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.