Yesterday I had the rare good fortune to do one of my favorite things. Shoot the breeze with other PWDs (people with diabetes if we’re being politically correct). Miriam Tucker, medical journalist, was in town and invited a bunch of us to brunch. At the table were also Dan Hurley, whose new book, Diabetes Rising, is due out this January, Joy Pape, cde and author, Lee Ann Thill, blogger of The Butter Compartment – don’t you just love it – and art therapist, and two of my fellow peer-mentors, Ruth Charne and Ann Gann.
We assembled at 12:30 and didn’t leave till 3 PM. That gives you an idea of the spirited and passionate conversation we were having, that I would venture to say, always erupts when you fill a table with opinionated PWDs – oops that’s redundant.
When we left I said how much fun it had been because I always learn something. The first thing I learned was no one knew any better than me how many units of insulin it takes to cover a galette as you see above – the house specialty of the French bistro where we were dining. Their galette arrived as a thin buckwheat pancake with an egg on top and spinach inside. (Yes, I was deviating from my typical low-carb meals, but it was their speciality…)
As I peered at it in front of me I asked my table-mates how many carbs do you think this is? Everyone leaned across the table to inspect and then perplexed faces looked back at me. Each guess ventured was obviously and apologetically offered as a guess. And while it didn’t help my dosing any, I warmed and basked in the knowledge that I’m not the only one who’s guessing at my dose a good deal of the time – and even here among such a highly educated group! Of course this led to the timeless debate about low-carb diets, adherence, what does it mean to be “good” or “bad” and as Miriam looked at her pump, unsure it was working, the value of wearing an insulin pump. At the table three did, two didn’t, one had and one’s beginning. I’m waiting on the Solo Micropump to throw my hat in the ring.
We wondered whether pharmas are really invested in curing diabetes. Well, it seemed not many of us really wonder. We talked about what defines “screwing-up” in diabetes – is it just getting a bad number or consciously eating something you “shouldn’t.” That led to should there be “shouldn’ts?Which led to talk about “compliance” and “non-compliance”: Are these appropriate terms for diabetes? The general consensus was they work well for doctors, who are used to thinking in terms of tasks done and not done, but not patients who are living busy and complex lives where doing or not doing a diabetes task is never about one thing. We chatted about why do we feel guilty, even after living with diabetes for more than 30 years and knowing full well our numbers are sometimes not a reflection of our actions, why do we still feel guilty or ashamed with a number like 300?
You should have been there, you would have loved it. If you have a bunch of PWDs in your area why not invite them all to lunch? I promise you it will be educational and entertaining.
For those who wonder, turns out I guessed really well for my galette. With an insulin to carb ratio of 1:17, 2 1/2 units of Apidra left me at a perfect 91 before dinner. Truly it was the gods coming together saying, “riva, today we’re going to give you a break.”
My sincerest thanks to Miriam for arranging brunch and to all who came. And Katie you were missed. There’s little I find more delicious than having food with those who really get it – simply because they really got it.