Monthly Archives: January 2014

Living well is the best revenge.

So it’s Friday. End of January. Whenever the calendar comes around to the 30th and 31st, my mind starts going back to 1991.

On January 30th, I saw a new doctor (still my Mom’s doctor) for the first time. We went through a physical exam and I gave some blood and a urine sample. Later that afternoon, the office called to ask me if I could come back to see the doctor first thing the next day, January 31st. That’s when I received the news that I would be living with Type 1 Diabetes for the rest of my life. I was 28 years old.

There’s a lot more to that story, and my mind goes back to every detail when these two days come around again. When I mentioned this 23 year diaversary to Maureen she was like, “Oooh… should we get a cake and celebrate?”. I said no. I feel like it’s important for me to celebrate the fact that I’ve made it this far. It’s not quite so important that I devour something as a memento. Though a little peach pie would be nice. A little peach pie is always nice. But I digress.

After work I’ll head home via the liquor store, and I’ll enjoy some pizza and salad with my brother-in-law, who’s in town on his way to New York, where he’ll start soon at the Bronx Zoo. Our next door neighbor will join us, and probably a couple of others too. I’ll take a moment to check my BG and work out the special dual-wave bolus (known by me as the Karen pizza bolus). Come to think of it, a martini would be okay too.

And that’s the best thing about surviving 23 years with this bastard of a condition known as diabetes. I have to do what I have to do, but in the final analysis, if I’m still living a good life with great friends and greater family? That’s something to celebrate!

No doubt parents of kids with diabetes want a cure. No doubt all of us want a cure. But in the absence of that, I think D-parents, and all of us, just want to know that a good life is possible even with diabetes on board. You know what? It took me a lot of long years with bad numbers and rebelling against the daily grind of this disease, but I am living a good life. I’m not going to blow smoke and tell you that it’s a walk in the park. But whoever said “living well is the best revenge” really knew what they were talking about.
 
 
 

Like these links.

Today I have a couple of time-sensitive items, and a couple of links that I hope will be helpful and informative. They were for me, anyway. Holy #diabetes Batman— To the #DOC:

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– Don’t forget that Monday is Diabetes Art Day. Founded by Lee Ann Thill in 2010, Diabetes Art Day is designed to help people affected by diabetes connect through creativity. So get out the construction paper, the paint, the pen, or the camera and come up with the idea of what diabetes is saying to you. Then post it on the D-Art Day website, but don’t forget to send it up to Facebook and Twitter too (hashtag: #DArtDay). All the information on how to participate is available at diabetesartday.com
 
 
– Sara Nicastro at Moments of Wonderful is participating in a webinar next Wednesday (February 5th) hosted by the American Diabetes Association and the College Diabetes Network. CDN is working on improving and empowering college students with diabetes. A quick count on their website reveals they already have 72 chapters operating at schools all over. You or a loved one who’s living with diabetes and who hopes to go to college soon might find this a very useful part of your week. Since Sara posted about it originally, I won’t link to the webinar registration directly. Instead, go to her post about the webinar to get the details.
 
 
– There are a couple of diabetes bloggers who have been researching a pump change (and making a change already in one case). I’m linking to their stories here because I think the descriptions of both exercises in due diligence are informative, and great reference material for the next time you’re making an insulin pump decision.
Read about Jen’s demos and reviews here.
Read about Kim’s demos and reviews here.
 
 
– What does diabetes take away from us in time over the years? Rhonda at FifteenWaitFifteen has a pretty good explanation of it when she talks about Charging Diabetes by the Hour.
 
 
– Finally… because my sense of fairness can’t let this post contain only links to blogs written by women… Here’s a fine post from Scott at Rolling in the D, who describes how different and yet similar we all are.

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Enjoy the rest of your week… I’m already googling “at-home art projects”.
 
 
 

You comment, I listen.

Back on January 6 (it seems so long ago), I wrote a piece in which, among other things, I lamented the fact that I have to waste time going from my truck back into the house when I forget my meter. In fact, I do the opposite a lot too. Anyway, that post sparked this banter between myself and a reader:

Comment

Yes, I was sufficiently shamed. I took to the internet a short time later and ordered up these:

DSC01318

So, for the record, I now own four Accu-Chek Nano® meters: One for the downstairs (it has its own place in the kitchen), one next to my bed upstairs, one for my truck, and one for my desk at work. Granted, with the cold temperatures we’ve been experiencing here in the Land of Pleasant Living, I’ll have to perform sort of a mouth-to-meter resuscitation in the truck to get it to work right now. But the weather will soon turn again, and before we know it, we’ll be back into the balmy upper 30s (single digits Celsius). Given the cost, it was ridiculous for me to not get an extra meter or two. As we all know, the meters are cheap. The test strips, the things most of us use the most, are probably our single largest expense next to the cost of an insulin pump or CGM.

Why the Nano® again? I know I could go out and get a OneTouch® Verio™ IQ, or an iBGStar®(though I don’t have an iPhone), but the fact is: I’m comfortable with the Nano®. The readings, to me, seem pretty accurate. And most of all, they’re consistent. If I see a 191 on my meter and I don’t believe it, I’ll put another strip in from a different lot right away and check again. Always, the next reading is within five points of the previous one. I guess that’s all I can ask for right now, although a light on that thing would be a very nice plus.

The other consideration, of course, is the fact that my strips are still covered by my prescription provider (ExpressScripts). Unfortunately, my 90 day cost for strips, which was $80.00 a year ago, is now $180.00. For the same thing. That’s $400.00 extra per year, if you’re counting, and it’s only about a $60.00 per 90 day discount over the lowest retail price most recently found on Amazon. You’re welcome, ExpressScripts executives. Enjoy your tropical vacation and your sportscar and whatever else your big friggin’ bonus brings you. At least I’m not paying full price. Yet. And I mean that in the most professional way possible.

Now I only have one more problem: I don’t drive to work most days. I take the local subway, which means unless I carry one around, I won’t have a meter in between the office and arriving back at the station near my home. As someone who had a terrible low on the train home one day a few years back, this is not acceptable. So… do I buy a fifth meter? Do I carry one of the ones I have already? I obviously don’t carry a purse, I don’t carry a “murse” (hate that word), or a backback, or a briefcase. I like to keep moving, so I don’t like carrying anything extra. I don’t know. This sounds like the whining of an already spoiled person. I’ll figure something out, but I will have a meter on the train with me.

Where was I? Oh yes… You comment, I listen. Sometimes it might not seem like it. But I try to put myself in the shoes of everyone who makes a comment here, positive or negative. The one above was a good suggestion that got me to make a good decision. Keep ’em coming.
 
 
 

Define Diabetes Advocacy. Additional thoughts.

Following up on Sunday’s rare post concerning advocacy and what it can look like sometimes, I offer you this. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.

I’m really glad that advocacy has been discussed a lot lately around the Diabetes Online Community. It seems to have brought about a wealth of ideas and interest from people who have either become weary with their advocacy up to now, or have been looking for a jump start in their outreach to others. For me, all this talk has been like a mirror being held up to my diabetes life, forcing me to examine what I’m doing and if it’s really enough. At my age (51), I’m totally okay with that, and whatever the answers to those questions may be, and what those answers may be inspiring me to do in the future.

But I also understand the reticence of others in our community who cringe every time the word advocacy is uttered. I’ve seen it in Twitter feeds where people express their disappointment that they could never be the kind of advocate that others are. I’ve seen it in blog posts where people describe being uncomfortable in a room full of superstars. I’m not a psychologist or anything, but I think that may have something to do with the fact that we’re always comparing ourselves to others. Here in America, we’ve kind of cornered the market on that kind of behavior, measuring ourselves against what we think is the ideal (fill in the blank).

I’ve been thinking about this a lot lately, and I don’t know that I can assuage any fears you may have about reaching out to others, or starting a new initiative, or conversing with someone who appears unapproachable. But if I may, and especially since I’m older than most of the people reading this, let me share a few thoughts I have on the subject of diabetes advocacy. I hope you’ll see this as a pep talk. In no way is this criticism. You’ll notice I use the word advocacy (or advocate) a lot—23 times, in fact. I’ve done that on purpose. I hope using the word so much helps take some of the stigma away for you. Here goes…

First: We’ve all been there. We’ve all felt unworthy at times, less worthy at other times. I haven’t taken a poll, but I’m pretty sure there’s not a D-Hero (or D-Shero) you can name who hasn’t also felt that way at some point in their advocacy. From experience, I can tell you that this feeling will pass. And it may come back… and go away again. It’s okay to let it go. It’s more than okay to make it comfortable for someone else to let it go. Letting go of that feeling is less like jumping off of a mountain, and more like walking inside from the cold. The warmth feels good. Embrace it.

Second: You deserve to be part of the conversation. And part of the solution. If there’s ever a time when you don’t feel that way, go back and read that again. There’s no time limit on it. You always deserve to be part of the conversation, and part of the solution. It comes as part of your admission to this club we all belong to. Knowing that requires also knowing that you have some responsibility (another scary word) to hold up your end of the discussion in a positive way. Negativity will only bring you back to where you started. But don’t worry. I think you can handle it. If you don’t think you can, go back and read this paragraph again.

Third: Maybe you’re worried about walking into a roomful of amazing thought leader D-celebrities, or just a roomful of PWDs in general. I understand, and I don’t want to invalidate your feelings, because they’re real. But… can we work on this please? I do a lot of hero/shero worship myself. Hero worship is good sometimes. But worship someone because you think they’re worthy, not because you feel like you’re not. The few amazing thought leader D-celebrities I’ve met would probably tell you two things from the outset: They’re not comfortable with hero worship anyway, and you are totally worthy. If you’re helping others, or trying to help others, you are fifteen kinds of worthy. You: Worthy. Believe it.

And another thing: I guarantee that when it comes to advocacy, there’s someone out there, who is just getting their feet wet, or is in the same frame of mind you’re in, who wants to be just like you. If you can, help that person. If there’s someone having difficulty with their advocacy, or if they seem to be stalled, embrace them and their efforts. That’s a form of advocacy in and of itself.

Fourth: How to start? Start by asking people about themselves. This is the single best piece of advice I’ve ever gotten from The Great Spousal Unit. Just do it. Send an e-mail or a tweet and ask someone about their lives, or about their advocacy, or about how they bolus for pizza. I’m biased on this because I see one-on-one relationships as one of my strengths. But it really works. Ideas hatch from questions and answers. Now, you might think that one-on-one isn’t exactly advocacy at the highest level. But have you thought about the exponential impact of the one-on-one experience? It’s like the shampoo commercial from the 70s: You talk to one person, who tells two people, who tells two more, and before you know it, BAM! Advocacy happens. And it all starts with a single question.

Fifth: Not knowing everything is okay. Ideas often start out as one thing, and morph into something else. Don’t not start something because you haven’t got it all figured out yet. Oh, and it’s true that sometimes, one idea begets another idea which sometimes begets the mother of all ideas. If your idea evolves over time, it’s probably because one generation of an idea is better than its predecessor. That’s all right. In fact, it’s progress.

Sixth: Sadly, some efforts will fail, for a variety of reasons, none of which may be your fault. If you’re a true advocate, it won’t be your only effort. This almost goes without saying, but I’ll say it anyway: Failure of one aspect of your advocacy does not mean that you’re a failure. Failure of many aspects of your advocacy does not mean you’re a failure.

And guess what? Some efforts will succeed. When those successes happen, rejoice in them. Not because you did something. Because you helped someone. You helped lift someone up, helped enlighten them, helped them live a better life. Feel free to perform a little hero worship on yourself from time to time.

Seventh: Share ideas and information. Sharing your idea with others validates your idea, for one thing. For another, it helps to generate other ideas that may push your advocacy to another level. And if you have a tool that really works for you, share it. Everyone has a good idea or two. No one has all the good ideas. If how you do something helps someone else kick start their efforts, why not share? I believe that would be advocacy in two places at the same time. Pretty cool.

Eighth: I said this yesterday, and I’ll say it again today. Far more lives are at risk due to inaction. Far more lives are changed due to action. Even when it’s scary for you. Disclosure: It’s scary for me sometimes too.

Finally: Don’t… Stop… Thinking about tomorrow. Recognize that where you are today isn’t (or doesn’t have to be) where you are tomorrow. The past is the past. Only a reference point. Understand that just like diabetes, good or bad, every day is not the same, and will most likely be different. Know, for what it’s worth, I support you… no conditions. Know that many others feel exactly the same way.

You are so completely worthy. And capable. Advocacy comes in all forms. Bravery does too. And your advocacy, big or small, in whatever form it takes, will change lives. Don’t ever be afraid to make a positive impact on someone’s life. I think you’ll find that your life-changing diabetes advocacy will change your life too. That’s not something to be afraid of. That’s something to get excited about.
 
 
 

Define Diabetes Advocacy. There’s more than meets the eye.

After some careful consideration, I feel compelled to weigh in on the idea of advocacy. You may believe that I have no business inserting myself into this conversation, and maybe for you, that’s true. If that’s the case, feel free to move on to another blog. If not, read on.

I don’t usually post something on Sunday. I hadn’t planned to post anything today. Then when I opened up Saturday’s New York Times, I saw a photo that, to me, is a perfect example of what advocacy looks like. For copyright reasons, I can’t show you the photo here. But before you continue, please click over to this New York Times story to see what I’m talking about:
http://www.nytimes.com/2014/01/25/world/europe/ukraine-protests.html?_r=0

Four Orthodox priests. Standing, praying, between protesters and police. It really says a lot to me about what advocacy looks like.

There they were, standing between the two sides. You’ll notice they were standing with their backs to riot police, facing the protesters. Did they turn later and face the riot police too? We don’t know. Did they support one side more than another? We don’t know. I like to think their concern was for everyone involved in the conflict Friday night in Kiev.

But whatever their political leanings (if any), the fact was they were advocating for better outcomes.

Do you think they knew the impact of what they were doing? Do you think they knew exactly how to do what they were doing before they did it? Do you think they knew what the outcome would eventually be?

The truth is, violence returned sometime after that photo was taken, and rubber bullets were fired at protesters, who threw rocks at police and firebombed buildings.

But how many people walked away from the conflict after seeing the advocacy of these four individuals? How many people, on both sides, who saw their display of peace and hope will tell their children about it and encourage them to find better solutions to their problems in the future? That’s an impact that could be decades away from happening. Yet the seeds were planted Friday night. The exponential benefits of their advocacy may not be fully realized for generations. Yet they felt that now was the proper time to make a statement, take a stand.

Do you think these four Orthodox priests were afraid? Of course they were afraid. But they also understood that far more lives are at risk due to inaction. And far more lives are changed for the better due to action.

There were four of them there in the square in Kiev. There wasn’t one priest in four separate locations. Sometimes numbers make a difference, and sometimes it’s okay, even good, to latch ourselves onto someone else’s idea and help their advocacy succeed. Because by helping them succeed, we all succeed. Try it sometime. You’ll find out I’m right about that.

Do you think they were concerned that they weren’t important enough to take on such a task? I think they were only concerned about the task. They probably didn’t know exactly how they were going to do what they did, but they pushed ahead anyway. They didn’t have it all figured out. But they knew what they could do, and they did it.

Very few people begin advocacy efforts, or join existing advocacy initiatives, knowing everything about what they will do or how it will impact others. Or even if their efforts will result in anything measurable.

But they know there is a need. They have the empathy to identify with it, and the resilience to do what they can, even if they don’t know everything about where their inspiration will take them, or even if it will succeed. But even the smallest gesture, in places seemingly unknown, can have a lasting, profound impact on all of us.

With that, I will leave you with this musical interlude from Sara Bareilles. And this admonition: Show me how big your Brave is.


 
 
 

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