aiming for grace

what to lead with?

What do I lead with?

When I woke up this morning, having been up a couple of times with a very high blood sugar during the night, I thought about this question. I've had nights like last night a thousand times before. Sometimes, if it's days in a row like it can be, I feel defeated and tired. Other times, when it's a result of something I've done, like eat the wrong food or thrown caution to the wind as we all do on occasion, I just feel resigned to the result. And still other times, when I have no clue as to why it's happened, I just feel stupid or confused.

Whatever the reason, and really whatever the feeling the next day, I am coming to realize that I always have a choice as to what I lead with. After 20 + years of doing this dance, it's hard to remember that sometimes. Do I lead with diabetes or do I just get on with the day? Sometimes the diabetes aspect of my life crowds out this truth and I forget I have a choice. Other times, I do think it makes sense to lead with diabetes because it is burdensome and fatiguing and pretending it isn't so, exacts it's own kind of toll. But most times, like this morning, I think it's best to lead with the promise of the day ahead. I think today I'll focus on all the possibilities and try to quiet the noise of diabetes where I can. I'll deal with the technical issues at hand, like I always have to do. And then I'll move on quickly. Yes, I'm tired this morning and yes, I'm bummed that I didn't figure it out last night, but heh, today's a new day and I'm sick of the tyranny of diabetes. As much as I can today, I'm silencing it's nagging noise and moving on. And really, in the end, isn't that the goal of living well with this disease? Isn't it about attending to it's demands and then silencing it as much as possible, so we can get on with the living of the rest of our lives?

And anyway, today is a holiday, so luckily there can be a luxurious nap in my future. Happy days.

head in the clouds.

I love this image of sky from ace jet 170, because it reminds me of so many helpful metaphors. The benefits of "looking up". The importance of "blue sky" thinking. The idea that it's normal for things to constantly change, like "clouds in the sky". These are all useful adages for me lately in terms of my diabetes. It's been a bit better over the last week, a little more reliable, though still wonky at times too. I'm really trying to take the long view where I can and ride the inevitable waves, rather than sweat each particular up or down. To be frank, it's actually helping. The one constant of my disease is that it ebbs and flows, easy some days, not so much on others. Focusing on the long view seems to be helping me be gentler on myself when it's not going so well. It's also helping me be smart when I want to tempt fate (think cookies or cake or pie here) after it's been good for a couple of days. So I'm encouraging myself to spend a little more time "looking up", focusing on the long view and celebrating the beauty of the sky. No harm in that if it makes things a bit better after all, right?

3 fun things list.

Ah, the goal of more fun. I realize that it's easy to say, but not always easy to figure out how to achieve. Especially with diabetes in the mix. But still it's a fine goal to have. And a smart one to pursue.

In that spirit, I recently stumbled on a great post at happy silly that I keep thinking about. Just like noticing what helps, maybe getting into the habit of noticing what's fun, making a top 3 fun things list (a variation on the happy silly happy list) every once in a while, will help me focus on fun more. Knowing what's fun, having it top of mind, makes it a lot easier to lean towards it and maybe even attract a bit more of it my way. I know it sounds woo woo, but heh, it's worth a shot right?

So here goes, my top 3 fun list for today: *gardening on a cool summer morning, *going to the farmer's market for fresh raspberries, *watching a new miss marple mystery with my sweet husband and two silly dogs.

Yep, sounds fun to me! Can't wait to do them all. If anyone feels like sharing, I'd love to hear what's your list of 3 fun things today.

a goal for life with diabetes.

I've been thinking lately, that one of my goals in life with diabetes is to balance the necessity of preparedness with the pursuit of some fun.

Top photo from reference library, bottom photo found long ago but the actual source unfortunately, is long lost (sorry).

team pizza.

I had an appointment with the nutritionist at my diabetes clinic recently. It was so great. I always learn something new about food and how to deal with all it's implications to my diabetes. I also learn stuff about myself in the process of learning about food and my diabetes. Like the fact that over time, and in the effort to keep my life and diabetes regimen simple, I gradually narrow the choices I think I have. A few bad experiences with pizza for example, and over time pizza comes off my list of foods I want to eat. Which on one hand makes logical sense. There is no sense in continually going back for more of the same bad result. What's interesting to me though is how I decide that no pizza is the way to do that. After all, I wear the pump and it has the ability to do dual wave bolus', a feature designed for foods like pizza. That's another way of dealing with the pizza issue, but it hasn't been one I've even wanted to try, because it's yet another thing to have to try and experiment with and master. Another thing, on it's face, means more work, more highs and lows in the process, in a word, no fun. So my decision tree shuts off that option too and I'm back to no pizza for birdie. And so it's been years since I've had pizza for a meal. I've nibbled here and tasted there, but no crispy, thin crusted, cheesy delights as the main course for me. No, no, no.

Well, what was great about this visit to the nutritionist, was we talked about the process I go through to get to the pizza no. The reason's behind saying no, without judgement or recrimination. My wonderful nurse empathized deeply with me as a person navigating diabetes. Her empathy allowed me to see the choices I was making in a clear and supportive light. My husband was also there which helped further, because he's always trying to make my life better with diabetes. A professional and a loving partner, team members in my journey with diabetes. How amazing is that? What was great was we looked at the pizza story as a team, and we problem solved together. My nutritionist explained the biomechanics of how fat effects absorbtion. Check, on the science. Now the project. We came up with this idea that over the next few weeks, we'd just solve the pizza dilemma. Not all food dilemma's. Not dual wave bolus' and square bolus'. Nope we'd just solve pizza. We came up with a plan. I'd first eat a slice of pizza, test every hour after the meal for the next few hours. I'd just collect the data. Then I'd meet with my team to assess the data. We'd then walk through the dual wave process together. Then I'd try that with another pizza slice. Report back. It became a kind of a fun project. A team project. A small and managable diabetes project. With the end result being that I'd get to have a little bit of pizza back in my life. Fun. Not work. What fun.

Ok, so I know this sounds kind of remedial to all the folks out there that are wizards at their pump. It also may sound kind of lame that I've limited myself so much. I know that this isn't rocket science and I even know I'm smart enough to figure this out without the need of advice from a nutritionist or my husband. I know that I'm the one that's limited myself and that in the end, I'm the one that's going to need to do some work here. But frankly, that's not the point. The point is that I get filled up with diabetes management and technology interface and data collection. I'm not by nature a scientist or an engineer. My heart doesn't race with excitement when I think about yet another experiment where my body is the test animal. My personality, my tenure as a diabetic, my preferences don't predispose me to experimentation in this zone. So at the end of the day, I need some help in moving beyond my predisposition, and that's where my crack team comes in. By doing this simple small thing with them, I get beyond my habit, my decision tree, my belief of no pizza for me and end up with a reservation at ken's artisan pizza. Me, my team, my dual wave bolus and hopefully, the thinnest, crispiest, cheesiest pizza they make as my main course. It's a small thing but I think it's actually a big thing, because in the end, a little more pizza in my life would be nice. So now I'm pretty excited about this small adventure where before I was leary. It will be fun, not to mention the fact that my husband wants to have birdie's team pizza tee's made for the project. A great team, pizza and silly teeshirts. Boy am I the luckiest girl ever!

a lovely time.

Even though my diabetes has been mildly wonky lately, somehow it doesn't seem to matter so much because it's summer here, all warm and breezy and lush. At times like these, the noise of diabetes just seems to fade a bit. I've just finished a week of vacation full of small adventures, of making art and hanging with the dogs and friends and my sweet husband (not necessarily in that order). This photo, found here, captures exactly how I feel today. Light, bouyant and reminded of the wonderment of the world. It's a lovely time.

more ya-hoo.

I've been in a bad mood about my diabetes lately. Feeling extremely sorry for myself. I've gone down the rabbit hole of self pity and though it's totally understandable, it's not a fun place to be. I know this happens on occasion but today it stops. Half empty is becoming half full. Feeling the way I've been feeling only makes me lonelier and grumpier and harsher. And ultimately it only hurts me. Though I understand why it happens and I can even justify it, I woke up this morning realizing that I had a choice here. So enough of the boo-hoo and on to the ya-hoo. It's sunny and gorgeous and the day is young. Happy day.

the importance of treats.

I'm convinced that a key part of taking care of myself with diabetes is small (and at times, big) indulgences. I'm watching my brave, dedicated friend go on the pump and through the observation of her experience, I remember mine. The shock associated with the realization that I was becoming attached to a machine, 24/7. The reaction to having this clinical, medical tubing hanging off my body at all times. The dehumanization of being beeped at day and night. I know in my head, that the choice to go on the pump was smart and helpful and the right one for me, but in my body and heart, I also know that this process is strange. I know that the "rightness" of my choice, doesn't mean that all the other feelings are invalid or unreal. Making the smart and better choice to live attached to a machine vs. multiple shots a day, doesn't mean that being in the position to have to make this kind of choice is fun or good. In watching my friend go through this process, I am reminded about how much I've gotten used to. I am reminded, yet again, that this isn't much of a party, this disease.

I am also surprised at all the coping mechanisms and tools I've developed over the years. I've worked hard at finding the things that help and have consciously moved toward them. I've gotten better at bringing the sunny people and things into my life, and where I can, let go of those that drain energy or joy. I watch the news less, I walk with my dogs every day, rain or shine, I pace myself in what I take on outside of family and work. It's a process that I have to keep working at, but has also helped enormously over the long haul.

So when my friend is momentarily demoralized or sad or overwhelmed, I think about what might help her. This has been an enormous gift my friend has given me. It's allowed me to see diabetes from the outside in for the first time, and in the process understand the inside out way I've experienced it up to now. Until I needed to think about what would help her, I hadn't clearly seen what systems and techniques I've developed to help myself over the years.

So what's occured to me in this process of trying to help my friend in some small way, is the fact that all this stuff we do, even if we don't notice it anymore, takes effort, work, focus and energy. We are actively doing something, every time we take a blood test or bolus or change a site or deal with a low or high. We are drawing from our mental and physical reserves to deal with our diabetes. Fine. That's what it takes to do this disease and I'm resigned to that fact. But what I've learned intuitively, and am now able to bring to voice in the effort to help my friend, is that it's important to fill that reserve back up with things that bring you joy. Period. It's necessary to stay healthy and motivated and courageous. Energy takes food. And that's why treats are so important. Indulgences. Baubles. Whatever floats the boat, it's important to refill with the things that are a gift. A gift I give myself, to me, from me. Because I think on some deep, primal level, my body doesn't understand why it has to go through all this stuff like having a plastic tube in it or constantly being made to bleed. It sounds woo woo but I think I need to make up for that, for myself, where I can, in whatever way I can. And a treat is one very effective way of doing that very thing. Effort to deal with diabetes, out, effort to make it better by treating myself to a tee shirt or an extra walk or a movie, in. It's like a bank. A reserve that needs to be replenished. Just because I have diabetes.

So I shared that belief with my friend and we decided to go shopping. We found her something special, because lord knows, she deserves something special, and though it didn't mean that she wasn't going on the pump, it did mean that she felt prettier and more cared for and celebrated in the process. She felt a bit better, and in the end, from where I sit, that's all that matters.

the goal is peace.

Life is full of choices. Big ones and small ones. We are raised to take responsibility for our lives and the choices we make. And if we are from America, we are raised in a culture that celebrates personal choice at the highest level. The underlying message goes that if you make the right choices, happiness, health, fortune all await you. It's up to you.

But luck plays into the equation too. As does personality and circumstance. It's not like we're all born at the same starting line, given the same tools and set on our way. There are lot's of variables to contend with along the journey. Like whether you get diabetes for instance. A few of us are handed that variable, which brings with it a lifetime of additional choices and challenges and opportunities, and yes, even on occasion, gifts.

I happen to be a person who has taken responsibility for my life and choices very seriously. On the upside, I feel empowered to affect my life in profound and meaningful ways. I know I'm not a victim and I know deeply, that in spite of what has been handed me, I have many choices. I can have impact on my life, regardless. I can make things better.

But there's a rub here too. Sometimes I feel like I'm drowning in choices. Though I wouldn't want it any other way, I realize that all the choices I have in life, with the added layer of the million choices diabetes brings, leaves serious, responsible me feeling like I'm on a tight rope a lot of the time. I expect to make the right choices and when I "don't" (because I have a disease that shifts and changes for example) I often feel like I've failed. Over time, and with effort, I am learning to let go of that feeling, but the truth remains that that's where I go first. Which, by the way, adds another layer of effort: guilt, don't go there, it happens, let go, move on. Five more steps to gentleness. I'm learning to do it differently, but still it's not how I naturally see the world. It's not what I was raised to believe.

But life is a process. And through this process, I'm coming to understand more deeply, that there are infinite variations of living a full and healthy life with diabetes. And more importantly, some of them have to do with choices I can make, but many of them don't. Not surprisingly my personality factors into my experience of this disease, which means I see and feel my journey through a personal filter. Additionally, my particular personal circumstances, my history, mean I have certain choices that others may or may not have. And then there are factors like other health issues, length of time having the disease, biology and physiology, all of which also affect my journey. I'm beginning to understand more deeply, how diabetes is simply part of an equation. Understanding that each person's experience is a unique combination of diabetes plus personality plus circumstance plus choice plus biology, helps me to see the the difference between my particular choices and that of others. We all have a thousand choices to make about our disease every day, but because we're also different people, we may make different ones, based on the all the variables we don't share. Doing what's right for us, based on so many unique factors, and then living with the outcome. That makes total sense to me intellectually, but I must admit that I still feel burdened by the fact that choices aren't always pure or perfect. Choice means yes to one thing and no to another. And in the case of big choices, the difference between yes and no can be profound. Even though I know I've made the right choices for me, it doesn't always mean I don't feel sad about what they've meant for my life. Choice doesn't mean perfection necessarily.

So where this all lands is that I'm trying to have less regrets about the choices I do make, big and small. From this vantage point in my life, where I've made some tough calls that have set me down irreversible paths, this is a really important goal. I've made the choices I've made based on what I knew at the time. Diabetes played a huge role in some of these decisions. Choice plus circumstance plus personality plus luck. It's the equation for life. I guess that peace has to come from knowing that I did the best I could with what I knew at the time, based on who I am. That's the goal anyway.

if not now?

I read amy's post, living with it a few days ago, and I have thought of it often ever since. I'm so grateful for the web and the OC and the dedicated, open people, whose generosity of spirit has reminded me that I'm not alone in this journey with diabetes. amy's recent post articulated a particular, specific moment, that I have experienced numerously over the past 20+ years with diabetes. One that is so real and frankly, so important in reminding that I am still a person first. A person who is still capable of feeling shock and despair about having diabetes. Yes, I'm also a diabetic. Yes, I'm used to it. Yes, I live with it and make the best of it. But yes, I also can't believe it in my soul, that I still have it and will so forever, unless there is a cure. That momentary breathlessness, like I've been kicked in the stomach and had the wind knocked out of me, still happens. And thanks to amy's post, I know that it happens to others too. Yet again, I feel a little less alone and for that I'm so grateful.

So we still have diabetes. What has been coming up for me more and more lately, is that fact, has to matter for something. It has to count. Meaning that it has to count in positive choices I make in my life, because it certainly counts for so many accomodations and difficult choices I have to make. I know too that some of this thinking is also fueled by the fact that I'm smack dab in the middle of my life (she said optimistically) and it's what you naturally think about at this time. What's the rest of my life going to be about? What matters most to me? What matters most? And what keeps coming up for me is the phrase: if not now, then when? If now isn't the time to actively move towards the things that have meaning to me, then when exactly will it be? Later? When there's a cure? More and more, I realize that what I've earned, is letting all that I've struggled with around diabetes count for something. I have permission for different choices because of it. A more authentic living of my life. If not now, then when? The more I let my diabetes count for something, the more I find myself saying, well, yes, now would be a good time. A good time to get a studio to do my art in. A good time to learn horseback riding. A good time to put those new windows in so I can see the garden better from inside, on those many rainy northwest days. Letting it count means letting it count for now. Letting the when become now.