For 8 1/2 years, I did the diabetes thing on my own.
Not alone - for I have too many loving and supportive people around me to ever do anything truly alone.
But on my own nonetheless.
I had quarterly appointments at the Diabetes Centre to ask my questions and then I would go back to my life and carry on - on my own.
Then I discovered the DOC.
I began reading about other people's adventures and misadventures with diabetes. I learned about what things scared people and what things I can look forward to once I have this disease for another ten or twenty years. I found athletes with diabetes and discovered we all do things differently to try to keep our blood sugar under control while we exercise and nothing ever works all the time (read: I can always do better but I'm doing ok).
I learned about diabetes humour that no one else gets but 'us' and I've discovered diabetes lingo that makes me feel like I'm part of a secret community.
I read a blog a while ago that asked people to write about how many times a day they checked their blood sugar. I expected people to say 4-8 times a day. I was surprised to read that most people had 8 as a bare minimum and some went up to 20 checks a day. Even those people using continuous glucose monitoring (CGM) technology.
That's a whole lotta test strips.
Last night I sat down to start a list of things to bring up at my appointment next week. Normally I don't ask too many questions - I just explain my numbers, get my blood test results and head back out into the world.
Spending so much time reading about what other people are doing has inspired me to do more for myself.
I want to ask them if they have any advice for finding less expensive CGMs. The ones for my insulin pump cost $50 each and last for six days (at best). If I want better control and I want to see trends in what my sugar is doing - I can only do it using CGM. But not at $50 a pop. It's too expensive.
I also want to ask about options for testing my ketones. Glucose is normally what the body uses for energy. When there isn't enough insulin in the system, the body can't access the glucose so it breaks down fat for energy instead. The byproduct of this breakdown are ketones and they are pretty toxic and can cause diabetic ketoacidosis. When I was first diagnosed I used to have keto-sticks and I would diligently pee on them every time my sugar went above 15. Then the strips began to expire before I would finish them and I just stopped renewing them.
That's not good. If I get sick - I need to know if I have ketones. If my sugar spikes - I need to know if I have ketones. So I want to know what the modern 2012 options are for ketone testing and get back to being diligent about it when I'm sick, spiking or just feeling nauseous.
Then I want to ask about glucagon. If my blood sugar drops to dangerously low levels, an injection of glucagon could save my life. For years, I would get a glucagon prescription filled, train my co-workers, life partners and parents on how to deliver it, watch it expire and fill it again. I have never, ever needed it. I haven't filled it in a few years now.
I wonder what you would say to someone with an epi pen who didn't fill their prescriptions?
It might save my life one day - so yes, I should get back into the habit of having one - at least at home for those night time lows.
I thought I was really good at taking care of diabetes. I am really good actually - much more diligent than a lot of people are. But not nearly as much as others are. So I'm going to my appointment next week armed with my questions and hopefully can take things up another notch.