aiming for grace

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. 

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.  

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.

no budgie for me.

I've always loved birds but have never been able to bring myself to own one. This morning I realized why.

Last week was frustrating for a number of reasons. The usual work stuff, people, politics, everyday things really. That coupled with an underlying anxiety about the state of the economy that everyone is feeling and well, it was just a tense week overall. My team also moved their offices to a new configuration last week, more open and thankfully, up against the windows so we now all have a beautiful view of trees and sky. I'm loving the new lay out though getting there exacted a particular, physical toll on me. Five insulin reactions on the move day. Five! It's not like I was moving boxes or anything. No I was just getting things organized, moving this pile here, my rolodex there. As my coworkers settled into their new digs, I did so while battling the dull headaches, sparkles in my eyes and vague disorientation of low blood sugars, one after another. 

In the middle of that night I had a hefty rebound from all those lows. Nothing dramatic, just the usual kind of thing that happens after a day like that. The next day was ok, but I was tired. Again, nothing dramatic, and again, just the usual kind of thing that happens with diabetes. Up and down, lows and recovery. And so it goes. I used to get so sad about this and do so still at times, but far less now thanks to blogging and a new, deeper acceptance of my life as a diabetic. No, more than anything now, I can recognize what's happening, note it, and then get on with life. It's better this way. Much better.

A couple of nights ago though, I did came home very frustrated and upset. I laid down on my bed before dinner and cried. Just let it out. All the anxiety, the fatigue, the heightened emotions of the week. After a few moments I got up and washed my face and sat down to dinner with my husband. I walked him through my day, my week, my feelings. I ranted about the need for meaning in my life, my classic mid-life dilemma. "Is this as good as it gets", I asked. "I've been such a girl scout, a model diabetes patient, a great employee my whole life and this is as good as it gets?" Never mind that I was tired and frustrated, at that moment everything felt dark and confusing.

And then my husband said something that shed new light on the situation, as he's done so many times before. "You know, your life is a little like that of a caged animal, in great part because of diabetes." Huh? I was stopped in my tracks, captured by the images those words brought to mind. A beautiful bird in a cage, alive and singing, but not able to fly. An exotic animal in the zoo, pacing from one end of its enclosure to other, back and forth. With that one sentence the conversation stopped and I thought, yes! Yes, that's how it feels at this point in my life, mid-life, with all the normal stuff that comes with this stage. The time of reassessment, the search for meaning in my life and work, the poignancy of the idea that if all goes well I still probably have less time on earth ahead of me than I've had so far. Natural stuff for this time in my life all made more significant by 22 years with diabetes and all the little limits that add up to a less spontaneous life. Yes, I'm alive and lead a full, rich life. It's a very good life. But yes, too, it's been a bit like a life in captivity, a life with sharp edges and physical limits and a set of rules the wild animals don't have to contend with. Food comes on a schedule, exercise is prescribed and if you're lucky, you get all the medicine that's needed to stay well. You can live long and with health, but its always within the limits of diabetes. 

As I said at the beginning of this post, I've always loved birds but have never been able to bring myself to own one of them myself. For me, keeping a bird in a cage has always felt wrong. I don't fault others for doing so and I understand that lot's of birds have been raised in captivity and don't know anything otherwise. But I've never been able to quite make the leap that all the wildness of birds is gone and that they don't really yearn to fly regardless of how they've been raised. So though I adore birds and would love to have them in my house, I just can't bring myself to do so. What I realized this morning is that maybe it's because somewhere deep down inside I know how a bird might feel in a cage. Who knows if I'm right about that but for me that's where it comes to. I can empathize. I think I know how it might feel. And given that knowledge, that feeling, in my life where I can, there will be no birds in a cage.

Photograph by one of my favorite artists, luke stephenson.

looking on the bright side.

 

It's the New Year and a time for reflection and promise. I've been trying to think about my diabetes differently lately. Less of a place of sorrow and regret and more of a source of creativity and possibility. More of a reason to have the best life I can. It occurred to me a few months ago to try an experiment. I asked myself, "what would it look like if I flipped the premise I've been living with to see what diabetes is giving to me as compared to what it takes from me?" 

Wow, now that's a question! Now let me just clarify for a minute. I'm not going all pollyanna on you here. I'm not saying it doesn't take, but rather that it is undeniably here in my life so the question becomes, how can I use that fact to make my life better? 

Let me give an example. Travel remains a source of real challenge for me. I can do it if necessary or the pay back is well worth the inevitable diabetes struggle I must endure in the process. Check, I get that. I also hang with a crowd who loves to travel, seeing it as the modern form of adventure and a huge source of creative energy and insight. It's what they strive for and it's what they talk about a lot. Where they've been and what they've seen in their travels is the currency of their lives. Which means I'm left feeling like my life is somehow less than everyone else's because though I'd love to travel, I don't do so that much because it exacts such a profound toll on me on physically. I'm left feeling like I'm not as creative or hip or contemporary because I find not traveling is so much better for my health.

So a few months ago I decided to look at my travel situation in a different light by asking myself a few questions. What does staying local over long periods of time offer up as an advantage to me? What can I use the time, money and energy I'd spend on going elsewhere to enrich and develop my day to day life here? Who are some other people in the world (and throughout history for that matter) who've lived rich and creative lives while staying close to home that I can look to for inspiration? 

Once I started to consider my situation from this vantage point the tone of the conversation in my head totally shifted. Honestly. It seems so simple but it's taken a long time to get here. Suddenly, I began to see my day to day life in a very different way. For example, instead of continuing the ongoing debate I've had in my head for years about whether I should build an art studio in my basement this year for Christmas, I asked my husband to build me the tools I needed to start screen printing at home. 4 weeks later, I have a screen printing studio where there was nothing before. This year, during the raging winter storm we had over the holidays, I began learning a new art adventure right in the confines of my own home. It proved to be an adventure as rich and creative and exciting as going to a new place, all without the blood sugar roller coaster or the jet lat. It was really amazing!

What a revelation! And what good fodder for a few diabetes focused New Years resolutions to expand into the coming year. I've never done resolutions specific to diabetes before but given the power and results of this experience, I think I'll give it a try this year. So here goes 2009, let's make it a great year regardless and because of diabetes in my life.  

I will have more diabetes friendly adventures close to home.

I will be more gentle on myself because I have diabetes. I will let that fact count for something.

I will accept that diabetes is an undeniable part of my life and as such, will find the advantages it offers.

I will bring more creativity, fun and positive influences into my life because of the presence of diabetes.

Though I know I won't always succeed, I'm going to try more to look on the bright side of this journey.

Happy New Year everyone! May your year be full of comfort, health and happiness!  XO Birdie

tired of the job of diabetes advocate.

 

I just need to complain for a minute.

I get tired of having to always be my own diabetes advocate when it comes to dealing with the rest of the medical world. I'm shocked at how universally inconsistent these trained medical professionals are when it comes to diabetes. Which is annoying most of the time and downright scary when it comes to dealing with medical issues other than diabetes. Without going into the gory details of a recent procedure I had to undergo, suffice it to say that I spent a good deal of time and energy down field blocking with the medical institutions I encountered, all while at the same time doing what every other non-diabetic has to do before this kind of test. I called beforehand to several people, receptionists, nurses and in-take personnel, just to be sure that they knew that I had type1 diabetes and that I would be arriving in the morning having not eaten for 24 hours. I called to ask my doctor and the doctor who would be doing the procedure for the protocol if I went low the night before having not eaten all day (which I did). I called to figure out how much to reduce my basal rate to deal with the lows, not once but twice because I continued to float downward over the course of the evening. At 11:00pm the night before the procedure we even discussed whether or not I should go to the hospital to get a glucose drip if my blood sugars didn't rise soon. It was a lot of work to say the least.

In the end, everything worked out. It worked out because I consulted with lot's of people and asked questions and insisted on engagement. I was nervous going in so I called on my medical resources for advice. We scenario planned. On the actual day, we did some more tweaking because it turned out that what I suspected would happen, did, in spite of the fact that everyone else predicted otherwise. At the end of the day it worked out because of persistence and focus on my part to make it so. Work on top of going through a very unpleasant procedure. One that thousands of people have to go through, yes. I just had to do it with a job on top of it. Diabetes advocate. Diabetes educator. Diabetes patient. Diabetes pest. Diabetic me. 

I get that I have to do this because I have diabetes. I accept that. But I also need to say that it tires me out, this job of advocacy. It leaves me weary. Yes, indeed it does.

There, complaining done.

excuse me.

It's funny how our mind works. I've been hit hard by a nasty cold. A nasty, nasty one, right off the heels of a week of early morning presentations and late night election revelry. Add to that cocktail, sneezy, cold infested coworkers and well yes, the minute my presentations were over, it felt like I'd swallowed a handful of razor blades. That was 4 days ago and I'm still enjoying the migration of symptoms from my throat to my head, nose and then chest. It's lovely.

But back to my point about the mind. I realized this morning, as I was surfacing from the coughing, sneezing fog, that I always feel a little put out by these common ailments that inevitably strike us all. It's like huh? A cold. For me. Excuse me? Haven't I fulfilled my "sickness" quotient and then some, by having diabetes? Don't I get some kind of hall pass for this kind of thing? I mean really!

But of course, that's silly. It kind of made me chuckle when I realized how absurd I was being. But still, I also get it. I understand the negotiation I'm having with the universe. I understand the feeling of "having paid my dues". It's my primal mind, my child mind, trying to make sense of it all. It's kind of sweet. And yes sad too, because of course, that's not how the world works, now is it.