Hi Everyone!
Please forgive me, I've been quite remiss by not posting lately. I'll spare you the detailed excuse but suffice it to say it includes a flare and continuing exhaustion, along with moodiness, summer activities, and emotional fizzle. But, naturally, God wasn't going to let me off the hook that easily. It's my job to pound away, and I think a few signs were sent my way to remind me.
I'll be back (yes, I promise, though I honestly don't know if it'll be soon...) with updates on some exciting things like the very cool project I'm working on with my firm and Light the Night (this one's pretty darn good if I do say so myself - if I can get off my duff and do some leg work of course), and my new ideas for UII itself.
However, in the meantime, I have a GEM for you. My loudest wake-up call was a bit ironic, I think. At the request of a "sickie" friend on Facebook (i.e., someone who I don't know in real life but have connected with through the groups for those of us with illnesses), I filled out a little online survey about being a Sjoggie. I didn't think much of it, and besides it's not so hard to get me to throw in my two cents (I told my mom I think I walk around with a couple pennies in each pocket just in case an opportunity comes along). Anyway, a little bit later I got a call from the organization who did the survery. Apparently I'm good for something - based on my answers and some further discussion we had on the phone, they felt I'd be a good participant for an upcoming (via phone + internet) focus group, which is mostly about Sjogren's but also aimed at "Health Activists" (waddaya know, I'm an Activist Leader now). As part of this project, they asked me to join a new online community "WEGO Health". I figured why not, plus if I didn't like it I'd just cancel after the focus group. It's actually pretty cool - it feels a good bit like a toned-down version of Facebook (yes, in a good way), and it's the first time I've been around quite so many people passionate about health topics the way the few of us are around here. I've only joined one group so far (for Autoimmune Diseases) and participated in a couple discussions, but I think it's pretty cool. It's also right in line for UII, because it's focused on bringing together health activists to magnify our impact and fascilate knowledge-sharing!
Anyway, on this network you can put up blog posts. A woman, Amy K, put up a post which references several other posts (see, sharing) and discusses some of the emotional and social roadblocks to dealing with invisible illnesses, particularly regarding getting a diagnosis. I know this is a topic familiar to all of us, but I think this is worth looking at. Something interesting I've noticed (from the post but also from comments on it) is that in commiserating (which we sometimes do too much), people have also been identifying tips and tricks that many of us should try in our own doctor visits. Amy also asked us to share the post, to really spread information. I asked her permission to link it here, and she said of course - on the condition that I link back to the WEGO Health discussion where it exists. Who could say no to that! So, here is a link to this useful post on a really cool health-centric networking site, for your consideration: "An Opportunity for Kindness". Bon apetite!
P.S. - if any of you Sjoggies out there might be open to taking the survey and possibly doing the focus group with me, please let me know ASAP so I can give you information! The more participants there are the better the results!!
