Thursday, November 13, 2014

Looking at the glass half full on World Diabetes Day


World Diabetes Day is celebrated every year on November 14th, the birthday of Canadian Sir Frederick Banting who, along with Charles Best, discovered insulin in 1922.  They gifted the patent rights to the University of Toronto, with the intention of making the treatment widely available to diabetes sufferers.  Sadly, I cannot see such a willingness to help patients happen with today’s pharmaceutical companies if a true cure were discovered.  Thank you very much Sir Frederick Banting and Charles Best for saving Adele’s life. 

Leading up to this day of celebration, I have been thinking about our personal journey playing this Type 1 game for just over 12 years now and how it has molded us.

Ten years ago, I understood that for everything that we’d lost, that there was also something gained.  I knew this to be true, but in my heart I still couldn’t see any gains at that moment with Adele’s Type 1 diagnosis.  I really just felt broken.  It was less than 2 years after Adele’s immune system mistakenly attacked and destroyed the cells in her pancreas that produce insulin and regulate blood glucose levels.   

I was mourning how this chronic disease had tarnished Adele’s initial clean bill of health, the quality and potentially shorter quantity of her life and the selfish part of me was mourning the loss of a simpler life as her father.  I was bummed for all of the extra that we needed to do now as Type 1 parents thinking that this wasn’t what we signed up for.  I knew that sometimes things like incurable chronic illnesses just happen.  I understood this to be true, but my subconscious mind kept telling me that it still only happened to others like it always had until then.  It wasn’t supposed to be like this.  I felt sad, cheated, afraid and vulnerable.  I dreaded the upcoming work that we needed to do from now on.  I resented that there would never be any closure, that this was never going away unless a cure was found. 

Fast forward to 2014 and I have been asking myself if anything was indeed gained during our Type 1 journey since then.  Kind of like a “Where are they now” reality show where they profile people or families ten years after winning the lottery jackpot.  Was this the best thing that ever happened to our family or the worst?  Was the aftermath growth or destruction or a bit of both?  So as I sit here writing this, I must ask the question: How has Type 1 gaming affected my life path?  There is absolutely no question that Type 1 Diabetes has changed me (as well as our entire family).  It has surely deepened the wrinkles on my face as well as darkened the circles beneath my eyes.  But it has also undoubtedly been a catalyst for growth and positive change… 

In 2009 I wrote a few posts that many didn’t agree with (http://thetype1game.blogspot.ca/2009/11/i-love-type-1-diabetes.html and http://thetype1game.blogspot.ca/2009/11/love-part-two.html).  Five years later, I still believe that the key to living well as a Type 1 is that we need to learn to LOVE it.  Like siblings, we tend to not always get along, but between these fights, I do think that there is an ever present underlying amount of LOVE that needs to continue to flourish.  I can’t always access it, but I feel that it is there.  Type 1 hatred will surely eventually make us sick.  And still won’t make it go away… 

Type 1 Diabetes has made me appreciate how truly amazing my body is.  Having studied biology in university, I had learned a lot about how we constantly adapt, thrive and survive as living beings, but trying to be Adele’s pseudo-pancreas every second of every day has really put these things in perspective.  I have gained so much respect for my body and everything that it does in order for me to be alive.  I also realize that all of this awesomeness can go away in an instant.  Type 1 Diabetes is a constant reminder of life’s fragility.  It can never be forgotten.  Completely ignore Type 1 Diabetes for even just a few hours and the Type 1 gamer will surely become very sick.  Keep this up a few hours longer and the Type 1 gamer slips into a coma, eventually ending up in a coffin.  Without insulin, a Type 1 gamer dies.  Facing death like this surely has a way of forcing you to focus on what’s important since you’re constantly just one insulin injection away from the Grim Reaper.  We’re all going to die one day.  Type 1 Diabetes is a constant reminder that it could be any day.   

This past year I have also come to recognize a certain irony with chronic disease.  Yes, they are very serious but at the same time, if we take them too seriously, we become consumed and paralyzed by them thus leaving us in a less than ideal state to be able to give the best care possible.  By trying to control too much, we end up being too tired to control what can be controlled.  We also end up enjoying too little.  Being human, I still get caught up in this, but I really do think that I appreciate the little things that much more.  Society and marketing teach us that joy is in the big things like once in a lifetime trips and expensive material possessions, but in reality life’s deepest joys are in the simple everyday moments that are too often overlooked.  Things like family movie night, going for a run with Adele and sitting down for a family supper on a Wednesday night talking about our day.  I know that we often realize these things as we get older if we’re paying attention to what life is trying to teach us, but I also believe that Adele’s Diabetes has been a catalyst for changing my way of seeing what’s really important in life and to not take things too seriously. 

After over 12 years of hard work, I believe that I am now beginning to recognize some good that has come out of our Type 1 journey and find that it is important to recognize and honor this even if it not the path that I had chosen.  Does this mean that I do not wish for a cure someday?  I think it actually motivates me that much more to do all that I can to be part of a cure…   

Again, thank you Sir Frederick Banting and Happy Birthday !!

Friday, May 16, 2014

Maybe you're now old enough to understand why...



I really don’t think that I’ll ever be done blogging (or writing).  Yes, it does require time, which isn’t always something that most have plenty of, but it can also be a bit more complicated than that… 

Adele is in her senior year of junior high and is now online more than I am.  Like most teenagers, social media and the internet are a big part of her life now.  Most of my blog posts are quite raw, tell it like it is, don’t hold anything back writing and for this reason I would not want Adele to read them and misinterpret the content and feel bad in any way.  I really don’t know if Adele has ever spent time reading my blog, but it being there on the web, it is always a possibility.   

Adele, if you are reading this please know that we LOVE you very much and that we will ALWAYS be there to support you in every way that we can.  Type 1 gaming is a lot of work and very frustrating sometimes but none of this is your fault whatsoever.  You have often asked me why your name came up in the Type 1 lottery, and like always, I cannot give you an answer other than because you are strong enough to handle it.  Life often gives us challenges and Type 1 gaming is just one of them.  It’s not personal.  It’s not your fault.  You didn’t do anything to cause it.  You are not less because of it.  It just is. 

The best things in life require the most work and also force you to step out of your comfort zone.  The sweetest bike rides require work dedicated to bike maintenance and setup, regular saddle time to gain fitness and Mother Nature’s cooperation with perfect weather conditions.  Relationships require lots of time and attention as well as inevitable rough times working through many challenges and problems.  A close family unit requires consciously making time for each other, compromise and supporting each other through thick and thin.  But this discomfort and hard work are also the very reason WHY these things are the very best that life has to offer.  We never appreciate things that come easy…  Type 1 gaming doesn’t come easy and we appreciate and love you that much more because of it. 

The day of your diagnosis, I promised myself to do every single thing in my power to help, support and ensure your best care possible.  I never, ever regret or question all that I do for your Type 1 Diabetes and would do it all over again in a millisecond.  No questions asked.  You are worth every single second of effort that we put into your care.   

As Type 1 gamers, I believe that we have a responsibility to be part of the movement towards new Type 1 treatments and the quest for the cure.  This includes spreading much needed awareness and supporting research through JDRF.  It is our responsibility to speak up, to tell it like it really is.  Type 1 gaming mostly happens behind closed doors when no one else is looking or listening which is why I created this blog, to open this door even just a tiny bit in order to give outsiders a glimpse of what it’s like on the inside.  We owe this to ourselves and to all other Type 1 gamers.  We’re not complaining.  We’re speaking up. 

You’re you and you’re perfect just the way that you are.  You have all the tools within you to strive.  You are and always will be enough.  I wouldn’t change a single thing about you Adele…  Well, I’d take away your Diabetes if I could.  But, I think you already knew that.

I love you Adele

Papa

Tuesday, December 17, 2013

Eleven years and counting...


On the first of November, we began our 12th year of Type 1 gaming.  In a way, looking back, we sure have come a long way.  But on the other hand, some things are still exactly the same.  Below is a list of things learned along the way that I wish someone would have told us when Adele was diagnosed. 

1 – Type 1 gaming is not a sprint.  Even though you really want it to go away and you really want to learn how to manage and deal with it as quickly as possible so that you can get back to your normal life, it just doesn’t work that way.  Type 1 gaming is more like a never-ending ultra-marathon.  Be sure to pace yourself.  The past few years, my wife and I were displaying many symptoms of Diabetes burnout.  Even if your intention is good, a completely burnt-out Type 1 caregiver will be quite useless.  Be careful and don’t forget to take care of yourself. 

2 – You will eventually know exactly what you need to do but will sometimes still feel like you really don’t know what you’re doing.  As soon as you think you have it figured out and that it makes sense, it won’t.  It’s just part of the game.  It never gets easy.  Accept that fact.  I’m still working on this one… 

3 – In many ways the needles are the easy part.  At first it can be hell with young children, but it is straightforward – inject and deliver.  Trying to maintain blood glucose within normal range at all times like a non-diabetic is the complicated and frustrating part of the Type 1 game.  Even with her best (in-range) A1C, given her 10-12 blood glucose checks per day, I cannot remember a day where Adele was in the normal range for the entire day.  I have been trying for years to get a day of normal range blood glucose values at all finger pokes in one day, but it has never happened yet.  This is why insulin is not a cure. 

4 – Although we do not really limit Adele’s carbs (she will make that decision for herself as an adult), I do believe that a low-carb diet greatly improves blood glucose control.  It’s very simple and just makes sense to limit what the body cannot process – carbs.  Just like with food allergies, simply avoid what makes you sick.  I’m really not sure why modern medicine has not connected these dots. 

5 – Support groups are good but be weary of the “super-positive” members.  They usually make you feel worse when they preach how “easy” they find it.  Type 1 gaming is not easy.  Look for support group members who are “real”. 

6 – A1C values should never be compared amongst Type 1 gamers.  Regardless of the number, you did your absolute best given the circumstances so give yourself a pat on the back.  And besides, a low A1C may very well be associated with many dangerous lows. 

7 – Like most things in life, Type 1 Diabetes seems to work in cycles.  Whether you’re going through a streak of easier to manage, good numbers or the opposite, it will always inevitably eventually switch.  It always does.  It’s just the way it is. 

8 – Most people will not understand the Type 1 game and what we go through every minute of every day.  I didn’t either before our number came up in the Type 1 lottery.  Either take the opportunity to educate them and/or move on.  Frustration serves no purpose other than sucking your much needed enthusiasm and energy. 

9 – Use your medical Diabetes support team (endo, family doc, diabetes educator nurse…) for “support”, but try not to rely on them too much.  For better control, I believe it is best learn to make the necessary insulin dosage adjustments yourself.  You will then be in a better position of transferring this knowledge to your growing child.  Besides, unless someone in your support team actually lives with Type 1, you have more knowledge than they do.  You’re the expert. 

So there you have it…  Our personal, no formal training, just real life experience, advice list.

Monday, August 26, 2013

4 days


Hurricane Bill hadn't yet started as we dipped the wheels of the Norco tandem we baptized Diabetsy into the waters of Halifax's Point Pleasant park.  It was cloudy, mild but no rain yet as we prepared to head out at 6 am that late August Saturday morning.  The ride that was about to begin was the first edition of the Cyclebetes national relay.  The year was 2009.

I was the first on the tandem that foggy morning and my stoker was Alex Bates.  I knew of him before, but had technically really only met him the day before at the hotel in Halifax.  The very first thing that I noticed with Alex was his upbeat, always happy attitude.  He was excited about the adventure that we were about to embark on and so was I.  His passion for life was contagious and I couldn't help but think that it always seemed that he was living on borrowed time.  Once I began to know him, I realized that he actually was.  We hit it off immediately given our shared passion for mountain biking and there was also the Type 1 Diabetes connection.  Alex was diagnosed shortly after birth and he had really struggled with it.  He had endured eye surgeries and was on dialysis in his early 20s.  It didn't take long to realize that this dude was tougher than I'll ever be.

His enthusiasm on the bike was evident, especially in the force with which he pushed on the pedals.  It almost felt like someone was pushing us from behind on the tandem.  It was a pleasure riding with him feeling like it really was a team effort.  Even with his young age of only 25 years, it felt like I was talking to someone much, much older than me.  He was noticeably wise well beyond his years.

I remember him talking about his kidney / pancreas transplant that he had undergone a few years back and how it had literally given him his life back.  He no longer needed to be on dialysis and the insulin producing islets in his new pancreas were also fully functional maintaining normal blood glucose.  He told me that for him it was as if he had been cured even if he now needed to take very strong immunosuppressant drugs to avoid organ rejection.  I can't quite describe how excited and alive he looked when he was telling me that.  I will never forget that.  It truly was incredible.

Last Sunday, Alex Bates passed away accidentally in a motor vehicle accident while riding his motorcycle, doing what he truly loved.  In the end, it wasn't his Diabetes that took him away like I'm sure so many thought would.  I can't help but think of the role that JDRF research played in making the last 5 or so years of his life quite possibly his best. Without JDRF funded research, his pancreas transplant would simply not have been possible.  It's very comforting to know that the money that I have raised for JDRF has literally enhanced treatments for Type 1 diabetics like Alex and so many others.  I've often thought about it, but I can't really imagine how we're all going to feel once the "real" cure happens.

On Saturday, September 7th, I will be riding my bike 200 kms in honor of Alex Bates feeling grateful to have spent those 4 days with him during the 2009 Cyclebetes relay ride from Halifax to Quebec. 
Please support me if you can...

http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=199481

Thank you
Mike LeBlanc

Friday, August 16, 2013

Our story...


With the Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes just around the corner and lots of new faces beginning to sign up and fundraise, I feel the need to tell our story.  If your life has also been touched by Type 1 Diabetes, I’m sure you can relate since your story is surely similar to ours… 

In the fall of 2002, Adele started showing signs that something wasn’t quite right.  At such a young age, she couldn’t tell us how she was feeling, but her unquenchable thirst and frequent high volume urination could no longer be ignored.  On Halloween night we got the diagnosis – Type 1 or Juvenile Diabetes, an unpreventable, chronic disease caused by a malfunctioning immune system that mistakenly destroys the body’s ability to produce a hormone called insulin as well as the body’s ability to manage blood glucose concentration in the bloodstream.   

The doctor explained to us that the treatment is lifelong insulin therapy without which Adele would die.  All Type 1’s must inject or infuse insulin to stay alive.  Insulin cannot be administered orally.  Type 1 or Juvenile Diabetes cannot be reversed or cured.  Insulin is not a cure.  It simply prevents extreme hyperglycemia and ketoacidosis which eventually causes death in a matter of days.  Insulin does not prevent long term complications. 

For at least the first year, it took at least 2 adults to give Adele her injections, one to hold her still while she kicked, cried and screamed and the other to administer the injection.  At the time of diagnosis, we couldn’t leave the hospital before both my wife and I were comfortable giving the injections.  It took almost an entire week to be able to find the courage to shove that needle into our baby, but in the end we just wanted to go home.  I think each injection hurt us more than it did Adele.  

We’ve come a long way since that day in 2002, but we’re still a long way from how it was before the diagnosis.  Adele needs to constantly monitor her blood sugar levels.  And by constantly, I mean pretty much hourly every single day including her birthday, Christmas… and even through the night.  The thing is that almost everything affects blood sugar including stress, fatigue, excitement, a virus, exercise…etc…  It’s not just food intake, it’s also pretty much everything else as well.  A non-diabetic’s body is constantly making tiny adjustments to maintain blood sugar between normal levels.  For a Type 1 diabetic, these adjustments need to be made manually by the diabetic or the caregiver.  All this work and you can still never keep blood glucose values in the normal range at ALL times.  It’s just not humanly possible. 

I will try to post at least a few times per week until the Cyclebetes ride on September 7th in order to try to give you an inside look at living with Type 1 Diabetes and why we need a cure.

In the meantime, please donate if you can and spread the word !!
 
Thank you


Tuesday, August 6, 2013

Yeah, it's been a while...

I really enjoy blogging, but lately the time and energy to do so seem to be slipping away...


During a bike race or a group ride, you’re sitting comfortably in the pack.  The pace is not easy, but you seem to have managed to hide enough from the wind, following the best wheels to make it seem that way.  You struggle a tad up the hills, but when the road levels out again, you’re able to recover and maintain contact with the pack.  The illusion created makes you feel like you can keep this up for the entire duration of the ride or race.  The level of suffering is bearable and almost seems normal after a while.  The legs seem to spin the pedals automatically until they suddenly don’t.  You try to concentrate harder on the task at hand, you dig deeper to try to hang on, but deep down you know your time has come.  You’ve been dropped.  You look up to see the rest of the pack ride away.  They’re not attacking, the pace hasn’t changed, it’s simply your legs that have reached their limit.  You’re done.  I mean, you can still ride, just much slower now.  If you’re a cyclist, you know the feeling.  Complete exhaustion.  You try to eat or take a drink of water to turn things around, but the feeling can’t be fixed.  The only thing to do is finish the ride or race at your own crawling pace.
After our Type 1 odometer rolled over the 10 year mark last fall, that’s basically how I have been feeling.  In this Type 1 game race, I’ve been dropped.  The energy and enthusiasm that I once put into Type 1 awareness and fundraising just doesn’t seem to be there anymore.  The effort turned out to be unsustainable after a while.  I really don’t like it, but it’s still how it is.  In the end, the legs (or body) have the final say in getting dropped even when the mind is still committed to hanging on.
So that’s where we’re at.  I understand that we still mostly don’t really know what we’re doing even if by now we know exactly what we need to do.  We have also learned that textbook Type 1 math is always a simplified version of it’s practical application.  The goal is always independence.  Adolescence, a first step towards this goal has given us more breathing room, but also more time and things to worry about.
Type 1 gaming is so much more than needles and numbers.  The psychological aspect of Type 1 gaming is likely the biggest part even if it is sadly the most overlooked.
On Saturday, September 7th, I will again be riding my bike 200 kms during the 6th annual Mike's Bike Shop Cyclebetes Ride to Cure Type 1 Diabetes.  If you can, please help us reach our goal of $20,000 raised for Juvenile or Type 1 Diabetes research by clicking the Support me! button on the page below and making a pledge.

http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=199481

Thank you


Wednesday, January 2, 2013

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 29th, 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

Monday, July 9, 2012

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...

Wednesday, May 23, 2012

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.

Wednesday, May 16, 2012

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?

Wednesday, February 1, 2012

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...

Tuesday, January 17, 2012

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.

Thursday, January 12, 2012

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.

Friday, December 30, 2011

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

Thursday, December 29, 2011

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…