Gettin' it

Some people just don't get it. Type 1 is more than a disease, it's a lifestyle. It's not just something you think about and do some of the time, it's integrated in every second of every day of our life. I sometimes find it difficult that some people just don't get it. It's not their fault, I also didn't get it before it was forced upon me and my family. This is the whole reason behind this blog really. I wanted a tool that I could use to educate people about Type 1. I wanted to put a personal face on what it's really like to manage Type 1 Diabetes.

I often feel more understood by discussing Type 1 with a complete stranger directly affected the disease rather than talking to some of my good friends or family members who have never played the Type 1 game. Like I said, it's not their fault, they've never been forced to learn how to play.

If you're one of these people who doesn't fully understand what we go through, here are some highlights...

Adele's blood sugars can be very good then either way up or way down in a matter of minutes. You just never know. I can never ever say with 100% certainty that her sugars will be good for an extended period of time even if she doesn't eat. I make the best judgement call that I can based on past trends and knowledge that I have gained, but there are no guarantees. In order to have very good control, you need to become you're own endocrinologist. You must make minor adjustments many times throughout the day and it's just not possible to consult with your diabetes doctor each and every time. This is very stressful and I apologize if I sometimes seem stressed or preoccupied.

During the last week of Type 1 gaming, Adele's sugars have been up and down. Today was a bit better. I still need to make a few adjustments though. She's suddenly very sensitive to insulin in the morning and resistant at bedtime. This was the opposite just a few weeks ago. She went low this morning in school (3.7 at 8:45). I really don't like this since we're not there to keep an eye on her. I need to back off her morning insulin scale. Last night her sugar climbed to 16.0 right before I went to bed. She was still 13.8 at 1 am when Michele got up to check her. We gave her 0.4 units of insulin but I was uneasy all night. I feared that it was too much. I should have checked again at 3 am but I was just too tired and couldn't find the courage to get up and do the extra check. After a rather uneasy sleep, Adele's sugar turned out to be 6.3 when I checked her in the morning, so that was good. Let's see what numbers tonight will bring...

So we're still gaming... Adele's sugars have gotten better in the last few days. Actually, I will rephrase that. The many changes that I made in Adele's insulin dosage scales since the weekend seem to finally be working pretty good. The mild flu that she was fighting at the end of last week (which seems to be what caused her blood sugar to shoot up suddenly) seem to have subsided. The general daily insulin sensitivity / resistance pattern has drastically changed though. Suddenly, she needs a lot less insulin in the late afternoon for some reason. Her sugars have been low before supper for the last 2 days.

Monday, March 23rd
2:45 pm = 4.8 (very good before her afternoon snack)
4:00 pm = 10.3 (a bit high)
5:15 pm = 3.3 (too low, why the sudden drop?)

Tuesday, March 24th
2:55 pm = 5.9 (again very good before her snack)
4:00 pm = 5.6 (I gave her a Fruit to Go since she was dropping – slowly I thought)
5:15 pm = 2.2 (way too low !!! )

So what caused this? The scale that I’ve been using the past 2 days is pretty much the same that I’d been using for at least the past 6 months and now overnight it’s way too much insulin. I can’t explain it. How do I fix it? Well, the scale I used today was 1 unit of insulin for 32 grams of carbs, so tomorrow my guesstimate is 1 unit for 42 grams of carbs? Will this work? We’ll have to wait and see. When playing the Type 1 game the object of the game is to try to predict how much insulin will be the right amount. Sometimes you get it right, other times you don’t…

JDRF Kids for a Cure

Adele and I met with our local MP Mr. Brian Murphy last week as part of "Kids for a Cure Awareness week". Our mission was to increase awareness of JDRF and Type 1 Diabetes as well as to ask Mr. Murphy to write a letter to key Ministers in Ottawa requesting funding for JDRF's Clinical Trial Network proposal. Mr. Murphy was very accomodating and listened to what we had to say and also agreed to send the funding request letter to Ottawa. He also spoke to Adele (in french which was great) and told her that she had alot of courage and that what we were doing was very good. The meeting was very successful in my opinion and hopefully will help us find a cure for Type 1 a bit faster...

Since we've been back from our Florida vacation, Adele's sugars had been quite good. Like I told the diabetes nurse, these good numbers were not due to a different game plan, it's just that Adele's body was cooperating.

Yesterday however this winning streak came to an abrupt halt. Adele's body no longer wanted to cooperate. Here are some game highlights:

Friday, March 20th

12:30 am = 19.3 (way too high, gave 0.65u of insulin)

2:35 am = 19.8 (way too high, gave another 0.85u of insulin)

6:50 am = 14.8 (still too high, inserted new infusion catheter, corrected before breakfast)

8:05 am = 7.3 (very good sugar :-) )

5:15 pm = 13.5 (still high, corrected before supper)

7:15 pm = 18.4 (way too high, here we go again I thought, gave 1.5u of insulin)

9:10 pm = 4.6 (good number, but too low before bed, small snack and turned off pump for 1 hour)

10:20 pm = 4.3 (still too low before bed, turned off pump for another hour)

11:00 pm = 4.8 (still too low, but with pump off for past 2 hours sugar should go back up, I hoped / thought and went to bed...)

Saturday, March 21st

1:05 am = 14.6 (going up too fast due to insulin debt caused by pumped turned off for 2 hours, gave 0.4u of insulin to compensate)

3:30 am = 16.6 (still going up, gave another 0.55u of insulin to try to bring sugar down)

7:15 am = 9.7 (not bad)

Hopefully things will stabilise soon. They usually do... And just when you think you've got it under control again, the Type 1 gods sucker punch you with a left hook. It's all part of the game...

Vacation gaming

One of the reasons why the Type 1 Game blog has not been updated in a while is that we were lucky enough to be vacationing in Orlando, Florida for 11 days during March break. This meant that we were busy planning before the vacation, then having fun in the sun while in Florida and since our arrival, re-adjusting back to real life, all while playing the Type 1 game.

Weeks before our departure on March 2nd, we were making a list and gathering Diabetes supplies including: a spare Animas pump (through their vacation loan program), 2 blood glucose test meters and 300 test strips, 2 lancet devices and 300 lancets (small needles used to prick fingers for blood), 20 blood ketone strips, 30 opsites, alcool swabs, 7 pump insulin cartridges, 10 pump infusion sets, 25 syringes, 2 bottles of Humalog insulin, Emla cream, Glucagon, Glucose tablets and crackers. My carry-on backpack was a mini pharmacy!

Because we were well prepared the vacation went well. Adele's sugars were pretty good given the lack of schedule, constant walking in the Disney parks, occasional skipped snacks and late meals. Adele's insulin pump gave us a bit of flexibility in our schedule even if it required constant planning and re-adjusting insulin doses. There were also a few stressful / not-so-fun diabetes moments during the vacation as well. Here are 2 that come to mind:

1 - During the 6 am flight from Moncton to Toronto, Adele's blood sugar dropped from 11.1 to 1.8 in about 1 hour! I had really misjudged the very early wake time / no appetite / very light breakfast combination. The usual higher basal rate combined with the bolus to cover food intake was way too much. Luckily we caught it before it was too late (1.8 is way too low though !!). Some much needed quick acting sugar brought her up to 5.6 about 15 minutes later.

2 - Waiting for our flight from Orlando to Toronto, Adele's pump alarm indicated an occlusion error. After 3 of these error alarms and a high sugar still rising, we knew we had to change her infusion set but were unsure if he had time before boarding the plane. Adele is terrified of the long needle that inserts the catheter and always asks for Emla cream to numb the skin before the needle is inserted. The problem was that we did not have the necessary 1 hour required for the Emla cream to fully freeze the skin. We ended up leaving the Emla cream on for about 45 minutes before changing her infusion site in a bathroom stall of the airport men's room just before boarding the plane. Not glamourous at all, but it fixed the problem. Occlusion alarms didn't re-occur and her sugars started to go down instead of up. Sometimes you just gotta do what you gotta do while playing the Type 1 game.

Thanks for reading...