After 15 years on R/N I was fighting to see an endo specialist. I was very unhappy with my regimen, and for some time I had been hearing inklings about another treatment—the Lantus/Novolog regimen; another random T1 I ran into at a party was on it and told me about it. I wanted to learn more, but our medical coverage was through a university HMO and they basically didn’t DO specialists. Instead, I got several years of YDFLNCA: “You’re Doing Fine Let’s Not Change Anything.” Which is doctorese for “Your disease is really complicated and I’m just a GP and don’t want to mess with things I don’t know enough about.” When a career change meant we finally were on employer-based BCBS, we picked a PCP practice with a sub-specialty in diabetes and linked into Joslin. My first endo appointment there, I experienced YDFLNCA being flipped to “You’re not doing too bad considering your regimen doesn’t make any goddamned sense” (pretty much an actual quote), and they instantly switched me to the analog regimen that Changed. My. Life.
Since then, I’ve had another endo at Joslin who nudged me into trying pump therapy, and who later certified my charts as qualifying me for a CGM, and my current endo who has been very open to trying new things, including having me try Jardiance off-label, which has also made a huge difference. She’s also been really helpful and supportive when I’ve had to go in for surgery, putting me in direct touch with the hospital’s type 1 specialist, and has been very accessible by email when I’ve had things come up in between regular visits.
Soooo… Maybe I’m an outlier, but I’m generally VERY well disposed toward the endos I’ve had. Getting off that outmoded R/N regimen was almost literally like being released from prison—still a signal moment in my life with T1. Right now I feel like I have things so under control that, yeah, my visits are mostly just about scrip renewals. But a lot of that is largely thanks to help I’ve received from her.
I DO agree, though, that I’ve learned far more about the practical, granular details of how to do better with T1 from interacting with other T1s. Important to realize: there was NOTHING like this before the Interwebs. If you were dx’d as an adult (I was 28) you were pretty much on your own. I was dx’d fifteen years before I ever met another T1, and that encounter was more informative than anything I’d ever got from my GPs up to that point. So the DOC has made a huge difference for all of us, to an extent you might not appreciate if you were dx’d in the Internet age. Pre-bolusing, other ways of optimizing your use and management of CGM, a million other things that other T1s can tell you about from their day-to-day experience. So my own story is maybe more a history of how much has changed and evolved. My first encounter with the old version of TUD, as a matter of fact, was also a kind of “coming in from the wilderness” experience not unlike my first appointment with a specialist. At last, someone who understands me!