aiming for grace

a re-design brief.

I keep saying that design matters. Well lately I've been thinking about what I would do if I could redesign the insulin pump. I know that engineering matters first, but for this exercise, let's assume that the engineering works. At this point I'm interested in what I would actually change to make an insulin pump better. Better to live with. Better to interact with. Better integration into everyday, 24/7 living. What doesn't work? What bugs the crap out of me. What is the actual design problem?

A friend of mine who's an accomplished designer put it perfectly. Don't focus on the solution. Define the problem. So that's what I'm going to do. I want to create a design brief for the people who could do something about this. It takes the identification of the problem for the problem to be solved. It takes a picture first to make a change. It takes a request before anything will evolve. It could be fun. It will definitely be cathartic. And who knows what could come of it. You just never know unless you try.

And if anyone has any thoughts about design issues or annoyances or problems they've experienced in with the pump, I'd love to hear them. I'm interested in aesthetic issues, user issues (like readability or tube snagging or function navigation etc.), as well as integration issues (like how easy or difficult it is to wear with clothes, like dresses for instances, or the clip, it's size, the hardness of it etc.). Since I'm only one person I have only one experience. Any other insights you might have would be great. Plus how cool would it be to turn the silent endurance of these issues into a healthy and positive conversation. A conversation that could, very possibly, bring about a change!

Thanks for the image from skiingutah.

one too many.

My pump site was itchy last night and into this morning. Annoying and noticably itchy. The itchiness, coming and going, but mostly staying. They say you can keep the sets in for 3 days, and goodness knows I keep them in for the full 3 days and then some, if at all possible. Every time I have to change my site, I have a brief flash of resentment. A moment of feeling sorry for myself. But then I get to it. And in the blink of an eye it's done. But I digress.

So this morning, I knew I needed to change my site even though it hadn't been in the full 3 days. I changed it, and though I didn't have a full blown infection, I was pretty close. It felt awful. Itchy, soar, irritated. Boy did it feel good to get the set out. And all day, I kept checking it. Making sure it was ok. All day, I felt better and yet also a bit sad. Sad that I have to deal with this kind of thing. Sick of my skin feeling mildly irritated, by either the site or the adhesive or my jeans rubbing against it. I put the sets in different places and each has it's upside and downside. My old standby is my backside and hips. Overall, it's been the best place, but as I've said before, it's getting a bit tired and is in need of a break. I do use my legs, though the tubing often get tangled or tugged when I'm getting dressed. Occassionally I use my belly, but it's only good for 2 days because I'm lean and the candula tweeks my abdominal muscles. I haven't tried arms yet which I guess I should, but with all the shoulder recovery, I have no fat there to speak of. Round and round I go.

In the end, it's just a small thing. A small thing that sometimes feels so big. One of many small things that makes up life with diabetes. Unto itself, not such a big deal. Like a paper cut. Small but irritating. Small but such a pain. As with most stuff around diabetes, it's never just one thing. It's all the small things that add up to how it felt today. That this one small thing, was simply one too many.

Thanks for the pic from beth.

strength training.

I'm going to start working with a trainer, to add some core strength to my exercise program. Because all I do, since my shoulder saga began a couple of years ago (yes, it's been years...), is walk every day, 1-2 miles a day. Anything much else and my shoulder gets cranky and sore and wakes me up at night. Plus I've been dealing with other medical stuff so I've become a little nervous about doing anything more than the walking. And of course, underlying all of the above is diabetes, my happy friend that never goes away.

So I decided that it is time for some help from a professional. A personal trainer, who I just met a couple of days ago. She asked me about my goals and I said something about more strength and flexibility, about becoming more well rounded in my fitness. The usual stuff. And then I had a moment of clarity and realized that though these were definite goals, my biggest goal was actually about becoming less afraid. Less afraid of injury, less afraid of doing too much, less afraid in general. After 20 years of managing diabetes, I've become so careful and aware of pace, that I'm beginning to feel a little too tentative about my physical activity. It's a known fact that exercise adds another variable to diabetes control. There's lots to consider like frequency, intensity, consistency, food, hydration, pace. And then there is the inevitable affect it has on blood sugars, in the immediate moment and, as in my case, often many hours later. That coupled with the slow recovery from multiple shoulder issues and recovery from recent surgery, it's understandable why I might be a bit reticent to dive in unattended. But as it stands now, I'm also reticent to remain reticent about diving in at all. And that's the rub. And the challenge. And the goal. Less afraid, more strong. At the right pace, given all my particular needs. Train to be strong physically as well as training emotionally to become a bit stronger about trying new stuff. So I'm looking forward to working with someone who is a professional at this process. So I can feel less afraid and get on with the strength part of the equation. We'll see how it goes.

200 calories.

As most of you know, I like pictures. They tell a lot. Often more than words, in my mind. You know, they're universal, straightforward, understandable. So imagine my delight when I found this great site that shows in picture form, what 200 calories looks like in a variety of foods. I guess I kind of get it after my fun-filled carb counting sessions with my nutritionist and the rubber food, but still, I think it's groovy to see it this way. Or rather, to be reminded, this way. I know it's not pictures of carb portions, but I still find it useful. Or maybe it's just to me, being kind of a picture geek.

fashionably whole.

I've blathered on about the challenges of being a woman, wearing a pump and trying to be and feel stylish. Others have too. With all due respect to the pump engineers, it feels like they assume that everyone wears waistbands ALL THE TIME, regardless of gender, so a nice plastic clip is all you'll ever need. I've whined about the pathetic option we women have been given, of strapping the pump to our legs like we're some kind of modern day pirate, if we have the gaul to want to wear a dress once in a while. It's not the end of the world by any means but still, it's kind of demoralizing when the rest of the female world just gets to go with the fashion flow, while we're left the worry about how to deal with the lumpy, life giving brick attached to our bodies.

Case in point: I personally love the diane von furstenburg wrap dress. It's been around forever and given half the chance, I'd buy about a thousand of them to wear as a part of my perfect uniform. They're sassy, grown-up, comfortable and very flattering. But please, barring the velcro pirate trick, it's not going to work with my friend the pump. Somehow I can't imagine the body hugging silhouette working with you know what attached, well, anywhere. Sigh. I guess I have to pass on this particular fashion moment.

But sometimes, on the other hand, the fashion stars do align and there are some sweet choices that can work for a diabetic gal such as myself. Take for instance, the rise of the empire waisted silhouette. Fabulous! I've always loved the look and now, thanks to the shifting winds of fashion, there are a myriad of fantastic options to choose from. Pretty dresses, luxurious sweaters, flattering blouses. They are comfortable, very sassy at the moment and guess what, thanks to the design of the garment, no pump is ever going to show it's clunky little face when I'm wearing it. I splurged and got myself an amazing cashmere, empire waist sweater this fall and I love it. I feel groovy and I love the fact that my pump isn't hanging out there like it usually does when I wear my basic jeans, sweater, tee uniform. I'm convinced. I'm looking for more. Because they work. Because I feel less outside of the fun of fashion when I wear it. Because, in the end, I feel better, feeling pretty and sassy and hipper once in a while.

I feel more whole today with my diabetes than I've ever felt before. Whole and normal. But still, that doesn't mean that sometimes I could feel just a little more so, thanks to a groovy, cashmere sweater.

trying to not add fuel to the fire.

My bloodsugars have been a little elevated overall, since I returned from the hospital. I think mostly because I'm not moving at my usual speed yet. I just correct as needed, since it doesn't seem to be consistantly high at any one particular time. Plus it's been Christmas, you know, "have a cookie, chocolate, piece of pie...insert sugary delight here" at every turn. I haven't overdone, but given the "lack of exercise/recovery element" afor mentioned, my bloodsugars are unsurprisingly running a bit high.

But I have my pump, so I adjust. I used to worry about irreparable damage being done everytime I was high. Years of worrying. And then I asked my doctor about it once and he said that if I'm getting it down quickly and consistently, there isn't much to worry about. My A1C's bear him out so I worry less about this particular issue now. The goal is to note the high, correct the high and avoid the recriminations. They don't help the situation at hand and sometimes, quite frankly, they actually hurt it. Anger, frustration and annoyance seem to adversly effect my bloodsugars. So why add fuel to the fire. I admit I'm not perfect at the total "no worry" strategy, but I'm getting better at dealing with the highs without the uneccesary extra emotion. A few more bloodtests and lot's less worry, seems like a fair trade off to me. Beats the alternative, in my mind.

thanks to kitty.

My great friend gave me this perfect birthday gift. In the first place, we call each other kitty for some unknown (and totally entertaining) reason. Secondly, I love hello kitty. And lastly, my friend "kitty" has been one of my most supportive friends in terms of my journey with diabetes. So this thoughtful gift was the perfect storm of all of those things, and more.

Being seen with diabetes has always felt like an interesting balance act for me. How much to share, how much to keep to myself. I don't want to be seen as the sick girl, yet of course, I face challenges others do not. This has posed some awkwardness in my life in the non-diabetic world because I'm not always the most graceful at finding the right balance. And also others who don't have diabetes can be clumsy without meaning to. So, as I've said a thousand times, blogging, the OC, finding a voice here, has all made such a difference in feeling more visible, and in turn helped enormously with that balancing act I face in the "real" world.

So it's because I'm feeling more seen here, that I am so touched by kitty's gift. Having a non-diabetic (albeit a highly considerate and attentive one) give me this gift represents such a new day for me. My diabetes is seen by my friend, understood, made personal, funny and sweet, all in the light of day. A girl's got to have a bag to carry her diabetes junk in, so it might as well be a brown and bright pink, hello kitty one, all things being equal. My sweet friend hit the perfect note with this gift, and in the process, helped me to see that I'm not as invisible as I used to be.

And for that I will always be grateful to kitty, because after all, that was the biggest gift of all.

being prepared.

Thank goodness I was a girl scout.

I'm traveling for business tomorrow. The first time in a while. The first time since the new regulations about traveling with liquids and gels. It's time for me to dust off the perfect diabetes travel kit. I have a new letter from my doctor explaining all the junk, including liquids and gels, that I have to carry with me. So ostensibly, I'm set. And yet I'm sitting here, the day before, wondering what kind of security adventure awaits me. It's a habit I come by honorably from past experience. How early should I get there, I wonder? It could be a seamless process after all, with no one batting an eye when I mention my insulin pump, as I step through the security machine. Or it could be the blank stare, pulled to the side with lot's of questions kind of thing, like it was early after 9/11. Who knows. I'll just have to wait and see. And in the meantime, plan for all the possibilities. Be there earlier vs. later. Have the letter easily available. Be ready to pull out all my pump stuff and insulin. In a word, I will be prepared.

What's so classic in all this, is the fact that I'm even thinking about at all. On top of making sure that I have all the stuff I need to bring with me, all the back-up, contingency equipment and meds, I'm also having to think about security. I understand the why of it all. I get the realities of modern travel. What I'm struck with though is how, as usual, "regular life" is just a bit more complex, because of diabetes.

Yep, thank goodness, I was a girl scout a million year ago. Who knew that the be prepared motto we girl scouts live by, would be so useful later in life?

grumpy about new sites.

I have to move my insertion sites and I'm not very happy about it. I've been using the same general area for a long time. Moving them from one side to the other. But I know that it is time to find some fresh sites so I can give this area a rest. My stomach might be an option though the few times I've tried it there, it's been uncomfortable. Maybe I need to get one of the catheters that inserts at an angle. Before, when I've tried it in my stomach with the straight catheter, I've felt the tip of it against my muscle wall and that's felt pretty icky. Or maybe it's smart to start with the legs next. I've never done it there before. I wonder what that will feel like? Can't wait to find out, not.

Suffice it to say that I am feeling momentarily resentful about having to figure out a new place for my sites. I resent the inevitable figuring out of the clothes, the mechanics of the tubing, the unknown reality of everyday movement with new sites. I don't want to have to learn new tricks. I admit it. I don't want to have to be aware, take mental notes, adjust something that has worked just fine for years. It's like starting back at square 1 and I hate that feeling. I hate feeling clumsy and out of control with the mechanics of my diabetes, even if it's only temporarily. "Out of control" bloodsugars are one thing. "Out of control", learning curve mode, well that's another. And it's not my favorite place to be. But I have to go there. It's time. Deep breath. Here I go.

being seen as dimensional.

Ok, so I'm in a better mood today. Yes, diabetes layers over everything. But most days that's managable. I realized that when I get the most blue, the most freaked out, is when there are too many health issues to deal with at the same time, too much choice, to much interconnectedness, too much to navigate. Do I go with traditional medical protocol for my shoulder or do I do acupuncture, yoga, pilates? How is my diabetes impacting other random health issues? Traditional medicine works for diabetes. But it hasn't worked great for the shoulders. Hm. And what happens when the non-traditional practitioner debunks the traditional methodology? Naturpathic vs. dietician? Synthetic meds vs. natural herbs? Help, I'm swimming as fast as I can. I can choose, but what if I choose wrong? It all feels so big and confusing and daunting sometimes.

But I discovered something yesterday, that I think is really going to help. I live in a city with a big teaching hospital, where I go to see my endocrinologist, gynecologist and any other random specialist I might need. Well, at my hospital they now have a new service offered through the women's clinic where, for a relatively small, non-insurance covered fee, I can work with an internist who will serve as a holistic caregiver as well as a knowledgable navigator and medical partner. They are available 24-7 to answer my questions and also help me navigate the labrynth of different doctors and specialists. They see me as a diabetic AND a woman. And they take the time I need to assess all the medical issues I face as well as help me develop a reasonable and effective strategy in moving forward. It's not that they take the place of my beloved endocrinologist or my gynecoologist, but rather, that they have the TIME neither of the others have to TALK to me about all the intricate, complex details I face. And they really understand what I'm talking about. They don't just see me as a shoulder or a pancreas. In a word, they see me as dimensional. And they can help with all the other wonderful people and information I have to intersect with on my health journey, to remember that that it is so. I can't believe this is for real.

Oh my god, I feel so relieved. I saw this wonderful, young physician yesterday and she spent an hour and a half with me, reviewing my full medical history. We talked about my concerns as a person with diabetes, who when dealing with other medical issues and specialists, I'm only seen through their specialty filter and not holistically. We talked about the fact that diabetes is always a layer. We talked about how complex it can all get. We talked about how tiring the process of dealing with all the details can be.

But now I have a knowledable advocate, navigator and partner. Now I feel less alone in the process, and as such, I feel less burdened. Less burdened. That alone is worth the price of admission, as far as I'm concerned. Add to that, the fact that the clinic also has an acupuncturist, naturopath and physical therapist on staff in addition to the traditional physicians, and well, I feel like I'm in medical nirvana. No more wondering if the two approachs will agree. No more worrying that one approach will be contraindicated by the other. These folks talk because they work together and respect each other. I just show up and we figure out what makes the most sense for my care. One stop shop. Talk about customer service! This is truly the first time I feel like I'm being seen for what I am as a patient. Dimensional, complex, interconnected. And because of that, I feel safer, less burdened and more likely to get the care I should.

Happy girl am I!