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Rheumatoid Arthritis Guy: Books On My Nightstand

I look forward to writing more about the following books in upcoming blog posts! What RA/chronic pain/health and diet related books are you reading right now?

 

A Resilient Life: Learning to thrive, not just survive, with rheumatoid arthritis
Kat Elton, OTR

Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease.
More Info: http://www.amazon.com/Resilient-Life-Learning-rheumatoid-arthritis/dp/0615289231

 

Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better
Seamus Mullen

Mullen was diagnosed with rheumatoid arthritis five years ago, and in that time, he has discovered how incorporating 18 key ingredients into his cooking improved his quality of life. In Hero Food, he shows how to make these key ingredients, or “hero foods,” your cooking friends; they can be added to many dishes to enhance health and flavor. Hero Food is divided into four sections, each devoted to a season. Each season is introduced with a richly imaged “movie,” providing the context of Seamus’s life and the source of many of the imaginative and beautiful recipes contained in each seasonal section. Seamus’s “heroes” are real food, elemental things like good meat, good birds, eggs, greens, grains, and berries. He cares about how his vegetables are grown, how his fruit is treated, and about the freshness and sustainability of the fish he uses. His hope is that you will eventually forget about why these recipes are good for you, and that you’ll make them just because they taste good.
More Info: http://www.amazon.com/Seamus-Mullens-Hero-Food-Delicious/dp/1449407587

 

Our Hands Can! A Show Us Your Hands! Photo Book Project
Show Us Your Hands!

The Our Hands Can! photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis. All funds raised from the sale of these books go to Show Us Your Hands!, an international awareness movement which serves to unite and inspire the inflammatory arthritis community.
More Info: http://www.blurb.com/bookstore/detail/3205952

 

Listening to Pain: Finding Words, Compassion, and Relief
David Biro

Here’s a pain medication you can’t get at the pharmacy. Biro, an M.D. with a Ph.D. in literature from Oxford, asserts that language itself can alleviate pain—particularly its daunting power to isolate and silence. Illness and especially pain give rise to a wall that separates a person from the world, because pain literally leaves us speechless, Biro finds. What sufferers must do, he asserts, is find the words and images to describe what nobody else feels in exactly the same way. We need to think like Joyce and Tolstoy, Biro declares, and search for metaphors that are universal. His thoughtful, lyrical challenge is, in essence, a study guide to some of the last century’s most powerful writers, their metaphors of pain and suffering parsed and pondered. Biro even turns to evocative artist Frida Kahlo to illustrate the look of pain (portraying herself as a wounded deer, for example). And here’s why we should pay attention to Biro’s difficult, complicated lesson: as long as the conversation lasts, we are not alone.
More Info: http://www.amazon.com/Listening-Pain-Finding-Compassion-Relief/dp/0393340252

 

Enemy Within: A memoir of strength, determination & acceptance
Karen Ager

“I’ve thought a lot about my first IV infusion; about the isolation of disease and the loneliness of the moment when the sickly green curtain is pulled across and you’re shut out from the rest of the world. It’s a moment of no control; when there’s not much choice anymore, just a road map of what you have to do and a landscape of obstacles to overcome.” (From Enemy Within) To the world around her, a young Karen Ager had an enviable life and future ahead – model looks, a killer body and an outgoing personality. But unknown to everyone, including Karen, she was carrying a crippling disease that would change the course of her life completely. Diagnosed with an aggressive form of joint-destroying rheumatoid arthritis (RA) at 17, Karen Ager was told she would spend her life on an invalid pension, unable to accomplish anything due to the constant pain she would suffer. Now 45 years old, Karen enjoys a full life. She married the man of her dreams, teaches grade school children full time, exercises and advocates tirelessly for the millions who suffer from rheumatoid arthritis. In the new book, Enemy Within, Australian Karen Ager shares her inspirational journey of personal suffering at the hands of fate, refusal to accept defeat and the discovery of a hidden gift that gave her a new purpose.
More Info: http://www.amazon.com/Enemy-Within-strength-determination-acceptance/dp/1741108500

 

Keeping A Secret: A Story About Juvenile Rheumatoid Arthritis
Elizabeth Murphy-Melas

Why can’t Jennifer play soccer or jump rope? Any child with a chronic disease will relate to this young girl coming to terms with her diagnosis and treatment of juvenile rheumatoid arthritis, and the manner in which she shares this news with her friends. “Learning to cope with the pain of arthritis. This problem affects over 43 million Americans of all ages. Children with arthritis face more issues than just dealing with their pain. In Keeping a Secret, Elizabeth Murphy-Melas helps children understand their symptoms and cope with the consequences of juvenile rheumatoid arthritis (JRA). This is a thoughtful and engaging story of one girl’s journey from diagnosis to treatment to the recognition of the importance of supportive family and friends. Ms. Murphy-Melas has given a gift to children and their families living every day with JRA.” (Helene Belisle, Executive Director, Arthritis National Research Foundation)
More Info: http://www.amazon.com/Keeping-Secret-Juvenile-Rheumatoid-Arthritis/dp/0929173341

 

Pain: The Science of Suffering
Patrick Wall

Pain is one of medicine’s greatest mysteries. When farmer John Mitson caught his hand in a baler, he cut off his trapped hand and carried it to a neighbor. “Sheer survival and logic” was how he described it. “And strangely, I didn’t feel any pain.” How can this be? We’re taught that pain is a warning message to be heeded at all costs, yet it can switch off in the most agonizing circumstances or switch on for no apparent reason. Many scientists, philosophers, and laypeople imagine pain to operate like a rigid, simple signaling system, as if a particular injury generates a fixed amount of pain that simply gets transmitted to the brain; yet this mechanistic model is woefully lacking in the face of the surprising facts about what people and animals do and experience when their bodies are damaged. Patrick Wall looks at these questions and sets his scientific account in a broad context, interweaving it with a wealth of fascinating and sometimes disturbing historical detail, such as famous characters who derived pleasure from pain, the unexpected reactions of injured people, the role of endorphins, and the power of placebo. He covers cures of pain, ranging from drugs and surgery, through relaxation techniques and exercise, to acupuncture, electrical nerve stimulation, and herbalism. Pain involves our state of mind, our social mores and beliefs, and our personal experiences and expectations. Stepping beyond the famous neurologic gate-control theory for which he is known, Wall shows that pain is a matter of behavior and its manifestation differs among individuals, situations, and cultures. “The way we deal with pain is an expression of individuality.”
More Info: http://www.amazon.com/Pain-Science-Suffering-Maps-Mind/dp/0231120079

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ArthritisID: Comprehensive Free Arthritis App For Consumers


ArthritisID is the most comprehensive free arthritis app for consumers, featuring the most current, evidence-based arthritis information to help detect, treat and manage arthritis.

ArthritisID includes:

  • Screen for arthritis – ArthritisID’s interactive arthritis screening tool and questionnaire will help you determine indications of a type of arthritis
  • Understand arthritis better – ArthritisID features treatment strategies and medication information for: osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, lupus, gout and juvenile idiopathic arthritis (kids get arthritis too!)
  • You can trust ArthritisID – the most current, evidence-based information on prevention of arthritis, as well as information about exercise, diet and nutrition
  • Save it! ArthritisID lets you save past arthritis screenings, or those of friends and family
  • Share it! ArthritisID lets you send important arthritis information and resources by e-mail from the app directly to those who need it
  • Connect to the North American arthritis community through social media networks and access more resources
  • Thoughtful functionality – ArthritisID does not require an internet connection to operate, and the text size can be custom adjusted to suit your preference
  • Unlimited free access to all features – all materials are available in English AND French. There are no subscription fees or hidden costs

ArthritisID was developed and written by two of North America’s leading arthritis research and patient advocacy organizations – the Arthritis Research Centre of Canada and Arthritis Consumer Experts.

ArthritisID also has a free companion app for healthcare professionals, called ArthritisID PRO, which has additional features.

More Info: http://bit.ly/GetArthritisID

Arthritis is cured! (if you want it) Among the top three chronic diseases in Canada, arthritis is actually a group of more than 100 diseases. One in six Canadian adults has arthritis – that’s nearly 4.5 million people – costing the economy billions of dollars per year. It’s time Canadians got talking about arthritis.

In 2009 – 2010, Arthritis Consumer Experts (ACE) and The Arthritis Society of Canada, created the first comprehensive national arthritis awareness program in Canada. With the program slogan “Arthritis is Cured! (if you want it)/Guerir l’arthrite! (la solution vous revient),” the NAAP positively promoted interest and conversation about arthritis with the public and healthcare professionals, providing greater insight into the severity of the disease and information on how to access the arthritis information and support network. Read more at: http://www.arthritisiscured.org/.

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House Flame Derby Walking Cane

I think this is going to be my next walking cane. It’s not so much the fact that this is a replica of the cane used by Dr. House on the television show that interests me; what attracts me the most are the really cool flames!

This cane was previously available only with a ‘tourist’ (rounded) handle, which would have never worked with my arthritic hands. It now seems, though, that it is also available with a more ergonomically correct ‘derby’ handle.

From the website selling this cane: “The derby triple wound carbon fiber flame cane uses the same design as Dr. Gregory House on the hit television series House M.D on Fox. The flames on this cane are built in the shaft, making the flames last the entire life of the cane. By using super strong, triple wound, carbon fiber, the cane will weigh next to nothing but is sure to last for years to come! Be sure to get one of these ‘cool’ canes while they’re ‘HOT’!”

More Info: www.fashionablecanes.com/Dr-Gregory-House-Walking-Canes

P.S. You know you have rheumatoid arthritis when you get really excited about blinged-out walking aids!

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Take Me Home From The Oscars: Arthritis, Television, Fashion, And Me

Okay, I’ll admit it: I have a penchant for fashion. Maybe it’s because as a designer (architecture, graphic, and web), I have an appreciation for all things design related. Many people are familiar with Frank Lloyd Wright’s architectural masterpiece Fallingwater, but few people are familiar with the fact that he actually dabbled in clothing design. One of my favorite contemporary architects, Zaha Hadid, has a trademark style that can easily be (and has been) applied to buildings, dresses, or shoes alike. (If you’re not already familiar with her, take a quick look here!)

Maybe I like fashion because, at the age of 15, I was an exchange student living outside of Milan. At that time, I was most interested in seeing–with my own eyes–the art and architecture of Italy. I certainly could not ignore, however, the cultural emphasis that was placed on style and design in general, for all items ranging from kitchen utensils to blue jeans. (And when I actually needed new jeans during the end of my year-long stay, Levi’s were out of the question–my host family opted, instead, for Armani and Trussardi.)

So when I was asked to read a copy of Christine Schwab’s “Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me”, I, of course, welcomed the opportunity to do so. (Don’t worry: even if you don’ have a self-professed interest in fashion, that won’t make reading this book any less enjoyable!)

I must admit, I was much more emotionally moved by this book than I had anticipated, especially during the first few chapters in which Christine recounts the period of time when she knew something was wrong, but had not yet received a diagnosis of rheumatoid arthritis. I too went through an extended period (of almost two years) before I found out what was wrong with my body, why I was in so much pain and why my knees would just suddenly stop working. Many of the thoughts that are written in this book were thoughts that I myself experienced during this difficult time. Thoughts such as: “Deep down I was worried. This felt like something more than just being tired.” and “Something’s wrong with me,” I had to tell my family doctor a day earlier, “I think I picked up a little flu bug from the airplane travel. My body aches all over, hurts when I move, and I’m excessively tired.”

(I too remember those days when I assumed that I just had a really bad flu; funny thing is, this flu didn’t get any better with bed rest…it only got worse…a lot worse.)

I was also quite moved by Christine’s account of the challenges she faced while walking through the streets of New York City. While to some this may be just a minor detail, I have a very personal connection with NYC, having lived there while I was a student at Columbia University. On many occasions, I would just start walking–from 116th and Broadway–until I reached the southern tip of Manhattan…and then I’d take the subway back home. I loved seeing all of the people, all of the lights…but even more that this, I loved to look up as I walked block after block, and take in the sights of all of the tall buildings that surrounded me. (Don’ forget, I was studying architecture at the time.)

I was actually in New York City many years later, walking down Fifth Avenue from the Metropolitan Museum of Art to midtown, when my left knee gave out on me completely. (I had gone up to the Cloisters earlier in the morning, and had started struggling to walk around, more than ever before.) I knew something was wrong; what I didn’t know was that I was just a few weeks away from my official diagnosis of rheumatoid arthritis., i.e. having my world turned upside down.

In this book, the author shares a lot of details about the makeover sessions that she styled for different television shows, during those early years when her RA continued to worsen. We learn about eager out-of-town couples who arrive in New York City, and who are kept apart until their ‘after’ looks are revealed to one another on live television. We don’t just read about the start and the finish of each makeover, however. We also read about all of the small details in between: hair cuts, shopping trips, dentists visits, etc.

By reading this book, readers are able to gain insight into Ms. Schwab’s personal struggles as the pain, disability, and fatigue of rheumatoid arthritis entered into her life (the ‘before’), and of her ability, through the use of will-power, positive attitude, and cutting-edge drugs, to control her disease and go into remission many years later (the ‘after’). And just like the makeovers mentioned above, we read not only about the start and the finish of her personal journey, but also about all of the critical details along the way.

And this is, without a doubt, the most meaningful ‘before’ and ‘after’ reveal that is presented in this book; the one makeover that doesn’t rely on clothes, makeup, and fashion…but that instead relies upon hope, determination, and strength. It’s definitely worth a read.

PRODUCT INFORMATION

Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me
by Christine Schwab

“In Take Me Home From the Oscars, Schwab tells for the first time her story of living an amazing life in television while suffering from rheumatoid arthritis. Schwab recounts with incredible honesty how on the same day she produced and appeared in a major makeover segment for Live with Regis & Kelly in New York and then raced to Chicago to appear on Oprah!, all while balancing medications to ward off the relentless pain that plagued her on-camera and off.  She shares an enchanted evening at the Oscars and the unpredictable arthritis pain that cut it heartbreakingly short.  She re-lives being driven to deceive herself and others in a career that demands timeless beauty and youth.Schwab kept her career alive through determination, deception and hope. In Take Me Home From The Oscars, she takes us behind the scenes in Hollywood and New York, and behind her public persona to the 19-year journey through drug trials and treatment at the UCLA Medical Center. Readers will root for her at every step, and cheer when she ultimately finds remission and her new life’s work as a spokesperson for the National Arthritis Foundation. This is a book of hope for anyone dealing with adversity in their life.”

More Info: http://www.amazon.com/Take-Home-Oscars-Arthritis-Television…

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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