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Apologies for the absence of the newsletter for the last few months.
I've been busy with my business and also moving house. I'm now settled
in my new house and hope to be back on track!
Please support Butterfly News and the Lupus Site by
visiting our sponsors - http://www.uklupus.co.uk/sponsors.html
This month's article is by Shar - thanks Shar!
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(I'm very sorry to have missed writing for BN lately.
I've been busy with bronchitis and the Big Bad Wolf, while my Mom-in-Law,
whom we caregive, has been ill with diabetes and pneumonia. She's
still hospitalized but improving. Hope nothing's been chewing on
you! shar)
Lupus and the War-Wise Lupie
Life is like lupus - nowdays, more than ever - expect
the unexpected and it won't let you down. This joint is jumping
- global newswires spit out rapid-fire headlines, alerts signal
up or down and back again, everybody's making speeches, arrests
and attacks compete for attention, while Ol' Wolfie goes marching
on.
We lupies are all too familiar with alerts, warnings
and trying to keep our brain-fogged wits about us - it's much like
another day at the doctor's office and, as always, it's still up
to us to see us through. Britain, Europe, Asia and the Middle East
have more experience in dealing with terror attacks than Americans
but most of us haven't gotten much practical guidance for how to
cope with whatever possibilities might or might not arise.
In World War II, neighbors teamed up and communities
worked together for mutual protection. By the 1950's, school kids
were taught to duck under their desks and cover their heads with
books - in 2003 we're advised to stock up on plastic and tape. We've
gone from 'duck and cover' to 'duct and cover' in four decades -
that's some progress. Black and white TV should be back any day
now.
The U.S. Defense Department ordered protective masks
but, hands off, Joe and Jane Citizen. Those 80,000 hooded `escape
masks', at $150 taxpayer dollars each, are just for themselves,
their employees and their visitors. Guess the rest of us should
seal ourselves in plastic, hold our breaths and pray, unless we
live across the street from the Pentagon, which may or may not be
such a lucky break.
Then again, lupies learn to make their own luck. We
have our own terrorists and though the battles are sometimes ferocious,
we haven't surrendered. We like to call ourselves `lupie warriors'
and we are that but we're also diplomats, trying to negotiate a
truce with the wolf. Like his human counterparts, this canny canine
lurks in cells, right under our noses and deep inside our bodies.
Poised for attack or taking a nap, he keeps us primed for reaction.
Lupus wolves and other terrorists feint at attack
but don't always follow through. Still, doing what we can to protect
ourselves will relieve a lot of stress. If we're ready for war,
then we're ready for fire, flood or earthquake too and one step
ahead of whatever life brings. We can do this - we can do whatever
we must.
Bullies love to get a rise out of their targets, to
stir up adrenaline and rouse them into fight or flight. These primal
responses spark before thinking but with time and experience, we
learn to subdue or outfox the wolf here and there, now and then
and teach this dawg some new tricks. We aren't helpless against
this disease because we choose not to be victims. If you'd given
up, you wouldn't be reading this article and if I had - it wouldn't
be written.
We're veterans of foreign wars fought within our own
territories and we can give as good as we get - lupus is not for
sissies. Lupie life teaches us much we might never have learned
if we'd had, say, poodle- itis. Bad perms may be traumatic but they're
temporary, not life threatening (except perhaps to the stylist),
and unlikely to inspire more than a short haircut. Lupus keeps us
on our sentry toes, requiring us to think, evaluate, create and
grow, in order to survive.
We can apply the tactics we use to deal with our already
challenged lives to deal with any other contingency. First, we need
to figure out what supplies we might need or steps we can take for
our own protection. Red Cross and FEMA, the U.S. Federal Emergency
Management Agency, have disaster readiness information useful anywhere,
including one on food and water safety and water purification.
SFC Red Thomas (Ret) Armor Master Gunner has written
his opinion of the difficulties in staging effective biological
attacks against civilians. His article is popular and he's for real
but please, avoid radiation fallout affected food and water. Radiation
fallout causes diseases, including cancers and these health risks
have been known since the U.S. dropped atomic bombs on Hiroshima
and Nagasaki in WWII. Test your knowledge of radiation and educate
yourself on sheltering safety.
If you're thinking of setting up a safe room, you
should know that most experts don't think much of the protection
it would provide. If you do, they recommend it be a cellar/basement
or first floor interior room, sheltered by other interior walls
and either windowless or with the fewest possible windows. In many
homes, that would turn out to be a hallway. All officials insist
that any safe room has limits, especially as the contained oxygen
runs low.
It's always wise to have sufficient medication to
overlap your needs, in case it may be hard to contact your doctor
or chemist/pharmacist. There's a good basic information sheet put
together by the American Society of Health-System Pharmacists and
SafeMedication.com Francesca Lunzer Kritz, writing for The Washington
Post, takes reality a step further. You must register (with no fee
or important personal info) to read her article but it's worth it.
There are pharmaceutical stockpiles in the UK, America
and other countries for public distribution, if needed. Cipro, like
many antibiotics, has some diminished effect and increased dangers,
from overuse. Such medications might not be needed, except perhaps
in isolated incidents and hospitals would administer only specifically
appropriate medications, not what's in our pockets. Potassium Iodide
(KI) will be provided in emergencies and can also be privately bought.
Smallpox inoculations are made of live vaccines, which
are not advised for those of us with lupus and other autoimmune
diseases or those without spleens. Yet another `danged if we do,
danged if we don't' quandary of this lupie life. The smallpox and
flu vaccine information page at The Hospital for Special Surgery
places special emphasis on those with lupus, RA and sister syndromes
and offers facts on the unlikely odds of such an attack happening
or being effective.
The U.S. Center for Disease Control excludes many
physical conditions from vaccination. The vaccine maker has been
legally exempted from liability for any injuries or deaths resulting
from inoculations. This vaccine carries potential for severe side
effects and immunized people are extremely contagious for about
two weeks. Citing inadequate protections and the dangers to them
and their patients, many healthcare workers refuse to participate.
Pressured by healthcare organizations, President Bush
is considering limited compensation for those who become permanently
disabled or die from the vaccine but there is no such program yet.
His compensation cap (unofficially known as `spit in a bucket')
would not provide lifetime security for those unable to work or
widowed. If someone actually were exposed to smallpox, being vaccinated
within 3 days of exposure would prevent or greatly reduce smallpox
symptoms in nearly all people.
With all this to cope with and illness too, we'll
all need a friend or family member and healthcare support we can
rely on. Lupus can be more fun than a barrel of anthrax already
and stress piled on top of stress can add a keen edge to our nerves.
In "Coping with Anxiety," a recent Newsweek article by Claudia Kalb,
she offers ways to smooth our rough edges through relaxing techniques
and self-awareness.
The Mayo Clinic has amassed a collection of reliable
resources called A Guide for Uncertain Times plus 10 Tips for Better
Sleep, which could be a mighty handy guide nowdays. Apples for Health
has an archive of healthy survival articles covering nearly everything
from bio-chemicals to hangnails, just in case.
Children may have the hardest time expressing their
feelings and stress can have pronounced effects on them, especially
if they're coping with lupus or another illness. Talking with Kids
About Tough Issues was established by Children Now and the Kaiser
Family Foundation, to help families communicate. One family, formerly
of Reading, England and now living in target Baghdad must somehow
preserve their diabetic daughter's precious insulin and protect
their immediate environment.
Government medical standards are often `one size fits
all' but small children and animals may be more at risk from contaminants
or of being overlooked in emergencies. It's very important to keep
an eagle eye on their physical and emotional health and don't forget
their favorite toys. Protecting and providing for all animal family
members and livestock is of urgent importance. As with children,
their food, water, bedding and medication needs must be planned
ahead, with expert safety tips covering pocket pets to percherons.
Before deciding anything important, it's always good
to take a deep breath. Breathing exercises can be soothing to the
psyche and ease pain throughout the body at the same time. Many
of us tend to breathe lightly, from the tops of our lungs and we
don't make much good use of those old windbags. Well exercised lungs
deliver oxygenation throughout the body and help support healthy
immune system function.
Picture a square and breathe in through your nose,
following its left side up, counting slowly to 3 or 4. At the square's
top, hold that breath for the 3 to 4 count, then glide down its
right side as you empty your lungs through your mouth, to the same
count. Hold at the square's bottom for the count, then inhale as
you rise back up its left side. Repeating these basic `breathers'
a few times a day, especially when under extra stress, can ease
its impact and help us focus.
Studies have proven that meditation can reduce pain
and stress and sharpen thinking. It needn't be esoteric, psychedelic
or require a change of religion because it's simply about using
mental and physical techniques that enhance our well-being. Whether
we use simple meditation to ease our daily pain or instant calming
to handle emergencies, it takes little time or effort and can be
a real boon in our balancing act on Ol' Wolfie's tightrope.
A mini-state of meditation `light' can be reached
just by sitting absorbed in the gliding swirls of a butterfly, a
kitten at play, a child sleeping - whatever lifts us beyond the
mundane. Drift away in daydreams as you watch the sun gently kiss
the horizon goodnight. Love the moment you're in or create moments
you love and, somehow, life lightens up.
When Uncle Wolfie drafted us warriors, we didn't know
what we were up against, where it could hit or how hard. Like Mae
West, we didn't know if it had a gun in its pocket but, in our scripts,
it wasn't any happier to see us than we were it. Still, we soldier
on, learning as we go, come flare, war or Osama Bin-Hiding.
Seasoned soldiers are the sages of the battlefield,
assessing their advantages, seizing their moments and utilizing
all their strengths. They help greener troopers, teaching them their
own survival tricks. In the lupine wars, we rely on each other,
by sharing information in publications like this, visiting trusted
websites and gathering in support groups. We can find companionship,
support and understanding at `community centers' like The Lupus
Chronicle, Everyday Warriors, Living With Lupus and The Lupus Site.
War, its been said, is hell and lupus isn't exactly
a walk through the park - unless the park's been landmined. Like
many of you, some days I wouldn't recognize my own face on a milk
container, some days the wolf can't rouse me from my foxhole. `Weebles
wobble but they don't fall down ' and even if we do tumble from
Ol' Wolfie's tightrope, we wobble back up to go at life again.
I learn a lot from you and, in my internal dictionary,
`lupie' translates as `thriver'. We are butterflies in wolves' clothing
and no lives are more resilient than the butterflies. They must
completely transform themselves, fight free from the chrysalis and
soar - without power tools, flying lessons or a map of the sky.
Each of us too, is our own creation, the ever evolving product of
our own struggles, striving to reach beyond the clouds. We can do
this - yes, we can.
Copyright 2003 Shar Phoenix
U.S. Defense Department escape masks http://www.washingtonpost.com/ac2/wp-dyn?
pagename=article&node;=&contentId;=A38196-2003Feb20¬Found;=true
Red Cross disaster pages http://www.redcross.org/services/disaster/beprepared/hsas.html
FEMA http://www.fema.gov/rrr/
food and water safety and water purification http://www.fema.gov/library/emfdwtr.shtm
SFC Red Thomas (Ret) Armor Master Gunner http://www.truthorfiction.com/rumors/realdeal.htm
Radiation risks http://www.endocrineweb.com/aacenuclear.html
Test your knowledge of radiation http://www.orau.gov/reacts/test.asp
Sheltering safety http://www.cdc.gov/nceh/radiation/
Safe rooms http://www.washingtonpost.com/ac2/wp-dyn/A225-2003Feb12?
language=printer
American Society of Health-System Pharmacists http://www.ashp.org/
SafeMedication.com http://www.safemedication.com/
Medication and Disaster information sheet http://www.ashp.org/emergency/consumerbulletin.cfm
Francesca Lunzer Kritz for The Washington Post http://www.washingtonpost.com/wp-dyn/articles/A34841-2003Mar3.html
Pharamaceutical Stockpiles UK http://news.bbc.co.uk/2/hi/health/1926780.stm
America http://www.bt.cdc.gov/DocumentsApp/NationalStockpile/NationalStockpil
e.asp
Other Countries http://news.bbc.co.uk/2/hi/europe/1600444.stm
Cipro and antibiotic overuse http://www.cspinet.org/ar/
Potassium Iodide (KI) http://www.fda.gov/cder/drugprepare/KI_Q&A.htm;
Smallpox inoculations and illness http://www.saclupus.org/smallpox.htm
The Hospital for Special Surgery Smallpox page http://rheumatology.hss.edu/phys/specialreports/smallpox.asp
U.S. Center for Disease Control Smallpox exclusion
page http://www.bt.cdc.gov/agent/smallpox/vaccination/contraindications-
public.asp
Vaccine maker exempted from liability http://www.909shot.com/Issues/homelandsecurity.htm
Vaccine side effects http://www.washingtonpost.com/ac2/wp-dyn/A11192-2002Dec4?
languag=printerwashingtonpost.com
Many healthcare workers refuse vaccine http://www.nytimes.com/2003/02/07/health/07SMAL.html
Bush considers compensation http://www.naccho.org/news369.cfm
Vaccine can be given after exposure http://www.hhs.gov/smallpox/AboutVaccine.html
Coping with Anxiety Claudia Kalb for Newsweek http://www.msnbc.com/news/873542.asp?0bl=-0
A Guide for Uncertain Times at Mayo Clinic http://www.mayoclinic.com/invoke.cfm?objectid=118EBF6B-8B14-4DFC-
BC64BFC615E6FBCE
10 Tips for Better Sleep http://www.mayoclinic.com/invoke.cfm?
objectid=F9820A4B-7320-4E1A-98412E8380ADB508
Apples for Health Healthy Survival archive http://applesforhealth.com/survival1.html
Talking with Kids About Tough Issues http://www.talkingwithkids.org/index.htm
Children Now http://www.childrennow.org/
Kaiser Family Foundation http://www.kff.org/
Baghdad family struggles with daughter's diabetes
http://www.timesonline.co.uk/article/0,,3-595143,00.html
children and potential risk http://www.intelihealth.com/IH/ihtIH/WSWPG000/333/341/361371.html
Planning animal protection http://www.redcross.org/services/disaster/beprepared/animalsafety.htm
l
Animal safety tips http://www.hsus.org/ace/457? searchstring=disaster+pet+protection
Breathing exercises http://www.chw.healthinkonline.com/modules/SelfcareWellness/vitWellne
ss.asp?WellID=1780
Simple meditation http://1stholistic.com/Meditation/hol_meditation_simple_meditation.htm
Instant calming http://1stholistic.com/Meditation/hol_meditation_calming_sequence.htm
The Lupus Chronicle http://hometown.aol.com/pubpanda/index.htm
Everyday Warriors http://www.everydaywarriors.com/
Living With Lupus http://groups.yahoo.com/group/LWLupus/
The Lupus Site http://www.uklupus.co.uk/
Weebles http://www.bigredtoybox.com/cgi-bin/toynfo.pl?weebleindex
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