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.)

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

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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.

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Lupus, SARS and Life in the Real World

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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

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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.



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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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