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stranger than fiction.

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Have you seen the wonderful movie stranger than fiction? Beyond the fact that it is a terrific story in it's own right, the use of information graphics as an overlay at the beginning (at the first half of this video clip) reminds me a lot of what life is like with diabetes. I'd love to see diabetes framed up this way. Boring, everyday activities, that we do like everyone else, layered with all the calculations and science and data and math of diabetes. It's a great concept they've laid out in this film. I just love it when something can show a better picture of the reality of life with this disease.

Hm, I feel a project coming on. I'd love to see a short video of a person with diabetes eating a meal and using all the information that goes through their mind before, during and after, as an overlay to the film. Blood test results, carb counting of food, ratios of carbs to insulin and bolus amounts calculated, numbers of units actually taken, time before insulin hits the blood sugar, glycemic index data, rates of the rise of blood sugar. You know, the stuff we deal with every day. Every meal. Every hour. Wouldn't it be compelling to see it that way? I wonder what people would think? I wonder if people would realize a little more, that what we do, can be at times, most certainly stranger than fiction?

happy thanksgiving.

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Happy Thanksgiving everyone! I am so thankful on this day for all the support, insight, confirmation, visibility, humor, ideas and solidarity I receive from you! I am thankful for a more bouyed, less lonely journey with this disease because of you. I am deeply thankful to you.

Have a wonderful day full of celebration, joy and health!

understanding more.

Dsc01101_1

My husband just got back from a long vacation with friends. For a number of reasons I didn't join them on their adventure. Some of the reasons are just regular reasons around schedule (I needed to be at work at the time they all could get away) and preference (8 people in a condo isn't exactly my idea of fun) and energy (lot's of plane rides and lot's of time to get there). Check and check. The other reasons were more diabetes related, having to do with ability (I can't scuba dive as a diabetic on the insulin pump) and reticence (I've had bad experiences in the past with people around being seen as pushy and a drag because of the schedule and regimen I need to follow with food and exercise) and a general lack of energy around a big vacation like this one (to plan for all the details of travel and all the unknowns of a new place). And then of course, there was the ever-present fact that I didn't want my diabetes to stand in the way of his fun. I hate that idea and worry about it quite a bit. How to navigate a partnership in light of the unending presence of diabetes is at times challenging. Not insurmountable, but definitely challenging. Like vacations for example. There's more to think about in our case than when you don't have a chronic illness to deal with, that's for sure. In the end, all of this added up to us deciding that he would go and I'd stay home. On paper it made sense, but like so many things, the plan and the experience can be very different.

Throughout the 10 days my husband was away, I found myself vaguely angry and uneasy. It honestly wasn't that I was angry at him. No, it was something else, but I just couldn't put my finger on what. Which didn't make sense to me. We'd talked about it and we'd decided that this was the best solution. What was the deal then? Why was I so out of sorts?

When he returned we sat down and talked about it all. No anger, more from a healthy curiosity and mutual desire to make it better. After much discussion, what it basically boiled down to was 2 things. Hurt and fear.

In the first place, I felt left out, pure and simple. Off they went without me, doing stuff I couldn't do, checking out in a way I could never check out. They were able to not only take a vacation from the daily grind, but also a vacation from diabetes. A vacation from diabetes. Wow. The idea is almost unimaginable. It was something I want so profoundly and something I can never do. I so wanted to be a part of their group instead of mine. Yep. I felt left out in a big way.

The second thing we discovered in our discussion was that I also felt afraid. I was afraid that if I'd joined the group, in a circumstance that required them to spend 10 days with me and my diabetic life, they wouldn't have understood and consequently wouldn't like me anymore. Worse yet, I feared that my husband would decide that life was so much better without having to deal with diabetes on a day to day basis, that he too wouldn't like me anymore. Given the choice to live with diabetes or not, I could imagine a person, even one that loved me, running screaming for the door.

And it's not like my fears are unfounded. This has happened to me before. It's been a long time since then but the memory of it's devastating impact on me is clear and sharp. Until my husband and I talked about it though, I didn't realize how much it was still impacting me. I thought I had moved on, but clearly I hadn't. Even though this was a new day with new players and even though my husband wasn't this other man, I was projecting my painful experience and consequent fears on this present event. Ok, so now I understood a bit more about what was going on here.

Wow! It felt like we found a diamond of an insight. Hard but precise and in a strange way, beautiful. It's an insight that both my husband and I can work with. Diabetes and the fear of rejection. That's not one you read about in the manuals you get from the doctor. No that's one you don't expect to have to experience on top of having a disease, but unfortunately you can. Being different, being misunderstood, being seen as difficult or selfish or demanding when you're actually taking care of your disease, can have real and profound ramifications. Trying to balance the desire to fit in and the need to take care of yourself, can develop into a real reticence to try new stuff or risk joining in again. Feeling safe and understood isn't easy with this disease. It takes a lot of explaining on my part and a willingness to listen on the part of others. And this experience has taught me that sometimes even I don't know what's driving my feelings. In that case, how can I give people the clues they need if I don't see them myself?

So what we're going to do after all this, is take some time to figure out the best vacation that works well for us both. Something that will be fun and relaxing and healthful and easy. And yes, something that might stretch my comfort zone a little in terms of adventure and unknowns. We're going to talk about it more beforehand and not make assumptions without checking in with each other. With a little effort and a little exploration, we're going to go on a vacation. Sometime soon, some relaxing fun will be had by all. And I can't wait!

This experience reminded me, yet again, that living my life with this is disease is a process. A journey, as a person coping with a very difficult and complex disease, as a person dealing with all that is not understood by others, as a person so vulnerable to the vageries of this disease and in turn, the kindness of others. A kindness that is demonstrated to me every day. And a kindness that sometimes isn't demonstrated and can boil down to insensitivity and cruelty. In the end, it's a process of searching for and finding a few safe people and a place to just be. In the end, it's about learning and trusting and starting over and building and taking care. Of myself, my relationships and my health. For me, that's the best I can do.

so different but also the same.

Leaves010

These are all leaves I found on my walk the other day. They are very different even though they're all leaves too. It occured to me that this is how diabetes can be. One day it's a horror, the next, not so bad. Some days it's all you can think about, others it isn't even on the radar. Same disease, different experiences.

Sometimes I find the fact that each day (or hour or minute, for that matter) can be so very different a little tough. Of course I love that there are really good days and long stretches where everything is just grooving along. My problem is that I start to think that this is normal and when the other kind of days come along, I'm still surprised and saddened. "Oh, yeah, that's right, this is diabetes too". It's always a bit off-putting to realize yet again, that day to day and hour to hour can be so very different. At times, this can make it hard to get used to anything.

In the end, I find that what works best is hoping for (and working hard towards) more of the good days than bad. Like looking for the leaves of a favorite tree. A really, really favorite tree!

note to self.

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Note to self. When your site starts to itch, even when it feels like it's just the adhesive part, change your set. Don't wait until the bitter end of your cartridge because you're too busy to change it. Change it, because you're starting to get an infection and that means your bloodsugars might go high. You know this. Don't fool yourself that something else is happening.

Note to self. Once you've changed out your site and your bloodsugars are high, don't blast an insulin bolus just to get your bloodsugar down. It will result in a low. Hello rollercoaster ride. It's happened before and you know it will happen again.

Note to self. When you finally do sit down for dinner at a local mexican restaurant, while you're waiting for your husband to arrive, don't eat the lovely, hot tortilla chips in the basket in front of you. Especially when you're bloodsugar is low and you're really hungry because you didn't eat much during the day to compensate for the rollercoaster highs. Don't keep eating the chips while you wait. Listen to that tiny voice in the back of your mind, the one you've almost drowned out by the crunchy deliciousness of those fresh, perfect, tasty chips you're shovelling in your mouth. You know you'll pay for those chips. You always do. Listen, listen, listen.

Note to self. Cause and effect is inevitable. 300's in the night, up twice, extra bolus', are not surprising. You aren't surprised. You made some errors in judgement. You fooled yourself that there would be different outcomes from your choices, this time. No, you aren't surprised. Just tired because you've been riding the rollercoaster for 24 hours. Just tired because you've been riding the rollercoaster for 21 years.

Note to self. Today's another day.