First on the scene are two book reviews:

An excerpt from How to Be Sick: A Book Review:

“At first glance, the title appeared misleading; it seemed quite opposite to a focus of wellness and positive thinking. Why would someone want to learn how to be sick? Everyone wants to be healthy! On the contrary: How to Be Sick, by Toni Bernhard, is a how-to book on wellness; it is a Buddhist-inspired approach to living with chronic illness, focusing on helpful mechanisms to release the patient—or anyone seeking the pursuit of better health and peace of mind—from counterproductive habits that inhibit the ability to thrive, despite dis-ease. It is a wellness guide, not an overtly religious or spiritual tome by any means. Its life lessons with Zen-like overtones; part memoir championing the caregiver, and the peace that is attainable from within…”

An excerpt from Stress Free for Good, a Book to Live By Book Review:

“…The first LifeSkill discussed in the book is a primary, life-sustaining call to action: Breathe; breathe correctly and from the belly.  There is good reason they included this first in the book. If this was the only thing they addressed in stress reduction, many can be significantly altered for good.  Through the simple, easy-as-pie instructions on belly breathing, many may discover they have been denying their body oxygen for years.  Halting full inhalation is a stress symptom and can accompany chronic pain, as the body deals with it…”

Please enjoy the articles on the Recommended page offering helpful information.

Please visit our Awareness Page for our new and improved, web campaign-in-a-box, along with the following for Rheumatoid Arthritis information:
“How Do We Spell Pain? S-T-O-P”
“Rheumatoid Arthritis is NOT for the Faint of Heart”
“Chemo & RA” Page, for an in-depth research article VISIT THE THRIVE WITH RA™ AWARENESS STORE!

With the exception of excerpts quoted from How to Be Sick, by Toni Bernhard and the reference to the children’s book title, The Little Engine that Could by Watty Piper, as well as quoted text from Stress Free for Good by Dr. Frederic Luskin and Dr. Kenneth R.,  text, Rheumatoid Arthritis Awareness Ribbon Campaign-in-a-box, Media That Matters™ and Thrive With RA™ logos © 2011, 2012, Thrive With RA™; all rights reserved.

In this November 11, 2011 MayoClinic.com article(1), a question was posed:

“What causes rheumatoid arthritis to develop?

“As with many diseases, the causes of rheumatoid arthritis appear to be a combination of genetic and environmental factors. The genetic factors that affect the development of rheumatoid arthritis cannot be changed. But the environmental factors can. For example, the most critical lifestyle change a person can make to reduce the risk of developing rheumatoid arthritis is not smoking.”

This is a favorable development in assessing the root cause of Rheumatoid Arthritis factoring in genetics more definitively than before.  As recently as 2010, the medical community was even less certain about genetics playing a role in Rheumatoid Arthritis, despite the growing numbers of cases of patients demonstrating the pedigreed proof.

Regarding tendency toward autoimmune disease, the Mayo Clinic states in their January 5, 2011 article(2), “The adult lifetime risk in the United States of having some kind of inflammatory autoimmune disease is 8.4 percent for women and 5.1 percent for men.  Based on year 2000 population figures, that means one woman in 12 and one man in 20 will develop one of the conditions in their lifetime.”

For Rheumatoid Arthritis specifically as a lifetime risk, the Mayo Clinic confirms in this article that “3.6% or 1 in 28” in women and “1.7% or 1 in 59” in men will have RA at some point.  Providing a visual to quantify this further, if an RA patient were well enough to attend a movie in a standard theater that seats 950 people, the potential for 33 other women, or 15 other men in the audience also sharing the RA journey in their lifetime exists.  That’s a lot of people.  Knowing that RA is an “invisible illness” for the most part, makes the likelihood of anonymity in chronic illness reduced from a vast pool of strangers to possibly thirty-three others just like ourselves in a particular environment considerably more shocking.

If the medical community would want further data to support genetics playing an integral role in Rheumatoid Arthritis, ThriveWithRA.org shares a living, breathing, personal example:

Identical twin sisters over 40 years in age share in sisterhood and a pro-fitness, smoke-free, alcohol-free, drug-free and even coffee-free lifestyle; however, they didn’t envision sharing similar health challenges of chronic illness.  One of the twins suffers from and survives Cancer and invasive surgery, only to be diagnosed with Rheumatoid Arthritis after two years of exploration of inflammatory symptoms.  Within months, the other twin begins showing similar inflammatory illness symptoms and awaits diagnosis.

How is this NOT definitively genetic?

The Mayo Clinic continues, “While your genes don’t actually cause rheumatoid arthritis, they can make you more susceptible to environmental factors — such as infection with certain viruses and bacteria — that may trigger the disease.”(3)

There have been several cases in the media of autoimmune disease patients indicating a virus as part of the onset of chronic illness, the author of Thrive With RA™ being one of them.  What is the common factor between genetics and incurring a virus?  Always with genetics and most often with viruses, neither can be helped; both are almost always out of our control.  What is within our control is how we choose to thrive, despite chronic illness and how we choose to share awareness of the disease, to secure a cure.

As the world becomes more aware of the rather large incidence of autoimmune disease patients and Rheumatoid Arthritis patients specifically, along with more fully addressing disease causes, improvements in therapies and a more ardent dedication in the quest for a cure, we can all feel a little bit better about all of the many unknowns still ahead of us, lurking beneath the surface in the deep end of the pool.

(1) http://www.mayoclinic.org/medical-edge-newspaper-2011/nov-11b.html
(2) http://www.mayoclinic.org/news2011-rst/6137.html
(3) http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020/DSECTION=causes

Please visit our Awareness Page for our new and improved, web campaign-in-a-box, along with the following for Rheumatoid Arthritis information:
“How Do We Spell Pain? S-T-O-P”
“Rheumatoid Arthritis is NOT for the Faint of Heart” “Chemo & RA” Page, for an in-depth research article VISIT THE THRIVE WITH RA™ AWARENESS STORE!

Text, Rheumatoid Arthritis Awareness Ribbon Campaign-in-a-box and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved. Photo courtesy of Dino De Luca of freedigitalphotos.net; used with permission.

M–Motivator
O-Orchestrator
T-Therapist
H-Heart
E-Educator
R-Referee

These attributes or qualities apply to this divine charge no matter how physically capable or challenged we are.  At times as patients, we may feel discouraged we can no longer participate in some of the physical aspects of parenting—perhaps even basic necessities of daily living.  Because of this, we may feel our identity as a mother is slipping away.  After all, doesn’t nurturing—a basic tenet of motherly care—require the ability to pick up our child and hold him or her closely?  While nurturing can be perceived as a physical act, it is even more so an emotional one, which does not require boundless energy, or pliable, sturdy arms.  What we need to remind ourselves is that twenty-four/seven, in sickness and in health, this badge of honor is ours to boldly, prominently wear with unabashed pride; it can’t be taken from us, even if our misshapen fingers would debate their grip otherwise.  Perhaps our level of wellness may be minimized, but our role as a mother can never be diminished.

All of these characteristics of mothering can be done ably and strategically from a couch or bed—yes, even refereeing.  Motivating is all about the pep talk.  Encouragement though conversation is something we can all do—animating the voice can be very effective, and calms nerves if comedic.  Orchestration is the art of direction.  How many “backseat drivers” are there?  They call the shots and they’re bound; we can do one step better at home with our family.  Therapy comes in all forms, including written, in addition to verbal.  Writing a letter to a child is supportive, and very possible, even for those mothers who are unable to write or type—love notes in a school lunch come to mind, or a quick text message or email to an adult child to wish them a fabulous day.  Heart is the soul of the mom.  Even without the body, healthy or otherwise, the heart stops the busiest of children’s feet rushing by, right in their tracks.  Saying, “I love you,” is as easy as pie and makes everyone’s day.  Education, especially one-on-one teaching moments about life are relationship-builders; adult children are also apt to listen.  Sitting side by side on the couch discussing what matters most makes all the difference in training a child, even sharing with a grandchild.  When one thinks of refereeing, soccer fields and shin guards may work their way into the definition.  Have no fear, the art of the couch-bound referee only requires voice and presence.  If things get really out of hand, requiring establishing a barrier between two or more of your children, then perhaps making a scene of your own will pause the chaos.

The beauty of these graces is that they come from the mind, and more importantly, the heart.  The gift of the mind is a powerful force for good within the walls of a home; it teaches, influences, responds.  The heart is unequivocally necessary.  It sets the tone of harmony, of forgiveness, of security, of charity— or pure love.  Being able to run a marathon is not needed for a healthy heart in regards to motherly love.  “A mother’s love is patient and forgiving when all others are forsaking…” the poet laureate, Helen Rice once said.  While we may feel impatience with ourselves in dealing with the bad that comes with living with systemic disease, as mothers, our inherent abilities to listen, to care, and yes indeed—to nurture—are there for us, deep within that well of personal strength, ours for the giving, and our children’s for receiving in abundance.  With open arms, whether metaphorically or by active demonstration, embracing the true calling of being a mother is undeniably ours, to have and to hold.

HAPPY MOTHER’S DAY!
To all of the women who parent, nurture, teach and care for children and grandchildren of all ages, everywhere, here’s a heartfelt wish for your special day!

Please visit our Awareness Page for our new and improved, web campaign-in-a-box, along with the following for Rheumatoid Arthritis information:
“How Do We Spell Pain? S-T-O-P”
“Rheumatoid Arthritis is NOT for the Faint of Heart” “Chemo & RA” Page, for an in-depth research article VISIT THE THRIVE WITH RA™ AWARENESS STORE!

Text, Rheumatoid Arthritis Awareness Ribbon Campaign-in-a-box and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved.  Photo courtesy of David Castillo Dominici of freedigitalphotos.net; used with permission.

Two years ago, ironically in May—Rheumatoid Arthritis Awareness Month—Rheumatoid Arthritis became a part of my life in the form of a severe case, four generations in the making.  It has been a very personal journey for me and my family, replete with opportunities for me to choose.  Many choices have seen success—even if only temporary—some, not so much.  Some choices have been what many would consider perilous, in terms of options to consider in prolonging life, or even preserving life.  Equally disheartening, decisions have been weighed and measured for enhancing the quality of life and choice to live as full a life as possible.  Many of these considerations to be more engaged in the world, despite disability require many movements and processes which can cause further pain and mobility issues, including even the simple act of getting out of bed after a night of fitful, painful sleep.

Life since and with RA has been a lesson in working toward being okay with being less in control of situations and outcomes—this has been one of the most difficult.  This journey has also been a lesson in trust.  Rheumatoid Arthritis has also been a lesson in the beauty of choice, even in tumultuous times.

I made the choice to thrive with RA from the very beginning.  It’s been two years of choices, many of which are entirely focused on physical preservation, but also on refinement of self, inwardly.  I made the choice to continue to improve and to move onward and upward.  It’s not always easy, but the beauty of choice is that we can amend when necessary.  Two steps forward, one step back is still moving forward. 

Perhaps my onset occurring in May of all months gives me credence to do my best to be a herald of sorts for Rheumatoid Arthritis Awareness and the power of choice to thrive with RA. The beauty of choice is that some will choose to listen, and some will choose not to—and that’s okay. I can choose to focus on what I can no longer do, or I can choose to focus on what I can still do, or even learn to do for the first time!  I can choose to think positively, which I do, as it improves my symptoms, or at least helps me to cope better with them.

Like any challenge or trial, physical or otherwise, it’s all about free agency.  It’s all about that moment of choice in how a person rejects and abhors it, or accepts, adapts, embraces and grows with it to become a stronger, better person for that hopeful effort.

I chose to strive to be positive and thrive with RA. I continue to do so, every day.  So very many Rheumatoid Arthritis champions have made this same choice.  Your examples are truly inspiring!

Please visit our Awareness Page for our new and improved, web campaign-in-a-box, along with the following for Rheumatoid Arthritis information:
“How Do We Spell Pain? S-T-O-P”
“Rheumatoid Arthritis is NOT for the Faint of Heart” “Chemo & RA” Page, for an in-depth research article VISIT THE THRIVE WITH RA™ AWARENESS STORE!

Text, Rheumatoid Arthritis Awareness Ribbon Campaign-in-a-box and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved.

Feel free to copy and paste this easy-to-read RA Awareness Campaign-in-a-box web graphic in a personal, nonprofit email message for RA Awareness, or use for review for talking points in person or over the phone.  Together, we can make a difference!

Information in the campaign was gathered from the following sources:
The Mayo Clinic
The Arthritis Foundation
Centers for Disease Control and Prevention

The RA patient is acutely aware of change.

Change is an integral part of the RA lexicon.  Change in mobility, in CBC and ALT levels, in lifestyle—all are part of the realm of living with this disease.  For some, the change is vast, as they may previously have lived a very active life, physically.  Change in the workplace, or accommodation to function in a profession is often needed.  For others, change involves a horrendous strain on a marriage, relationship or family, as the disruption is so great that many are unprepared for the considerable needs of the patient.  Changing of one’s mind may be the key to a better day, such as making the decision to not overdo, to preserve stamina, or changing one’s mind from sitting-out an activity, to pushing oneself to participate, just so that one may feel more in control and involved in life’s pleasantries, despite the additional pain or fatigue it may incur.

The RA patient is acutely aware of pain as a way of life. 

For those who suffer with Rheumatoid Arthritis, its evil twin is Chronic Pain.  Pain and its management become a concerted effort, as its acute condition can be all-consuming, affecting both the body and emotional state.  Many RA patients can attest that, “four is the new zero” in the pain scale, meaning, since RA onset, a relatively pain-free day feels more like a level of “four” instead of the fondly-remembered, truly pain-free, “zero” from pre-RA days.  Pain is also relative, in that if an RA patient has been enduring a higher level of pain for an extended period of time, they may even “adjust” their pain scale, to reflect their current circumstance.  When someone has been modifying their life around ongoing pain for many years, it’s impossible to accurately compare the before and after, in terms of today’s pain, versus that far-distant memory of, “before RA came upon the scene.”

The RA patient is acutely aware of hope being essential to thrive.

Having hope and enabling a positive outlook has tremendous influence over the ability to cope with change, loss, pain and uncertainty.  Positive Psychology, a legitimate health genre offers tools to consider.  Opening ourselves up to believing in whatever, or whomever we need to—especially ourselves, offers strength to persevere; it could be talking with a loved one or friend, reflection, meditation, prayer, books and other media, counseling, art therapy or a myriad of other mechanisms or methods.  Believing that one can go to bed at night—even with minimal sleep—and wake up the next day to a new beginning is empowering, not to mention vital in contributing to our well of hope, which can build up resilience to feel better, despite challenges.

May is Rheumatoid Arthritis Awareness Month.  As society becomes more aware of Rheumatoid Arthritis and its many nuances—one of which is currently having no cure—perhaps many will become aware of this acute condition and its deadly elements.  May we have greater change for the better in therapies, as well as securing a cure.

Please visit our Awareness Page for our new and improved, web campaign-in-a-box, along with the following for Rheumatoid Arthritis information:
“How Do We Spell Pain? S-T-O-P”
“Rheumatoid Arthritis is NOT for the Faint of Heart” “Chemo & RA” Page, for an in-depth research article VISIT THE THRIVE WITH RA™ AWARENESS STORE!

Text and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved. Photo courtesy of Idea Go of freedigitalphotos.net; used with permission. 

A vast majority of RA patients suffer from FATIGUE on a daily basis.  This is not a minor issue or the same as what healthy individuals occasionally face with temporary illness, but a complication of the RA disease itself, usually associated with Chronic Pain.

Tell-tale signs of FATIGUE connected with RA are a frequent state of weariness and tiredness, or “unrelenting exhaustion”(1), per the Mayo Clinic.  According to the Johns Hopkins Arthritis Center, “FATIGUE is common in all patients with an inflammatory arthritis such as psoriatic arthritis and rheumatoid arthritis. It is likely multifactorial. Medications, lack of mobility and exercise, sleep disturbance, chronic systemic inflammation and in some cases depression can all play a role.”(2)

If the FATIGUE is not associated with an underlying illness or disease, such as RA, it could be a separate syndrome of its own: CFS, or Chronic Fatigue Syndrome(3). Like RA, there is no confirmed cause of CFS; although, like RA, it is believed that viruses could be a cause.

Getting out of bed to face the day can be especially difficult for Rheumatoid Arthritis patients, as rest may not be sufficient to overcome fatigue, due to poor sleep, pain and mobility issues from this autoimmune disease.  FATIGUE is more than just sleepiness; it adds complications to the already-compromised physical strength and emotional health of the patient, providing additional challenges to overall wellbeing.

Understanding that FATIGUE is not laziness, but a physiological symptom that can be caused by a chronic, systemic disease, such as Rheumatoid Arthritis is an important step in appreciating the many trials that RA patients face every day.  Improving FATIGUE symptoms may be possible through exercise tailored for RA patients’ needs and limitations.  According to the Johns Hopkins Arthritis Center, “…regular physical activity has been shown not only to improve some arthritis symptoms (e.g., fatigue, pain, mood) but also to promote general health.”(4)

Even with healthy individuals, the Flu or a Sinus Infection can lay the groundwork for FATIGUE to set in.  Now imagine having the Flu 24/7, 365 days per year, combined with FATIGUE at chronic levels, along with Chronic Pain and serious strength and mobility problems, perhaps also with permanent deformity and disability, and the reality of Rheumatoid Arthritis begins to clarify.  FATIGUE is but one of the many wellness battles RA patients face; its effects warrant attention and understanding.

Resources:

(1) http://www.mayoclinic.com/health/fatigue/MY00120/DSECTION=causes

(2) http://www.hopkins-arthritis.org/ask-the-expert/clinical-020002/psoriatic-arthritis-and-fatigu-811.html

(3) http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395

(4) http://www.hopkins-arthritis.org/patient-corner/lifestyle_activity.html

(Originally published, October 16, 2011)

Text and Thrive With RA™ logo© 2011-2012, Thrive With RA™; all rights reserved.  Photo courtesy of m_bartosch of freedigitalphotos.net; used with permission.

Every day, RA patients muster up their courage to get out of bed—some requiring assistance to do so, as pain is involved.  For some, the pain level is excruciating for this task, possibly all tasks, all movement, all of the time.  Courage is required in taking medication that is meant for stabilizing the disease, yet on its own is drastically caustic, such as Methotrexate—which is chemotherapy.  Choices are made every day that require courage, as well as hope for a positive outcome.  For instance, the choice to deter liver failure from escalating ALT levels from taking Methotrexate may be favored over the possible hindrance of the disease escalation that this chemo drug is intended for.  Choosing the, “lesser of two evils” is a daily occurrence when living with chronic illness.

When RA patients suffer a flare—which is an escalation of the symptoms of the disease, often resulting in a surge of additional pain, inflammation and in some cases—deformity and disease progression, striving for courage to endure requires a whole new level of inner strength and perseverance.  An RA patient does not know the outcome of such an ordeal; sometimes it can be downright scary.

Courage does not mean one is not afraid or cannot fear.  Courage is the ability to press forward and brave the outcome.  Like jumping through a wall of fire to save your life, or the life of someone you love, courage is necessary.  For this, Courage Under Flare™ is a fitting tribute to all RA patients who face this challenge.

Text, Courage Under Flare™ and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved. Photo by twobee of Freedigitalphotos.net; used with permission.

Your purchase helps promote RA awareness globally.  Products include clothing—for both humans and pets, home and office goods, jewelry and other tasteful merchandise with coordinated colors, emblazoned with our exclusive, custom designs.  Additionally, each product detail reflects information about the challenges many RA patients face in day-to-day use of the particular item in our store, promoting even greater awareness of this disease.

Please check back often at zazzle.com/thrivewithra* for new additions and designs.

Rheumatoid Arthritis/RA: is a chronic, systemic disease; is an auto-immune disease; attacks the body’s tissues and linings of joints; causes chronic pain, weakness and inflammation; can cause severe disability; can cause permanent joint and organ damage; does  not  have a cure; affects 1.3 million Americans and an estimated 1 to 2% of the population worldwide; does not have a confirmed cause; affects 2-3 times more women than men; can occur at any age, but generally age 30-60; shortens life span; can cause deaths from RA-related causes; is consistent only in its inconsistency in onset, severity and response to therapies between  patients.  RA is not the same as the more common Osteoarthritis/OA, which is not an autoimmune disease and seen more often in the elderly.

Text, Rheumatoid Arthritis Awareness Ribbon Campaign image and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved.  

This dissuasion could apply to any number of things, such as a computer programmer by day is trying to launch a new career as a stand-up comic at night – perhaps the jokes are falling a bit flat, to stir up such an unsupportive word of caution. In another scenario, a woman who is a Biochemist by day, wants to quit work and become a stay-at-home mom. In this case, the “Don’t quit your day job” warning would never be appropriate, because there is no rulebook or textbook or crash course to prepare someone for parenthood in any employment situation. Nobody would dare try to come up with a hard and fast set of comprehensive requirements for “passing” or “failing” at parenthood. With Chronic Illness, it’s the same set of unknowns.

There are no training courses or certifications, no webinars or podcasts, no how-to books or seminars to prepare someone’s individual circumstances for living with this surprise challenge in life. The same goes for enduring it. Like hearing the horror stories of other parents’ experiences, as well as the triumphs – often by mistake along the way, the outcome of living with Chronic Illness – and doing it “well” – is only as good as anyone’s guess.

We can’t be fired from our fulltime job of enduring to the end. While one may hope to receive a promotion – in the form of reduced pain and slowing of the disease – many find that they are dealt a de-motion instead, followed by complaints from co-workers, aka family and friends, who deem our response to the disappointment, “unsatisfactory,” requiring a stern, figurative write-up on our performance, inciting further negative feelings and discord.

The lucky ones receive a stellar review, allowing for a commendation for even the bad days that accompany the good, as we were doing our best. Those are the kudos worth remembering, if one even cares about how others perceive how they are faring in life. Regardless, the praise for a “job well done” is well-deserved in any case of living with daily pain and life-threatening disease.

So, while we’d like to take an infinite sabbatical from illness, for the time being, let’s consider just how well we rock this career we didn’t interview or apply for, 24/7, 365 days per year! Bonuses all around!

Text and Thrive With RA™ logo © 2011-2012, Thrive With RA™; all rights reserved. Photo by Michal Marcol of Freedigitalphotos.net; used with permission.