Blogging Our Butterfly
Butterfly migration can be an arduous and chancy trek. For every winged wonder who seeks the sky and survives, countless others fall to earth before their time. Our butterfly was caught up in a internet monsoon but has lived to tell the tale and soar again.
Our stormy season began with our butterfly’s internet migration. Our newsletter was originally called Butterfly News and published by Joanne Forshaw of The Lupus Site
, an outstanding, well known hub of lupus education and support. I was its researcher and writer from the second issue, for 2 years. Running both sites, a business and coping with her lupus kept Joanne much too busy so in May, 2003, she passed our butterfly on to me.
From the first click, our new site was hysterically hyperactive, with twitches, glitches and hissy fitches. I have no tricky techie web-wizard training atall, y’all. I'm just a hardworking healthcare writer and I’d been sending out this lupus news and support newsletter on a butterfly wing and a prayer. I was too busy rounding up research and translating it into ordinary english to focus on hocus-pocus.
Server support wasn’t supportive, so the joint was jumping, without a backup chute. The statistics were wildly inaccurate but I was distracted by more obvious errors. Trying with all my might, I still couldn’t overcome that site’s attachment addiction or its raging OCD.
It wouldn’t always send when I wanted but when it did, it just couldn’t stop. In true obsessive-compulsive tradition, it was never quite sure an issue had gone out so it resent each one, in both HTML and text, just in case. It still sends out the last issue on the first of every month, like a robot run amok. I can’t get in to repair it, dismantle it or strangle it – I’ve tried but I’m no internet ninja. It’ll keep it up until the end of the internet or of the world, whichever comes first.
All along, under cover of site darkness, old and new butterfly lovers were blowing in at galeforce, until our cocoon grew too big for its glitches and crashed under its own weight. During our two years at the first site, we’d grown gradually, from a handful of folks into 2500 members. In our new home, nearly 1300 more people joined in only seven weeks, with nary a hint from the site or its server. Leapin’ lupies, y’all – no wonder our cocoon exploded!
Caught in the eye of a rising storm and all at sea, we were mistaken for sharks and harpooned. Now, our lost site floats like a ghost ship, mired in the web’s own Sargasso Sea, luring innocent lupies into limbo. Our site server did not deign to answer my emails and it also torpedoed my email account so I couldn't alert my readers.
Fortunately, I’d bought a site at AuthorsDen.com
as a backup and it’s come in mighty handy. There, you can find re-edited and currently updated versions of some of my moldy oldies, newer articles and a couple of short stories, with more to come. Unfortunately, that site can’t handle a mail list for a horde as huge as ours.
It seems we’re also too big a group for free or budget priced mail list servers. Most professional servers are geared towards marketers and charge accordingly. Alas, I’m not in this for the cash and I’m fresh out of rich, adoring relatives over 99 years old. The lottery has lost my number and the only fat cat in my life eats kibble on my dime.
With all this web witchery and while working to resurrect our website or reincarnate it elsewhere, I’ve been in a fiery flare, dealing with a family crisis and feuding with flu. I’ve been jumping through more hoops than a pink poodle in a six-ring flea circus and it’s made me mighty itchy. Time was a’wastin’, readers were wondering where their butterfly had flown and I couldn’t leave them without a safety net so I started blogging, with Lupus NewsLog.
Now, the butterfly has landed, with room to spare. Butterfly NewsBytes is now published at our sister site, Everyday Warriors, according to EW’s bimonthly publishing schedule. Our first BNB issue from EW, Lupus and a Wolf-Wise Diet
was published January 1, 2004. That link and those that follow are offered here, at the top left under "Lupus NewsLog's Own Links".
is an exemplary healthcare resource, offering a wealth of information and warm support for a vast range of physical and mental challenges. There are many interesting contributors and columnists at EW, including doctors, nurses and folks a lot like me. You can read articles including Professor Stephen Hawking’s on life with ALS
. It’s a great honor to be associated with such an extraordinary website.
Jillian Leslie is the publisher and webmaster of Everyday Warriors, an accomplished author and experienced editor. She’s also my very dear friend and our devoted ally. Jillian has complex health challenges to cope with yet she is a champion for all of us with our own. She’s written Attitude Boosters For Your Health
with wisdom to help us live life gracefully and with gratitude. On this, as in so many things, she truly is an expert and an ideal role model. I love and admire her dearly.
Lupus NewsLog, Butterfly NewsBytes, Everyday Warriors and AuthorsDen do not require readers to subscribe, proving there really is a lupie heaven. They’re doing the write stuff together, with BNB at EW summarizing the research I unearth, LNL providing details, links plus a whole lot more and AD playing backup. Between them, we’ll keep Ol’ Wolfie dancing on his toes and teach this lupine canine a few new tricks.