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
I was at a diabetes retreat for young adults, the first time I have really been able to interact with people close to my own age. No one knows it but due to issues in my life I was very close to taking WAY more insulin than I should have and being around those people was the only thing that kept me from doing it.
- Submitted to My Diabetes Secret
Don’t ever discount the power of “me too”. It’s a powerful, sometimes life-saving feeling. While it may be a bit hyperbolic to say that all of these diabetes blogs are saving lives every day, we’re certainly helping fight the good fight.
In my diabetes circles, conversations around the #WeAreNotWaiting movement, CGM in the Cloud, Nightscout, #DIYPS, Pebble watches, and all that jazz have been increasing at a rapid pace. Even the Quantified Self community is aware of the growing movement to access our diabetes data. I’m all for the prospect of data access and liberation. If device manufacturers have a plan to join the fun, that’s great. But as the hashtag would suggest, we are not waiting for the day to come when a Dexcom sanctioned application is available. Our data is there, we want it now.
I’ve been particularly curious about the prospects of taking my CGM to the cloud as an adult with diabetes. For parents, being able to remotely monitor your child’s diabetes must lift an incredible burden off your shoulders. The worry will always be there, but having more information will always help. For me? It’s going to take a little more convincing to get on board. Right now I work from home. I don’t travel. And Dayle is here at night. As fancy as remote Dexcom monitoring is, I don’t see why it would benefit me.
I have no problem using my Dexcom receiver as the primary means of CGM data gathering. Especially as a guy, all of my pants have pockets, so it’s not a big deal to have it with me all the time. I am in no way discounting the adults with diabetes that have found benefits in setting up their CGM among the digital cumulonumbi, but I need a little extra convincing that I will find some practical use for this effort besides pointing at it and saying “cool, huh?”. I expressed these thoughts as concisely as possible on Twitter this afternoon and engaged in quite the discussion about what I would want out of Nightscout if I were to embark on the installation process.