Dear friends,
Today, I'm bringing you up to date on our website's progress, our new
contributors and offering you a chance to check out your lupie scribe, up close
and personal.
Our Yahoo site is in a ferocious SLE flare, it seems. I'm sorry it's caused so
much trouble. I'm working on it and also in my inbox, answering your emails. I'm
working on the next issue, too. I'm sorry to be so tail-dragging slow but I will
reply to every single email.
Many of your letters require me to do research and reply in detail, so I can
give you accurate and individual information. I'm very glad to do it and I want
to do my very best by y'all, so, please be patient with me.
Ginnie, I did reply to you, Mary and Emilee but I get an "undeliverable"
message, saying your addy is invalid. Carrie, it says the same about you. I read
your emails and I know you're for real. Please write again. If you have another
addy, that one might work better.
A lot of you want us to have the message board up so I'm working on that, too.
Laura, a lovely lupie friend, has generously offered to lend us her internet
expertise. Still, it's a big job and we could always use another caring, capable
friend or two, to pitch in.
Soon, we'll have our message board and polls. Then comes the blog. Meanwhile,
there are several articles at our other site and more coming in. Since it's a
writers' site, they name the individual sites after the writers there but this
is also for all of us. http://www.authorsden.com/sharphoenix
Sadly, that message board hasn't worked either - foiled again - but I'm working
on both sites so please, check back. You can write me there or here and I will,
slowly but surely, reply.
Chris, a dear friend and thriving lupie, will share her knowledge in nutrition,
exercise and healthy habits, in our BNB newsletter and on the blog. I've known
Chris for years and she's contributed to our newsie before, with wonderful
recipes and tasty tips. She'll do us all a lot of good - we're very lucky to
have her along.
My updated lupie life story has just gone up at Everyday Warriors. It's more
detailed, to answer some of your questions and I hope it's helpful to you. EW
has many pages of medically based articles and stories from doctors, nurses,
researchers and survivors, including Professor Stephen W. Hawking.
Our stories are our most personal and important credential in our lupus and
healthcare community. Mine starts out being about lupus, brings you along on my
life's journey and comes, full circle, back to you.
http://www.everydaywarriors.com/adults/shar_intro.htm
Because I had to meet a deadline, with all this and Yahoo too, my lupie teenage
years got fairly short shrift. We'll be investigating childhood and teenage
lupus too, here and on the blog, with contributions from folks who've shared
those experiences.
I hope you're doing well today. Please, be gentle with yourselves; this life is
plenty challenging without lupus - with lupus, we all need extra rest and
relaxation. One of the most important things we can do to cope with lupus is to
nurture ourselves and allow our bodies to restore themselves, every day.
We lupies are not aerodynamically sound, which I proved last month,
bouncing across my cushy canine trampoline. We can't afford to play kickball
with the wolf - guess who always gets to be the ball? So, be good to yourself
and kind to others - you'll feel better and you'll be making an investment in
your own healthier, happier future.
Take Care, My Friends, Take Heart and Take Courage!
Your loyal lupie scribe,
Shar Phoenix
“We are, each of us, angels with one wing and we can only fly by embracing one
another." Luciano de Crescenzo
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