Rheumatic

question for everyone -
today is a rather 'flar-y' day - very cold and damp. sitting here
on a padded chair in front of the computer, it feels like the bones
in my backside are bruised and very very sore.... so, which blinking
bone is this flaring on me this time??? this is a first - never had
it right in the bone like this - it's worse on my left side, a very
sharp constant pain.... (even though i'm sitting evenly with both
feet on the ground). has anybody every experienced this?
thanks guys,
love, karen

Hi all,
the same thing happened to me in september when i had to go off
vioxx - what a reality check (and a real bummer) - i'm still trying
to find a viable alternative....
love,
karen

While there are several problems that may cause shoulder pain and
restricted movement, common signs of a frozen shoulder include the
following:
Significant shoulder pain
Shoulder stiffness
Limited range of motion
Onset of symptoms without injury
Certain motions are more limited than others
Difficulty sleeping
Do these problems sound familiar to you? Rest assured - you are not
alone.
You can do something about this today. The Ultimate Frozen Shoulder
Therapy Guide will show you how to free up your shoulder joint and
prevent your motion loss from actually worsening.
http://frozenshouldersr.blogspot.com/#

OMG - my husband is sleeping in the next room and i had to actually
put my hand over my mouth to stifle the guffaws coming out of it -
it is so funny, and my eyes are welling up... it brings back
memories from a year ago when i had an electric wheel chair for 7
weeks in the rehab hospital.... i don't know how many walls i went
into trying to learn how to manoever the darned thing.....
thanks for the comic relief - there's nothing better for the soul
than a good laugh!
love,
karen

There is a Dovonex solution for the scalp. I've used that and Olux foam and its
helped a bit.
Good luck!
Beth
Patty B <pattybacon@...
Howdy everyone!
I'm in need of some help/advice from some of you who've experienced P
on the scalp recently. I haven't had to worry much about P except
for a little on my ankles and elbows for years but this winter it's
beginning to get the best of me -- especially this crust that's
forming on my scalp. I haven't kept up with any new developments and
have been so skeptical of any topicals in the past. Is there really
anything worth trying nowadays?
Many thanks,
Patty in the cool Pineywoods of East Texas

Howdy everyone!
I'm in need of some help/advice from some of you who've experienced P
on the scalp recently. I haven't had to worry much about P except
for a little on my ankles and elbows for years but this winter it's
beginning to get the best of me -- especially this crust that's
forming on my scalp. I haven't kept up with any new developments and
have been so skeptical of any topicals in the past. Is there really
anything worth trying nowadays?
Many thanks,
Patty in the cool Pineywoods of East Texas
P.S. Sent this earlier with misspelled title.

sorry Kathy,
am having computer troubles...I'll try again.
Hi Fran,
That is helpful. I know they say that fibro doesn't involve
inflammation but I once got a prednisone shot into a trigger point
and it did help. There is so much they don't know yet...I think
fibro may turn out to be an autoimmune illness too....and why are pa
and fibro SOOO closely linked?
My rheum is clueless about some things...cosot can't affect theback
ribs ?? glad I have this group.
Marti

Hi Cat,
Isn't it amazing how it all adds up? and how so many of us have
similar troubles?
OK...the thyroid can be affected by the autoimmune illnesses too. It
is called thyroiditis.(itis is a suf....just kidding :) ) the
controvery arises when they test for antibodies for this...as Mayo
did for me...many docs now say if you have the antibodies then you
need to be treated with a lower TSH reading. I do have the antibodies
and my TSH reading falls within the new standards....but my docs here
don't even believe in testing for them...they just go by a strict TSH
higher reading. There are some good websites to read on this . I'll
try to remember what they are.
hhmmm.....maybe you can make the connection to your particular
thyroid problem...I'm not sure on that. I know pa can cause all sorts
of overgrowths though. Many of my bones have overgrown and fused.
hope this helps some,
Marti

Hi, I was told by my doctor that when on antibiotics all bacteria, good and
bad, are 'killed off.' When the course of antibiotics is finished then eating
plain yogurt and taking probiotics to replenish all the 'good' bacteria that
were killed of is very important in maintaining good health.
If this is the case, then taking probiotics at the same time as the antibiotic
would seem to me to be counterproductive. For this reason I make sure that I
take my minocin at a minimum of 2 hours away from the probiotic.
HTH
Carol_DM
AP jun98
2000 remission/control

Hi Cat,
LOL! I didn't think a thing of it. It was good info. I know "itis"
but just from so much experience, unfortunately. I guess I was
wondering what it was that gets inflamed and you answered me....the
CT. I have learned so much from this group and it helps keep me sane
when my docs don't get it. You are a great addition with your medical
knowledge and will be a help to many people :)
Best,
Marti

Dear Sue, I'm glad you still get a smile out of this story. I just re-read
what I wrote, and it made me smile as well. Mainly because I remember how
hard I was laughing the whole time. I must have looked just like a total
mad woman!!!! lol. Sometimes I think things seem to happen to me more than
other people. Believe me I have stories....I'll save them for a time when
everyone is down again and I'll try and brighten the day. Thanks for making
me smile. Love, Fran

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOLUME- 4 ISSUE- 17
November 30, 2004
PSORIATIC ARTHRITIS MEDICAL NEWS
BEE VENOM MAY SOOTHE RHEUMATOID ARTHRITIS
Blocks genes that cause tissue swelling, study says
By Janice Billingsley - HealthDay Reporter
(HealthDayNews) -- While bee venom has been touted for many years as an
analgesic for arthritis sufferers, a new study has discovered just how it might
work to make people feel better.
In animal studies conducted last year, doctors in South Korea found that
melittin, the principal peptide in bee venom, blocks the expression of
inflammatory genes that can cause painful tissue swelling in rheumatoid
arthritis
patients.
"The potency of melittin in the inhibition of the inflammatory response may
be of great benefit in degenerative and inflammatory diseases such as
rheumatoid arthritis," the authors wrote in their study, which appears in the
November issue of Arthritis and Rheumatism.
For the study, researchers first studied rats treated to induce inflammatory
arthritis. For rats with advanced rheumatoid arthritis, low doses of bee
venom dramatically reduced tissue swelling as well as abnormal bony growth
caused by the disease.
Next, researchers tested the anti-inflammatory effects of melittin on human
synovial cells of arthritis patients. Synovial cells are those that line the
joints, and which are vulnerable to inflammation among arthritis sufferers.
They found the melittin blocked the expression of the genes that cause the
inflammation and pain suffered by arthritis patients. The melittin worked in a
similar way to a class of drugs called cox-2 inhibitors, which are now used
to treat rheumatoid arthritis and reduce inflammation, the scientists wrote.
The melittin also reduced the amount of nitric oxide in the synovial cells,
the researchers found. This has potential palliative effects as well, because
there is evidence that tissues affected by inflammatory arthritis produce
large amounts of nitric oxide.
"Although further study is needed for determination of an effective dose,
our data show that the anti-arthritic effects of bee venom are related to its
anti-inflammatory effects," the authors wrote.
"This is an interesting study. The authors are claiming that bee venom
actually causes a reduction in inflammatory response, which is counterintuitive,
because a bee sting causes severe local inflammation, with swelling and edema,"
said Raymond Dingledine, chairman of the department of pharmacology at
Atlanta's Emory School of Medicine.
Dingledine said it has been thought that the reason bee venom, which has
been a folk medicine for arthritis for a long time, might have a soothing effect
on arthritis is because when stung by a bee, the body produces cortisone to
fight the local inflammation, and it was thought that the increase in
cortisone could be easing the swelling of other tissue affected by arthritis.
But he said there haven't been controlled clinical trials to determine
whether there really is a benefit, for the very practical reason that bee stings
"hurt like crazy" and a study would have to create a placebo that would be
equally painful.
Also, he added, there are other medications for arthritis (like nonsteroidal
anti-inflammatory drugs), as well as surgery, exercise and diet.
"However, there are people for whom standard treatments don't work, and this
is a new idea for how bee venom might have anti-inflammatory advantages," he
said.
Rheumatoid arthritis, a chronic disease and potentially debilitating disease
mainly characterized by inflammation of the lining of the joints, affects
approximately 2.1 million people in the United States, primarily women,
according to the Arthritis Foundation.
SOURCES: Raymond Dingledine, Ph.D., chairman, Department of Pharmacology,
Emory School of Medicine, Atlanta; November 2004 Arthritis & Rheumatism
Copyright © 2004 ScoutNews LLC. All rights reserved.
***********************************************************
DRUG COMBO BETTER FOR RHEUMATOID ARTHRITIS
Two medications better than one, researchers say
The Associated Press
LONDON - Combining a new drug with the standard initial treatment for
rheumatoid arthritis seems to work better than using either medicine alone,
research indicates.
About 1 percent of people have rheumatoid arthritis, a crippling disease in
which the immune system goes awry and attacks the joints.
For nearly two decades, the standard drug against the disease has been
methotrexate, originally developed to fight cancer. But two out of three
patients
donât respond well to it.
Enbrel targets inflammation-causing protein
The newer drug, Enbrel, belongs to a class of medicines that target an
inflammation-causing protein called tumor necrosis factor, or TNF. Such drugs
have
helped people who have not benefited from methotrexate.
The new study, outlined this week in The Lancet medical journal,
investigated for the first time whether giving both drugs from the onset would
be better
than using one alone. Conducted by experts at the Karolinska Institute in
Stockholm, Sweden, it involved 682 patients who were given either one of the
two drugs or both.
A year after treatment began, 35 percent of the patients in the combination
group were in remission, compared with 13 percent of those on methotrexate
alone and 16 percent of those on Enbrel alone.
There was no further deterioration of joints in 80 percent of patients on
combination treatment, compared with 68 percent on methotrexate and 57 percent
on Enbrel alone.
Dr. Armin Schnabel of the Rheumatology and Immunology Clinic in Bad Wildbad,
Germany, said that although the results show the combination treatment is
better, therapy for rheumatoid arthritis remains imperfect.
âEfficacy can be enhanced by combining (Enbrel) and methotrexate from the
beginning, but even the combination leaves a sizable number of patients with
active inflammation,â said Schnabel, who was not connected with the research.
The Lancet study involved people who had suffered from the disease for a
long time. Perhaps aggressive combination treatment early in the course of the
disease could make a big difference in switching off the destruction caused by
inflammation, he said. The study was funded by Wyeth, the company that makes
Enbrel.
© 2004 The Associated Press. All rights reserved.
*****************************************************************
REMICADE IN EUROPE
Europe Recommends Approval of Remicade (Infliximab) for Treatment of
Psoriatic Arthritis
(My thanks once again to our roving reporter from the United Kingdom -
Michael Szczygiel.)
KENILWORTH, NJ -- August 2, 2004 -- Schering-Plough Corporation announced
that the Committee for Medicinal Products for Human Use (CHMP) of the European
Agency for the Evaluation of Medicinal Products (EMEA) has issued a positive
opinion recommending approval of expanded labeling for Remicade(r)
(infliximab), in combination with methotrexate, for treatment of active and
progressive
psoriatic arthritis (PsA) in patients who have responded inadequately to
disease modifying anti- rheumatic drugs (DMARDs). Psoriatic arthritis is a
chronic autoimmune inflammatory condition involving the joints and the skin.
The positive opinion for Remicade as a treatment for PsA is primarily based
on data from IMPACT (Infliximab Multinational Psoriatic Arthritis Controlled
Trial)(1), a randomized, double-blind, placebo-controlled study involving 104
patients with active PsA who had failed at least one DMARD and were enrolled
at nine centers in the United States, Canada and Europe. Results
demonstrated the safety and efficacy of Remicade in treating this
debilitating disorder.
In IMPACT, patients given Remicade (5mg/kg) experienced rapid and sustained
improvement in their joints, as measured by the ACR 20, 50 and 70 response
criteria, measurement tools used to assess disease activity and improvement.
Specifically, 34 of the 52 patients (65.4 percent) met the ACR 20 response
criteria -- the primary efficacy parameter -- at week 16, compared to five of
the
52 patients (9.6 percent) in the placebo group. Responses were sustained
through the end of the study (week 50). Results were confirmed in the ACR 50 and
ACR 70 scores among those treated with Remicade: 24 patients
(46.2 percent) met the ACR 50 response at week 16 with 26 patients (53.1
percent) meeting it at week 50; 15 patients (28.8 percent) met the ACR 70
response at week 16, with 19 patients (38.8 percent) meeting it at week 50.
The CHMP recommendation serves as the basis for a European Commission
approval. A Commission approval of the application will result in Marketing
Authorization with unified labeling that will be valid in all EU-Member states,
including the current 15 member states and the 10 new accession countries as
well
as in Iceland and Norway.
The Arthritis Research Campaign estimates 1 in 50 people have psoriasis. Of
these, about 1 in 14 will develop PsA. (2) While PsA can develop at any age,
onset usually occurs in middle age, typically in adults between the ages of 30
and 50. Men and women are affected equally. Symptoms include stiffness,
pain, swelling and tenderness of the joints and surrounding soft tissue,
reduced range of motion, morning stiffness, and tiredness. Other symptoms
include nail changes, including pitting (small indentations in the nail) or
lifting of the nail.
Remicade is a monoclonal antibody that specifically targets and irreversibly
binds to TNF-alpha which has been shown to play a role in RA, CD, AS and
psoriasis, and may also be important in a wide range of other immune- mediated
inflammatory disorders. Remicade is unique among available anti-TNF biologic
therapies. Unlike self-administered therapies that require patients to inject
themselves frequently, Remicade is the only anti-TNF biologic administered
directly under supervision and monitoring of specialized physicians. In RA and
CD patients, Remicade is administered every eight weeks, following a standard
induction regimen that requires treatment at weeks 0, 2 and 6. As a result,
Remicade patients may require as few as six treatments each year. The safety
and efficacy of Remicade have been well established in clinical trials
conducted over the past 10 years and through commercial experience with more
than
500,000 patients treated worldwide.
Remicade is the only biologic indicated for the treatment of both RA and
Crohn's disease (CD), a serious gastrointestinal disorder. In the EU, Remicade
is also approved for the treatment of Ankylosing Spondylitis (AS), a serious
inflammatory disease that leads to stiffening and subsequent fusion of the
spine.
For RA patients, Remicade, in combination with methotrexate, is indicated
for the reduction of signs and symptoms as well as the improvement in physical
function in patients with active disease when the response to disease-
modifying drugs, including methotrexate, has been inadequate, and in patients
with
severe active and progressive disease not previously treated with methotrexate
or other DMARDS. In these patient populations, a reduction in the rate of
the progression of joint damage, as measured by X-ray, has been demonstrated.
In CD patients, Remicade is indicated for the treatment of severe, active
Crohn's disease in patients who have not responded despite a full and adequate
course of therapy with a corticosteroid and an immunosuppressant; or who are
intolerant to or have medical contraindications for such therapies. Remicade
is also indicated for the treatment of fistulizing, active Crohn's disease in
patients who have not responded despite a full and adequate course of therapy
with conventional treatment (including antibiotics, drainage and
immunosuppressive therapy).
In the EU, Remicade is also indicated for treatment of ankylosing
spondylitis in patients who have severe axial symptoms, elevated serological
markers of
inflammatory activity and who have responded inadequately to conventional
therapy.
Important Information Regarding Labeling for Remicade
People with heart failure should not take Remicade. Prior to treatment,
patients should discuss any heart condition with their doctor. Patients should
tell their doctor immediately if they develop new or worsening symptoms of
heart failure (such as shortness of breath or swelling of feet). There are
reports of serious infections associated with Remicade therapy, including
tuberculosis (TB) and sepsis. Some of these infections have been fatal.
Patients
should tell their doctor if they have had recent or past exposure to people
with
TB. Their doctor will evaluate them for TB. If a patient has latent (inactive)
TB, his or her doctor should begin TB treatment before starting Remicade. If
a patient is prone to or has a history of infections, currently has one, or
develops one while taking Remicade, he or she should tell his or her doctor
immediately. Patients should also tell their doctor if they have or have had a
disease that affects the nervous system, or if they experience any numbness,
tingling or
visual disturbances. There are also reports of serious infusion reactions
with hives, difficulty breathing and low blood pressure. In clinical studies,
some people experienced the following common side effects: upper respiratory
infections, headache, nausea, cough, sinusitis or mild reactions to the
infusion such as rash or itchy skin. Please read important
information about Remicade, including full U.S. prescribing information at
_http://www.remicade.com_ (http://www.remicade.com) .
For complete Remicade EU prescribing information, call Schering-Plough
Corporation at +1 908-298-7616.
*******************************************************
U.S. FUTURE FULL OF FRACTURES
Unless Americans start getting enough calcium, vitamin D and physical
activity, their future is likely to include osteoporosis accompanied by a lot of
broken bones. This is the gist of a report by the US Surgeon General entitled
Bone Health and Osteoporosis The full report is more than 400 pages long and
took two years to prepare.
This comprehensive report makes a dire prediction -- that by the year 2020,
one in two Americans over age 50 will be at risk for fractures from
osteoporosis or low bone mass. Ten million Americans already do have
osteoporosis. Many
don't discover that they have osteoporosis until they experience an
unexpectedly broken bone.
The Surgeon General's report tries to dispel myths associated with
osteoporosis. For example, the segment of the population suffering from
osteoporosis
or other bone disease is NOT small, osteoporosis is NOT only a problem for
older white women, diagnosing osteoporosis is NOT a lengthy and painful
process,
osteoporosis is NOT unresponsive to treatment, and osteoporosis CAN be
prevented in the first place
In order to make sure that all the information contained in the report is
readily available to the general public, there is not only a free pamphlet
entitled The 2004 Surgeon General's Report on Bone Health and Osteoporosis. What
it Means To You, but 4 different fact sheets and even a streaming video
entitled Osteoporosis in the Family.
Comment: Many of us know of situations in our own families where
osteoporosis has had serious consequences. An uncle who broke his hip when he
slipped on
a wet sidewalk while getting the morning newspaper, a mother whose COPD
worsened as her spinal column compressed and her rib cage collapsed, a
stepmother
who could not walk because it became impossible to surgically repair and
re-repair her osteoporotic hips. All of these family members might have lived
longer if their osteoporosis had been diagnosed and aggressively treated at an
earlier age. Certainly, their quality of life in their final years would have
been greatly improved. Barbara K. Hecht, Ph.D., Frederick Hecht, M.D.,
Medical Editors, MedicineNet.com
BY 2020, ONE IN TWO AMERICANS OVER AGE 50 WILL BE AT RISK FOR FRACTURES FROM
OSTEOPORIS OR LOW BONE MASS
The Surgeon General issues first-ever report on nation's bone health
U.S. Surgeon General Richard H. Carmona, M.D., M.P.H., F.A.C.S., warned
today in a new report that by 2020, half of all American citizens older than 50
will be at risk for fractures from osteoporosis and low bone mass if no
immediate action is taken by individuals at risk, doctors, health systems, and
policymakers. This new report, "Bone Health and Osteoporosis: A Report of the
Surgeon General" says that 10 million Americans over the age of 50 have
osteoporosis, the most common bone disease, while another 34 million are at risk
for
developing osteoporosis. And each year, roughly 1.5 million people suffer a
bone fracture related to osteoporosis.
This report is the first-ever Surgeon General's report on the topic of bone
health. Osteoporosis and other bone diseases, such as Paget's disease and
osteogenesis imperfecta can lead to a downward spiral in physical health and
quality of life, including losing the ability to walk, stand up, or dress, and
can lead to premature death.
"This report will shape the way we approach, talk, and act about bone
diseases," HHS Secretary Tommy G. Thompson said. "The more we learn, the more we
realize that so many diseases are preventable, from obesity, to many types of
cancer, and now bone disease. I want to thank Dr. Carmona and all the
scientists and researchers who worked on this report. I look forward to the
impact
this new information will make in the health of communities."
Other findings in the report include:
About 20 percent of senior citizens who suffer a hip fracture die within a
year of fracture.
About 20 percent of individuals with a hip fracture end up in a nursing home
within a year.
Hip fractures account for 300,000 hospitalizations each year.
The direct care costs for osteoporotic fractures alone are already up to $18
billion each year. That number is expected to increase if action to prevent
osteoporosis is not taken now.
"Osteoporosis isn't just your grandmother's disease. We all need to take
better care of our bones," Dr. Carmona said. "The good news is that you are
never too old or too young to improve your bone health. With healthy nutrition,
physical activity every day, and regular medical check-ups and screenings,
Americans of all ages can have strong bones and live longer, healthier lives.
Likewise, if it's diagnosed in time, osteoporosis can be treated with new drugs
that help prevent bone loss and rebuild bone before life-threatening
fractures occur."
According to the new report, osteoporosis is a "silent" condition because
many Americans are unaware that their bone health is in jeopardy. In fact, four
times as many men and nearly three times as many women have osteoporosis than
report having the condition. One of the most dangerous myths about
osteoporosis is that only women need to worry about bone health. Osteoporosis
affects
men and women of all races, and while bone weakness manifests in older
Americans, strong bones begin in childhood.
The Surgeon General's report is a call for Americans to take action to
improve and maintain healthy bones. The report includes recommendations on what
Americans can do to decrease the likelihood of developing osteoporosis.
These recommendations include:
Getting the recommended amounts of calcium and vitamin D. High levels of
calcium can be found in milk, leafy green vegetables, soybeans, yogurt and
cheese. Vitamin D is produced in the skin by exposure to the sun and is found
in
fortified milk and other foods. For individuals who are not getting enough
calcium and vitamin D in the diet, supplements may be helpful. The average
adult
under 50 needs about 1000mg of calcium per day and 200 International Units
(IU) of Vitamin D (one cup of vitamin D fortified milk provides 302 mg of
calcium and 50 IU of Vitamin D).
Maintaining a healthy weight and being physically active at least 30 minutes
a day for adults and 60 minutes a day for children, including weight-bearing
activities to improve strength and balance.
Taking steps to minimize the risk of falls by removing items that might
cause tripping, improving lighting, and encouraging regular exercise and vision
tests to improve balance and coordination.
"I always worried about heart disease and cancer, but was never concerned
about the health of my bones," said Abby Perelman, who is being treated for
osteoporosis. "I wish I knew then what I know now -- that a healthy diet and
physical activity can make bones stronger and healthier."
The report also calls on health care professionals to help Americans
maintain healthy bones by evaluating risks for patients of all ages,
recommending
bone density tests for women over the age of 65 and for any man or woman who
suffers even a minor fracture after the age of 50. In addition, the report
calls on health care professionals to look for "red flags" that may indicate
that
someone is at risk, including people who are under 50 who have had multiple
fractures, or patients who take medications or have a disease that can lead
to bone loss.
"All health care professionals need to be aware of the early indicators of
bone disease," said Dr. Lawrence Raisz of the University of Connecticut Health
Center, one of the scientific editors of the report. "Many of my patients had
no idea their minor fracture was an indication of a larger problem. The
health care system can do a better job of helping patients protect themselves
from bone disease."
In addition to the release of the report, the Surgeon General has published
a companion "People's Piece" specifically written for the American people. The
magazine-style, full-color booklet offers ready-to-use information on how
people can improve their bone health. This is the second People's Piece that
Dr. Carmona has produced as part of his commitments to improving the health
literacy of Americans and providing the best scientific information available
in
a way that everyone can understand and use to live longer, healthier lives.
The first People's Piece discussed the health consequences of smoking and was
released in May 2004.
The free People's Piece, The 2004 Surgeon General's Report on Bone Health
and Osteoporosis: What It Means To You, is available by calling toll free
1-866-718-BONE or visiting _www.surgeongeneral.gov_
(http://www.surgeongeneral.gov)
.
"Thirty years ago, doctors thought weak bones and osteoporosis were a
natural part of aging, but today we know they are not. We can do a lot to
prevent
bone disease," said Dr. Carmona. "Everyone has a role to play in improving
bone health, and this report is a starting point for national action on bone
health. Let's get started by taking action today in homes, health care
settings,
and communities across our nation."
Source: US Department of Health & Human Services - © 1996-2004 MedicineNet,
Inc. All rights reserved.
************************************************
RESEARCHERS: STRESS CAUSES FORGETFULNESS
WASHINGTON (AP) -- How many people have gotten home after a blindingly
stressful day and realize they've forgotten some important event or errand?
Well,
now at least there's a scientific explanation for the oversight. Stress makes
you forgetful.
People going on stage or taking an exam or finding themselves in similarly
tough situations already knew this, of course.
But a team of researchers has found how it happens, a discovery that they
say could point the way to better treatments for such illnesses as schizophrenia
and bipolar disorder.
Stressful situations in which the individual has no control were found to
activate an enzyme in the brain called protein kinase C, which impairs the
short-term memory and other functions in the prefrontal cortex, the
executive-decision part of the brain, says Dr. Amy F. T. Arnsten of Yale Medical
School.
The findings were reported in the journal Science.
The PKC enzyme is also active in bipolar disorder and schizophrenia, and
Arnsten notes that a first psychotic episode can be precipitated by a stressful
situation, such as going away to college for the first time or joining the
military.
By affecting that part of the brain, the researchers say, PKC could be a
factor in the distractibility, impulsiveness and impaired judgment that occurs
in those illnesses.
The finding that uncontrolled stress activates PKC indicates a possible new
direction for treatments â seeking drugs that inhibit PKC, Arnsten said in a
telephone interview.
"These new findings may also help us understand the impulsivity and
distractibility observed in children with lead poisoning," she said. "Very low
levels
of lead can activate PKC, and this may lead to impaired regulation of
behavior."
The researchers used chemicals to induce stress in rats and monkeys because
the stress levels are easily controlled, Arnsten said.
It was similar to humans exposed to loud noise or panicking before an exam,
she said.
"It doesn't have to be traumatic, as long as you feel out of control," she
said. "Control is the essential factor. ... If you are confident, you don't
have these problems."
PKC affects a part of the brain that allows abstract reasoning, using
working memory that is constantly updated.
"This kind of memory, the ability to concentrate, seems to be impaired when
exposed to mild stresses," she said.
Scientists think the effect evolved as a protective mechanism in the event
of danger, she said.
"If you're in dangerous conditions it helps to be distractible, to hear
every little sound in the woods and react rapidly, instinctually," she said.
"It's like getting cut off on the highway. You don't want to be a slow,
thoughtful creature. ... You want to react and hit brakes."
The research was funded by the Public Health Service, the Stanley
Foundation, National Institute of Mental Health, Stanley Medical Research
Institute and
the National Alliance for Research on Schizophrenia and Depression.
Copyright 2004 The Associated Press. All rights reserved.
*******************************************************
EXPERTS: FEWER TAKE STATINS THAN SHOULD
(The Associated Press)
Perhaps no medicine today is so widely regarded as a wonder drug as the
cholesterol-lowering statin. From Zocor to Lipitor to Pravachol, statins are top
sellers in a country where half of American adults have high cholesterol.
In Britain, they recently became available over the counter, and there are
efforts afoot in the United States to do the same.
This summer, a U.S. advisory panel set recommended cholesterol levels even
lower, encouraging millions more Americans to take statins. But because all but
one member of that panel receives money from the makers of those drugs, some
consumer advocates wonder about the credibility of the latest advice.
Still, no one questions the overall value of these drugs, which quickly and
drastically lower the cholesterol that builds up in blood vessels, thus
preventing heart attacks and strokes.
The first statin, Mevacor, came on the market in 1987. Now there are five
others in the United States. About 13 million Americans take statins -- roughly
one-third of the number for whom they're recommended.
The most famous recent example is former President Bill Clinton, who was
prescribed a statin for high cholesterol when he left office several years ago
but who stopped taking it at some point. On Labor Day, he had a quadruple
bypass operation for arteries so severely clogged that doctors said he was in
grave danger of a major heart attack.
Proponents of statins, such as the National Lipid Association, a largely
industry-funded group, say Clinton's case shows the need for educating more
doctors to treat cholesterol more aggressively.
"How in the heck did he get something that could be prevented? The
president's doctors didn't even know how to manage lipids," said the group's
executive
director, Christopher Seymour.
A federally funded program, the National Cholesterol Education Program, was
formed in 1985 to help educate Americans about this risk factor. Its revised
guidelines, issued in July, have been criticized by some as perhaps too
aggressive for certain groups like the elderly, women and people with diabetes.
They advise people at high risk of a heart attack to get their level of LDL
or "bad" cholesterol to 70, instead of 100, the previous target. The
guidelines urge people at moderate-to-high risk to aim for 100 versus the
previous
target of 130.
The drugs and their makers are Merck's lovastatin (Mevacor) and simvastatin
(Zocor); Bristol-Myers Squibb's pravastatin (Pravachol); Novartis
Pharmaceuticals' fluvastatin (Lescol); Pfizer's atorvastatin (Lipitor), and
AstraZeneca's rosuvastatin (Crestor).
Side effects are very rare, but can include severe muscle weakness. The
federal Food and Drug Administration has warned doctors to be careful about
prescribing statins, particularly Crestor, in certain patients at higher risk of
complications, including certain Asians, the elderly, and people with thyroid
or kidney problems. Copyright 2004 The Associated Press. All rights reserved.
*****************************************************
MEDICARE PREMIUMS TO RISE 17 PERCENT IN 2005
Increase in payments for doctor visits is largest ever jump - The Associated
Press
WASHINGTON - Medicare premiums for doctor visits will rise 17 percent next
year, the Bush administration. The $11.60-a-month increase is the largest in
the programâs 40-year-history.
Monthly payments for Part B of the government health care program for older
and disabled Americans â doctor visits and most other non-hospital expenses
â
will jump to $78.20 from $66.60.
The premiums are updated annually under a formula set by law. The federal
government picks up about 75 percent of the cost of Part B benefits and
beneficiaries pay the rest.
The increase reflects rapidly rising health costs and last yearâs Medicare
overhaul, said Dr. Mark McClellan, administrator of the federal Centers for
Medicare and Medicaid Services. For example, the law blocked a planned 4.5
percent cut in Medicare payments to physicians and replaced it with a 1.5
percent
increase.
The administration, seeking political advantage among older voters, has
tried to depict the Medicare law, with its first-ever prescription drug benefit,
as a boon to seniors.
âThe new premiums reflect an enhanced Medicare that is providing seniors and
people with disabilities with strengthened access to physician services and
new preventive benefits,â McClellan said.
But Democrats and other critics have derided the law as a giveaway to
insurers, drug makers and medical providers.
Premiums have been increasing at an accelerating pace in recent years,
rising 13.5 percent in 2004 and 8.7 percent last year.
In addition, the deductible for Part B services will rise $10 next year, to
$110, another change mandated by the Medicare law.
About 93 percent of Medicareâs 41.8 million beneficiaries are enrolled in
Part B, which helps pay for physician services, hospital outpatient care,
durable medical equipment and other services, including some home health care.
McClellan said new preventive health services that Medicare will begin
covering in 2005, including a physical for those who become eligible for
Medicare
and screening for diabetes, will help save money for beneficiaries.
The 4.6 million people in Medicare managed care could see their
out-of-pocket expenses decline next year, he said.
âOn net, Medicare beneficiaries are saving money,â McClellan said.
The government also said the Part A portion of Medicare that pays for
hospital stays, skilled nursing facilities and some home health care also will
see
an increase in the deductible, which will rise $36 to $912 next year. It is a
Medicare recipientâs only cost for up to 60 days of inpatient hospital care.
© 2004 The Associated Press. All rights reserved.
**************************************************
Editors Note: Because of the ongoing controversy regarding all of the Cox -2
Inhibitor drugs, and what was reported in my last two newsletters, I have
decided to publish an extra issue on 12/01 pertaining solely to this subject.
There has been so much information about this recently, along with trouble and
controversy at the FDA.
If you are taking Vioxx, Celebrex, or Bextra and have Psoriatic Arthritis
along with a heart condition, please check with your Doctor.
Good Health to All,
Jack Nicholas
Newsletter Editor
_Cornishpro@..._ (mailto:Cornishpro@...)
Issue 2004 11/30/04 -17

I find something that works great and then loses effectiveness, so I use
different ones each time I shampoo. It gets a little crowded in the
shower!!!!
T-Gel is my standard. Then I use anything with tea tree oil or peppermint.
Arbonne has a good one. I order that on line. My hairdresser gave me a
really good peppermint rinse, but I put it in my shower caddy and threw away
the bottle. It tingles when I put it on--and seems to stop the itching for
hours.
At times, I use antibiotic ointment on the bleeding patches at bedtime.
That gives relief for several day. I use the liquid dovonex for scalp also.
Good luck. There is no simple solution.
Ks Di

---
Hi Patty,
I don't know if you are on Enbrel-but that is the only thing that
helped my awful P on my scalp that I have had since I've been about
12 years old-Enbrel cleared up all of it, but the sad thing it hasn't
done anything for my joint pain, tireness, etc.!! My Rheumy said he
has given up on me because he has turned to the "big guns" Enbrel and
Arava combined with Methotrexate and it hasn't helped with the PA at
all. He wants me to call for a 2nd opinion of another Rheumy because
he thinks I have something else going on with my PA. I use to use T-
GEL by Neutrogena-which would help but messed up with my coloring of
my hair. T-SAL wasn't strong enough. Sorry this sounds like a
downer.
God Bless, Sue.

I can only think of a few natural supplements that
will help with inflammation and not interfere with
other meds. Try MSM and Flax oil these help a lot with
my inflammation druing the beginning of PM.
Robbin

Hi everyone,
I hope Fran doesn't mind, this is the funniest story I have ever read-
every time I want a good laugh I have to read this!! LOL!!
God Bless, Sue.

Harold, the 80% pertains to several rheumatic diseases
not just RA. Polymyositis, dermatomyositis,
Scleraderma, Lupus just to mention a few others!
But I do agree that we need to obtain 2nd opinions. I
had just the opposit experience. My MRI showed a
miniscus tear in my left knee and that was what we
thought was causing me to fall when I ran and also
causing the pain. I had the knee surgery and all they
did was to clean out some junk. But my symptoms became
worse until I approached my family physician and then
began the testing, EMG, Blood work and finally muscle
biopsy. AP ahs worked wonders for me and I am working
on year number 3.
--- "Harald Weiss, Technical Marketing Group"

Thank you for your wonderful letter, Doctor Jes. And thank you for
reminding all of us of the multiplicity of factors. I was fortunate enough to
first
start with a doctor who knew only the AP. I was equally fortunate to have a
wonderful mentor to encourage me to look beyond doing only the antibiotic
and at the same time, concentrate on ridding my body of metals, pesticides,
yeast and paracites while at the same time concentrating on limiting my food
intake to only very, very healthy choices in order to allow the body every
chance to get better. These are life altering choices.
Again, thank you. Sandra Fain
************************************** AOL now offers free email to everyone.
Find out more about what's free from AOL at http://www.aol.com.

hi,
in regard to the question about hurting again after stopping a
medicine. i have never taken celebrex, but have had to stop
taking other meds. usually within a week or two the pain starts
again. it is just because your immune sytem has "revved"up again.
i always think i am doing so good until i have to go off my meds,
then it is reality check time and my body reminds me just how
bad this disease is.
i hope that you can find a medicine to help you that doesn't hurt
you too. for me, enbrel has been the miracle drug.
susan in ohio

In a message dated 11/29/2004 6:08:17 AM Eastern Standard Time,
OSBORNE@... writes:
HOPE YOU HAD A BLESSED THANKSGIVING (I KNOW SOMETIMES IT'S HARD TO FIND
SOMETHING TO BE THANKFUL ABOUT!)
TAKE CARE,
MAUREEN IN TENNESSEE
Maureen,
I am so sorry to hear about all the eye problems you are having. As we had
said here, You should not mess around with the eyes. Did you get several
opinions regarding your eye problem because I would not trust one person with
this.
Janet

Linda,
You state that the AP works for about 80% of people. That is for 80%
of people with RA. One problem is that there are other rheumatic
diseases, such as polymyalgia rheumatica, and even physical injuries,
which produce many of the same symptoms as RA -- but are not RA.
These diseases and physical conditions may not respond to the AP. I
was misdiagnosed as having RA over 5 years and later found to have
had a meniscal knee tear all along. I think many of us should get
second opinion diagnoses, especially those among the 20% who do not
respond to the AP.
Sincerely, Harald

Here I go again. (Polymyositis) The last time I posted I was
tapering the prednisone 1mg per week and got down to 5mg per day but
because excessive amount of pain was brought back up to 7mg per day,
and doxycycline was added to replace one of the daily doses of
mino. I wasn't feeling much better so after 6 weeks I switched back
to mino 100 mg 2x's daily and got rid of the doxy which the dr said
I could do if I did not feel any better.
Pain wise I am feeling much better. Now only my hands bother me
mostly in the morning but swollen most of the day.
I have been battling chest congestion.
Today I got a call from the drs office to go in and have bloodwork
done again as my CPK shot up from 696 to 2600. My infectious
disease specialist just put me on Ceftin 500 mg 2x's daily for 14
days to get rid of this chest congestion.
Other than the mino, zythromax and prednisone, what else should I do
for my CPK? Am I at an impass? I'm scared and so is my husband. I
follow up with my rheumy on Monday. Any suggestions?
Desperate!
Rosa

Carla,
I am so proud of you. Using the cane and the cart. Even with
blindness determination won out and wasn't the freedom wonderful. I
can definitely understand the dilema with the two canes but I guess
it will take some time to get adjusted to using both. You will find
what's comfortable to you I am sure in no time. I only wish the
motorized carts had a horn or something so when you are turning the
corner people know your coming. Gosh we both made wonderful
accomplishments this weekend. I would say pat yourself on the back
but I know I can't do that without pain so I am sending you a gentle
high five cyber style.
Pat

Dear Marti,
I don't mean to intrude on your conversation with Cat, but I have
costochondritis , (what a mouthful!) and my rheumatologist told me it's
pretty normal for the pain from this to spread all around. He told me it
forms inflammation all over your chest area and around your collar bones as
well. My collar bones have been swollen now for ages, and I was blaming it
on the prednisone. (Which I guess it still could be) But my doctor said it
went along with PA and the soreness from costochondritis. I never thought
of looking for those lumps on the X-rays, since mine seem to come and go.
The ones on my collar bones are pretty stationary, but even they go up and
down at times. (If they were on my shoulders I would feel like Popeye after
he eats his spinach I guess...lol.)
I also happen to know that fibro never goes away with prednisone of any
type. When I was just dealing with fibromyalgia, and would have to put on
prednisone for my asthma, my fibro would always act up. My doctor said it
due to the sleep disorder that the prednisone causes, so that might be one
reason. I take prednisone now every day (hopefully I'll get the dosage
lower soon, since I hate the side effects and know what the stuff is doing
to me inside), but until then, it lets me at least walk.
My doctor has always acted like costochondritis is a minor problem compared
to all the other problems PA causes. He thinks it can be very painful, but
doesn't normally cause any damage. He also told me stress can make it
worse...big surprise there!
Hope this helps in someway. Love, Fran

Hi Patty: OMG -- are "trigger points" yet ANOTHER manifestation of
PA?? Good Lord, I have those, too!! Like you, I get shock-after-
shock as I'm learning all the different ways/areas this disease does
its dirty work.
I have them in my back, the worst located over my right shoulder
blade &/or neck -- on occasion getting so bad that my PCP gives me
Medrol to "calm them down" when Flexeril & Ultracet won't touch it.
Also have an area over my gallbladder.
The REEEEAAAALLLLY bad part, though, have been the spasms up my
rectum for the past year that developed just prior to my last pelvic
floor repair surgery. It's only recently begun to improve -- even
slightly -- and it is simply murderous. Makes me a real grouch!
Thanks for sharing -- I'm learning SO much here!
Warmly,
Cat

Hi Janet: OMG, iritis is a nightmare, isn't it? Oddly enough, I,
too, just "woke up" one morning with it. My husband flipped on the
light in the bathroom and, even though my eyes were closed, that
little bit of light going through closed eyelids was enough to
provoke a SCREAM (seriously). Didn't make matters any better that it
was a bright, sunshiny, Texas day that day. Man, was I ever thankful
to be placed in a pitch black room at the ophthamologist's office ...
and I felt like licking the man's feet in gratitude once he dilated
my pupil and that pain stopped. UGH!
I only had it once more after that -- and it's been years & years
now. Again, I'm just learning about this disease but it sounds as if
in some people is may have periods of flare ups and then remission.
I think that must be the pattern in my case. Certainly hope this
doesn't happen to me -- or YOU! -- again (or anyone else, for that
matter). Hopefully the anti-inflammatory treatments for PA are
enough to keep that at bay, you think??
Blessings,
Cat

Hi Maureen: I was told all those years ago when having the continual
eye problems that the usage of steroids (drops & ointment) would put
me at greater risk of developing cataracts. Scared the poo outta me
at the time, but so far, so good. Gotta love those med side effects!
Warmly,
Cat

Well I have to start the SSD process this morning. There is a lady I
have to call concerning it who works at SSD claims. It should be
interesting but I am ready. My doctor I see on the 8th and he is
willing to do all his share. So cross your fingers for me as the long
road of paperwork begins.
Thanks Pat

Hi Pat,
Thanks for your post about the carts that I've been fearful of using
for the same reasons you mentioned. By the time we've walked over
Wally-World, I'm hurting too much to go anywhere else to shop or have
to sit in the truck while hubby finishes the errands.
WordWeb defines courage: A quality of spirit that enables you to face
danger of pain without showing fear
My definition: Doing a chore in spite of my fear
Both seem to describe you to a "T". Bravo!!
patty in the pre-dawn of the Pineywoods of East Texas

Marti and Rachel,
Another cause for pain in those areas can be muscle spasms! I've
found tender spots in those areas plus others and learned they're all
caused by spasms due to fibro or inflammation in a related area. My
dr explained that we have muscles down in the ear that can spasm when
it feels like an 'old fashioned' earache. When I tried a cold pack,
it made it worse but heat helps as well as massaging around the area
and taking muscle relaxers.
There is no end to the surprises with these diseases!
patty in the pre-dawn Pineywoods of East Texas

Hi everyone,
Hope that you have all had a good weekend as best as you could. We are
getting snow here as we speak! Take it back! I hate snow!
Ok, so I have to share my experiences of this weekend. First, my long
time friend and her husband came to visit me and we went shopping. We
went various places, and I tried out my new support cane. It is just a
single point basic black cane. The home health supply store worker
explained to me the basics of using it, which was pretty simple. She
said that usually you use it on your good side to help support the bad
one, but in some cases people don't always use it that way and find
other ways that it worked better for them. My first challenge was, I am
right handed and usually use my white cane in my right hand. I went
ahead and use the support cane in my left. Once I reminded myself to
use my white cane I'd forget to use the support cane and vise
versa.lol...but once I got a system down it worked pretty good. I did
notice my right hip aching a little bit, like maybe the muscles on that
side were a little stressed due to something new. I was able to walk
around in several different stores and keep up at a much faster pace
than I would have without that support cane. I don't really know how
many strange looks I got from the john Q public but I don't care. The
fact that I could walk around and not hurt as much was great. I did get
warn out by early evening, so I decided to take the plunge and try the
electric cart at Wal-Mart. Pat, I read that you recently did this too.
I thought of you when I tried mine out! *smile* Well, it really
didn't go too bad. I have some vision, not much but I could actually
navigate fairly well. Only took the corner of a display once and almost
didn't stop quick enough for a person, but other than that then losing
my girlfriend and her husband behind people I did great! It was soooooo
much fun! It's the closest thing I can experience to driving a car! In
high school, my best friend and I went out on a country road and she let
me drive her car with a bit of help steering! I had a blast with that!
Using this cart was just great, I'd go to Wal-Mart and places more if
they had stuff like that which I am sure they do. The only thing I had
to explain to people was that I am blind, like a sales person when I
needed some help finding something while my friends went off to another
part of the store. Their was no way I could have my white cane in use,
but I could try to leave it more visible next time. I wonder what else
I could do to make it known to people that I am blind?
Well, it was a great experience, and even though I am still a bit
discouraged on the cane idea, I am not as much as I saw that it gave me
some sort of independence which I want! So, thought I'd share my
experiences with you.
Warm hugs to all!
Carla, Jacques (The Little Golden Boy),
Sandy & Schroeder (Kitties)
HYPERLINK "mailto:claesch@..."claesch@...
Interested in Buying Avon?
To browse for products, or
place an order visit
HYPERLINK "http://www.youravon.com/claesch/"www.youravon.com/claesch/
Our Personal Webpage
HYPERLINK
"http://www.geocities.com/prayingkitty/"www.geocities.com/prayingkitty/

In a message dated 11/28/2004 11:56:26 AM Eastern Standard Time,
catwright@... writes:
. At that point, I went to the ophthamologist and the condition
was diagnosed as, "occular migraines." Was told that the cause was
the same mechanism responsible for migraine headaches only in my
case, I only experienced the visual disturbances, sans headache
(thank goodness!).
Hi Cat,
I also had this trouble you are describing. The first time was so weird
because I started having partial vision in eyes and that shimmery vision like
you described. It was scary but it was also diagnosed as ocular migraines. I
also got up one morning with a great deal of pain in one of my eyes and in
the white part there was red inflamation that looked like scrapes in my eyes.
I went to the eye doctor and he said it was associated with inflammatory
disease. This was before I had been diagnosed with PA. It was iritis. I also
have dry eyes as well
Janet

thanks, Cat,
This is what I suspect too. I even have a bony like lump developing
on my clavicle that no one can figure out. the docs can feel it but
it doesn't show up on an xray...unless the radiologist missed it..i
have trouble trusting them too...I was repeatedly told the fusion in
my neck was congenital...knew that couldn't be right since i had had
xrays before and it wasn't there....it was pa.
yes...the breast bone pain is wierd and my costochondritis wraps
around to the ribs in back....very painful. My rheum still swears it
is all fibro but a medrol pack substantially reduced the pain...
yes...I can see where being a nursing student could have it's
downfalls...there must be CT all over the place that I have never
heard of...hopefully ....you won't experience pa to that extent.
I am learning the hard way where some of it is.
Best,
Marti

Well, I only did Remicade for 9 mts. The was after a traditional dosage of
enbrel for almost 2 years. I have been on double dosage Enbrel for a year now,
but about to switch to Humira next week.
-L
rustytinman2 <Jrdoubleyou@...
Anybody have a success story of either Enbrel or Humira working after
taking Remicade for a long period of time? I'm just now (after 2
years) building up the antibodies that make the medicine ineffective.
Anybody ever had success with Enbrel after Remicade? Any advice would
be appreciated as I'm suddenly being reminded of the pain I'd thought
was behind me.

according to my docs here my thyroid is fine but according to the
newer standards people here have mentioned I have low thyroid. I
test low at Mayo and then when they retest here I test OK...finally
figured out they were going by 2 sets of standards. If I am able to
get up to mayo's again I would like to request to see an
endorcrinologist. I think it was you who told us your endo said when
you are dealing with an autoimmune disease you throw all the regular
standards out the window..When I read about hypothyroidsm I certainly
have all the symptoms. My doc here looked as if he was going to hit
me if I brought it up one more time and he said there was no endo
here that would be progressive enough to help me.
who would have realized there is so much controversy just surrounding
the thyroid...very frustrating for the patient.
take care,
Marti

Dear Marti: Just re-read this post and was horrified at how "snotty"
it sounded ... reminded me of a couple of annoying professors I
know ... sheeesh!
Sincere apologies for the condescending tone ... t'wasn't mean that
way!
Warmly (really!!)
Cat

Dear Rachel, I have a really bad TMJ problem and lots of time that spot
behind my hear hurts. Arthritis can attack any joint and my jaw was the
first to show the real damage. If you have trouble with grinding your teeth
at night, or if you notice your jaw pops or makes noises when you eat, you
might want to get it checked out by a dentist. Hopefully, you just have a
swollen gland or something that is bothering you from PA. I get those from
time to time too and they do hurt like crazy.
I always hate it when the doctor tells me it's impossible for something to
be inflamed in a spot that is killing me. I usually just say, then what is
causing the pain? And of course they never know. If you need to know
anything else about TMJ unfortunately happen to know a lot on the subject.
Take care and I hope you feel better soon. Love, Fran

Hi my name is Peter l am 30 years old and was diagnosed with PA in my
right knee/foot when l was 24, since then l have had a total knee
replacement and have just recently had my right foot fused. Since
been diagnosed with PA l have had many drugs/therapies without much
sucess my only saviour has been Celebrex which l have taken daily for
the last 5 years. Although the Celebrex helped with daily life it has
taken its toll on my liver, stomach, iron levels etc so l decided to
stop taking it after my last operation which was 4 weeks ago.....bad
move. As a result of withdrawing myself from the meds l am in quite a
bit of discomfort which l expected to be the case, my only relief is
from taking Panadol which l fear will be just as hazourdous taking
long term. Has anyone had a similar problem with withdrawals? if so
what was your solution.
Thanks Peter

PLEASE FORGIVE THE CAPS - SOME DAYS IT'S JUST EASIER...
THIS WAS A NOTE I WROTE DIRCTLY BACK TO RJ ABOUT THE EYESITE PROBLEMS SHE
HAD BEEN WRITING.
I THOUGHT I WOULD SHARE WITH THE REST OF THE GROUP. THE EYE PROBLEMS THAT I
HAVE BEEN HAVING HAVE BEEN BY FAR THE SCARIEST DIAGNOSIS THAT I HAVE HAD SO
FAR. YOUR EYE SITE IS SO PRECIOUS.
THIS WAS MY NOTE TO RJ :
I HAVE HAD SOME MAJOR PROBLEMS WITH MY EYES BEGINNING LAST FALL. FIRST OF
ALL I STARTED HAVING SYMPTOMS OF A DETACHED RETINA IN ONE EYE - FLASHES AND
MANY FLOATERS. I IMMEDIATELY HAD IT CHECKED OUT WITH MY OPHTHALMOLOGIST AND
HE SAID THAT IT IS NOT DETACHED, BUT
WAS IN THE FIRST STAGES. HE SAID THAT IT COULD BE CAUSED BY THE RETINAL
KERATOTOMY THAT I HAD DONE ABOUT 10 YEARS AGO. IT WORKED MIRACULOUSLY. I
WENT FROM BEING LEGALLY BLIND TO 20/20 IN EACH EYE.
BUT.... HE ALSO SAID THAT LONG TERM USE OF PREDNISONE CAN ALSO CAUSE IT.
WHEN I WENT FOR MY FOLLOW UP EXAM A COUPLE OF WEEKS LATER (ONE OF THE WEEKS
WAS ON A CRUISE AND ALL I DID WAS WORRY ABOUT MY EYES!) ANYWAY, AT THAT EXAM
HE FOUND CATARACTS IN BOTH EYES! I HAD SURGERY ON MY RIGHT EYE THE NEXT WEEK
AND IN THE FOLLOWING WEEKS MY VISION STILL DID NOT CLEAR UP. THEY DECIDED TO
IMPLANT ANOTHER LENS ON TOP OF THE LENS THEY PUT IN DURING THE FIRST
SURGERY. THAT WAS SEVERAL MONTHS AGO AND STILL NO CHANGE. I'M HAVING TO WEAR
GLASSES FOR THE FIRST TIME IN 10 YEARS! SINCE MY VISION KEEPS CHANGING
SLIGHTLY WITH EVERY EXAM HE JUST WANTS TO WAIT AND SEE IF IT MIGHT CLEAR UP
ON IT'S OWN. I SURE DON'T WANT THEM TO TOUCH MY LEFT EYE UNTIL THE RIGHT
ONE CLEARS UP!!
ALL OF THIS DOES NOT SOUND LIKE WHAT YOUR PROBLEM IS, SO MAYBE YOU WILL LUCK
OUT!
HOPE YOU HAD A BLESSED THANKSGIVING (I KNOW SOMETIMES IT'S HARD TO FIND
SOMETHING TO BE THANKFUL ABOUT!)
TAKE CARE,
MAUREEN IN TENNESSEE

Thanks! I tried your suggestions and it did help - not completly
painless but next time I'll leave the frozen corn on my thigh
longer.
Heather

Anybody have a success story of either Enbrel or Humira working after
taking Remicade for a long period of time? I'm just now (after 2
years) building up the antibodies that make the medicine ineffective.
Anybody ever had success with Enbrel after Remicade? Any advice would
be appreciated as I'm suddenly being reminded of the pain I'd thought
was behind me.

Hi Marti: "itis" is a suffix that means, "inflammation."
Mastoiditis is inflammation of the mastoid process, that bony thing
one feels behind the ear. I was told at the time that this typically
develops as a result of an ear infection that has spread. What
stumped the internist was -- I did not have an ear infection! It was
a mystery as to how or why I developed it; all the more reason for
him to suspect lupus. It's been many years now since that happened
and I can't recall what it was that I was given, but whatever it was,
it took care of it and it never happened again. Was quite painful,
though -- I feel for you!
The pain in the breastbone is wierd, isn't it? I'll swear, it can
feel just like someone has given me a good kick there; gets really,
really sore. I found quite a bit of info on sternal pain during a
web search on PA and found it interesting. An example:
"Inflammation the of chest wall and of the cartilage that links the
ribs to the breastbone (sternum) can cause chest pain, as seen in
costochondritis."
http://www.medicinenet.com/psoriatic_arthritis/article.htm
Considering that connective tissue is the most abundant in the body --
and PA is a disorder that affects not only the joints & skin but the
CT -- I suspect just about nothing, or nowhere, is off-limits.
Sometimes I wish I weren't a nursing student! (sigh ... )
Warmly,
Cat

Congratulations, Pat! What a wonderful milestone this is. The last time I
spoke of how empowering I found the motorized cart some people here poo
poo-ed it as a sign of how much their lives would have deteriorated if they had
to
resort to that while I saw it as a wonderful gift to me to be able to shop
without pain. I can't change the fact that I have this disease so instead of
griping about having to use special things, I look at each one of them as a
present to help me live the life I have been given to its fullest. Yes, the
first ride is the hardest and the ride you're on is the best. I'm so happy
for you.
Wishing you wellness,
Kathy F.
In a message dated 11/28/2004 6:43:53 PM Eastern Standard Time,
Pfried520@... writes:
Hi all,
I finally got the courage to use the motorized cart in Walmart. It
was early enough so it wasn't crowded. I stuck my cane in the basket
and off I went. I didn't hit one person or knock over one display.
Came close a couple of times though. Anyway, what a difference it
made. I was able to go to one end of the store and get my cat food
and then the other side of the store to get a couple of groceries.
When I finally returned it to the lady she gave me some roses, and
she said " This is for your courage to make your life easier." It
brought tears to my eyes because my fear of using one and my
frustration about having to use one must of showed. But it helps keep
me mobile, it saved me a lot of pain and ultimately will empower me
with more freedom.
The first ride is the hardest.
Thanks for the support
Pat

In a message dated 11/28/2004 6:42:19 PM Eastern Standard Time,
mlw402@... writes:
bone behind my ear hurts so much sometimes it keeps me up at
night. I aked my rheum and she said there was no joint and it was
impossible to have inflammation there
Hi Marti, I have been having some ear trouble as well as a sore throat, and
just recently discovered it is all related to my thyroid being
enlarged...can't remember if you have thyroid stuff, but if you do it may be
worth a trip to
your endocrinologist...
Rachel

Hi all,
I finally got the courage to use the motorized cart in Walmart. It
was early enough so it wasn't crowded. I stuck my cane in the basket
and off I went. I didn't hit one person or knock over one display.
Came close a couple of times though. Anyway, what a difference it
made. I was able to go to one end of the store and get my cat food
and then the other side of the store to get a couple of groceries.
When I finally returned it to the lady she gave me some roses, and
she said " This is for your courage to make your life easier." It
brought tears to my eyes because my fear of using one and my
frustration about having to use one must of showed. But it helps keep
me mobile, it saved me a lot of pain and ultimately will empower me
with more freedom.
The first ride is the hardest.
Thanks for the support
Pat

(pain in the breastbone, mastoiditis,
I get terrible pain in the breast bone and the mastoid bone. the pain
in the bone behind my ear hurts so much sometimes it keeps me up at
night. I aked my rheum and she said there was no joint and it was
impossible to have inflammation there unless it was muscle related as
in fibro. My internist thinks i'm nuts....what is mastoiditis? I
haven't had good luck with the rheums where I live and don't trust
them, unfortunately.
Best,
Marti

Since I sent out my first post to the group today, I thought I'd better
introduce myself. I've had P since I was a kid, PA for the past 10 years. Last
spring I started using Humira and it was, at first, a miracle for me. No more
pain, no more P, no more stiffness and no more fatigue. Then in the middle of
August I got what the doctor called "lupus-like" symptoms. I went off Humira &
started the worst PA flare I've ever had. Now, 3 months later my PA flare seems
to be calming down - but it is still disabling, my P is flaring and I still have
signs of lupus. Has anyone else gotten drug induced lupus from one of the
biologics?
I'm so thrilled this group exists!
Beth

Dear Jennifer, I'm so sorry you are dealing with unsympathic people in your
life right now. I recently listed a set of pain tips just for this sort of
thing. I put my copy on the refrigerator where I was sure the whole family
would see it. Sometimes it helps people to really understand where you are
coming from. So many times, I don't think we communicate just how bad our
pain is. We say we hurt, but we don't really say how. Or we say we are
tired, but we don't explain that the fatigue if so exhausting just walking
across the room seems too much at times. If you think it will help, make a
copy and give them to your loved ones. I'll go ahead and list them here for
you, just incase you can't find the other email. Good luck and I hope these
help in some little way. Love, Fran
Tips for Dealing With People in Pain
1. People with chronic pain seem unreliable (we can't count on ourselves).
When feeling better we promise things (and mean it); when in serious pain,
we may not even show up. Pain people need the "rubber time" (flexible) found
in South Pacific countries and many aboriginal cultures.
2. An action or situation may result in pain several hours later, or even
the next day. Delayed pain is confusing to people who have never experienced
it.
3. Pain can inhibit listening and other communication skills. It's like
having someone shouting at you, or trying to talk with a fire alarm going
off in the room. The effect of pain on the mind can seem like attention
deficit disorder. So you may have to repeat a request, or write things down
for a person with chronic pain. Don't take it personally, or think that they
are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't
normally bother you may seem too loud or glaring.
5. Patience may seem short. We can't wait in a long line; can't wait for a
long, drawn out conversation.
6. Don't always ask "How are you?" unless you are genuinely prepared to
listen - it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very
temporary). When in pain, a small task, like hanging out the laundry, can
seem like a huge wall, too high to climb over. An hour later the same job
may be quite okay. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates
after a short rest. Chronic pain people appear to arrive and fade
unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or a comfortable
chair, is as important as knowing where a bathroom is. A visit is much more
enjoyable if the chronic pain person knows there is a refuge if needed. A
person with chronic pain may not want to go somewhere that has no refuge
(e.g. no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in
pain. Your offer of a pillow or a cup of tea can be a really big thing to a
person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a
body-wide feeling of discomfort, with hard to describe pains in the entire
back, or in both legs, but not in one particular spot you can point to. Our
vocabulary for pain is very limited, compared to the body's ability to feel
varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still
limited in its understanding of pain. Many people have pain that is not yet
classified by doctors as an officially recognized "disease". That does not
reduce the pain; it only reduces our ability to give it a label, and to have
you believe us

I received this March 20th from a lady out west with polymyositis that contacted
us a year or so ago, and thought it would encourage some of you with a like
problem. This lady was willing to do the extra things necessary to help in her
recovery.
Ethel
Ethel,
Just to let you know I am doing quite well . I am still on Minicin, and am
now trying to get down on Prednisone. I am so thankful that having been the
lowest on prednisone at 10mgs I am this week seeing how I do on six mgs . I have
been working on this since January, and I got the info on how to wean your self
off Prednisone, on your website .
As I progress on recovering, many people on seeing such progress have asked
how have you done this ? I refer them to Rheumatic . org , or give them the face
sheets of the website . I know how much it has helped me , and I can now jump
and run . Many things I thought I could never do again I am now doing . Last
week I wwnt bowling and golf all in one day . I am back to work and they are
amazed because they knew how bad I was getting . I believed , that if I did not
find help , what the Rheumy told me at the last visit , and his words were " I
have a lot of patients like you on ventilators " . That is when in desperation
along with the fact I could not afford " Cellcept" which costs $ 800.00
dollars a month , I decided to look one more time and see if I could find help
on the internet .
Praise God I found low dose antibiotic therapy and I knew instantly that
this was my answer to getting my health back . Of course I had nothing to lose
by doing it , but in my spirit I knew it would work .
I am planning a trip to North Dakota to see my daughter , grandchildren and
great grandchildren . She wants to accompany me to Oregon to see my Sister who
lives in Oregon , and is not doing well . I Never thought that this would be
possible, at this time last year and I could barely walk , was in so much pain,
and so weak that going out of the house was a rarity .
God is good and he uses people like you , and I pray for you and for the
work you do .
A sister in Christ ,
Esther

Hi RJ: Not sure if it was me you were referring to, but if so ...
I've had chronic eye troubles for years and years. Started at least
16-17 years ago with iritis (inflammation of the iris).
Ophthamologist told me at the time that it was very rare and usually
struck people with lupus. As I was also being plagued by other odd
problems at the time (pain in the breastbone, mastoiditis,
tendonitis, bursitis), my internist immediately ordered an ANA. Came
back negative. Got iritis, again; did another ANA -- also negative.
After that, keratitis (inflammation of the cornea), 5 corneal ulcers,
and conjunctivitis (inflammation of the conjunctiva). At that point
my internist said, "I'm going to treat you as if you have lupus, even
though the tests are negative." Treatment consisted of steroid and
antibiotic eye drops and ointments (and with iritis, the pupil has to
be dilated in order to stop the excruciating pain!). Then -- BOOM! --
all my wierd eye ailments just ... stopped. Went for years with no
eye problems other than chronic allergic conjunctivitis; for that I
was prescribed an eye drop to use twice daily and that has continued
all these years. (I should also add that I have been a contact lens
wearer for over 25 years; am also a bit of a germ-a-phobe so am
religiously "clean" about these things. Definately not one of those
who pops a lens in their mouth to moisten it and then back in the
eye -- ICK, ICK, ICK!!)
Two years ago I started having another strange problem. I'd have
these brief periods of not being able to see out of a portion of my
eye -- best description I can come up with is that it seemed as if I
was looking through a kaleidoscope ... was very "shimmery" looking.
These episodes would last 30 minutes to an hour, maybe, and then be
gone and my vision totally fine. Very wierd. Didn't think too much
about it until it occurred one afternoon while out shopping. Had to
sit in my car in the parking lot until it passed as I couldn't drive
home. At that point, I went to the ophthamologist and the condition
was diagnosed as, "occular migraines." Was told that the cause was
the same mechanism responsible for migraine headaches only in my
case, I only experienced the visual disturbances, sans headache
(thank goodness!).
Last January, I got conjunctivitis again and just phoned my PCP. He
called in antibiotic drops, which I used for the prescribed period.
Then went to see the ophthamologist, just to make sure all was well
considering my history. I was diagnosed at that time with severe dry
eye and told that the drops I'd been using for the allergic
conjunctivitis just weren't doing the job anymore. Was prescribed a
different eye drop for that, as well as one for the dry eye. Have
been doing fine until two weeks ago. Another round of antibiotic
drops, new contacts & cleaning/disinfecting regimen, etc., etc.
Kathy is right -- your vision is precious and PLEASE, DO see an
ophthamologist. Your symptoms could be due to any number of eye
disorders and it is not safe to ignore symptoms that are out-of-the-
ordinary. Even with something as "common" as conjunctivitis ("pink
eye"), you should be seen by a physician to determine the cause and
appropriate treatment (eg, can be allergic, bacterial, or viral).
I'm a rookie to PA so still in the "just learning" phase, but
according to all I've read, eye disorders (esp. inflammatory
conditions) are indeed common amongst those with PA and other
connective tissue disorders. In my case, it's been a bit of an, "ah
HA!" moment as all these wierd, unexplainable things over the years
are finally making sense. I was recently diagnosed by my
dermatologist and am scheduled to see a rheumatologist in January.
Wishing you well -- please get your eyeballs checked out!
Warmly,
Cat

hi
I tried something called Oxy Boost-dont know if it is
the same....has oxygen ions in it.....but since it is
an immune booster-It backfired and caused a flare
up-can't take anything to boost your immune system,
you know.......
I sure miss my echinacea tea.....:(
Deb
and ps-thanks Colleen-you make me smile-I have been
having one illness after another lately, bronchitis,
the flu which has now turned into a cold.......and am
very sleepy and achy-I think the tiredness is the
hardest to deal with.......

Dear Wendy, I've been in the group about 2 years now I think. It's amazing
how fast time passes now that I'm older. I remember as a child thinking the
summer lasted for a year. We have quite a few from Australia in our group
so I'm sure you will be hearing from some of them soon. My PA hit me really
hard in my toes to start with. I could barely stand on my feet let alone
walk any distance. The only good thing was eventually it left my toes and
moved on. I still have problems with my first joints of my toes, they seem
to almost be "stuck" all the time and larger than they used to be. I also
get cramps in them at night that hurt like crazy. (one of those cramps that
make you jump out of bed, if I could still jump...lol)
I was also told I have PA and RA, depending on which doctor you talk too. I
soon found out it doesn't really matter much. More people know of RA, but I
feel like my symptoms are more like PA. I have more tendon inflammation and
muscle pain and I think that goes with PA more than RA. Of course, I also
have Fibromyalgia, so that could explain it too.
I'm glad you decided to start posting. You said the summers are worse for
you than the winters? I live in Florida and we have so much humidity it
isn't' funny, but I can't tell much from day to day which type of weather
makes my joint hurt more. Mine seems more related to activity. The extreme
heat though does really bother me. I hope you aren't suffering too much
right now.
Write more when you feel like it and tell us more about yourself. It's good
to hear from you. Take care, Love,Fran

Hi Heather,
I agree - Humira can burn like crazy going in. The needles are actually a
narrower gauge than Enbrel, believe it or not. There are several things I've
done that have resulted in the shots hardly hurting at all. About 15-20
minutes before injecting, take the Humira out of the fridge, remove it from its
packaging and let it come to room temperature. While you are doing that, place
a box of frozen peas (reports are that frozen corn works just as well, LOL)
on your injection site and hold it there for 15-20 minutes. After about 15
minutes of freezing the injection site, rub the needle between your two palms
to give it further warmth. Then be sure to inject VERY, VERY, VERY slowly.
By doing this routine religiously, I can honestly say that my Humira
injections now are almost painless. I also no longer get an injection site
reaction
and I don't feel the horrible after-itch that I used to feel. Hope these
techniques work for you.
Let us know how it goes,
Kathy F.
In a message dated 11/28/2004 7:02:21 AM Eastern Standard Time,
heatherfitz@... writes:
Hi everyone - I recently started taking Humira and was wondering if
any of you experienced buring with the injection? I had taken
Enbrel for awhile and never had any difficulties with adminstering
it. The Humira needles seem to be thicker than the Enbrel and don't
break the skin as easily. Plus, it burns like a you know what
during the injection and for about 10 minutes afterwards. Then I'm
fine. Had this been anyone elses experience and are there any
suggestions to help a bit?
Thanks!
Heather

Has anyone in this group tried any of the following? Penta Water, clustered
water or oxidized water? If tried, were any of these products beneficial?
Thanks!
Roni

In a message dated 11/27/2004 7:20:31 PM Eastern Standard Time,
rachelviognier@... writes:
The combination of all of those
things helped me regain some strength and some flexibility, and then they
recommended that I do pilates once my PT was over. So I think, from what
you are
saying with the spasms, you may need to do some "pre-work!"
I think it is also more with me that I was diagnosed years back with
bulging discs and now I think it has gotten much worse. They could be more
deteriorated or herniated now. I get spasms laying in bed at night. I went
to PT
and got spasms when the therapist gave me certain exercises to do. I think I
need to find some aquatic therapy.
Janet

Hi everyone - I recently started taking Humira and was wondering if
any of you experienced buring with the injection? I had taken
Enbrel for awhile and never had any difficulties with adminstering
it. The Humira needles seem to be thicker than the Enbrel and don't
break the skin as easily. Plus, it burns like a you know what
during the injection and for about 10 minutes afterwards. Then I'm
fine. Had this been anyone elses experience and are there any
suggestions to help a bit?
Thanks!
Heather

In a message dated 11/25/2004 6:15:13 AM Eastern Standard Time,
mlw402@... writes:
Wasn't it Frank d. who talked about how chronic pain can deplete the
serotonin in our brains and make us very susceptible to depression?
He also was in favor of antidepressants as an aid for pain even if
there was no clinical depression noted. (for newcomers: Frank D is a
pharmacist).
Just a reminder...if anyone is interested in helping Frank out, send me a
message off line...I am preparing to send him a little something to help him get
over this rough spot he is going through.
Rachel

In a message dated 11/24/2004 9:37:24 PM Eastern Standard Time,
fam24@... writes:
My SI joint is also giving me a great deal of trouble. My knees are bad
so
I thought I could try pilates to get some exercise. Just by doing some of
the exercises on the floor, I started getting terrible lower back spasms.
I
tried it twice and same thing. How do you do it with pain?
Janet
Hi Janet, I don't know if I could have done pilates without first going to
physical therapy. I was in too much pain. I don't know if you remember but I
am not eligible for the biologic drugs, and really didn't want to take MTX
because alcohol is a big part of my job, so when my rhemy and I were
discussing treatment options, she recommended aggressive PT to get back my
strength.
I went to a PT clinic at a hospital and saw an arthritis specialist. They
scheduled me 4x a week for the first 2 months...2 days of water therapy, one
day for my back and one day for my hands. The combination of all of those
things helped me regain some strength and some flexibility, and then they
recommended that I do pilates once my PT was over. So I think, from what you
are
saying with the spasms, you may need to do some "pre-work!"
Not many of us who post here seem to talk about physical therapy, and I
realize my rheumy is more progressive than most (she treats a lot of fibro and
other unidentified chronic fatigue), but PT was a miracle for me. Its also a
big part of how they treat PA and RA in Europe. The easiest thing to do when
you are in pain is nothing, but its the worst thing you can do for your
body....sitting around makes you more stiff, which just increases the pain.
When
I went to PT, my rheumy told me to tell them my goal was "self
management"...so the therapists were great and showing me exercises I could do
on my own.
A lot of the exercises that they give you to help your back are not very
different from the types of things you do in pilates, and they recommended
pilates as a way to stay disciplined about the exercises once PT is done.
Good Luck!
Rachel

Jane, Miana Elizabeth will forever be in your hearts and souls as a peaceful
feeling that will wash over you when you need it most. You have my heartfelt
sympathies.
annie and the pugherd

Hi Soheila,
David E. Trentham, M.D.
Beth Israel Hospital - Dept. of Rheumatology
330 Brookline Ave.
Boston, MA 02215
P: 617-632-8658
Chris.

Dear Annie, it's no problem at all to resend you the pain tips. I hope
they help your friend deal with guilt. I have that problem myself. I wish
I could tell you I was flying high, but I actually just got up and its
almost 5PM...lol. I think the past 4 days have finally caught up with me.
I was so tired today there was no way I could get out of bed. I kept trying
and falling back asleep. I'm doing ok now, but sure wasted the day. Take
care and I hope these help. Love, Fran
PS I sure don't miss the winter in Indiana, but I did love the fall.
Tips for Dealing With People in Pain
1. People with chronic pain seem unreliable (we can't count on ourselves).
When feeling better we promise things (and mean it); when in serious pain,
we may not even show up. Pain people need the "rubber time" (flexible) found
in South Pacific countries and many aboriginal cultures.
2. An action or situation may result in pain several hours later, or even
the next day. Delayed pain is confusing to people who have never experienced
it.
3. Pain can inhibit listening and other communication skills. It's like
having someone shouting at you, or trying to talk with a fire alarm going
off in the room. The effect of pain on the mind can seem like attention
deficit disorder. So you may have to repeat a request, or write things down
for a person with chronic pain. Don't take it personally, or think that they
are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't
normally bother you may seem too loud or glaring.
5. Patience may seem short. We can't wait in a long line; can't wait for a
long, drawn out conversation.
6. Don't always ask "How are you?" unless you are genuinely prepared to
listen - it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very
temporary). When in pain, a small task, like hanging out the laundry, can
seem like a huge wall, too high to climb over. An hour later the same job
may be quite okay. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates
after a short rest. Chronic pain people appear to arrive and fade
unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or a comfortable
chair, is as important as knowing where a bathroom is. A visit is much more
enjoyable if the chronic pain person knows there is a refuge if needed. A
person with chronic pain may not want to go somewhere that has no refuge
(e.g. no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in
pain. Your offer of a pillow or a cup of tea can be a really big thing to a
person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a
body-wide feeling of discomfort, with hard to describe pains in the entire
back, or in both legs, but not in one particular spot you can point to. Our
vocabulary for pain is very limited, compared to the body's ability to feel
varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still
limited in its understanding of pain. Many people have pain that is not yet
classified by doctors as an officially recognized "disease". That does not
reduce the pain; it only reduces our ability to give it a label, and to have
you believe us

In a message dated 11/23/2004 6:05:12 AM Eastern Standard Time,
claesch@... writes:
Rachel,
What are pilates and what is a balance ball chair?
Hi Carla, sorry its taken me a few days to write back, I spent some time out
of town for the holiday.
Pilates is a form of exercise that was recommended by my physical therapist.
It focuses mainly on building up strength in your core muscles (mainly the
abdominals in your stomach) as well as on general spinal health. It is very
modifiable, and my instructor is good at knowing when I won't be able to do
an exercise and giving me a modification. Most of it is done on a mat on the
floor, so there is very little "weight bearing" going on, its mainly
resistance work. For me, it has kept my joints flexible and strengthened the
muscles
that support the spine, so it has really helped keep my lower back pain
free. One of the benefits is that the exercises actively promote fluid
retention
in between the vertebrae, which lessens the pain and stiffness.
The balance ball chair is a cradle on wheel that holds one of those exercise
balls. So I sit on the ball but don't roll around all over the place:-)
Since it is still a ball vs a flat seat surface, your body has to work to stay
fully upright, and the constant slight movement keeps the spine fluid vs.
compressed as it would be sitting on a flat surface. A physical therapist in
Germany recommended it to me, and it has been great. Takes a bit to get used
to, but I have NO back pain when I sit on it for 8 or so hours...The one I got
was from the Gaiam catalogue (_www.gaiam.com_ (http://www.gaiam.com) ) and
cost $80.
Good Luck!
Rachel

Karen,
I ussually don't share this info with people but a little over a year
ago, I had called the abuse hotline, my boss at the time called me in
to help me get set up with them. I filed a police report but
unfortunately the abuse was emotional to myself and my kids. Becuase
of that the police could not really do anything. I also loved him and
knew he loved me but he had a temper and his words could hurt
terribly.
That day I prepared the kids that when I picked them up from school
we would probably go to a shelter. They were upset but ready becuase
they didn't want to deal with this anymore.
My husband stayed home from work that day. I said to my self that
this is it, it is not fair for me to just disappear with his kids
when I know there is love in his heart. He also was not aware of the
effect his anger had on us. I figured now was the time to tell him.
So I went home and told him I went to the police to file abuse
charges. I said our children are afraid of you and so am I. He argued
that he never hit us. I said you don't have to hit to hurt. He was
mad that the school people I work with knew and the police. When I
got the kids we all sat down. I made each child tell him exactly what
he made them feel. They told him of the hurt and fear they felt.
He listened, denied, was defensive. He wanted them to say I love you
to him, and I said that love is something you have to earn back. In
the end, he thought alot and talked to people at church. He has
calmed his ways and now thinks before opening his mouth.
He and I also talk alot about frustrations, anger, love, and support.
It hasn't been easy. Once the cat was out of the bag, and others knew
what was happening he realize that if things didn't change we were
gone.
He is now a very loving supportive husband and father. It happened
slowly over time. I am glad I didn't leave. I am glad we are
rebuilding a good relationship built on honesty and truth. As my
disease is worsening, he is trying to be there more and more.
We understand that many times we say things out of frustration, pain
and loss. If that happens all of us know we can say, that hurt my
feelings. I think the turning point was that he realized that others
outside the family knew what was happening. He couldn't turn it
around onto me anymore. It was scary for me to confront him with what
I did, but I now no it was for the best.
I also know there are some men that won't change. There are some that
don't take responsiblity for their actions. We all have to take
responsibility for our actions. We all have to admit the mistakes we
make and how we can do things better. I have learned that pain is no
excuse to be mean or hurtful. Chronic pain gives us the opportunitiy
to share feelings and to ask for help but not demand. We share our
little accomplishments and joys, and laugh at our incompetencies at
times.
I know the decision I made that day is not right for everyone. I am
blessed it