Ski slopes and jelly beans

 

I’m not really sure how she made it down the hill. She was shaking and complaining that her ski boots were too tight. I was trying to remember how much carbs she had consumed before hitting the slopes for a few runs, trying to convince myself that it was enough, but I still knew that she was low. She insisted on going to the lodge to test.

I don’t remember if I loosened her boots before or after testing since she kept telling me that her feet hurt soooo bad, but I do very clearly remember the number that appeared on the meter after testing her blood sugar. 1.5 (27). Any number in the 1's is very, very, dangerously low. I sat her down in the snow next to the ski rack and began shoving Mike and Ike jelly beans into her mouth. Skiers were coming down the hill behind us while others were racking their skis after a few runs or getting ready to hit to slopes, all unaware of the medical emergency that was happening at that very moment while Adele was sitting there in the snow, every single cell in her body literally on the verge of death begging for sugar.

As Adele’s caregiver, I always feel like such a failure when low lows like these happen. They don't happen often, but I should know better after nearly 10 years of gaming… Why didn’t we test right before getting a few runs in instead of waiting until now? Why did we get too excited? As much as we were looking forward to the very first ski day of the year, we were certainly not having much fun right now… How could I have been such an incompetent Type 1 gamer? How could I lose focus like that?

After forty to fifty grams of carbs literally shoved down her throat and about 10 minutes later, Adele looks at me with a big smile and says “I feel better now, get your skis ready, I really want to go again!” I felt sad realizing that almost dying has become normal to her. Lows are so damn scary in their urgency and immediate danger, but can be turned around with a quick acting sugar fix. And in a matter of minutes, the dying is back amongst the living… Almost as if nothing had ever happened. What a crazy way to live. Insane really…

Sometimes Type 1 gaming can be so ironic. The physical exercise which should make us healthier, can lead to a life threatening medical emergency, whereas unhealthy sugar-loaded candy becomes the life-saving medicine… 

After this, Adele’s blood sugar hovered in the 8s and 9s (144 to 180) for the rest of the day and we still managed to salvage the day by getting enough runs in to finish the day with tired legs and huge smiles.  With Type 1 gaming, a day on the slopes is never just about skiing...

If you don't puke a bit and re-swallow, you're not going hard enough...

One of my earliest memories of the bike was being totally blown away at how the two wheeled machine stayed upright. At rest, the bike falls over unless something is holding it up. But when moving, it somehow magically stays upright. As a very young kid, I remember this being one of the coolest and amazing things that I had ever seen. Then I learned how to ride and fell madly in love…

I’m not sure if it’s the thrill of the speed along with the g-forces felt during the ride that I enjoy the most. The whole concept of a roller coaster is built on this thrill… But unlike an amusement park ride, a bike ride is free (once you own a bike) and there is no waiting in line. The bicycle, such an efficient machine that enables you to travel long distances with minimal effort compared to all other human-powered means of travel. Looking back, all I remember is that growing up I just couldn’t get enough of it…

After Adele’s Type 1 diagnosis in 2002, the bike became one of my saviors. I was pissed and I channeled a lot of this anger right into the pedals. The more that I realized how complex this whole Type 1 gaming was and how it affected every single aspect of our life, the more I became obsessed with doing what it took to not let it slow me down and the more I needed to ride. The complex trials and tribulations of Type 1 gaming pushed me go harder. I wanted to run (or in my case ride) away from it all. The physical pain of pushing oneself on a bicycle was very good at masking, dulling or burying the deep pain inflicted upon me by Adele’s Type 1 life sentence. In a way I felt guilty for having a much simpler life by not having Diabetes myself as well as having passed on my defective genes which caused Adele’s immune system to go haywire and destroy her ability to produce insulin. The bike became my own personal medieval torture device with which I punish myself regularly.

But after nearly 10 years, the anger and guilt towards the Diabetes diagnosis is beginning to lift and as a result I started questioning myself about the whole bike thing. Why bother? What the hell am I trying to prove? Why do I keep getting back on, chasing I’m not really sure what? Why do I bother lining up at the start line after signing up (and paying) for a sure beating in the local “who the hell really cares” bike race that I most often have absolutely no chance of winning? Why do I keep pushing myself to a point of near annihilation mostly chasing kids less than half my age? I’m an ordinary, average, mid-pack amateur master bike racer spending way more money than I will ever earn from the sport. But, in Adele’s eyes I’m the absolute very best damn cyclist in the universe.

Suddenly, it makes so much sense. It’s not about results or finishing first. It’s about being a role model for Adele by continuously and consciously seeking self-imposed physical suffering and discomfort in order to cultivate growth and forward movement. The bike has taught me so much about discipline, sacrifice, friendship, teamwork, perseverance, dedication, self-confidence and suffering, all character traits necessary to be a successful Type 1 gamer. And to think that this realization came to me when life really makes the most sense… when I'm riding my bike.

See ya on the ski slopes...

Unlike what most considers to be “normal”, our bodies were not designed to sit at a desk all day. Our bodies where designed to move and to perform physical work. Regular physical activity eventually causes an adaptation which makes us physically stronger, fitter and generally healthier.

Exercise also makes our body more sensitive to insulin. Essentially, it helps the insulin do its job (move glucose from the bloodstream into the cells to provide energy) much more efficiently.

With Type 2 Diabetes, insulin resistance is a big part of the problem, therefore becoming more active is also a big part of the solution. With Type 1 Diabetes, physical exercise is also important. By increasing insulin sensitivity, the Type 1 gamer requires less synthetic injected insulin to control blood glucose levels. Less medication is always better and by decreasing insulin dosages, you also increase the likelihood of getting doses right. Less medicine = smaller mistakes, whereas more medicine = bigger mistakes. A Type 1 gamer can however never eliminate all injected insulin, since unlike Type 2 Diabetics, their bodies have lost the ability to produce their own insulin. Increasing insulin sensitivity is good in that it makes it much easier to avoid high blood sugars. When the Type 1 gamers physical activity level goes up, the injected insulin begins to work much more efficiently in avoiding high blood glucose values which are the cause of long term health problems associated with the disease.

As good as this all seems, there is also one “drawback” to physical exercise for a Type 1 gamer and that is putting them at risk for hypoglycemia (low blood glucose). One of the differences between Type 1 and Type 2 Diabetes is that in “adult-onset” (Type 2) Diabetes, the patient is mostly not susceptible to hypoglycemia (low blood glucose) since the mechanisms in their bodies working to prevent this are still working. Hypoglycemia is a constant and immediate threat for all Type 1 gamers with possible outcomes being unconsciousness or even death if untreated. Hypoglycemia can creep up almost unexpectedly with little signs or symptoms until it’s too late. Playing in the snow and jumping on her trampoline are the activities that drop Adele’s blood glucose the most.

This coming weekend, Adele and I will be spending a day on the ski slopes downhill skiing. Even if the physical effort required is less than cross-country skiing, it still requires a significant level of physical effort that will surely send Adele into hypoglycemia if I don’t back off on her insulin. That is the part of the equation that is 100% certain. Determining exactly how much insulin I need to back off is the tricky part…

Adele’s test kit in my jacket (close to the body to avoid freezing) and some simple, fast-acting sugar are a must during all of our ski runs as well as hourly blood glucose checks to see if the reduced dose of insulin is enough or too much. Then, a few extra blood glucose checks during the night to make sure the delayed insulin sensitivity doesn't make Adele go low up to 24 hours after all the extra exercise.  All that work, worry and vigilance to do what most non Type 1 gamers do without even thinking twice… Is it worth it? Imagining Adele’s big smile coming down the hill as I write this… you bet it’s worth it.

2011 in review - the absolute best ride of the year

The knock on the door at 6 am wasn’t necessary since I was already awake. I was tired but still couldn't sleep even if I seemed to have tossed and turned all night between Adele's 2 or 3 blood sugar checks. Her numbers had been relatively stable throughout the night after a low low (in the 1's - scary) before supper the day before and lots of carb-counting guesstimation. Based on the constant shuffling in the adjacent bunk, I would say that Adele didn’t sleep very much either.

We were pedaling out of Pohénégamook, Québec in 30 minutes so I slipped on my chamois and riding jersey as soon as I got out of bed. Throwing my leg over my bike, I soon realized that it was going to be a chilly start on that late August morning. I appreciated the Belgian knee warmers (or layer of embrocation) that I had just rubbed into my legs. Within about 10 minutes of riding, my gloveless hands were frozen and the thick fog had condensed on my Jawbones. The wool socks were however keeping my toes pretty cozy. My numb fingers stumbled to open the Larabar retrieved from my back pocket. Breakfast on the bike it is again this morning…

Adele was sitting shotgun in the trailing RV with Dr. Ali keeping her company while driving. We needed to cover about 50 kms to the New Brunswick border before the next team of riders took over. Even if my discomfort was making me look forward to the warm comforts of the RV, I recognized a deep feeling of aliveness that made me smile as I pedaled.

The weeks leading up to this year’s Cyclebetes national relay and Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes had me second guessing my involvement… What I mean by this is not questioning if I wanted to ride or not. But rather the cost, complexity and effort of getting everything ready seemed so daunting. I’m very happy that I didn’t act on these feelings since the 2011 ride seemed to be the best yet.

It was the first year that Adele was with me for the trip. She didn’t ride, but she talked about riding in the future. That made it all worthwhile. I hope that her experience helped her to realize “why”. Why I do this, why it’s so important and why this ride is really more than just a ride. Taking the group picture before our Moncton Mike’s Bike Shop 200k ride with Adele and all of my friends and family by my side gives me one of the absolute deepest joys that I have ever experienced in my 43 years of living. There is no drug in existence that even comes close to producing such a high….

Too often I still get caught up in the numbers. Such adventures really throw a stick into the wheels of daily Type 1 management and this trip was in no way different. That week was more about basking in the positive energy generated by our new family of “do something” people who “get it” rather than focusing on the many high and lows. What better way to expose Adele to life’s most powerful force in this world – attitude.

Looking back at the absolute best ride of the past year, I would really like to thank all of our sponsors and everyone else who have supported my efforts. Thanks to my wife who endured my crankiness leading up to the ride as well as the fatigue, sleep deprivation and recovery the week of our return to real life. This also includes the anonymous online donors… In it's 5th year, our 2011 ride has brought our total raised to $46,000 closer to my dream of a cure!  From me, Adele and the rest of our family (including our extended Type 1 family), THANK YOU !!

Photos by Don Ricker photography and Jason Brackman

Use only as directed

Imagine purchasing some over the counter medication or picking up a prescription at your local pharmacy and checking the dosage label on the bottle which reads:

“Dosage determined by trial and error. Try the dosage that you think will work and either raise dose if it is not enough or lower if it is too much.
Warning – Too much of this medication may cause unconsciousness and sudden death if not treated promptly while too little of this medication will cause debilitating long term life-threatening side effects leading to an eventual slow painful death.”

As crazy as this seems, that’s pretty much what Type 1 gamers are faced with. Doing their best, guessing doses of a drug where the difference between the correct amount and too much or too little is very often so small, much less than a single drop. Yes, we do have a trained medical team to support us in this process, but at the end of the day, the Type 1 gamer becomes the final decision maker at determining insulin dosages.  There were no doctors or diabetes educators around when we did our 2 am blood glucose check on Christmas morning. Add all of the other mostly uncontrollable variables (like exercise, stress, fatigue, hormonal changes…) and the guessing game of how much insulin is just enough becomes a very, very complex equation. What works one day does not necessarily work the next.  Even if you do every single thing right, the result is still a roll of the dice…

Last week has been a roller-coaster of blood sugar values either low (in the 2’s) or high (14+ or even higher) – normal values are between 4 and 7. Entering the pre-pubescent period has not been very good to us. Even after all of these years, every single day is still a battle. Yes, there are some good or better days, but each and every bad day is a brand new war. 365 days a year. No holidays. Every single minute of every single day and night. That’s the Type 1 gamers life…

You’d think that after close to 10 years of experience gained playing this game that we’d have all of the answers and everything under control eh? Most everyone else seems to think that. After all, it’s just Type 1 Diabetes right? Think again…

Time to Wake Up !!!

Like most people, as soon as I wake up I glance over to the clock to see what time it is. For me, the first reason is not to see if I’m late but rather to see if I need to get up and check Adele’s blood sugar. Sleeping in on the weekends is always tricky and sometimes is just not possible if Adele’s blood sugar is too low and she needs to wake to eat.

Lying in bed after I wake up in the morning while Michele and Adele are still sleeping, I listen and feel a certain sense of relief hearing Adele shuffle in her bed in the adjacent room. It reassures me that she has made it through the night. Hearing her move around is not a guarantee that she is not low (or high), but at least I know that she is alive. Every now and again, I read stories where Type 1 gamers are not so lucky.

After a blood glucose check (and a correction if too high or low), it’s time for breakfast. We usually tell Adele to give herself a “head start” insulin bolus before eating to try to prevent the common post-meal blood glucose spike. I then prepare breakfast. All carbohydrates must be calculated. We use a scale to weigh Adele’s food and multiply by the corresponding carb factor to give us the amount of carbs (in grams) for the portion. Immediately after breakfast, Adele gives herself the remaining insulin based on our calculations. Protein slows down digestion making the influx of sugar into the blood stream more gradual, so we try to add it to every meal when possible. If it is during the week, all of Adele’s snacks and her lunch for the day must be prepared and the carb content calculated. We then write down all of these food items and associated carb content in Adele’s pump journal in order to be able to calculate insulin doses to be administered throughout the day to cover these ingested carbs.

Managing Type 1 Diabetes requires strong math skills. We’re beginning to introduce this to Adele, but she’s still too young to be able to calculate carbs accurately unless the portion consumed is the same as what’s on the nutritional information label. She has started to estimate carb content. This approach is necessary when we’re eating out and don’t have access to her food scale or any nutritional information, but it is not very accurate and can often cause out-of-range blood glucose values. Precise carb counting will not guarantee in range blood glucose levels but it increases the likelihood. In a nutshell, that’s what the Type 1 game is all about, doing as much of what you can at all times to increase the chances of normalized blood glucose levels most of the time.

Adele now has her own cell phone and we (either myself or my wife) communicate with her many times during the day instructing her what to do (insulin doses, extra snacks to correct or prevent lows…) to manage her diabetes.

Even with such vigilance, there are no guarantees. And for the Type 1 gamers that just can’t manage or afford such vigilance… they pretty much don’t even stand a chance…

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