It ain't just a "day game" ya know

As the alarm clock went off at 6:30 yesterday morning, my whole body felt trashed and really wanted and needed to sleep. I had ridden the bike for 1.5 hours the night before and had just crashed as soon as my head hit the pillow. My wife had gotten up at around 1:30 am to check Adele's sugar. This always wakes me up. She tells me where Adele's blood sugar is at. Since I'm the one tasked with doing the last check at night before I go to bed she consults with me to see if we need to give Adele insulin to correct a rising blood sugar or if she needs to eat to avoid or correct a low. She was 5.1 (92) coming down from 6.9 (124) when I went to bed. I told my wife to set a temp basal on Adele's pump stopping her basal insulin delivery for 1 hour (the pump automatically starts injecting insulin again after the hour has expired). My wife then asked me if she should also eat a bit and I said no. I was very tired and just wanted to sleep. She should be okay. But then in my tired, half-asleep stupor, I started second-guessing myself. Will no basal for 1 hour be enough to avoid going low? She doesn't have her Continuous Glucose Monitor (CGM) on so there are no alarms that will go off if she does go low.

The next thing that I remember is the alarm going off again. It was morning. The absolute first thing that came to my mind was Adele's blood sugar. Was she low? Was the diminished amount of insulin at 1:30 am enough to have avoided her to go low? Her basal is much higher prior to waking up to avoid the typical morning blood glucose rise (dawn phenomenon), if she was already lowish, was she now dangerously low? I listened, but couldn't hear her moving around in her bed. Half asleep, I found myself doing lots of math in my mind trying to convince myself that she was okay. My brain was telling me to get up and test, but my body was just laying there motionless. I was awake, but really still mostly asleep. After hitting the snooze button a few times I finally threw myself out of bed and headed directly to Adele's bedroom to check her blood sugar. She was 7.4 (133). My guesstimate last night was good...

For any non-gamers out there, you might think that this is an isolated incident. You may think that it's one of those nights that every parent goes through every once in a while like when their child is not feeling well with the flu and/or fever. For a Type 1 gamer, this is our reality pretty much each and every night.

How long will it take?

Almost 7 years and 3 months - that's how long we've been playing this game. We've learned alot since we started. We've adapted. We've surprised ourselves by learning how to give insulin injections using a syringe. We've learned how to prick a finger to measure blood glucose. We've learned and understand how to use an insulin pump. I'm still learning how to get the maximum benefit from using a Continuous Glucose Monitor (CGM). We've recently learned that cold (an icepack) applied to a freshly removed pump infusion site really helps alleviate itching. We've learned that old pump infusion sites can get infected if they're itched too much (Adele's thigh is much better now thanks to the oral anti-biotics). And I've learned how to make basal insulin and meal carb ratio changes without the help of the diabetes clinic nurse or doctor.

As much as the above list is long and that things like getting up multiple times some nights to check Adele's blood sugar seem a bit easier than they did in the past, I still haven't accepted Adele's diagnosis. I'm not as bitter as I once was. I don't get as upset with non-Type 1 gamers who simply don't "get it". It's much easier to go through the motions than when we started playing, but I still can't fully accept Adele's life sentence. I think about it alot, I mean I have to whenever she is in my care. The other day she just looked at me with her big eyes and I just found her so beautiful, the most beautiful 9 year old ever, she was perfect, she was daddy's little princess... with a serious chronic disease called Type 1 Diabetes. It just kills me.

Thanks for listening...

What If part deux...

Wendy had a good point in her comment on the last post. Her exact words were "Maybe people with diabetes feel like life is too short not to enjoy the foods you like the most". I'm sure that for some this is true. Do you eat to live or live to eat? Yeah, I enjoy a good meal, but I also thrive on being fit, healthy and feeling good. The latter always wins over the former for me, so I guess I eat to live.

Check this blog: http://michellestype1diabetes.blogspot.com/. The choice of food that Type 1 gamers put in their mouth may have a greater effect on control than we're made to believe...

What if ?

When Adele first got diagnosed with Celiac disease in the summer of 2002 we had never even heard of the condition. The doctor told us that it could not be cured and that there was no medication that could be taken to control it. The treatment was quite simple - a gluten-free diet for life and her bowel would heal and she would be back to "normal". Food is the medicine.

A few months later came the Type 1 diagnosis. The treatment in this second round of chronic auto-immune disease diagnoses was a bit more complex - she'd need to inject insulin for the rest of her life (little did we know then that this was actually the "easiest" part) all the while trying to balance food intake and exercise with this injected insulin in presence of other uncontrollable processes that can and will throw off this delicate balance at any given time. I remember the doctor telling us that her immune system was mistakenly destroying the cells that produce insulin, but that she could still basically eat whatever she wants as long as she gets synthetic insulin injected to cover the carbs (thus replacing the insulin that her body no longer produces). They made it seem rather simple. I'm not sure if it was to allow us time to mourn and not overwhelm us from the start? Or if they're like many other "book smart" medical experts with no real-life, 24/7 Type 1 gaming experience and really didn't know any better. They were (and still are) basically preaching that we should be able to play the Type 1 game without any dietary restrictions (well, except for Gluten in our case because of the Celiac disease). It's with this knowledge that we began our Type 1 journey. **One thing to note here is that Adele was 2 and 1/2 years old when she was diagnosed, I'm not sure what they'd tell an adult as far as recommended diet?

But what if we apply more of the "food as medicine" Celiac philosophy to the Type 1 game? After all, food is controllable, along with exercise and insulin dosage, and a big part of the Type 1 balance equation. What if part of our Type 1 gameplan is to only eat foods that work with our bodies instead of work against it? For me and Adele (and anyone else with Celiac disease), any food that contain gluten triggers our bodies to work against itself by causing damage to our bowel and make us sick. What if a Type 1 gamer would eliminate foods that wreak havoc on blood sugar and make them sick? I've always wondered how much of an effect that this would have on Type 1 blood sugar stability and control.

If it were me I'd give it a try without hesitation. To me, a low carb, whole food, high protein, no dairy diet would seem to make so much sense as a winning Type 1 game plan. It would be difficult to adapt at first, but so was the gluten-free diet when I first started and now I have no problem whatsoever following it since I feel sooooo good on it. It is worth all of the effort.

So, I'm still not the one with Type 1 diabetes and Adele is still just 9. At her age she just wants to be like everyone else, so I'm not pushing this on her right now. It'll have to come from her if she is to adopt this way of life. Right now we're teaching her about healthy eating, mostly by example, while trying to limit the "junk" food but still letting her be a kid as much as possible. Maybe we're missing the boat? Maybe modern medicine (the pill pushers) are missing the boat? Damn, I wish I wouldn't question myself as much...

Dear Thursdays, we need to talk...

Dear Thursdays, what have we done to you for you to treat us this way for the last 2 weeks. First, the cannula from Adele's insulin infusion set pops out in the middle of the night and now another old infusion site that gets infected on Adele's thigh. I apologize if we have done something to offend you. Let's please try to get along from now on. And, please pass this message on to your friends Monday, Tuesday, Wednesday, Friday, Saturday and Sunday.

Yours truly,
The LeBlanc family

We have still not received a reply back, but are hoping that we can put this whole mess behind us.

Here are a few game highlights since last Thursday... Adele came home from school and said she had a hard time walking because her left thigh really hurt. It started after lunch apparently. I had noticed that her sugars were creeping up a bit, but wasn't too worried at that point. When we looked at her thigh it was very red, swollen and there was even puss coming out of the canula insertion hole. It didn't look good at all. We tried to clean it up as best as we could with Hydrogen Peroxyde, applied some Polysporin and covered it up. Adele started feeling sick before going to bed and had a slight fever and I needed to up her insulin to keep the sugars in check.

The next morning, the fever had gone away, but her thigh looked worse. The area was like 6 inches wide, very, very red, tender and sore. We knew at that point that we needed antibiotics so we went to the clinic and got it checked out. At this point Adele's sugars were pretty much out of control. Basals were at 150% and her meal / snack boluses were pretty much double what they were the day before and still her sugar would not go below 12.o (216). Have you ever written a test where you had absolutely no idea what the answer to a certain multiple choice answer was? That is how I felt trying to figure out basal insulin rates and meal carb to insulin ratios. It was a complete guess. She went from 18 - 19 units of insulin / day to 33 - 34 in a matter of hours and was still running high. Fun times playing the Type 1 game...

Guessing insulin dosages doesn't really make for good nights. Friday night was the worse, we were up to check her sugar 4 times. Needless to say, I was tired and cranky on Saturday morning. After being high all evening, she started to go low after midnight, so I had to keep reducing the basal insulin and give her a few carbs here and there to avoid the lows. Her pump Continuous Glucose Monitor (CGM) alarm woke us up at 7 am on Saturday with a low alarm. I'm pretty sure that she would have slept in, but she had to eat and once awake, the day had started...

After a few bad weeks with the CGM we had decided to not bother with it last week, but Adele wanted a CGM sensor so we inserted one last Monday. We were very happy to have the sensor because unlike past weeks, this CGM sensor was accurate throughout the whole adventure which was very helpful in these of "your guess is as good as mine" days of Diabetes management.

So now her thigh is better, but still red and tender to the touch even after 3 days on antibiotics. We dropped in to see the doctor this morning and she told us to continue with the current treatment, but to drop back in Thursday to make sure that the infected area continues to get better. Sugars have stabalized with the changes that I have made in the last few days and I don't feel like I'm guessing insulin doses as much anymore. Fun times...

So, there you have it... Our latest adventures in Type 1 gaming... I'm having a hard time staying positive and finding the love these past days, hopefully things will turn around soon...

Numbers

I remember the Diabetes nurse telling us to not get too caught up in the numbers during our pump start session back in 2004. I'm still not exactly sure how to do this? It's impossible to play the Type 1 game without the numbers. Where a non-gamer may see a delicious (gluten-free) kids meal, we estimate a number of carbs (and hope we're right). Up to 15+ finger pokes each and every day in order to give us another number - Adele's blood glucose at that very moment. The Continuous Glucose Monitor (CGM) displays a number every 3 minutes - Adele's blood glucose mesured using interstitial fluid. Then there's the Hemoglobin A1C test that we do every 3 months which gives us another number - it translates to the "average" blood glucose for the last 3 months. How can I not get caught up in these numbers since they are such an integral part of the whole game?

Maybe the Diabetes nurse recognized my perfectionism and simply wanted to help me overcome my obsessiveness with trying to achieve tight control all of the time? Maybe she was trying to encourage us for when we go through the next inevitable losing streak? Maybe she didn't want us to compare our "numbers" with other Type 1 players? I don't know and maybe I should have asked, but didn't for some reason. I was likely way too caught up in all of these numbers !!!

We're in the last month of 3 before our next A1C. I'm not sure what to expect. I think we'll improve from the last one of 8.0. I'm really not even sure why we bother getting this test done 4 times per year. Like my wife told me, no matter what the result is, we can't really try harder. We're already doing the best that we can while still managing to maintain a certain level of sanity. I also hate reading about other Type 1 players results because, well... I can't help but comparing with ours. I know that I shouldn't but I still do. It's like comparing report cards at school. We often tend to take these results as a personal defeat (or victory)... The major fault with the A1C is that it does not reflect blood glucose variations. Highs are cancelled by lows, so a good A1C may not necessarily be the result of good control but rather many, many low lows between highs. So, what does it give us really? I remember reading about a young diabetic asking his doctor if his A1C was good enough to avoid blindness and the doctor simply said that he didn't know. There is no "magic number" that guarantees complication-free living. Why bother? It may just be something that motivates players to try to continuously improve? Or it may just be something for the docs to write in your file for the lecture the next time your A1C isn't where it's supposed to be?

Here are the game highlights of the past few days...

Thursday, January 7th

After a day of fairly good numbers - between 3.6 (65) and 11.4 (205), Adele's sugar started to creep up and just would not come down. A very high blood sugar of 25 (450) was explained once we realized that Adele's infusion set had popped out. She was no longer receiving any insulin at all. These things only happen in the middle of the night and are fixed with an insulin injection via syringe followed by a new infusion site insertion. A few more blood glucose checks to make sure the sugar is coming down and Adele woke up at 7.3 (131). She went to school and we went to work. I had about 3 hours sleep (in short intervals), so Friday was a very, very productive day:-)

Friday, January 8th

Adele's sugars were between 2.8 (50) and 13.6 (245). The 5 day old CGM sensor was not reading properly (it didn't catch the 2.8 low) so we took it out.

Saturday, January 9th

Adele's sugars were between 3.6 (65) and 11.0 (198).

Sunday, January 10th

Adele's sugars were between 3.1 (56) and 10.5 (189).

Monday, January 11th

Adele's sugars were between 4.0 (72) and 8.5 (153).

I really, really hate to say it because the Type 1 gods are surely listening, but we're on a winning streak. We're gonna sit down and enjoy the ride for now, cause you know that it's all gonna come crashing down eventually. It always, always does... Will we be ready for impact?

2010... Bring it on

Happy New Year! and Happy New Decade! So much has changed since the last new decade. First, the world didn't end because of the Y2K bug (I work in the IT field, so this was discussed A LOT leading up to well, nothing:-)), then Adele was born in the early part of the decade. Then, Adele got sick and diagnosed with Celiac Disease, then I got diagnosed with Celiac disease and felt better even if I didn't really know I was sick then, Adele got sick again and got diagnosed with the ultimate multi-tasking game called Type 1 Diabetes, we were forced into playing this game including holding down your own child to give her a needle in the very first week (not much easing into this one and we even got to practice this fun needle exercise 4 times every day in the beginning), then we learned how to play using an insulin pump and even this year we got our hands on a new game weapon called a Continuous Glucose Monitor (CGM). Some things about the Type 1 game have not changed much since we started, but other things have evolved quite a bit thankfully. So, what's in store for this new decade that we have just begun? Better Type 1 tools? A cure? Adele will be 19 years old at the end of this decade. What will her life be like in 2020? Hopefully we can be a positive influence on her and are able to give her the necessary tools and knowledge to enable her to thrive and survive independantly... It's gonna be a long climb!

We've been on a CGM vacation this past week. Adele was with either myself or my wife (or both) pretty much the whole week so we (actually Adele) decided to go sensorless. Her skin is so "raw" because of all of the itching that we're starting to worry about running out of insertion spots. Skin real estate is at an all-time low! It felt good to let her skin heal by reducing the number of foreign objects inserted into her epidermis from 2 to 1 (as well as the accompanying sticker to hold the hardware in place). The weird thing is that the week without the CGM was actually the best as far as blood glucose control that we have had in a long time. She had a few lows mostly in the 3's (from 54 to 70 in US units) and not many highs. This winning streak was not due to us doing a better job. The body suddenly starts to cooperate and becomes "predictable". It just happens some times, kindof like a streak of nice, beautiful weather. You can't plan for it to happen, but you sure as hell appreciate it while it does.

We inserted a new CGM sensor Sunday evening in preparation for back to school. After a day of good readings, Adele's low blood sugar alarm went off a few times this morning during her Phys. Ed class. I have the feeling that she's going to voice her frustrations with the system when we get home tonight. I'm still not sure about the CGM, on the one hand it does give us a head's up before a low or high occurs, but it is soooo frustrating when it's off. Arrrggghhh!!! Today's highlights are:

January 5th, 2010 (during and after Phys. Ed)

9:00 am -> CGM reading was 6.5 (117)

9:25 am -> alarm went off, CGM reading was 4.5 (81) with on arrow down, gave a juice

9:45 am -> alarm went off again, CGM reading was 4.0 (72), meter was 8.7 (157)

10:25 am -> alarm went off again, CGM reading was 3.6 (65), meter was 7.5 (135)

This past weekend we were over at friends for supper. After the meal, one of their children just walked up to the fridge, opened the door and poured herself a big glass of chocolate milk. She drank the entire glass with no clue whatsoever of all of the complex work that her body (pancreas) was about to do to maintain a normal blood sugar. She didn't know what her blood sugar was before drinking the milk, how much active insulin that she had in her system, how many carbs were in the chocolate milk or what insulin to carb ratio that her body needed. She didn't care (and didn't need to), she just wanted a glass of chocolate milk. The parents didn't quite seem to notice or care either and just kept doing what they were busy doing. For most people this whole series of events is very normal and would go unoticed. A 12 year old girl who pours herself a glass of chocolate milk and drinks it, what's so exceptional about that? For me and my wife it made us really miss the days before the Type 1 game. We both noticed it as it was happening, and talked about it later when we got home when Adele was asleep. Since Adele is an only child, this doesn't happen in our household even if she is technically old enough to be able to prepare her own snacks without supervision. No one realizes all that their body does to keep their blood sugar in check until it doesn't anymore. The start of a new decade is a time to look forward and work towards a positive future, but damn that very, very simple act that most people take for granted made me miss the days before Diabetes...

Christmas Balance

What does this picture of a bunch of bikes in my messy basement have to do with Type 1 Diabetes? Let me explain... This is also a picture of my anti-depressant drugs, therapists and my church benches. All 7 each have a purpose. I visit them regularly. They are quite therapeutic and enable me to re-establish balance in my life. Isn't balance what the Type 1 game is all about? The object of the game is to balance insulin with blood sugar. Like the Type 1 game, collecting and riding bikes to maintain sanity is not the cheapest therapy. But in reality my bikes are an investment because JDRF is over $20,000 closer to a cure because of them. That's how much our cycling club has helped me raise since 2007. This would simply not be possible if not for my passion for the bike. I find that very, very cool !! Passion is contageous. Combine one of your passions with finding a cure for Type 1 Diabetes and join in the fight! Make it your 2010 New Year Resolution!

I hope you all had a wonderful Christmas. We did. So many hours of work, preparation and planning and in about 5 minutes Adele had already opened all of her gifts. What a huge investment for a very, very short return. Ok, so the return may have been short (as in time elapsed), but Adele's excitement and joy made the whole effort worth it. At 9 years old, Christmas truly is magical for most kids and I think we managed to ensure that Adele was one of them. Adele's favorite gift is her new Wii. Actually, the whole family has been enjoying it!

As for the Type 1 game, Adele had a few ups and downs. With all the home-made food, we were guesstimating the carb content quite a bit. We had inserted a CGM (Continuous Glucose Monitoring) sensor on December 22nd and it was working well giving pretty accurate blood glucose readings. We really wanted one on Christmas eve and Christmas day since the daily routine is quite different from other "normal" days. It makes checking Adele's blood sugar so much easier (and quicker) like in church for example when you don't have to take out needles, meter, test strip... We removed the sensor on Boxing day (5 days after putting it in) after Adele begged us to do so. The sensor still worked, but Adele's winter dry skin becomes so itchy after 3 days. She litterally itches the skin right off until it bleeds. The one thing that I find the CGM useful for is to prevent lows. A summary of Dec 26th (after removing the CGM) supports this:

7:45 am -> 2.9 low (52 for US readers)

9:30 am -> 7.2 good (130)

11:00 am -> 2.7 low (49)

12:30 pm -> 10.2 high (184)

2:40 pm -> 17.8 high (320)

4:55 pm -> 8.1 pretty good (146)

6:35 pm -> 2.7 low (49)

8:15 pm -> 6.4 good (115)

10:15 pm -> 3.8 a bit low (68)

11:30 pm -> 5.8 good (104)

So, 4 lows and 2 highs. I'm sure that we would have caught these with the CGM. Because of the dry itchy skin, we have been on a CGM vacation since then, but will be inserting a new one in tonight in preparation for New Years Type 1 gaming. Happy New Year !!

Oh yeah, and thanks for the comments on the last post. I really appreciate your feedback and support.

Merry Christmas !!

The fat lady has not finished singing yet, so the Type 1 game is still on. It's been keeping us quite busy these past weeks with all the special Christmas activities at Adele's school and daycare. These celebratory festivities often involve food treats and a change in the daily routine, both of which force us to make adjustments in our Type 1 game plan. We're all tired, but mostly enjoying the festive time of year. Adele is very, very excited!

My brain has been behaving for the most part. It did start acting up though last week when I came across a story on a Diabetes support forum about a young man who died in 2002 while sleeping when his insulin pump malfunctioned going into prime mode and "priming" (or injecting) the entire contents of his insulin cartridge. He never woke up. This story scared me so much that I couldn't get it out of my head. I initially thought about keeping these thoughts to myself, but decided to share here to make a point of how delicate the Type 1 game is. We're trying to constantly maintain a balance using a very, very powerful drug called insulin. With over 100 units of insulin in Adele's pump (way more than the lethal dose) directly connected to her body, it's basically like walking around with a loaded gun pointed at your head. Similar to a gun, there are safety features in the pump that minimize the likelyhood of a malfunction, but the analogy makes our reality quite scary. How would you feel if your child was living with a loaded gun pointed to her head?

I still drive my car and my bike even if accident statistics tell me that I shouldn't, so I have decided to let it go. I've also decided to stay away from Diabetes support forums for a while. Reading about long-term complications, problems and tragedies like this doesn't help me. Even if the positive information on those sites is helpful and encouraging, the also present negative aspects and comments just get to me too much. I may just be burying my head in the sand? If I am, so be it...

Adele wrote a letter to one of her heros (Santa) a few weeks ago. This gave me the idea to also write a letter to one of my favorite heros:

Dear Adele,

I often tell you how proud I am of you, but still don't think that I tell you enough. I am proud of all of the hard work that you have done in school so far this year which resulted in a very, very good report card. I am proud of how you handle the pain, inconvieniences and sacrifices that you need to make because of your Diabetes. I am proud of you when you manage to maintain a brave face in spite of all of the needles that we need to poke you with. I am proud of your awesome performance in your school Christmas concert as well as the Christmas show that you did at daycare. I am proud of your swimming accomplishments this past year.

Continue to live without self-pity and never, ever let your Diabetes hold you back from acheiving your dreams of becoming either a teacher or a doctor, representing Canada by swimming in the Olympics, owning a big house with a pool and getting married and having the 2 kids that you often talk about.

I'm sorry that I sometimes hurt you with the multiple needles that you need to stay alive. I'm sorry that I sometimes lose patience with you when your blood sugar doesn't cooperate with your treatment. It's not your fault whatsoever and I will try to not take out my Type 1 game frustrations on you. All that I want is for you to be happy and as healthy as possible.

You're growing up to be a very, very special big girl with many qualities. I hope that you can one day find a reason for all of your Diabetes suffering and that you are able to use this to continue to make a difference.

Merry Christmas Adele

I love you

Papa

What happens if you can't fly?

Loving diabetes has been a challenge these past few days. Pretty much overnight Adele has become very resistant to insulin for no apparent reason. After a good week last week, the insulin that used to be mostly "just right" is no longer nearly enough. She doesn't have any cold or flu symptoms, but her blood glucose values have been very difficult to bring down and under control.

Playing the Type 1 game is not an exact science. One of the best Type 1 game quotes that I've read in a while was "doesn't anyone know that my Diabetes management is really just winging it?". This is so true especially for us the past few days. The Type 1 game is played by learning from your mistakes or by what has worked in the past. The last few days, what was working in the past no longer worked whatsoever, so what else could we do but "wing it"? The problem with this is that it's very stressful and there is a pretty big chance that the results obtained are not what we're aiming for. So goes the Type 1 game, always there to remind you that you haven't beaten it and that you should NEVER EVER be caught off guard.

Last night, Adele's sugars started creeping up, 15.0 when she went to bed, we corrected with an insulin bolus, but it still kept climbing. It was up to 17.2 by the time that I went to bed and she had alot of active insulin onboard from all of the corrections that I had been making to try to bring her blood glucose down. So, I "winged it" and gave her another 0.6 units of insulin. This amount was my best guess. I needed to sleep. I set the alarm clock for 2 hours later and crashed as soon as I hit the pillow.

Adele's pump alarm woke me up at 4 am. I had either forgotten to turn the alarm clock on before hitting the sack or Michele turned it off when it went off at 1 am. I have no idea what happened but we slept through the scheduled check? Adele's sugar was 4.3, not low but not high enough to be safe for the rest of the night. I turned off her pump for 1 hour, gave her 7 grams of carbs and tried to go back to sleep. I tossed and turned until the alarm went off at 6:30. Her sugar was 12.5, too high. I had tried to "wing it" and came out short...

A big bolus before breakfast to try and start bringing the sugar down followed by the rest of the insulin to hopefully cover her meal after she finished eating and off to school. Her blood glucose level slowly climbed all morning 16.7, 18.0 and 22.3 before lunch even after being quite aggressive with insulin all morning. Adele felt like crap and we needed to do something, things were quickly getting out of hand. So, I left work and went to pick her up. As soon as we got home, I gave her 2 units of insulin via a syringe and put cream on her skin to freeze it so that we could insert a new infusion set. An infusion set that is blocked means that she's not getting all (or any) of her insulin which could be the cause for the high. We waited for a bit before having lunch (to hopefully bring the sugar down), ate, then inserted a new infusion set and I brought her back to school.

The blood sugar slowly came down but still seemed to be stuck in the 12's (still too high), so I just "winged it" again and upped the basal rate as well as the supper bolus. The result? 3.1 before the evening snack. Hopefully tomorrow I will be better at "winging it"...

The funny thing is that you would never be able to stay employed if you tried to "wing it" like this in most jobs or careers in life. It's a crazy game that we play given the rules and what's at stake, but I guess that there's no time to think about it too much since in the end all you can do is try to "wing it"...

Brain waves

I love my brain. It enables me to think. It enables me to analyze. It enables me to solve problems. It enables me to do my job. But sometimes it gets a little (or a lot) out of hand and just doesn't know when to stop. I've often looked for a switch, but can't seem to find one. Riding my bike helps. Pedaling doesn't make my brain stop, but the thoughts do get clearer which is good.

What can I do? I know, I know it's part of my personality... Or is that just part of the cause? Type 1 gaming by nature requires constant attention where you're always trying to predict where the sugar level is at and where it's going. Even with a finger prick blood glucose test, it just gives you a now picture which will no longer be valid if you wait another 15 minutes. It's 24/7, with no vacations ever, not even during the night. It's the last thing I think about before my head hits the pillow and the first thing in my mind the second I wake up. I even think about it in my sleep. I was in the middle of one of my dreams last night about talking to Adele's teacher's aid about out of control sugars when Adele's pump alarm went off (it actually went off twice, once around 1 am and again at 6:40 am). Both times she was low... And still sound asleep.

Apparently knowledge is power. I agree with that but often my research sends my brain into a frenzy. It makes me second guess what I'm doing or get down on myself when I don't seem to be doing it as well as someone else.

Should we move towards a higher protein / low carb diet to help control blood sugar?

Should we look at the glycemic index of food more?

Should we try to establish a stricter daily routine?

How can we get Adele's A1C as low as some and do these players have too many dangerous lows?

What can we do now to help avoid complications later?

With the holidays coming up, how many treats are too much?

What about alternative medicine treatments like homeopathy and other more gentle and natural treatments?

And how did Halle Berry "cure" herself from Type 1 Diabetes? (http://abcnews.go.com/Health/DiabetesResource/story?id=3822870&page=1). OK this last one doesn't get me thinking. I just find it absurd given it's impossibility. Type 1 needs more celebrity advocates, but not ones that will make stupid claims that only confuse non-players and just add to the confusion between Type 1 and Type 2.

The last few days of Type 1 gaming have been quite "wavy"...

Monday, December 7th

7:00 am -> 7.5 before breakfast
10:10 am -> 6.8
10:45 am -> 4.6 (not low... yet. Adele ate a Fruit to Go to avoid low before lunch)
11:45 am -> 6.1 before lunch (low avoided)
1:10 pm -> 3.6 (low, drank a juice)
2:30 pm -> 9.7 (juice was too much, gave 0.2 units insulin to bring sugar back down)
3:45 pm -> 13.9 (too high, gave another 0.3 units insulin)
5:00 pm -> 9.6 before supper (going down)
6:30 pm -> 4.7 (going down too fast, ate her bedtime snack early)
9:10 pm -> 10.1 (too high, gave 0.5 units insulin)
11:00 pm -> 7.1 (turned pump off for 1 hour to avoid low)

Tuesday, December 8th

1:00 am -> 5.3 (turned pump off for 1 hour to bring sugar up a bit and avoid low - cgm sensor was not working so no alarm if she goes low)
7:00 am -> 9.4 before breakfast (a bit high, shouldn't have turned off pump last night)
9:45 am -> 7.7
10:50 am -> 6.7
11:55 am -> 9.5 before lunch (too high)
1:50 pm -> 12.8 (too high, gave 0.4 units insulin)
2:30 pm -> 17.3 (way too high and climbing, gave another 0.4 units insulin before getting on the school bus)
3:00 pm -> 16.5 (still way too high)
5:00 pm -> 15.7 (it just won't seem to come down!)
8:30 pm -> 11.2 (still too high)
11:00 pm -> 5.2 (finally coming down, hopefully not too much)

Wednesday, December 9th

1:00 am -> 3.4 (CGM sensor low alarm woke me up, ate 5 gummies, pump off for 1 hour)
3:00 am -> 7.2
6:40 am -> 3.2 (CGM sensor low alarm woke me up again, Adele wanted a bagel for breakfast instead of her usual cereal and blueberries which made for a LARGE insulin bolus of 2.4 units, will this be too much?)
9:40 am -> 3.7 (yup, it was too much, drank juice and ate Dex 4 glucose tablet)
10:10 am -> 4.8 (going up now, ate snack, no insulin bolus)
10:50 am -> 6.4 (climbing, gave 0.4 units insulin to prevent sugar from climbing too much, breakfast bolus is no longer active)
11:45 am -> 11.0 (too high)
1:25 pm -> 4.3 (dropping fast, she won't make it to daycare without sugar, drank another juice before getting on the school bus)
2:45 pm -> 5.9

So, what caused these fluctuations? 1 - Nervousness for a school Christmas concert, 2 - A different breakfast with over 4 times the total grams of carbs than her usual, 3 - Type 1 Diabetes, sometimes it's just like that... For us anyway.

If you have answers to any (or all) of the questions above, please please please let me know!

Moderate sized desserts... What am I thinking?

Last weekend was the Greater Moncton Santa Claus parade. I was looking for a picture that was relevant to today's post topic, but couldn't find one. I didn't bring the camera with me during the parade (it was cold and rainy) so the result is an outdated pic taken earlier this fall. Ah well, I felt that this post needed a pic for some reason...

That said, Adele really enjoyed being part of the parade this year on the Moncton Diabetes Outreach Program float instead of spectating. I backed off Adele's supper insulin bolus after an early supper before heading to the parade since she had gone a bit low the few days before. Her blood sugar was trending up a bit when we got to the float. It was 9.0. I gave her 0.2 units of insulin to try to stop it from rising too much and thinking that the supper bolus would peak and bring it down again by the end of the parade. I was wrong. Her sugar was 12.3 after the parade. Whenever our routine changes even a bit, it is difficult to make adjustements since you don't really know how the change will affect blood sugar. One of the other diabetic kids on the float went low. The change in routine seemed to have the opposite affect on her sugar. The Type 1 game is like shooting a gun blindfolded, sometimes you hit the target, often you miss...

Even after over 7 years of playing the Type 1 game, I still haven't really fully accepted Adele's Type 1 life sentence. Upon diagnosis, there was the shock as well as the "Why us" phase. Researching long-term complications certainly didn't help me feel better. But in the beginning you can tell yourself that these complications only apply to those playing the Type 1 game for a longer time period. Now we're in our 8th year. We're no longer "new" players. What do we have to look forward to? Many online support group forums may be helpful for Type 1 players who already have complications and use it as a place to vent and find support, but this only makes me feel depressed. I did manage to find a few more optimistic Type 1 players online who had minimal or no complications after 20, 30 and even 40+ years of Type 1 gaming. That gave me hope.

What can I learn from these gamers that will help Adele stay complication-free as long as possible or until a cure is found? One thing that I found with most of these "survivors" is that they had a positive attitude, incorporated exercise in their lives, tried to minimize stress and ate a healthy whole-food diet. If I could transfer the disease onto myself, I believe that I would have the personality (ok maybe not always the low-stress part :-) ) and self-discipline to live like this and maximize my chances of staying healthy. There are no guarantees. Non-smokers are not immune to lung cancer and even the best controlled Type 1 players still don't have the same level of control as the non-diabetics and they can still develop long-term problems. I can't transfer the Type 1 to myself but I can live like I would if I shared the disease with Adele. This is the reason for me to really, really try to live healthy and be a role-model for Adele. No more binging on too many chocolates during the holidays. No more HUGE deserts at family gatherings. I know that it's totally not the same for a non-diabetic to pretend to live like a Type 1 player, but committing to this at the very least forces me to think before acting or reacting which is the one of the basic Type 1 gaming skills. Hopefully this will rub off. Hopefully, if Adele decides to adopt this way of living when she gets older, she'll have confidence in the fact that it's totally possible!

It may work? Until she enters the "my parents who I once thought were cool are in fact the opposite of cool which means that in order to be cool I should do the opposite of what they do" phase of adolescence... Oh boy, now time to work on reducing my stress level...

What would happen if there was a cure tomorrow...

What would happen to the pharmaceutical companies that make millions on Diabetes supplies? What would happen to the pharmacies that get hundreds of dollars each and every month from lifelong customers like our family? What would happen to the companies that make insulin pumps that cost over $7000 each plus supplies to be able to use it?

I have a pretty good idea of what would happen to our family since I dream about a cure quite a bit, but what would happen to all the other people mentioned above who do not play the Type 1 game themselves but a good portion of their paycheque comes from the people who do? How would a cure affect the world's business economy?

Since the discovery of insulin in 1921 by Frederick Banting and his assistant Charles Best, the Type 1 Diabetes treatement has essentially stayed the same - inject insulin to keep the person alive by preventing blood glucose from rising too much. Most advancements have been in developing tools to enable Type 1 players to have a better chance of keeping their glucose levels closer to normal. And most of these advancements are not even close to being affordable for the middle-class player with no insurance.

How fast could a cure be found if every single person on this planet really, really wanted one?

As far as our own Type 1 game these days, Adele was a bit high this morning (11.9). Her CGM had one arrow up meaning that her sugar is trending up. This is expected since her pump was disconnected from her infusion set when she woke up. She said that she remembers the pump tubing being caught in her blankets and that she had to pull on it to get it "unstuck". I'm not really sure when that happened but she wasn't getting any insulin after her pump accidentally got disconnected which caused the high sugar. We reconnected, ate breakfast and sent her to school. Her sugar climbed up to 20.1 one hour after her breakfast, not the best way to start the day. Apparently the insulin debt from the time that she was disconnected was greater than I thought. Time to rethink our game plan for today and try to bring things back under control...

6 month report card

We just got Adele's latest A1C result this week - 8.0. What does this mean? The Hemoglobin A1C test measures long term blood glucose control (over the last 3 months), so a lower result is the goal. An A1C of 8.0 translates to an average blood sugar of 11.6. Her last A1C before this was 7.7 and the one before was 6.5. Crap, it's getting worse and worse.

The 6.5 A1C was her best ever and the last one before we started using the Continuous Glucose Monitor (CGM) this past spring. We were on a winning streak without any colds or flus. But she did have lots of lows. Often in the 2's. And she also rarely felt her lows which is really not good and dangerous. The 7.7 A1C was after the H1N1 flu. The virus had wreaked havoc on her sugars, which was one of the causes for the A1C rise. There's no simple logical explanation for the 8.0 A1C. So far, her A1C has gone up since we began using the CGM. The opposite is usually the case. Is it worth all the effort? Let's see what the 1st semester report card says...

We started using the CGM back in mid May. We've been trying to get 6 days out of each sensor. On average, they've been lasting about 5. We currently have the low alarm set at 4.5 (if blood sugar is 4.5 or lower, the pump alarm will go off). We have not set or used the high alarm (simply to avoid too many annoying alarms throughout the day). Generally, Adele has been wearing one sensor per week. This gives us 1 day (if the sensor lasts for 6) or more days of finger prick after the sensor is removed until a new one is inserted. We're continuously learning and here are our impressions on this new technology.

I'm a glass half full kind of guy, so I'll start with what we like:

• An added sense of security. I always feel much better when Adele has a sensor on and that I am confident that the system is calibrated correctly. This is especially true when we're out and about, during the night or when she's at school or at a friend's house. The low alarm set at 4.5 eases some of the hypoglycemia (low blood sugar) worry. It's like removing the blindfold that prevents us from seeing where her blood glucose value at a given moment because without it I ALWAYS wonder where her sugar is at and where it's going.
• Less finger pricks. Adele's fingers now have a bit of a chance to heal from all the finger pricks. In order to have good blood glucose control you need to know where the blood glucose level is going so you can make corrections before it's too late. The CGM gives blood glucose readings every 5 minutes as well as a graph (and arrows) indicating the direction that the blood sugar is going in - either rising, dropping or relatively stable.
• Less interuptions in Adele's activities. It litterally takes a few seconds to check her sugar. I simply ask her where she's at and she glances at her pump and tells me. No need to get needles ready, handle meter and strips... We really appreciate this if we're outdoors or at the mall... This also makes most middle of the night checks much less gruelling - if she's high or low and there's a bit of doubt as to the precision of the CGM reading, we still do a finger poke.
• More blood glucose values. This enables us to make small adjustments thus maximizing our chances of a good blood sugar value during the middle of the night check. I sometimes get OCD checking 2 or 3 times per hour before going to bed.
• Less hypoglycemic episodes and more hypoglyemia awareness. Before using the CGM, Adele would go low in the 2's about 1 or more times per week. Now, it's like once a month and usually due to a sensor that is off and needs re-calibration.

And now what we don't like as much:

• Painful insertion. The emla cream helps, but this is still not a very pleasant experience. Adele is quite the champion though and now goes through the sensor insertion without shedding a single tear.
• Another infusion set. The CGM adds another foreign object inserted into the skin and attached to the body. This also adds a sensor insertion about once a week in addition to infusion set changes every 3 days. It has added more tasks (which require more time) to our Type 1 management schedule.
• Itchy and chaffed skin. The skin under the sensor traps moisture. Adele starts complaining of the area being very, very itchy after about the 4th day. Some days she just begs to remove it in order for her to itch the skin underneath. The skin under the sensor become red and inflammed (like a diaper rash) after 5 or 6 days.
• Blood Glucose readings every 5 minutes can sometimes be too much information. I've often found myself correcting too soon after a bolus if I see arrows and a blood sugar trending up. Because of the delay in reading updates (CGM uses sugar in the interstitial fluid and not blood) the CGM is a bit behind if the blood glucose is changing rapidly. I need to not be as quick to correct a high since often the sugar is on it's way down, but not reflected yet by the CGM.
• It sometimes gives false readings when not calibrated properly. This weekend, upon waking, Adele's CGM indicated that her sugar was 4.5. I needed to calibrate (by doing a finger prick and entering the result in the pump). The meter indicated 2.6. She was low and the CGM had not caught it.
• Expensive and not covered by all insurance plans. We're lucky in that our insurance plan is one of the first to cover the CGM supplies. We do test less when she's wearing a sensor, so in the long run they do save some money on strips.

So 5 pros and 6 cons (the last one does not apply to us, so 5 cons really). So, it's a tie if you're counting. Given this, the final grade is that we'll still continue using the technology. We've learned alot since we've started, so I'm optimistic that things will even get better still. My goal is to lower her A1C (low 7's or high 6's) while still keeping lows at bay. That is the goal and I still think that the CGM is a very useful tool to help us get there.

In the meantime, happy Type 1 gaming and look out for the JDRF float in the Greater Moncton Santa Claus parade on Saturday, November 28th. Adele is very excited to be part of the parade this year!

It's all new, but still all the same

Last Saturday (November 14th) was World Diabetes Day. Our whole family including my parents, sister's family and in-laws attended the Famille Arseneault benefit concert at the Capitol theater. It was a great evening that raised money for JDRF as well as brought awareness to our cause.

I'm not sure how it is for other Type 1 gamers, but Adele's insulin needs and patterns are very, very different during the week compared to weekends. After some pretty good numbers on Thursday and Friday, things got a little out of control during the weekend. Adele's sugar seemed to be either high (above 10) or she needed to take in extra snacks to avoid a low. I'm not sure why she suddenly became very, very sensitive to insulin after lunch? On Saturday, I thought it was due to swimming, but the same pattern also happened on Sunday without any swimming. Our bodies are soooo complex, a fact that becomes very evident when playing the Type 1 game.

Here are the highlights of the past few days:

Saturday, November 14th, 2009

7:15 am -> 2.6 (sensor indicated 4.5 before calibration, ate 35.9g carbs for breakfast, 1.6 units insulin)
9:30 am -> 5.4 (ate 40g carbs, 1.0 units insulin)
11:00 am -> 5.5 (ate 47.3g carbs, 0.5 units insulin)
12:00 pm -> 7.7 (before swimming, 8g carbs, no bolus, removed pump since it can't be worn in the water so now she is getting no insulin)
1:25 pm -> 9.7 (a bit high, 68g carbs - it was a birthday party, 1.6 units insulin)
2:30 pm -> 4.9 (going down, 23g carbs, no insulin)
3:15 pm -> 2.9 (way too low, 35g carbs, no insulin)
5:00 pm -> 7.9 (30g carbs for supper, 1.0 units insulin)
9:30 pm -> 11.0 (too high, 20g carbs before bed, 0.7 units insulin)
11:10 pm -> 12.4 (still too high, 0.4 units insulin)



Sunday, November 15th, 2009

2:00 am -> 6.6 (turned pump off for 1 hour)
8:15 am -> 4.5 (sensor indicated 6.3 before calibration, ate 33g carbs for breakfast, 1.3 units insulin)
9:45 am -> 8.1 (before snack, ate 20g carbs, bolused with 0.8 units insulin)
10:45 am -> 4.5 with one arrow down (not low yet, but she will be soon if she doesn't eat, ate 42g carbs, gave a very small bolus of 0.3 units insulin)
11:45 am -> 4.3 (ate 69g carbs for lunch, 1.5 units insulin)
12:50 pm -> 3.9 (before going over to her friend's house, ate 40g carbs, no insulin)
2:00 pm -> 4.3 (at her friend's house, parents do not understand Type 1 so lows in this case are very dangerous, ate another 23g carbs, no insulin)
2:40 pm -> 4.2 (she's home now, but still seems to be going down, ate 18g carbs, no insulin)
4:30 pm -> 10.7 (now she's too high, we overcorrected to avoid lows, 1.0 units insulin)
5:30 pm -> 14.9 (still going up before supper, ate 55g carbs, 1.7 units insulin)
8:10 pm -> 11.5 (still high, ate 24g carbs, 1.1 units insulin)
9:45 pm -> 14.3 (still too high, 0.8 units insulin)
11:20 pm -> 9.2 (going down)


So 58g of extra carbs on Saturday and 81g of extra carbs on Sunday to treat lows. I don't like that very much, so I've made corrections in Adele's scales which translate into less insulin after lunch and more after supper. So far, these changes seem to be working. But then again, her insulin needs during the week are quite different than on weekends... One day at a time. You can't look too far ahead while playing the Type 1 game.