aiming for grace

inspired by another industry.

When I first saw these images in the new york times article from this Sunday's paper, I thought they were sassed up wireless phones. At first glance, it made sense to me, given how ubiquitous cell phones are today. Of course someone would want to take them a step further to help make them more of a fashion accessory.

And then I read the article and discovered that this was a new hearing aid called delta, by the danish company, oticon. It is a medical device! A medical device that didn't look, well, medical. It looked like jewelry and was designed to integrate into the wearer's real life, rather than the other way around. What a concept.

"Cathleen Osborn, 45, who has dark brown hair, picked a pair of hearing aids with a leopard-skin design. “They go with my hair — and my personality,” she said, but added that the devices were usually not noticeable. “From the day I wore them, they just completely changed my world,” she said. “I can hear people talking in the back of the car. I can even hear whispers.”

Cutting edge, functional performance AND beautiful, sensitive design, that together add up to a device that completely changed a person's world. That's what great design can do. It can help us live better, safer lives with a chronic illness through amazing engineering and technology AND it can do it elegantly, in a way that doesn't shout illness. It's great to see another industry that gets that. It's great to know that it is possible. It's very inspiring!

how noisy is it today?

It's interesting how the volume of diabetes can dominate and recede.

Sometimes its noisy because the disease itself demands atttention. My control is wonky. My diligence is wavering. Whatever the reason, I must address myself to the requirements of the game. Tweak. Adjust. Regroup. Focus. It comes with the territory.

And then there are the times that diabetes feels noisy and it isn't because of anything particularly diabetic that's going on. It's the layering phenomenon I've mentioned before. Other stuff, physical or otherwise, PLUS diabetes, adding up to lots to manage and more to deal with. At those times, I just feel burdened and admittedly, a bit sorry for myself because of the PLUS factor. "I have to deal with X, and as usual, diabetes too." I think those times are the hardest for me because I have the burden of dealing with whatever is on my plate as well as the burden of feeling sad, angry or just plain tired. Heavy shoulders, heavy heart. Not so fun.

What's the most interesting (and wonderful) though, are the times when the noise of diabetes recedes. There are times when I don't notice it so much. There are times when everything is pretty much ok, and my shoulders and heart are light. There are even times when diabetes feels a bit like a virtue. A badge of honor. A source of pride. Because I do it everyday with focus and integrity and good intentions. Some days the results are better than others, but regardless, I also show diabetes respect. On those days when I do notice that it isn't so loud, diabetes is a layer in my life where I can see my strength and character, and as a result, give myself some credit for doing as well as I do. I like those times the best. The quiet times when I notice all that it takes to do this disease well and say, "yes, I do pretty well, all things considered."

It is interesting how the volume of diabetes can dominate and recede.

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!

always a layer.

I saw my great doctor today. More for talk than any specific diabetes related issue. Well actually talk about diabetes in general and how it layers over everything. And how that can compromise quality of life if it layers over other health or life challenges. My shoulder continues to nag at me, wake me up at night, ache. Is it the computer, diabetes, posture, exercise, lack of exercise? Should I do acupuncture, yoga, sit still, stop blogging, gut through the pain, ice, heat, massage it? When it flares up, is it related to low or high bloodsugars? Should I try the sensor to see what's going on at night? Am I compromising my quality of life by making so many accomodations to my diabetes? Less travel when I have the choice, a slower pace to make room for the inevitable bad days. Or should I just gut through, take it all on, regardless of the fatigue, the ups and downs, the blood sugar roller coaster that has to date, been the result of this approach? Am I making the right choices, I asked? Am I doing it well enough? Sigh. And well yes, there were a few tears too. Poor man. He was, as always, great. He let me vent and wring my hands. He helped me come to the decision to try the sensor. He's going to get me in to see a shoulder specialist who also really gets diabetes. He told me I was doing fine. He said it would be ok.

And I know that he's right. I know that I'm doing the best I can. I know that it's a lot of choice to manage and a lot of information to navigate. And I also know that there is never one right answer. Things change. Context morphs. Priorities shift. Everyday I make decisions about many things. And always, always, diabetes is a layer on top. Always, there is diabetes to consider. Always.

medical design can be fresh.

This is the dentist's office, KU64, in Berlin. Not exactly what comes to mind when I think of dentist, medicine, clinic, or doctor's office. And though this isn't my favorite design look per se, I do love the fact that someone is really thinking and designing medical places in a different way. Designed by the firm, graft, this place reminds me that there is energy around thoughtful design for the medical world out there. I want a cure, but in the meantime, I want the best medical experience I can possibly have while I'm waiting. And that includes aesthetic experience too.

hello there.

Ok, so I'm on a total accessory jag right now, so please bear with me. I recently wrote about the possibility of having a fabulous pump cover made from this place. I haven't followed up with them, but I will. Or will I? Look what I stumbled apon today! The people at bibi's are making high cute factor covers for iPods and Nanos and I ask myself, why not? Why couldn't my pump become some kind of anime character sitting on my belt? It feels like it's a rather demanding (though very helpful) character already. So is this the natural next step?

Or do I need an intervention?

Maybe I'll contact both of them, just to see if they are willing and able to sass up my old friend. Then I'd have some options depending on my mood, outfit or occasion. Wow. I could either be on to something big here or else I'm heading into the land of total fashion disaster. We shall see. Ha!

carrying it all.

Diabetics are a resourceful bunch. We figure out how to make all the stuff we have to do to be healthy diabetics, work within our busy lives. Like how to carry all our diabetes paraphenalia about. Kevin wrote a wonderful post about his love for his L.L. Bean rucksack and kindly called out my love for sassy bags in the process. Much thanks to him for the link as well as confirmation that I'm not the only one enamored with the little (and somewhat obscure) details of diabetes accessories.

And P.S., I've been thinking about getting a backpack and after reading Kevin's post, I'm becoming more convinced of the merits of this idea by the minute. If I do get one, I'm leaning towards this little beauty from EastPak, who's pattern is designed by one of my favorite print designers, Hanna Werning. Who says practical can't also be sassy, for those of who want that too?

house models.

I'm coming late to the House party, having just started to watch it this season. And I really like the show. It's smart, wonderfully written, a bit irreverent and basically a mystery, which I personally love as a story genre. What I'm also really appreciating, is watching the main character, House, struggle with the return of a disability that was supposed to have been cured by a surgery. It's not the pain or struggle I appreciate per se, but rather, that it is being played out on mainstream media for all to see. Visibility in media can mean a number of things. Acceptance, confirmation, inclusion. For those of us consuming media in the 70's, we remember that this was one of the key arguments raised when talking about race on television. Invisibility on TV meant African Americans were never seen beyond the accepted stereotypes and racist generalizations of the culture at large. Diverse characters, illustrating life beyond the stereotypes, allowed the viewer to see people as individuals, rather than as the one dimensional idea of who they were as a group.

And that's why I really like House the most. Last night, when he finally resorts to picking up his cane again, I literally hurt inside. They skillfully handled the internal struggle he was having between his deep hope that things had changed positively forever and the sinking understanding that in fact, they had not. I kept thinking as I watched the show, that some writer really got the subtlety of the internal dance that goes on between mind and body when the body is compromised. Though the character isn't a diabetic, the story felt universal to anyone dealing with that dance. Overall, it felt like a step forward to me. A hit show, who's main character's body is compromised, causing him struggle, frustration, pain despair and anger. He's not the nicest guy on TV, but maybe this insight into his physical struggle helps give some dimension as to why this might be so.

House is also a hit show that helps "normalize" the experience of physical challenges for the viewing audience to see and internalize on some level. And all this while he solves confounding medical mysteries that stump everyone else. Compromised body doesn't mean "less than" performance or skill. According to House, it means humanity and depth, which makes this show one of my new favorites to watch. That, plus the fact that I'd be happy to watch Hugh Laurie in almost anything.

good design = feeling better.

Thanks to my friend Alex for this interesting link that speaks to the connection between good design and healing at hospitals. I may be a bit of a loudmouth about it, but at least this confirms I'm not alone in having a strong opinion about how much good design is missing in the medical world.

2 more friends.

It's been a strange summer. I've gone 20 years without knowing anyone close to me who has diabetes. Yes, I've met people who have it but we've never become close friends. It just hasn't worked out that way. Before blogging I felt very lonely with this disease, a lot of the time. In my world, I was the only one who had it and so I was the only one going through what I had to go through as a diabetic. I often felt like I had my nose pressed to a window, me on the outside, watching a very fun party going on inside. I was just different from everyone else, because I had diabetes.

And then I started to blog and my world literally opened up. I found that there were others that dealt with the strangeness of life with this disease. They knew about the rituals, the rules, the disappointments, the struggles. And they had humor and courage and empathy and insight about diabetes. I felt understood and seen. I felt normal amongst these amazing people. I felt less lonely.

Which brings me to this summer. I've had two very close friends diagnosed with type 1 diabetes in the last 2 months. Both are intelligent, bright and positive. Both will do fine. I've tried to be there to support them, to get them connected with the right medical team, to help them navigate the first days and weeks and months after the inevitable avalanche of information that comes with diagnosis. It's been wonderful to help and I feel honored that they have let me. It's also been strange to see how much I know about living with diabetes, from the vantage point of someone who doesn't know a lot yet. And I have to admit, it's been sad for me too. Sad to see them from where I sit and know what lies ahead for these people I care so much about. They are still in the beginning stages of mastering all the mechanics and at this point, are feeling better because they have insulin on board for the first time in ages. They just feel better. And I know that bodes well for them in the coming months and years.

But that's just it. The fact that there are coming months and years of unrelenting diabetes management noise (as Kerri so eloquently framed up recently) ahead of them, just breaks my heart. Hopefully there will be a cure in the near future. Certainly the management technology will get better. But I'm so used to having diabetes that I just assume it's not going away tomorrow. When I was diagnosed I was told that it was a good time to get diabetes and in the next 5 years there would be amazing breakthroughs. And I heard the very same thing said to my 2 friends in the last couple of months. Well it's 20 years later and though the technology is better, in the end, I still have diabetes. My god, I hope that what they were told recently, will turn out to be more true for them than it was for me.

So after this summer, I do feel less lonely, thanks to the OC and now my two friends having diabetes. Less lonely, but not necessarily happy about it. The diabetes party is one I wish nobody had to attend. Though the people are amazing here, the cost of entry is pretty damn high!