I just want someone I can tell how I really feel too, without fear of judgment or abandonment. I want someone who will check in on me, and will say “I know you aren’t doing okay, please tell me what’s wrong”.
I want a friend.
This was shared on My Chronic Disease Secret last week.
Today, Kerri wrote this:
I miss the old school blogging, quite a bit. I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”
As a result, I told Facebook:
I feel guilty saying ‘what happened to the diabetes community?’ to a community of followers who mostly have or know someone living with diabetes.
It’s important for me to remember that the community is, and will always be there, even if I’ve changed.
There’s been quite a discussion thus far.
All of this sort of ties back into something I wrote a few weeks ago about the sense that I’ve become more detached the diabetes community.
What I think I’m getting at is I’m feeling nostalgic for the way things “used to be” even if the way things are right now are a direct result of the growth the diabetes online community has experienced over the past five to seven years depending on your tenure. As we all grow up, have kids, move, get married, find new priorities, it’s difficult to hold onto everything that was a priority in years past. There are times when this blog feel like a mandatory ritual rather than an exciting routine.
After my blog post last week on Symplur about the impact and influence of #hcsm, I sent Dana a few questions for a follow up interview. Sure, it doesn’t match the breadth and depth of a podcast, or a podcast, or a podcast, and there sadly was no mention of cupcakes, but it’s still a good read.
Head over to Symplur to read Dana’s thoughts on the past, present, and future of #hcsm.
On Monday I asked the Internet why there wasn’t a “My Cancer Secret” similar to My Diabetes Secret.
Yesterday, with some help, I took matters into my own hands with the launch of My Chronic Disease Secret.
I wrote an introductory post, which you can read by clicking on this link. Here’s the punchline.
But diabetes isn’t the only chronic disease impacting lives around the world. Where is My Cancer Secret? Why isn’t there a My Cystic Fibrosis Secret? Shouldn’t there be a My Depression Secret?
Here it is.
My Chronic Disease Secret is building upon what My Diabetes Secret started, offering a safe place for anyone living with or impacted by a chronic disease to share their secret free of shame, of stigma, of judgement.
More will surely follow as this gets off the ground, but I feel good about this one. Given how much of an impact (I believe) My Diabetes Secret has had on the diabetes community, it only seems natural, and fair, to give the rest of the chronic disease community an opportunity to share what they are feeling.
This week, Britt Johnson joins me for a discussion about freelancing as a patient advocate, the difficult work/life balance of patient advocacy, and a look back on her 48-hour live tweeting effort of her #ChronicLife. Enjoy.
Follow Britt on Twitter @hurtblogger and thehurtblogger.com.
While the 117,637 cumulative users, 1,366 participants with more than 100 tweets, and representation in 217 countries is fantastic #hcsm participation data, I think 20 is the most impressive number. At least 20 different tweet chat communities exist, in part, because someone participated in a #hcsm chat and wanted to do more for their community. Of course this says nothing of the non-profit organizations, outreach and advocacy programs, and other patient-generated initiatives that owe some form of thanks to the #hcsm community for planting or cultivating an idea into action. This shouldn’t discount or discredit the amazing accomplishments of the other patient communities and their respective tweet chats. But I think it’s clear that #hcsm is more than just a hashtag, it’s a social movement.
This month I wrote about “The Influence and Impact of #hcsm” for Symplur. If you like data, you should go read this.
Dayle has been on a breakfast smoothie kick for a while now. Most weekday mornings she has a spinach, ginger, cucumber, avocado, and frozen banana smoothie. Until this weekend, this was created with the help of a hand blender, like this one. But a couple of weeks ago I started to experiment with a smoothie recipe of my own. I figure anything that can get me off of my double chocolate granola fascination is worth exploring.
This is what I’ve settled on right now: kale, greek yogurt, frozen strawberries, and frozen bananas. The ratios of ingredients still needs some work, but I’m already coming away just as (if not more) satisfied for breakfast with a less severe postprandial blood glucose spike.
But, any long term, dual smoothie in the morning fun required a better solution than a hand mixer. As convenient as a hand mixer is, it felt like time to look for something more.