aiming for grace

My new blog about Life with Diabetes.

Hello all! It's been a long hiatus. Rather than taking up where I left off on Aiming for Grace, this new blog will focus more on ideas around chronic illness and challenges associated with it. I'm particularly interested in the psychological side of life with disease, with a focus on living the best life possible regardless of Diabetes. Or perhaps, because of it. Life with Diabetes and chronic illness offers a very particular journey, frought with unique issues and opportunities and I'm interested in understanding it better, if I can! Which means looking into the latest research about human behavior and new insights into the mind as well as exploring how people cope with health issues through creative expression and the arts. Where before in my last blog, I was focusing on coping personally, I'm not interested in collecting smart insight and examples to help me braille my way through this process. I accept what is, in terms of having this disease. I'm now more intersted in using it as a jumping off point for deeper understanding and insight.

Additionally, over the past few years I also become aware of the power of the narratives I tell myself about my journey with disease. I'm more and more interested in the idea of using story to literally change my experience with Diabetes. In other words, I'm deeply curious about the power I possess to move beyond simply coping to living fully and well with Diabetes.

Insight, story and creative expression. I hope that these ideas will drive the content of this new exploration of life with chronic illness. That's the goal at least! I'm excited to see how it all turns out! I hope you'll check out the new blog Diabetes Considered.

RxArt helps.

This makes me so happy. RxArt is a non-profit that brings contemporary art to life within hospital settings and medical clinics. We all know how strongly I feel that design really matters and the generally dismal state of medical facilities. I'm a firm believer that art is an agent of change, a healer and comforter, a reminder of what is best about the human spirit. I have found that art helps me immeasurably in times of medical stress as well as with the ongoing challenges of life with diabetes. And when I see this kind of thing, I feel like others understand this too. Just lovely!

Thanks to for me, for you for the original heads up!

  

hello.

 
It's been ages I know. Frankly, I just haven't had anything much to say about diabetes these past few months. Diabetes is just the same. Tough, mundane, unrelenting, boring, challenging, in balance, out of balance, annoying, invisible, demanding, devastating, manageable, fine, ok, depressing, inspiring, a current that links every hour, meal and day together. It's the same as it ever was. 

I find that I just can't write about diabetes these days. I find that my personal philosophy about it is shifting to one that is more accepting while at the same time, more consoling, more willing to let diabetes really count in my decisions throughout my life. I'm also beginning to really let it count more in how I see myself. To recognize the magnitude of it's presence in my life and the fact that it has profoundly impacted my life's scope overall. In the process of this recognition, a new picture is coming into focus. A bit of a longer view of this journey. I'm starting to see that I've been inside it for so long, that it's been hard for me to see my experience of this disease from any other vantage point. 

I'm pretty healthy 23+ years into this process and that's due in great part, to being so vigilant and dedicated and present with diabetes. Yes, it's been a total drag at times and yet, when I'm really honest with myself, I see that my approach has never really been up for debate for me. I set such high standards for this process right out of the shoot that I've never really stopped to give myself much credit for actually sustaining that approach to diabetes, year in and year out. I'm beginning to see that there's a real problem with this. That in not recognizing the accomplishment of staying so vigilant and engaged, means that I miss out on seeing one of the greatest personal achievements of my life. My approach actually isn't a given, it's a choice. That sitting here, at my age, healthy and full of life, isn't just a thing that "happens". It's a result of commitment and hard work and tenacity. The approach has mattered, in and of itself.

So as I say, I'm just beginning to see this idea, this view of the story, and though interesting, at this point I'm not sure what it all means. I'm not sure if it changes how I move through my life, and if it does change that, to what degree. The picture is just coming into focus. And for now, to talk about it much just doesn't feel right. Writing means editing and judging and fine tuning, and for right now, I just want to see what emerges. So I haven't written. And I don't think I will much in the near future. But that said, I'll try to post a bit here and there. To say hi or share something cool I've found. And also to say that I miss my friends here and thank you too, because knowing you're all out there, living with diabetes with grace and courage, as always, inspires and buoys me up, even if I haven't said so in a while. 

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.