aiming for grace

always human.

Diabetes is a disease that involves a lot of blood. Blood sugars, blood tests, A1C's. It's not like I'm not used to that fact. But even so, what is it about blood that can be so disconcerting? Not the tiny blood test amounts. God knows I'm over any anxiety about that. No it's more the rare occasions when I pull out a site and consequently bleed profusely, that for some reason always seems to rattle me. It happened yesterday while I was priming the pump for a site change. I was dressed for work, ready to go, with one last task to complete before I headed out the door. Change my pump. Snip, snap, I'm quick at the process now. I have the beeping pump in my right hand, while at the same time I'm pulling out the set with my left. Not even looking. A few seconds pass and I become aware of a kind of coolness where my set had been. A coolness and a wetness, though it doesn't register as wet at first. Not at least wet like water wet. I look over and I see blood just gushing out of the site I've just removed the set from. Down my hip, all over my clothes, soaking me down to my underwear. This happens fairly rarely so I'm not prepared with a kleenex or towel handy. My dear husband is camping and so there's no one around to run get a tissue. Seconds pass, though they feel like hours as the blood continues to soak my clothes, and I finish the prime and find some toilet paper. I press hard. It takes a few minutes for the bleeding to stop and then I have to clean up, change all my clothes and get to work.

Which I did. But I never quite regained my composure for some reason. I mean I was fine and all but everything just felt a little off. I was rattled a bit. Which always seems to be the case when this kind of thing happens. The brightness of the blood, the bold redness of it, the intensity of that visual, the speed to which the order of my life just goes visceral, all change the balance of the day. And by the end of the day, I'm just wiped. Tired to my bones which doesn't make physical sense to me, but when I think about it clearly, it does make sense overall. All this stuff with blood is normal for me now and yet, even after 20 years, the fact that I'm a human, a person, a creature that reacts to blood viscerally doesn't ever change. I guess when all is said and done, there's some small comfort in that. That in spite of being used to diabetes and all that entails, I'm still a creature that reacts to blood a certain way. For all that it has changed me, it will never change me completely.

chick-a-dee as object lesson.

Design should solve problems, ideally in an aesthetically pleasing way. Take smoke alarms for example. They save lives, but man, are they ugly. So ugly apparently, that some people don't use them because of how they look. Now I'm not saying I agree with this thought process, but I do understand it. My own struggles with wearing the insulin pump come to mind here. Everyday I live with a designed object that helps keep me alive, but at the same time has some serious design drawbacks. The trade off I make between great engineering and less than fabulous design, is one I am begrudgingly willing to make. But when I think of design in it's highest form, I don't think there should have to be a trade off. Design should enhance the decision to have an life saving object in ones life, not deter it. Design should make it easy to do the right thing.

Like this fabulous example, the chick-a-dee smoke detector by the designer, louise van der veld. Who wouldn't want this wonderful bird in their house, regardless of the fact that it is also a smoke detector? This sweet product leads with design and assumes engineering and function. At the very least, it takes away the excuse of making a bad decision that could lead to great harm. In this case great design not only inspires a smart choice, it also makes it hard to make a bad one. I just love this!

Thanks to the wonderful style files for this happy link!

dana's art in the diabetes made visible pool.

I just stopped by the diabetes made visible flickr pool and wow, it's just cooking along. I haven't been by for a bit so was I ever thrilled with all the activity that's been going on there. We're up to 114 members and there are lot's and lot's of amazing photos too (495 at this posting to be exact). Like this particular stunner from dana showing her incredible thesis project. I absolutely love it, both as a visual statement and a piece of art. Art like this helps break down the barriers of language and intellectualism, allowing the viewer to feel the story rather than distance themselves from it. Not only is this visually compelling, it's also so important because of the message it conveys. Wow!

I feel better already.

Here's a great example of good medical design from heal's. Smart, modern, fresh, and yes, even a little playful. I've said it before and I'll say it again: design matters! Ok, so it's not as heady as designing a pump, but you get the idea. It's all about intent.

losing this round.

This is how I felt yesterday. I got my tubing caught on a doorknob and ripped my set right out of my body. I went to replace the now dangling set from the pump, placed the inserter on a new site, let it rip and hit a nerve like you can't believe. Fire burning, scream out loud pain. The worst ever. Ten minutes later it's still burning and hurting so I decide to change the set yet again. I pull the set out and again, killer, tears in my eyes pain. What is this? It's never hurt like this before. So, I get a new set, put it in, this time without incident. But man was I soar. The rest of the night it ached where I'd hit the nerve and it ached where I'd ripped the site out with my door encounter. By the end of the night I just felt tired and beat up and well yes, like my body was a battleground where I'd just lost a round of the fight.

Artwork above by barbara kruger.

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.

diabetes twitter.

Modern life is so interesting. You've got to love this aspect of new technology. Better connections can bring support, insight, new understanding and shared experience. So very cool.

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.

being prepared and gentle.

I'm in New York City on business for a few days. I arrived yesterday after a long flight from the west coast. Luckily it was non-stop and even though I was stuck in the middle seat, it was a relatively pain free flight. I actually like flying, once I'm finally through all the security lines and stuffing of bags above my head. I like the quiet, uninterrupted time to think and listen to music and read.

It's kind of a rough time with my diabetes lately as I've posted about a few times. I was thinking about that on the plane. I was tired because I hadn't slept well the night before, trying to plan for all the inevitable unknowns of a trip. I know that sounds lame, and I'm embarrassed to admit it, but after 20 years of living with diabetes, I know that there are lot's of possible "situations" to contend with when traveling. No food served on the planes anymore, so pack a lunch. The set your changing doesn't work so it's important to bring lot's of extras, just in case. Extra food is needed for extra walking or the low that just happens because you're out of your rountine. The list goes on and on, and I try to be prepared. And then there's the extra burden too of traveling for business. Sometimes I'm with work friends who understand all the issues I face with travel and diabetes, other times not. The last thing I want is to have my diabetes be front and center on a business trip. The last thing I want either, is for something dangerous to happen. All these crazy lows lately have been scary enough at home in my own world. Add to that restuarant food, wonky schedules, more exercise, time change, fatigue, and well, you know the drill. There's a lot to consider. So I try to prepare for all the contingencies, though of course, that's impossible. You can't prepare for everything. And so I admit it. I worry (ok, so partly that's my personality, but it's not totally out of line, considering). I project what I imagine all the possible scenarios could be. I obsess the details. I feel so responsible about managing it all, as best as I possibly can.

Once I arrived yesterday, I met my new great friend for dinner. She has diabetes too. Longer than I have had it. We were catching up and I mentioned that I was having a rough time lately with my diabetes and without prompting, she said "it's just that way sometimes, isn't it?" She just knew without me having to explain. Two friends, having dinner, no need to explain the details. It's just a fact. "Diabetes is just this way sometime." And for some reason, having someone else just know that, deep in their bones, lifted a bit of the weight of the huge sense of responsibility, worry and guilt I feel (just like the kind and supportive comments on my blog from my great OC friends). The state of things are the same, but thanks to my friends knowing comment, I realized how harsh I was being on myself. In a flash, it dawned on me that it was time to be a bit more gentle. Thanks to my friends simple, heartfelt knowing of my situation, I realized I could be prepared and gentle, all at the same time .

dancing with body and mind.

I haven't been dancing very well these days. Lately I've been stumbling over myself when it comes to my diabetes. It's one of those mysterious times when things seem to have shifted. What used to work, isn't right now and so I am bumping and grinding through my days. Up, down and all around. I hate these times because of course, they don't feel good. But also I hate them because they bring out some of the less than helpful aspects of my personality. The parts that agressively want to get after the problem. A 330 rebound bloodsugar, well let's get it down damnit. So I over bolus and crash again. A 40 bloodsugar, well let's get it up damnit and an hour later I'm rebounding again. I'm not interested in 15 carbs and sitting it out through the discomfort of 15 minutes for it to take effect. What if it doesn't, I think? What if I'm damaging myself, I worry? Thoughts circle my mind like an manic gerbil in a gerbil wheel, all while my poor brain literally feels like it's in a vice. Headache, sparkles in my eyes, sweaty. It's kind of miserable all around.

It's hard for me to tease out whether I'm helping myself or making it worse at times like these. There's definitely something up these days. I'm not feeling the lows until I'm very low, which means the old liver is "helping out" when I finally do start to treat it. My doctor said if this continues, we need to have me run high a few days so that I can regain my sensitivity to lows. So I guess that's where we are now, which is fine. We wanted to see if this pattern would continue, and it has, so on to plan B. But like everything else, it's an experiment. One which has the obvious physical aspects of it (how can I get back the feeling of lows before it's too low) as well as the behavioral aspects which is the me part. The part where my personality and worry getting involved. Making it better and worse. The funny thing about this is that it's hard to notice when you get it "right" because it's just good and on you go. But if and when you get it "wrong", well then it's clear. Operator error with real ramifications. Hello rollercoaster. Hello guilt. Hello worry.

I do know that this will work itself out. It always does. I guess that's the good news about having diabetes for so long. I've been through this before and I'm sure I will again. Lucky for me, the mind that gets all bound up around this stuff, also provides the philosophical insights that help me through times like these. It's physical, it's philosophical. It's body, it's mind. Act, react. Analyze, forgive. Focus, let go. My goodness, what a dance this life with diabetes is.

postscript: Last night I tried something I'd learned from a person who posted a comment recently (though I'm haven't found the exact post to credit them yet...SORRY). When I was high after a low, I took half of what I normally would have taken to correct the high. And it worked. My mind said no, take more, but I didn't listen to it. It sounds basic, but truly, I've haven't bounced so high and low for such a long period of time, since I went on the pump. I'm kind of out of practice...so I listened to someone else who'd been through this very thing, and thankfully, it worked. Thank you, thank you, thank you to whoever you were with the great advise!