Chronic Pain Lifestyle

Friend, Lord Matt, Leads the Charge...

...to help find a super web designer for our new look.  Lord Matt, responding to my request that he contact his readership about my request for a bold, unique, easy to use format for our site posted the following:

Quick! Grab Colin's Money.

Colin Sullivan of Chronic Pain Lifestyle is offering cold hard cash to entice his fellow bloggers to help him redesign his blog.

Cash!

Yes, spendy. Old Mammon. Green, foldy, bread... the stuff that buys beer.

Money.

But it's not "free money" you need to provide value for the money.

You need to create a typepad skin. I've never done it but I'm sure Wordpress, NucleusCMS or Blogger themes would copy well.

Chronic Pain Lifestyle seeks a Web Site or Blog Site designer. We use TypePad as a host, We seek a bold, unique design that provides easy to use functionality. Chronic Pain Lifestyle desires a “multi-chapter” format, tabbed for example, with tabs providing a front page, for new posts; as second tab for news; a third tab that links directly to our chosen forum; a fourth tab for links, which will be sub-divided by topic, and a final tab for use by readers as a “classified/advertisement” page for use by readers.

Additionally, and most importantly, the site must be easy to navigate, with an embedded site search function.
Chronic Pain Lifestyle, Open Request...

So why are you still here?

Get your skillful selves over to his blog and grab his cash.

    I've asked several other blogger friends to do the same.  All designers who submit a design for consideration will have their work, and website prominently displayed.  At a date in the near future, an open, public vote will be called for by the decision makers at Chronic Pain Lifestyle.  This body will be responsible for selecting the winning design based in large part on the results of the public vote.

     If you don't already read, The Fantastic World of Lord Matt, please click on over there, http://lordmatt.co.uk/ .  You'll love it!  God bless, Colin

OPEN REQUEST FOR BLOG DESIGN OR WEB PAGE DESIGN

Blog Site Designer Needed

     Chronic Pain Lifestyle seeks a Web Site or Blog Site designer.  We use TypePad as a host,  We seek a bold, unique design that provides easy to use functionality.  Chronic Pain Lifestyle desires a “multi-chapter” format, tabbed for example, with tabs providing a front page, for new posts; as second tab for news;  a third tab that links directly to our chosen forum; a fourth tab for links, which will be sub-divided by topic, and a final tab for use by readers as a “classified/advertisement” page for use by readers.

     Additionally, and most importantly, the site must be easy to navigate, with an embedded site search function.

     We are paying customers.  This request for proposal should be initiated with a visit to the existing site, http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/ , and an email to [email protected] .

Please Welcome Kathy

     Kathryn's first article on Chronic Pain Lifestyle is posted below poorly copied from an email.  Once more, for the record, I am Techno-tyro.

      I'm sorry that first Anne, then Clayton, then Wanda, and now Kathryn, or as she prefers Kathy suffer the indignity of my bumbling.

      I've always believed that the best way to accomplish something is to just do it.  That learning how to do "it" well would simply follow as a natural outcome. Well...

     Please enjoy the privilege I've had privately reading what Kathy had to say about herself, and her battle with LAM.  If you haven't contacted your Senators and Congressional Representatives, I urge you to do so; If not just for Kathy, but for all who are afflicted and sadly those not yet diagnosed. 

     I'll set-up Kathy's access tonight so that she can post as she sees fit.  God bless us all, Colin

A Site that Deserves Its Own Post

     From the comment board, please go to: http://ihavearachnoiditis.com/ , which is among a handful for blogs that provide useful, timely info.  The writing is good, and although I don't know the author, notice the professionalism of the site.

      Those questions you've been meaning to ask; the answers are here.  The site is nicely cross referenced.  Put this site on your must read list.  Colin

Your Health and Your Vote

Hi,

The site below was in Sunday's paper. Just FYI,

Thanks to Wanda

YOUR HEALTH & YOUR VOTE

Health care is a priority for many Americans, but most don't know where their Congressional candidates stand on issues such as stem-cell research. Research!America, a nonpartisan organization dedicated to health education, can help. Its new free voters' guide shows how candidates answered basic questions about health and medical research. Visit: www.yourcandidatesyourhealth.org  to learn more.

Colin

New Sites, check them out!

     Xenos Design, http://www.jarred.brentp.net/blog/ written by by a new web friend, Jarred, is a new site, a bit technical but easily read by anyone  with an interest in the we world.  As I said, it's new. so there isn't a lot of depth yet.  As a blogger, I hope to develop a closer relationship with Jarred, who I think can be an enormous help to me and my site. Xenos is bookmarked!  Jarred also has fought battles with pain, which as far as I'm concerned, makes him a welcome member our our community.  Jarred, glad we met.

     Amy Raymond writes, Cheapskatin' LA-hip handouts-free.  Too bad I live in NYC.  If you spend time on the left coast, Amy's blog is the hippest brain-fryin' travel guide you'll ever read.  Locals, prepare for the scales to drop from your eyes.  For the rest of us, make do with Amy's technique-Hey, it might work in Milwaukee! http://lafreebie.blogspot.com/

     A team of editors,  and writer, combine to feature my childhood stomping grounds, Bostonist, http://www.bostonist.com/ makes me homesick every time I click the link.  They even have a guy named Colin Rego on the writing staff.  One of the first things you'll notice when you hit this link are hot links to other cities: Paris, Philly, Sao Paolo, San Francisco, Seattle, Shanghai, Toronto, and DC.  Keep checking, I'm sure there's more.

     BW Jones is a scientist who chooses as his subjects things often not visible to the naked eye.  Brimming with color, microscopic images contrasted with photos from ordinary life.  Jonesblog can be found at: http://prometheus.med.utah.edu/~bwjones/  You've never seen anything like it.

     Last for today, Adam Rubenstein writes, Colorado Life Science Deal Flow. at http://rnaventures.blogspot.com/ .  This is an esoteric, unique site.  The topic is fund cutting edge scientific technologies.  I recommend it because it will open your eyes to the frontier of bio-pharmacology ( what are the newest drugs, and what do they do?)  combined with the element of money ( who pays for all that stuff?)  This site is interesting to me because I'm able to keep an eye on private investing, which ideas are hot, and what are the newest early stage technologies.

     Chronic pain lifestyle has been quite for the last week, which has been a bad pain week for me while Anne's been away.  I spent a lot of time digging through sites that I think You'll find interesting.  I've identified 22 of them.  I've explained 4 in this article.  By the time I've built a hot list, you probably notice that most of the big name blogs aren't there.  I spent my time uncovering sites that are off the beaten track.  There are many more in the slush pile than 22.

     One last word, one of my kids wants to write an article about what it's like with a disabled parent.  Expect that in about a week.  God bless, Colin

Back Be Better: a site I was lucky to find.

     Dave Gershner, lives in Texas, and publishes a site Backbebetter, http://backbebetter.blogspot.com/ and as I mention in the title I was lucky to find it.  Dave, who actually has expertise in ergonomics and design, writes prolifically and in a straightforward fashion about actions we can take today to make our lives better.

     It's a practical, attractive and readable site.  I'd never have known about about Dave or his site if he hadn't found our site first, and dropped a comment introducing his new blog. After reading it, I immediately recommended the site on our sidebar, where I think it probably got lost in that sloppy. but highly valued recommended websites.

     First, try-out his site.  Second, drop him a note; he responds quickly and really knows his stuff. On that point, I've got to do the same because I need a good desk chair that won't deplete the kids' educational funds. Third, I'm going to write something about every site I recommend--they wouldn't be up there if I didn't find value in all of them.

     You should understand that most blogs are a labor of love.  Most blogs are narrowly targeted-Anne and I both suffer from chronic pain, so we write, hoping that other sufferers will read our stuff.  If you've read this far, please drop an email to me or Anne, or post a comment.  If you leave your email address, , we'll be in touch with you within a week to describe how the simple act of writing has not only eased our pain, but also changed our lives.  Dave would probably say the same thing.

     Give Dave a read: http://backbebetter.blogspot.com/ .  It's time well spent. God bless, Colin

Gag order issued by COFWA

     Well, I suppose it had to happen, but "the Circle of Friends..." has asked that I not post anymore on the topic of the God given gift of physical love, or any other "sensitive" topic.

      I can understand that. What I have a problem with is the heavy-handed editorial arbitriness of determining which normal human functions are okay for your eyes.

     At the age of 47, my life of physical love with my wife, among many other things, is a deep concern of mine.  I need to talk about it, and I hoped to find a like minded group of Arachnoiditis suffiers who felt the same way.  I don't post my symptoms, meds, disabilities, because I don't fell I need to qualify on those subjects.  I'll only say that I'm not bed-ridden like some poor souls, but I have had a career, and family life severely impacted by my permanent diability.

     Interesting timing: I just posted two spititual pieces (sorry, no sex), which I think they also object to.  Well, since I take medical advice from physicians, and not laymen, and I don't own a kitten. It seems that the COFWA ought to call itself "The Circle of Friends with Arachnoiditis who think like us"

      That's the good part about having your own website.  You can write what you want.

IMPORTANT SUSCRIPTION INFO

     I thought I'd drop  a note filling the men in on my progress so far concerning "Men on the Way to a Better Life", a private, password protected, forum where we can share freely and openly about how this awful disease has changed our sex lives. I've put this together because of the overwhelming email response I've  got , after posting 3 messages entilted SEX AND LOVE.  I've tried to answer every email. If I haven't plase resend.

    The emails are still swamping my inbox, but subscriptions are to my website are slower in coming.  Please hit:  http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/ .

     I think people believe there's some cost--there isn't ;

1. My site is confusing--it is, but people can simply sign-up for email updates, which is towards the bottom of the page on the left side.
2. The email subscription doesn't require any info except an email address, and a "name", which can be anything, so that anonymity is protected.

     I'm going to push the agenda out a week; I've had many verbal okays, I'm still getting about 50 hits and 20 emails per day. I know a couple of urologists who will donate their time and expertise to help men understand how arachnoiditis, our meds, and our combatting this illness affect our sexual capabilities and desires.

     THIS IS NOT TO SAY THAT FEMALE MEMBERS OF THE GROUP WOULDN'T BENEFIT FROM THE SAME FORUM.  I strongly suggest that someone else pick-up the ball on that initiative.

     I think I've mentioned this before, but it bears repeating.  After the posting of 3 articles of Sex and love, hundreds of email replies more than half were from women.  The generosity and openness of spousal replies was extremely moving, and I wish I could share these "letters" with you; but I did promise anonymity.

     The idea of a men's forum, "Men on the Way to a Better Life", should really be entitled "Men w/ Arachnoiditis on the Way to a Better Sex Life."  Nearly every male who responded was insistent on a private forum promoting a more open discussion.  What I've felt, and it's sad, is that all respondents deeply love their wives or partners, but feel inadequate, and guilty. This is a pervasive group sentiment.  Not surprisingly, most of the male respondents see sex as a unique form of intimacy; most females did not .

     Well, I'll keep writing, although it's hard to keep up, I'll also respond to every email.  Please make it easier by subscribing to "Chronic Paim Lifesyle": http://jackbauerdeclassified.typepad.com/chronic_pain_lifestyle/ .   Guys, if you want to get involved in private, open discussions please sign-up on the site. God Bless you all, Colin