aiming for grace

wish lists and observations.

Design matters. Alot. Design solves problems and communicates and makes life better.

I've written a couple of long posts about design and diabetes in the last couple of days, one that I didn't post and one that I did and then deleted. It's not that either of them were wrong or inappropriate. It's just that when I read them, I didn't like the tone. They sounded whiny and complaining. And I don't want to go there, if possible. I do feel whiny and complaining when I think about the physical design of my pump or the packaging of all the supplies or the lack of creative attachment options. But you know what. The gratitude, the absolute amazement at how well the stuff works, always overrides my nagging frustration. Back and forth I go between real gratitude and resigned acceptance. But it occurs to me is that there is another option here. And that is constructive, positive, respectful feedback about the design of the stuff. Say what works, what doesn't, what I wish I had, what I wish was different. It's not about criticism, but rather, some observations and a wish list.

I believe design really contributes to the quality of life. It really matters how an amazing, life altering, engineering wonder like the pump integrates into real peoples lives. It took my 5 years to make the leap and some of the factors that held me back were, at their core, design issues. Now that I'm on the pump I can't believe it took me so long to reap the benefits of all that it has to offer. And yet still, I think it could be improved. So I'm adding a new category to capture thoughts about design of the all the stuff that comes with diabetes, all in the spirit of honest feedback rather than the cranky, complaining place I've been in the past.

smelling summer.

My shoulder got me up last night. I'm starting strength training now that I'm pretty healed up from the surgery and I'm trying to take it slow. But it still hurts and especially at night. But I don't care that I'm tired today. It's one of those spectacular summer days, warm, breezy, with the scent of honeysuckle and roses in the air. Being tired means that I'm actually sitting still enough to feel the day and it is a wonderful one to say the least. It's a day that all the struggles pale by comparison to the beauty of world. Breath in and smell the fragrance because it's all ok today. I love days like this when it just doesn't matter that I have diabetes or shoulder issues or a hang nail. I love it when I remember how great life is regardless.

I'm not going camping, but thanks anyway.

I just read the great post on Kerri's six until me blog about wearing a gorgeous dress and trying to hide the pump. What a perfect, funny, poignant description of all the things that the designers of the pump have forgotten to think about. Don't get me wrong, I am forever grateful to the engineers and designers who have made the pump so reliable, accurate and freeing. I am living a better life because of the pump. So a huge thank-you first and a now a couple of questions. Why stop the design exercise there? Even if you can't change the shape or the hard material the pump is made of, why not at least figure out how to better attach the pump (I think I've broken about 5 of the clips since I got my pump) to us. What's that all about? And what about the ridiculous accessory choices (or lack thereof)? It's like the pump was designed for waistbands only and oops, we forgot that there are people out there who have diabetes AND wear dresses. And so we get straps made out of nylon and velcro to attach the pump to our leg like some kind of weird garter, as if we're going on a camping trip after we dance the night away. At it's core, design is about problem solving and making people's lives better. And these small things actually really matter a lot. Because it's about quality of life and not feeling burdened (or medical) where you don't have to. It's about getting to enjoy dressing up without being faced with an engineering dilemma. Please! Diabetes is tough enough so let's figure out the easy stuff. After all, they figured out how to make a pump, so this shouldn't be too hard. You think?

PS. I loved Lyrehca's bike short call out. Who knew? Great call!

is it the moon?

I've been having some troubles with my bloodsugars lately. Highs after dinner for no apparent reason. And then I remembered this morning that this often happens at the beginning of summer. Routines change. Allergies flare up as some wonderful plant blooms and sends my eyes into an itchy frenzy. Exercise patterns change. We eat a bit later than in the winter. It's not one thing; it's lot's of little things that add up to less than wonderful bloodsugars. And it's at times like these that I start the debate in my head as to whether I should do something. I'm a do-er in the rest of my life, and that quality has at times, made things more complicated when I'm faced with this particular dilemma. My first instinct is to start to adjust my insulin, bolus' first then basals. But I'm not sure if the elevated bloodsugars I'm experiencing are a pattern yet, so I'm not sure whether I should start tinkering. It's amazing how much of diabetes management takes place in my head. How much of the doing of diabetes starts with the running of scenarios. Is this a pattern? If I do x, will y happen? Or z?

Because diabetes is a very physical disease that requires a lot of mental attention, it can be crazy making when it's not always clear what's up or what the coarse of action should be. Or if there should be action at all. And so the ruminating begins. The writing of cryptic notes. The random questions to my husband. "Could it have been the SIZE of the slices of bread I had in that sandwich?" "Maybe it was the new salad dressing we tried?" "Or maybe I sat too long in front of the computer today?" "Or it's my allergies or the phase of the moon"? Each question gets more random and the weird thing is, any or all of them are plausible. In the end, it usually works itself out. Either the unpredictable bloodsugars are an anomaly and they correct themselves, or they represent a change in my insulin needs and I figure out what I need to do over time. It takes patience and well, more patience. And sometimes I figure out what the cause was and other times I don't. At times like that, I imagine that maybe it was just the moon.

fingers crossed.

In a couple of weeks I get to go on a six week sabbatical from my job. It's one of the great perks of where I work and I'm totally excited about it. I have lot's of small adventures, art projects and blogging entries planned to pass the time in between naps and doing nothing. This will be my second sabbatical and I am really hoping that it will go better than the last one. Unfortunately, the first one was less than relaxing because of my diabetes. I was not on the pump at the time and the dramatic difference in routine from working to not working, totally threw off my control. I was up at night, chasing bloodsugars throughout the day, talking to my doctor a lot and generally miserable overall. But this time I'm on the pump and I'm hopeful. The focus of this time off is health, adventure, relaxation, strengthening (of the shoulder), walking a lot, rejuvenation and fun. I'm hopeful that I can do all those things better this time around. Fingers crossed, here I go.

the courage of others.

Yesterday on this american life I heard Julia Sweeney talk about her experiences with cervical cancer. It was very funny and very disturbing, all at the same time. She delivered the monologue in this hyped up, frantic way, laughing nervously throughout, which added a deeper feeling of tragedy to the already dark, gallows humor of the piece. I'd seen Julia Sweeney's amazing movie, "when god said ha!", a number of years ago and I was again struck yesterday, with admiration for the courage and rarity of her voice, or any voice for that matter, in speaking of the surreal aspects of dealing with disease and medicine. Of course Ms. Sweeney's particular experience with cancer is very different from mine with diabetes. And yet there are also broad similarities. She starkly and eloquently, without any sugar coating, spoke to the bizarreness of being placed in the world of medical procedures, protocol and treatment (all with the additional terror of a life threatening disease). It was both comforting and shocking to hear her story expressed so plainly and truthfully, all in the light of day.

I remember when I was first diagnosed, being shocked by the world I had entered. I couldn't exactly pin down when I'd moved from one side of the curtain to the other, but it was very clear that I had crossed into a different world, pretty soon after I was diagnosed. Suddenly there was a new language to learn and a new set of rules. Things that I had never known existed before, were now critical to my survival. "Did this Alice in Wonderland world exist all the time and I just didn't know about it before?", I remember thinking. And of course, the answer was yes. Yes it had, for thousands and thousands of people before me and many thousands after me. It's a strange world we inhabit. Strange and invisible a lot of the time.

And so that's why I'm grateful to Julia Sweeney's "this american life" piece and her movie because though I don't necessarily like seeing what she has to show, I'm so comforted to know that someone else has brought their experience to the light. Through their voice. And for that, I applaud her and am very grateful.

* A note of caution. The "this american life" piece with Julia Sweeney, is very explicit in its subject matter and descriptions of treatment.

itsy bitsy spider...

I got bitten (several times) by a spider (I think) earlier in the week. Wow! That's not so fun! Beyond the itching and aching, my blood sugars have been kind of wonky since and I don't know if it's because of the bites or something else. The lack of definitive answers is one of the things that drives me the most crazy about having diabetes. I know that the bite has affected me and the doctor thinks I'm probably having a minor allergic reaction. Which means my immune system is at work, which means a "change", which means blood sugars can be affected. And my blood sugars have been higher so I guess it could be the bite... or else the chinese food I had for lunch one day or a combination of the two. Who knows? Who ever knows. But that doesn't stop my mind from asking the question a bunch of times throughout the day. "I wonder if my blood sugar is high because of the spider bites? Or maybe it's the chinese food. Or maybe its...." You know the drill. Nothing is just what it is with diabetes. It's never just a simple spider bite.

being open.

I have a wonderful friend at work who doesn't have diabetes. She is a very kind and sensitive person and has felt like someone I could be open with about diabetes when it naturally came up. Like when we are traveling together for instance. Or when I told her about the battery failure in my presentation last week. Or when I was dealing with having surgery. She's been a kind and good listener.

This morning she told me about how she and her husband were at her preschoolers orientation this weekend and that the young woman who was showing them around the school had a pump. She wanted to tell the woman that she knew about insulin pumps because of me. But in the end she decided not to because the focus was on her son and his new school.

Regardless, it made me feel good that she noticed the young woman's pump and that she wanted to say something. It made me feel good for the young woman that someone who didn't have diabetes noticed that she did. I'm glad that I've been open with my friend about my diabetes and that in turn, she understood what it means for someone else. In my mind, it's better when being diabetic is noticed, considered and normalized. And openess begets normalcy.

outside in.

What I realized about the post below, is that there was a process I had to go through to become comfortable with the external object and symbol of what had, up to that point, been a internal thing. My diabetes was something I grappled with privately, so that I would appear whole and not less than. The goal was to be as normal (and as I've said before, "non-diabetic") as possible on the outside. For a long time too, that internalization felt a lot like shame. Like I'd failed somehow (by getting diabetes) so I needed to keep it to myself. The only way someone would know is if I told them, and I struggled with when and if I should share all the time.

What the pump has done in a very tangible way, is moved the fact that I was diabetic from inside of me to outside of me. Quite literally onto my waistband, there for the world to see and for me to bump up against a thousand times a day. Like when I am getting into the car or going to bed or dressing for the day. Or when I'm seated on a plane or at the gym or trying on clothes in a store. It's there. Hard and demanding and in the way.

And even so, it's still better than it was before. Of course because it's flexible and my diabetes is under good control. But also it's better because I now can see my diabetes in a different way; from outside in and for whatever reason, this feels a lot better than before.

5 years to decide.

I have a new friend who has diabetes but is not on the pump like I am. She asked me about being on the pump and whether I liked it. And I raved about it, predictably. Raved about how much better my life was since I'd gone on it. Raved about how much I loved it, in spite of it's clunky, less than perfect design.

And I told her about how it took me 5 years to decide to go on the pump. For lot's of reasons. Fear, loss of control (better the evil we know...), lack of exposure to anyone else who had a pump, were all factors as to why it took so long for me to make the leap. I was thinking about all the reasons this morning, thinking about my friend who's considering the pump. And it occured to me that there was another reason too. It's that the pump is a physical thing, a tangible badge that says to the world and says to me, that I have diabetes. Well I think in all honesty, that was the thing that took me the longest to understand. It wasn't a conscious idea or anything. I just wasn't ready yet to totally accept that I had diabetes for good. So it took 5 more years to get used to the idea and when it finally dawned on me that I couldn't do diabetes "perfectly" and there didn't seem to be a cure around the corner, I became more open to going on the pump. And now it's ok for me (and others) to see the physical badge that says that yes, I have diabetes. In fact, it's more than ok. Now it feels like its the way it is supposed to be.