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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