Tomorrow I will say nice things.
Yesterday we went to the boys’ new endo. He’s a great guy. Friendly, compassionate, understands how to look at Dexcom Clarity, when to hold ’em, when to fold ’em. Not corny. Not a show off. Really pretty perfect for us. Etc.
But we hate going. We are, all three, so tired of this. Prior to the appointment, Tab was all, “I don’t have time for this. They aren’t going to even tell me anything or do anything to help me. Why do I even need to go?” And Bubs was like, “Ugh.” He has been doing this for six years, so he can’t muster the enthusiasm to articulate the questions about the pointlessness of it. Just: ugh. I used to go to each appointment all bright eyed, hoping to be selected as a finalist on Superstar Patient Mothers of Endocrinology, but now I’m also like: ugh.
One small thing Tab likes, or liked until recently, about going to doctor’s offices, is getting measured. He recently surpassed his father’s height, and he enjoys sharing the fact of his superior height with Joe. But at the endo office, the measuring stick ends at six feet. I asked someone there: aren’t there other teens over six feet tall who you need to measure? It was as if they had never heard of this phenomenon.
This visit, the endo said something to Tab like, “Well you weigh seventy-five kilos, and your average total daily dose is still less than half of seventy-five so you’re still in the honeymoon phase, and you’ll start seeing high postprandial glucose, like 300, and it won’t just come down on it’s own, and that’s when you’ll know the honeymoon is ending, the last thing to go is the fasting blood glucose, but since you were diagnosed in TrialNet, we don’t really know…it could be a long time…” and I thought Tab was right. They really don’t tell us anything, ever. And then I thought, but if there were a message in this ramble it is this: you’re going to get worse.
And then for Bubs it was something like, “You are in a growth spurt, your growth hormone comes out at night while you sleep, this makes you insulin resistant, so sometimes you have been high at night, but I don’t really see a pattern where we would change your basal too much…” and I thought Ugh. And then I thought, maybe he means this will get easier.
Next the endo had Bubs hold his palms together, in what he called the prayer sign, and said that when people have had diabetes for more than five years he looks at this sign because if the pinkie fingers have gaps where you’re trying to press them together, that’s a sign of connective tissue damage caused by long-term high blood glucose…and I’m pretty sure we all thought who needs a Dexcom, or even an A1c, when you’ve got The Prayer Sign?
So, to answer Tab’s original question, the purpose of the appointment was: to get your brother’s prayer sign checked and to self-report our guess of your height, so this could be added to your growth chart.
Toward the end, the endo asked how we were doing in general, and said we must all be working very hard at this, and the guys shrugged, and I am always seeking some psycho-social coddling, so I said we are all ok, but we are so tired of having diabetes and he said something like…
There is a Ph.D. at Harvard with two kids who is working on a cure, using stem cells, not a new technology like Ed Damiano, but a cure, and I think we should see something soon…
And the next bit was about it being in the mouse-phase and my brain shut off.