Monday, November 30, 2015

Holding hope in the palm of your hand

How would it feel to hold something in your hand that had the potential to positively affect every single aspect of your life?  Something so potent that just holding it would bring you to tears since it would be able to change EVERY LITTLE DETAIL OF EVERYTHING in your life?  Is there anything that exists that could potentially have such power?  Some people may think of a jackpot winning lottery ticket, but I’m talking about something here even more life-changing that money cannot currently buy.  When Sir Frederick Banting discovered insulin in 1922, he surely felt what I am trying to explain while holding a vial of insulin.  Before his discovery, a Type 1 Diabetes diagnosis meant a certain death in a matter of weeks.  With insulin, the prognosis was extended to years.  Dr. Banting knew that insulin wasn’t a cure, but to see patients miraculously awaken from diabetic comas shortly after being administered insulin must have been one of the most amazing experiences that a human being can have.

I have been hearing about “encapsulation” research projects for the last few years and to be honest was never really too excited about them until now.  The project that gives me the most hope is currently being led by a company called Viacyte Inc.  This year, ViaCyte announced that their Encapsulation research was expanding tohuman clinical trials in Canada!  Human trials, that’s further than most other “life-changing” researches have ever gotten.  That got me very excited!  Transplants have been used as a Type 1 treatment for a few years now, but necessitating very strong immunosuppressant drugs which can potentially cause many other issues.  With the encapsulation project, the transplanted cells are “protected” from the immune system in a small pouch made of a selectively permeable membrane that enables insulin to be released while protecting the insulin producing beta cells from being destroyed by the immune system.  This “pouch” would be surgically implanted under the skin and do the work of a healthy pancreas for up to 24 months.  This would mean no more blood sugar checks, no more calculating carbs and no more insulin injections for up to 2 years.  Words cannot fully explain the positive effect such a treatment would have on those playing the Type 1 game…  Seriously, although it is not a true cure, this would be a HUGE life changing discovery.
Such research is not cheap.  I can’t even imagine how much money was spent to get to this point.  The Juvenile Diabetes Research Foundation (JDRF) has been partnering with Viacyte for this project.  Since 2007, the Mike’s Bike Shop cycling club have raised over $150,000 for JDRF, which is but a small portion of their budget but surely enough to make a big difference.  For this reason, I feel that I have personally contributed to getting this research project this close to the finish line.

On this last day of November, which is Diabetes awareness month, I would personally like to thank all those that have donated and worked so hard this year to help us raise $32,411 for JDRF in 2015 !!  THANK YOU  THANK YOU  THANK YOU !!  Your support and contribution are making a difference in the lives of those living with Type 1.

Monday, September 14, 2015

Thank You

Glancing down at the big cheque before the presentation photo I got choked up as soon as my eyes focused on the total amount that we had raised.  The goal was $25,000 and the amount written on the cheque was above that goal.  We had raised $29,000 for JDRF! This brings our total raised and donated to JDRF to close to $150,000 since 2007! 

When I think about this for a moment, I realize that it’s more than we paid for our house in 2002.  That is crazy!  Compared to other larger scale events like walks and family events, it’s not as much, but considering that we are a local cycling club in a small city and that the participation at all of our Cyclebetes rides has never surpassed 70 riders, including this year with 69 participants, that number becomes so much more impressive.  $150,000 donated to JDRF to support research that has literally changed lives with better treatments and certainly gotten us closer to realizing my dream for a cure in Adele’s lifetime.  Without Cyclebetes, Mike’s Bike Shop and the Mike’s Bike Shop cycling club, JDRF never have had that $150,000.  Thinking about that just blows me away. 

I appreciate receiving congratulations on the event’s success, but honestly I am but a small part of it.  It would be nothing at all without the support of everyone involved.  I understand when people affected by Type 1 Diabetes step up and volunteer time and energy in the quest for a cure, but when someone who is not affected by the disease puts in the amount of hours that some of my friends have to make this ride a success I feel really blessed to be surrounded by so many good and kind people.  I really appreciate all that you do to for JDRF.  Thank you very much. 

The ride was the most successful yet in regards to funds raised, but I am also sure that it was the best all-around with all of the food, refreshments and after-ride party as well.  I really, really enjoyed the entire day.  We made a few minor mistakes from which we will correct for next year, but for the most part, the day’s events ran quite smoothly. 

Thank you to our main sponsor, Mike’s Bike Shop, without which the ride simply could not exist.  There is no other bike shop that I know of that even comes close to everything that you have done for our charity.  Your kindness is very much appreciated.   Thank you Rick Snyder.   

Thank you to the Mike’s Bike Shop club members for all of your help.  Thank you Luc Belliveau for all your work.  I still can’t believe how many sponsors you were able to find.  And thank you for all of your hard work getting most of the food served during the day.  You are a huge part of the event’s success.  Thank you Pablo for all your work also, the many emails, phone calls, the website…etc…  And thank you for willingness and courage to sport your new Mister T look for the cause.  Your work and enthusiasm really means a lot.  Thank you Bill Goobie for the maps and for spending the day driving around at 25 km/h ensuring rider safety.  Thank you Jeff Currie for all the input during our meetings, the printable maps and directions.  Thank you Michelle Chase for marking the course, helping out during registration as well as with lunch.  Thank you Christian Charette and Melissa Bordage for your help with the feed stations.  Thank you Martin Pelletier for marking the course even during your first week back to school.  And thank you Don Ricker for all the photos.  Your photographic talent is beyond words and photos that enable all participants to relive the day is simply priceless.  Thank you. 

Thank you Janice Lirette-Evers for your amazing work of handling the money as well as setting everything up for the door prizes.  You are an invaluable part of our Cyclebetes team.  Merci beaucoup.  Thank you Mariette Roussel for helping with registration.  Thank you to all support vehicle drivers Gerry Allain, Patrick Evers, Christian Jasper, Steve Kikkert, Bruce Thorne and Sheena Lutes-Spicer.  Thank you Elmer Wade.  And thank you Jennifer Boyd, Cindy Belliveau and Johannah Bubar for taking care of all of the food and beverages.  Thank you to all that came out to help set things up Friday evening. 

Thank you to all of our sponsors which are almost too numerous to list.  Thank you Mike’s Bike Shop, Sobey’s in Dieppe, MacDonald Buick GMC, Tomlin Sports Marketing, Guy Pellerin of Giant and Arcteryx, Starbucks Dieppe, Sysco, City of Dieppe, Molson brewery, Adrien Levesque and Falstaff Media, Cape Bald Packers, Ray Cormier.  I am sure that I have missed some since there were so many who gave…  Thank you. 

Thank you to all the riders who participated and to all who donated.  I am always impressed by the efforts made to fundraise as well as on the bike during the ride.  Thank you for inspiring.  The rider smiles after the ride always make my day.  Thank you Ben Thorne for giving me the privilege to ride with you as well as for speaking to the riders reminding them why they were riding.  And last but not least, thank you to my family for all of your support. Thank you for putting up with me during the very busy week before the ride. Thank you Michele and Adele.  I really appreciate it!

 I feel very, very blessed to be surrounded by so many incredibly generous people.  Thank you.  Thank you.  Thank you. 

I still remember the day that I learned to ride a bike as a young child.  I instantly fell in love.  Who knew that over 40 years later I would still be riding a bike, but with a much larger purpose.  Thanks for supporting me in the pursuit of this purpose. Thank you.

Friday, September 4, 2015

A new me?

September 10th will be exactly 5 months since I woke up with chest pains and was diagnosed with Pericarditis.  I am now back at work full-time, feeling better but still not 100%.  

I believe that our purpose here on earth is to learn, but in order for this to happen we need to put in the work and be still enough to listen and closely pay attention.  And this work is likely that hardest work that we will ever do.  The results and benefits are very subtle unlike our more common outer pursuits.  But I do believe that the payoffs of this work are our greatest accomplishments and a true measure of a person’s success.  I have been living much slower and working very hard this past summer trying to learn what the universe is trying to teach me.  I like to believe that what I have lost in physical stamina and strength, I have gained in wisdom and depth.  In my opinion that’s what getting older should be like once you’re on the other side of the so-called “hill”.  Some days I’m much better at seeing the positive side of this experience and doing the work, other days not so much. 

In many ways I feel like I am stuck somewhere between where I was and where I need to be.  The new me seems to be doing very well until the old me suddenly makes an appearance, and if I’m not paying attention, takes over.  Too often, I have a difficult time determining what is too much.  My head judges and decides on a plan, but my body just tells me that it isn’t going to work once I get started.  My apologies if I have cancelled plans last minute lately with anyone reading this.  I have been trying to listen to my body for a change. 

A few weeks ago, I was frustrated with this feeling of being stuck in “no man’s land” between being sick and being healthy and fit.  I still get really excited thinking about biking and bike racing with friends, then my heart (and by heart I mean my physical heart) sends me these signals that really put a damper on this excitement.  When I’m rested and calm, I feel mostly normal, but as soon as I try to do too much and get fatigued, I feel these subtle twinges or mini cramps in my chest around my heart.  It’s like I’m now living with a built-in fatigue and stress barometer that I now need to listen to.  My doctor says that these symptoms are normal, but I can’t help but feel impatient at times.  Even on the good days I often live in fear having lost confidence in what I can and should ask or expect my body to do.  

Thinking about this I realize that one of the reasons that my recovery has been slow is because I still have to learn to be more patient.  What we resist persists.  It is really quite simple.  Having patience means learning to be okay with not knowing if or when I will be better.   

Sometimes I feel guilty for feeling bad about my health situation given that I can still ride my bike and live a normal life and that it could certainly be much worse, but other times a part of me feels self-pity.  I guess the important thing is to be aware of these feelings.  My job isn’t necessarily to fix anything but rather simply to recognize and acknowledge.  Once I manage to do this, the self-pity simply goes away. 

My journey back to health the last few months has also been a catalyst for letting go of the obsessive hold that I had been trying to maintain with Adele’s Type 1 Diabetes.  In a way, I didn’t really have a choice in this letting go process since I no longer had enough energy to keep trying to control everything and micro-manage every Type 1 gaming detail.  Adele told me the other day that she liked the new me better since I’m generally in a better mood more often now.  Strange how she can see this side of me while I often feel mostly consumed with frustration on the inside.  Thinking about this as I write, maybe I too like the new me better than the old.  Well, maybe not always, but at least on the good days… 

On Saturday, September 12th, I will again be biking in support of Type 1 Diabetes research in the 8th annual Mike's Bike Shop Cyclebetes ride to cure Type 1 Diabetes. 

Thank you

Friday, May 22, 2015

Heart still on the mend...

It has been 6 weeks since the Pericarditis diagnosis and the only thing that I’m really good at right now is sleeping.  I have completely mastered the art of napping.  I am also getting a bit better at meditation, but often I end up falling asleep, so basically, I’m really only good at sleeping right now.
The ultrasound on my heart a few weeks ago was normal, so after close to 1 month of total inactivity except for short walks, I got the green light to slowly begin exercising even if I still am in no way back to normal and regularly experience symptoms such as a certain tightness in my chest.  So I am now reacquainting myself with the pure simplicity of the solo bike ride with no agenda, no speed, and no timeframe.  As soon as my feet click into the pedals, the bike disappears and the only goal is enjoying nature from the absolute best seat in the house.  I stop and sit on a bench along the gravel trail when I feel like stopping and don’t ride on days when I don’t feel like riding.  It feels very new even if it is more of the same.
As westerners, we have a very unhealthy relationship with death and loss.  It is quite normal for North Americans to fear death even though we know it is imminent, a sure thing.  It is also quite normal for North Americans to act as if we’re never going to die.  Talking about death is taboo since it makes us very uncomfortable and we are completely devastated when it eventually happens.  Dying is as natural as being born, but our perception of it makes us resist and fear it more than anything else.
Living as the seemingly immortal “Mike the cyclist and bike racer” for so long, like a typical westerner, I too am struggling with his untimely death.  I am having a hard time mourning the loss and letting go of this part of my ego.  I miss being fit.  I miss my strong legs and body.  I miss the thrill of riding fast.  I miss the long rides.  I miss the feeling of riding effortlessly.  I miss riding with my old riding buddies.  But now, “Mike the cyclist and bike racer version 1.0” needs to be thanked, remembered and released in order to make room for “Mike the cyclist version 2.0”.  I’m not really sure what features this new version will end up with or when it’ll be ready and that right now seems to be the hardest part. Version 2.0 will need to have absolutely nothing to prove in order to be sustainable.  I’m also hoping that there will be a racing feature with version 2.0, but who knows?  Some days I am fine with not knowing, other days I find myself desperately still holding onto version 1.0. The internal work of letting go in order to allow healing and growth has been by far the most difficult part of my recovery.
The one thing that I absolutely know for sure is that this Pericarditis diagnosis had to happen.  It wasn’t just a fluke.  It had to happen in order for me to begin fully accepting and letting go of Adele’s Type 1 Diabetes.  For me, there was really no other way.  The obsessive, micro-management, attention to detail approach that I have been using to accomplish all things in my life naturally poured over into Adele’s Diabetes management.  It’s what I had learned and knew when I vowed to do every single thing in my control to keep her healthy and protect her as a baby and child, but now it has to end if I am to survive.  I’ve known this for a long while, but I was simply too tired to do it on my own, so my body intervened.  It was the only way that I knew how to play the Type 1 game, to fight it with everything that I had, even if the final outcome would certainly affect my health.  And to be honest, I’d do it again if I had to.  I have absolutely no regrets.
On Saturday, September 12th of this year, I will once again be riding in support of JDRF research for Type 1 Diabetes cures and treatments.  At this point, I’m really not sure how far or how fast I will be riding, but I will be riding.  Please support me if you can…

Wednesday, April 29, 2015

The heart of the matter...

A few weeks ago, chest pain woke me up in the middle of the night.  Sitting on the couch googling heart attack symptoms had me almost certain that what I was experiencing was not a heart attack so I eventually decided not to call 911 or to drive myself to the ER.  After a few hours of sitting up, the pain seemed to have subsided and I slept a few hours before the alarm went off the next morning.  An appointment at the clinic followed by multiple tests at the hospital and I was diagnosed with Pericarditis.  The condition had come up on Google the night before, but I hadn’t really heard of it before then.
The internet defines Pericarditis as “swelling and irritation of the pericardium, the thin sac-like membrane surrounding the heart”.  Its causes are often viral, but it could also be autoimmune (like Celiac disease, Type 1 Diabetes and Hypothyroidism which are all in my immediate family).  The treatment is anti-inflammatory meds and rest.  24 hours after starting the meds, the symptoms were 90% better.  The rest part of the treatment meant no exercise whatsoever except for very light cardio like walking at a pace where you can easily maintain a conversation.  I have been off work since the diagnosis.
My body has spoken now am I ready to listen?
Like any other addiction, I have long realized that my bike has become a survival tool, a way to calm the mind demons, an escape, and a way to numb the pain.  It has become a crutch that I have been leaning on.  I’ve known this for a long while and was totally fine with it except now it has become obvious that this approach is no longer sustainable.  I can’t push through this.  My return back to health can only happen by focusing inward.  For the longest time, when things got tough, I remember feeling that everything was OK as long as I was riding well.  My cycling and to a large extent racing have become large pillars on which I based my overall wellbeing. 
So now, in an instant, this ego based foundation that I was standing on is crumbling.  As I mature, I have recognized that Mike the cyclist and bike racer isn’t really who I am but rather a big part of my ego that I have been identifying with for the better part of my life.  As with all aspects of the ego, Mike the bike racer isn’t really a very happy guy.  He’s only content when he’s racing well and getting the results that he believes he deserves.  But how often does this happen?  Bike racing when taken too seriously becomes a shallow, selfish, egocentric, self-seeking meaningless pursuit.  Looking at my Pericarditis diagnosis through the eyes of Mike the cyclist and bike racer, I am pretty bummed and depressed right now.  Mike the bike racer and cyclist feels betrayed by his body and lots of self-pity.  Mike the cyclist and bike racers reaction is typical of the ego.
By focusing inward, I am trying to go beyond this false self or ego where I believe true healing needs to happen.  It’s been a whole lot of hard work with the ego constantly popping up resisting its own demise but my intentions remain.  My focus has been mindful rest.  Some days I’m very good at achieving this, other days not so much.  But then I get another chance the next day.  Growth cannot happen without a certain amount of suffering and a lot of hard work.  I can't forget that.
Almost 13 years ago, Adele’s Type 1 diagnosis broke my heart and today I am suffering with the physical manifestation of this life event.  My heart is literally broken.  Maybe there was no other way for me to begin letting go of trying to control too many aspects of Adele’s day to day Diabetes care?  Maybe this is the meaning of all of this?  It does make me feel better thinking of it this way.  It gives purpose to my recovery.  It helps me honor what is.  I have not been very good at listening to my body in the past.  Maybe I was never still for long enough to really listen?  Maybe this is exactly what I need at this moment?

Tuesday, March 17, 2015

One day

I wake up rested realizing that I have slept through the entire night.  I instantly smile as soon as I open my eyes.  It’s a Monday morning but I certainly don’t have the Monday blues.  I have never felt so alive, so filled with pure joy and excitement.  I am truly high on life.   

The corner of the kitchen counter seems so empty without the diabetes supplies that had become a physical part of the landscape after so long.  And the cabinet which once housed hundreds of dollars’ worth of Diabetes supplies is now used for drinking glasses.  As I grab a coffee mug for my tea, Adele stumbles out of bed with the brightest smile on her face.  I no longer have to remind her to test her blood sugar before breakfast.  Her half empty purse sitting on the table no longer contains her blood sugar tester and fast-acting sugar.  The food scale that used to live next to the coffee machine now lives in the cabinet since it is very rarely used.  The kitchen seems much more spacious, almost empty. 

As Adele makes her own breakfast, we just see food.  This food seems much more appealing without the numbers.  It’s like being in a different dimension.  Everything has changed. 

I feel like I am now on a permanent vacation even if I am not even close to retirement still working full-time.  I can’t really explain the feeling.  The best analogy would be like instantaneously being transported from a noisy, crowded city street in a huge city to an empty field out in the country.  The sudden silence would make the peace and quiet very noticeable thus heightening everything else like the feeling of the sun on your face, the warm breeze on your skin and the sound of birds chirping.  Even the smells would be amplified.  The empty space and silence would make everything feel so real, yet almost surreal.  Like a dream. 

Adele’s finger tips are starting to heal.  The scars from hundreds of thousands of finger pokes will always be there, but she notices that they feel different.  She is slowly beginning to regain her ability to feel what she touches.  And she no longer hooks her insulin pump tubing on the cabinet knobs or bangs her infusion site since she no longer needs to wear the pump.  She notices its absence in the little things like while getting dressed or while showering. 

The emptiness in my mind feels strange at first.  It’s like I now have access to everything else that was hidden behind the constant worry, analyzing and thoughts involved in being Adele’s pseudo pancreas.  So many things that I had forgotten were there suddenly come up to my mind’s surface.  The closure is liberating beyond words.  The simplicity brought back into our lives is simply amazing.  I feel like an incredible weight has been lifted from my shoulders. 

A part of me that had died has been resurrected.  This one thing has changed everything. 

Often, when I can’t sleep, I dream of how things will be and how I will feel when my dream of a cure for Type 1 Diabetes comes true.  I try to allow myself to truly and fully feel what it will be like.  I imagine the small details, the good stuff.  And that’s when I usually end up falling asleep.   

I can’t wait to wake up one day and realize that this dream is no longer just a dream...

Thursday, February 19, 2015

Waking up to a mess on the kitchen counter…

I'm not sure why but being the first to wake in our house, I immediately clean up all evidence of nighttime lows.  I quickly wipe the spilled juice, recycle any empty juice boxes and clean up consumed food wrappers before doing anything else as soon as I enter the kitchen.  Last Monday was such a morning.  A measuring cup, an empty juice box, scissors used to quickly get to the juice instead of using the awkward straw and an empty gluten-free chocolate cake wrapper.  All of these reminders were really not necessary given my extreme fatigue.  It was evident that we hadn't had a good night.

Like every single night for the past 12 years, I had done the “gut check” before being able to fall asleep.  This method is part scientific and part just going on feeling.  The scientific part involves math to calculate insulin on board, but there’s also analyzing trends in the last few hours and using a parent’s intuition.  To be honest, it’s really just an educated guess and dealing with puberty for the last while, the guessing has become a bigger part of the final decision.  Our experience has been that a teenage girl’s raging hormones have a HUGE effect on blood glucose levels.  I screwed up this time.  I know that eventually, it's inevitable that you're going to screw up playing this game. It still doesn’t help alleviate the pain and fear when dealing with nighttime lows like these.

At 10:15 pm, Adele's blood sugar was 8.3 (149) slowly coming down from 9.2 (166) an hour earlier.  In my mind and in my gut, I confidently thought we were good and allowed myself to fall asleep.  Less than 2 hours later, I violently jump up in bed after hearing Adele crying and shouting “PAPA!!!” telling me that she felt low.  She very rarely feels her lows during the night, but this time luckily she did.  I jumped out of bed in a panic and immediately knew that she was low.  She was crying, sweating and evidently not well.  I tested and was already in the kitchen getting much needed sugar ready when I saw the 2.4 (43) appear on the meter.  She drank a juice box, ate a gluten free chocolate cake and instantly seemed much calmer as if her body was in a state of euphoria just having received the sugar that it needed to sustain life, but she also still looked quite unwell since the sugar had not yet reached all cells in her body that were literally starving to death.  She looked at me and made me realize how vulnerable that she is.  Inside I felt quite emotional.  I felt helpless.  I felt like crying.  I felt relieved and very grateful that she had woken up since too many never do.  I also really felt bad for her that this is her life.  She did not do anything to deserve this life.  These are the times where Type 1 gaming really hits home.  Sadly, episodes like these usually happen behind closed doors when no one else is looking.  Type 1 gaming is a very lonely game at times.

 I’ve been working on accepting this life for her for the last 12 years and on good days I’m pretty good I think, but every once in a while Type 1 Diabetes reminds you that it’s always lurking, ready to bring you down when you’re not paying attention.

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 ( and  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


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...

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.

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…


*Photo by Don Ricker photography