Have You Experienced a Lifetime Cap on Your Health Insurance?

The Scleroderma Foundation is interested in speaking with scleroderma patients who currently have lifetime cap insurance policies and/or who have experienced a cap limiting their access to healthcare.

Individuals who fit the description(s) above are asked to contact Sondria Berman toll free at 1-800-722-4673 ext. 48 or by email at sberman@scleroderma.org to discuss a possible media opportunity.

 All candidates should contact the Foundation on or before Tuesday, January 12th.

 Thank You!

The initial announcement was made here on our August 12th blog post Unlocking Another Door to Opportunity  and you can read more about it as you scroll down to the “Second Item”.  For those of you who just want to cut to the chase, here is the link to the survey that also explains what its all about it:  Purdue Study .  

He has mentioned that the surveys will be going on until October or so – it only takes a few minutes and he has promised to be in touch with the results that we will be posting here.

Hoping you are all having a great week so far…

First item

When I received three emails within an hour from readers letting me know they had trouble posting comments to our last blog entry, I felt awful.  I’m certain every one of us have experienced the dreaded “How are you?” questions only to have the person asking you walk right by without slowing down to hear your response.  That question has become so rote that we don’t even recognize it as a question anymore – just something to exercise our gums and give ourselves a distraction from whatever is going on in our heads.  That seems to be a little of what was happening with the blog comment situation and we are happy to say it has been fixed – you no longer have to ‘register’ in order to comment.  Sorry for the trouble, folks. 

When we here at MLWT ask you for your comments, recommendations, suggestions and participation - we want you to know that we are re-committing ourselves to slowing down and listening, not just asking an empty question like “What do you think?”.  If there are any of you who did not have a chance to get through due to our blog set-up, please consider re-visiting and commenting on what you read here.  Your input is vital in creating this burgeoning community.

I would also like to mention that I am very pleased to have so many out-of-staters congratulate us on what we’re building here for Oregon.  We are targeting SW Washington also due to the proximity, but there are others who live in Idaho, Washington, and non-PNW states all over this country who have emailed us with encouragement.  Interestingly enough, very few Oregonians have made themselves known – seems to go right along with the general consensus of the big lupus organizations and research institutions’ impressions of  ‘Why bother with Oregon?’, right?

We want to bother. We see Oregonians as independent, conservative or private with ‘advertising’ their health status to strangers and fully capable of working through whatever they need to with the networks/support they currently have.  What we are simply offering you here at MLWT is an opportunity to build on whatever you already have going on - be it a stronger network, more strategies, relevant educational opportunities, becoming a voice in our local advocacy/research efforts and to help represent Oregonians with lupus as living with it well and on our terms.  If you aren’t ready to get on the MLWT bandwagon through commenting, workshops this Fall or through the bulletin board discussions, that’s okay - because we feel strongly that we will offer something to you at some point and, if we aren’t, we believe you’ll let us know.                                                        ________________________________________________________________________

Second Item

Perhaps, instead,  you might be interested in a recent research opportunity out of Purdue University  studying health information sharing (through blogs, for example) among people with chronic conditions.  MLWT was contacted by Justin Guild, graduate research assistant working with Dr. Jeong-Nam Kim,  asking us to offer all of you the link to their online survey  that takes abut 5-7 minutes to complete.  In his email, Justin writes:

“The findings of this study could lead to better management capacities of
chronic diseases as well as an increase in funding for research related to
online communities.”

I have taken the survey and it covers similar points that we have been covering here on chronic illness advocacy, blogging/narrating our health stories and educating others about living with illness.  It went quickly and made me actually stop and think about how my internet time chatting with others contributes to my own health management.

We strongly encourage you to take the survey and maybe even discover new questions for yourselves about the role blogs or the internet in general play in how you live with lupus. Be sure to let us know what you think of it when you’re done – our door is always open now!