Community

This is the second part of a triptych of diabetes posts. The first part references the time just before my diagnosis. This part covers the most recent year of my post-diagnosis life. The final piece recounts some developments from last month and a view of the future.

It’s that time again. September 8th. The anniversary of my diabetes diagnosis. My “diaversary.” D-Day.

A lot has happened since last year when I wrote about my 10th D-Day. I wouldn’t say that date was any kind of watershed, but it certainly reminded me that my ability to get the results I wanted out of my diabetes self-management wasn’t where I had hoped it would be ten years in. In fact, I would say that my whole time with diabetes has been a gradual improvement from complete ignorance to middling abilities with a healthy dose of almost daily “WTF?!” moments and compromises. But that just wasn’t working for me.

I wish I could say that since last D-Day I’ve figured a lot of things out and that I’ve seen an overall improvement in my diabetes indicators — those being my 14-day blood glucose average and my quarterly A1c labs. While I have moved a lot closer to having confidence in my basal insulin rates, bolus dosages, and exercise rubric, my A1c is slightly higher than it was at this point last year.

Nevertheless, despite all these struggles — and, yes, I do consider them “struggles” — I feel like I’m in a much better frame of mind than I was around this time last year. For sure, I still get very frustrated from time to time, both with my own abilities and (mostly) with my lump of a pancreas and the cyborg technology that tries to pick up the slack. But I feel like I have a better support system than I did earlier last year when I was really trying to get a new handle on everything.

That support mostly comes from the Diabetes Online Community, the D-OC. I do still get my medical advice from my endocrinologist, her staff, and my friendly nurse educators. And I’m constantly amazed at the level of engagement, sacrifice, encouragement and flexibility that Lisa gives when it comes to my disease. There’s just something about that virtual community, though, that really helps my mind.

It all started late-ish last summer via Twitter. My Twitter relationship started much earlier after having lunch with a far-off friend that had a lot of “Twitter this” and “Twitter back-channel that” and more hashtags than I could handle. So I went on, got an account, added a few people I already knew, and then treated it like a second Facebook status stream, since I had no idea what it was actually good for.

Then one day I searched for “mg/dL” and it all changed.*

As with so many people with diabetes, I think I found Kerri first. If diabetes has an online superstar — albeit a totally humble, accessible, down-to-earth superstar — she’s the one. From there I found an active group of people that seems to grow by the week. I can’t keep up with everyone, but I find myself getting a lot from the people with diabetes I do follow: information, advice, conversation, encouragement, opportunities for activism, news, indignation, banter, jibber-jabber, and all those tasty-tasty links to blog posts and articles that I never find the time to read. I only hope that I’ve given back a fraction of what I’ve gained.

From these wonderful people — online friends, really — I’ve learned about devices, medications, and treatment philosophies that I never knew existed. But more importantly, I’ve seen what’s possible. The low A1c and more-or-less normal blood glucose levels while leading more-or-less normal lives. The marathons and triathlons they’ve done. Heck, even professional cycling and the winter Olympics!

But mostly I’ve found community. A bunch of people who know what it’s like to try to do everything “just right” and still end up with crazy high or low blood sugars. People who have spent a lot of time in doctors’ offices (and occasionally in the ER). People who wake up in the middle of the night in a cold, hypoglycemic sweat and worry about the toll these nighttime events have on their families’ peace of mind. People who don’t need anyone else’s pity or ill-informed advice but will settle for a little leeway to do the best we can. People who are willing to share our triumphs and frequently our setbacks.

This is the first online community I’ve really connected with. It’s (not coincidentally) also the first I’ve found that isn’t cliquish or riven with political/ideological/petty differences. Thankfully, it’s pretty free of trolls and spammers and general ass-hats. We’re just a friendly collection of people striving to do the best with our insulin the only way we know how. And I’ll take that, because whatever the limitations diabetes puts on us — and let’s be honest, it does make everything a bit harder — it’s nice to know there’s someone else out there who has gone through it and is willing to open up (even a tiny bit) about what it’s been like to work through it and (maybe) get beyond it.

That’s my hope for the coming year, my twelfth with diabetes: to continue to make progress — even if it doesn’t always show up in my numbers — and to share that hope with the people who care about me in real life as well as my fellow travelers I’ve met over the last year online.


* — I think this tweet may have been among my first after I became aware of the D-OC.

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3 Responses to Community

  1. Jeff

    It always seems strange to wish someone a Happy Diaversary. But it does mark a point where you’ve made it through another year with diabetes, despite the literal highs and lows. You’re in good company. My Diaversary is September 10th, this year will be my 38th one. Kerri Morrone Sparling’s Diaversary is September 11th. Interesting cluster I should say.

    I wish you the best of blood glucose readings for the next year. Maybe this will be the one where we meetup in real life!

  2. Karen says:

    Happy Diaversary to you. (Although like Bernard I think it seems a bit odd to say “happy” – until you think about celebrating another year of living successfully with diabetes.)

    I loved reading your thoughts on the D-OC and I agree 100%. I’m so thankful to have found a group of people who know what it feels like to fight the fight every day – and who also love chocolate croissants and cats. ;)

  3. Jeff Mather says:

    Bernard and Karen: Thanks for the D-Day wishes! Another year of living, of thriving with a disease that in another time or place would have killed me, that’s always going to be something worth celebrating. It’s nice to be in such good company! I’ll be at the WEGO Boston meet-up next week, and maybe I’ll see one of you there.

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