In prepping for a chat I helped facilitate for the team at The Patient Revolution, I came across this quote in Victor’s book: These words really build a visual around the effort of diabetes management. There’s a tremendous amount of work that goes on behind-the-scenes of diabetes – so many individual threads and colors on this particular patient loom –…
Yesterday, I was at a meeting where the audience was decidedly not a diabetes one. And in explaining my experiences with diabetes, I had to give an overview of what type 1 diabetes is and how long I’ve been living with it. “I was diagnosed at the age of seven. It will be 32 years this September …” After the…
200 mg/dL. Often, when I see a number like that, I think, “Oh, it’s okay. It doesn’t define me. It’s not an assessment of my self-worth. I’m still a decent person despite an out-of-range blood sugar.” And that’s true. I’ve written about how true that is a pile of times*. These numbers aren’t ME. … but they’re still mine. The problem…
This was part of my daughter’s school work* last week: What about the thing that I am certain will happen today? I will have a rough blood sugar roller coaster. – nope. That’s not a certainty. Today’s been pretty mellow, to be honest. The temperature will be exactly 72 degrees and sunny today – nope. I live in New England….
Dino Days
Diabetes Advocacy, Diabetes and Emotions, Diabetes and Family, Diabetes Community, Diabetes Online Community, Psychosocial Support, Real Life Diabetes, RelationshipsBeing diagnosed with diabetes as a child twists time, making me feel like I’m not terribly old but that my diabetes is ancient and withered. Looking back at an online journal that chronicles almost half my life with diabetes paints me as a digital dinosaur, one whose story and community has evolved in response to time, technology, and ability. The…
The game is pretty simple: a blue, plastic board with a bunch of pieces cut out, and a series of yellow pieces that each fit into their specific spaces. Then you set a timer, scramble to fit each yellow piece into its spot before the timer buzzes, and try not to twitch from the stress. Oh, did I mention that…
Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses
Diabetes Advocacy, Diabetes and Emotions, Mental Health, Psychosocial Support, Real Life DiabetesMindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. Today, she’s sharing the why behind her efforts on SixUntilMe. And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project,…
Voices Carry.
Diabetes Advocacy, Diabetes and Emotions, Diabetes Community, Diabetes Online Community, Psychosocial Support, Real Life DiabetesThere’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up. I identify completely with “experienced an analogue childhood and a digital adulthood.” My journaling has gone from paper journals to blog posts, too. I used to keep volumes of chaotic ramblings as a…
What to Work On.
Blood Sugars, Dexcom, Diabetes and Emotions, Exercise & Fitness, Psychosocial Support, Real Life DiabetesI’ve gotten lazy in my diabetes management. And I’m not proud of it. My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control. Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties. Yeah. I’m…
I’ve never had nightmares like this one before Problem is, when I wake, it’s still there and I’m floored Because every damn day there’s another news flash Showing me that some leaders just follow cash. I used to be iffy, and then was concerned. But panic is what this new paradigm’s earned. I’m a person and with me comes chronic…
Diabetes Blog Week: Message Monday.
Diabetes Advocacy, Diabetes and Emotions, Diabetes Community, Diabetes Online Community, Psychosocial Support, Real Life Diabetes, RelationshipsIt’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community. And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)? Karen kindly brings us closer…
Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a Bachelors degree in Psychology and a Masters degree in Marriage and Family Therapy. She lives with her husband, their 6-year-old Dachshund Amos,…
How Real Do You Want It?
Diabetes Advocacy, Diabetes and Emotions, Diabetes Community, Diabetes Complications, Psychosocial Support, Real Life DiabetesOver the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew…
Talking About Diabetes Burnout.
Diabetes Advocacy, Diabetes and Emotions, Diabetes Community, Diabetes Complications, Diabetes Online Community, Diabetes Videos, Psychosocial Support, Real Life DiabetesDiabetes is every day, but burnout doesn’t have to be. You might also like: Diabetes Blog Week: Message Monday. Rewind: These Boots Were Made for Talking Type 1 Origins: Talking Comic Books with Partha Kar. Perspectives on Diabetes: Why Children with Diabetes Matters.
A few weeks ago, I was diagnosed with macular edema. It’s a complication you can’t see, one that I can’t see until I can’t see. Sophisticated computer equipment and camera technology have afforded me the opportunity to find out early, giving me the chance to track this issue closely and opt for aggressive treatment options (laser surgery, medicated eye drops,…
If living with a chronic illness gave people superhero powers, it would explain Jenni Prokopy of ChronicBabe. Jenni, creator of the empowerment resource ChronicBabe, wanted to “provide an online community for younger women with chronic health issues who want to live their best lives.” And she definitely did. When she’s not promoting her site, traveling to conferences, and bringing sexy…