Friday, June 22, 2012

Chasing 6.9 (An A1c Story)

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Last week I went to my endocrinologist, full of hope. I had been managing myself better than ever over the past few months; more numbers in range than ever before, as far as I could tell. Due to some developments in my family, I had been eating lower-carb, and I had joined a gym and was trying to run at least three days a week. When I got to the office and the nurse called up my profile, I had to sneak a look at the A1c result as soon as possible.

It was my lowest ever. 7.2. And my first reaction was the prickling of tears behind my eyes.

Tears of disappointment.

I know what you're thinking. The lowest A1c result since she started taking these tests 15 years ago, and she's disappointed?

The problem is, I had just spent the past week congratulating myself on a number that didn't exist. Even with my constant mental reminders not to do this if I wanted to avoid disappointment, my brain had anticipated finally breaking the 7 barrier. I was prematurely convinced that 6.9 was my fate, as Dr. Zoidberg would say, why not? After all, I had done so much since I had last been in that intimidating office.

There was a post on another DBlog (I can't remember which, I'm sorry!) that talked about the danger of congratulating ourselves too much for good numbers, because it tends to lead to beating ourselves up for bad numbers.

Diabetes is a tyranny of numbers, both in the sheer amount of numbers diabetics deal with on a daily basis, and the weight of meaning those numbers hold. We tell ourselves not to internalize these numbers, but how do you not internalize numbers when they represent what's happening internally? There are carb count numbers, blood glucose numbers, A1c numbers, cholesterol numbers, blood pressure numbers, thyroid numbers (everything was good with all of these at my visit, which was amazing). There's also weight. This is another post entirely, but insulin promotes weight gain, particularly when low blood glucose results occur and eating everything in sight seems like the only option.  Of late, many of my hypos are linked to exercise, so a positive thing for weight that requires effort is often negated. Tighter control of one number (BG) leads to less control of another (lbs).  At this appointment, I found that, not only had I kept my A1c lower than ever, but I hadn't gained weight; I had LOST six pounds.

But I want to lose 40, even though I realize it's probably not realistic for me to go back to the weight I was at before I went on insulin, when nothing I ate was being absorbed by my body. (That's a subject for a whole 'nother post.)  So I was still disappointed. It wasn't enough.

I confessed my disappointment to my endo. "I was really hoping for a 6.9 since I've been trying so hard," I said.

"To be honest, I think you're fine right where you are. What's the real difference between 7.2 and 6.9? Practically, in terms of complications? Not much. What would 6.9 mean? Maybe more lows. I think I'd be thrilled if you stayed in this range every time."

That's right, folks. My endo, who I have had, shall we say, a tempestuous relationship with since Day One (another number), who greeted my numbers with dismay and irritation for years (because they were terrible), was telling me she was thrilled and proud and that I shouldn't be so hard on myself. It was so strange I almost laughed. "I've been the problem all these years, not her," I thought. Again, I had to tell myself that neither of us are the "problem," diabetes is. (Again, a subject for its own post.)

Maybe it's good that I'm disappointed by my best, because it represents a new mindset going forward with this condition. Maybe it's not, because perfection is impossible, and leads to burnout. What would I be "happy" with, after 6.9? 6.5? 6? We look for "magic" numbers in A1c, and in weight, but often even when they're reached, we're still not happy, because we secretly want more...well, less. Lower is never enough. What is it? Do we want to disappear?

As diabetics, we're told to "look at the big picture." Maybe that one result doesn't mean anything. Maybe that A1c doesn't mean anything. On one hand, this is helpful thinking, promoting neither complacency nor depression. One success or failure doesn't mean much, because it's one over a lifetime. But sometimes just looking at the big picture means that it's hard to be happy with the little victories, which is depressing in its own way. When you're looking at the rest of your life, with constant maintenance, what is success? In a way, you can't tell until it's over.

How do we manage to do both? How do we both reward ourselves for that small amount of weight loss, that small amount of extra control, while still remaining in the mindset that we still have to keep going? How do we simultaneously exist as Good Cop and Bad Cop regarding our own performance? I don't think that's solely a diabetic question; I think that's a human one.

It's good to celebrate moments; after all, as Stephen Sondheim observed, life is made of them. (Of course, if I'm turning to musical theatre, I could also tell myself to "kiss today goodbye and point me toward tomorrow.") Maybe I should celebrate 7.2. It's a nice number, without any of the hilarious sexual connotations (that I know of).  Maybe I should celebrate that a <7 number is even within the realm of possibility/expectation. Maybe I feel like I need permission to celebrate. In a big way, I thank my endo for telling me I could.

What do you think about celebrating the small stuff? Yay or nay? Good, or limiting?


Wednesday, June 20, 2012

Breaking News: No Breaking Contract for T-Slim Pump

Companies that produce healthcare products that save the lives of patients with chronic illnesses have a moral imperative not to trap their customers as if they had signed a monopolistic Canadian media company’s cellphone plan. There, I said it. I realize that the idea of “moral imperative” in the same sentence as the word “company” is so ludicrous as to potentially earn me a trip to the asylum, but I don’t care. In the past few hours I’ve heard about the T-Slim, a new pump that looks like an iPhone and apparently has an even worse contract-breaking penalty: you can’t. If this pump isn’t working for you and it’s not making your life better in the first weeks, as far as I’ve heard, you can’t give it back. This is unlike most other pump companies, so it’s causing a bit of a stir. I’ve also heard that Dexcom generally won’t let you do a trial run of their CGM sensors, though admittedly my info is from a DSMA-er on Twitter (can I even say CGM or Dexcom in Canada?)

The only thing consistent about diabetes is inconsistency. Your Diabetes May Vary is the phrase that rules the condition. Being expected to spend large amounts of money, whether ours, an insurance company’s, or the province’s, on a healthcare item we’re not sure is going to match the YDMV plan, is not only irritating, it’s stupid, and against everyone’s best interests, moral or not.

The province of Ontario will pay for a new pump for me every five years. Let’s say the T-Slim is available in Ontario and I choose to change from Animas in 2015, because ooh, shiny. (Warranties on most pumps seem to be four years, so I eagerly await my one year of terror between the warranty expiring and the government coverage – also stupid. If it breaks, what? I get to choose between my health and my savings? My health declines and Ontario has to pay for more hospital care later on? What about the unlucky person who gets a pump right before the artificial pancreas comes out and has to wait five years for proper care? I really hope there are some practices in place to deal with this of which I am unaware.) So, I choose this new pump, and it just doesn’t work the way I want it to. I can’t give it back! Five years until I can switch back. A lot can happen to your health in five years. Maybe Ontario does that because “a cure is just five years away!” Ha ha.

Choosing this policy is bad PR in a number of ways. First, it signifies an unwillingness to engage in dialogue, or to understand that YDMV, which belies a lack of understanding of diabetes in general. I certainly want to give my lifetime (or at least five-year) business to a company who doesn’t understand my condition! Second, it intimates a lack of confidence in your product. “No backsies” isn’t really congruent with “we stand behind our product.” Third, it indicates a lack of flexibility, which diabetes demands. It scares me away from even dealing with the company, thinking that customer service reps will likely be trained in “No.”

Finally, these companies need to be aware that we are long-term clients, customers, partners. They have us, likely, for life. Most people with Type 1 diabetes don’t like to be locked in to a product they don’t know if they can use, because we are all already locked into a condition that we can’t get away from. It’s an uncomfortable psychological reminder, when a company says “No backsies,” that diabetes has “no backsies.” We can’t give it back. It’s like the phone plan from hell; you can only break the contract by dying. Do you really want your product to remind us of the condition itself in that way?

When I went on the pump, my Animas rep worked with me. Since my insurance was non-existent, she gave me a lifetime discount on supplies that would bring them just under the amount that the government’s ADP program would pay. That’s why, in the end (even though it was the pump I wanted in the first place) I chose that company. Flexibility. Your life may vary. Understanding that it sucks enough to be diabetic without having to lose scads of money because of it. And you could give it back, no questions asked, if Pumpy was Just Not That Into You. This is smart thinking. Animas could get a slightly reduced amount for supplies for at least the next five years, if not for the rest of my life, or they could stick to their guns, demand 100%...and I would go with the pump company that was new to Canada and offering large discounts. Diabetes care companies should have a moral imperative to treat their customers humanely, but until then, if it's going to be about business, customers can have their say as well.

Pump, sensor, diabetes paraphernalia companies: you have us. For life. Some of you are looking at nickels and dimes. We’re looking at the rest of our lives.

Get the (big) picture? Let us try it. If it’s the right Diabetes Variation, we’ll stick with it.

We’re not going anywhere.