Monday, December 20, 2010
I know it’s been a very long time since the last time that I’ve written you a letter. I figured that you were quite busy with all of the other letters that you get each year and since I really didn’t want anything specific for Christmas, I thought I’d give you a break and let you concentrate on the other kids.
But this year, I feel the need to write again. It started a few weeks ago when we saw you at the Santa Claus parade. I glanced over to get a glimpse of Adele’s face when she saw you go by. Her beautiful eyes lit up with excitement. Everything was just perfect except for one little thing. For most people this thing often goes un-noticed, but for us it’s always there.
My list is very short. It’s actually only got 1 thing on it. Yeah, I know, most lists that you get have much more than 1 single wish. Hopefully, since mine is so short, I’m hoping that you’ll be able to deliver. It would mean so much to me and our family.
You likely mostly get requests for bikes and video games. Even if those things are cool, it’s not what I really, really want. The other day I came across this beautiful house on the top of a picturesque valley. Most people my age work very, very hard and make a lot of sacrifices each and every day of their whole lives to some day call such a house their home. Even if you were able to give me the keys to such a house and even fill it with all the latest gadgets, luxuries and bikes, it still would really not make me any happier because it’s still not what I really, really want.
Also, if you deliver on my request, I promise that I won’t ask for anything else for at least another 10, 20 years or even for the rest of my life. Promise.
So here it is. Here’s my list.
A cure for Type 1 Diabetes
I know it’s a tall order, but remember that it’s all I’ve really asked for in the last 25ish years and I won’t ask for anything else in the next 10, 20… Promise.
So hopefully the elves will be able to come up with a cure. Please check with JDRF (the Juvenile Diabetes Research Foundation). I’m pretty sure they have some ideas that the elves can use to help them out.
You can leave the cure medicine and the instructions under the tree and if you leave lots, I’ll share it with all of my friends that also need a cure. This would definitely be the most absolute best gift ever !!
Thanks and Merry Christmas Santa !
PS – We’ll leave you a glass of milk and some gluten-free cookies. I hope you enjoy them. Oh yeah, and a few carrots for the reindeer…
Monday, December 13, 2010
I keep looking at my watch wondering. Over 2 hours since her breakfast insulin bolus, how much of that insulin is still actively working? I try to do the math in my head. She had dropped significantly in the third hour after breakfast and had gone low the day before, will she do the same today? She was a bit high at 9am when I spoke to her teacher’s aid and I had corrected, but did I over-correct? I am still not convinced, but then again I remind myself that I need to refocus on my meeting…
I had stepped out of the boardroom when Adele’s TA had called at 9am, but mentally I was still in the meeting. I had listened, calculated and told the TA to tell Adele to give herself 0.5 units of insulin. It was a quick decision. It had to be and now I was second guessing myself. What if Adele’s blood sugar is dropping too fast? She doesn’t always recognize her lows. Again, I try to refocus on my meeting…
It’s scary to think of the reality of a Type 1 gamers responsibility of calculating insulin dosages without the medical training of a doctor. And the fact that the repercussions of a mistake could be fatal. I then tell myself to not go there and refocus on my meeting…
The thing with calculating insulin doses is that yes you are using mathematical calculations, but in reality it’s nothing but a slightly educated guess. When someone asks me if Adele’s blood sugar will be good for the next few hours, I can never, ever be absolutely certain that it will even if we do every single thing that we’re supposed to. Especially since the severe insulin reaction last week (http://thetype1game.blogspot.com/2010/12/when-living-is-not-dying.html). Unexplanable highs and lows can and do happen at any time. You just hope that you can catch them in time.
Adele can eat the exact same food, receive the exact same insulin dose and have the same activity level on 2 consecutive days with different blood glucose level results. That’s all part of the Type 1 game. There are just too many uncontrollable variables in the blood glucose balance equation.
I eventually made it through my meeting. Adele’s blood sugar was 8.2 (148) at 10:20 am before her snack. A bit high, but not the low that I was worrying about. After a few days of this pattern, a bit more insulin after breakfast seemed to be what it took to keep her in range, until a few days later when it became too much and she dropped to 2.3 (41) before her morning snack at school.
Adele doesn't deserve to live this life... She didn't choose this. I'm tired and beat. But I can't go there, again I remind myself to refocus.
Monday, December 6, 2010
How could I have let this happen? A stubborn high that didn’t seem to want to come down (until now), a very light bedtime snack, a new infusion site, a basal set too high, a sudden increased insulin sensitivity, a Continuous Glucose Monitor vacation and a temporary loss of focus are some of the causes that come to mind. We had lost ourselves while decorating the Christmas tree and then while watching a movie. We had enjoyed this special family time together a bit too much. I should have seen this coming, but I didn’t. I just felt like crawling under a rock and dying… I felt like giving up. But I can’t. Like with every other close call, I need to dust myself off, refocus and keep going… for Adele, for our family and for myself. I need to regain the confidence that was lost.
I think it took about 60 grams to rescue her from a certain death. It may have been a little more or a little less? Whatever amount it was, as expected, it turned out to be too much. Two hours later at 1 am she had shot up to 18.2 (328). A very conservative correction brought her down to 14.1 (254) two hours after that at 4 am. I gave her another small correction and set the alarm clock. She had gone down to 9.0 (162) at 5:30 am and woke up at 8:30 am at 6.4 (115). At least it was Sunday and we didn’t have to go to work.
Even if the rest of the weekend was also full of rides on the “glucose rollercoaster”, Adele told me Sunday night that she had an awesome weekend. I guess it’s all in the perspective. Thanks for teaching me so much Ad…
Yesterday I wasn’t sure if I wanted to share this here. It seemed too personal and I was not looking for pity. I just wanted to put it behind us and move on. But then I realized that sharing stories like these are why I started the blog in the first place. This is our life. If it makes even one person realize the seriousness of the disease prompting them to support JDRF in it’s search for a Type 1 Diabetes cure, it’s well worth sharing.
Tuesday, November 30, 2010
I don't know you, but I do know what you're going through right now. A Type 1 Diabetes diagnosis is quite a blow. I remember being totally devastated when Adele was diagnosed. Any diagnosis described with the word "chronic" or followed by the phrase "there is no cure" is something that everyone wishes that they'll never hear. It is a loss that needs to be mourned. It is okay and very normal to feel the way that you do...
Even if your son's life is no longer the same, there will eventually be some good that will come out this hardship. It's very normal if you cannot see this right now, but someday I really hope that you will. He will adapt to the needles and to his new way of life and he will be okay. He will grow up to be much more compassionate and appreciative of the blessings in his life.
Adele was 2.5 years old when she was diagnosed and now over 8 years later, she doesn't even remember what her life was before Diabetes. It's simply part of who she is and in her mind who she has always been. She can play whatever sports that she chooses just like her friends. She runs, plays, dances, rides her bike, skates and really enjoys life. The needles, site changes and blood glucose tests are now just part of what she needs to do, merely a task that needs to be taken care of just like homework, getting dressed in the morning and brushing her teeth. Her friends are very supportive. Like other kids, she's resilient and so is your son.
If someone would have told me 10 years ago what my life would be like today, I would have told them that there is no way that I was capable of managing it all. But today, I am living this life. I am indeed stronger than I ever thought I was. As much as I wish that this Type 1 Diabetes thing would go away tomorrow, it has molded and transformed me in ways that I could never have imagined. Connecting with Type 1 families, getting to know other parents of Type 1 children through my blog as well as support groups continue to help me cope. It doesn't fix anything, but it does make me feel better knowing that we're not alone.
Don't hesitate to reach out and try to take things one step at a time. Diabetes is a very technical disease so give yourself time to continue to learn. I know that there's really not anything that I can tell you right now to make things better, but just hang in there... things will get better and you will get through this.
Please send me an email (firstname.lastname@example.org) if you want to chat or setup a meeting. Our family would be more than happy to sit and talk.
Wednesday, November 24, 2010
Coming back to my initial question, what level of blood glucose control is possible for a Type 1 gamer? Is it really possible for a Type 1 gamer to normalize their blood sugar? These are big claims made by a controversial US doctor by the name of Richard Bernstein.
I'm always reluctant when I hear of miracle cures and treatments that seem to good to be true, but I also don't like to simply sit and not look for something better for Adele. For this reason I just had to order Dr. Bernstein's Diabetes Solution book. He is the first doctor that I've ever heard suggest that Type 1's CAN normalize their blood sugar. He was one of the first to discover the benefits of blood glucose self-monitoring. He was diagnosed with Type 1 Diabetes at the age of 12 years old in 1946 and is still alive and well practicing medicine. His theories are far removed from what we were taught by our Diabetes care team upon diagnosis, but I still need to see what this is all about.
I have only started to read the book, so these are only my initial impressions. This will not be a book review or me trying to persuade you to go buy the book and throw your current gaming plan out the window. The purpose of the post is to share my quest for a "solution" and the importance of sometimes challenging mainstream conventional thinking. Here are a few points that attracted me to Dr. Bernstein’s philosophy:
Dr. Bernstein's Diabetes Solution is based on a very restrictive low-carb diet. Since Type 1 Diabetes is a metabolic disorder where the sufferer cannot properly metabolize carbohydrates, doesn’t it make sense to avoid or restrict the cause of the problem: carbs? With Celiac disease, ingested gluten makes me sick. The treatment for Celiac disease is quite simple and logical, avoid gluten and stay healthy. And I am living proof that this Celiac treatment is highly effective. I feel great. When I adopt a diet that works WITH my body instead of against it, I minimize stress and maximize health. Shouldn’t diabetics also adopt a diet that works WITH their body instead of against it?
For us (and many other Type 1 gamers), low blood sugars often happen a few hours after a big meal. The bigger the insulin bolus to cover that meal, the faster the blood sugar can potentially drop. I know that there are different techniques that try to fix this problem, but how often do they really work like they should? Simple math tells us that by reducing carbs, you reduce the insulin bolus to cover them and also reduce the severity of making a mistake. Being off by 10 or 20% is much greater when dealing with big numbers compared to smaller ones. Again, simple logic that just makes sense.
After over 8 years of Type 1 gaming, there is no doubt in my mind that it is just not possible to be able to eat what you want, when you want and still maintain your blood sugar in range all of the time like in a non-diabetic with the gaming tools that we currently have at our disposal. There are just too many variables. But is low-carbing the solution? It’s a touchy subject. Some just don’t believe it to be a healthy alternative while others simply cannot live without the pleasure of enjoying foods rich in carbohydrates. If it were me, I would definitely give it a try. But on the other hand, if someone told me that if I kept on biking that it would eventually have a negative impact on my health, I’m still not sure I’d be willing to give it up.
Dr. Berstein’s “solution” may or may not also be our “solution”? I don't know, but I do know that I am commited to keep looking.
Incredible things often happen to those who are just too stubborn to stop searching for something better. Dick Hoyt knows this. What would have happened if Dick had listened to the doctors when they told him that his son Rick, who was born with Cerebral Palsy, should be put in an institution since he would never speak or walk and would be a vegetable for the rest of his life? You may have already heard about the story of “Team Hoyt”? If not, I hope that this video inspires you as much as it does me…
Monday, November 15, 2010
Events that trigger unpleasant feelings are inevitable in life. Tragedies, death, pain, suffering, disease are all part of living. Even if we put all of our time and energy into resisting such events, it will not undo them. Resistance won’t bring back the deceased, it won’t cure chronic diseases like Type 1 Diabetes and it won’t turn back time to enable us to change certain events that may have been preventable. Constant resistance WILL however eventually make us sick (or sicker) if it persists for too long. And it will prolong or simply delay the unpleasant feelings associated with the event. What we resist persists. Resistance is a defense mechanism that we use to try to avoid (or lessen) the unpleasant feelings that we are experiencing. The worse thing is when all of this resisting happens unconsciously. If we don’t know that we’re resisting, how can we stop? As soon as we start becoming conscious of it, we begin to let go. We begin to surrender to what is. And we begin the healing process.
Such powerful words that represent the beginning of the end of unhappiness. I’m trying very hard to burn these 2 words in the main part of my brain. For so long, I resisted playing the Type 1 game every single day. I cursed inside when I got a meter error during middle of the night blood checks. I resented doing site changes when our schedule was already full. I just hated doing blood glucose checks before outings when we were already running late. I got really upset when people just didn’t get it. And I still feel that certain tightness deep inside when I see a high number appear on Adele’s blood glucose meter.
After over 8 years of Type 1 gaming, I can’t say that I no longer resist playing, but it is getting better. I’m more conscious of it now and can more often turn it around as soon as I feel this resistance starting to build. The Type 1 task where this consciousness has helped me the most is during the middle of the night glucose checks. I just get up and do them. No questions asked. And if the voice inside my mind starts cursing about how difficult and unpleasant this whole process is, I just tell change the channel. And usually end up falling asleep much faster afterwards since I’m just taking care of Type 1 game business instead of feeling sorry for myself resisting what is and wishing that I could just sleep through the night like normal parents of a healthy 10 year old. In the end, once we become more conscious of our resistance, it then becomes our choice. Do we want continue to try to fight the powers of the universe or surrender to them?
I think it's time to start letting go and to raise the white flag. Sometimes "giving up" may actually one of the most constructive things that you can do...
Friday, November 12, 2010
Sunday, November 14th is World Diabetes Day (http://www.worlddiabetesday.org/).
What can you do to recognize this special day?
You can start by wearing blue. You can also tell your co-workers, friends, family and even strangers about World Diabetes Day and how an estimated 285 million people worldwide are affected by Diabetes, 5 to 10% of which is Type 1 Diabetes. You can tell them that every day, 200 children develop Type 1 Diabetes. You can tell them that children who develop Type 1 Diabetes did not do anything to cause it. You can tell them that without insulin that those children would die. You can tell them that Type 1 Diabetes cannot be reversed, outgrown or controlled by diet alone. You can tell them that Type 1 Diabetes is increasing in children at a rate of 3% each year and 5% each year in pre-school children. You can tell them that their children could be diagnosed with Type 1 Diabetes even if there is no family history. You can tell them that insulin is not a cure. You can tell them that even if Type 1 diabetics do everything right that they are in no way guaranteed to not get complications. You can tell them that the greatest fear for the parents of a Type 1 is for their children to not wake up in the morning (http://diabetesnewshound.com/type1/dead-in-bed/). You can tell them that most Type 1s look healthy on the outside, even if they’re not on the inside. You can tell them that we really, really need a cure.
All things equal, I can’t stop thinking how simple our life would be if Type 1 Diabetes went away tomorrow. To be able to eat whatever whenever and not have to think about it would be so liberating. To be able to turn off that never-ending process running in the back of my mind that is constantly calculating carbs, estimating insulin peaks and analyzing Adele’s current and future insulin – sugar balance would be such a huge weight off our shoulders. To be able to finally put an end to that continuous doubt and uneasiness associated with determining insulin dosages would be unbelievable. I cannot think of anything that I would want more that would positively affect our life as much.
If your life is not affected by Type 1 Diabetes, please appreciate this on November 14th and make a commitment to do your part, it doesn’t need to be much, but please do something to help raise awareness and accelerate the Type 1 Diabetes cure.
Sunday, November 7, 2010
The last few weeks have come with a lot of ups and downs. A Type 1 gaming strategy that had been working quite well for weeks wasn’t cutting it anymore. I can’t explain it. One day would be chasing lows, the next would be full of corrections trying to bring down highs and the next would be both combined. I cannot seem to find a pattern in it all and cannot pinpoint the cause. One day Adele would have Phys. Ed which would cause her blood glucose to drastically drop, the next day, the exact same routine and same foods wouldn’t be enough to bring down a high even after a correction.
We’re already using all of the best technology tools available with the pump, continuous glucose monitor (CGM), latest meters and fast-acting insulin. We can’t really be more vigilant than we already are with 12 or more blood glucose tests per day. Adele is an active child. She swims, dances, played soccer and seems to be constantly running around when she’s home instead of being glued to the TV or her video games, so we’re pretty good in the exercise department.
During periods like these, I always get quite discouraged. What if this is as good as it gets? The doctors keep telling us that we’re doing a great job, but are they missing something? Should we expect more? I have been warned many times that puberty is a difficult time in regards to blood glucose control with all of the raging hormones. Adele is 10 and a half, so this may be the culprit? Or maybe not? The only other controllable variable that I haven’t mentioned above is diet. Our stand on this has been trying to eat as much healthy whole food as possible and allowing the occasional “treat” like we would if she didn’t have Diabetes. I’m really trying to live more in the NOW, but I still can’t help to think about the future. “Is this it? Are we just supposed to accept it as such and ‘hope’ for a delayed onset of eventual complications?” Even with a "good" A1C, her blood sugar is still often out of the normal range. Adele is still my baby. As a parent, I want to do the very best that I can for her. Is there anything else that we can do NOW to help her live as long and healthy as possible?
Diet is very tricky. Restrict too much and it may trigger sneaking food, while adopting a standard North American diet filled with processed carbs would certainly isn’t the answer in my opinion. I have often thought that if it were me who had Type 1 that I would adopt a strict whole food low-carb diet. It just makes so much sense. Highs often happen after a high carb meal or snack and lows often happen when a huge insulin bolus to cover a high carb meal peaks. Small boluses to cover fewer carbs can only reduce these spikes and crashes. Again, it just makes so much sense!!
Talk is indeed cheap and I have a healthy pancreas so who am I to make a statement like this and never have to follow through with it? As an amateur competitive cyclist constantly trying to improve myself, I’ve already tried to limit carbs in the past (the "Zone" diet) to re-train my body to burn fat as fuel instead of relying mostly on carbs and have failed miserably. After a long bike ride, the craving for carbs is so strong that I just end up giving into it. I am very disciplined and yet I still could not follow through. Is it a built-in human flaw that causes so many people (not just Type 1s) to give into the temptation of highly processed carbs? Are we doomed to fail? But then again, why can some people stick with it? Dr. Richard Berstein has proven with his strict Type 1 management plan including restricting carbs that it can indeed be done. He’s over 75 years old with close to 65 years of Type 1 gaming. He not only talks the talk but also walks the walk. How does he do it?
Wednesday, October 27, 2010
Since Adele’s Type 1 diagnosis 8 years ago, I have been fully committed to do every single thing that I can to be the absolute best replacement pancreas that I can be. Rather than wallow in self-pity, I choose to gain as much knowledge and experience as I can about Type 1 gaming. I choose to become passionate about the gaming process and the cause. I choose to see the glass as half full. I choose to see opportunities instead of obstacles. I choose to be part of the quest for a cure instead of just waiting for it.
Yes, I do realize that Adele will eventually be the one playing the Type 1 game. We believe that this responsibility should be given to her little by little with Adele leading the way, letting us know when she’s ready for more. We push a bit, but not too much. As she does take on more and more responsibility, I will always be there to support and guide her teaching her all that I have learned along the way.
The purpose of this post is not to brag about how good we are at parenting and Type 1 gaming. We struggle and just like other gamers who were unwillingly thrown into this Type 1 ocean, we’re really just doing what we can to stay afloat.
The role of a parent of a Type 1 diabetic child is so much more demanding than that of a “healthy / normal” child, but we must not forget to look at one of the by-products of the Type 1 game suffering which is the depth of the relationship that is created. I honestly believe that I would not have such a close relationship with Adele without Type 1 Diabetes. Choose to embrace playing the Type 1 game instead of resisting it. It’s one of the only things that we can control…
Friday, October 1, 2010
After almost 9 years, I still cannot say that I have fully accepted this diagnosis. I really miss the time before Type 1. I can still remember how it felt to be able to just be…. And I still really miss it. Type 1 Diabetes is a chronic disease for which there is currently no cure. Going through the motions sometimes we tend to forget that. We correct the highs and treat the lows like it’s just a normal part of life. It is for a Type 1 gamer, but it still isn’t “normal”. Adele’s pancreas is broken and no matter how vigilant we are, we will never, ever be able to do as good a job as a healthy pancreas with the treatments available today.
So what are we to do? New treatments also come with new problems. Pumps need to be worn 24/7, infusion sites get banged up, kinked and infected, Continuous Glucose Monitoring systems are often not very accurate at measuring blood. All of these treatment options MAY help Type 1 diabetics who can afford them to achieve better control, but they add a whole level of complexity to their treatment. I realized how much specific knowledge was necessary to play this game when our pediatrician kept asking ME about Type 1 treatment (instead of the other way around). I can understand why certain Type 1 diabetics never evolve beyond injections. Why doesn’t everyone (including non-diabetics) exercise regularly and eat a healthy, balanced diet? Because it takes a whole lot of work and it’s just way more simple and easier not to…
The task of maintaining excellent Type 1 control and care is in reality an inhumane task to ask of someone. 24/7 constant blood glucose levels monitoring including nighttime checks, watching and counting every single bite of food consumed along with the necessary analysis of tons of numbers to make the changes in ratios and scales necessary to deal with the body’s complex chemical changes. All of this every single minute of every day with no vacation… Ever... A higher A1C results in a guilt trip that “we could have done better”. With Type 1 diabetes care, no matter how much you “take care of it”, it really is never good enough and can always be better. Then if or when complications arise, the uninformed lay the blame on the diabetic because he/she “didn’t take good enough care of themselves”. This is the reality that each and every Type 1 diabetic faces.
During our last clinic visit, Adele’s A1C had gone down again and was one of the best to date. Her body has been cooperating, but we’ve also been testing a lot to achieve this… Like 12 and up to 15 times per day. Is this vigilance too much? How long will we be able to keep this up? We could test less, but I’m 100% certain that her A1C will go up and that there will be many more dangerous lows that we may not catch or highs that we’ll struggle to bring down. There really isn’t a definitive answer to this question. In the end you do your best and what you’re comfortable with.
For a long time, I’ve racked my brain wondering if we’re hovering and testing too much, but now I just don’t care anymore. I’m tired of feeling guilty and second-guessing how we choose to play the Type 1 game. We’re doing the best that we can given our circumstances. We’re lucky to be able to be available during the day to work with Adele’s teacher’s aid to maximize her chances of maintaining blood sugar levels as close to normal as possible. To me every avoided out of range blood sugar is an investment in her long-term health even if it means another hole in one of her fingers.
Here are some of this morning’s game highlights:
7:10 am wake-up @ 3.7 (67) – a bit too low, she ate toast with peanut butter, banana and a glass of milk, this is a different breakfast than her usual cereal so I wasn’t too sure about how it would affect her blood sugar, we bolused conservatively with 0.9 units of insulin.
9:00 am between her first and second class @ 9.5 (171) – a bit high, but the rest of the week her sugar would rise a few hours after her breakfast cereal, but then crash so my best option would have been to test again after her 2nd class and see where her sugar was at, but I opted to go with one less test (finger poke) and waited to test again before her am snack.
10:20 am before her snack @ 13.1 (236) – too high = wrong answer, I failed the test. I am absolutely certain that an extra test would have avoided this high.
Tonight we will be inserting a CGM sensor as per Adele’s request. A sensor would have enabled us to see this high before it was too late and also saving her small finger tips from those extra pricks. Some times you win, some times you lose. Even your best isn’t always enough. So goes the Type 1 game….
Friday, September 10, 2010
At the end of your journey, you’re exhausted, but transformed and inspired. You’re so happy to sleep in your own bed and to see your family, but sad to leave your extended Cyclebetes family. Your butt is very pleased to not be perched on a bike saddle and your legs are happy to not have to turn pedals for a while. But you feel this powerful feeling deep inside that you made difference. You were part of a team with a very important goal: to deliver on a promise to cure Type 1 Diabetes. As soon as Adele jumped in my arms when I got home all the pain and fatigue went away and it was all so worth it.
There are times in life when it’s just gonna hurt… no matter what. So, you better make sure it’s worth it.
Wednesday, August 11, 2010
The race course was dry, fast, flowing and had a bit of everything to challenge cyclists of all levels. About 350 riders had made the trip to the Massuchusetts cross-country mountain bike championships on Sunday, August 1st in a small town called Oxford outside of Boston. As I lined up on the start line I had absolutely no idea where I fit in with my competition. It would all be sorted out in a few minutes. The start was quite painful as usual. Eventually my body figured out how to deal with my effort and I settled comfortably in 3rd position in my age group at the end of the 2nd of 4 laps. Not long after that I heard someone come up behind me. As I glanced over my shoulder, I noticed his plate number: 424. He was in my category. We rode together for the next 1.5 laps. I’d distance myself from him in the technical sections but he’d motor back onto my wheel on the road sections. He’d never pass me. He just sucked my wheel. I managed to get away on the loose rocky climb and rode really hard to try to maintain the gap, but he eventually caught back up to me. Having burnt almost all of my matches trying to stay away, he passed me. In my lactic acidic spent state, I just sat up and gave up. I just let him go.
As I was cleaning up after the race I realized that even if I didn’t get to step on the podium that day, I still won. I carried on with passion and managed to find inspiration through pain and suffering. I managed to tap deeper into my unlimited energy supply (by the way, you too have one of these). I managed to avoid the temptation to just sit up and coast. I had fully and completely lived despite… I had practiced what I preach to Adele…
My 2010 cycling adventures are still far from done. There’s another very important date that has been circled on my calendar for quite some time now… From Saturday, August 14th to Tuesday, August 17th, I will be riding my bike as part of the Maritimes team in the national Cyclebetes relay to raise funds to find a cure for Juvenile Diabetes. During these 4 days, we will cover 1000 kms biking from Halifax to the Quebec border.
You can help me reach my goal by donating here:
Stay tuned for updates on my Cyclebetes adventures here on the Type 1 Game…
Wednesday, July 14, 2010
So, given this realization, do we still talk about a cure with Adele and hope that one day she will be free of this never-ending 24/7 struggle? Yes, we sure do. We don't tell her that someday she WILL be cured, but we tell her that it is our duty as gamers to do as much as we can to help make this happen. We want her to have confidence in the universe instead of being depressed and negative about her state. We talk about what we'd do if or when she's cured. We talk about how we'd celebrate and go on a dream vacation. She knows that it certainly won't happen tomorrow or maybe not even in her lifetime, but she still gets excited about it. Without this dream, all hope is lost. Yeah, we're definitely tired and we now realize that a cure is much more complicated than we once thought it was or that many often make it seem, but damnit we're not giving up, trying our best to enjoy the NOW and taking our responsibility as Type 1 gamers to raise awareness and support JDRF's dedication for a cure.
One thing that I thought of and appreciated at the walk was the feeling of normalacy with testing Adele's blood sugar in public. It feels good to be able to stop and test amongst people who get it. No one looks at you wondering what you're doing and Adele doesn't feel as self-consious since she is now the norm. Feeling understood is a good feeling. Talking to the father of a young Type 1 gamer, he told my wife that his daughter had just started playing soccer. He's at each and every one of her games, but he's really never seen her play. We understood exactly what he meant, but non-gamers may not get it. You see, the entire time that he is standing on the side of the soccer field he is wondering and worrying about her blood sugar level. He's looking at her face for signs of hypoglycemia, he's doing math in his head trying to predict when her insulin is going to peak, he's trying to convince himself that she's okay. I know exactly the feeling since I've also lived it many, many times. Others see a young girl having fun playing soccer while her Diabetes caregiver sees numbers. It's a constant struggle that is difficult to grasp unless you've lived it. People try to understand and be nice by asking how her control is and making assumptions that because we've been doing this for many years now that her "numbers have stabilised". We only wish...
Wednesday, June 23, 2010
Now, in my defense, all of this time that I spend on my bike is in fact not only beneficial for my mental and physical health but also to accelerate the cure. Even if it appears as a lazy way to update my blog, here's the press release for our Cyclebetes 200 ride as well as the national Cyclebetes relay. Like the past 3 years, I'm really excited about the ride !
Dieppe dad and avid cyclist Mike LeBlanc is delivering on a very important promise. “I am delivering a promise to my 10 year old daughter Adele who was diagnosed with type 1 (juvenile) diabetes eight years ago. I will do everything I can to help find a cure. Cyclebetes is an opportunity for me to combine two passions, cycling and supporting juvenile diabetes research. It makes me feel alive. It gives me hope. It represents taking a stand and making a difference. It enables me to meet and interact with positive do-something people. It inspires me to keep pushing. It makes me feel less alone. It empowers me and my family. I want to set an example for Adele I want her to see me throwing every bit of passion and enthusiasm I’ve got towards something so important”.
Cyclebetes Community Awareness Co-ordinator
Thursday, May 20, 2010
So now when I see the wheel in front of me pulling away during a bike race when my legs and whole body are screaming in pain, I think of Adele and of all that she must go through each and every day and I suck it up and pedal a little harder. I choose to push deeper into the pain. At least I have that choice...
Monday, May 3, 2010
So, we seem to have the day to day details dailed in for now. What about the future? I've been thinking about Adele's life when she grows up as a Type 1 diabetic. How will she deal with all of this extra day to day Type 1 work on top of everything else that she'll need to do like work, meeting deadlines, career, family...? At 22 years old, she'll already have 20 years of Type 1 Diabetes. Each and every day of Type 1 gaming takes it's toll on the player's health. You have an organ that no longer works, so the game consists of trying your best to do the job that the organ (pancreas) once did. Artificial organ functionality is never as good as the real thing. Each minute that blood sugar is out of range brings us one step closer to complications. Insulin, along with all of the latest available technology, is not a cure, it's life-support.
So that's my new challenge, to develop a new habit of 'just being' more often... I invite you to give it a try as well... and let me know how it works out.
Tuesday, April 27, 2010
Adele's last Continuous Glucose Monitoring (CGM) sensor only lasted 3 days. It was inserted into her buttock and she was begging to take it out after 3 days because it was very, very itchy. The skin surrounding the insertion site was very red and inflamed. After trying to convince her to leave it in since it was working well, we gave in and let her take it out. After all, it is her body and she's the one who has to wear this thing 24/7. She doesn't have a choice with the insulin pump infusion site unless we go back to multiple daily injections, but she can go without the CGM. This was last Thursday. We wanted to insert a new one for our busy weekend, but we just couldn't seem to make the time for it. Adele insists on freezing the skin with the emla cream before the insertion (this takes like an hour), then the system needs to be calibrated... Anyway, we were running with our eyes closed, back to making dosage decisions using finger prick results only.
Saturday morning was the first swim of the spring session. Adele now swims from 11 am to noon instead of 10 am to 11 am in the last session. This means less active breakfast insulin on board and her morning snack an hour before getting into the water instead of a light snack right before swimming (yeah, I know that you're not supposed to swim until at least 1 hour after eating, but sometimes she just has to eat something to avoid going low). Swimming is a tricky situation. She's disconnected from her pump since it can't be submerged in water and I'm way up in the grandstands for the entire hour, so I can't ask her how she's feeling. A low is really not something you want to happen when she's swimming in 12 feet of water. I'm watching her like a hawk the whole time even if there's nothing I could do if I noticed that she was having a hard time staying above water except maybe shout at the teacher and/or lifeguard. Her sugar was 5.9 (106) when we got to the pool. 15 grams of carbs with no bolus and she was 7.2 (130) after the session, so we nailed it this time. I was still quite anxious during her class though, continuously trying to convince myself that my decision was correct.
That afternoon was the long-awaited meet and greet with Jason Earle (Jackson from the Hannah Montana show). During the 2 hour wait to see Jason, we tested to find Adele's sugar high at 13.8 (248) 1.5 hours after lunch. This could have been avoided with the CGM. We would have seen the rising sugar and could have corrected before it got this high. We corrected and she came down before supper. She was actually low at 3.6 (65).
The next day, she needed 45 grams of carbs prior to her swimming lesson. Her sugar before was 5.8 (104) and 6.4 (115) after, so again we were lucky to nail it. I figured she needed more insulin for her lunch given that the day before she went high, so I changed her lunch insulin to carb ratio. At 2:15 pm, just before going over to her friends house to play, her sugar was 9.8 (176). A tad high, but since she's going to be at her friend's house, on her own in regards to her Diabetes and without her CGM, I decided to not correct and wait and see in another hour. I called her at 3:30 pm and told her to test. She said that she felt low. She didn't feel it while they were playing on the trampoline (had I known that they were trampolining I would have called sooner!). So, I tried to remain calm and let her test. Her sugar was 2.4 Crap ! The CGM would certainly have caught this. I told her to sit down and drink a juice and take a Dex 4 tablet. This wasn't a problem since her body needed and was craving sugar soooooo badly. After her juice and sugar tablet, she said she still felt low and wanted to eat more. I told her to sit and wait for the sugar to enter her bloodstream and make her feel "normal" again. It's not always easy trying to reason with a 9 year old over the phone when every single cell in her body is litterally starving and in desperate need of fuel. When all was said and done, she had taken in 33 grams of carbs. A bit much, but I knew she was safe from the low. I told her that I would call back in 20 minutes to make sure she was okay. 10minutes later she called. She had tested and told me the result was 4.8 (86). She was good for now, but she would likely be high by supper without a bolus for part of the ingested 33 grams of carbs. I guesstimated 25 grams was enough to treat the low, so I told her to give herself a bolus of 0.3 units for the extra 8 grams. I was lucky in that it was the correct answer, her sugar was 5.0 (90) at 5 pm.
Close calls and constant changes are what playing the Type 1 game is all about... We inserted a new CGM sensor last night. It's been accurate so far and a little less scary to now be running around with our eyes open...
Wednesday, April 14, 2010
Our 1 year Continuous Glusose Monitoring (CGM) anniversary is coming up in about a month. The sensors seem to be getting more and more precise. This last batch seems to have about a 1 to 2 mmol/Ls (18 to 36 mg/dl) difference with the meter reading. It does however seem to have a harder time with quickly changing values as well as higher highs and lower lows.
Monday, March 29, 2010
I started this blog in 2008 to share what it really means to live with Type 1 Diabetes. I started it to share what it took to create the appearance of normalcy that most Type 1 gamers tend to project. I started it because there was no way that I could explain a Type 1 gamer's reality in a short conversation to someone who asked or to someone that I was trying to convince to donate and support the JDRF cause. The goal was to use it as a medium to express some of my innermost raw emotions. Hopefully some would relate and others would realize the importance of a much needed cure. I started this blog because I was no longer ashamed of playing this game.
I am not insane, crazy nor clinically depressed. I do however struggle with playing this game some times more than others. Blog posts during these times reflect these feelings. Expressing how I feel and spending some quality time at the gym, on my skis or on my bike enables me to re-establish balance during these hard times. It's a delicate balance, but it seems to be working for the most part.
I've met many, many extraordinary people through my involvement with the Type 1 community and JDRF. I've met lots of fellow gamers since beginning on this journey. I've met some gamers who have suffered a whole lot due to the physical ravages of the Type 1 game as well as others who have been gaming for a very long time without any long term complications. One similarity between those who have dodged problems are that they're constantly looking for better Type 1 game techniques and tools. They are not complacent to "just being" and accepting their fate of eventually becoming another statistic in the modern medicine database of diabetes related complications. They dare to challenge the phrase "It can't be done" or "That's impossible". They have the guts to charter the unknown Type 1 territory and simply ask "Why not?". I am inspired by these people. They give me hope. Like all great people who lived and changed our world before them, they dare to think outside of the box. They've taken their destiny in their own hands and have decided to go above and beyond what "normal" people do just because they've been told to or because they've always done it that way. So one of my goals as a father is to try to teach Adele how to enrich her life this way.
I feel cheated by modern medicine in a way. I feel that they are missing the boat in regards to the role of diet to better control blood glucose levels. I agree that the whole food topic is a delicate issue, especially when dealing with kids. If you restrict them too much, they're much more likely to overindulge once they're older and no longer under your constant supervision. But then on the other hand, they can't (or should I say "shouldn't") eat whatever they want whenever they want in my opinion. I would have liked it if we would have been presented with this reality when Adele was diagnosed and when she started pumping. I am 100% convinced that lower carb, whole food eating makes for more stable blood sugar and better control of Type 1 Diabetes. Why aren't more doctors preaching this? Is it simply an extension of our distorted concept of a "normal diet" in North America?
Those are my values and beliefs, now back to reality. Do I freak out and overreact each and every time Adele's blood sugar is out of range? No, I try my best to remain calm and make the necessary corrections. Do I totally ignore our doc's orders and start inventing my own Type 1 game rules? No, I follow our management plan all the while always looking for alternative tips and tricks. Do we only feed Adele lettuce and raw nuts? No, she eats "normal" (Gluten Free) food like most other kids her age, but we still take the time to discuss best food choices and try to give her enough information to be able to make good choices when she'll be the only one deciding what she puts in her mouth. Do we manage Diabetes or does it manage us? Is Diabetes in control or are we in control? I aim for more of a co-existance built on mutual respect.
Thursday, March 25, 2010
Friday, March 19, 2010
We've received the dates for this summer's Diabetes camp. I was really hoping that this would be the first year that Adele would go, but it's not looking so good. Actually, the idea is pretty much dead. I asked if a parent would be able to stay for the first night or if we could go pick Adele up so that she would sleep with us but the camp director said that wasn't possible. The only option is to drop her off and tell her "See you in a week". She really, really doesn't want to go since she rarely (ie NEVER) goes to sleepovers and she doesn't have any current friends at camp. I know that she would love it and make friends once there, but I can't go through the crying and screaming of forcing her to go and just leaving her there against her will. She goes through enough already because of the Type 1 game. Our only chance is one of her babysitters (who is also a Type 1 gamer) who is a camp counselor (or something like that?). If she would be there at the same time as Adele, then maybe (a big MAYBE) she'd be willing to give it a try. If not, we'll try again in 2011. Maybe the whole camp thing is us just being selfish wanting a week off from Type 1 gaming? Who knows?
Monday, March 8, 2010
For non-gamers out there, a popular analogy of what night time is like for a Type 1 gamer is the nighttime feedings that you go through with a young baby that persist beyond the baby years. I like to compare it to those nights when you're caring for a child sick with the flu. Times when you're planning to go to bed and you notice that your child is burning up. The last Tylenol dose isn't working anymore. You give some more but can't sleep until the fever goes down a bit. After all, such a high fever like this is dangerous and needs to be watched closely. You're worried that the symptoms will get worse and that the fever medication will be enough to keep the temperature down. If it does get worse, you know that it surely means a trip to the emergency room. You finally fall asleep exhausted, but quite uneasy because of the uncertainty in not knowing how your child's body will react to this flu virus and medication. You end up waking up a few hours later in a panic and can't get back to sleep without checking on the child to see if the fever has broken. You wake up the next morning very tired and go through the motions of starting your day...
Tuesday, March 2, 2010
Adele was diagnosed with Celiac disease and Type 1 Diabetes a few months apart when she was 2 years old. My wife naturally took the lead on the gluten-free diet by researching what she could and could not eat. I on the other hand was better with numbers given my education and work experience and I naturally took the lead on the Diabetes management. I make all of the changes in Adele's insulin pump basal rates and snack and meal time carb ratios. My wife applies the math based on the this plan. Adele's control is not perfect, but we seem to need to make many small adjustments quite often to help try to keep things in check.
I felt guilty that I wanted and needed a vacation from playing the Type 1 game since Adele can NEVER take a vacation from it, but I still felt bitterness and self-pity because of my situation.
I usually have a hard time watching any type of sporting event whenever Adele is around. She always wants to watch her "programs" on the Disney channel. But with the Olympics the past 2 weeks this was not the case. She was very, very interested. She was asking to watch every single night. She was asking all types of questions in regards to the games and I was taking advantage of this by explaining the various sports as well as what it takes to make it to that level (not that I personally know what it takes, but rather what I think). The very structured life of an athlete training for the Olympics is not very different than that of a Type 1 gamer. The athlete follows a strict schedule of sleep, healthy eating, intense training and sacrifice often including giving up the care-free adolescent years to follow your dream. I try to explain this to Adele because in essence it's very similar to playing the Type 1 game. All of these characteristics are what make a successful Type 1 gamer.
Last weekend, Adele and her mom went to Halifax with friends for a mini March break vacation. I didn't go since I had to work on Monday. On Sunday night, after the Canada versus USA men's hockey final for the gold medal, Adele called me. She wanted to tell me all that they had done during their first day in Halifax - swimming, shopping and gluten-free pizza supper. And she also wanted to talk about Canada's overtime win in the men's hockey final. She knew that I would have watched it and wanted to recognize the hard work and the "never give up" attitude that the players had to come up with the overtime win. That's when I realized that my "talks" were not lost and that what I have been preaching is really sinking in. Yes, as a Type 1 parent I am forced to never be far from her to keep her safe, but the result of this is a huge opportunity in helping her become the best that she can be. Type 1 Diabetes has prompted me to develop a closer relationship with her than if it wasn't part of our life. Adele told me that she is going to go to the Olympics when she grows up. She is going to compete in swimming. That made me feel really proud. Not because it's my dream that she actually does make it to the Olympics, but rather the fact that she has the confidence to believe that she CAN.
My cycling vacation to Virginia will have to wait for now, I'm still too busy shaping Adele's future... And to other Type 1 parents out there, your Type 1 kids ARE listening and all of the hard work that you're doing is WORTH it !