Over the past few weeks, diabetes has been putting some unusual thoughts in my mind. I have been…
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…feeling justified, when the kinked sensor wire confirmed that I made the right choice in yanking it:
…feeling victorious, when a quick response to a CGM’s “Predicted Low” alert prevented off a subsequent “Low”.
…feeling curious about the story of the person who left the pizza box labeled “Gluten Free” in the office fridge for a week:
…feeling wasteful, after burning 25 glucose tablets over one weekend while attempting to assemble a backyard ice-skating rink:
…feeling addicted, when replacing a CGM sensor in a public restroom was more enticing than going without one.
…feeling photogenic, when my blood glucose result was suitable for commercials:
…feeling motivated to get my A1C down to the next lower whole-number after a friend boasted a similar accomplishment
…feeling appreciated, when given the opportunity to guest-post on the Loop Blog
…feeling empowered, because a fortune cookie with 21st Century diabetes-sense told me so
…feeling forgetful when an unexpected sensor glucose of 49 to reminds me that I had Threshold Suspend turned off:
…feeling confident enough to publicly display the battle scars from a disobedient infusion site:
…feeling joy at finally mastering a 65-carb, 8.1 unit dual-wave lunchtime bolus … even if just once. ever:
…feeling negligent over my attention towards this blog and this community:
…feeling burned-out, not over diabetes, but over social media in general. But if that means I spend more face-time (not FaceTime®) with my family, I suppose that’s a good thing.
When I think of an advocate (outside of the diabetes-realm), I think of someone who steps up to bat for the little guy. Not quite a lawyer, not quite a lobbyist. But someone with the know-how, the connections, and (hopefully) the influence to make sure somebody gets that to which he or she is entitled. An advocate is someone who brings the qualities to empower someone else who may feel they are at a disadvantage. Or, maybe, they bring the time and effort to fight the necessary battles on behalf of the person whose time is too consumed with the very thing that necessitates the battle. It’s often a one-on-one sort of thing.
For a student who is unable to climb a flight of stairs, an advocate may pressure a school to install ADA-compliant ramps, as opposed to shuttling the student to a different school in another town that already them.
For a parent who cannot transport their disabled child to doctor’s appointments, an advocate may help solicit donations for a wheelchair-lift-equipped vehicle.
For the victim of a crime, an advocate may help to deal with the logistical difficulties of working through the legal system, obtaining emotional counseling, or finding peer-support.
There are many types of advocates. They are often affiliated with nonprofits, some are volunteers. But generally, they tend to work with the best interests of the individual they are supporting in mind.
The diabetes community is different. We have hundreds, if not thousands, of self-proclaimed advocates. Our advocates are more of a collective voice than one-on-one providers of guidance. There’s no doubt that this type of advocacy works – StripSafely and #DOCasksFDA immediately come to mind. The power of numbers comes into play here: the larger the numbers, the louder the message, which leads to a greater influence.
But I worry that something gets lost in the numbers. Although I, personally, am very much a “numbers person”, larger numbers tend to lack any sort of realistic context to me. According to the American Diabetes Association , the number of Americans with diabetes in 2012 was 29.1 million, up from 25.8 million just two years prior. There are other numbers at that link: 69,071. 282,000. 73,000. 245 billion.
I won’t get into what those numbers represent (you can click over to the ADA page if you care to look them up), but each one can be – and probably has been – used in a frightening statistic to try to sway some sort of policy or public opinion. But in the end, do the big numbers work?
I simply can’t comprehend the reality of numbers like that. Like the National Debt, in the end these numbers all translate in my mind simply to “a lot”. Or, in some cases, “insurmountable” and “why even bother trying?”
And when someone tries to tackle that big number, 29.1 million, to which my contribution is a measly – although unique (as they all are) one – it hardly makes me feel represented or that I’ll see any sort of benefit from the effort anytime soon. When you make a broad generalization across millions, you tend to miss a lot. (At a high level, they miss the differentiation between Types, but even within the Types there are countless unique cases).
So, while I appreciate and recognize the benefit of the large-scale efforts, they just don’t have the same effect as the other types of advocacy. The one-on-one kind.
I think the shift to large-scale advocacy may be why some folks, especially the newly diagnosed and their families, often feel discouraged after a few years. They start out vigorously raising money and writing to their senators and spreading awareness, and then the motivation dies out.
Because they’re still left to fight the battles with insurance companies.
They’re still left to learn how to develop the perfect 504 plan and set it into motion. By themselves.
During the first week after discharge from the hospital, they still need to distribute fuzzy eighth-generation photocopies of the “signs of hypoglycemia” handout developed in 1984 to their supervisors and their teachers, because they don’t yet know how to explain what is really happening.
And they still struggle with social acceptance, because the generic literature that is available on this very topic is geared towards the masses and not the individual person. Yet feelings and emotions of acceptance are very personal, and a we all know that “one-size-fits-all” never quite fits anyone perfectly.
(And as I write the last few lines, I contemplate replacing “they” with “we” — the difference not trying to be exclusionary, but to reflect the amount of experience and learnedness a person has developed – the hard way – in these areas).
But back to the numbers.
The numbers that really matter are the low ones.
In the vast majority of my interactions, I am the “one of these kids” who is not like the others. I can see what things about me are different. When it comes to how diabetes makes my life different than that of a non-D, that contrast and that attention, is meaningful, powerful, and noticeable. Certainly moreso than being lumped in a group of 29.1 million.
When diabetes affects more than one member of a family, it’s easy to comprehend the big impact of these small numeric increments. These numbers hit me harder than the number one, because I know the subsequent diagnoses aren’t simply the “repeat” phase that follows lather and rinse. It’s more like, “turn off the water. Step out of the shower. Dry off. Get dressed.” Then repeat. Day after day.
It’s a small enough analogy that it makes sense. It’s more meaningful than two or three out of 29.1 million.
So what’s my point in all of this? I think we need to revitalize the small-scale advocacy. To complement the big stuff, not replace it.
It’s not that we should plaster Piper’s image and the fright-filled caption across the media everywhere. That doesn’t help explain the plight. And for Piper, I’m sure that she didn’t find that the day after this ad was published was any easier than the day before.
I think we need to return to the grassroots of advocacy. I think we need to help and support those who need help and support. We should get up-close-and-personal with the people who are affected most, and so something so that their tomorrow is better than their yesterday.
Empower them to make their own lives and their own interactions better. Accompany them to the school Superintendent’s office. Help them to develop their personalized “I have diabetes” revelations to their new bosses. Assist in the personal and individualized appeals to the insurance company denials.
I’m not quite sure who can do this in a coordinated, organized manner, but I’m sure we can all find one person – offline and in person – for whom to advocate in their interactions and (inevitably) confrontations.
For those who feel that attaching their name to a letter or Tweet that matches thousands of others just isn’t enough, or who feel that they are ready to take their advocacy to another level, this may just be a way.
To borrow (and re-purpose) a phrase from Bozell, “Be the voice of One“.
In the spirit of the Ten Things I posted last month, I’ve decided to follow the same path and write about a few more other things that are going on in quick, digestible paragraphs. It’s easy to read, and – to be honest – easy to write.
Each could probably merit a post of its own, but I just haven’t got the time to do it, so I present you with the Cliffs Notes.
~~ UN ~~
I’ve mentioned this before — my weight has never really been a problem for me. But now I’m starting to notice a bit of a change. My belt is moving to the next notch. When showering, I feel a bit more roundness, and my site inserters are rocking a bit more when placed on the non-flat surface. And at my last endo appointment, the scale crossed over to the next decade, causing the big weight on the bottom rail to slide over one more notch. That hasn’t happened for as long as I can remember. This must be what happens when you turn 40. I want to reverse this trend before it becomes noticeable – but having never done it before in my life, it’s tough to figure out how. But at least I now feel a bit more “normal”.
~~ DEUX ~~
While at the supermarket on Monday night, I felt a low coming on, so I bought this. (it’s not every day that I get to eat TastyKakes, and at $2.50 it’s a bargain!). It’s now Wednesday evening, and I’ve eaten 5 of the 6 packs. All because of lows. I wonder if this type of behavior is what’s leading to the item above. (Also, I’ve been keeping the box underneath the passenger seat of my car, because I’m ashamed to bring the treat inside of the house — do you think something’s wrong with me?)
It’s been quite awhile since I made the decision to keep the 530G/Enlite (pump/CGM) system. If you followed me through the process earlier in the year, you know it was not an easy decision. Not by a long shot.
But I gave it every benefit of the doubt during my trial, and the Medtronic team tried really hard to get me to like it. And you know what? It worked. Over the past several months, I’ve really grown to like the system and have been very comfortable with my decision.
The sensor works well for me, and I understand how to make it well. The pump is comfortable and familiar, and talks to all of my other devices. The CGM is not as lumpy as its biggest competitor, and when I get out of the pool or ocean and back in range of the receiver-pump, it backfills the last 40 minutes of readings so i know what’s going on. The ISIGs give me a window into the CGM’s workings and lets me know if my sensor is performing well even if it’s got a bad calibration. The proprietary non-Luer connector makes the reservoir easier to fill than with the more common method. The pump’s raised blister-like buttons make it easy to operate without looking at it (don’t try this at home). And the clear/white case gives it a cool and modern look that I had never before anticipated – nor cared about. And CareLink!
Try to take it away and replace it with another pump or CGM, and you’ll be in for a fight.
And now, after all of the angst and turmoil of my trial, they’re telling me I can’t keep it.
They is my insurance company — an insurance company that has treated me fairly since I first got on one of their policies 17 years ago. I’ve changed employers, plans, and coverages, but always were fortunate to have the same company administering them. They, through my current (wife’s) employer-sponsored plan, have been really good at providing coverage to keep me healthy rather than simply keep me alive until the next open-enrollment period.
This started out as a comment to Chris’s blog post yesterday, asking for stories on how we were first transitioned in to using a pump. Because I rambled a bit longer than is appropriate for a comment (as I tend to do), I decided to share it here. Have your own pump-start story? Please post it over there, on A Consequence of Hypoglycemia.
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From the time my first pump-ever insulin pump arrived at my door to the time I got to pop in the battery and start using it was about a month. BUT – there was good reason for that. I was preparing to go on a European vacation, and then was starting a new job when I returned. For obvious reasons, I didn’t want to “plug-in” and leave the country, and also for obvious reasons, I didn’t want to start my new pump on Day One, Week One of the new job; thing would be too hectic and I wanted to be “settled in” for a bit. So I waited until Day One of Week Two to begin my training. (Meanwhile, during that month, Medtronic had introduced the first pump with an integrated CGM – the 522 – leaving my brand-new-never-used model obsolete. I figured it was just bad luck, and didn’t know enough to see if I could trade mine for the newer one).
The CDE from my endo’s office, who is also a Type 1 and also a “certified” Medtronic trainer, came to my apartment to train me and get me started on saline. Previously in the office, she had counseled told me about what a pump can do, but not yet on how to make it do it. This is what the training was for.