when I hear of miracle cures and treatments that seem to good to be true, but I also don't like to simply sit and not look for something better for Adele. For this reason I just had to order Dr. Bernstein's Diabetes Solution book. He is the first doctor that I've ever heard suggest that Type 1's CAN normalize their blood sugar. He was one of the first to discover the benefits of blood glucose self-monitoring. He was diagnosed with Type 1 Diabetes at the age of 12 years old in 1946 and is still alive and well practicing medicine. His theories are far removed from what we were taught by our Diabetes care team upon diagnosis, but I still need to see what this is all about.

I have only started to read the book, so these are only my initial impressions. This will not be a book review or me trying to persuade you to go buy the book and throw your current gaming plan out the window. The purpose of the post is to share my quest for a "solution" and the importance of sometimes challenging mainstream conventional thinking. Here are a few points that attracted me to Dr. Bernstein’s philosophy:

Dr. Bernstein's Diabetes Solution is based on a very restrictive low-carb diet. Since Type 1 Diabetes is a metabolic disorder where the sufferer cannot properly metabolize carbohydrates, doesn’t it make sense to avoid or restrict the cause of the problem: carbs? With Celiac disease, ingested gluten makes me sick. The treatment for Celiac disease is quite simple and logical, avoid gluten and stay healthy. And I am living proof that this Celiac treatment is highly effective. I feel great. When I adopt a diet that works WITH my body instead of against it, I minimize stress and maximize health. Shouldn’t diabetics also adopt a diet that works WITH their body instead of against it?

For us (and many other Type 1 gamers), low blood sugars often happen a few hours after a big meal. The bigger the insulin bolus to cover that meal, the faster the blood sugar can potentially drop. I know that there are different techniques that try to fix this problem, but how often do they really work like they should? Simple math tells us that by reducing carbs, you reduce the insulin bolus to cover them and also reduce the severity of making a mistake. Being off by 10 or 20% is much greater when dealing with big numbers compared to smaller ones. Again, simple logic that just makes sense.

After over 8 years of Type 1 gaming, there is no doubt in my mind that it is just not possible to be able to eat what you want, when you want and still maintain your blood sugar in range all of the time like in a non-diabetic with the gaming tools that we currently have at our disposal. There are just too many variables. But is low-carbing the solution? It’s a touchy subject. Some just don’t believe it to be a healthy alternative while others simply cannot live without the pleasure of enjoying foods rich in carbohydrates. If it were me, I would definitely give it a try. But on the other hand, if someone told me that if I kept on biking that it would eventually have a negative impact on my health, I’m still not sure I’d be willing to give it up.

Dr. Berstein’s “solution” may or may not also be our “solution”? I don't know, but I do know that I am commited to keep looking.

Incredible things often happen to those who are just too stubborn to stop searching for something better. Dick Hoyt knows this. What would have happened if Dick had listened to the doctors when they told him that his son Rick, who was born with Cerebral Palsy, should be put in an institution since he would never speak or walk and would be a vegetable for the rest of his life? You may have already heard about the story of “Team Hoyt”? If not, I hope that this video inspires you as much as it does me…

Resistance training

2010-11-15T16:21:00.000-04:00

As human beings I’m not sure if our tendency to resist is a defect ingrained in our DNA or something that we learn? For me, resistance is felt as a certain muscle tension with the unconscious belief that I can prevent or undo certain events or circumstances using my own personal muscular strength. Kind of like holding or catching an object to prevent it from falling. My resisting mind sounds like “No, this can’t be happening” or “Why do things like these always happen to me?”. It is also recognizable by a certain tightness in my hamstrings, shoulders and neck.

Events that trigger unpleasant feelings are inevitable in life. Tragedies, death, pain, suffering, disease are all part of living. Even if we put all of our time and energy into resisting such events, it will not undo them. Resistance won’t bring back the deceased, it won’t cure chronic diseases like Type 1 Diabetes and it won’t turn back time to enable us to change certain events that may have been preventable. Constant resistance WILL however eventually make us sick (or sicker) if it persists for too long. And it will prolong or simply delay the unpleasant feelings associated with the event. What we resist persists. Resistance is a defense mechanism that we use to try to avoid (or lessen) the unpleasant feelings that we are experiencing. The worse thing is when all of this resisting happens unconsciously. If we don’t know that we’re resisting, how can we stop? As soon as we start becoming conscious of it, we begin to let go. We begin to surrender to what is. And we begin the healing process.

RESIST NOTHING.

Such powerful words that represent the beginning of the end of unhappiness. I’m trying very hard to burn these 2 words in the main part of my brain. For so long, I resisted playing the Type 1 game every single day. I cursed inside when I got a meter error during middle of the night blood checks. I resented doing site changes when our schedule was already full. I just hated doing blood glucose checks before outings when we were already running late. I got really upset when people just didn’t get it. And I still feel that certain tightness deep inside when I see a high number appear on Adele’s blood glucose meter.

After over 8 years of Type 1 gaming, I can’t say that I no longer resist playing, but it is getting better. I’m more conscious of it now and can more often turn it around as soon as I feel this resistance starting to build. The Type 1 task where this consciousness has helped me the most is during the middle of the night glucose checks. I just get up and do them. No questions asked. And if the voice inside my mind starts cursing about how difficult and unpleasant this whole process is, I just tell change the channel. And usually end up falling asleep much faster afterwards since I’m just taking care of Type 1 game business instead of feeling sorry for myself resisting what is and wishing that I could just sleep through the night like normal parents of a healthy 10 year old. In the end, once we become more conscious of our resistance, it then becomes our choice. Do we want continue to try to fight the powers of the universe or surrender to them?

I think it's time to start letting go and to raise the white flag. Sometimes "giving up" may actually one of the most constructive things that you can do...

World Diabetes Day

2010-11-12T13:55:00.000-04:00

Sunday, November 14th is World Diabetes Day (http://www.worlddiabetesday.org/).

What can you do to recognize this special day?

You can start by wearing blue. You can also tell your co-workers, friends, family and even strangers about World Diabetes Day and how an estimated 285 million people worldwide are affected by Diabetes, 5 to 10% of which is Type 1 Diabetes. You can tell them that every day, 200 children develop Type 1 Diabetes. You can tell them that children who develop Type 1 Diabetes did not do anything to cause it. You can tell them that without insulin that those children would die. You can tell them that Type 1 Diabetes cannot be reversed, outgrown or controlled by diet alone. You can tell them that Type 1 Diabetes is increasing in children at a rate of 3% each year and 5% each year in pre-school children. You can tell them that their children could be diagnosed with Type 1 Diabetes even if there is no family history. You can tell them that insulin is not a cure. You can tell them that even if Type 1 diabetics do everything right that they are in no way guaranteed to not get complications. You can tell them that the greatest fear for the parents of a Type 1 is for their children to not wake up in the morning (http://diabetesnewshound.com/type1/dead-in-bed/). You can tell them that most Type 1s look healthy on the outside, even if they’re not on the inside. You can tell them that we really, really need a cure.

All things equal, I can’t stop thinking how simple our life would be if Type 1 Diabetes went away tomorrow. To be able to eat whatever whenever and not have to think about it would be so liberating. To be able to turn off that never-ending process running in the back of my mind that is constantly calculating carbs, estimating insulin peaks and analyzing Adele’s current and future insulin – sugar balance would be such a huge weight off our shoulders. To be able to finally put an end to that continuous doubt and uneasiness associated with determining insulin dosages would be unbelievable. I cannot think of anything that I would want more that would positively affect our life as much.

If your life is not affected by Type 1 Diabetes, please appreciate this on November 14th and make a commitment to do your part, it doesn’t need to be much, but please do something to help raise awareness and accelerate the Type 1 Diabetes cure.

Is this as good as it gets?

2010-11-07T14:39:00.000-04:00

Summer 2010 is long gone. I’m not sure where it went, but suddenly it was Halloween. The fall season brings cool temps, less daylight, less time on the bike and more time online. Which means that hopefully the blog won’t get neglected as much. Often, I would have time to update, but don’t unless I have something relevant to say. Today, the voice inside my head is inspired, so here goes…

The last few weeks have come with a lot of ups and downs. A Type 1 gaming strategy that had been working quite well for weeks wasn’t cutting it anymore. I can’t explain it. One day would be chasing lows, the next would be full of corrections trying to bring down highs and the next would be both combined. I cannot seem to find a pattern in it all and cannot pinpoint the cause. One day Adele would have Phys. Ed which would cause her blood glucose to drastically drop, the next day, the exact same routine and same foods wouldn’t be enough to bring down a high even after a correction.

We’re already using all of the best technology tools available with the pump, continuous glucose monitor (CGM), latest meters and fast-acting insulin. We can’t really be more vigilant than we already are with 12 or more blood glucose tests per day. Adele is an active child. She swims, dances, played soccer and seems to be constantly running around when she’s home instead of being glued to the TV or her video games, so we’re pretty good in the exercise department.

During periods like these, I always get quite discouraged. What if this is as good as it gets? The doctors keep telling us that we’re doing a great job, but are they missing something? Should we expect more? I have been warned many times that puberty is a difficult time in regards to blood glucose control with all of the raging hormones. Adele is 10 and a half, so this may be the culprit? Or maybe not? The only other controllable variable that I haven’t mentioned above is diet. Our stand on this has been trying to eat as much healthy whole food as possible and allowing the occasional “treat” like we would if she didn’t have Diabetes. I’m really trying to live more in the NOW, but I still can’t help to think about the future. “Is this it? Are we just supposed to accept it as such and ‘hope’ for a delayed onset of eventual complications?” Even with a "good" A1C, her blood sugar is still often out of the normal range. Adele is still my baby. As a parent, I want to do the very best that I can for her. Is there anything else that we can do NOW to help her live as long and healthy as possible?

Diet is very tricky. Restrict too much and it may trigger sneaking food, while adopting a standard North American diet filled with processed carbs would certainly isn’t the answer in my opinion. I have often thought that if it were me who had Type 1 that I would adopt a strict whole food low-carb diet. It just makes so much sense. Highs often happen after a high carb meal or snack and lows often happen when a huge insulin bolus to cover a high carb meal peaks. Small boluses to cover fewer carbs can only reduce these spikes and crashes. Again, it just makes so much sense!!

Talk is indeed cheap and I have a healthy pancreas so who am I to make a statement like this and never have to follow through with it? As an amateur competitive cyclist constantly trying to improve myself, I’ve already tried to limit carbs in the past (the "Zone" diet) to re-train my body to burn fat as fuel instead of relying mostly on carbs and have failed miserably. After a long bike ride, the craving for carbs is so strong that I just end up giving into it. I am very disciplined and yet I still could not follow through. Is it a built-in human flaw that causes so many people (not just Type 1s) to give into the temptation of highly processed carbs? Are we doomed to fail? But then again, why can some people stick with it? Dr. Richard Berstein has proven with his strict Type 1 management plan including restricting carbs that it can indeed be done. He’s over 75 years old with close to 65 years of Type 1 gaming. He not only talks the talk but also walks the walk. How does he do it?

It's easy to judge...

2010-10-27T15:55:00.000-03:00

Please don’t judge our family based on how we choose to play the Type 1 game. Please don’t tell me that 12 or more blood glucose checks during a school weekday is too much. Please don’t tell me that talking with Adele’s teacher’s aid and daycare caregiver 7 or more times per day is unnecessary. Please don’t tell me that getting up to check Adele’s blood glucose at least once every single night is too much. Please don’t tell me that driving to Adele’s friend’s house at 2 am to check her blood glucose during a sleepover is ridiculous. Please don’t tell me that we’re hovering too much and should let go. Please don’t tell me how other gamers don’t test as much and still “seem to be doing great”. Please don’t tell me how easy another gamer finds playing the Type 1 game and how perfect their numbers are. Please don’t minimize what we go through each and every day to keep Adele alive. I’m not looking for pity. I’m just asking you not to judge.

Since Adele’s Type 1 diagnosis 8 years ago, I have been fully committed to do every single thing that I can to be the absolute best replacement pancreas that I can be. Rather than wallow in self-pity, I choose to gain as much knowledge and experience as I can about Type 1 gaming. I choose to become passionate about the gaming process and the cause. I choose to see the glass as half full. I choose to see opportunities instead of obstacles. I choose to be part of the quest for a cure instead of just waiting for it.

Yes, I do realize that Adele will eventually be the one playing the Type 1 game. We believe that this responsibility should be given to her little by little with Adele leading the way, letting us know when she’s ready for more. We push a bit, but not too much. As she does take on more and more responsibility, I will always be there to support and guide her teaching her all that I have learned along the way.

The purpose of this post is not to brag about how good we are at parenting and Type 1 gaming. We struggle and just like other gamers who were unwillingly thrown into this Type 1 ocean, we’re really just doing what we can to stay afloat.

The role of a parent of a Type 1 diabetic child is so much more demanding than that of a “healthy / normal” child, but we must not forget to look at one of the by-products of the Type 1 game suffering which is the depth of the relationship that is created. I honestly believe that I would not have such a close relationship with Adele without Type 1 Diabetes. Choose to embrace playing the Type 1 game instead of resisting it. It’s one of the only things that we can control…

Walking around in our shoes…

2010-10-01T15:11:00.000-03:00

In less than 1 month, on November 1st, we’ll “celebrate” our 9 year Type 1 Diabetes diagnosis anniversary. We’ve come a long way since then. Our life is now an illusion in that it appears normal, but in no way has it become the way it once was. Type 1 Diabetes does not become easier to manage, you just get a bit better at it and a whole lot better at creating the appearance of being normal and having everything under control, but in reality you’re pretty much just winging it playing a game where the rules are constantly changing.

After almost 9 years, I still cannot say that I have fully accepted this diagnosis. I really miss the time before Type 1. I can still remember how it felt to be able to just be…. And I still really miss it. Type 1 Diabetes is a chronic disease for which there is currently no cure. Going through the motions sometimes we tend to forget that. We correct the highs and treat the lows like it’s just a normal part of life. It is for a Type 1 gamer, but it still isn’t “normal”. Adele’s pancreas is broken and no matter how vigilant we are, we will never, ever be able to do as good a job as a healthy pancreas with the treatments available today.

So what are we to do? New treatments also come with new problems. Pumps need to be worn 24/7, infusion sites get banged up, kinked and infected, Continuous Glucose Monitoring systems are often not very accurate at measuring blood. All of these treatment options MAY help Type 1 diabetics who can afford them to achieve better control, but they add a whole level of complexity to their treatment. I realized how much specific knowledge was necessary to play this game when our pediatrician kept asking ME about Type 1 treatment (instead of the other way around). I can understand why certain Type 1 diabetics never evolve beyond injections. Why doesn’t everyone (including non-diabetics) exercise regularly and eat a healthy, balanced diet? Because it takes a whole lot of work and it’s just way more simple and easier not to…

The task of maintaining excellent Type 1 control and care is in reality an inhumane task to ask of someone. 24/7 constant blood glucose levels monitoring including nighttime checks, watching and counting every single bite of food consumed along with the necessary analysis of tons of numbers to make the changes in ratios and scales necessary to deal with the body’s complex chemical changes. All of this every single minute of every day with no vacation… Ever... A higher A1C results in a guilt trip that “we could have done better”. With Type 1 diabetes care, no matter how much you “take care of it”, it really is never good enough and can always be better. Then if or when complications arise, the uninformed lay the blame on the diabetic because he/she “didn’t take good enough care of themselves”. This is the reality that each and every Type 1 diabetic faces.

During our last clinic visit, Adele’s A1C had gone down again and was one of the best to date. Her body has been cooperating, but we’ve also been testing a lot to achieve this… Like 12 and up to 15 times per day. Is this vigilance too much? How long will we be able to keep this up? We could test less, but I’m 100% certain that her A1C will go up and that there will be many more dangerous lows that we may not catch or highs that we’ll struggle to bring down. There really isn’t a definitive answer to this question. In the end you do your best and what you’re comfortable with.

For a long time, I’ve racked my brain wondering if we’re hovering and testing too much, but now I just don’t care anymore. I’m tired of feeling guilty and second-guessing how we choose to play the Type 1 game. We’re doing the best that we can given our circumstances. We’re lucky to be able to be available during the day to work with Adele’s teacher’s aid to maximize her chances of maintaining blood sugar levels as close to normal as possible. To me every avoided out of range blood sugar is an investment in her long-term health even if it means another hole in one of her fingers.

Here are some of this morning’s game highlights:

7:10 am wake-up @ 3.7 (67) – a bit too low, she ate toast with peanut butter, banana and a glass of milk, this is a different breakfast than her usual cereal so I wasn’t too sure about how it would affect her blood sugar, we bolused conservatively with 0.9 units of insulin.

9:00 am between her first and second class @ 9.5 (171) – a bit high, but the rest of the week her sugar would rise a few hours after her breakfast cereal, but then crash so my best option would have been to test again after her 2nd class and see where her sugar was at, but I opted to go with one less test (finger poke) and waited to test again before her am snack.

10:20 am before her snack @ 13.1 (236) – too high = wrong answer, I failed the test. I am absolutely certain that an extra test would have avoided this high.

Tonight we will be inserting a CGM sensor as per Adele’s request. A sensor would have enabled us to see this high before it was too late and also saving her small finger tips from those extra pricks. Some times you win, some times you lose. Even your best isn’t always enough. So goes the Type 1 game….

2010 Cyclebetes Relay

2010-09-10T14:51:00.000-03:00

My 2010 Cyclebetes national relay and community ride adventure has been done for a few weeks already. Lots of planning, anticipation and training resulting in 670 kms (or 402 miles) ridden in 23 hours over 4 days. The effort left me quite wrecked and destroyed actually but we’re $13,000 closer to a Type 1 cure because of my efforts so it’s was well worth it.

What does it take to be part of the Cyclebetes national relay? First and foremost you need a sense of adventure and a willingness to step out of your comfort zone. Up at 5:30 am most mornings, often on the bike an hour later at 6:30. You’re eating, trying to recover, trying to rest, driving, working on bikes, setting up camp and doing multiple other chores mostly the rest of the day. You eventually crash at around 11 pm or later, hopefully in a relatively comfortable bed in the RV (sometimes on the floor) or in a tent. You try to get some sleep because you have to do the same thing the next day. And that’s if you’re part of a team that does not have any longer days where the riding extends into the night.

At the end of your journey, you’re exhausted, but transformed and inspired. You’re so happy to sleep in your own bed and to see your family, but sad to leave your extended Cyclebetes family. Your butt is very pleased to not be perched on a bike saddle and your legs are happy to not have to turn pedals for a while. But you feel this powerful feeling deep inside that you made difference. You were part of a team with a very important goal: to deliver on a promise to cure Type 1 Diabetes. As soon as Adele jumped in my arms when I got home all the pain and fatigue went away and it was all so worth it.

My Cyclebetes relay pull this year was 4 days through Nova Scotia and New Brunswick. Less than half of my mileage was on the tandem (Diabetsy) and the rest was on my own bike in pursuit of my own personal objective of 600 kms in 4 days. I am not a professional athlete, in fact I have a full-time day job, a house and second-hand Type 1 Diabetes. I’m just a regular guy who loves to ride a bicycle and who believes that we always have a choice. We can be the complainer or we can choose to do something. It doesn’t have to be huge, but it’s still something. Quite often these little “somethings” can make all the difference. You just never know… Like during the relay stop at the Pharmasave in Truro, Nova Scotia when a young boy and his mom came up to see us. The young boy was very impressed to see the bikes, especially the tandem. His mom told us that he just loved riding. She also told us that he had just recently been diagnosed with Type 1 Diabetes. I knew exactly how she felt. You could see the pain and suffering in her eyes. Or when we stopped on the side of the road somewhere between Woodstock and Edmundston, New Brunswick, literally in the middle of nowhere quite early on a Tuesday morning, 3 young kids and their grand-mother came running down a driveway with a $20 bill in their hand. They had heard about the relay on TV and just happened to glance out their window when they saw our caravan. Often the little things are what touch us the most…

There are times in life when it’s just gonna hurt… no matter what. So, you better make sure it’s worth it.

Sometimes it is about the bike...

2010-08-11T14:36:00.000-03:00

We’re just back from our vacation in New England. It was a family trip, but I still managed to fit in some quality time on two wheels. Adele got her day at the Coco Keys water theme park, my wife (and Adele) got their shopping day and I got a day to race my bike.

The race course was dry, fast, flowing and had a bit of everything to challenge cyclists of all levels. About 350 riders had made the trip to the Massuchusetts cross-country mountain bike championships on Sunday, August 1st in a small town called Oxford outside of Boston. As I lined up on the start line I had absolutely no idea where I fit in with my competition. It would all be sorted out in a few minutes. The start was quite painful as usual. Eventually my body figured out how to deal with my effort and I settled comfortably in 3rd position in my age group at the end of the 2nd of 4 laps. Not long after that I heard someone come up behind me. As I glanced over my shoulder, I noticed his plate number: 424. He was in my category. We rode together for the next 1.5 laps. I’d distance myself from him in the technical sections but he’d motor back onto my wheel on the road sections. He’d never pass me. He just sucked my wheel. I managed to get away on the loose rocky climb and rode really hard to try to maintain the gap, but he eventually caught back up to me. Having burnt almost all of my matches trying to stay away, he passed me. In my lactic acidic spent state, I just sat up and gave up. I just let him go.

Then, as my head dropped in defeat, I got a quick glimpse of the blue band on my left wrist. The words ‘Cure Diabetes’ are written on this JDRF wrist band that I was proudly wearing, but all that was showing was the word ‘Diabetes’. I then thought of all of Adele’s used needles that I had disposed of that morning (and stabbed myself in the process). I thought of the highs and lows that Adele had endured because of the new “routine” since being on vacation for the last few days and what each and every person living with Type 1 deals with… constantly… each and every day… 24/7… At that point, adrenaline and passion overtook the physical pain that I had been feeling a few seconds earlier. Screw you Diabetes and screw you # 424!! I shifted onto my big ring and started pouring every single watt of power that I had left into the pedals. I caught and passed # 424. As the last few molecules of my last energy gel reached my leg muscles, I dropped into the last section of single track taking the fast but more technical line between 2 huge rocks. I couldn’t make any mistakes. I was cleaning the section faster than all of my other laps. Then, my front wheel suddenly washed out on one of the loose corners. As my foot came out of my pedal and I went off course, # 424 flew by me, stood up and sprinted away. I had lost. As it turned out, we were racing for 4th instead of 3rd (last podium spot) which alleviated the agony of defeat a bit.

As I was cleaning up after the race I realized that even if I didn’t get to step on the podium that day, I still won. I carried on with passion and managed to find inspiration through pain and suffering. I managed to tap deeper into my unlimited energy supply (by the way, you too have one of these). I managed to avoid the temptation to just sit up and coast. I had fully and completely lived despite… I had practiced what I preach to Adele…

My 2010 cycling adventures are still far from done. There’s another very important date that has been circled on my calendar for quite some time now… From Saturday, August 14th to Tuesday, August 17th, I will be riding my bike as part of the Maritimes team in the national Cyclebetes relay to raise funds to find a cure for Juvenile Diabetes. During these 4 days, we will cover 1000 kms biking from Halifax to the Quebec border.

You can help me reach my goal by donating here:
http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&eventID=777&participantID=44614

Stay tuned for updates on my Cyclebetes adventures here on the Type 1 Game…

The business of broken body parts...

2010-07-14T15:43:00.000-03:00

A few weeks ago, Adele started to be very insulin resistant for some reason. I'm still not sure if it was the heat / humidity, fatigue, pre-pubescent hormones, a virus or the fact that she's grown quite a bit in the last few months, but changes made to her basals and meal/snack ratios seem to have brought things back under control. Times like those are scary and they remind us that things can turn bad very, very quick while playing the Type 1 game. We convince ourselves that we're in control but in reality we're not at all. It's like walking on the yellow centre line of a major highway. Even if you're extremely cautious, the risk of getting hit is still very high.

This post has been in draft for a few weeks now (ok, more like a whole month) so the topic is not so recent, but the message is still worth sharing. Last month was the JDRF walk to cure Type 1 Diabetes. The weather was great and I think that it's the year that Adele had the most fun with her friends and family walking and then playing in the inflatable play park. This is our 8th year participating in the walk. You can usually recognize the new Type 1 gamers at the walk. They often have lots of enthusiasm and hope. Being newer to the Type 1 game, maybe they haven't fully accepted the life sentence and see it as a "temporary" condition since we're supposedly very "close to a cure". The veteran gamers participate in the walk as well but they almost seem to have lost a bit of that enthusiasm. Maybe it's truly accepting the Type 1 sentence or it's just that they're so tired from the 24/7 gaming. They may simply be burnt out? I'm not really sure where we're at in this categorization. I truly believe that a cure is possible but also aware that it's not as simple as I once thought it was. Sadly, everyone except for the Type 1 gamers themselves and their loved ones are only interested in a cure for Type 1 if there's still money to be made. It's a business and very sad to be taken advantage of like that, but that's how it is. Diabetes is part of the sickness business where there are lots of people raking in the big bucks. At least with JDRF, I believe that they have the Type 1 gamers best interest at heart and that they're trying to do everything that they can to accelerate a cure. But, on the other hand, too many people simply put the dollar ahead of human wellness.

So, given this realization, do we still talk about a cure with Adele and hope that one day she will be free of this never-ending 24/7 struggle? Yes, we sure do. We don't tell her that someday she WILL be cured, but we tell her that it is our duty as gamers to do as much as we can to help make this happen. We want her to have confidence in the universe instead of being depressed and negative about her state. We talk about what we'd do if or when she's cured. We talk about how we'd celebrate and go on a dream vacation. She knows that it certainly won't happen tomorrow or maybe not even in her lifetime, but she still gets excited about it. Without this dream, all hope is lost. Yeah, we're definitely tired and we now realize that a cure is much more complicated than we once thought it was or that many often make it seem, but damnit we're not giving up, trying our best to enjoy the NOW and taking our responsibility as Type 1 gamers to raise awareness and support JDRF's dedication for a cure.

One thing that I thought of and appreciated at the walk was the feeling of normalacy with testing Adele's blood sugar in public. It feels good to be able to stop and test amongst people who get it. No one looks at you wondering what you're doing and Adele doesn't feel as self-consious since she is now the norm. Feeling understood is a good feeling. Talking to the father of a young Type 1 gamer, he told my wife that his daughter had just started playing soccer. He's at each and every one of her games, but he's really never seen her play. We understood exactly what he meant, but non-gamers may not get it. You see, the entire time that he is standing on the side of the soccer field he is wondering and worrying about her blood sugar level. He's looking at her face for signs of hypoglycemia, he's doing math in his head trying to predict when her insulin is going to peak, he's trying to convince himself that she's okay. I know exactly the feeling since I've also lived it many, many times. Others see a young girl having fun playing soccer while her Diabetes caregiver sees numbers. It's a constant struggle that is difficult to grasp unless you've lived it. People try to understand and be nice by asking how her control is and making assumptions that because we've been doing this for many years now that her "numbers have stabilised". We only wish...

The race for the cure is on...

2010-06-23T15:02:00.000-03:00

1 month since my last post. Geez, that makes me feel very unblogworthy :-( The problem is that every year at this time someone pushes the fast-forward button on my life. Biking season is in full swing, JDRF fund raising including our Cyclebetes ride, days get longer which usually means a later bedtime for Adele and less time for me to blog.

Now, in my defense, all of this time that I spend on my bike is in fact not only beneficial for my mental and physical health but also to accelerate the cure. Even if it appears as a lazy way to update my blog, here's the press release for our Cyclebetes 200 ride as well as the national Cyclebetes relay. Like the past 3 years, I'm really excited about the ride !

You can make a pledge here if you want to support our initiative: http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&eventID=777&participantID=44614

New Brunswick Dad Delivers on a Promise

Dieppe dad and avid cyclist Mike LeBlanc is delivering on a very important promise. “I am delivering a promise to my 10 year old daughter Adele who was diagnosed with type 1 (juvenile) diabetes eight years ago. I will do everything I can to help find a cure. Cyclebetes is an opportunity for me to combine two passions, cycling and supporting juvenile diabetes research. It makes me feel alive. It gives me hope. It represents taking a stand and making a difference. It enables me to meet and interact with positive do-something people. It inspires me to keep pushing. It makes me feel less alone. It empowers me and my family. I want to set an example for Adele I want her to see me throwing every bit of passion and enthusiasm I’ve got towards something so important”.

Mike is a member of the Cyclebetes MaritimeTeam and will be cycling relay style 980 kms from Halifax to the small town of Boundry at the Quebec border. For some of that time he will be riding ‘Di-Betsey’ the Cyclebetes tandem bike that symbolizes that great things are accomplished in ‘tandem’ with others. Mike is also the driving force behind the Cyclebetes 200km event in Moncton, “a lot of local riders have told me it’s the best ride of the year and the event that they most look forward to, so hopefully we can keep it going for a long time. Our ride has raised about $20,000 in 3 years. This year community riders will ride alongside the provincial riders – it’s going to be amazing.” Mike and 9 other members of the Cyclebetes Maritime Team will kick off the first leg of the National Relay on August 14 from Black Rock Beach, Pleasant Point, Halifax the relay culminates in Victoria, BC on September 5, 2010. On August 15th the Maritime Team will be travelling through New Brunswick with a stop at Mike’s Bike Shop in Dieppe where the FUN starts at 8 am with a short 1km family ride and the big 200 km ride to follow.

Details and registration:http://www.mbscycling.org/cyclebetes2010/cyclebetes200.php

Type 1 diabetes affects 246 million people worldwide – most of them are children. “Living with type 1 is like being a fugitive on America's most wanted list. You can never fully relax and be at ease. You're always looking over your shoulder, living with constant apprehension, trying to make predictions as to what ‘diabetes’ next move will be and trying your best to be one step ahead of it. Type 1 diabetes is very unpredictable and sneaky so even the most vigilant eventually get caught. A cure would mean being able to be truly free again. If everyone understood how truly devastating type 1 diabetes is and in even in the smallest of ways supported efforts to help find a cure we'd surely see one in Adele's lifetime. That’s what I’m hoping for... that's my dream”, Mike emphatically adds.

Cyclebetes is the legacy of Team H2V. In 2007 Vancouver design executive Kyle Balagno made a promise to his 12 year old daughter. He vowed would do everything in his power to help find a cure for her type 1 diabetes before she graduated high school. He had 6 years and a very tall order to fill. Together with 4 friends he hatched a plan – do something big that hadn’t been done – they would cycle across Canada relay style in 9 days. The naysayers laughed and shook their heads. The 5 recreational cyclists named themselves Team H2V (Halifax to Vancouver) and began a 6 month training regime. On September 14, 2007 after dipping their tires into the water at Halifax’s Black Rock Beach they were off. Team H2V fuelled by a father’s love and determination and the support of friends faced hurricane winds, torrential rains, sub zero temperatures and the tortuous grade of the Rocky Mountains. Through it all they persevered, one rotation at a time. They did make, but not in the stated 9 days. Team H2V jubilantly arrived in 8! Team H2V raised close to one million dollars for the Juvenile Diabetes Research Foundation (JDRF) and garnered a Guinness World Record. Their indomitable can do spirit and the desire to make a difference is at the heart of Cyclebetes.

Website: http://www.cyclebetes.com/

Mike LeBlanc is available for interviews

Contact:
Cheryl Wilson-Stewart
Cyclebetes Community Awareness Co-ordinator
Email: Cheryl@cyclebetes.com
Telephone: 604.538.7383
Cell: 604.833.3563

CGM buddies

2010-05-20T22:27:00.000-03:00

It's been a while... I usually try to update my blog once a week, but have not been too good in that sense lately. I missed blog week last week as well. So, what's my excuse? No excuses. Basically life and Type 1 gaming. So, it's time to get back on track with a new post...

After supper the other night Adele wanted to remove her Continuous Glucose Monitor (CGM) sensor. It was 5 days old, which means that we could still get another day out of it. And it was working really, really good. The numbers were really close to her meter readings. But it had started to come out after swimming so I had to do a slight "patch job" with an Opsite dressing (thin "sticker" that we use to keep CGM sensors and pump infusion sets from pullling out). This patch job made the skin not breathe very well and it was getting quite itchy. I told her to keep it on since it was working so well. She then told me "You don't know what it's like to have Diabetes and to have this sensor and infusion set stuck to your skin all of the time". Crap, it's so true. I don't know. I don't even have a clue what it's feels like to be in Adele's shoes.

A few hours later, after I finished my bike ride, Adele told me that she had removed her CGM sensor, that she couldn't stand it anymore, it was just too itchy. She felt like she needed to justify that she took the sensor out. When I was tucking her into bed, I told her that I wasn't mad at her because she had removed it and that she was right, I don't have a clue what it's like to have Type 1. Then she challenged me to insert and wear a CGM sensor for 6 days to see what it feels like, to experience that "itchy" feeling. I told her that I would if I could, but that sensors were too expensive to "waste" one. Then it hit me. We had a few expired sensors left from the last box. I told her that next time that she inserted a sensor that I would insert one as well. Mine would not work without a transmitter or a pump to display the numbers, but at least I would somewhat know what it feels like to have a small wire splintered into my skin as well as an Opsite dressing covering it all and holding it in place.

As a bike racer, I remember being frustrated a few years back after repeatedly being beaten by a fellow competitor. He was my age, also had a full-time job, family and no matter how hard I trained, I just couldn't seem to beat him. I told myself that he was just genetically gifted, a freak of nature really and that's why I couldn't keep up with him no matter what I did. I told myself that he just had better genes. But then, a friend told me that the reason why I couldn't beat him wasn't that he was physically stronger than me due to genetics, but rather that he could suffer more than I could. Hmmmm... At first I thought that was absurd, that it couldn't be that simple. "I can suffer with the best of them" is what I thought. But maybe he was right. Maybe I was giving up unconsciously to avoid feeling that extra level of pain and discomfort? Maybe I was losing because I was just too 'soft'?

My first sensor insertion seems to support this 'softness' theory and strongly suggests that I really am a wuss, a coward, a big chicken and a wimp. Looking at that long needle made me want to back out of my commitement, but I knew that once I told Adele that I was going to do it that there was no backing out. I can't deny that I was afraid. I used the skin numbing emla cream. Luckily this wasn't against the rules since Adele also insists on using it for her sensor insertions also. I inserted her sensor and she pushed the button to insert mine. I was trying to be as brave as her, but deep inside I braced myself for the pain. The needle seemed huge (it actually is huge!). Luckily with the numbed skin I didn't really feel a thing during the insertion. It certainly didn't hurt. We secured everything in place with the Opsite dressings. Adele started CGMing and I started pretending to CGM. The next few days, Adele kept asking me how my sensor was holding up and I kept an eye on hers. After 4 days, hers started to give bad readings, we tried to recalibrate to make it work, but with no luck after numerous attempts we decided that Adele could remove it. I wanted to try to keep mine in for the full 6 days, but as soon as Adele removed hers, she also pulled mine off. I guess she wanted to give me the same type of relief that she had just experienced by taking hers off and finally letting the skin breath and begin to heal.

I'm happy to have done this and hopefully it helped make Adele feel supported and that I was at least trying to understand what it's like to be in her shoes. So many times have I wished that I could transfer Diabetes onto myself instead of her. It made me feel a bit closer to her every time I'd notice the sensor just above my belt. I forgot about it many times when I was out and about. I even almost accidentally tore it off while showering, but it was still always there. And it started to itch after a day. I could usually get busy doing something else to help me forget about the itchyness, but I could still feel this thing that didn't really belong and that my body didn't really like being there. The skin even remained itchy and irritated 3 or 4 days after the sensor was removed. It also made me feel bad in that this isn't an experiment for Adele, it's her reality. Yeah, sure we could get her off of the pump / CGM and go back to multiple daily injections, but that option doesn't seem much more appealing. As helpful as all of these new technologies are in regards to Type 1 gaming, they are in NO WAY close to a cure. They keep Type 1 gamers alive... and make pharmaceutical companies richer and richer (sorry, I just had to add that last part).

So now when I see the wheel in front of me pulling away during a bike race when my legs and whole body are screaming in pain, I think of Adele and of all that she must go through each and every day and I suck it up and pedal a little harder. I choose to push deeper into the pain. At least I have that choice...

Now

2010-05-03T13:19:00.000-03:00

I still seem to be going through a certain mourning. After 7 and a half years I should be over it right? That's what people keep telling me. That and it's not cancer. I really appreciate the thought and feel very lucky that it isn't cancer and that we get to keep Adele for now, but it still is Type 1 Diabetes and unless you're a fellow Type 1 gamer or you've lived in our shoes you have no idea what it's like.

Going through the day to day motions of constant monitoring, counting, calculating, bolusing, testing, guesstimating, not sleeping through the night... now seems somewhat normal. We've become very good at making it seem like we have everything under control at all times which is really not the case. Experienced Type 1 gamers are very good at creating the appearance of health and being normal. And no one really wants to hear about it all after a while. They just want to move on. For us, that old news isn't going away anytime soon. It's in our face 24/7.

So, we seem to have the day to day details dailed in for now. What about the future? I've been thinking about Adele's life when she grows up as a Type 1 diabetic. How will she deal with all of this extra day to day Type 1 work on top of everything else that she'll need to do like work, meeting deadlines, career, family...? At 22 years old, she'll already have 20 years of Type 1 Diabetes. Each and every day of Type 1 gaming takes it's toll on the player's health. You have an organ that no longer works, so the game consists of trying your best to do the job that the organ (pancreas) once did. Artificial organ functionality is never as good as the real thing. Each minute that blood sugar is out of range brings us one step closer to complications. Insulin, along with all of the latest available technology, is not a cure, it's life-support.

We have never really sat Adele down and explained to her the possible complications that she may face in her future. But, she's caught on that playing the Type 1 game is not just about needles. She seems to have figured out that it goes beyond that. She really wants a family when she grows up and asked us the other week if having Diabetes could prevent her from having children. Then, as she was testing her blood sugar a few days later she told me that she's sometimes afraid that she won't have any blood left in her fingers and that she won't be able to test. This week she told me she is sometimes afraid that she'll go really low and will die. We reassure her when she has thoughts and questions like these, but she surely still feels our worry. But, she's a kid, so a few minutes later she's already forgotten about the whole thing and is busy thinking about what she'd like to play next. She has presence. She lives in the moment. She lives in the now. Having observed this, I challenged myself to be more like her, to try to live more in the moment. It's strange, but this seemingly simple decision prompted an entire shift in my mood. Instead of my mindset being 10+ years in the future or a few years in the past, I concentrated on NOW. That night, I tested Adele while she was sleeping and her blood glucose was good. I knew that for now she was okay. I took a few minutes to cherish and take in that feeling of okayness. I appreciated the moment. When you think about it, the now is the only thing that is a sure thing. The nature of the Type 1 game makes it very difficult to live in the now since the objective is to look at where the numbers are, have been and then try to predict where they're going. Not exactly living in the moment... But I think that it's still important to be conscious of exactly where we're at and to try to maximize our time in the Now dimension and be more at peace.

So that's my new challenge, to develop a new habit of 'just being' more often... I invite you to give it a try as well... and let me know how it works out.

CGMless gaming

2010-04-27T15:26:00.001-03:00

Adele's last Continuous Glucose Monitoring (CGM) sensor only lasted 3 days. It was inserted into her buttock and she was begging to take it out after 3 days because it was very, very itchy. The skin surrounding the insertion site was very red and inflamed. After trying to convince her to leave it in since it was working well, we gave in and let her take it out. After all, it is her body and she's the one who has to wear this thing 24/7. She doesn't have a choice with the insulin pump infusion site unless we go back to multiple daily injections, but she can go without the CGM. This was last Thursday. We wanted to insert a new one for our busy weekend, but we just couldn't seem to make the time for it. Adele insists on freezing the skin with the emla cream before the insertion (this takes like an hour), then the system needs to be calibrated... Anyway, we were running with our eyes closed, back to making dosage decisions using finger prick results only.

Saturday morning was the first swim of the spring session. Adele now swims from 11 am to noon instead of 10 am to 11 am in the last session. This means less active breakfast insulin on board and her morning snack an hour before getting into the water instead of a light snack right before swimming (yeah, I know that you're not supposed to swim until at least 1 hour after eating, but sometimes she just has to eat something to avoid going low). Swimming is a tricky situation. She's disconnected from her pump since it can't be submerged in water and I'm way up in the grandstands for the entire hour, so I can't ask her how she's feeling. A low is really not something you want to happen when she's swimming in 12 feet of water. I'm watching her like a hawk the whole time even if there's nothing I could do if I noticed that she was having a hard time staying above water except maybe shout at the teacher and/or lifeguard. Her sugar was 5.9 (106) when we got to the pool. 15 grams of carbs with no bolus and she was 7.2 (130) after the session, so we nailed it this time. I was still quite anxious during her class though, continuously trying to convince myself that my decision was correct.

That afternoon was the long-awaited meet and greet with Jason Earle (Jackson from the Hannah Montana show). During the 2 hour wait to see Jason, we tested to find Adele's sugar high at 13.8 (248) 1.5 hours after lunch. This could have been avoided with the CGM. We would have seen the rising sugar and could have corrected before it got this high. We corrected and she came down before supper. She was actually low at 3.6 (65).

The next day, she needed 45 grams of carbs prior to her swimming lesson. Her sugar before was 5.8 (104) and 6.4 (115) after, so again we were lucky to nail it. I figured she needed more insulin for her lunch given that the day before she went high, so I changed her lunch insulin to carb ratio. At 2:15 pm, just before going over to her friends house to play, her sugar was 9.8 (176). A tad high, but since she's going to be at her friend's house, on her own in regards to her Diabetes and without her CGM, I decided to not correct and wait and see in another hour. I called her at 3:30 pm and told her to test. She said that she felt low. She didn't feel it while they were playing on the trampoline (had I known that they were trampolining I would have called sooner!). So, I tried to remain calm and let her test. Her sugar was 2.4 Crap ! The CGM would certainly have caught this. I told her to sit down and drink a juice and take a Dex 4 tablet. This wasn't a problem since her body needed and was craving sugar soooooo badly. After her juice and sugar tablet, she said she still felt low and wanted to eat more. I told her to sit and wait for the sugar to enter her bloodstream and make her feel "normal" again. It's not always easy trying to reason with a 9 year old over the phone when every single cell in her body is litterally starving and in desperate need of fuel. When all was said and done, she had taken in 33 grams of carbs. A bit much, but I knew she was safe from the low. I told her that I would call back in 20 minutes to make sure she was okay. 10minutes later she called. She had tested and told me the result was 4.8 (86). She was good for now, but she would likely be high by supper without a bolus for part of the ingested 33 grams of carbs. I guesstimated 25 grams was enough to treat the low, so I told her to give herself a bolus of 0.3 units for the extra 8 grams. I was lucky in that it was the correct answer, her sugar was 5.0 (90) at 5 pm.

Close calls and constant changes are what playing the Type 1 game is all about... We inserted a new CGM sensor last night. It's been accurate so far and a little less scary to now be running around with our eyes open...

The double edged sword and our latest CGM adventure

2010-04-14T16:08:00.000-03:00

It's been a while. The last 2 weeks have been quite hectic which explains my blog absence. The first week was due to non-Type 1 Game events that got me quite worked up. I apologize if these frustrations came out here. Sorry Alice. The blog is a medium to blow off steam, I just don't want anyone to feel like they're in the line of fire during my outbreaks. Last week was a longish battle with a cold virus. I'm back this week, and feel the need to post, so here we go...

All Type 1 gamers need heros. They need players that they can look up to. They need role models who are thriving despite and even because of their Diabetes. They need someone that makes them feel less alone. They need someone that gives them confidence to believe that they can do ANYTHING that they set their mind to if they're willing to do the necessary Type 1 Game work that goes along with this success. They need individuals like Chris Jarvis, Sebastien Sassville, Jonny White, Phil Southerland (and the other Type 1's on the Team Type 1 professional cycling team), Kris Freeman, Gary Hall, John Chick, Adam Morrison, Chris Dudley, Nicole Johnson, Nick Jonas and George canyon.

Each of the gamers in this list give other Type 1 gamers hope. I mean, they've accomplished so much in their quest for excellence in what they do. They are world class athletes, adventurers and entertainers. Many, many non-gamers have attempted to get as far without as much success. These individuals have gotten there despite (or maybe because of?) their Type 1 Diabetes. How inspiring ! So, what's the problem? Well, as far as being role models, they're really doing too good of a job. In a way, they're making it look too easy. Google any one of them and look at pics. They don't look one bit like they have a serious life-threatening chronic disease. In fact they look amazing! They appear to be healthier than the huge majority of North Americans. Most "normal" people like me would do just about anything to look and be more like them. They are true winners in every sense. And yet, they'd die in a matter of hours without insulin.

So, what's my point? The success stories are worth sharing and like I said will provide much needed inspiration to the gamers facing the same challenges, but we must not forget the seriousness of the disease and it's implications. I find that too often this is overlooked. Most non gamers believe that Diabetes is always reversible and seeing and hearing about these Type 1 game heros really reinforces this misconception because no one sees what they go through to achieve their goals and thrive the way that they do. The silent Type 1 game struggles and suffering side needs to be shared because most people have no clue what it's like to play this game. And until more people realize what it's really, really like, true awareness is not really happening and we're not accelerating the much needed cure as much as we could. Don't be shy, tell someone your story... Share what this game puts you through... Because without this, we're missing the Type 1 awareness boat.

Our 1 year Continuous Glusose Monitoring (CGM) anniversary is coming up in about a month. The sensors seem to be getting more and more precise. This last batch seems to have about a 1 to 2 mmol/Ls (18 to 36 mg/dl) difference with the meter reading. It does however seem to have a harder time with quickly changing values as well as higher highs and lower lows.

When we first started using the CGM, we set the low alarm to warn us if Adele went low. We weren't using the high alarm at first to avoid adding to the too many alarms that seemed to be going off way too often. Then last month, I set the high alarm to 15.0 (270), high enough so that it should only go off in extreme cases. Last night, when my wife woke up to check Adele's blood sugar at 1:30 am, it was at 14.0 (too high), she corrected with 0.7 units of insulin. We went back to sleep. Then at 4:45 am, we were awoken by Adele's pump alarm. It had been screaming for a while now and the whole pump was vibrating by the time that I got to it. Adele was sleeping. I was surprised when I glanced down to see what the problem was. Her CGM was saying that her blood sugar was 16.0 (288) trending upward. I tested with a finger prick and her meter. The result was 15.7 (283). That didn't make any sense. The correction at 1:30 am should have brought her down. She didn't eat anything. Either she is coming down with something or there is a problem with her site. I really hate changing her site on a school morning, even less in the middle of the night! Then, in my half-asleep stupor, I noticed that something was different. Her pump was not wireless, so why wasn't the tubing attached to it anymore? Crap, the tubing broke right where it enters the insulin cartridge. I had no idea how long it had been this way, but it did explain the high (and still rising) blood sugar. She was not getting any insulin at all. I filled and installed a new insulin cartridge and tube and reconnected Adele to her lifeline. I then gave her 1.2 units of insulin to hopefully bring her sugar down before wake time. She woke up at 10 (180), still high, but much better than the 30ish (540ish) number we would have likely seen had the CGM not caught it. Thank you CGM...

Who, why and how?

2010-03-29T16:19:00.000-03:00

As a result of seeming a bit "just ready to blow" in my last post, I felt like clarifying the who, the why and the how of the Type 1 Game blog...

I started this blog in 2008 to share what it really means to live with Type 1 Diabetes. I started it to share what it took to create the appearance of normalcy that most Type 1 gamers tend to project. I started it because there was no way that I could explain a Type 1 gamer's reality in a short conversation to someone who asked or to someone that I was trying to convince to donate and support the JDRF cause. The goal was to use it as a medium to express some of my innermost raw emotions. Hopefully some would relate and others would realize the importance of a much needed cure. I started this blog because I was no longer ashamed of playing this game.

I am not insane, crazy nor clinically depressed. I do however struggle with playing this game some times more than others. Blog posts during these times reflect these feelings. Expressing how I feel and spending some quality time at the gym, on my skis or on my bike enables me to re-establish balance during these hard times. It's a delicate balance, but it seems to be working for the most part.

I've met many, many extraordinary people through my involvement with the Type 1 community and JDRF. I've met lots of fellow gamers since beginning on this journey. I've met some gamers who have suffered a whole lot due to the physical ravages of the Type 1 game as well as others who have been gaming for a very long time without any long term complications. One similarity between those who have dodged problems are that they're constantly looking for better Type 1 game techniques and tools. They are not complacent to "just being" and accepting their fate of eventually becoming another statistic in the modern medicine database of diabetes related complications. They dare to challenge the phrase "It can't be done" or "That's impossible". They have the guts to charter the unknown Type 1 territory and simply ask "Why not?". I am inspired by these people. They give me hope. Like all great people who lived and changed our world before them, they dare to think outside of the box. They've taken their destiny in their own hands and have decided to go above and beyond what "normal" people do just because they've been told to or because they've always done it that way. So one of my goals as a father is to try to teach Adele how to enrich her life this way.

I feel cheated by modern medicine in a way. I feel that they are missing the boat in regards to the role of diet to better control blood glucose levels. I agree that the whole food topic is a delicate issue, especially when dealing with kids. If you restrict them too much, they're much more likely to overindulge once they're older and no longer under your constant supervision. But then on the other hand, they can't (or should I say "shouldn't") eat whatever they want whenever they want in my opinion. I would have liked it if we would have been presented with this reality when Adele was diagnosed and when she started pumping. I am 100% convinced that lower carb, whole food eating makes for more stable blood sugar and better control of Type 1 Diabetes. Why aren't more doctors preaching this? Is it simply an extension of our distorted concept of a "normal diet" in North America?

Those are my values and beliefs, now back to reality. Do I freak out and overreact each and every time Adele's blood sugar is out of range? No, I try my best to remain calm and make the necessary corrections. Do I totally ignore our doc's orders and start inventing my own Type 1 game rules? No, I follow our management plan all the while always looking for alternative tips and tricks. Do we only feed Adele lettuce and raw nuts? No, she eats "normal" (Gluten Free) food like most other kids her age, but we still take the time to discuss best food choices and try to give her enough information to be able to make good choices when she'll be the only one deciding what she puts in her mouth. Do we manage Diabetes or does it manage us? Is Diabetes in control or are we in control? I aim for more of a co-existance built on mutual respect.

Am I expecting too much?

2010-03-25T14:55:00.000-03:00

Just as we were getting a bit too comfortable playing the Type 1 game, the rules have all changed on us again. Looking at Adele's blood sugar values Wednesday evening, I said to myself "Wow, what a good day, the small changes that I had just made to her insulin-to-carb ratios were just right. We can totally do this. And really it ain't so bad."

Here are Wednesday's game highlights:

Wednesday, March 24th, 2010

7:00 am -> 7.1 / 128

9:50 am -> 5.6 / 101

11:50 am -> 5.4 / 97

3:30 pm -> 5.9 / 106

5:25 pm -> 5.9 / 106

8:30 pm -> 7.1 / 128

But then, things suddenly changed. Just like they always do without notice or any logical explanation.

10:00 pm -> 12.1 / 212 (too high, corrected with 0.8u)

Thursday, March 24th, 2010

2:00 am -> 10.3 / 185 (still too high, corrected with 0.2u)

7:00 am -> 14.3 / 257 (still too high, quite aggressive with insulin to correct and cover b'fast, gave 3.0u)

8:55 am -> 18.2 / 328 (still not coming down, gave another 0.5u)

10:10 am -> 7.7 / 139 (that's a bit better before am snack)

11:45 am -> 14.1 / 254 (no luck, too high before lunch)

2:00 pm -> 9.9 / 178 (coming down a bit, but still too high)

Here we go again...

Every single time that I glance down at Adele's blood glucose meter after the last beep when the result appears on the screen and I see a high number, I feel like someone has just shoved a knife right in my chest. All that I can imagine is her every organ being poisoned and attacked by the toxic high glucose blood. Images of her eyes, her kidneys and her limbs being assaulted are all that I can think about at that very moment. How would you feel if someone was physically hurting your child at a particular moment and you suddenly became aware of it? You'd likely become quite enraged (or even just "lose it") and do everything that you could to make that person stop to protect your child. Parents have been known to do pretty crazy things when it comes to protecting their offspring. And this happens to Type 1 gamers on a regular basis. Have I gotten used to it since it happens so often? No, not really. The stabbing pain that I feel at that moment doesn't hurt any less. And it also explains why I sometimes overcorrect Adele's highs by being too aggressive with insulin. At that moment, I'm usually in a state of panic wanting so bad for this Type 1 attacker to stop hurting my princess right away! My reaction is then no longer logical but rather an unconscious survival reflex.

So we're doing all that we're "supposed to". We're being "model" Type 1 gamers in the eyes of our Diabetes care providers, "doing a real good job" apparently and we're still dealing with stuff like this... And following other Type 1 blogs, I realize that we're not the only ones. Why is it that "not dying" is an acceptable Type 1 Diabetes standard in modern medecin? What about living? It may just be me not accepting this whole Type 1 life sentence, but I can't help but think that there's gotta be something better out there for our Type 1 kids...

Is it Spring already?

2010-03-19T12:48:00.000-03:00

We've gone from winter to spring in less than 1 week in our corner of Canada. No complaints. As much as I enjoyed skiing and the other winter activities, it feels so good to be able to bike outside again. Even Adele has been asking to go biking which is usually the other way around. I know that winter isn't over yet and that we'll likely get a few snowstorms before the end of it all but I'll still take the nice weather while it lasts.

We've received the dates for this summer's Diabetes camp. I was really hoping that this would be the first year that Adele would go, but it's not looking so good. Actually, the idea is pretty much dead. I asked if a parent would be able to stay for the first night or if we could go pick Adele up so that she would sleep with us but the camp director said that wasn't possible. The only option is to drop her off and tell her "See you in a week". She really, really doesn't want to go since she rarely (ie NEVER) goes to sleepovers and she doesn't have any current friends at camp. I know that she would love it and make friends once there, but I can't go through the crying and screaming of forcing her to go and just leaving her there against her will. She goes through enough already because of the Type 1 game. Our only chance is one of her babysitters (who is also a Type 1 gamer) who is a camp counselor (or something like that?). If she would be there at the same time as Adele, then maybe (a big MAYBE) she'd be willing to give it a try. If not, we'll try again in 2011. Maybe the whole camp thing is us just being selfish wanting a week off from Type 1 gaming? Who knows?

I have an obsessive personality. My wife reminds me every once in a while and I really have no problem admitting it. I'm not compulsive, just obsessive. It's sometimes about biking, training or whatever else I have going on. Since our last Diabetes clinic apointment, I've become a victim of obsessing about Adele's A1C. For non gamers, the A1C blood test mesures the average blood glucose level for the last 3 months. What I hate about this test is that it's pretty much a setup for failure. It'll never be as good as a non-gamer. The pancreas simply does a way better job at keeping blood sugar in check compared to the human brain. It always seems to be "not good enough" or that it "could be better" or even "let's see if we can lower it even just a tad more?". Lower is supposedly better, but this has to be achieved without too many dangerously low blood sugars. I hate the test, but can't help but get caught up in the whole competition of getting a "good mark". No matter what Adele's A1C is, there is absolutely nothing more I can humanly do to help bring it down... Or maybe I should rephrase that and say that there is nothing more that I can do and still maintain sanity. See, that's where the guilt comes into play, because you can always ask yourself if you could do more. I really don't want Adele to get caught up in that guilt game... It sucks and absolutely nothing good comes out of it. The psychological aspect of the Type 1 game is often overlooked, but is still a very, very big part of it... and sadly most often this suffering is not apparent from the outside.

So, back to my A1C obsession, Adele's result had gone down a bit since the last one, but still not enough to meet the goal in my obsessive mind. Our doc suggested that she's now old enough to aim for a lower blood glucose at night. Lower numbers throughout the night should be the single change that will have the biggest bang for our buck in regards to lowering her A1C. Food intake and insulin boluses to cover them during the day make it much more difficult to maintain a flat blood glucose variation line compared to basal insulin only during the night. We already wake up every night to check, so we should be able to catch lows. Nights when we're using the Continuous Glucose Monitor (CGM) gives us an extra layer of security given the alarm that goes off when her blood sugar drops too low. We're now aiming for the 6 to 7 (108 to 126) range instead of 8 to 9 (144 to 162). The funny thing about this is that we aim for 6 or 7, but most often we're not there when she (or I) go to bed.

One of the things that I hate about tightly controlled blood sugars is the extra snacks that need to be given more often to avoid lows. I hate "force feeding" like that. We try to teach Adele to not overeat and listen to her body, but then other times, like tonight when we decided to go for an unplanned bike ride, she NEEDS to eat something before heading out to avoid going low. Sometimes I just wish we could... just go for a bike ride without obsessing about the numbers !

The highs and lows of skiing

2010-03-08T14:09:00.001-04:00

Sleep. If there is one thing aside from a cure that I could change in the Type 1 games rules, it would be that "real" sleep would be allowed. Being able to just go to sleep, uninterrupted with peace of mind would be the the first ammendement that I would make... if only it worked this way...

For non-gamers out there, a popular analogy of what night time is like for a Type 1 gamer is the nighttime feedings that you go through with a young baby that persist beyond the baby years. I like to compare it to those nights when you're caring for a child sick with the flu. Times when you're planning to go to bed and you notice that your child is burning up. The last Tylenol dose isn't working anymore. You give some more but can't sleep until the fever goes down a bit. After all, such a high fever like this is dangerous and needs to be watched closely. You're worried that the symptoms will get worse and that the fever medication will be enough to keep the temperature down. If it does get worse, you know that it surely means a trip to the emergency room. You finally fall asleep exhausted, but quite uneasy because of the uncertainty in not knowing how your child's body will react to this flu virus and medication. You end up waking up a few hours later in a panic and can't get back to sleep without checking on the child to see if the fever has broken. You wake up the next morning very tired and go through the motions of starting your day...

I remember feeling an overwhelming relief when Adele would get over a flu like this before we started playing the Type 1 game. "She's finally over it, we can finally stop worrying and get some much needed quality sleep tonight" is what I'd say. Type 1 gamers never get this relief. They never experience this closure. They never get to move on. Type 1 players never get over their Diabetes. It's chronic. Life is spent walking on thin ice and you never know if or when you're going to fall through...

Adele has been asking to go snowboarding for a long while now. This desire of hers gained momentum during the Olympic games. An opportunity came up last Saturday so we headed out to our local ski hill. Adele opted for skis but I gave the snowboard a try. Adele had never skied and I had never snowboarded. As the saying goes "Snow = Low", so we were anticipating less insulin and extra snacks to keep low blood sugar at bay. Adele was high before lunch (12.0 or 216). Since we were still home and had a 1.5 hour drive to the hill, I gave her full lunch bolus. I wanted to bring her sugar down and we'd have a snack before heading out to the ski lift. We tested again when we arrived at the hill and her sugar was even higher (18.0 or 324). Crap ! Was it the excitement? Was it a bad pump site? Who knows? I gave her 1.0 units of insulin and no snack and we proceeded to burning off this excess sugar on the ski hill. Two hours later she had gone down to 8.3 (149) and was hungry so she ate a Fruit to Go bar and gave herself 0.4 units of insulin. At 5:45 pm her sugar had slowly dropped to a very good 6.5 (117). The Type 1 gods were finally cooperating. We ate, bolused and got another hour in out on the hill. We tested just before leaving for home at 7:30 pm and her blood glucose was 17.2 (310). Crap ! I guess skiing doesn't affect her blood sugar as much as other winter outdoor activities? Maybe "Snow <> Low"?

We got home late at around 9 pm. Adele's sugar was coming down (9.0 or 162). She ate a small bedtime snack - some crackers and fruit. We didn't bolus and she went to bed. At 10 pm she had dropped to 3.6 (65). We had never experienced a delayed sensitivity to insulin like this before. Her sugar was dropping and we were having a hard time getting it back up. About 60 to 70g of carbs later, 2 hours pump suspended and 5 or 6 blood glucose checks through the night with a lowest low of 1.9 (34), she pretty much slept through the whole thing (she barely remembers drinking the juice just before midnight). She woke up at 8:15 am the next morning at 6.5 (117) and I threw myself out of bed and started going through the motions of the day...

Bittersweet

2010-03-02T11:54:00.000-04:00

I had been bitter about Diabetes in the past few weeks. My friends will be leaving in about a month for a cycling vacation in Virginia. Over a week of just biking, eating and sleeping. My idea of a "perfect" personal vacation. I missed it last year, but our family vacation to Florida during March break with a bike ride every day before or after visiting the parks made up for it. Again this year, I won't be going on that Virginia cycling vacation. The reason is not money (it would be a very cheap trip) or being able to take time off work. The reason is Adele's Diabetes. Adele is just not independant enough for me to be away for that long.

Adele was diagnosed with Celiac disease and Type 1 Diabetes a few months apart when she was 2 years old. My wife naturally took the lead on the gluten-free diet by researching what she could and could not eat. I on the other hand was better with numbers given my education and work experience and I naturally took the lead on the Diabetes management. I make all of the changes in Adele's insulin pump basal rates and snack and meal time carb ratios. My wife applies the math based on the this plan. Adele's control is not perfect, but we seem to need to make many small adjustments quite often to help try to keep things in check.

I felt guilty that I wanted and needed a vacation from playing the Type 1 game since Adele can NEVER take a vacation from it, but I still felt bitterness and self-pity because of my situation.

I usually have a hard time watching any type of sporting event whenever Adele is around. She always wants to watch her "programs" on the Disney channel. But with the Olympics the past 2 weeks this was not the case. She was very, very interested. She was asking to watch every single night. She was asking all types of questions in regards to the games and I was taking advantage of this by explaining the various sports as well as what it takes to make it to that level (not that I personally know what it takes, but rather what I think). The very structured life of an athlete training for the Olympics is not very different than that of a Type 1 gamer. The athlete follows a strict schedule of sleep, healthy eating, intense training and sacrifice often including giving up the care-free adolescent years to follow your dream. I try to explain this to Adele because in essence it's very similar to playing the Type 1 game. All of these characteristics are what make a successful Type 1 gamer.

Last weekend, Adele and her mom went to Halifax with friends for a mini March break vacation. I didn't go since I had to work on Monday. On Sunday night, after the Canada versus USA men's hockey final for the gold medal, Adele called me. She wanted to tell me all that they had done during their first day in Halifax - swimming, shopping and gluten-free pizza supper. And she also wanted to talk about Canada's overtime win in the men's hockey final. She knew that I would have watched it and wanted to recognize the hard work and the "never give up" attitude that the players had to come up with the overtime win. That's when I realized that my "talks" were not lost and that what I have been preaching is really sinking in. Yes, as a Type 1 parent I am forced to never be far from her to keep her safe, but the result of this is a huge opportunity in helping her become the best that she can be. Type 1 Diabetes has prompted me to develop a closer relationship with her than if it wasn't part of our life. Adele told me that she is going to go to the Olympics when she grows up. She is going to compete in swimming. That made me feel really proud. Not because it's my dream that she actually does make it to the Olympics, but rather the fact that she has the confidence to believe that she CAN.

My cycling vacation to Virginia will have to wait for now, I'm still too busy shaping Adele's future... And to other Type 1 parents out there, your Type 1 kids ARE listening and all of the hard work that you're doing is WORTH it !

Type 1 gamer Kris Freeman

2010-02-22T16:01:00.000-04:00

Millions and millions have been tuning into that thing in Vancouver - the 2010 Winter Olympics. To me the Olympics represent the essence of what living really is. By living I don't mean existing, I mean really, really living life. The Olympics represent setting a goal and working towards achieving it. The basis of moving forward. It's not only about cheering for your own country, but recognizing the efforts of each and every athlete towards their quest at becoming the absolute best that they can be. As human beings we're all born with this thing called potential. Olympic Gold medalists are born each and every day. Only a few of these will develop these skills and capabilities. The others won't. It's far too easy to take the "comfortable" route. I am always moved by those who make the decision to leave this "comfort" zone and dare to tap into this potential. It's often a dark and scary place with many unknown obstacles. Not everyone has the guts to go there.

US nordic skier Kris Freeman does. After having been diagnosed with Type 1 Diabetes and being told by his doctors that his skiing career was over, he refused to listen. This was just another obstacle in his path that he would learn to overcome. No one had really ever done what he is doing, nordic skiing at the world class level while playing the Type 1 game.

On Saturday, February 20th, during the 30k pursuit XC ski event at the 2010 Olympics he had done everything that he could to prepare for the race including attempting to make the proper insulin adjustments for the effort. He usually nails his basal insulin and carb intake during races. It's a tricky formula. Aside from training, rest, recovery, choosing the proper ski and wax, Kris also needs to "dail in" his insulin / carb intake. And in order to perform at a World class level, blood sugar levels need to be "dead on" - too low and his muscles don't have enough fuel to function whereas too high and his muscles can't produce maximum power output or rid lactic acid. In order to win, he HAS to get it right. Easier said than done when you're playing such an unpredictable game where most of the time you're really just "winging it". There are absolutely NO guarantees.

The dosage used was the same as what he had successfully used in a past race not too long ago. That's the best that he could do - base his decision on experience and "hope for the best" really. Everything was going well in the first 3rd of the race when suddenly it wasn't... His blood sugar dropped and he could no longer continue. Laying on the side of the trail, asking for much needed sugar until a german coach gave him fast acting glucose. His race was over. Gone in an instant.

Then Kris did what playing the Type 1 game has forced him to do many times before. As soon as the fast-acting sugar kicked in and brought his blood glucose level back up to a "normal" level he got back up and finished his race... in 45th place. Not exactly the result that he had hoped for... but far more impressive than the non-Type 1 gamers that finished on the podium that day.

If there's one thing that I can hope for Adele's future is that she will dare to live like Kris... Then I'll know that she will be okay.

How little did I know...

2010-02-15T11:38:00.000-04:00

31 years old. That's how old I was when Adele was born. With a normal pregnancy and no history of Type 1 Diabetes in our families and healthy living habits we saw no reasons whatsoever to worry that Adele would not always be the healthy bouncing baby girl that she was the day she was born. My only knowledge of Diabetes was very general (and full of misconceptions). I knew that it had something to do with sugar (ie not being able to eat any?) and injecting insulin in certain cases. I had a childhood friend's brother who was diagnosed at around 8 years old, but the whole disease and it's treatment was very vague to me.

That all changed on October 31st, 2002. No known family history of Diabetes (either Type 1 or Type 2) wasn't enough to stop what was happening. Adele's immune system started attacking and destroying the cells in her pancreas that produce insulin. There was nothing anyone could do to stop it. Type 1 Diabetes did not care if we had "healthy living habits" including regular exercise, that we didn't smoke or ate a "healthy" diet. It didn't care if we were in better condition physically than most North Americans. Adele was diagnosed as a baby at 2.5 years old. I know Type 1 gamers who were diagnosed younger, others diagnosed as pre-teens, teens as well as adults. No one is immune to Type 1 Diabetes. It can hit anyone at any time no matter how healthy, fit and thin you are.

One thing that I have learned since we were forced into playing this Type 1 game is that there are lots of diseases, some curable, some chronic, some fatal that normal people get diagnosed with each and every single day. These people are not different from you and I. Like these diseases, Type 1 Diabetes doesn't only happen to "other people".

For the longest time I was ashamed to tell people that Adele had Type 1 Diabetes. The many Diabetes misconceptions that had been carved in my head affected how I perceived others would judge us and Adele in regards to her Diabetes. I worried about what others would think. I felt like I had flawed her since one of my auto-immunity genes was certainly unknowingly passed onto her and quite possibly played a role in her getting Type 1 Diabetes. I was afraid that she would be ridiculed or excluded because of her condition. I was afraid that she would be judged given the stigma that people get Diabetes because they ate too much sugar and didn't exercise enough. I felt stupid not telling people who didn't already know, but I also felt stupid simply adding "by the way, Adele has Type 1 Diabetes" during an unrelated conversation.

It took some time, but these feelings eventually started to go away. As Type 1 gamers, it is our duty to create Type 1 awareness and education. Getting involved is part of the healing process. So don't just sit there, get out there and tell someone about Type 1 Diabetes !

Oh yeah, in case you've been asleep for the past while, the 2010 winter Olympic games are happening in Vancouver. It's the first time that Adele has an interest in the games and actually asks to watch it with me. Go Canada !!!

I should just let it go... but...

2010-02-10T21:06:00.000-04:00

There has been lots of talk and blogging about the Oprah Diabetes episode. Here is a very thorough list of blog posts about the show: http://www.d-mom.com/type-1-tuesday-oprah/ on the D-Mom blog.

Adele overheard me discussing the show with my wife the other day and asked why I now "hated" Oprah (not that I liked her before, but I didn't "hate" her either). Whenever we're discussing anything at all and she is around, she always tries to eavesdrop (serious discussions can only happen after she's asleep). I explained to her that Oprah had dedicated an entire show on Diabetes but hadn't spent enough time differenciating Type 1 and Type 2. I told her that Dr. Oz had really just reinforced the misconception that all Diabetes are the same, that it can be reversed and that it's basically the sufferers own fault. We had had a similar conversation with Adele before trying to explain the differences between Type 1 and Type 2 after she had heard comments about Diabetes (Type 2) on TV. It is very, very important for me that Adele knows that it's not her fault whatsoever that she has diabetes. Kids hear things and often interpret them in a bad way when they don't fully understand the circumstances or what's being said. I do not want Adele to internalize that she caused her Type 1 Diabetes by not always eating healthy food or that she could have somehow prevented it. She's insecure enough as it is without hearing all of these general Diabetes comments and stories which are really meant for Type 2 and not Type 1. But she is 9, and when she hears the word "Diabetes", she listens carefully to what is being said since the big D is such a big part of her life.

Misconceptions about the Type 1 game are so common and a constant source of frustration for Type 1 gamers. How many times have I been told by non-gamers that they know what it's like to live with Diabetes because their elderly father or their dad's aunt or their grand-mother have it as well. Then I ask if it's Type 1 or Type 2 and they look at me and say "Is there more than one type?" I then ask a few questions like when they were diagnosed, if they're on insulin and 99.9% of the time it's Type 2. Then I try to explain that it's not the same. How many times have I tried to explain that Adele's diabetes is not "real bad" because she's on insulin or because gets tested over 10 times each and every day? Adele is at an age where we can't always "protect her" from these confusing general Diabetes comments and messages. She's like a sponge carefully absorbing all of this information. She's old enough to understand part of what's being said, but too young to make the difference between what's true and what's not in her case.

This is the psychological part of the complex Type 1 game that we play. Who said it was just about blood, counting carbs and needles?

Dear Oprah and Dr. Oz

2010-02-04T14:12:00.000-04:00

So Oprah decides to dedicate an entire show on Diabetes. Here are the headlines that she had on her website:

Dr. Oz's Emergency Wake-Up Call: Millions of Americans have it now—by the time you feel symptoms, the damage is done. Dr. Oz reveals how you can stop America's silent killer: diabetes. http://www.oprah.com/showinfo/Americas-Silent-Killer

So what's so wrong with this?

Two and a half years old. A baby. That's how old Adele was when she was diagnosed with Type 1 Diabetes. She did not get Diabetes because of any bad lifestyle habits. She did not get Diabetes because she ate too much candy or drank too much pop. She did not get Diabetes because she didn't get enough exercise. She was a baby for god's sake! She ate a normal diet according to the Canadian Food Guide, pretty much the same thing as every other baby living in North America who did not get Diabetes. Her Diabetes could not have been prevented. She got Diabetes because of a faulty immune system that mistakenly destroyed the cells in her pancreas that produce insulin. It's not any different than the child who gets cancer. Like cancer, Type 1 Diabetes IS NOT PREVENTABLE. Like cancer, we don't really know why some people get Type 1 Diabetes but others don't. Type 1 Diabetes cannot be cured. Type 1 Diabetes cannot be controlled by diet alone. Type 1 Diabetes cannot be reversed. And Type 1 Diabetics need to inject insulin to stay alive.

All you needed to do was spend more time explaining this difference between Type 1 and Type 2 instead of using the general term "Diabetes and being part of those who reinforce the misconception that "all diabetes are the same". It's difficult enough to raise funds for Type 1 Diabetes research in our current economy when soliciting people who understand the Type 1 vs. Type 2 difference and nearly impossible soliciting misinformed people who think that Adele's Diabetes is our own fault.

The next chapter...

2010-02-04T02:34:00.000-04:00

I've been freaking out, having anxiety attacks and episodes of panic. I try to breath deeply and relax when I feel it coming. It happens ever so often whenever I see a bunch of teenagers. Yup, that's the trigger. I become anxious because this is what is just around the corner for us. I'm noticing that things are starting to change already. Adele is starting to want to only wear certain brands of clothing, she makes up her own outfits to wear to school, she'd like to wear bigger earrings (like in the picture) but we don't let her except for a few pics of her "modelling" them at home. Yes, Adele is only 9 and I shouldn't rush things too much, but if I look back at how fast the last 10 years have gone by, well you know what I mean... Shouldn't I be doing something more to get ready for this? Or is it just best to not think about it and let it happen... and then see what happens?

As difficult as it is to be gaming right now, technically we have it quite good. At 9 years old, we still have pretty much 100% control over what Adele does, eats and the insulin that she receives (she's socially immature for her almost 10 years of living because of her Diabetes). She's old enough to understand most of the Type 1 game rules, but we're the ones making the decisions. We're pretty much 100% in control of her diabetes at the moment. It's by no means easy, but we've become comfortable with it for the most part. It is now our normal.

But this is about to change sooner than we think. Adele will want and need to become more and more independant in life as well as in her Type 1 care. Will she be able to make the right decisions? Will she love herself enough to continue to take care of her Diabetes? Adolescence is a tough time for everyone, now add the Type 1 game into the mix and you've got potential for disaster.

What can we do to motivate her to continue to take her Diabetes seriously? What can we do to encourage accountability? How can we maximize the chances of her becoming a "responsible nerd"? Will we be ready for this new chapter?

D-Mom blog

2010-02-01T08:35:00.000-04:00

Leighann Calentine is the author of a very, very informative Diabetes blog called the "D-Mom Blog". Her daughter was diagnosed with Type 1 Diabetes in 2008 just before her 4th birthday. Her blog contains tons of useful information for parents of children with Type 1.

Leighann was kind enough to feature me and The Type 1 game on her site as part of her "featured D-mom" Monday post. Thank you Leighann !

http://www.d-mom.com/d-dad-mike/

Also be sure to visit other areas of her very informative site. It's well worth it !

It ain't just a "day game" ya know

2010-01-27T21:54:00.000-04:00

As the alarm clock went off at 6:30 yesterday morning, my whole body felt trashed and really wanted and needed to sleep. I had ridden the bike for 1.5 hours the night before and had just crashed as soon as my head hit the pillow. My wife had gotten up at around 1:30 am to check Adele's sugar. This always wakes me up. She tells me where Adele's blood sugar is at. Since I'm the one tasked with doing the last check at night before I go to bed she consults with me to see if we need to give Adele insulin to correct a rising blood sugar or if she needs to eat to avoid or correct a low. She was 5.1 (92) coming down from 6.9 (124) when I went to bed. I told my wife to set a temp basal on Adele's pump stopping her basal insulin delivery for 1 hour (the pump automatically starts injecting insulin again after the hour has expired). My wife then asked me if she should also eat a bit and I said no. I was very tired and just wanted to sleep. She should be okay. But then in my tired, half-asleep stupor, I started second-guessing myself. Will no basal for 1 hour be enough to avoid going low? She doesn't have her Continuous Glucose Monitor (CGM) on so there are no alarms that will go off if she does go low.

The next thing that I remember is the alarm going off again. It was morning. The absolute first thing that came to my mind was Adele's blood sugar. Was she low? Was the diminished amount of insulin at 1:30 am enough to have avoided her to go low? Her basal is much higher prior to waking up to avoid the typical morning blood glucose rise (dawn phenomenon), if she was already lowish, was she now dangerously low? I listened, but couldn't hear her moving around in her bed. Half asleep, I found myself doing lots of math in my mind trying to convince myself that she was okay. My brain was telling me to get up and test, but my body was just laying there motionless. I was awake, but really still mostly asleep. After hitting the snooze button a few times I finally threw myself out of bed and headed directly to Adele's bedroom to check her blood sugar. She was 7.4 (133). My guesstimate last night was good...

For any non-gamers out there, you might think that this is an isolated incident. You may think that it's one of those nights that every parent goes through every once in a while like when their child is not feeling well with the flu and/or fever. For a Type 1 gamer, this is our reality pretty much each and every night.

How long will it take?

2010-01-23T22:54:00.000-04:00

Almost 7 years and 3 months - that's how long we've been playing this game. We've learned alot since we started. We've adapted. We've surprised ourselves by learning how to give insulin injections using a syringe. We've learned how to prick a finger to measure blood glucose. We've learned and understand how to use an insulin pump. I'm still learning how to get the maximum benefit from using a Continuous Glucose Monitor (CGM). We've recently learned that cold (an icepack) applied to a freshly removed pump infusion site really helps alleviate itching. We've learned that old pump infusion sites can get infected if they're itched too much (Adele's thigh is much better now thanks to the oral anti-biotics). And I've learned how to make basal insulin and meal carb ratio changes without the help of the diabetes clinic nurse or doctor.

As much as the above list is long and that things like getting up multiple times some nights to check Adele's blood sugar seem a bit easier than they did in the past, I still haven't accepted Adele's diagnosis. I'm not as bitter as I once was. I don't get as upset with non-Type 1 gamers who simply don't "get it". It's much easier to go through the motions than when we started playing, but I still can't fully accept Adele's life sentence. I think about it alot, I mean I have to whenever she is in my care. The other day she just looked at me with her big eyes and I just found her so beautiful, the most beautiful 9 year old ever, she was perfect, she was daddy's little princess... with a serious chronic disease called Type 1 Diabetes. It just kills me.

Thanks for listening...

What If part deux...

2010-01-23T15:19:00.000-04:00

Wendy had a good point in her comment on the last post. Her exact words were "Maybe people with diabetes feel like life is too short not to enjoy the foods you like the most". I'm sure that for some this is true. Do you eat to live or live to eat? Yeah, I enjoy a good meal, but I also thrive on being fit, healthy and feeling good. The latter always wins over the former for me, so I guess I eat to live.

Check this blog: http://michellestype1diabetes.blogspot.com/. The choice of food that Type 1 gamers put in their mouth may have a greater effect on control than we're made to believe...

What if ?

2010-01-20T10:59:00.000-04:00

When Adele first got diagnosed with Celiac disease in the summer of 2002 we had never even heard of the condition. The doctor told us that it could not be cured and that there was no medication that could be taken to control it. The treatment was quite simple - a gluten-free diet for life and her bowel would heal and she would be back to "normal". Food is the medicine.

A few months later came the Type 1 diagnosis. The treatment in this second round of chronic auto-immune disease diagnoses was a bit more complex - she'd need to inject insulin for the rest of her life (little did we know then that this was actually the "easiest" part) all the while trying to balance food intake and exercise with this injected insulin in presence of other uncontrollable processes that can and will throw off this delicate balance at any given time. I remember the doctor telling us that her immune system was mistakenly destroying the cells that produce insulin, but that she could still basically eat whatever she wants as long as she gets synthetic insulin injected to cover the carbs (thus replacing the insulin that her body no longer produces). They made it seem rather simple. I'm not sure if it was to allow us time to mourn and not overwhelm us from the start? Or if they're like many other "book smart" medical experts with no real-life, 24/7 Type 1 gaming experience and really didn't know any better. They were (and still are) basically preaching that we should be able to play the Type 1 game without any dietary restrictions (well, except for Gluten in our case because of the Celiac disease). It's with this knowledge that we began our Type 1 journey. **One thing to note here is that Adele was 2 and 1/2 years old when she was diagnosed, I'm not sure what they'd tell an adult as far as recommended diet?

But what if we apply more of the "food as medicine" Celiac philosophy to the Type 1 game? After all, food is controllable, along with exercise and insulin dosage, and a big part of the Type 1 balance equation. What if part of our Type 1 gameplan is to only eat foods that work with our bodies instead of work against it? For me and Adele (and anyone else with Celiac disease), any food that contain gluten triggers our bodies to work against itself by causing damage to our bowel and make us sick. What if a Type 1 gamer would eliminate foods that wreak havoc on blood sugar and make them sick? I've always wondered how much of an effect that this would have on Type 1 blood sugar stability and control.

If it were me I'd give it a try without hesitation. To me, a low carb, whole food, high protein, no dairy diet would seem to make so much sense as a winning Type 1 game plan. It would be difficult to adapt at first, but so was the gluten-free diet when I first started and now I have no problem whatsoever following it since I feel sooooo good on it. It is worth all of the effort.

So, I'm still not the one with Type 1 diabetes and Adele is still just 9. At her age she just wants to be like everyone else, so I'm not pushing this on her right now. It'll have to come from her if she is to adopt this way of life. Right now we're teaching her about healthy eating, mostly by example, while trying to limit the "junk" food but still letting her be a kid as much as possible. Maybe we're missing the boat? Maybe modern medicine (the pill pushers) are missing the boat? Damn, I wish I wouldn't question myself as much...

Dear Thursdays, we need to talk...

2010-01-16T16:26:00.000-04:00

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

Yours truly,
The LeBlanc family

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

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

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

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

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

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

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

Numbers

2010-01-05T15:41:00.000-04:00

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

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

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

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

Thursday, January 7th

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

Friday, January 8th

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

Saturday, January 9th

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

Sunday, January 10th

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

Monday, January 11th

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

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

2010... Bring it on

2010-01-05T01:17:00.000-04:00

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

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

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

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

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

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

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

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

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

Christmas Balance

2009-12-29T15:46:00.001-04:00

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 !!

2009-12-22T08:54:00.000-04:00

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?

2009-12-11T21:57:00.000-04:00

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

2009-12-09T13:31:00.000-04:00

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?

2009-12-03T12:00:00.000-04:00

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...

2009-11-25T14:27:00.001-04:00

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

2009-11-19T11:29:00.000-04:00

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

2009-11-16T15:11:00.000-04:00

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

2009-11-09T10:40:00.000-04:00

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

2009-11-06T16:12:00.000-04:00

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 !!

2009-11-02T09:36:00.000-04:00

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

2009-10-24T21:59:00.000-03:00

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?

2009-10-17T15:47:00.000-03:00

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

2009-10-05T15:01:00.000-03:00

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?

2009-09-28T12:54:00.000-03:00

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...

2009-09-17T20:52:00.000-03:00

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

2009-09-03T10:53:00.000-03:00

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

2009-08-28T12:00:00.000-03:00

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 !!

2009-08-20T10:35:00.000-03:00

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

2009-08-12T10:05:00.000-03:00

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

2009-07-26T22:27:00.000-03:00

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?

2009-07-21T15:51:00.000-03:00

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

2009-07-13T21:31:00.000-03:00

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 ?

2009-07-06T10:55:00.001-03:00

Canada Day face painting.

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

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

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

Saturday, July 4th

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

Sunday, July 5th

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

Monday, July 6th

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

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

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

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

Adele's toe part deux

2009-06-30T21:56:00.000-03:00

Happy Canada Day !

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

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

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

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

Monday, June 29th

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

Tuesday, June 30th

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

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

JDRF Annual General Meeting

2009-06-23T10:38:00.000-03:00

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

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

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

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

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

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

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

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

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

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

1:15 pm -> 8.4 (did nothing)

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

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

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

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

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

10:00 pm -> 7.7 (low avoided)

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

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

The power of a toe

2009-06-11T11:20:00.000-03:00

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

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

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

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

Monday, June 8th, 2009

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

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

Keep on trying...

2009-06-06T16:45:00.000-03:00

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading...

CGMing part 2...

2009-05-26T13:06:00.000-03:00

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

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

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

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

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

Type 1 CGMing

2009-05-22T10:38:00.000-03:00

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

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

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

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

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

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

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

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

Thank you

Beyond the surface

2009-05-12T22:29:00.000-03:00

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

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

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

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

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

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

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

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

I don't want to play anymore...

2009-05-05T22:14:00.000-03:00

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

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

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

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

Mourning

2009-04-28T14:36:00.000-03:00

Even 6 and 1/2 years after Adele's Type 1 diagnosis, I think I am still going through a certain mourning process. The chronic aspect of Type 1 Diabetes hits me sometimes. I have fond memories of my youth, coming and going as I pleased, litterally riding my bike from sunset to sundown, not a care in the world. It makes me sad to think that Type 1 has robbed this from Adele. I even feel guilty when I get up and just go out for a bike ride. With Type 1 Diabetes you can't do that. Everything has to be carefully planned. It's just part of the game, always on your mind, always trying to think ahead to try to avoid highs and lows.

Today Adele and I had the opportunity to speak at the UPS JDRF Telus Walk to Cure Diabetes fundraiser kickoff. Adele was quite shy in front of the big crowd and didn't want to speak. Mr. Norm Robichaud's speech was quite moving. If that didn't encourage UPS staff to step up to the challenge and participate, nothing will in my opinion. Excellent job Mr. Robichaud and THANK YOU once again UPS for choosing JDRF as your charity.

We have an apointment with the Medtronic rep Thursday, May 14th for our pump training. It is really more training on the Continuous Glucose Monitoring aspect of the pump system, but she will also show us various functions that the new pump does above and beyond what are current pump can do. We're quite excited!

We had a good Type 1 game day today. Actually, the entire week was pretty good really. Like I had already mentioned, it's not because we're doing a better job than on the not so good days, it's just that Adele's body seems to be cooperating. I have been having a few problems with her breakfast though. This week she started eating 2 toasts instead of the usual 1. I totally agree with the 2 toasts, since 1 small toast seems like hardly enough to keep her going and ready to learn at school. The problem with the second toast is that it is causing her sugar to go up 1 to 2 hours after she eats. But then the sugar crashes during the 3rd hour. If I give more insulin after breakfast to avoid the rise in blood sugar, she will likely crash lower during the 3rd hour which is not good. Less insulin will cause the blood sugar to rise even more, which is also not good. I tried giving her more insulin via her basal before she wakes up to try and give her an insulin head start before her breakfast, but she was waking up in the 4's - good numbers, but also a bit too low which may get even lower if she suddenly becomes more sensitive to insulin (this occurs very often) or if she decides to sleep in (like on the weekend). Not sure how or if I can fix this? Adding protein to the breakfast menu would likely help, but we're dealing with a typical 8 year old who is a picky eater. She likes bacon, but I'm not too crazy about feeding her bacon every morning...

Here are a few game highlights from this week:

Monday, April 27th, 2009

7:05 am = 8.9 (highish, but still pretty good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:30 am = 13.3 (high)

9:20 am = 4.2 (she ate 15g carbs, no insulin to try to avoid low)

9:50 am = 3.9 (still went low before her morning snack)

Tuesday, April 28th, 2009

7:00 am = 4.6 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:50 am = 10.6 (still too high)

9:50 am = 5.0 (before her morning snack, she ate 12g carbs, no insulin)

10:50 am = 4.9

Wednesday, April 29th, 2009

6:50 am = 5.9 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:45 am = 11.2 (still too high)

9:55 am = 4.6 (before her morning snack, 17g carbs, no insulin)

10:50 am = 5.5

We'll see what the next few days bring... Thanks for reading

When life messes with your game plan...

2009-04-24T09:36:00.000-03:00

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

Here are yesterday's game highlights:

Thursday, April 23rd, 2009

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

Friday, April 24th, 2009

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

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

Thank you UPS

2009-04-22T14:41:00.000-03:00

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

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

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

Being unpredictable is the only thing that is predictable.

2009-04-14T15:59:00.000-03:00

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

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

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

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

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

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

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

Easter gaming and support groups

2009-04-12T20:47:00.000-03:00

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

Yesterday's highlights are:

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

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

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

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

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

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

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

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

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

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

5:20 pm = 4.0

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

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

Spring flu season

2009-04-06T10:01:00.000-03:00

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

Weekend highlights…

Saturday, April 4th, 2009

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

Sunday, April 5th, 2009

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

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

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

What's in a word...

2009-04-03T11:46:00.000-03:00

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

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

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

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

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

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

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

Gettin' it

2009-03-25T21:52:00.000-03:00

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

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

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

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

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

2009-03-25T21:26:00.000-03:00

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

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

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

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