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Welcome to the March issue of Butterfly News. Our membership is
rapidly growing, and if you know anyone who would like to receive
this free newsletter, just direct them to - http://www.uklupus.co.uk/luplist.html
The website has grown so much, it's now having to
be hosted on two different servers! If you haven't been to the message
boards recently, take a wander over there. We have a new look and
lots of great new features. One thing hasn't changed though - the
wonderful people who frequent to boards, including our moderators
who do a wonderful job. We also have a chat room up and running
again. There are two scheduled chats each day, but the chat room
is always open, so you can drop in at anytime of the day. http://www.uklupus.co.uk/chat.html
Thanks again go to Shar for this month's article.
Eleanor Roosevelt
once said, "No one can take advantage of us without our consent".
Giving or denying informed consent and making our own treatment
decisions can be acts of supreme self-advocacy since we have the
highest investment in the outcome. An experienced, progressive and
receptive Rheumatologist, along with other solidly skilled professionals
can be a great boon but, good or bad, our doctors are, at best,
our working partners in this venture; they really can't do a thing
without us.
With any medical or alternative care, we have the
right and responsibility to be fully informed and to choose our
treatment options, in an evolving program tailored to our specific
needs and circumstances. If we choose to research and try appropriate
supplements or alternatives, our doctors should work with us, in
an effort to reduce or eliminate medications. You might visit the
website of Dr. Andrew Weil to read his opinions on lupus, at http://www.drweil.com/drw/app/cda/drw_cda.php?
command=TodayQA&pt;=Question&questionId;=4063 and at http://www.drweil.com/drw/app/cda/drw_cda.php?
command=healthConditionDetail&articleType;=Condition&pt;=Condition&artic;
leId=23 for his advice on FM.
As we blaze our trails, we'd best learn the terrain
and keep our skepticism finely tuned. Nobody has all the answers
and this journey has it's own versions of poison ivy and tiger pits.
We learn what's best for us by studying research and research based
information, documenting our symptoms and taking a proactive stance
towards our challenges. Ultimately, it comes down to doing what
we can to minimize those factors that may stimulate or escalate
our symptoms and contribute to flare. The American media obsession
with an anorexically slim and youthful appearance has spread worldwide
and often our ambition teeter precariously between being thin and
being healthy. The swelling caused by steroid use and sometimes
simply by A.I. illness itself isn't susceptible to dubious "tone
and slim" charms. Lupus, for example, can cause us to retain fluids
and swell up like a Macy's Parade balloon, without the aid of chocolate
eclairs. Like Lupus, Fibromyalgia alters the appearance completely
independent of medications or diet and is reported to add at least
an average of 30 lbs. to a person's natural weight. That extra weight
can transform our mirror image and alter our sense of self. Our
desire to look fit and capable can tempt us to try products or treatments
that may make us ill and lead to flare.
For example, if we lose any weight on the "Hollywood
Diet" it's most likely the result of frantic dashes to the bathroom,
since the product's main active ingredient is just a cheap but powerful
laxative. Surprise, surprise, and that's the gentlest of the genre.
Most diet pills, potions and elixirs work simply because they're
stimulant based, causing "appetite amnesia" which can quickly lead
to serious nutritional deprivation. They also cause us to drink
far less fluid and decrease urination, which can quickly harm the
kidneys, bladder and cause severe systemic damage.
The primary component in some 200 weight loss and
muscle tone/energy enhancing products including Metabolife, Body
Solutions, Ripped Fuel and Ultimate Orange, is Ephedrine, an amphetamine-like
stimulant also known as Ephedra, Chinese Ephedra, Ma Huang and Epitonin.
This herb has caused tremors, hemmorrhagic strokes, cardiac arrest,
hypertension, kidney disease and death.
The U.S. Federal Food and Drug Administration has
linked Ephedra to as many as 1000 reports of complications and at
least 44 deaths. Visit their website at http://www.cfsan.fda.gov/~lrd/advice.html
and their Consumer Advice pages at http://www.cfsan.fda.gov/~lrd/advice.html#dietary
for food and dietary supplement information.
Over the past few years, the deaths of American women
were linked to their use of products like Pondimin or Redux and
Fen-Phen. Fen-Phen is a combination of two prescription drugs, fenfluramine
and phentermine, previously only used separately as appetite suppressants.
Please visit http://www.dietfraud.com/broadsheet.html for the straight
skinny on diet and health fraud.
Non-prescription cold medicines, decongestants and
weight loss products containing PPA (Phenylpropanolamine) were linked
to hemmorhagic stroke and in the U.S., most of these products were
pulled from store shelves last year. Still, whether containing PPA,
Fen-Phen or Ephedra, many of these dangerous drugs are still sold
online, on the black market.
You can investigate http://www.ephedra-legal.com/
for a list of products containing PPA, information on Ephedra and
more. To hone your own opinions, visit the legal websites, Ephedra
Online Information Resource, http://www.ephedra-facts.com/ or http://www.ppa-
ephedra.com/info.htm "Products We Do Not Sell & Why", is a good
read, at http://www.health-pages.com/cgi-local/aff2.pl? SRC=G087T&URL;=service/wedonotsell.html
a page from the Whole Health store at Health.com.
Pesticides and/or other toxic chemicals are commonly
used in agriculture, industry, household products, cosmetics, infants'
and childrens' toys and even in their sleepwear as a preventive
against injuries from fires. The greens at parks, golf courses,
schools, hospitals and other public areas are maintained with applications
of pesticides and chemical fertilizers. According to a report released
by the U.S. Centers for Disease Control and Prevention (CDC) 5,000
American citizens were tested for internal absorption of toxic chemicals
in ordinary use. Multiple toxic chemicals were found within the
bodies of nearly every person tested. These chemicals are used worldwide,
so please visit EcoNet, http://www.igc.org/igc/gateway/en/archive/arch032601.html
then follow the link to Toxic Exposure.org for tips on reducing
your own exposure to these chemicals.
Some contaminants are linked into the food chain long
before we sit down to dish up dinner. The pesticide DDT was banned
in the U.S. in 1973 but is still used in growing grains, fruits
and vegetables exported from some countries to the world's markets
for human and animal consumption, without disclosure. DDT metabolizes
very slowly, remaining in the body's fatty tissues for years. For
more details, see "DDT," http://encarta.msn.com/index/conciseindex/27/0270A000.htm?
z=1 Microsoft® Encarta® Online Encyclopedia 2001. The non-profit
Beyond Pesticides, http://www.beyondpesticides.org/ provides consumer
information on pesticide use and look on the blue toolbar, under
"Info Services" for a listing of safer (for you) and practical pest
control substitutes.
Even ordinary household products may be or over time
might become noxious to those who are sensitive to chemicals. Insecticides,
sunscreens, toothpastes, hair sprays, oven cleaners, sanitizing
aerosols, perfumes, colognes, spray deodorants, feminine hygiene
sprays, air fresheners, incense and scented candles might be irritating.
They might cause or aggravate headaches, itching, rashes, digestive
difficulties, ulcerations or affect breathing. When we must use
such household helpers, it's sensible to use them sparingly and
ventilate with fresh air.
Laundry products that don't completely rinse out of
fabric can contribute to skin problems too. Ordinary white vinegar
or baking soda, properly diluted with water, can be used instead
of many cleaning products. When used instead of window washers,
fabric softeners, in rinsing dishes by hand or in place of store
bought dishwasher rinses, white vinegar will remove soap residues.
This can be especially important when it comes to washing undergarments
and babies' diapers as detergent and fabric softener residue can
trigger or worsen severe diaper rash. The Center for Sustainable
Living at http://www.coin.org/community/home-garden/sust-living/
lists safe alternatives for household use.
The toxic chemicals in new carpeting or left behind
after shampooing are suspect in A.I. illnesses, as are the bonding
agents used in applying any floor coverings. It's important to allow
the house or apartment to air out fully after such applications.
Even new linens and clothing have usually been treated to give them
that nice, bright, crisp appearance so it' wise to wash and rinse
them before letting them touch our skin. "Breathable" clothing fabrics
like cotton or cotton blends allow perspiration and skin oils to
evaporate, making them less irritating than synthetics, especially
in underwear. Next to the skin, white 100% cotton undies are the
least irritating.
Interior and exterior house or furniture paint and
stains, shellacs or resins are known to have adverse affects on
even healthy people. There are less toxic alternatives available
but if we still must use them, it's wise to wear safety masks and
apply them outdoors, then quickly shower off all possible residue.
We needn't wear hair shirts (they'd itch), take vows
of consumer chastity and deprive ourselves of life's conveniences
and lovely little pleasures. That'd make it too tough to even open
our eyes every morning, let alone fortify ourselves for another
battle of wits with Ol' Wolfie and his cronies. We now have a stronger
sense of life's impermanence and unpredictability; we also have
a deeper appreciation of it's value. We are unique, not only in
our illness but in ourselves. Our illnesses change us, yes, but
we can tweak the redesign and come to cherish our lives as original
works of art.
**********************************
Trying to describe our pain in ways that our doctors
can readily understand and accurately assess can be frustrating.
Fortunately, there are charts we can print, fill out and take with
us to our medical appointments. Pain.com at
http://www.pain.com/assessment_forms.cfm offers several
forms to choose from.
*********************************
(Due to regrettable glitches in my computer and,
alas, in me, I've inadvertently lost some of your emails over the
last months, as they arrived or soon after. If you've written me
and never received a reply, please write me again at my new addy,
[email protected] so I'll be able to reply. Your questions and
comments are always greatly appreciated. As philosopher and author
Luciano de Crescenzo, wrote, "We are each of us one winged angels
and can only fly by embracing one another." It's a pleasure to soar
with you!)
Shar Phoenix ©2002
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