The hardest ride, but still the best...

No matter how my frozen brain cells analyzed the situation, the common logic conclusion was always that I should pull over, get off the bike and hop into one of the warm and dry support vehicles.  I was recognizing many symptoms of hypothermia and my constant shaking was really making it unsafe for me to be riding a bicycle.  It was about 10 degrees Celsius and I was literally soaked to the bone.  One of the things that cycling has taught me is to be able to endure a certain level of discomfort, but honestly, I had a difficult time thinking of a time when I was more uncomfortable on a bike than at that moment.  Like I have done many times before, my answer was to literally attempt to ride away from the problem.  I just needed to go harder.  After a few minutes, the extra workload seemed to bring up my core temperature and I stopped shaking.  I was not comfortable by any means, but at least I was no longer fearing being hauled off in an ambulance because of a dangerously low body temperature.

The day before the ride was such a beautiful early fall day.  It was sunny, not too warm with no wind.  70 riders were signed up to ride and I was so stoked!

The next morning, Saturday, September 29^th, we woke up to cool temps and heavy cloud.  As soon as I pulled into Mike’s Bike Shop, a light rain started to come down.  It was 8 degrees and the forecast looked quite wet, but riders just kept rolling in.  In a way it was the perfect analogy to Type 1 gaming.  No matter how much planning you do, there are still some uncontrollable factors that can and do mess with your perfect plan.  Just like the crap weather we were facing, high and low blood sugars, bad infusion sets just happen.  It’s just a Type 1 game rule…

The early group rolled out at 7:30 am with the main group leaving about 30 minutes later.  It was cold.  It was wet.  It was very uncomfortable.  I was chaffed in areas that I sincerely did not think possible on a bike ride even after a lifetime of riding.  Enduring such pain as a group like that, especially for a reason like helping finding a cure for Type 1 Diabetes creates a kind of bond amongst the sufferers.  A situation like this really teaches you what you’re made of.  The grit and determination of some riders really surprised me.  200 kms cycled in one day with close to 2000 meters of climbing is a challenge in itself, but really tough in these conditions.  For me I believe that in a way it was easier to find the courage to keep pedaling given the whole reason for the ride, but for many without a personal connection to Type 1 Diabetes, they must have had to dig a little deeper to find the motivation to keep spinning the pedals.  I personally have the utmost respect for all who completed the entire distance.  Congrats to the riders who made the finishers list…  Honestly, congrats.

Most riders, including myself, deemed the ride as the “hardest day on a bike in my life”.  One of the things that I love most about cyclists is their positive attitude.  You organize an event that turns into a near-death experience and the riders don’t bitch or complain…  They thank you.

After all the math, $19,479 has been raised and donated to JDRF in search for a cure for Type 1 Diabetes!!  That’s over $4,000 above our initial goal of $15,000. 

From Adele and all other Type 1 gamers out there, I would like to personally and sincerely thank everyone who made this happen!  Thanks to all participants and to the sponsors: Mike’s Bike Shop, Arcteryx, Giant bicycles, Terry Tomlin, Cycle Lambert, Sock Guy, Simple Signs and Dieppe Rotary club as well as all who donated including Pablo Vergara for all his help and for sacrificing his dignity and hair for the cause…

THANK YOU !!

*Photo by Don Ricker photography

Cleansing misconceptions

Solo bike rides in the rain are very cleansing. During one of these “cleanse rides”, I started thinking about Diabetes misconceptions. So many blog entries are born during solo rides. Words just flow so much better when I’m out riding. Then I get home and struggle to remember how I wanted to say what I needed to say. Here goes…

Dealing with the many Diabetes misconceptions out there is such an against the current battle. In a way, the Type 2 epidemic is almost a hindrance to Type 1 awareness and understanding of the disease. There are many, many Diabetes misconceptions out there. Here are a few… And don’t feel bad if you believe (or hopefully after reading this post believed) these to be true. The purpose of this post is to educate and inform.

1 - Type 1 Diabetes is controllable with insulin. I remember being told this when Adele was diagnosed and it took me years to realize that it was in fact untrue. To me, the part of this concept that is false is the word “controllable”. To be in control of your motor vehicle means that you can make it go exactly where you want it to go and you can stop it in a safe amount of time if necessary to avoid an accident. If all drivers were in control of their respective vehicles at all times, all accidents except maybe mechanical failures would thus be prevented. Now given this analogy, if Type 1 gamers were able to “control” their Diabetes, all life-threatening complications could be avoided since blood glucose levels could always be within the normal range. That’s not always the case. Even when we do every single thing right, there is always something out of our control that negatively affects this so-called “control”.

Technological and medical advances bring us closer to being able to achieve true control, but we’re not there yet. Getting back to our driver analogy, the control achieved by the Type 1 Diabetic would be that of a drunk driver. Your vehicle is often swerving from one side of the road to the other and the best you can do is try to keep it from falling into the ditch.

I hate it when newly diagnosed gamers are told that Type 1 is “controllable”. I spent nearly 10 years taking this literally and getting down on myself when I wasn’t able to maintain normal blood glucose values. Injected insulin keeps the Diabetic alive, it doesn’t normalize blood glucose at ALL times like in non –Diabetics.

2 - Once you get the hang of it and you get to “know your body”, Type 1 Diabetes becomes easier to manage. It never becomes easier. Eventually, you know what you need to do, but you still never really know what you’re doing. Even after close to 10 years of gaming, we’re really just winging it day in and day out. So, when you ask me if Adele’s blood sugar is going to be okay for a few hours in order for her to do something that she really wants to do, the best answer that I can give you is: “I’ve done everything in my power to maximize the chances that her blood glucose will be within normal range during this period, but I cannot guarantee that this will be the case” or in other words “I really don’t know”.

So there you have it. Two Diabetes myths explained… When you really think about it, the guesswork involved in Type 1 gaming is really insane considering the possible risks.  Then again, I don't make up the game rules, I just try to live with them...

Beyond what you see on the outside

Just because Type 1 gamers don’t look sick it doesn’t mean that they don’t deserve a cure.

As we embark on another year of JDRF fundraising through the Walk to Cure Type 1 Diabetes as well as the Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes, our challenge is once again trying to compete with all of the other worthwhile causes.

There are so many other diseases out there with their images of thin, debilitated victims. Personally, I often think that it seems easier for them to touch our hearts and for us to reach into our pockets to support the search for better treatments and a cure for their ailment. Humans are likely more apt to help those that look sick, the sicker the better. It’s just the way it is.

Type 1 gamers have 2 major things against them in regards to society’s perception and willingness to support the search for a cure:

1 – Stereotypes about “Diabetes” as a whole meaning not understanding the differences between Type 1 and Type 2 which is often associated with phrases like “Can be reversed” or “Can be controlled with diet” or “Caused by poor lifestyle choices”. Type 1 Diabetes is in no way caused by lifestyle. Type 1 Diabetes cannot be prevented. Type 1 Diabetes usually strikes innocent children, often with no family history of the disease.

2 – Before complications arise, Type 1 gamers generally look very, very healthy on the outside. They run, they play, they work and often thrive. Aside from Adele’s insulin pump clipped to her belt, infusion set (that is usually hidden under her clothes) and calloused finger tips she looks as healthy as all of her non-Diabetic friends.

Type 1 gaming is like living a double life. There is not one aspect of our life that isn’t affected by it. It’s always there and must be dealt with 24/7 without any exceptions yet we don’t talk about it all of the time. Type 1 gaming always seems to take place in the background, behind closed doors. Society is generally frightened by the sight of blood or needles, so Type 1 gamers tend to test and inject insulin in private.

Even if the pain and suffering isn’t always apparent on the outside, it doesn’t mean that it doesn’t exist. Type 1 gamers deserve better. We deserve a cure.

Flow State

Even with all my good intentions, I really haven’t been good at all at updating this blog. As of late, it seems that all that I can do is just follow the current of my life. I’m tired, not depressed, and just living in a constant “flow state”.

I’m not really sure if this is a realization that comes with age, or if it’s related to living with a chronic illness, but a few months ago, it suddenly hit me that I’m going to die. Until now, I had never really, really thought of this. I mean, I was just way too busy living. But in reality, it is one of the rare sure things that eventually happen to every single living organism on this planet. There is absolutely no way of avoiding it. The death of our physical body is inevitable. I mean, like everyone, I’d learned this as a child, but I had never really, really thought about the reality of it until now.

Personally, in a way, this knowledge has actually been a relief. It’s like studying for an exam when you know you have absolutely no chance of passing. All of a sudden, the stress and pressure of doing well dissipates and goes away. Studying becomes much more enjoyable and simply an opportunity to gain knowledge that will enrich your life. What I’m trying to say is that no matter how fit, healthy and strong I make my physical body, my final outcome is the same as everyone else, our physical bodies are going to die. On our death beds, we are all the same. The same as the chain smoker, the millionaire, the homeless drug addict, the superfit professional athlete. Our physical bodies all become fertilizer.

As a Type A personality perfectionist, being bombarded with all this advice as to what we should eat, how active we need to be and how we need a certain expensive product to enhance our life, it made me realize that even if I diligently follow each and every one of these guidelines that the outcome in the end is still the same – fertilizer. As a Type 1 gamer, the logic is the same. Even if I manage to attain excellent control, the end result is still the same as everyone else including non-gamers…

One of the best feelings that I get from riding my bicycle is carving through buff single track on my mountain bike. At speed, the whole thought process ceases and everything seems rather reflex based. Your body just seems to maneuver the machine automatically. You’re not thinking about how you’re riding, you’re just riding. This is probably the main reason why people like myself become addicted to riding bikes. This “flow state” brings you to the root of what it means to be alive. It strips out all of the “bullshit” that’s in our head and enables our body to make all of the decisions instead. This feeling of no-mind is incredibly powerful.

So the epiphany of realizing the true meaning of the old proverb “Don’t take life too seriously, no one gets out alive” has me seemingly living in a constant “flow state” not only on my bike but in Type 1 gaming as well. I’m letting my body play the game instead of my mind. We calculate carbs and insulin bolus amounts, correct lows and highs and just move on. When in this “flow state”, there is no dwelling on the past or looking too far ahead in the future.

I’m not really sure if I like this yet. I mean on one hand it’s the closest that I’ve been to really living in the NOW I guess, but on the other hand, during our last Diabetes clinic appointment, we were told that Adele's A1C was great but... she was having too many lows. We were just dealing with them and moving on without analyzing why and attempting to make the appropriate corrective changes.

In a way, it seems like you just can’t win while playing the Type 1 game… But then again is it really worth getting upset about since the final outcome is always the same – fertilizer?

Ski slopes and jelly beans

 

I’m not really sure how she made it down the hill. She was shaking and complaining that her ski boots were too tight. I was trying to remember how much carbs she had consumed before hitting the slopes for a few runs, trying to convince myself that it was enough, but I still knew that she was low. She insisted on going to the lodge to test.

I don’t remember if I loosened her boots before or after testing since she kept telling me that her feet hurt soooo bad, but I do very clearly remember the number that appeared on the meter after testing her blood sugar. 1.5 (27). Any number in the 1's is very, very, dangerously low. I sat her down in the snow next to the ski rack and began shoving Mike and Ike jelly beans into her mouth. Skiers were coming down the hill behind us while others were racking their skis after a few runs or getting ready to hit to slopes, all unaware of the medical emergency that was happening at that very moment while Adele was sitting there in the snow, every single cell in her body literally on the verge of death begging for sugar.

As Adele’s caregiver, I always feel like such a failure when low lows like these happen. They don't happen often, but I should know better after nearly 10 years of gaming… Why didn’t we test right before getting a few runs in instead of waiting until now? Why did we get too excited? As much as we were looking forward to the very first ski day of the year, we were certainly not having much fun right now… How could I have been such an incompetent Type 1 gamer? How could I lose focus like that?

After forty to fifty grams of carbs literally shoved down her throat and about 10 minutes later, Adele looks at me with a big smile and says “I feel better now, get your skis ready, I really want to go again!” I felt sad realizing that almost dying has become normal to her. Lows are so damn scary in their urgency and immediate danger, but can be turned around with a quick acting sugar fix. And in a matter of minutes, the dying is back amongst the living… Almost as if nothing had ever happened. What a crazy way to live. Insane really…

Sometimes Type 1 gaming can be so ironic. The physical exercise which should make us healthier, can lead to a life threatening medical emergency, whereas unhealthy sugar-loaded candy becomes the life-saving medicine… 

After this, Adele’s blood sugar hovered in the 8s and 9s (144 to 180) for the rest of the day and we still managed to salvage the day by getting enough runs in to finish the day with tired legs and huge smiles.  With Type 1 gaming, a day on the slopes is never just about skiing...

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

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...

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

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

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 !!!

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?

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

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...

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

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...

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...