aiming for grace

remarkable.

Maybe I'm seeing the glass as half full, but it feels like we might be in the midst of a shift in cultural narrative about diabetes. 

For example, did you notice the way President Obama addressed the fact that his Supreme Court nomination, Judge Sonia Sotomayor, has diabetes? Her diabetes wasn't the story anyone led with, but it also wasn't a fact that was overlooked or ignored. The story line felt pitch perfect to me, that this is a remarkable woman, who has achieved remarkable things in her life, all of which have led to this remarkable moment in history, and by the way, she's done so while having diabetes. The story goes that we can respect her noteworthy accomplishments that much more because of this fact. Diabetes adds to the picture of this person, not subtracts. 

Maybe the new story line emerging is one that says that diabetes doesn't make a person less than but rather, it actually makes them remarkable. A plus to all their other accomplishments they have as a human being throughout their lifetime. Maybe what's starting to emerge here is a larger cultural understanding that living well with diabetes is in it's own right, actually one of life's accomplishments worthy of notice and respect. 

Now wouldn't that be remarkable!

remembering the good stuff.

I know it's been a really, really long time since I've posted. There just hasn't been anything interesting enough for me to say. Diabetes is what it is and I'm in a good place with it emotionally these days, plus nothing interesting enough to share has come to mind lately. It's funny too because at times like these I feel a little superstitious, like I don't want to call too much attention to the good feelings. It's like they might just slip away if I talk about them too much. Silly I know, but the truth nonetheless. 

But still there are things I come across that I want to capture in this place of focus and health. Things that remind me of how and why I choose to take my diabetes care so seriously. Like this wonderful video about slow food and alice waters below. It reminds me that a healthy approach, a mindful awareness of health is around us all the time. I can tap into it any time, regardless of the fact that I have a chronic illness. Good food, good eating is good for everyone, even me, especially me, given my diabetes. It's good for me to remember this, which in turn, helps me take my diabetes a little bit more in stride. 

Which is a good thing any way you look at it!

comfort first.

 

This feels a bit like an epiphany, like something very big, perhaps even life altering. I know the roots of it have come from years of consideration and questioning, but last week it all came together in one very clear jolt. Diabetes is, simply put, uncomfortable. That's it in a nutshell. Diabetes is uncomfortable. Uncomfortable in it's treatment, the unending shots, set insertions, candulas, insulin boluses, blood tests, set removals, adhesive tapes, pumps and pump clips, glucose monitors, tired sites, sore fingers, low blood sugars, high blood sugars. The list goes on and on. Uncomfortable in it's persistence and unending demands. Each annoyance in its own right, totally bearable, but over the years, cumulatively, diabetes and all that it takes to do it well, adds up to a underlying subtext of discomfort. Pure and simple, diabetes is uncomfortable.

I started to grasp this idea fully when I was being be fitted with a glucose monitor the other day. The wonderful nurse I've worked with for years, inserted the monitor into my hip, a quick jab and then a flashing burn. Unfortunately, the insertion needle got stuck in the process and she had to tug and wrestle with it to get it out of the set, trying not to hurt me too much, but of course, jabbing me here and there as she struggled. Eventually it came out and I was left with a burning, sore spot for the next few hours. Nothing terrible, but certainly noticeable nonetheless. Noticeable, like so many other things I do to deal with diabetes. Nothing terrible, but still noticeable.

The epiphany itself actually came the next morning. Yes, I realized, diabetes is always going to be uncomfortable to some degree. This ongoing discomfort is my reality, it's the normal state of affairs. Wow. So true and yet I'd never really seen it with such clarity. Discomfort. I sat with that for a moment and then slowly a question came to mind. What can I do about this, if anything? And almost as quickly, the answer came to me. If diabetes always means some degree of discomfort, I thought, I need to seek out comfort as vigilantly and with as much commitment as I can possibly muster. I must find comfort where I can! To make it better where I can. An antidote, a counter balance, to ease all the small and big discomforts of life with diabetes. A simple idea at face value, but also a very big one to actually act upon. If diabetes is uncomfortable, then comfort in the rest of my life needs to become my focused goal. Physical comfort. Emotional comfort. Actively choosing comfort wherever I can.

A real commitment to comfort means reevaluating how I physically maneuver through the day. What clothes I wear, the chair I work in, even being more mindful of who I choose to spend my time with when I have the choice. Where before my goal was to accommodate diabetes as little as possible beyond the medical maintenance it required of me, I now see that by putting comfort first, a little more accommodation means that I can be far more comfortable in my life overall. It's such a revelation that what I feared would be a weak accommodation to diabetes, is actually a great gift to myself. Diabetes hasn't won, I have. As the importance of actively seeking comfort in my physical and emotional life sinks in, I'm finding immediate and palpable relief already. It turns out that looser clothes, eating earlier, saying yes to longer dog walks really makes me feel better. And thankfully because of that, the inevitable discomfort of diabetes somehow isn't as hard to deal with overall. Which seems like such a simple idea, and yet I see now that truly understanding and acting on it's meaning, has been surprisingly long in coming.  

honesty.

 

I'm going in this morning to be fit for a sensor for the week. I know it's a good thing because it will yield lot's of helpful data. It's time for that given how strange my blood sugars have been the last couple of months. It's amazing we have the ability to this now. Such accurate, persistent feedback. What an helpful tool in our arsenal. So yes, from a diabetes management, medical information standpoint, it's very a good thing.

But that's not how I feel this morning. I feel sad about it. I know it's not going to be anything horrible from a physical standpoint, but still, I'm so very tired of having devices in my body. For whatever reason it makes me feel a little off kilter, like I'm one beat off on a song. I know, old story, old lament. But there you have it nonetheless. The feelings are real and I'm trying to be OK with that for a bit. I guess honesty is the least I can do for myself today.

I'll get mine now.

 

I'm an apple girl in all things technical except my phone. I haven't bought the iphone yet, due in great part to a profound reticence to having to learn yet another technical tool. I like my tech tools well enough, but they're just that to me, tools not toys, and as such I come to resent them when they cause me more work in the process of "helping me out". But today's announcement by apple and lifescan about this groovy, new diabetes app (scroll to the middle of the post), will most certainly be the thing that tips me into buying the iphone. Period, no question, no doubt, done deal. Nicely designed (of course), simple to use and thankfully, not very "medical" feeling overall, this app looks like it will let me do what I need to do, seamlessly, throughout my day. What a concept! The only downside here is having to wait until June! 

Thanks to engadget and Alex for the original heads up. You just made my day!

remembering why.

 

Recently, I've been struggling with the unending nature of diabetes. Wondering about how I can stay motivated when there's no real ending to this disease in sight. Working hard and remaining vigilant means I feel better day to day and hopefully staves off worse things in the future. But the fact is, that today is now and with so much time having past, an ongoing clarity as to why I do this the way I do it can sometimes be elusive. 

When I was first diagnosed I felt terrible. I knew something was really wrong with me so the incentive to take shots and blood tests was very clear in mind. I wanted to feel better, so much so that I was more than willing to take shots and weigh my food and prick my fingers multiple times a day. And once I did these things, the results were dramatic and obvious. I started to feel better immediately. I put on much needed weight. I could make it through the night without having to pee multiple times. And thankfully the demanding thirst I'd battled for months finally subsided. I felt better and I clearly understood in a very primal way, the things I was getting for the things I was giving up.

Fast forward to today nearly 23 years later and that stark understanding isn't as obvious to me. Not because I'm any less diabetic now, but rather that this way of life has become so normal and as such, less distinctly other than before. The good news is that in being so vigilant, I'm basically pretty healthy today. In being as healthy as I am though, it's easy to forget that I'm in fact still choosing a particular approach to my diabetes. I used to say that there was no choice, that I would always choose vigilance over denial. What I'm realizing now is that by not recognizing my active choice to continue to live this way, I've lost a sense of context and put my ongoing motivation at risk in the process. By not seeing the choice I make everyday to continue to pay attention to this disease, I miss the poignancy and importance of that act. I miss the gift I give myself. At the end of the day, I deny myself a truth about diabetes, that the stakes are as high as they ever were. Ultimately though what I really miss is a truth about myself. That today, like the day this journey began, I'm choosing health over sickness, vigilance over denial and energy over infirmity, every single day. And that's really, really important to remember, especially on those days when it's hard to stay motivated!

hoping.

Sanity returns and hope springs eternal. I was overcome with emotion this morning because of this. It's amazing how hope can remain dormant for so long, only to be rekindled in a flash. I can barely allow myself to imagine the possibilities this could bring. But I will. Hope. Just a little bit.  

what's in a number?

 

487.

It proves I have a disease. When I was first diagnosed, my blood sugar numbers were in the high 300's. Something was obviously wrong with me given all the weight loss, the incessant thirst, the need to pee all the time. It took one blood test to know what it was. One number and it was clear that I had diabetes. That blood test was the day my life changed forever. One way of living ended and a new way, one filled with numbers and calculations, physical ups and downs, psychological challenges and trials began. That day I started to live my life in small increments punctuated by blood and numbers. An hour here, stop and test and decide. 3 hours later, do the same. 5, 7, 10 times a day. From then on, until now. When I look back on all the days preceding this moment now, I see a time table, a chart full of numbers and countless decisions, stretching back behind me as far as the eye can see. 

487. 

That was my blood sugar reading a couple of days ago. I'd forgotten to take my bolus at breakfast. A simple, though rare mistake on my part. I've been having quite the struggle with my blood sugars lately, in part because I've also been battling the flu the last couple of weeks. For me unruly blood sugars mean lot's of interruptions at night. High blood sugars at crazy hours. Which also means I'm extra tired on top of the toll the elevated blood sugars (and inevitable crashes that happen when trying to correct them) take on me. Extra tired and distracted so I just assume I'd taken my usual bolus before breakfast until I felt strangely queasy and disoriented. Hm, what's up, I wondered? I tested and there it is, 487. Crazy high 487. Mystery solved.

It's a couple of days later and I continue to wrestle with my night time blood sugars. My doctor offers suggestions, I try them, I gather data, I call again, we try some more. If this doesn't clear up soon, I guess I'll go on the sensor for a bit. Not the end of the world, but yet another thing to deal with and wear on my body. My body that's literally tired, the skin fatigued from all the tubes and liquid and adhesive it's endured for years. I know I'll do it, but I also feel like I want to scream NO! I've had enough. I can't believe I have to do this too, on top of candulas and finger pricks and set insertions. A primal part of me is begging me not to do this one more thing. I know I have to quell that voice inside me as I've done so many times before. I know it, but for just a few days, I'm letting it win.

And then I remember something that is so simple, and yet is so easily forgotten in all the busyness of my day and life. I remember that I have a disease. I have a disease and I'm as "sick" as the day I was diagnosed. One missed bolus before a meal and my blood sugar is 487. One missed dose of insulin and there you have it, plain as day. I have a disease. 

I want to remember this a bit more. Not to feel sorry for myself but rather, to see what I do, what's become routine, and honor it. I want to remember it so that I can own all the difficult choices I've made, both big and small, every single day, every few hours, since the day I was diagnosed nearly 23 years ago. And along with that I want to remember too that I've also changed since that day. I'm now a person who is 23 years older with diabetes and as such, has a different body at a different life stage. What has worked for the younger me, doesn't necessarily work in the same way for the present day me. And what works today, might not work in the future. Just because I've "mastered" the regimen doesn't mean it's always going to turn out the same. 

487.

So though it wasn't a good number to have, it's turned out to be a helpful one. 487 reminded me that in fact I do have a disease. It reminded me of the long journey I've been on and the fact that at this point in time, there really isn't a destination or ending. 487 reminded me that along the way there are countless moments of victory and that at the core of it all, I'm doing the best I can with a very tough and unrelenting disease. And truly seeing that really does matter, regardless of what the numbers say.

merit badges earned.

 

Recognize Victories. Consider Lightness. Celebrate Courage. Embrace Kindness. Aim for Grace. 

For quite a long time I've been thinking about how I'd like to have a way to acknowledge all the small milestones of living with this disease. Little markers, badges if you will, that are earned every day, every hour, every minute, by countless people living with chronic illness. Merit badges to acknowledge all the grace in light of struggle, the courage in light of unending challenge, the everyday victories people with chronic illness have every day. The older I get the more I'm convinced of the importance of celebrating and marking them in some small way. Because of my love for all things girl scout, what came to mind was a token, a kind of merit badge for all the small milestones we achieve. I thought about how great it would be to give a physical acknowledgment to someone when they needed a little boost or vote of confidence. A nudge to say yes, I see what you face and I think you've earned some recognition, you are a hero in my eyes. And then I thought about how nice it would be to receive something like this from someone else. Moments marked by love and of bearing witness, of being seen. Moments where the tiny milestones are acknowledged.

At first I thought I'd have them embroidered so that a person could sew them inside their coat jackets or purses to remind themselves quietly of their own courage and grace. But then I thought it might actually be better to wear them with pride, for all the world to see. My thought was that in sharing them outwardly, not only do we acknowledge to the world (and ourselves) what we've accomplished, we also invite others to consider these ideas in the broader sense. Consider Lightness. Celebrate Courage. Embrace Kindness. It occurred to me that the world might actually be a better place if everyone recognized their own everyday victories, as well as those of others, just a little bit more. Aim for Grace.

So I got myself a badge machine and made some merit badges for fun. It's helped to take words and concepts and make them tangible and real. To see and touch the ideas change them somehow. For me and for others. A case in point happened the other day after my not so happy doctor's appointment. I was feeling down and beating myself up a bit and my husband looked at me with love in his eyes and simply said, "recognize the victories". It made me pause. It stopped me from beating myself up further. The words felt more real somehow. Was it because I could actually hold the idea in my hands? 

Regardless, that's what I wish for us all. I send out these ideas out to you, because everyday we deserve recognition for what we've earned in doing what we do. With courage and grace. With kindness and lightness. Because everyday there are victories to be noticed and celebrated, every single day, for all of those who just deal. For everyone who just keeps at it. For all the people who keep showing up in spite of and because of diabetes. 

living life.

 

I saw my doctor this week and it was an unsatisfying visit to say the least. More struggles with my A1c, quite a shock to me given the low day to day blood sugar readings I've been getting overall. Nothing terrible, just not what I'd expected or would prefer. It's a few days later and I'm over the shock now. I've certainly been here before and I know that the best you can do is do your best, which I'm doing as I basically always have. I know too that my A1c will improve, and if I'm really honest with myself, I also know that it will be up again at some point too. It's the disease you see. It's what happens. I know this in my head (though I admit I still struggle with it in my heart).

I understand that I'm hard on myself and have high expectations. I understand that I need to find the right balance between good control and letting diabetes taking over my life. My doctor said as much. "What do I need to do given this A1c? Should I go on the sensor? Take more blood sugars?" My doctor, who means well, who understands me after all these years, who understands the balancing act we face as diabetics, basically replied, "do nothing". Just keep doing what you're doing and live your life. "Live your life". Literally, that's what he said. 

I understand what he's saying and I strive for that. A good life regardless of diabetes. Or maybe because of it. I consider this a lot. And I try to let things go. But days later after the visit, I find I'm still struggling with the contradictions of my meeting with my doctor. A1c up, but don't do anything differently. Live your life, but keep you diabetes in control. I know that I can do this, that in fact it's what I do already. It's what I've done since I was diagnosed. I know this fact, but I still feel uneasy about it. I get that you just have to let go of the worry to live well. But I'm always wondering what and how much I should let go. Is it a slippery slope? If I give up caring about an A1c I'm not happy about to "live my life" will I give up caring about carb counting or a 280 blood sugar over time? Given the years that I've been doing this very delicate dance between caring and not, I'm not sure what the perfect place between them is. I'm frightened by the physical and emotional cost of not knowing that place for sure.

So where I've landed is I'll keep focusing on blood sugars, carb counting and correcting. Of course I will. It's who I am. I'm also thinking about going on the sensor again, maybe after the next A1c, depending on the result. I'm also going to continue try to accept that this is what diabetes is. Not a grade, just a disease that flows and changes. I live a life, a good life, with a disease that flows and changes. A life I love but also struggle with. One that is good in spite of AND because of diabetes.