So what are YOU doing tonight?

The last thing that I do before going to bed each and every night is check Adele’s blood sugar. She always sleeps through these night time checks. Looking at the result as well as considering the amount of active insulin and prior blood glucose values, I make a decision to either do nothing if the values are “normal” and relatively “stable”, give her an insulin bolus to bring down or prevent a high, reduce basal insulin temporarily to bring up a lower value and/or give her a bit of sugar. She has developed the reflex of eating gummies while sleeping when we put them in her mouth.  Adele doesn't wake up if she goes low during the night, which is very, very dangerous.

I also need to “guesstimate” what time she will be getting up the next morning. Her basal insulin settings are set so that she receives more insulin 1 or 2 hours before waking. This is to prevent the “Dawn phenomenon” (tendancy for blood glucose levels to raise in the morning even without eating) and to give her a “head start” insulin-wise before her breakfast to try to avoid a post-meal high. The tricky part of this is that if she sleeps in, the higher insulin basal rate can cause her to go low. On the weekends, I set the higher basal rates later to avoid this. Sometimes it works like a charm, other times it doesn’t. This is not unusual, it’s just part of the game…

I then set the alarm for the nightly blood glucose check usually around 2 am or sooner if I’m not comfortable with waiting that long. I can then go to sleep.

My wife wakes up for nightly check, tells me what Adele’s blood glucose is and based on where she was at the last check before I went to bed and if she has any active bolused insulin, I tell her what to do (either nothing, insulin bolus to correct a high, lower basal rate and/or gummies to bring up a low) and then we go back to sleep…

And this is every single night… Weekends, holidays, birthdays, anniversaries, camping trips, sleep overs... are no different.

Some parents complain about nightly feedings with a new born. Those are only temporary.  Nightly Type 1 gaming activities are for life…

Type 1 Diabetes for dummies

Type 1 or Juvenile Diabetes is not caused by diet or lifestyle.  It cannot be prevented.  It's an auto-immune disease that occurs when the body's immune system malfunctions and mistakenly destroys the cells that produce insulin. 

Juvenile or Type 1 Diabetes usually strikes children and is different from Type 2 in that it can never be controlled by diet and lifestyle alone.  Since the insulin producing cells are dead, all Type 1s NEED to inject insulin to stay alive.  Insulin cannot be taken orally, it must be injected multiple times per day or continuously via a catheter inserted into the skin attached to an insulin pump.  Without injected insulin, the Type 1 diabetic would eventually slip into a coma and die.  This was always the outcome before the discovery of insulin.

Injecting synthetic insulin to replace the insulin no longer produced by the pancreas is the easy part of the Type 1 diabetic treatment.  Along with the destruction of the insulin producing cells in the pancreas, Type 1 diabetics also lose the very complex ability to maintain normal blood sugar concentration.  Every minute of every day, the non-diabetic body is automatically making tiny adjustments using various hormones...etc... to ensure that blood glucose (sugar) values are in check.  This is no longer the case in a Type 1 diabetic who has to try to manually maintain these blood glucose values as close to normal as possible.  Insulin and food are only part of the blood glucose balance equation.  Everything from nervousnous, stress, fatigue, physical activity, viruses...etc... affect blood sugar.  This makes the task of normalizing Type 1 blood sugars very difficult if not impossible.  Even if you do everything right there will be times when your blood sugar is either too high or too low...  And then there are the very scary low lows like this one.

So now, without a healthy pancreas to normalize blood sugar levels, the Type 1 diabetic is at risk whenever these levels are out of range.  Even with "good control", blood glucose values are out of the normal range often (daily or even many times during each day).  Too low could lead to a seizure or even death.  Too high will lead to long term complications such as retinopathy, amputation, kidney failure...

Insulin is by no means a cure.  It keeps the Type 1 diabetic alive and has made the disease no longer terminal, but it still is only one piece of the puzzle required to normalize blood glucose.

Out of hiding...

This blog is not dead. Let’s just say that it has been “hibernating”. My gaming strategy as of late has been acting and reacting and not so much analyzing. I’ve just been taking care of things without analyzing why or why not. I’ve been following the old Nike mantra “Just do it”.

It’s funny, because I can take a break from blogging. I can disappear from this virtual world whenever I choose to and for non-gaming followers, Type 1 Diabetes also goes away whenever I do. For gamers, it’s always there… We still deal with high blood sugars that don’t seem to want to go down even after you do everything right. We still deal with lows that make Adele feel all oozy and we still do multiple blood sugar checks throughout the day and night… every single day… and night.

As we’re getting closer to the 9 year anniversary of Adele’s diagnosis, I seem to be closer to accepting the diagnosis. What other choice do I have? But with this "acceptance" there also seems to be less motivation to keep working towards the search for a cure. I have noticed that for most Type 1 gamers, the energy put into Type 1 awareness and fundraising is inversely proportional to the number of years of Type 1 gaming. I don’t want it to be this way for myself.

In a few weeks, I will again be riding my bike as part of the national Cyclebetes relay to raise awareness and research funds for the Juvenile Diabetes Research Foundation - JDRF.  In support of this, my posts will be back to the basics, explaining what Type 1 Diabetes is and what it entails.  We need a cure and hopefully my upcoming short and to-the-point posts will help explain why.  Stay tuned...

My return back to the living part deux

Yeah, I know, it's been a while.... Since the last post, I got sick again (another strep and more antibiotics), I was off work for close to 2 more weeks and then we were away on vacation. I'm very fortunate to have been able to go south and escape the Canadian snow for close to 2 weeks, but aside from that it has been quite a rough winter. It would seem that as much as I try to embrace our winters, my body is just not optimized for the task.

I have come to admit that a major part of this physical downfall is simply burnout from Type 1 gaming. Since Adele’s diagnosis in October 2002, I had been fueled by anger and panic, but it seems like this energy source has run out. The passion is still burning, but the flame has become quite dim. I’ve constantly felt a sense of urgency to do all that I can to accelerate the cure that everyone has been talking about for so long and make this whole thing just go away. But these past months, some days I’ve just had enough energy to simply go through the motions. Giving up is not an option and there are no vacations from Type 1 gaming so I must keep pedaling.

As I am beginning to feel better again, I keep asking myself “So, what now?” If I don't change anything, will I find myself again in the same spot in the near future? I'm not sure how to live with less intensity.

Our family vacation to Florida was very, very enjoyable even if it wasn’t a vacation from Type 1 gaming. A backpack full of supplies followed us for the entire 12 days. You have to be ready for anything and everything. Insulin, syringes, infusion sets, test strips, lancets, Dex 4 glucose tablets, spare pump… were part of our mobile pharmacy. Adele’s continuous glucose monitor (CGM) proved very useful to help keep her numbers in check, but we still had lots of ups and downs including a 1.8 (32) blood glucose when we landed in Toronto. Crap! The attendant asked us to leave the plane, but we had to treat this low. Yup, I was resisting playing this game at that point. What is it with flying and lows? We don’t fly enough to be able to figure out a pattern, but it seems that as the altitude drops during the landing so does Adele’s blood sugar.

Attending our local JDRF Research Symposium last week definitely also helped to re-ignite my passion. Even if my hopes of seeing a cure in our lifetime are diminishing the more that I learn about this complex disease, the possibilities that can potentially help Adele live a full life are continuously growing. I have now accepted that the odds are very high that her life expectancy will be shortened by Diabetes. I am however encouraged by the fact that JDRF research is constantly making improvements on treatments until a cure is found. As much as I don’t always feel that pharmaceutical companies have our best interest at heart, I do feel quite the opposite about JDRF researchers.

I came out of the JDRF Research Symposium with a much-needed renewed sense of enthusiasm and confidence. The guest speakers were amazing, especially Chloe Steep (www.connectedinmotion.ca) and Dr. Sanjoy Dutta who talked about the artificial pancreas program. Dr. Sanjoy explained the different generations of the artificial pancreas treatment system starting with a CGM that sends a signal to an insulin pump to turn it off when blood glucose goes low (basically a hypoglycemia minimizer system) to a fully automated closed loop system where an algorithm automatically determines insulin dosages to be delivered by an insulin pump without any human intervention. Even if such a system is relatively close (or much closer than a cure in my opinion), there are still many technological improvements necessary before it becomes an available option such as the need for faster acting insulins and more precise CGM sensors. And then there are the hormones that normally work with insulin to control blood glucose (such as amylin and glucagon) that are mostly ignored in the current conventional Type 1 treatment plan. Even with these improvements, Dr. Sanjoy said that it would still not be possible to create an artificial pancreas that worked as good as a healthy, non-diabetic one. It wouldn’t be a cure, but a better treatment. I say we’ll still take it !!

Cooked but hopefully not burnt...

It’s 3 am and I’m sitting on the couch with my head tilted forward. I had slept for about 2 hours when I woke up with a splitting headache. Lying horizontally creates just way too much pressure in my completely stuffed sinus cavities. Every single part of my body aches and I dread taking another drink from that glass of water beside me since swallowing is just so damn painful. And the swollen glands on each side of my neck are huge and sooo tender. The doctor diagnosed it as viral so I guess the only thing to do is let it run it’s course.

My body is talking to me. Actually, it's more like a violent scream. And I can’t not listen. I also can’t stop thinking about ‘Diabetes Burnout’. In our 9th year of playing this game, what if I just can’t do this anymore. That isn’t really an option, but when the body stops cooperating with the mind there is no other choice. That scares me.

A few days later, a phone call from the doctor’s office confirms a Strep throat and so ended my nearly 8 year streak without antibiotics. Slowly I begin to feel better and come back to life. I need to put much emphasis on the ‘slowly’. I can’t remember a flu / infection that took so much out of me. Again, is it age or the fact that I'm quite cooked?

So now, a few weeks later, I’m still seeing slow but sure progress. I’m back to work, skiing, playing hockey, going to the gym and riding my bike on the indoor trainer. And I’m also trying to figure out the message that my body has given me. I'm trying to figure out how I can continue to be Adele’s pancreas and not destroy myself in the process. I’ve started with trying to get more sleep. This is not always possible while playing the Type 1 game, but when blood sugar numbers are fairly stable with not much insulin onboard, I’ve been accepting these gifts from the Type 1 gods and hitting the sack early.

Even if my intentions are good, I realize that I’m still resisting this Type 1 life that we’ve been imposed. I know I need to let it go, to accept it for what it is, but I’m really having a hard time doing that… even if it has been over 8 years since Adele’s diagnosis. How long is this going to take? Will it ever happen? Is it even possible?

So now it’s time to get back to basics, to try to start living in the NOW more and more. I know this, but still cannot seem to put it into practice enough. As much as my mind is a useful tool for Type 1 gaming, I must not forget that it is just that, a tool. Like any other tool, I must learn to use it and then put it away, just turn it off. Too often, I am a slave of my thoughts, controlled by the what ifs and waiting for certain things to happen to make me ‘happy’. But the future does not exist. It’s just a bunch of stories that we make up, scenarios, often worse case, that we imagine. The only thing that is real is this precise moment. And that’s the only place where we can be ‘happy’. If I can even conserve even a fraction of the energy that I have been wasting while not being present, I will have made progress. That is the goal.

I really think that my body has been telling me that it needs a break. Type 1 gaming itself is 24/7 with no breaks whatsoever. Add raising awareness, fundraising...etc.. and it's no wonder that it can just become too much. So I guess that it's time for me to go to the back of the pack and sit in the draft for a bit to recover and get ready for the next pull...

My letter to Santa

Dear Santa,

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

That’s it.

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 !
Mike

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…

Refocus

Sitting in a work meeting, my focus begins to wander. New work policies and developments are being communicated and debated, but my mind keeps drifting. No one seems to notice that even though I am physically there, my attention is not. Adele being at school and me at work, I don’t have any physical signs that her blood sugar is okay. I can’t seem to get rid of this uneasiness, but I need to refocus on my meeting...

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.

When living is about... not dying

Adele was just sitting there asking me why everything felt and looked so weird. She kept trying to explain to me what it felt like to have a blood sugar of 1.3 (23) while my wife and I were shoving juice, Dex and gummies into her mouth. I kept telling Adele to just eat and drink even if deep down I couldn’t stop but think that she was trying to explain to me what dying felt like. I was trying to not throw up, hoping that the ingested sugar would reach her bloodstream before her nervous system decided to shut down and enter unconsciousness. She had only been sleeping about an hour and was dropping fast, 2.5 (45) 10 minutes earlier and 9.0 (162) an hour before that. It’s just not right for a 10 year old to go through something like this. It’s not right for anyone to go through something like this.

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.

An outreach

Dear local family of the newly diagnosed 4 year old boy,

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 (velo_mike@hotmail.com) if you want to chat or setup a meeting. Our family would be more than happy to sit and talk.

Sincerely,

Mike

The "Solution" ?

Is it really possible for a Type 1 Diabetic to have the same blood sugars as a non-diabetic? When Adele was diagnosed, I remember the doctor telling us that there was currently no cure for Type 1 Diabetes, but that it was “controllable”. Today, I would have to disagree. Our experience has been that it’s “manageable” at best. We actually often feel out of control.

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…

Resistance training

As human beings I’m not sure if our tendency to resist is a defect ingrained in our DNA or something that we learn? For me, resistance is felt as a certain muscle tension with the unconscious belief that I can prevent or undo certain events or circumstances using my own personal muscular strength. Kind of like holding or catching an object to prevent it from falling. My resisting mind sounds like “No, this can’t be happening” or “Why do things like these always happen to me?”. It is also recognizable by a certain tightness in my hamstrings, shoulders and neck.

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.

RESIST NOTHING.

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...

World Diabetes Day

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.

Is this as good as it gets?

Summer 2010 is long gone. I’m not sure where it went, but suddenly it was Halloween. The fall season brings cool temps, less daylight, less time on the bike and more time online. Which means that hopefully the blog won’t get neglected as much. Often, I would have time to update, but don’t unless I have something relevant to say. Today, the voice inside my head is inspired, so here goes…

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?

It's easy to judge...

Please don’t judge our family based on how we choose to play the Type 1 game. Please don’t tell me that 12 or more blood glucose checks during a school weekday is too much. Please don’t tell me that talking with Adele’s teacher’s aid and daycare caregiver 7 or more times per day is unnecessary. Please don’t tell me that getting up to check Adele’s blood glucose at least once every single night is too much. Please don’t tell me that driving to Adele’s friend’s house at 2 am to check her blood glucose during a sleepover is ridiculous. Please don’t tell me that we’re hovering too much and should let go. Please don’t tell me how other gamers don’t test as much and still “seem to be doing great”. Please don’t tell me how easy another gamer finds playing the Type 1 game and how perfect their numbers are. Please don’t minimize what we go through each and every day to keep Adele alive. I’m not looking for pity. I’m just asking you not to judge.

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…

Walking around in our shoes…

In less than 1 month, on November 1st, we’ll “celebrate” our 9 year Type 1 Diabetes diagnosis anniversary. We’ve come a long way since then. Our life is now an illusion in that it appears normal, but in no way has it become the way it once was. Type 1 Diabetes does not become easier to manage, you just get a bit better at it and a whole lot better at creating the appearance of being normal and having everything under control, but in reality you’re pretty much just winging it playing a game where the rules are constantly changing.

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….