aiming for grace

Calvin's video.

I wrote the post pure voice a while back when an article, written by a ten year old named Calvin Kocher, was printed in my local paper. Well his dad wrote me then, to let me know that a film was going to be made about Calvin in the upcoming months. I just received a new comment from Calvin's dad today, to let me know that a short video about Calvin could be seen at google video here. It's wonderful. More accurately, I think Calvin is wonderful. And his dad and family are wonderful. And my god, Calvin's insights are so absolutely on the mark. Straight on, direct, eloquent, all in the voice of a very wise child. There are a number of poignant moments within the video, like when Calvin talks about diabetes being the hardest day to day disease, barring AIDS or cancer. Or the time when he says he would like to eat sometime, ravenously, without having to test or worry about insulin. But what got me the most was the very last sequence of the video, when Calvin talks about how every day, every drink, every number, every bolus, every crumb of food, every thing he does, matters. "I have to keep fighting, if I want to survive," he says. In 7 short minutes, Calvin sums up so much of what it means to have diabetes, purely, in a way that goes straight to the heart of the story.

Huge thanks to Calvin's father for sharing this video and Calvin's story with the world.

user interface failure.

My set cap became unscrewed the other day. The cap twisted partially off somehow and I didn't know it. Bam. After a couple of hours of this state of affairs, my bloodsugar rocketed to 450. I don't think I've ever had a bloodsugar that high and certainly never in such a short period of time. Nausea. Grogginess. Of course, thirst and a wicked need to pee. And this all happened at work. I took 4 units of insulin to correct and THEN discovered that the cap was not locked in. So how much of the bolus I had just delivered actually made it, I wondered? How do I decide? So I took 1 unit and waited. Tested. 430. Not much movement. I took another, and still not much movement. 420. Ok, so obviously the original correction bolus didn't get delivered. So I took 2 more units and literally had to lay down on the floor of my office because I felt so horrible. I tested every 15 minutes. Slowly, it dropped. 390, 370, 320. Then 270. Then 250. I didn't feel so sick and my head was clearing. It was 1:30 and I had to eat. I took a normal bolus, ate lightly and over the next few hours continued to drop. By 5:00 I was 175. Tired. A bit sad. But feeling better.

I love the technology. But one silly mishap like a cap not being totally locked in, and wow, it's diabetes drama time. In the 5 years I've had the pump, I've never had anything like this happen. Ever. In the 20 years I've had diabetes, I've never had anything like this happen. Ever. It's amazing to me that after all the years and experiences and "situations" I've endured, I can still have a new one that quite frankly, kicks my ass. No more "professional at work" girl for me. It's "lying on the floor, sick as a dog" girl, until I figure out what's going on. Delightful. Not. Scary. Very. On days like that I'm reminded that yes indeed, diabetes is one very serious disease.

Thanks to flickr for the perfect image.

keeping it together.

This is a chicken or egg kind of thing question.

I know that I have pretty "controlling" personality. I dot every "i" and cross every "t" when it comes to something I'm working on. I care about the details. And I've done well by that quality in most parts of my life. And then there is diabetes, where we are told that "good control" is the goal of all that we do. There's that word again. Control. So that's how I approach my diabetes, and I've done pretty well by that quality again. It's most certainly not always perfect, but I maintain good A1C's, live a productive life, minimize diabetes' impact as much as I can.

And then there are all the other things about life that happen. On top of diabetes. On top of your job. Other health issues that pose there own challenges. Family stuff. Life stuff. You can't control everything, nor do I want to. But I realized last week, how much effort I make, to keep it all going. And when there is another health thing to contend with, more of my energy has to go to just managing. I go inside. To figure out the next steps. To calm my understandable nervousness. To tease out the information that I need to understand and consequently make a knowledgable decision. Luckily, nothing is life threatening. Luckily, it doesn't all have to be decided today. Medical people have to be talked with. Information has to be gathered. Details have to be explained. And that takes time.

People on the outside don't know what I'm going through on the inside. And I don't want to always have to lead with my health issues, for them to understand. Especially at work. But I realize that when I'm dealing with more things on top of all that I deal with everyday with diabetes, it's easy for me to appear distant. Or distracted. Or short. Or controlling. I realized this week, that sometimes more than others, I'm working really hard at controlling what I can, so that I can keep it all together and moving forward. Health stuff is so challenging sometimes. And with diabetes as a constant layer, the "event" related health stuff can appear a lot simpler than it actually is. Other people see it and say, oh bummer, but you'll get better. And they're right. To a point. They see the one thing and forget about the diabetes because I "do it well" so it recedes from view.

Which is fine. It just means that sometimes I feel like I'm running so hard to just navigate my health. I think I need to learn how to carve time out for myself at these times. To process and focus and protect myself. Time to rally. Time to take a deep breath. Time to get ready and go. Again.

So back to the chicken or the egg question. Am I a controlling person or do I have to be controlling to manage all the stuff on my plate? Who knows. If people say I'm a controlling person, I guess I can't really control that. I have to know that I'm doing the best I can. I have to know it and let it help me. Especially at times like these.

bad duck.

Getting pecked to death by a duck.

That's what yesterday felt like for me. It was a tough one.

I went to visit my nurse, to take a look at the medtronic real time sensor in "real life", to get a letter for some travel I have coming up and most importantly, to try the silhouette set. I need more sites but the quick set doesn't work well on my stomach because I can feel it against the muscle wall. Thus, I wanted to try the silhouette for more options.

Suffice it to say, it wasn't my favorite experience of all time. Pinch, insert the pretty long needle under my skin, by hand. It hurt to insert it. It hurt after it was in. I'm sure you get used to it, but overall, I just didn't like it.

So we decided to try my leg with the quick set, which worked better going in, though I don't love the feel of it yet. Which is to say that I can feel it. I'm so used to not feeling the sets that the newness of using my legs, feels strange and unfamiliar.

I don't like this much. I think I'm just plain sick of sticking myself.

And then I went to my acupuncture appointment after my appointment with my nurse. In hindsight, it probably wasn't the brightest idea to schedule both appointments on the same day. The acupuncture was fine, but again, it was needles poking me. Not painful ones, but needles, nonetheless.

I know it's what I have to do. This is my life with diabetes. I am grateful that I have the ability to "manage" this disease and 99% of the time I'm used to it. And then there are the moments like yesterday, when I just feel so tired of being stuck with sharp metal objects. I'm tired of the low grade irritation and discomfort. I'm just tired of what it takes to do this disease.

Luckily today is a new day. I woke up feeling a bit better this morning. I was trying to find some humor in it all. Which is why I remembered the silly line about the duck. I wish that I could just blame my bad mood on a duck. A very bad duck who just happens to have a very sharp bill.

rock and roll.

And I don't mean the musical kind. I gardened in the morning. Went low. Stuffed my face with fat free jelly bears to get back up. Ate too many. Tested at lunch. 350! Yikes. Took tons of insulin to cover the high and the food I was about to eat. Tested again a couple of hours later. 65. Drank a half glass of milk. Am now nursing a slight headache from all the ups and downs. Man, don't you just love that old time rock and roll!

new and improved.

It's weird getting older. There are all the obvious things that everybody knows about. You know, aching bones, grey hair where it used to be dark brown, laugh lines that stay long after the laugh. Earned character is the way I look at it. Most of the time I'm ok with it.

So I've had diabetes for 20 years and now I have my couple of friends who've been recently diagnosed. My one friend in particular is doing fine. Really well as a matter of fact. I'm so impressed! On shots, using the pen, counting her carbs, adjusting to her new life with diabetes with grace and aplomb. What's cool is knowing that she is starting her life with diabetes TODAY, with all the new tools and technologies that didn't exist when I was first diagnosed. We spent some time together this weekend, working on some collages, talking about stuff, eating, laughing, having fun. At about 2:30 in the afternoon, she decided to eat so she took her insulin and ate. For her, that flexibility is normal. For me, it's still strange. I still feel uneasy when I think about eating lunch much past 1:00. Partly because I still have issues with lows if I wait too long and partly because I'm so TRAINED by the regimen I have lived with, was introduced to and had to abide by, given the technology and protocol that existed when I was first diagnosed. Luckily, for everyone, myself and my friend included, times and technology have changed and life is more flexible for us all now. And my hope is that diabetes, though difficult, will be a little bit less of a burden for her. Less of an intrusion. Maybe a tiny bit less of a pain.

My diabetes experience has different reference points and so my diabetes will always be different from those who come after me. Just as someone who was diagnosed before me has had an experience different from mine and so the things I take for granted, they do not. Don't get me wrong, I truly celebrate the progress and all that it means for our lives . But I just realized this weekend how different it makes to the experience of the same disease. I feel a like a dinosaur in comparison. I feel a little bit out of sync because I can never know diabetes without my past experiences and context as a reference point. I can now eat at 2:30 in the afternoon too, but I can't do it without that anxious moment of wondering if I should.

thinking about grace.

I've been thinking about the subject of grace over the past couple of days. After reading Kerri's moving post no title, I've been feeling quiet. Like I want to find stillness and silence so I can think. To figure out the unknowable, if I can. To understand why difficult stuff happens to obviously good people. Dedicated, focused, up front, brave people. I want to understand why we got this disease. And once we got it, why it has to be so challenging to manage it. And once we learn to manage it as best we can, why complications can still happen? No matter how hard we work at it or "follow the rules", there is still no guarentee that we are in the clear. Why is that? Why?

Well no answer comes. I don't think there is a real answer to that question, unfortunately. Because it isn't a cause and effect proposition. I am reminded of an article in the New York Times Book Review that I read over a decade ago. They were reviewing a book by a woman who was writing about having cancer and she was quoted as saying: "what will happen can't be stopped. Aim for grace." For me, that is the answer to the question. Aim for grace. I cut the phrase out of the paper and I pasted it into a book where I make collages about my feelings around my life with diabetes. I've been doing it for years, way before blogging or the oc existed, in an attempt to make it real. To create a picture of it, a record of my particular journey with this disease.

"What will happen can't be stopped. Aim for grace." It reminds me that I can't help that I got diabetes, but I can affect how I live with it. I can be vigilant with my care. I can do my best. And still there are no guarentees about the outcome. I hear myself saying to my doctor, to myself, on my blog, "am I doing well enough"? I read others ask the same question. I tell myself that I will do the best I can on the things that I can control and celebrate the WAY I approach this as much as I can. I will see the grace in my approach. And I will call it out when I see it in others.

Now I have more pictures and examples of other people's grace with diabetes. There is Kerri who was the first voice I found, and always articulates her journey with generosity and courage. Always. After reading her post, I wanted to give her the prettiest mirror I could find, so she could see how graceful she is, and take some small comfort in knowing that. There are Amy and Scott and Kevin to name just a few, who on their blogs, share everyday their grace, honesty and presence with this disease. Or there is the new voice of jerusha who found me through my other blog dear ada, and who's beautiful, graceful post captured so many of the feelings I have around diabetes. There are so many others, too many to list, who inspire me and buoy me up when I am sad or burdened by diabetes. So many voices who show me what grace looks like. So many people, in there willingness to share, show me a path, and for that I am eternally grateful. Aim for grace. I feel so blessed knowing so many people who are doing that very thing.

oops.

Last night I had dinner at a friends. I checked my bloodsugar. 120. Fine. I took a small bolus to cover the glass of wine I was having. Fine. Dinner was coming so I figured out the amount for my bolus to cover dinner. Fine. I ate dinner, yum, yum. Got home around 9:00. Checked my bloodsugar. 340! NOT FINE. What's up with that? I checked my bolus history. No dinner bolus. I must have not delivered the bolus I had figured out for dinner. Got distracted. Whatever. No insulin, crazy bloodsugar. So I took some more insulin and was fine.

There are the times that you don't know what is going on with your bloodsugars. You're doing it right but it doesn't work out. Frustrating, maddening, demoralizing.

And then there are the times that you just screw up. Regular human stuff. Distraction, assumption that you've done it this time because you've done it so many times before, simple forgetfulness. Wow. After 20 years I'm still blown away by how easy it is to screw up with this disease. One mistep and there you have it: a 340 bloodsugar. Luckily, it's easy to fix but still it's amazing to me. Human error. Oops. Yet another thing to juggle and manage with diabetes.

grumpy about new sites.

I have to move my insertion sites and I'm not very happy about it. I've been using the same general area for a long time. Moving them from one side to the other. But I know that it is time to find some fresh sites so I can give this area a rest. My stomach might be an option though the few times I've tried it there, it's been uncomfortable. Maybe I need to get one of the catheters that inserts at an angle. Before, when I've tried it in my stomach with the straight catheter, I've felt the tip of it against my muscle wall and that's felt pretty icky. Or maybe it's smart to start with the legs next. I've never done it there before. I wonder what that will feel like? Can't wait to find out, not.

Suffice it to say that I am feeling momentarily resentful about having to figure out a new place for my sites. I resent the inevitable figuring out of the clothes, the mechanics of the tubing, the unknown reality of everyday movement with new sites. I don't want to have to learn new tricks. I admit it. I don't want to have to be aware, take mental notes, adjust something that has worked just fine for years. It's like starting back at square 1 and I hate that feeling. I hate feeling clumsy and out of control with the mechanics of my diabetes, even if it's only temporarily. "Out of control" bloodsugars are one thing. "Out of control", learning curve mode, well that's another. And it's not my favorite place to be. But I have to go there. It's time. Deep breath. Here I go.