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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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Butterfly NewsBytes Lupus News August 2003

(Formerly Butterfly News)

This new site has been full of defects and errors from the first but Yahoo
Support is now helping so these problems should be over. Dealing with my
mom-in-law's death and this site has taken so much time that my article on lupus
and toxins will be published in the September issue. Because of this site’s
problems, I've posted articles at http://www.authorsden.com/sharphoenix for your
convenience. There are more "Websites Worth Watching" there, too. I really
appreciate your supportive and humorous messages after my fall last month –
thank you, I’m doing better now. This issue of Butterfly NewsBytes is dedicated
to you, because this work is all about you and you make it all worthwhile.

In this Issue:
Self-Advocacy With a Kick-Wolf Attitude
Websites Worth Watching


Self-Advocacy With a Kick-Wolf Attitude

Lupus is creative, multi-faceted, industrious and resourceful, just as we must
be, to hold our own and stay ahead of this artful dodger. We lupies can be
pretty enterprising ourselves, with our own hardwon, handcrafted survival
skills. We’re studying our symptoms, doing our own research and making carefully
considered decisions as to what’s best for us. That’s self-advocacy – standing
up for our own lives.

We need allies and mentors, because shared knowledge broadens our education and
deepens our understanding. When we, our doctors and nurses communicate clearly
and work in partnership, every aspect of our treatment is enhanced. To learn
lupus from the inside out, they need our input every bit as much as we need
theirs. No matter how well they may know our bodies, they’re only visiting –
we’ve got to live here, even if the roof caves in.

Some doctors understand we’re partners in this process and worthy of respect.
Others encourage us to be passive patients. They’d rather interpret our symptoms
and direct our treatment without a peep from us. When we try to take on an
active role, they’re apt to respond with condescension, disdain or even anger.
We shouldn’t scuttle meekly back into our shells, repeating the age-old mantra,
"the doctor knows best." Arrogance is their problem – lupus is ours and retreat
gets us nowhere.

If experts look down their noses at us, we should remind them that we aren’t
crashtest dummies. We have the right to be treated with respect and compassion.
Medical professionals may often be disguised as godlike figures but they’re
still human. Trying to walk on water will only give them two earfuls of wet,
just like anybody else. A doctor not godly but good, will be enough of an angel
to discuss all aspects of our treatment, in advance and throughout the process.

With rights come responsibilities, on both sides. Our obligations are as
imperative as our doctors’ and nurses’ – they can’t do a thing without us. Long
ago, a lupie wrote, "My doctor never tells me anything. I guess if God wants me
to know, he’ll tell my doctor to tell me." She’d better pray that doctor’s not
an atheist. If we believe we’re endowed with free will and seeking spirits, then
maybe we should consider exercising them, in honor of the gifts and the giver.

At the onset of any treatment, while still right side up, fully dressed and on
equal footing, we can question new doctors. We should inquire about their
backgrounds in, knowledge of and experience with our illness. Ask if they’ve
been trained and certified in treatment of chronic pain. In discussing these
points, we’ll learn if they’re up to date on current research and treatments.
Doctors routinely interview prospective patients; it's in our own best interests
to make it mutual.

If we have lupus, we’ve already figured out that this is not a perfect world.
Medical records can be incorrect or lost, medical mistakes sometimes happen and
reasonable people can remember events very differently. To be sure, we can keep
our own records. Right after every medical appointment or procedure, we can
enter important information while it’s fresh in our minds. With Ol’ Wolfie
underfoot, life is tricky enough, without increasing the element of chance.

Keeping a notebook or journal can fine-tune our medical treatment and our own
understanding of our lupus. We can list our symptoms including type, location,
duration and times of pain. When symptoms surge, we can note our local weather
conditions including temperature, humidity and pollen count. Writing down our
questions or suggestions, then going over them with our doctors, can
individualize our treatment even more.

We should record all our blood tests, who drew them, where, when and why, with
the results. Track every injection, what it’s for and any reactions. It’s
important to record all x-rays, including dental, bone scans and MRIs. We should
list our allergies, diets and any restrictions. We should include all
prescription and non-prescription medications, vitamins and homeopathics we use.
Many medications, foods, herbs and supplements can cause dangerous or
potentially deadly effects when used together. That makes this information
critical.

Our doctors should let us read our records, add our notes and amend any errors
we find. In America, they must, by law. They should give us complete copies and
update their records and ours, at office visits. They must give us all
information on our medications before prescribing them – the good, the bad and
the iffy. We must know exact dosages and number of doses prescribed before
filling the prescriptions, then read labels and count pills. Request the drug
package insert, read it and save it too.

Finding the best local chemist/pharmacist is as necessary as locating a good
doctor. Whether physicians or chemists, good ones will explain all about our
medications. They’ll relate their effects and side effects, their interactions
with our diets and drug or food allergies or other medicines. We must always be
told of any potential alcohol, herb, supplement or homeopathic interactions and
if any of our medications are sun-sensitive, since that can stimulate our lupus.

Our doctors' and pharmacists' names, phone numbers and addresses can be kept in
a specially labeled portable notebook. We can add a description of our
condition, with all related information. If it’s kept in a labeled, see-through,
waterproof pouch and slipped in our purse, briefcase or pocket, we’ll be
prepared in any medical situation. Medical alert bracelets or medallions, with
pertinent information inscribed can be very valuable in an emergency.

There is considerable evidence connecting lupus to heredity and many of us have
relatives with lupus or other autoimmune diseases. Smart doctors want to know
this. It isn’t always possible to track family history but if it’s there, it’s
another link in the chain we knit to tie the wolf down. Even without such
background, our own research might connect some of the dots. However,
international studies prove genetics are still less influential than
environmental factors.

Here, at BNB, we’re digging through the data and learning how our lupus reacts
to our habitat. We’re learning how our air and water quality, our medications,
diets, household products and so much more, can hurt or help our health. Most
researchers agree environmental factors pack a bigger wallop than genetics in
autoimmune diseases, cancer and a host of illnesses. It’s time humanity cleaned
up its act, instead of sweeping it under a carpet of landfills.

Dr. Graham Hughes is the head of the St. Thomas Lupus Trust.
http://www.lupus.org.uk/home.html in England. In the digest of Lupus: Your First
100 Questions http://www.lupus.org.uk/FAQ.html Dr Hughes describes childhood
food allergies, severe growing pains and recurring teenage migraines as signs of
lupus. If we’ve had any of these experiences, they should be detailed in our
notebooks or journals.

It could be a plus to hire a doctor affiliated with a major medical center, if
it and the physician have good reputations and clean records. The oversight and
peer pressure may provide motivation to keep up with advances. Any doctor can
claim to be a "specialist" but some certificates come with weekend resort
seminars so ask questions and check them out. A wall of pretty paper doesn’t
necessarily mean a doctor is well trained and properly certified. Remember the
Wizard of Oz!

We can create interactive medical relationships, as equal participants. When we
advocate for proper medical care, the results can change our lives, positively
and permanently. Those who survive best are those who are willing to be active
rather than passive. It’s important to remember that:

1) Many of us lead long, productive lives, many years after the onset of lupus.

2) When we focus on what we CAN do, rather than what we can't, we discover new
options, recreate old ones in new ways and expand our panorama of possibilities.

3) In the company of friends who share our challenges and by our encouragement
of each other, we are nurtured and grow stronger in spirit.

4) We need not be overcome by physical challenge; yes, we have lupus but IT does
not have us!

Websites Worth Watching

* For a wonderfully comfy learning experience, drop into The Lupie Bin, a true
labor of love by Julie, a very dedicated and dear lupie. Visiting this site is
like dropping in on an old friend and catching up on family news. Among TLB’s
many and varied pages, you’ll find the "What’s New With Lupus" pages, a page in
Spanish, with links and loads of lupie stories to read. You can bookmark The
Lupie Bin or add it to your Favorites file, to keep up with all Julie’s updates
and additions. http://members.aol.com/lupiebin/index.htm

* Our friend, Barry, has created a site that is informative, surprising and
moving. Barry’s lupus began in childhood and he invites us to follow his complex
journey into adulthood. As a lifelong lupie, I find his odyssey to be
straight-forward and often jolting, with no punches pulled. He’s utilized his
adventures with the wolf wisely and Barry’s Lupus Site is almost as
multi-faceted as the man himself. This is a very interesting and absorbing
website, well worth a thorough exploration and a great site to save and share.
http://www.barryd.com/

* LUpus Patients Understanding & Support is an exceptional research resource,
with information on lupus and related syndromes. Rosalind, the webmaster and
spirit behind this site, has organized encyclopedic documentation, with most
contributed by doctors and professors. Because of this site’s long affiliation
with the St. Thomas Hospital Lupus Unit, much of their research is published
here. The message board forums include, Diagnosis, Symptoms, Medication and
Therapy, Emotional/Psychological and a Teens with Lupus board, for kids and
their families..This is an essential site, well worth saving.
http://www.infotech.demon.co.uk/

Shar Phoenix

Shar_bnb@...


Butterfly NewsBytes and its content are copyright ©Shar Phoenix. The information
contained in Butterfly News Bytes is not intended as a substitute for medical
diagnosis and treatment.



Butterfly News was originally founded by Joanne Forshaw, publisher of The Lupus
Site, an internet hub of lupus education and support.





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Dear Friends,

Welcome - I'm so very glad you've come. Butterfly NewsBytes June 2003, is a
Special Issue: "Lupus, SARS and Life in the Real World". I'll soon have past and
current articles archived onsite, for your convenience.

Butterfly NewsBytes was known as Butterfly News for 2 years. Then I was this
newsletter's scribe, now I am its scribe and publisher. Those of us who live on
the lupus frontlines have the right and the ability to make an important
difference in this world. Working together, we've got a better chance to slip a
muzzle on this wolf. Your comments and ideas will always be appreciated and will
be sure to influence my work.

From time to time, as news breaks between monthly issues, I'll post Lupus News
Alerts. Because this is a newsletter, there is no onsite member posting yet.
Features including onsite polls will be offered soon. Feel free to click on my
name onsite and read my Yahoo profile. You may also email me at
shar_bnb@... and I'll be happy to reply.

Thank you very much for your interest.

Your lupie scribe,

Shar Phoenix

shar_bnb@...

"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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Butterfly NewsBytes – Lupus News - June 2003

Lupus News with Shar Phoenix. I've lived with SLE for over 50 years, researching
lupus and its autoimmune sister syndromes for over 30 years. Butterfly NewsBytes
offers research-based information, identifying disease stimulants in our
environment, our healthcare and in our daily lives. The more clearly we know
what works for or against us, the better we can protect ourselves. (Formerly
Butterfly News.)

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
* * * * * * *

Special Issue: Lupus, SARS and Life in the Real World

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
* * * * * * *

Butterfly wishes a Happy Father’s Day to all lupie fathers, everywhere. This
issue of Butterfly NewsBytes is dedicated to our caregivers, or carers, who lend
us their support and their strengths. Whether they’re our family, friends, or
friendly professionals, they are invaluable and their TLC is appreciated. With a
dip of the wings, Butterfly salutes lupie dads and all our caring carers, for
their contributions to our lives and to our community.



This dedication and this article were inspired, in good portion, by our friends,
Bob, Val, Nancy, Chris, Debby, Sheila and Yvonne and their experiences, living
La Vida Lupus.

All article links were live at time of publication.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Lupus, SARS and Life in the Real World

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

In this issue:

Reality Bytes

Lupus and SARS

SARS and Steroids

SARS - Dishing the Dirt

Our Health, in Dirty Hands

Nurses, Lupus, SARS and Work

What Goes Around, Comes Around

We’re Crafting Courage from Calamity

Neighbors in Our Online Community

* * * * * * * * * * * * * * * * * * * * * * * * * *

Reality Bytes

Nowdays, it seems as if the whole world has full-blown lupus and is reeling on
its axis in fiery flare. As the news marches on, our planet is besieged by
terrorism, ravaged by war and cornered by SARS. It’s sniped at by Yellow Fever,
Monkeypox, West Nile Virus, Foot and Mouth and Mad Cow Disease. Tornados,
earthquakes, volcanic eruptions and landslides batter the earth. With one
hyper-adjective alarm after another, Mother Nature must be nursing the mother of
all migraines and pining for a little tender, loving care.

Sometimes, reality really bites. Cycles of natural disasters and communicable
illnesses are part of life on planet earth and we can’t move into bungalows on
Mars. Living atop Mount Everest probably isn’t a workable strategy, so we better
learn to protect ourselves, by separating fact from fiction. Don’t let mass
media decide what’s news to you. Look for balance in the tales you hear and
read. If the plot is overwrought, it may be tinged with myth. For a sharp view,
read Canadian writer, J.J. Johnson.

Hippocrates said, "A wise man ought to realize that health is his most valuable
possession and learn how to treat his illnesses by his own judgement". In these
articles, we’re investigating just what gets Ol’ Wolfie’s goat and learning how
to avoid becoming sacrificial lambs. This month, we’re digging up the dirty
lowdown on the connections between unhealthy habits, communicable disease and
flare.

Lupus and SARS

Each of us is uniquely vulnerable to contagion, since our individual resistance
varies, depending on a slew of factors. Still, we’re all alike in this - when
our paranoid, overprotective wolf attacks "invaders", he’s always got to go
through us. Lupus and SARS have a particular kinship too, since both produce
extreme immune response with severe inflammation. Naturally, this kinship is a
concern for those of us who might be exposed to SARS.

It’s too soon for reliable data on the possible combined effects of SARS and
lupus or other AI diseases. The Chinese People's Daily Online reports that lupus
is increasing there, with 75 known people affected per 100,000. With lupus
already on the scene, SARS can seem even scarier and speculation without
information is cold comfort. Teaming this new bogeyman with the Big Bad Wolf may
read like a grim fairytale but this scare story’s ending is still being written.

Emory University in Atlanta, Georgia developed the first rapid lab test for
identifying SARS patients. Hong Kong microbiologists have developed a fast,
simple, non-invasive diagnostic test. Diagnostics are the first step and
effective treatment must be a speedy second. Doctors and researchers have thrown
everything at SARS but until recently, nothing made a dent. Now, as researchers
work on a vaccine in the US and China, some say there’s another ray of hope,
with a familiar, if ironic twist.

SARS and Steroids

It seems steroids, the drugs we love to hate, help to protect against SARS.
Doctors in Hong Kong say they’ve successfully used corticosteroids to suppress
the SARS immune response. When steroid use stopped, SARS flared again and when
steroids were resumed, it subsided. Some doctors believe steroids could halt
early-onset SARS. Could steroids, properly used, provide some protection against
getting SARS in the first place? No one knows, since steroids haven’t been
tested for that purpose.

However, some of those patients have since relapsed and other doctors are
skeptical about this treatment, because of those relapses and the increased risk
of infection. If you’re using or considering using these drugs it’s very
important to discuss this issue in depth with your doctor, Steroids are
extremely potent and potentially dangerous so they’re not right for everyone.
They must be individually fine-tuned, carefully managed and never overused.

SARS - Dishing the Dirt

The origin of the SARS virus has been traced to food animals and their handlers,
in Guangdong Province, China. Guangdong, once known as Canton, has an ancient
history and a long tradition of particularly exotic Southern Cantonese cuisine.
People come from across Asia and around the world to dine on all sorts of wild
and domestic animals, including endangered species and those often bred as pets.

Thousands of captive animals and those who caged, slaughtered and served them up
for dinner lived together, in crowded and unsanitary conditions. International
health and animal protection organizations protested against these markets for
years but business continued as usual, until SARS got cooking. Now, the Chinese
government has emptied the animal markets, stopped deliveries at entry ports and
is scrubbing the country clean.

The Southern Cantonese menu has changed and China has ordered an immediate
alteration in public hygiene habits. There are large fines for spitting,
improper garbage disposal and pet droppings left in public streets. Old habits
die hard but the impact of SARS may be a fatal blow. SARS has taken a heavy toll
and the people of China are paying a heavy price. Now, they’re rearranging their
daily lives, adapting their social behavior and more people are working from
home.

SARS is cutting a wide swath through Canada. Taiwan has suffered incredible
losses and is still in jeopardy. In Singapore, mandatory quarantine has been
instituted. ASEAN, the Association of Southeast Asian Nations, at
ASEAN-Disease-Surveillance.Net, tracks SARS in all its member countries. ASEAN
provides a map of SARS locations, above their list of daily updates.



Countries, governments, industry, business and folks like us are turning this
beautiful planet into one gigantic waste dump. Until humanity learns to clean up
after itself, there will always be another health crisis. We’ll deal better with
life’s crises, if we’re well read, well prepared and open-minded. Indonesian
journalist, Meidyatama Suryodiningrat, sums up the world’s reaction to pandemics
and shares his thoughtful insight.

Our Health, in Dirty Hands

Doctors and, especially nurses, have been hard hit by SARS, partly because it
flourished in their work environment. Hospitals are bacterial breeding grounds
and infection is a constant problem. In the US alone, 103,00 people died last
year from infections transmitted in hospitals. The Chicago Tribune investigated
5,810 American hospitals and discovered that, of those 103,000 deaths, nearly
75% didn’t have to happen.

This study found hospitals, in general, had unclean facilities, equipment and
instruments. Nowdays, most hospitals are understaffed and their employees are
overworked, making matters worse for everyone. Basic hygiene suffers, as
contamination is passed between patients, visitors and hospital staff. The
Chicago Tribune’s "Unhealthy Hospitals" report is in three parts, covering
infection, poor hygiene and lax procedures.

SARS caught hospitals off-guard and countries are tightening their healthcare
procedures. In the US, these protective tactics apply to SARS patients and those
who directly attend to their needs. Concerned for their safety, the Canadian
Union of Public Employees is calling for a public inquiry and new, broader
safety rules. Since we can count on at least one contagion scare every year or
so, it seems preventive measures should be standard procedure for all hospitals,
all healthcare workers and all patients.

Nurses, Lupus, SARS and Work

Nurses have a sharply high rate of lupus and their unhealthy work environment
could well be the pivotal factor. After all, they must tend to contagious and
infectious patients and handle wound dressings, other contaminated materials and
medications. In The Honolulu Star-Bulletin, Pat Kelly, RN, describes the down
and dirty details of a dangerous and underpaid public service career. She also
mentions the high lupus risk associated with nursing and points out some
work-related lupus factors.

Healthcare workers who have lupus or close contact with someone who does, are
caught between the wolf and the workplace. They must be very careful about what
comes home with them. Their co-workers with other flare prone AI diseases share
this difficult position. If you’re vulnerable to contagion and contamination at
work, please discuss the situation with your doctor, bosses and co-workers, so
they might help you minimize your risk.

These men and women possess a unique perspective on lupus, because of their
combined professional and personal experience. Many share their experiences and
expertise in online forums, private emails or by hosting lupus awareness
websites. The Nurses’ Learning Network offers a continuing education course
based on the book, "Lupus: What’s It All About", cowritten by Claudia Pagano, an
R.N., who has lupus. Nurses can find support at websites like Nurse Zone,
NurseWeek and NursingHands. Any of us can follow nursing news, for inside
information.

As the Chicago Tribune investigation proved, not only nurses are at risk. Dirty,
diseased hospitals aren’t just in the US either – they’re everywhere. This is a
global problem and a very touchy subject. Hospitals are notorious for this
problem within medical circles but nobody is legally required to tell patients
of the risk. In cases of injury or worse, it’s rarely entered into medical or
death reports, except as "nosocomial infection", which is, roughly, Latin for
"hospital acquired infection" or "Gotcha!"

In her article, R.N. Pat Kelly also makes a strong case for installing automated
bathrooms in hospitals and medical facilities. Sensor equipped toilet lids and
water faucets, with hot air hand dryers, would certainly reduce the transfer of
contamination. The automated toilet lids would be an important improvement,
since toilets are sitting cesspools, ready to explode.

When toilets are flushed with open lids, they spew bacteria all over ceilings,
walls, towels, appliances and anybody in the room - further, if the door is
open. Then, the dirty flusher carries bacteria through the house, to the dinner
table and out into the world. Public bathrooms are the dirtiest of all, with
most visitors bypassing the sink and soap. Women are more likely to wash than
men, yet men are usually more ‘hands-on’.

If we’re not asthmatic or hyper-allergic to dust, we needn’t live under purely
pristine conditions –dust bunnies don’t kill, unless they run in herds. We do
need to be reasonably safe from the kind of contamination that, at the least,
can aggravate our lupus and provoke flare. We and our families and home
healthcare assistants or carers may benefit from reading, "Guideline for hand
hygiene in health-care settings".

What Goes Around, Comes Around

In this contagious climate, the best safety measures are those based on good old
common sense, which isn’t nearly contagious enough. For instance, studies show
that most people (not just medicos) rarely wash their hands, even after a trip
to the toilet. Handwashing for many others is at best a quick rinse. Don’t you
ever wonder what that hand you’re shaking was doing before it touched you? The
possibilities are endless and many are none too pretty nor one bit healthy.

Long ago, a fine physician told me there’s only one way anyone with defective
immunity could stay reasonably well. Basically, the idea is to avoid
handshakers, huggers, kissers, coughers, snifflers, sneezers, pickers, spitters,
children, crowds, churches, concert halls, public bathrooms, transportation
terminals, buses, taxis, trains, planes, restaurants and, most of all,
hospitals. Yeah, we can all do that - or buy biohazard suits. Won’t we be
stylish at the mall? We’d surely be ‘dressed for success’, at least against
communicable disease.

Nowdays, that advice could apply to everybody but, SARS aside, it ain’t
necessarily so. Yes, a lot of us with very intense SLE may live like Rapunzel
but most of us can be a lot more flexible. Being rooted at home or having
limited roaming range does create certain protections but we’re still
susceptible to whatever wafts in with family and caregivers. There is no such
thing as perfect protection, not even in fairytales.

Millions of lupies do brave the big, bad, bacterial world every day and live to
tell about it. No one can tell us what would affect the average lupie or how,
because there is no average lupie. The best thing we can do is minimize our
exposure to things that seem to rile our wolf. For starters, we can try to avoid
close contact with people who are ill from or have been exposed to communicable
illnesses and those with deadly hygiene.

SARS isn’t the only environmental hazard on this polluted planet, so, we need to
be aware of just what’s out there and what we can do to muzzle our wolf. With
our hyper-responsive immune systems, we may have resistance to some things but
we might instead be hit harder. It’s a toss-up but you know how Ol’ Wolfie loves
to juggle. As we study, we’re learning what conspires against us and how to foil
those fiendish flare factors.

Even without biohazard suits, we can combat germs when we venture out. We can
carry a small bottle of alcohol hand rub and a packet of tissues, for quick
scrubs when needed. Alcohol based hand sanitizers are said to be safe for
children, under adult supervision, since the alcohol evaporates quickly. If we
keep bottled water, a roll of paper towels, a roll of toilet paper and a change
of clothing in our cars, we’re ready to clean up after germs, spills and
monsoon-like hot flashes.

We can carry these supplies to the hospital with us, for touch-ups, as needed.
We can type and print out a medical advisory chart, in large text, to tape next
to our hospital beds, as precaution against medical errors. At the top, should
be your name, room number, the specific condition for which you’re being
treated, your primary illness and any syndromes or related conditions. Include
all your medications, with specific instructions for each, plus a list of your
food, drug and other allergies and sensitivities.

Facemasks are so popular lately, they’ve become an accidental fashion item.
However, most of us know little about them and sellers can take advantage of our
fears. There’s also debate over which masks provide protection from SARS and how
much. If you’re in a highly contagious situation, read up on facemasks and make
a well-informed decision.

This brief and factual article may get you prowling your neighborhood and
digging through your cupboards, to see what’s lurking there. If you want a truly
healthy home, check out CHEC’s HealtheHouse for an array of household
environmental factors and guidance on how to clean up safely. This comprehensive
resource was established to protect children’s health but the guidelines apply
as well to folks with defective immunity.

Hippocrates was right, y’all – we’ve got to get hip. We need to value our own
judgement, do our own research and sift hysteria from honest evaluation. Here I
go again – take nothing you read as Holy Writ, including my work – that’s why I
supply all these hotlinks. Investigate, debate and evaluate for yourself, to
learn just what’s best for you. All the experts in the world fail in this most
crucial qualification – they don’t live your life, in your body.

This is a beautiful but ugly, wondrous yet frightening, mind numbing and
enlightening ride we’re on and there are no seatbelts – that’s life, on Ol’
Wolfie’s rollercoaster. If it swerves out of control, we can blame it on the
wolf at the switch or grab for the handle. Everyday, we’re trying to get a
handle on lupus and put the brakes to this wild ride. We can’t allow ourselves
to be carried away by fear – we’d only be doing Wolfie’s job for him.

Ol’ Wolfie is allergic to stress – it makes him break out in lupies, all over.
We bite down on stress with breakfast and tuck it into bed at night. Just when
we’re sure we’ve already reached our quota, life, lupus and the daily news come
back with a truckload of trash. When reaction overtakes reality, we can refresh
our coping abilities with advice from the authors of Coping With Stress in Hard
Times and Ten Tips (+1) on Coping with Stress and Anxiety.

We’re Crafting Courage from Calamity

Sociologist and author, Dr. Lee Clarke, has studied how people respond to
natural and manmade afflictions and disasters. His acute observations have
fortified his faith in humanity, in our resilience, our compassion and our
courage. We live in perilous times and we can’t control acts of God or acts of
man but we can determine our response. America’s former Poet Laureate, Maya
Angelou, has written:

"You may encounter many defeats but you must not be defeated. In fact, it may be
necessary to encounter the defeats, so you can know who you are, what you can
rise from, how you can still come out of it. One isn’t necessarily born with
courage but one is born with potential. Without courage, we cannot practice any
other virtue with consistency. We can’t be kind, true, merciful, generous or
honest."

I’ve exchanged emails with hundreds of you, both lupies and those who love us. I
know how courageous you are – you make me proud to be a lupie. You prove the
truth in Clarke’s and Angelou’s philosophy, as you craft courage from calamity,
time after time. Once, we were alone but, now, we’re coming together as a
community and in our activism, we are changing the course of lupus history.

Autoimmune diseases run helter-skelter through my family, on every side and I’ve
been both giver and receiver of care. For the last few years, my husband, his
brother and I have taken care of their mom. As a child, my mother-in-law was
orphaned and traumatized by war. She lived with diabetes and fearful, angry
inner voices she could never quiet. As I was putting this issue together, she
finally found her peace. She never knew calm but courage was at her core.

Mahatma Mohandas Gandhi said, "You must be the change you wish to see in the
world", so, I do this work and we all do our bit, in our way. There is much more
to us than lupus and the more we reach for, the more we stretch our grasp. Don’t
let SARS, lupus or life define you or confine your spirit – we can all be the
change we wish to see. Take care, my friends, take heart and take courage.

Neighbors in Our Online Community

The Lupus Chronicle is a lupie owned and run publication, featuring articles by
lupie authors, personal lupie stories, lupie spouse’s stories, Laugh Lines and
Life Lines, with current lupus news. My own story article was once featured at
TLC, and I’m pretty darn picky - Linda and her lupie crew put out a true gem.

It’s hard to find remedies that work for us, since lupus and other AI illnesses
are so individualized. At RemedyFind, folks like us rate medications,
supplements, online support and more. Brett began researching his CFS and then
kindly created RemedyFind for the rest of us. Check out RF’s member rated Top 10
Remedies for Lupus, with info based on site ratings.

For a great read, see the fact sheets, Lupus: A Patient Care Guide for Nurses
and Other Health Professionals. This series was prepared by National Institute
of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and National
Institutes of Health (NIH) in Bethesda, Maryland, USA. This material is
definitely recommended reading for us and our carers or caregivers. You can
print out the fact sheets and share them with your doctors and medical support,
to refine your treatment.



* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Butterfly NewsBytes and its content are owned, published by and copyrighted to
Shar Phoenix.

Articles are available for reprint upon request.



Butterfly News was originally founded by Joanne Forshaw, publisher of The Lupus
Site, an internet hub of lupus education and support.



The information contained in Butterfly News Bytes is not intended as a
substitute for medical diagnosis and treatment.



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[Non-text portions of this message have been removed]

Dear Friends,

This is the sight of one finger, typing.

July's butterfly is flying slow, due to a sneaky dog and a slippy
lupie. Lucky Lady was behind me, then she was under me and then I was
in mid-air. Fortunately, the floor caught me and bounced me back on
her, my cushy canine trampoline. The lucky dog was unhurt, the lucky
lupie is recovering and will be a single index finger typist for a
while.  but - none of my spun glass bones are broken – nary a one.

Truly, wonders never cease. It's no wonder, "Appreciation", is my
mantra.

Please friends, don't try this trick at home – your canine companion
might not be quite so cushiony.

Despite these `dog days', BNB July 2003 issue, "Lupus, Toxins and Our
Body Burden", will soar in soon. This month's issue delves further
into the complex relationships between lupus, its autoimmune sister
syndromes and environmental factors.

This is a loony lupie miracle and public safety announcement, brought
to you live, from Butterfly NewsBytes.

Thank you for your understanding, patience and support. May your
wolves be forever muzzled, never to nibble on you again.

Your limping, lupie scribe,
Shar

Shar Phoenix
shar_bnb@...
Butterfly NewsBytes