aiming for grace

living by the numbers.

It's interesting how, because of diabetes, numbers have developed such meaning and emotional value in my life. 48, 282, 56, 309, not good. 88, 123, 156, pretty good. 6.5, good for an A1C, 65, a bit low for a bloodsugar. 135, good too, if we're talking about weight or a bloodsugar. 45 is a good number for total carbohydrates at lunch, but really bad for a bloodsugar. 20 is an accomplishment when I'm talking about years of living with diabetes without complications, but not a number I'd ever like to see as a bloodsugar reading.

Numbers are my intellectual experience of diabetes. They are critical tools in my arsenal, providing information to be acted upon. Sometimes they are cause for celebration and pride, and other times, the source of such frustration and sadness. I understand that numbers are good and necessary to living a healthy life with diabetes. But I also find them cold and hard and unrelenting. They can quickly reduce me to a science problem, a statistic, a rating, rather than a person with a soul and heart and mind. I try hard to keep them in perspective, to remember that they are a tool and not a judgement. I try to remember that they are a moment in time. I try to remember that I need them to help me, but I can't let them totally define me.

everyday choices + diabetes choices.

My last post about owning my choices generated some comments that have really got me thinking.

We live in a culture that celebrates having as many choices as possible. I've blogged about the book by Barry Schwartz, the Paradox of Choice, which posits that we are obsessed with the desire for maximum choice in modern culture. We see choice as a means to freedom and self determination, and of course, in many ways it is. But he also talks about the downside of too much choice: a perpetual lack of satisfaction in what you have, as well as confusion and disorientation in trying to navigate all the choices presented. Our world is innundated with choice about cellphone plans and medical insurance levels and investment strategies and what shows to Tivo and iTunes to download and the like. All good things unto themselves, but taken as a compounding world to navigate, it can get a bit overwhelming. All this growth of options and opportunity means "that decisions require more effort. It makes mistakes more likely. It makes the psychological consequences of mistakes more severe." His basic thesis that sometime so much choice can simply be too much.

And it's in this world, this modern world of maximum choice, that we live as diabetics. On top of all the noise from the modern world, we have all the choices that diabetes offers up for us to deal with too, like another layer of the paradox of choice:
• This handful of almonds will have an affect on my night of rest.
• That run I'm making to catch a flight will mean I better have some backup juice on me, assuming I can carry food on board with me.
• That skipped meal will mean I go low on my drive home.
Each scenario has elements of the kind of choices we face, countless times a day. Do I eat the almonds or not? Do I run for the plane or not? Do I risk carrying the juice or not? Do I stop what I'm doing and eat now?

And don't get me wrong, I want choice and am willing to own the ones I make. But wow, when I look at all the choices we face as diabetics, living in a world that's awash with choice, it's no wonder I feel tired or grumpy or overwhelmed sometimes. No wonder it feels like I carry an extra burden.

Hm. So having said that, I wonder what can be done about this state of affairs? Well, like everything else, I do have a choice. To start, I'm going to try to notice this a little more. I'm going to try to celebrate how many choices I make every day, around my health and care and diabetes. And I'm also going to try to cut myself a little more slack when my attention slips from every choice I need to make. I'm going to feel better about the places that I have simplified my choices like with food and exercise. I'm going to continue to own my choices and like Kerri said in her comment, I'm going to feel pride for doing just that.

owning my choices.

Last night I was up with a high bloodsugar. The night before, a low. I spent this morning feeling really sorry for myself because I was tired and I resented the fact that I have to deal with diabetes so much at night.

But then something occured to me. I do know why I had a high last night. I'd probably eaten too much fat at dinner. The low the night before, I probably hadn't eaten enough protein. Yes, it is a drag that I have to deal with the fact that what I eat impacts my diabetes so much. But beyond that, I do have some choice and knowledge as to how to minimize the likelihood of this kind of nightime fun. I'm amazed, that after so long, I still try what I know won't work. I do understand why I do it. I just don't know why I'm surprised by the outcome since I'm the one making the choice.

So tonight, it's back to the known food routine. The tried and true favorites that help me to get the results I'm shooting for. They may not assure the desired outcome I'd like, but they'll certainly up the odds. Especially in the immediate future.

And then in the long term, it might also be good to think about attempting the square bolus trick again. It didn't work well for me in the past but now with the sensor, it might be easier to sync up, if I go in with real data about how my bloodsugars are reacting to specific foods. Ok, so I'm a little slow on the technology uptake. But yeah, I see the logic.

Regardless of what I do specifically, I know I do have choices. Even choosing not to do something is a choice. It means I need to weigh all the information, the trade-offs, the energy it takes and then decide. Decide to eat more protein at dinner, or try the sensor, or the square bolus. Or decide to not decide. For today at least. Because I'm tired, and that's ok too. Whatever the choice and result, I'm taking responsibility for the parts I can control, which makes me feel like I'm less of a victim. And that always feels better to me, in the long run.

one reason to keep it up.

I took a walk in the garden today. It reminded me of all the beauty the exists in the world, in spite of diabetes. My garden brings me such joy. And that joy helps to inspire me to keep up the good fight.

expecting more.

And now for a tacky plug for a new diabetes product that I'm liking. I just switched to the Freestyle Flash meter and so far, it's fabulous. It's small, quick, more accurate than my last meter, less painful to use. I know I'm probably the last person on earth to try it, but at a recent visit to my diabetes clinic, I was given one to try. Which I did and now I'm convinced. Love it (though of course, I hate the bag it comes in, which is no big surprise to anyone who has read my rantings about the sad state of diabetes accessories, but that's another post for another time). As I said, I really like my new meter, so much so, that now I wish I'd switched sooner...

Which highlights a key problem, as I see it, in the product to consumer relationship in the world of diabetes. I'm not sure I have a viable answer to the issue, but regardless, the way we find out about new diabetes products feels weird in this culture of heightened consumer targeting that we live in. In the diabetes world, new products are shown to us by a nurse at a clinic (always a fun "retail" environment) or found at a pharmacy (again, not the most exciting shopping experience). Either that or we hear about stuff from an occasional ad on tv. Or at a diabetes fair, which by the way, has never inspired frequent attendance on my part. "Oh honey! Let's spend this Saturday at the diabetes fair, OK?" I know, bad attitude on my part, but it's still the truth. Frankly, the most positive advancement in the world of diabetes commerce in my mind, has been the advent of smart blogs like diabetes mine, which have fundamentally changed the landscape for exposure and straight diabetic product feedback. That wonderful blog alone, has helped me the most in the my own research process of finding out what new products to try and buy.

But all told, we're not exactly talking about the diabetes shopping equivalent to the Nordstroms or Barney's retail experience.

I know that diabetes meters and pumps aren't the same as clothes or electronics or food, but regardless, it'd be great if trying them out didn't have to be such a clinical process. To start, the product itself isn't necessarily something I want to "shop" for, so how the stuff is introduced and sold to me, is that much more important. Maybe I have low expectations about how I will get my new products, because it's the only way I've ever experienced it, more as a medical proposition rather than a consumer one. Or maybe it's a different issue altogether. Maybe the market itself is just too small to warrant a different way of selling. Who knows exactly why things are the way they are. Maybe this is as good as it can get.

But wait. Regardless of any of that, we're still the consumers in this paradigm, and as such, we should be spoken to, reached, informed (heck, even romanced) like any other consumer demographic who has money to spend. It shouldn't take my wonderful nurse, pulling down a box from of a crowded shelf, in a windowless, florescent lit room, to get me to switch to my new, sassy meter. I like what the site instahealth says about us deserving "as much dignity as, and perhaps even more than, consumers elsewhere get everyday". In truth, we are a bit of a captive audience regarding the diabetes products we need to stay healthy. Having said that, it doesn't mean we can't expect more from the people who build, design and sell the stuff we have to buy. I do think it's fair to start expecting a little bit more.

And that's really the point here. Not consumerism or retail or slick marketing. The point is about expecting more because for a long time, we've had to take whatever products or design or communication we can get. I really don't think anyone sets out to make us feel "less than", but rather, it's a result of a history of being looked as sick or ill, rather than being whole with diabetes. There is a logical legacy of having the context be medical. But I think things are changing. I think the blogsphere for one, is a big part of that change. Even a catalyst. In the short time I've interacted with the OC, I've seen a shift in the tone of a lot of what I read, as well as what I feel and think inside myself. Yes, there are the known diabetes struggles or milestones or products being discussed, recounted and supported. All revelations unto themselves, as well as for me in particular, because I've felt alone with diabetes for so long. But now too, I get to hear others voices as they become stronger, or overcome some diabetes challenge and in turn, am emboldened myself. There is a collective voice here and from my little corner of the world, I can really hear the compounding strength of it's pride and sense of dignity. At the end of the day, that's a good thing, for us as individuals, consumers and also diabetics. It's even good for all the people and companies who make the products we need to buy. Or the people that are searching for a cure. Or the government that is, or is not, funding promising research for a cure. Yep, I do think it's fair to start asking for and expecting a little bit more consideration as people. People and consumers and voters, who also happen to have diabetes.

rigid or regimented?

A woman I know was talking about a friend of hers who has severe asthma. She was describing him as a rigid person, though she also said she understood that his chronic illness contributed to his behavior, she still thought it was his basic personality. Which made me think that I might be viewed as a rigid person too, given all the things I do to accomodate my diabetes. Eat a pretty fixed range of foods that work for me. Exercise the same time everyday. Plan my adventures meticulously, to make sure I have everything I might need. Worry about the details. Consider the potential risks. Always have backup. Someone who didn't know me well or didn't know about living with diabetes, could easily describe this behavior as rigid.

My husband says this behavior is regimented not rigid. Which is actually more accurate and less judgmental. But he is kind and has an investment in seeing the subtlity of language and description. He works to understand the impact of this disease on my life in particular and on our life together. He tries to understand the distinction between what I have to do and what I'd like to do if I had a choice.

Which brings me to a question. After 20 years with diabetes, have I changed to become a different person than who I really am?

I know. It's a silly question. I am who I am, with diabetes, period. As with everyone, my experiences, including having diabetes, have helped to form me into the person I am today. Rigid? Some might say yes. But thankfully, there are others, like my lovely husband, who see it another way. They see it as regimented or diligent or committed. And thankfully still, they see it as something to be supported and understood.

#13 : lightening up really helps.

It's been an emotional week. I finally found out the next steps in my medical saga that started a couple of weeks ago. Luckily it's not urgent, but there's still some stuff that needs to be done, which I'm really not looking forward to. The details don't really matter. It's the fact that I am facing more stuff that really got me down. Meltdown, crying in my beer, feeling very sorry for myself kind of down. Feeling burdened and unfairly picked on by the universe. I have diabetes for god's sake. Why do I have to deal with this too? Or shoulders? Or other stuff? Isn't the diabetes gerbil wheel enough for one person?

I understand these feelings. I think a good cry can be a great thing. And I'm even grateful I know what I'm going to have to do in the next month or so. All these feelings are true and justified and valid.

#13 : lightening up really helps.
I woke up thinking about this idea this morning. Lightening up is not one of my natural strong suits. I tend to the serious. To lighten up is an act of will for me at times. Truth and "real experiences" resonate deeply for me, and the idea of just "lightening up", seems kind of fake or pollyana when I look at the phrase at face value. But what I've discovered is there are many truths, often which appear opposite, yet both remain true. Diabetes is hard. Other medical issues arise. My body is aging. Yet. Yet. Yet, it's a beautiful late summer morning, ready to be enjoyed. Today. Yet, I have two dogs who always make me smile. Who love me unconditionally. Who really want to go on their morning walk while I'm sitting here typing. I have two truths in my hand today: one is I have more medical stuff to deal with in addition to diabetes and that's tough and two is that it's a beautiful morning and I have dogs who'd love to be with me walking around the neighborhood. It's not that one's mutually exclusive of the other. But one can take the forefront. The first truth is not going away. But why deal with it today? And how much can I really "deal" with it anyway? I can worry, though there really isn't much to worry about. I can feel sorry for myself, but that doesn't give me anything except more sadness. So today I'm choosing lightness. I'm going to enjoy the adventures of today and remember what I already know, which is that lightening up really helps! An idea, by the way, two very impatient dogs couldn't agree with more.

thanks for the tip.

So a while back I started a style hive site to highlight some possible cool accessories for life with diabetes. What didn't matter so much to me about style hive was the "social networking" component to it. I just thought it might be a fun way to make the point about choosing great design where I could, in the diabetes products I use. Well yesterday, much to my surprise, someone pinged me from the site with a really smart suggestion for a diabetes accessory bag: japanese pencil cases. How nice. And were they ever right about the pencil case idea! First off, there are tons of options to choose from, many of which feature cute, cartoony, hello kitty and hello kitty-esqe animated characters that yes, I do admit to loving (especially badtz maru and chococat). And secondly, some of the pencil cases I found have a nice triangular design form which allows the bag to easily sit open on a surface. Very smart! And also proving again, that sometimes helpful ideas can come from unexpected places. Frivolous, maybe. But if it makes me smile every time I pull out the bag to test, why not go for it?

the upside to inside.

I have never had a good friend who has diabetes. Of course, I've met people who have it, but unfortunately, a genuine friendship never naturally developed. Until the OC, I really knew very few people with type 1 diabetes. It was weird and lonely. But now things are better because of the OC and blogging.

Recently, one of my good friends was diagnosed with diabetes. Such a hard thing to see someone I care about have to go through. I was glad to be a part of her early days of navigation through the tidal wave of information, new process', tools, techniques and changes. And she has been so brave and open and willing to do what it takes to adjust to all that diabetes means to her life now. I am moved by her grace and courage.

I'm also amazed at how different it is, to have a person who I can comfortably talk to about this life with diabetes, face to face. Already, there is an insider shorthand that she understands. It's almost errie to NOT have to explain all the details about timing or bloodsugars or food, when we're out to dinner or hanging out. I used to feel like being diabetic meant that I was no longer a part of the "normal people's party". But now, with my friend and all the people I know from the OC, I'm thinking that even though the diabetes "party" isn't a place any of us want to be by choice, I couldn't think of a better, braver, more inspiring group of people to be with if I tried.

prepared for modern travel.

Yesterday's news about all the scary things going on in London, on airplanes, in the world, is just so weird and disturbing. And big. How do you control something as strange and huge as terrorism? Though I understand the idea, I'm not sure banning all liquids, gels or electronic devises on planes is the answer. I do admit though, that I'd have never thought of those things as potential weapons to do horrific things with, so I get the intent of the ban. I'm just not sure it really is going to do much more than frighten everyone a little bit more. But who knows. These are most certainly bizarre times that we live in, and weirdness begets weirdness.

I couldn't help but think about what this is going to mean for traveling diabetics, going forward. I've got the doctor's letter saying I need to carry insulin and needles and pump stuff. Do I now need to have my doctor add food and glucose gel to that list? Probably I should, just to minimize the possibility of questioning and confusion. I've been pulled aside for a search of my pump and diabetes stuff before, especially in the early days following 9/11. I understand and accept it. What's made it easier, is coming to the airport prepared, with all the back up info and stuff available and easily accessable. Over time it's gotten so I'm now rarely pulled aside. I just let them know that I have an insulin pump on before I go through the metal detector, which rarely goes off and then basically sail on through. I guess it's going to be a little less simple for a while. Oh well, it's a weird world out there so some more inconvenience, in the hopes of safety, seems like a worthwhile trade off.