aiming for grace

good choice.

A friend of mine once told me that it's important to trust the decisions you make. You assess the things you know at the time and then you pick a course of action. If new information arises that gives you pause to "change your mind" or the direction you are going in, then so be it. It's not that you got it wrong, he says, it's just that you now have more information to consider.

This has helped me a lot. Up until this conversation with my friend, I had always kind of beat myself up about "wrong" decisions I'd made, especially about diabetes. "I should have known this was going to happen", was a refrain I'd hear, subtly in the background of my struggles with keeping my bloodsugars even and in control.

So we come to yesterday. It was a beautiful, cool summer day and I was taking a walk around the garden. I'm a avid gardener and my garden is a source of great joy and peace to me. I love it. As I was meandering around I saw a weed here and pulled it. Some grass where it shouldn't be so I pulled it too. Soon I was on my knees digging, cleaning up, dead heading roses, all the things that gardeners do. One hour passed. And then another. It was so great to be outside, to strech my still recovering shoulders, to strech in general. Plus there was a ton of work to do as I looked closer, so I dove in with full force.

While my hands were full of weeds, a niggling thought kept pushing at the back of my mind, that I needed to pace myself and pay more attention to the amount of work I was doing. Countless afternoons of gardening have resulted in late night lows, hours after the work is done. I heard the warnings and I gently pushed them away, out of my mind for a while. And an hour would pass and they'd float back in and again, I'd push them away. Because at the moment it felt too good to stop. It felt so good to use my body and be in the garden, outside in the cool, fresh air.

And of course, I was up last night with a big low. I ate extra fat at dinner, with the hope that it would counteract all the exercise, a technique that had occasionally worked in the past. But it didn't and there I was, stumbling in the night to get milk, jamming 2 cookies in my mouth and then lying there, waiting for my mouth and tongue to stop being numb.

This morning I woke feeling tired and stupid and mad at myself. I should have made different decisions. I should have known better. And maybe that is so. And maybe I did have all the information and I still picked the wrong course. But with diabetes I never know for sure what the outcome will be. Generally I can predict it will do certain things, but not always. So did I really have "all the information"? Is it ever possible to have it all? And even if I did have it all, the bigger question is, was it the wrong course, regardless of the outcome? Would I have forgone the wonderful day I had yesterday, to avoid the low I had last night? Truthfully, probably not. And that's the rub with diabetes. It's not that you can't live with the consequences of all the choices you have to make. It's that with diabetes, small choices can have profound physical reactions. On some days that's bearable, on others, not so much.

So I'm left with my friends wise counsel and also something I've learned from many of Scott's comments to my blog, which is that I need to cut myself some slack. It's not some character flaw that I chose gardening "over" the possibility of a low in the night. I have diabetes which adds a slippery world of variables to a life full of desires, goals and choices. I assessed, I hoped, I may have even fooled myself about the situation. But I'm not a bad person because of it. That part, the recriminations and judgements, I can let go of. In the end, you weigh the options and then you choose. I chose gardening yesterday and I'm trying a new response, which is "good for me".

sassy where I can be.

Ok, in the spirit of having some fun with the products we need to keep us healthy and happy people with diabetes, I'm trying a new widget (aren't you impressed with how tech savvy I am) that typepad has been promoting these past few weeks. It's called stylehive and basically, it's a way to collect links to products you really like, put them in a "place" that allows others to review (with the links to the sites of those products featured). I'm not selling anything. It's just kind of like I have a favorites page of things and links I really like. That's it. Could be fun. Could be dull as dishwater.

And it fits into a bigger scheme of mine, of course. In all my talk about my issues around design and human interface and diabetes, I realize that I am focusing a lot on the design that doesn't work. And though a lot doesn't work, some stuff does, so I'm going to call that stuff out and celebrate it. I've also been talking about how much I dislike all the products I use screaming "medical" or "sick". Well I can't really affect the design of my pump or meter or test strips much from where I sit (beyond my continued, respectful, nudging posts). What I can affect is the aftermarket stuff: all the products I need to put all my diabetes stuff in, all the logs and journals I collect my data in, all the things I can choose to surround all the products I don't have any choice over.

It's in this spirit, that I am going to launch my little favorite diabetes stylehive products link. I'm going to have fun where I can because goodness knows, the design of most of the stuff we deal with, just ain't that fun. So I'm going to be sassy where I can. Shop on.

starting with a call.

I've been thinking alot about the recent veto of HR 810 by George Bush. Thinking is putting it mildly. Fuming, crying, feeling numb, amazed, not surprised, resigned, enraged. You know, the whole rollercoaster of feelings. I was thinking about how much I hate the reality of medical research as a political pawn. How wrong that is, and yet how it has also been the case throughout history.

Beyond the frightening moralistic excuses given, Bush's veto of HR 810 feels so un-American to me. So anti-progress and advancement. So backward and misguided. When have we ever said, "no, I think we'll pass on innovation or medical advancement or progress?"

And as if that isn't enough, the "reason" given for his action, is couched in the language of drama, diversion and escalation, with Bush's spokesman saying the president considered stem cell research to be murder, rather than what it actually is, which is the use of existing fertility clinic stem cells alread slated for destruction. I am so tired of being manipulated and handled. I am so tired of other people (who's values I do not agree with) having the power to frame up the conversation from their viewpoint alone. I was struck by the press conference Bush staged after the signing of the veto surrounded by the "snowflake babies", that the ramifications of his actions, the results of the diversion of my tax dollars from stem cell research, did not have a face or name or time on national tv. All the children and adults who are being diagnosed today, next week, next year, all the courageous people who have lived with this disease, day in and day out for decades, well, they don't have an image. As far as this veto is concerned, we are invisible and quiet and deniable.

I loved Kerri's recent post about all this. Eloquent, smart and moving, as always. I also loved people's responses. It felt good to know that I'm not alone in my sadness and frustration. And all that I read makes me want to act. So the first small thing I'm doing today, now that I'm feeling less numb, is I'm calling all my congresspeople and senator's, Republican and Democrat alike, to thank them for voting for overriding Bush's veto (in Oregon, the entire delegation voted to override the veto). One call in a congressional office is counted as 10 people feeling the same way, so calling really makes a difference. I'm going to thank them as a diabetic. One real person, who was affected by their vote. My one voice to their ear. It's a very small start, but a start nonetheless.

less choice can be freeing.

My husband and I are not great cooks. More precisely, we are lazy cooks. I am at my best as a cook, when the dish is about assemblage. Salads, sandwiches, pasta. I've never been that moved by food, even before diabetes. I like it, of course, but it isn't one of my driving passions in life. And frankly, I'm kind of picky as to what I like, so the range of my favorite food choices is considerably narrower than most people's.

Which brings me to the subject of what my husband has affectionally called "prison food", which sounds far more punative than it actually is. In fact, "prison food" is quite the contrary. What he is refering to, is the 5 or 6 simple meals we make consistantly in our household. These dishes are the core of my diet as a diabetic. They are the old standby's when my bloodsugars go wonky for no apparent reason. They always seem to work so when I need some variables removed to figure out what's going on in the bloodsugar department, it's time for a little prison food. And even when it isn't a wonky time, I like these dishes, so I stick to them. Not every night, but often enough. It's kind of liberating too, to have one area where there isn't so much pressure to figure it all out. Carb counting, fat content, hidden ingredients. You know, more details to consider. With these dishes, it's already figured out and accordingly, eating is less stressful and unpredictable. So please pass the turkey sandwich and the shrimp salad because my thought is, if it works, why change it?

And as a funny side note to "knowing what you eat", check out these 2 guys who have documented every meal they ate for one year. One them, Tucker Shaw, made his exercise into a book, everything I ate: a year in the life of my mouth, which is actually pretty interesting, believe it or not.

what are you telling me?

At the end of the day, we want and expect all the diabetes products we use to work. We are blessed with the fact that there are people out there who make that happen. They design pumps to deliver insulin 24 hours a day, customized to each persons particular body rhythms. They engineer recombinant dna insulin to make the insulin we take the same genetic makeup of human produced insulin. They design implantable sensors that read our bloodsugar's every 5 minutes so that we can see the way they are trending, thereby allowing us to make more accurate decisions than ever before. Our lives are significantly better because of the way these scientists and engineers see the world and the work that they do.

But there is something missing between the amazing work they do and me, the patient, the user, the consumer. These products are designed to make my life better, more livable day to day, more "normal" if you will. They are designed to help me keep my diabetes under the best control possible to avoid longterm complications, but right up there with that goal, is the idea that diabetes should not "limit" my ability to live a full life. A healthy life. It's possible right? That's what the doctors and nurses and literature all say and yet, when I look at all the diabetes products I use every day, I feel like I'm being told something very different. When I look at the way the pump sets and test strips and the glucose monitors and the needles and the alcohol swabs are designed, packaged and graphically communicated, I feel like I'm being told that I am sick. Use all this MEDICAL stuff designed for sick people, and you can live a healthy, normal life. Everything I touch and encounter around diabetes says clearly, loudly, that I'm sick.

And of course I am, in the sense that I have a chronic illness, and especially if I don't take care of myself. Unlike other diseases, I can manage my disease best if I thoroughly integrate it into my life, normalize it, and accept it. Imagine how much easier that would be if all my touchpoints around my care weren't screaming at me that I was sick. Imagine if the packaging was more normal or special or even reverent. Apple is a perfect example of what I mean. Everything, and I mean everything, is considered. Every touchpoint, every package, brochure, website, service. Every time I encounter the brand, I'm reminded that they care. They know that everything they make communicates something about their brand, their desired relationship with me as a consumer, and quite frankly, how much they value me. Whether it's true or not, their aesthetic, packaging and attention to detail, communicates that they value and respect me as a consumer. Enough to sweat the design details. Because the details really matter. Apple shows that the job isn't done when the amazing technology is complete. They show that there is a lot that can be considered and designed between the technology and the people.

So my question to all the companies that make all the diabetes products I use, what are you telling me? Whether you mean it or not, you are communicating something. Are you saying I'm a sick person who needs to be communicated to like a medical patient? Or are you saying I am I a healthy and fully whole person who happens to be living with diabetes? I would offer up that depending which answer is chosen, the design brief for all the wonderful stuff the scientists and engineers have made to make life with diabetes better, would be very different.

And, PS. Of all the companies doing diabetes medical design, I really do like Novolog's look. Simple, streamlined, modern, adult and not pandering. It still feels medical but at least it's groovy medical. My 2 cents, for what it's worth.

never totally off.

Well it's getting close to the middle of my sabbatical and yes, I'm feeling significantly more relaxed. I had no idea how tired I really was, how wound up I am for the daily work adventure, how much I still needed to recover from my shoulder surgery from last spring. It has been wonderful and surprising. Quiet and unrushed as the day unfolds. The day unfolds. I haven't known what that felt like for literally decades. It's quite a remarkable thing!

But. But, the slowed pace seems to be impacting my bloodsugars. It started late last week and I'm thinking I'm seeing a trend. I'm having more lows, during the day and at night. I'm thinking it's because I am less "stressed" and more relaxed and so it's taking less insulin to do what my body needs it to do. I'm trying not to get bummed or distracted by this. I'll take more blood tests to see if in fact, it is a trend. Plus with the pump, the good news is, it's pretty easy to tweak as subtly as needed.

Hm, and while we're on the subject of "trends in bloodsugars", I'm seeing my fabulous nurse at the clinic today, to talk about possibly trying one of the new glucose monitoring sensors. Which might really be the ticket for a situation like this. Changing routine, more information. Sounds good. I've been encouraged by diabetes mine's experience with the DexCom and that of the others who have commented on her posts. It sounds great, and who doesn't want more accurate data about trends in bloodsugars? It will be easier to sync up insulin to my bodies needs plus I'll be able to catch highs and lows before they get too high or low. I know a will want to go on one of the sensor's out there. I'm just not sure when.

I'm torn. I feel a bit sad about having to learn another new technology, especially on my vacation. Funny, but even as I write this, I realize that my grumpiness is really that my vacation isn't also a vacation from diabetes too. A vacation from all the jobs in my life. I'm sorry to be such a whiner, but I guess I'd hoped (deep in the irrational brain) that this time, I'd get a vacation from diabetes too. Kind of silly, really.

Postscript. I checked out the sensor at the clinic today and though it is amazing and I'm definitely going to get one, I've decided to wait until after the vacation. Pace my dear. Take a few more blood tests, pull back on the insulin. Pass the cold, fizzy water please. There is plenty of time to reach the next technological level. For now, I'm going with the flow. The vacation flow...

making it real.

I'm a designer by profession, and as such, I'm a big believer in the power of things. Objects communicate, tell stories, collect meaning. A tangible thing in your hand feels real and substantial. Having said that, the web is also an amazing tool for meaningful communication, connection and comfort. The OC has changed my life in such a positive way. Regardless of being a virtual tool, the insight, inspiration, comfort, support and realization that I am not alone with diabetes has utterly improved my life.

For me, the exercise I did a couple of months ago to commemorate my 20th anniversary of living with diabetes, was very important. I don't think it would have had as much meaning if I had just done it privately on my own. 20 things I know about diabetes, really helped me to move through a milestone in a way that surprised and comforted me deeply. The format, the simplicity and the "safety" of doing the exercise as a blog within a community of people who have been so supportive and also, "get it", made the doing of it possible. Once done, I felt better. But the designer in me wanted something to touch and hold and feel, so I decided to make a small book out of the blog. I had the original files I used to make the posts, printed them out (with the help of a friend more experienced in book layout and production than I) and then took it to a local book bindery to have 10 copies made. They arrived a couple of days ago and I'm so excited. There is something so cool about being able to hold the exercise, done on the web, in my hands. I'm giving them to my doctor, family and the friends who have made the most difference in my journey with diabetes. And that feels great too, to give them something tangible as a thank you for all that they have done for me.

I think that making something tangible from all of this stuff we deal with around diabetes, can be very helpful. In reading the comments on Scott's recent post operating under pressure, there was a comment by Minnesota Nice that I thought was brilliant. She is writing down every positive thing she does around diabetes, and for each "thing" she takes a lego block and adds it to a structure of lego's she is building. By doing this, she sees her progress, she notes her efforts and success', she makes her work and dedication tangible. I think this is fabulous. Once she goes through all the lego's she has, she takes a picture of the creation, and then starts again. Boy would I love to see those pictures (sounds like a wonderful book to me)! Brilliant!

The point is, making something real out of all this can be very good (#7 diabetes is a great source for creativity). A blog is real but you can't touch it. It may be enough and that's terrific. Taking it further into another form, can be fun too. Whether it's publishing an iPhoto book of images that mean something around diabetes, or publishing your blog using a program like blog binders, or painting a painting or building lego towers, it really doesn't matter what form it takes. It can be affordable, creative and personal, shared or not. I'm just saying that making my 20 things blog into a tangible, touchable book, has made it that much more meaningful to me and others.

permission to pass.

One of the upsides the "light of day" approach to seeing diabetes affords, is the ability to recognize all the extra effort, courage and attention it takes to live. And let it count for something. If you think of it this way, every person is dealt a "hand of cards" in life (sorry about the hokey metaphor), and everyone with diabetes has been given an extra card to manage. Our hand is a little fuller than others. Most people get the "need to work/career card" and the "relationship/spouse/partner card" and the "family/parents/siblings/children card" and the "I'm so busy/time overload card". But beyond those basics, there are lot's of things that everyone thinks they have to deal with, but maybe they really don't. You know, stuff. Extra, tedious stuff, that we do because we think we have to, because everybody has to deal with some crap afterall, right?

I've been thinking lately, that maybe the fact that I have the extra job of diabetes, means that it's ok to pass on some of the stuff I have a choice about. Life is pretty challenging with diabetes (see Scott's articulate recent post) so maybe it's ok to say, "nope, I'm sorry, I'll pass on that". Or conversely, say yes to the things that bring me more joy, today, in the present. I don't mean in a prima donna, "I'm feeling sorry for myself" kind of way. I mean in the way that acknowledges what I do every day to stay healthy and engaged and contributing and connected. It's about seeing having a chronic illness as "more" rather than "less than". Because, well, all the work to do it well counts for something. Since I got the extra diabetes card, it might be a good idea to give myself permission to let go of an extraneous one. It's an interesting thought. What are the things I can let go of? What are the cards can I discard?

(And I promise to never, ever, use the lame card metaphor again. Ever.)

not being seen or heard.

Not seen or heard. That's how it felt with my diabetes for so many years. I was diagnosed at 27 so it wasn't something that my family had to deal with much. How much is seen, how much is really heard by the world, has been in great part up to me. And I've been awkward with that aspect, and at times, downright ambivalent about sharing. Getting people (even family) to understand what diabetes is and what it MEANS to my life takes a lot of explaining. Science, biology, chemistry, psychology all need to be addressed. There is so much to explain before you even get to the possibility of understanding. And quite frankly, it's not always understood even after all the explanations. Or it's forgotten. Or it's ignored because it's not in front of the nose all the time. I've struggled with feeling very invisible.

And then I discovered the OC and with that came the amazing relief of visibility and knowledgable understanding. As well as encouragement. From people like Scott or Kerri or Andrea among others, who have all commented on some post, with kind words of support and encouragement. What an amazing difference that has made. And what a great feeling it is, to finally have my diabetes journey seen and heard by people who "get it" in such a personal and profound way.

it's looking MORE like a bowl of cherries.

Summer's here in full force. So beautiful and relaxing, 1 week into vacation. It's amazing how much better you feel after some time to slow down. Sun and small adventures and more time off, streching before me, really helped me to forget about diabetes these last couple of days. There are the usual bumps and tweaks but overall everything feels smoother. I don't know if it's the less frenzied schedule or my less frenzied attitude, but regardless, so far so good. I'm feeling like maybe this sabbatical will go better than the last one, thanks to the pump. Fingers still crossed and a bit more hopeful.