What do you want to know about continuing Health Activism with Chronic Pain?

This November 22nd at 8pm EST, WEGO Health will be hosting an exclusive webinar with three awesome Chronic Pain Health Activists:

Julia - Sjogren's Syndrome Activist from Reasonably Well Julia

Kelly - Rheumatoid Arthritis Activist from RA Warrior

Amy K - Fibromyalgia and Mental Health Activist from Unavitabella and MHSM Chat

The webinar will center around how these three leaders work every day to spread the word about chronic pain while supporting members of their communities and living with pain themselves. They will also be offering tips and tricks of the trade to help you on your Health Activism journey. It's going to be an incredible event and we'd love for you to be in attendance! Check out the event page for details and be sure to RSVP!

For the last portion of the webinar, there will be a Q&A section where we will ask the ladies questions about everything related to Chronic Pain and Health Activism. Attendees of the webinar will be able to send in their questions via the webinar chat function - but I wanted to be sure to start a discussion here so you can list questions you may want to ask.

What concerns do you have about running a community centered on Chronic Pain? What do you want advice on? What would you like any or all of these ladies to tell you? Is there some tips you'd like for blogging or tweeting about Chronic Pain?

Share any questions you want these ladies to answer below!

Tags: Amy, Julia, K, Kelly, chronic pain, health activism, webinar

0 members like this

Replies to This Discussion

Permalink Reply by DeeNJai on November 9, 2010 at 2:51pm

Would love be able attend the chat session but it will 1am in the UK whe you start the chat session.
Dee

Permalink Reply by amanda on November 9, 2010 at 3:06pm

Hi Dee! I'm sorry that you won't be able to attend - 1am would be a bit late for you to tune in. We will hopefully have the webinar posted for you to watch at a later time. But until then - if you have any questions you would ask could you attend - feel free to share those and I may be able to ask the panelists during the webinar! -Amanda

Permalink Reply by westr on November 9, 2010 at 5:04pm

Studies have shown that more people visit their doctor because of chronic pain than any other single cause (~ one-third to one-half of all doctor visits, are the stats I've seen). That said, why is research investment in PAIN significantly underfunded with respect to all other human illnesses? Should be the opposite! In spite of this, there are many web communities devoted to chronic pain discussions, but interestingly, none devoted to "Health Activism with Chronic Pain". Will this WEGO community be just another group devoted to discussing this topic, or indeed, is it intent on raising awareness of chronic pain to a level similar to that of breast cancer and AIDs?

Permalink Reply by amanda on November 10, 2010 at 12:10pm

Great question about awareness westr. Going from "talking" to "taking action" is such a huge topic here at WEGO Health and one that I think will be awesome to ask our panelists in regards to chronic pain activism. Thanks for bringing it here - I will try to fit it into our Q&A section!

Permalink Reply by westr on November 10, 2010 at 12:26pm

I recently read that a lot of pharmas are pulling up their stakes in pain research. Too complex?? It's pathetic that in the 21st century, the only meds available for pain are essentially aspirin/NSAIDs and narcotics. Never has there been a better case in healthcare for ACTIVISM than this. I hope that this is the Pain community that breaks the inertia barrier.

Permalink Reply by westr on November 10, 2010 at 2:59pm

see also: http://bit.ly/d0l4Z0 "the patient groups most likely to be e-empowered were consumers with mental health or pain-related conditions. "This is not surprising given how difficult diagnosis and treatment can be for patients with these conditions,"

Read more: 99 Million E-Empowered Consumers are Using Online Information and Tools to Take a More Active Role in Their Healthcare -

Permalink Reply by Alicia C. Staley on November 10, 2010 at 3:25pm

Hi there,
I clicked through to your profile and see you're a professor at Upstate! I graduated from SU - and spent some time at Upstate. I was diagnosed with Hodgkin's as a sophmore at SU and spent some time there getting follow-up care [was treated at UofR Cancer Center]. Great place! You've asked some great questions - and hopefully, we'll be able to learn how to go about raising awareness for chronic pain and developing some measurable ways to mark our progress.
alicia

Permalink Reply by westr on November 10, 2010 at 3:39pm

Wow, small world, and I find out that we were next door neighbors right after reading your impressive "My cancer by the numbers" (http://bit.ly/c6ADAf). Humbles me to hear that.

-Bob

Permalink Reply by Alicia C. Staley on November 17, 2010 at 1:17pm

Hey, I was just thinking --- can you cover how you define "pain" and "chronic pain" in the session? I know it might seem simplistic, but I know many people might not realize their dealing with a chronic pain situation. After going through breast cancer, I adopted the "tough it out" mentality, and that's not always the best way to deal with pain of any kind. I'd love your thoughts on this --- Alicia

Permalink Reply by westr on November 17, 2010 at 2:27pm

Alicia (@stales),

"Pain" could be either acute or chronic. I assume that this group of ~ 135 people all have the latter (chronic). Mechanisms are different. Apparently, chronic pain involves more permanent changes in the communication pathways in the spinal cord and likely brain, such that pain sensation is "always on" even in the absence of the normal stimulus. Since there are many different neuronal receptors, ion channels, etc, involved in both acute and chronic pain, deconvoluting the various pathways, and networks of interacting pathways, becomes arduous. Nature Medicine has a "Focus" this month (Nov 2010) that describes this sort of thing in (too much) detail: http://www.nature.com/nm/index.html

Be happy to get involved in discussing this sort of thing next Monday evening, providing I can stay awake..

Best,
Bob

Permalink Reply by JennyPettit on November 20, 2010 at 4:29pm

I know this is a pretty expansive topic anyway especially once you consider the countless possible CAUSES of chronic pain. But, I wonder if any of the presenters would have something to say about working through the lingering aftermath that sometimes comes with these problems. For instance, (as you probably already saw) I had a VERY high pain day yesterday - what was likely a short but INTENSE flare from stress. Today I still have a good bit of pain, such that if it weren't following the heels of yesterday's mess I'd be upset at how bad it is...but I'm also going through some serious fatigue and brain fog which I attribute to the energy my body used yesterday to get through the worst of the flare. To me, it's working through the fog, fatigue, and lingering pain today that is more confusing than yesterday.

My second question (because I always have more than one:)) is about balancing the multiple things we each have to do - not just activism, but also so as not to neglect activism - while coping with chronic pain. I'm working fulltime (and then some), trying to run a program at my parish, and juggling a full load of activism-related projects while in pain, and finding it hard to know how many resources to give to each...and other people may not be working or as much, but may have children, ill spouses, or parents to care for, more complex households to run, and so on.

I realize neither of these topics may get addressed, which is fine:) I just wanted to bring them up. Thanks!