aiming for grace

writing when I can.

There is an irony I find in writing a blog about diabetes. I realize that I spend so much time dealing with diabetes in my day, every flipping day, that sometimes I don't have the energy to choose to do one more thing around the subject of diabetes. I realize that there is a deep, fundamental push and pull in my life with this disease. Me testing how far I can get away from the reality of it's presence in my life. Tethered forever, but always trying, tip-toeing as far away as I can get before it tugs me back. I've even been trying to visualize that idea, though it's not finished or really even formulated yet. What does this feeling look like if it were a picture? That question and the act of making the idea "real" through art, helps me to see and better understand what I am doing. Which helps me to understand the lean of my life. Which is always away. From the blood tests and low or high bloodsugars and set changes and unending planning and the diabetes subtitle dialogue running just below my life.

So sometimes, I can't get up to write about diabetes too. I can write about art and design and my dogs every day at dear ada. Every single day for the last 2 years, barring breaks for surgery and travel. That process is purely celebratory and joyful. And though this blog is that too, it is also always in relation to a deep and sometimes buried, heart felt sadness and lean away from diabetes in my life. The joy comes from the connections and shared experiences. The celebrations are the milestones and victories. There is humor and even a new, coping philosophy to be found in the process of writing about diabetes. And then of course, there is the unending comfort the blog provides in knowing that I am not alone in life with this disease. Others know of "what I speak", and amazingly they reliably know what to say when it's most needed. My husband says that people who don't have diabetes can sympathize but never truly empathize because they don't share the same references and experiences. But the OC does. They empathize and comfort and always get it. I was struck by a comment from Scott the other day, where he was acknowledging the struggles of our disease. Not my disease, but our disease. That one word made all the difference in reminding me yet again, that I was not alone.

So I guess this post is simply a clarification as to why I don't write more than I do. It's all that I can muster. It's so good and satisfying to do it when I feel like it, but it's also one of the few places I can say no to diabetes. Yes today, no tomorrow and the next. That's good you know. To have a place where you can actually say that and have it stick. I guess that's another good thing about having this blog which is ironic really. It's good to write a blog I get to not write at times.

team pizza.

I had an appointment with the nutritionist at my diabetes clinic recently. It was so great. I always learn something new about food and how to deal with all it's implications to my diabetes. I also learn stuff about myself in the process of learning about food and my diabetes. Like the fact that over time, and in the effort to keep my life and diabetes regimen simple, I gradually narrow the choices I think I have. A few bad experiences with pizza for example, and over time pizza comes off my list of foods I want to eat. Which on one hand makes logical sense. There is no sense in continually going back for more of the same bad result. What's interesting to me though is how I decide that no pizza is the way to do that. After all, I wear the pump and it has the ability to do dual wave bolus', a feature designed for foods like pizza. That's another way of dealing with the pizza issue, but it hasn't been one I've even wanted to try, because it's yet another thing to have to try and experiment with and master. Another thing, on it's face, means more work, more highs and lows in the process, in a word, no fun. So my decision tree shuts off that option too and I'm back to no pizza for birdie. And so it's been years since I've had pizza for a meal. I've nibbled here and tasted there, but no crispy, thin crusted, cheesy delights as the main course for me. No, no, no.

Well, what was great about this visit to the nutritionist, was we talked about the process I go through to get to the pizza no. The reason's behind saying no, without judgement or recrimination. My wonderful nurse empathized deeply with me as a person navigating diabetes. Her empathy allowed me to see the choices I was making in a clear and supportive light. My husband was also there which helped further, because he's always trying to make my life better with diabetes. A professional and a loving partner, team members in my journey with diabetes. How amazing is that? What was great was we looked at the pizza story as a team, and we problem solved together. My nutritionist explained the biomechanics of how fat effects absorbtion. Check, on the science. Now the project. We came up with this idea that over the next few weeks, we'd just solve the pizza dilemma. Not all food dilemma's. Not dual wave bolus' and square bolus'. Nope we'd just solve pizza. We came up with a plan. I'd first eat a slice of pizza, test every hour after the meal for the next few hours. I'd just collect the data. Then I'd meet with my team to assess the data. We'd then walk through the dual wave process together. Then I'd try that with another pizza slice. Report back. It became a kind of a fun project. A team project. A small and managable diabetes project. With the end result being that I'd get to have a little bit of pizza back in my life. Fun. Not work. What fun.

Ok, so I know this sounds kind of remedial to all the folks out there that are wizards at their pump. It also may sound kind of lame that I've limited myself so much. I know that this isn't rocket science and I even know I'm smart enough to figure this out without the need of advice from a nutritionist or my husband. I know that I'm the one that's limited myself and that in the end, I'm the one that's going to need to do some work here. But frankly, that's not the point. The point is that I get filled up with diabetes management and technology interface and data collection. I'm not by nature a scientist or an engineer. My heart doesn't race with excitement when I think about yet another experiment where my body is the test animal. My personality, my tenure as a diabetic, my preferences don't predispose me to experimentation in this zone. So at the end of the day, I need some help in moving beyond my predisposition, and that's where my crack team comes in. By doing this simple small thing with them, I get beyond my habit, my decision tree, my belief of no pizza for me and end up with a reservation at ken's artisan pizza. Me, my team, my dual wave bolus and hopefully, the thinnest, crispiest, cheesiest pizza they make as my main course. It's a small thing but I think it's actually a big thing, because in the end, a little more pizza in my life would be nice. So now I'm pretty excited about this small adventure where before I was leary. It will be fun, not to mention the fact that my husband wants to have birdie's team pizza tee's made for the project. A great team, pizza and silly teeshirts. Boy am I the luckiest girl ever!

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!

more exercise adventure.

Exercise. I love how I feel after it. I don't love what it does to my blood sugars. I'm trying to do this trainer thing. As well as pace myself in the process. But oh the rollercoaster joy on the day of my workout. Yesterday I tested before. 110. Good, but also a near guarentee that I'll go low during the workout. So I brought a granola bar to eat during, which I did. We kept the pace reasonable, or so I thought but yes, even with the luna bar during, I went low after. An icky low, so I suspended and ate some fruity snacks. By dinner, really high. Hello rebound. Corrected. Bedtime, 75. A snack. And surprisingly, an uninterrupted night. But still, what a day. Hm. Exercise. I love how I feel afterward, but I certainly haven't got it figured out yet. I'm trying to stay strong and resist exasperation which leads to abandonment of the idea. Strong in body. Strong in resolve. For now, let the experiment continue...

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.

balancing on and off.

I've been feeling surprisingly good since my surgery (so much better than the shoulder hell) but still, I think I've overdone a bit. I feel really tired today so I'm doing nothing. A blog here and there, some mags, napping, more Grey's Anatomy. That's about it. I don't understand my drive to always want to do, especially when I'm sick or recovering from something like surgery. I've always had it, ever since I was a kid when a sick day meant falling behind or missing the action. I always hated that. And since I got diabetes, that personality trait has overlaid with my desire to not have the disease limit my life. So I rarely take a sick day or let diabetes be the reason for not performing at the highest level I can. I don't want to slow down, even when I'm tired or recovering or sick. Kind of silly really, but understandable too.

But I'm getting better at taking time outs and balancing lately. Recognizing when I need to. I'm learning that everyone needs to take a break. It's like I've expected more from myself than I do from others, because I have diabetes. But I'm realizing that it doesn't make sense. Time out is good, even when I'm not dealing with something medical or physical. It's better in the long run. I took my sabbatical this year and it was wonderful. I'm stopping today, where as before, I might have kept pushing. That's progress and I want next year to be about balancing on and off. It's a goal. A new year's resolution. More balance. Time off when it makes sense. Time out to listen. Time for time. To think and breath and restore.

Sounds like just what the doctor ordered (as well as Ruppert too)!

off to the races.

I'm off to the hospital tomorrow. So I'll be away for a bit. A week or hopefully less. Have great holidays in the meantime. Be well. And thanks to everyone for such a great year full of connection, support, humor, courage, visibility and sharing. I am so grateful.

keeping it together.

This is a chicken or egg kind of thing question.

I know that I have pretty "controlling" personality. I dot every "i" and cross every "t" when it comes to something I'm working on. I care about the details. And I've done well by that quality in most parts of my life. And then there is diabetes, where we are told that "good control" is the goal of all that we do. There's that word again. Control. So that's how I approach my diabetes, and I've done pretty well by that quality again. It's most certainly not always perfect, but I maintain good A1C's, live a productive life, minimize diabetes' impact as much as I can.

And then there are all the other things about life that happen. On top of diabetes. On top of your job. Other health issues that pose there own challenges. Family stuff. Life stuff. You can't control everything, nor do I want to. But I realized last week, how much effort I make, to keep it all going. And when there is another health thing to contend with, more of my energy has to go to just managing. I go inside. To figure out the next steps. To calm my understandable nervousness. To tease out the information that I need to understand and consequently make a knowledgable decision. Luckily, nothing is life threatening. Luckily, it doesn't all have to be decided today. Medical people have to be talked with. Information has to be gathered. Details have to be explained. And that takes time.

People on the outside don't know what I'm going through on the inside. And I don't want to always have to lead with my health issues, for them to understand. Especially at work. But I realize that when I'm dealing with more things on top of all that I deal with everyday with diabetes, it's easy for me to appear distant. Or distracted. Or short. Or controlling. I realized this week, that sometimes more than others, I'm working really hard at controlling what I can, so that I can keep it all together and moving forward. Health stuff is so challenging sometimes. And with diabetes as a constant layer, the "event" related health stuff can appear a lot simpler than it actually is. Other people see it and say, oh bummer, but you'll get better. And they're right. To a point. They see the one thing and forget about the diabetes because I "do it well" so it recedes from view.

Which is fine. It just means that sometimes I feel like I'm running so hard to just navigate my health. I think I need to learn how to carve time out for myself at these times. To process and focus and protect myself. Time to rally. Time to take a deep breath. Time to get ready and go. Again.

So back to the chicken or the egg question. Am I a controlling person or do I have to be controlling to manage all the stuff on my plate? Who knows. If people say I'm a controlling person, I guess I can't really control that. I have to know that I'm doing the best I can. I have to know it and let it help me. Especially at times like these.

owning my choices.

Last night I was up with a high bloodsugar. The night before, a low. I spent this morning feeling really sorry for myself because I was tired and I resented the fact that I have to deal with diabetes so much at night.

But then something occured to me. I do know why I had a high last night. I'd probably eaten too much fat at dinner. The low the night before, I probably hadn't eaten enough protein. Yes, it is a drag that I have to deal with the fact that what I eat impacts my diabetes so much. But beyond that, I do have some choice and knowledge as to how to minimize the likelihood of this kind of nightime fun. I'm amazed, that after so long, I still try what I know won't work. I do understand why I do it. I just don't know why I'm surprised by the outcome since I'm the one making the choice.

So tonight, it's back to the known food routine. The tried and true favorites that help me to get the results I'm shooting for. They may not assure the desired outcome I'd like, but they'll certainly up the odds. Especially in the immediate future.

And then in the long term, it might also be good to think about attempting the square bolus trick again. It didn't work well for me in the past but now with the sensor, it might be easier to sync up, if I go in with real data about how my bloodsugars are reacting to specific foods. Ok, so I'm a little slow on the technology uptake. But yeah, I see the logic.

Regardless of what I do specifically, I know I do have choices. Even choosing not to do something is a choice. It means I need to weigh all the information, the trade-offs, the energy it takes and then decide. Decide to eat more protein at dinner, or try the sensor, or the square bolus. Or decide to not decide. For today at least. Because I'm tired, and that's ok too. Whatever the choice and result, I'm taking responsibility for the parts I can control, which makes me feel like I'm less of a victim. And that always feels better to me, in the long run.

no or...

I think I might be a bit of a techno-phobe. That's to not say that I'm not also a big fan of technology because I really am. Frankly, I love (some) technology a lot. My computer is usually my friend. My pump has made my life significantly better. I love the internet, blogging and email. TiVo is fabulous in my book. I'm lukewarm about the cellphone but I can't live without it either, so I guess it goes in the technology thumbs up category, regardless. And yet still, I really am somewhat wary of new technology overall. Man, do I resist trying it beforehand. Partly because I'm sick of the learning curve most new technologies require, and partly because I'm convinced the new gadget won't work that well because it's the first iteration of said new technology and partly because I'm just plain nervous about having yet another new gadget to manage in my life, I think it's fair to say that I'm certainly not an "early adopter" when it comes to technological advances.

Which is fine when we're talking about entertainment or communicating with friends in a faster way. Some of the "old stuff" (translation, I've had it less than a year) works just fine even though it's not the "best". But what about when it comes to new technology that could ostensively improve my diabetes management? What about the stuff that might improve my quality of life as a diabetic, if I make the leap to the next iteration of what I already have? Or don't have yet. How do I know what the right balance is, between advancement and personal capacity to keep up with it all. Or put another way, how do I know when it's the right time to jump to the next thing?

I guess, as in most cases where choice is involved, it's kind of a personal thing. It's up to me to determine when it's the right time, by doing the homework, weighing the pros and cons and then deciding. Which makes total sense, logically. But what does logic have to do with such an unquantifiable thing as "quality of life"? How do I know if I'm making the "right choice" in a timely manner? It took me forever to decide to go on the pump, and when I finally did, my life just opened up for me. Am I wasting precious time, compromising my "quality of life", by dithering as to whether I should do it or not? All good questions. Unfortunately, no pat answer.

Yet, the more I think about it, the more it seems that maybe, in the case of diabetes and technological advances, it's just going to take some time to decide. Because often the new stuff we are talking about requires us to wear it in/on our bodies. The more adventurous and the early adopters among us will leap first, blazing the trail for others to follow. Somewhere along that trail, I'll take the leap, grateful for those who have gone before me, and once there, will sing the new technologies praises from the highest hilltop (and probably gripe a bit about the design of them too, ha!). Slow or fast, I guess with technology and diabetes, as with most things in life, it's still a personal timeline and pace we have to follow. That fact, plus the knowledge that in the end, that there is no one, perfect, right choice or pace for everyone, I'm going to try to take a deep breath, sit back and consider what feels right for me.