aiming for grace

defining normal for myself.

Lately I've noticed that I spend a lot of time navigating between feeling different and feeling like I'm just like everyone else. Normal in my living with diabetes. Different in my living with diabetes. Fully inhabiting my world, yet also tweaking my bloodsugars on the side, catching a low here, counting carbs there. On, off. Diabetes, email, meeting, lunch, diabetes, more email, more meetings, blood test, continue. Different, the same, the same, then different. It's like a lens on a camera focusing tight on a detail, then pulling back again to see the whole picture. Sometimes normal, sometimes different, whichever it is, I know on one level it doesn't seem to really matter. But then I remember what a long journey it's been to get to a place where I can see my life with diabetes, in all it's stark differences. I work hard at seeing it so that I can let it matter and count for something. That seems right to me and it's made me feel better in the long run.

Seeing the differences clearly however, does mean not being like most of the people I know, and having that be ok. Which makes sense to me too, because if being like everyone else means not having to deal with diabetes, it's not possible for me to do it anyway. So what happens is that the definition of normal becomes a definition I create. The definition of normal becomes one of being whole, healthy, contributing, alive, focusing in on blood sugars for a moment...and then back to email, just like everyone else.

a little humble pie.

The past few days have been much better. No more rocking and rolling blood sugars. Well, not at least until yesterday. And really, there's no one to blame for that, but myself. I got sloppy about eating at the regular time. I get silly about what I chose to eat. I went low. And then, like an even sillier girl, I said "let's go out to dinner honey." I tested at the restuarant and discovered that I was high because I'd rebounded. I over compensated on the high and go low again a couple of hours later. And then, surprise of surpises, I rebound in the night, again. I'm up twice, bolusing. And as a result I'm very tired today. Again. But this time I'm not so sick and tired as much as feelng a bit full on humble pie. I wish I could say that I don't know why last night happened, but that's not the case. I made some imperfect choices and I paid. I'm not going to beat myself up for it, but I'm also not going to act like it's a big surprise. I wish it were different and I wish "paying" wasn't so rough. But after 20 years, I do know that diabetes isn't open to negotiation. It's not like it's going to give me a break just this once..

So in the absence of any excuses and in light of how tired I'm feeling I guess the only thing left to do is...think about puppies. Hey, I'm up for any distraction at this point.

Sick and tired today.

I'm not feeling particularly good about diabetes today. New levels of high and low the last couple of days. I changed my site on Saturday night, hit a nerve, changed it again, drew blood, thought it would be ok, woke up in the middle of the night with a 333, changed it again, bolused, went back to bed and was pretty tired on Sunday to say the least. Last night, tired, but restless. Legs aching, aching, aching. Tossed, turned, couldn't get comfortable. Not feeling low, but decide to check my bloodsugar anyway. 33. Huh? Test again. Yep. 33. No symptoms, just restless. Treat the low. Finally relax. This morning, I'm tired. Confused. Sick of diabetes. I wish I could be philosophical about it today. But I can't. Today I'm just sick of it all, plain and simple.

seeing the practice.

Like everyone these days, I take a yoga class now and then. It's at yoga that I learned about the idea of practice. Not just the concept of practicing a pose but also as a personal process. My practice. Like blogging, which has become a kind of a practice for me. A touchpoint. A rhythm that weaves through my thoughts and days. I like the idea of practicing the things that bring joy and health to your life. I like the idea that I have some say and control over the tone of my life.

I was thinking about the idea of practice this morning. I had to change out my set and as usual, I pushed it to the very last minute. I've never liked doing it for some reason. I love the freedom from shots, the freedom for 2-3 days of not having to deal with all the stuff associated with the pump. I don't know why but when that warning beep goes off, I feel more burdened, knowing that I have to change my set in the next few hours. Which is kind of silly when I remember that it only takes a few minutes to actually do. Not so hard to do, yes, but unpleasant nonetheless.

This morning as I assembled all the stuff I needed to change the set, I thought about how this routine was, in a sense, another form of practice. Of course it is a routine in dealing with the mechanics of my pump. But it occured to me, as I was filling the cartridge with insulin for the thousandth time, that it is also a practice in caring for myself. Yes, having diabetes is a drag, but regardless, every time I change my pump, it's me making a choice about the way I live with it. It's me making a practice of caring for myself and committing to a technology that delivers the best management of my disease. I don't love the technology but I choose to use it every day, in spite of that. Because I am choosing certain path in my life with diabetes. It occured to me this morning that I could look at this required chore in an alternative light. I could view it as a 5 minute ritual that reminds me of the choice I'm making about my life and personal care. I could look at it as a practice that is life affirming rather than a chore. I could practice at pulling mind away from the chore view and pushing it toward the affirmation view. And even if I don't achieve this state of mind every time, every time I do achieve it, it's one less time it feels like a chore. And that surely will help me feel a little better overall.

2 ah ha moments.

I just started reading the book, the five gifts of illness, thanks to amy's recent review at dlife, and already it's reminded me why I like well written, thoughtful analysis and focused consideration on a subject. The author, jill sklar, articulates a really interesting idea that I've never seen framed up so clearly. She points out that living with chronic illness is a relatively new experience, when looking at the history of humankind. Thanks to medical advances and technological breakthroughs, people with diseases like diabetes are able to live long lives now, where before they would be diagnosed and die soon thereafter. This was an ah ha moment for me. I got to thinking about the state of chronic illness, or living life with disease, and realized that if viewed as a relatively recent phenomenon, then it follows that culture has not necessarily had a ton of time to understand or even at times recognize it. There aren't many customs or milestones or ways to handle it because life with chronic illness as a state of being, just hasn't been around for that long, historically speaking. And in the absense of dying, the living part is all that people see. Of course, we all love the living part, no question there! But it seems too that culture often only sees the living part, and then stops seeing when you get to the with a disease part. Another ah ha moment for me! This could be one of the reasons why I feel so invisible with diabetes. The state of living with disease is not collectively, culturally or consciously understood or recognized. It's a state of being that does not register. Neither fish nor fowl. Neither here nor there. When I read this idea, a piece of the puzzle fell into place and I understood something that I'd felt for a long time from a new vantage point. And though that doesn't necessarily change the world I live in, it does help me understand it a little better. And a little more understanding always seems to help.

mind and body disconnect.

It's been a few days since I got off the sensor. I was supposed to be wearing it for 6 days but it went wonky on day 5 so after consulting with my nurse, I took it off. Though it never hurt while I was wearing it, it was amazing how relieved I felt when I removed it. I seemed to relax in a place that I hadn't known was tense. Deep down. Away from my brain. It's almost like my body has an intelligence of it's own, seperate from my intellectual, analytical mind. No matter how much my mind says, "this is good for me", my body, somewhere deep inside is saying, "get this foreign thing out of here". I exist in between my honest appreciation and desire for technological advances that will elevate my care on one hand, and my primal, physical resistance to the very same technology on the other. Which leaves me tired and conflicted. Both feelings are powerful and deeply compelling. Both tug at me hard. And there's no clear answer, just more choices and questions to navigate. It's good to have choices, but it's also very tiring sometimes. Especially when your mind and body aren't on the same page.

brave thoughts.

I found this funny, old book while I was packing up stuff from my basement for my new studio. Most of the quotes inside are what you'd expect, but I still love the title and all that it promises. The book of courage. A little book of brave thoughts. I like the idea of having a little book of brave thoughts on those days when I loose my courage or feel burdened by diabetes or tired from this long journey with chronic illness. "Keep your courage up, and conversely, it will keep you up." Ah, they say that hope floats and according to this little book, courage, it seems, does too.

cyborg girl.

I've been on the sensor for the last 5 days. Checking it out to see if I like it. Getting some better feedback about what happens to my blood sugars throughout the day and more importantly, at night. It's been quite the cyborg adventure. Overall good, in the sense that I was surprisingly fascinated by the information it provides as well as loving the idea of getting more accurate data about trends. On the downside was the obvious bummer of one more thing stuck in my body and the fact that at times, there was some real disconnect between the numbers on my meter and those on the sensor when I went to calibrate. The good news is that I'm upgrading my pump because it needs to be anyway. The new one will have the ability by design, to wear the sensor when I want without needing the 2nd brick to read the results, which will be a bit better than this weeks adventure at least. Do I think it's perfect? Far from it! But all things being equal, I'm up for the advancement it represents and more importantly, the potential for a closed loop system in the future. Of course, I'm not thrilled about the design issues, but at the end of the day, I'm on the progress train, looking for any improvement I can get. Ah, the technology adventure continues!