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The Revolution Will Be Blogged.

Yesterday afternoon I was lucky enough to be back at Clara Barton Camp for Family Camp, speaking with some of the parents (and a good number of the kids) about using the Internet for diabetes information.  I've had similar discussions with other groups, but each time there's something new to learn, and something cool to share.

Oh wait.  But I've never done this session with my daughter padding around the room and pointing at people, asking "What's daaaaaat?"

This discussion was put on my calendar recently, so finding a babysitter quickly wasn't working out for me.  I mentioned to Abby, who works as the Charge Nurse at CBC, that I may not be able to make it. 

"Don't worry.  Bring her - I'll watch her."

"Seriously?  But it's not exactly in your job description at SUM ..." 

"Not a problem.  I love kids."

So while I participated in a discussion with the parents and kids, Abby and BSparl hung out. 

It's hard to recap a discussion that goes in a million different directions; it's like tracking blood sugar trends.  The parents of kids with diabetes are always amazingly insightful, emotional, and open, and their kids are nothing short of amazing in their honesty about diabetes. 

The session was very informal and open-forum style, with everyone gathered in the Great Room, chairs circled like wagons.  We talked about making the decision to share personal health information online, and the personal choice to disclose your name/kid's names/cat's names.  We talked about making clinical research accessible and digestible for both parents and kids, letting even the younger kids own and understand information about their disease.  And, of course, we talked about social networks.

"There are niche communities even within this niche community.  Back when I first started blogging, I wanted to find other 20-somethings who were going out on dates, finding jobs, and doing stuff, you know?  And now, I want to connect with other parents who have diabetes.  There's truly something for everyone, but if you can't find what you're looking for, it's easy to create for yourself."

The diabetes online community wasn't created because someone paid us or because a big company tried to wrangle us all into the Internet to share our stories.  The DOC was borne out of necessity.  The emotional and psychological parts of diabetes management sometimes require more time and attention than blood sugars and doctor's appointments because you need to have your head truly in the game to manage this demanding disease.  This kind of support is necessary, readily available, and part of a true patient revolution.  (And it appears the revolution will be blogged!)

Even though I feel very supported by my husband and family, and by all of you guys in the DOC, diabetes is always showing me that I'm never done learning.  I'm grateful for the many support outlets available to me, and I'm inspired by CBC to help the DOC reach more families who could use someone to lean on.  We're in this together, and every time I visit camp or hang out at a support group or conference or meet-up, that point is driven home.  People with diabetes are some of the most accepting and supportive people I've ever met.

... besides, there's something so awesome about bringing BSparl to camp, and watching her point to other people's pumps ("Puuuuuum!") and exhausting herself playing with her mommy's friends. 

(Thanks for watching her yesterday, Abby!!  She fell asleep as soon as we got into the car.)

Comments

AweSUM post! Wish I could have been there!

Thanks Keri. I have learned a lot of the technical stuff from our endo, but the emotional stuff and the real world stuff comes from the online diabetes community. Thank you.

What????

I'm having trouble getting past the "I visited family camp at CBC" part knowing we were there last year and only skipped this year bc we went to FFL. So sorry we missed you!

Great post, Kerri. Like the way you described the inception of the DOC and how so many of us came into it... Great recap and sounds like Abby and BSparl had a blast together!

Don't forget the part where she and I were swapping dexcoms back and forth for a solid 5 minutes. No big deal. That kid is great, sign me up for babysitting anytime, free of charge :)

Okay, BSparl? SO adorable while she's sleeping!!! (She's adorable anyway, but you know that I'm sure!)

Also, even though I'm not technically part of the DOC, it's really helped me in the sense that I thought I was nuts for seeing a blood sugar drop LOWER after having juice. I thought that it was okay to treat a low with a candy bar. Because of the DOC, I sleep with my meter on my bed right next to me, which has helped me quite a few times. I learned that the reason why I always have a migraine after I exercise is because exercise drops you (and how! My worst lows are usually from exercise). I learned to carry winkies (AKA Smarties) on me at all times. I learned about the cute little Gerber juice bottles that won't burst if you carry them around and let them get buried at the bottom of your bag for a year.


I've learned about having a backup meter. I've learned about CGMs (and I WILL push for it at my next endo appointment).

Most importantly, I've learned that I'm the only one who knows my disease. My endocrinologist doesn't know what it's like to live with it on a daily basis. My father's condition, though the same, reacts differently to different things. Outside people can only guess what it means to say that juice is a life-saving treatment. I may not have found much community here (though you guys are SO supportive), but I've found people who "get" at least a small aspect of it. And I thank you guys for that.

I have learned so much from you and the DOC, that I count it as my most valuable parenting resource!

I hope someday M will be speaking to HER diabetes camp when she's an adult!

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