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...