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In this issue -
* Self Advocacy for Optimum Healthcare
* In the news
* Feedback
I am pleased to welcome Shar Phoenix, who will be
writing articles (on lupus and related health issues) for Butterfly
News. I run the site alone, as well as running my own business,
so I am very grateful to Shar for stepping in to help.
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Self Advocacy for Optimum Healthcare
If those of us who are living with severe and/or chronic
pain are ever to find relief, we are well advised to do our own
research and actively advocate for that relief. Far too often, as
patients, we are encouraged to submissively allow medical professionals
to interpret symptomology and direct treatment with little or no
actual patient input. Frequently, when we do attempt to take on
a more active role, we are met with condescension, disdain or even
anger at our "presumptuousness", causing us to scuttle meekly back
into our psychological shells, repeating the age-old mantra, "the
doctor knows best".
It's beneficial to remember that, however well disguised
as authoritative, even godlike figures, medical professionals are
human, just like us and they only visit the body; the patient inhabits
it. Therefore, we have the inherent right to be treated with respect
and to have our concerns dealt with responsibly and effectively.
If we wish for our doctors and nurses to treat our pain and ultimately
our survival seriously, we must learn to utilize the strength that
allows us to challenge our pain in daily life as a tool to challenge
our own submission and assert our right to accurate diagnosis, treatment
and proper pain relief.
American Pain Society President-elect, Christine Miaskowski,
Ph.D., RN, has stated, "Patients are going to have to demand better
care. Unrelieved pain has negative effects. Just like they need
an antibiotic to treat infection, they need analgesics to treat
their pain." The American Pain Society's informative website is
at: http://www.ampainsoc.org/
This, then, is a clearly stated and expert imperative
to advocate for ourselves in order to obtain appropriate care. As
we learn to assert ourselves positively and establish a thoughtful
progression of self-advocacy, we can develop personal power every
bit as formidable as the pain that once ruled our lives. For many
of us, the desire to self-advocate is already awakened but lacking
clear information on how to proceed, we pause in place. This article
details a system of self-advocacy that has proven effective for
many of us and dramatically increased our options.
At the onset of any treatment, preferably while still
fully dressed and therefore on far more equal footing, it can be
informative to ask our physicians about their backgrounds in, knowledge
of and personal feelings about the condition they will be treating
in us. Discussing these fine points, our treatment options and inquiring
into their opinions of each will enable us to discover if they are
up to date on current research and treatment and open to new theories
in medical research. Doctors routinely "interview" prospective patients;
it's in our best interests to make it mutual.
It's empowering for each of us to keep a journal or
diary listing our symptoms including type, location, duration and
times of pain. Listing weather conditions including temperature,
humidity and pollen count at times of exacerbation of symptoms can
help to fine tune the progression of treatment. It's equally imperative
to keep a separate journalistic record of our full medical history,
allergies, dietary needs and/or restrictions, all our prescription
and non-prescription medications, vitamins and any homeopathic we
may use. Many medications, foods and supplements can cause dangerous,
even potentially deadly effects when used together, making such
information crucial to our treatment.
Since most of those with severe and/or chronic pain
and particularly those of us with Lupus have contributing medical
conditions, we often have more than one or two specialists. It's
wise to list each with their names, addresses, phone numbers, specialties,
the condition for which they are treating us, method of treatment
and medicines prescribed plus any related medical instructions.
Our doctors should be fully informed, provide us with all information
on our medications before prescribing them and discuss all aspects
of our treatment both in advance and during process. After every
doctor's appointment, we can enter current information while it
is still fresh in our minds. We should be sure that each of our
physicians has this information and utilizes it in our treatment
while consulting with us and each other in council. This will allow
us to develop a policy of teamwork between ourselves and our health
care providers, for optimum effect. Even finding the best possible
local pharmacist/chemist is crucial; a pharmacist who is informed
on medicines, their effects, side-effects, interactions with our
allergies or other medicines we may be taking, food/beverage/homeopathic
interactions and is willing to share this knowledge while protecting
our privacy, can be invaluable.
If we also carry our doctors' and our pharmacists'
names, phone numbers and addresses along with a description of our
condition listing our medications and allergies with us in a specially
labeled little booklet, such as a pocket-sized address book, we'll
have that pertinent information on hand for any unexpected medical
situations, including emergencies. A medical alert bracelet or medallion,
with pertinent information inscribed can also be invaluable in any
emergency.
The more we educate ourselves concerning this illness
we live with, the more effectively we can advocate on our own behalf.
"The Lupus Book" by Daniel Wallace is acclaimed by many as the best
source of Lupus and related syndrome content in book form. The 1995
or 2000 editions can be found at many local libraries or purchased
through the Lupus Foundation of America. They sell many revelvant
books, including the revised and expanded 2000 edition of "The Lupus
Book" which is $16.95. Their full selection of books, listed under
"Publications" ranges from $3.95 to $19.95 American. Proceeds support
selected research projects related to the causes, treatments, prevention
and cure of Lupus, with links at:: http://www.lupus.org/lupus/index.html
Through our diligent research and determined self-advocacy,
we can work to create positively interactive doctor/patient relationships,
thus equalizing and empowering ourselves. As we act to do so, we
should find that our questions and comments will be responded to
with full professional consideration. If any medical professional
refuses to participate in such an interactive relationship it's
best to look further for one who will. Those who survive best are
those who are willing to be active rather than passive. We have
the inherent right and the responsibility to live our lives as fully
as possible. We can all be advocates for our own health care and
the potential results can change our lives, positively and permanently.
Researched, written and copyrighted by Shar Phoenix
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In the News
It's Lupus Awareness Week here in the UK, so look
out for articles and information appearing in local and national
press.
A recent new feature on the site is the 'Community
Noticeboard', where anyone can post information on Lupus fundraising
and awareness events. If you're planning an event, just email the
details (who, when, where) to - [email protected]
Lupus Patients Should Be Evaluated For Migraine -
http://www.uklupus.co.uk/news67.html
Safety of Popular Arthritis Supplements Questioned
- http://www.uklupus.co.uk/news68.html
Three Medical Journals Publish Papers On La Jolla
Pharmaceutical's Lupus Drug Candidate - http://www.uklupus.co.uk/news69.html
"Tolerance Technology" To Treat Lupus -
http://www.uklupus.co.uk/news66.html
You can now use the recommend form on the site to
recommend the Lupus Site to friends. http://www.uklupus.co.uk
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All articles in Butterfly News are copyright Joanne
Forshaw, and must not be reprinted in any way, shape or form without
written permission. "Self Advocacy for Optimum Healthcare" is copyright
Shar Phoenix. No responsibility can be taken for anything that happens
as a result of any advice/information contained herein.
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