In light of some of the conversation happening on and around My Diabetes Secret, Cherise decided to use the platform she built to address some of the topics presented without giving an opportunity for the negativity to invade the weekly tweetchat.
One afternoon a car pulled up next to me and the driver rolled down his window gesturing to get my attention. He was holding up a small electronic device that turned out to be a Medtronic insulin pump. He wanted to say hello after seeing my license plate.
I had a lot of thoughts about this comment. I asked Twitter for feedback and got some good responses there. I also shared this on Facebook and got some good feedback there as well. I felt like writing more, but then Dayle and Kerri said all I wanted to say. So you should just read what they wrote.
Finally, I would urge anyone blogging for recognition to consider if a blog is really the right outlet for their goals/needs. Blogging is a form of sharing what it is you want to say. It’s not necessarily a platform for making people pay attention. That’s their choice. If your words or your way of changing the world resonates with other people and is valuable to them, they will listen. And that’s what it should be about – not conferences or freebies.
Defining the DOC: Why Do We Blog? – Imperfect Pancreas
I started this site because I wanted to find some kindred spirits. And that’s the reason I continue to write, and to try and connect. It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier. Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.
You Are HERE. – Six Until Me
The Storification of tweets continues as I recap Day 2 of Stanford Medicine X. After the rush of hosting the opening panel the day before, I figured the rest of the weekend would be a walk in the park. Here are some of the stand-out moments from the day, as told by my ability to be clever in the span of 140 characters.
(And you should too)
We still have a ways to go before being the “token patient” at a conference is a thing of the past.
That, right there, is my most important tweet of the day. Maybe even the entire conference.
I attended Stanford Medicine X this weekend, a conference billed as the intersection of medicine and emerging technologies. Because the conference took up so much of my time, I didn’t have an opportunity to record a traditional podcast. Instead, I asked ePatient scholars to leave a brief comment on their experience. With a little editing magic, here you go. Enjoy!
For more information about Medicine X, visit medicinex.stanford.edu.
Special thanks to everyone who called in:
On a notecard briefly answer one of these questions: what uses up your energy (spoons) the most; how do you most like to expend your energy (spoons)?
If you’re not familiar with the Spoon Theory, I encourage you to read this post from butyoudontlooksick.com. It’s well worth the read. But for the sake of this post, I’ll briefly summarize this whole spoon business.
Essentially, spoons are an arbitrary measurement of energy. “Healthy” people have unlimited spoons to use during the day, but people dealing with chronic pain have a limited number of spoons. As a result, seemingly ordinary tasks like taking a shower or going to the grocery store are weighed against the amount of energy, or spoons, required. Some days you have more spoons at the ready, and can get more done. Other days, you barely have enough spoons to get out of bed. If you ever see #spoonie included on a tweet, now you know what’s going on.
In the grand scheme of things, the Spoon Theory can apply to anyone, to any patient as a way to convey the struggles that come with getting by day to day. With that understanding comes the collaboration at Medicine X. Attendees decorated spoons in the image of the thing that drains their spoons on a daily basis. What consumes you as a patient advocate? What keeps you up at night as a patient? What worries you the most as a caregiver? If you’re honest with yourself, these are incredibly intense questions that can cost a number of spoons to just contemplate.
My spoon was decorated in the spirit of My Diabetes Secret.
Over the next few days I’ll be tweeting up a storm at Stanford Medicine X. Follow my comments on Twitter – @iam_spartacus.
As far as the rest of the diabetes community is concerned, Dana Lewis will be talking about the digital divide among patients and the DIYPS. Scott Strange will be on three different panels discussing mental health and chronic disease patients. And Kim Vlasnik will be giving an ePatient Ignite Talk on the main stage. You can also follow Heather Gabel on Twitter as she shares her experiences during the conference.
If you would like to see Kim’s talk live, please sign up for the Global Access Program so you can watch the livestream from the comfort of your own home.
Medicine X is a big deal to me, as can be evident by its inclusion in the menu bar of this blog, if you have the time, I hope you take a look.
I thought you and your community might be interested in this video:
Where do I begin? Continue reading