Rheumatoid Arthritis Guy: Books On My Nightstand

/5 Comments/in /by

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

Disclaimer: Review copy. I received one or more of the products or services mentioned above for free. I only recommend products or services that I personally use, and believe will be beneficial for readers of this blog.
5 Comments

Life With Chronic Illness: Is It The End, Or Just The Beginning?

/11 Comments/in /by

Earlier today, as I dropped my sister off at her office so that I could use her car to run some final errands before I return home to South America this coming weekend, I couldn’t help from being momentarily transported back to my last visit here to Columbia, Missouri, which took place a few years ago, back before I had even started writing this blog. And as I drove around, noting that temperatures today would reach the low 100’s as opposed to the low 20’s last time I was here, I couldn’t help from thinking about how my life is such a polar opposite–in so many good ways–from what it used to be.

During my previous visit, I had already been living with rheumatoid arthritis for many years, and while I considered myself to be “experienced” with the challenges that I had to face, I started to realize that my coping skills were not keeping up with the progression of my disease. When it came to my physical life, I had a hard time walking; when it came to my emotional life, I seemed to have no problems sprinting–faster than I could ever imagine–down a very precarious slope into a deep and dark depression. Feelings of the “end of life as I once knew it,” which sprouted immediately after receiving my diagnosis of rheumatoid arthritis years before, grew to the point where I actually started to think that they best way out was, indeed, to end my life.

Needless to say, once I reached this point, I was frightened beyond belief. (Luckily, I was also frightened enough to ask for help.)

And earlier today, as I looked back at this period of time in my life, a time that was so marked with different emotions associated with thinking that my life was nearing some “end,” I couldn’t help but smile now that I am able to see that, in so many ways, it was only just the beginning…

The beginning of embracing and accepting my pain, and not wishing that it would just magically go away.

The beginning of sharing, with my head held up high, the challenges that I face on a continual basis, and no longer hanging my head in silent shame.

The beginning of re-defining what “success” means, and realizing that it has nothing to do with what others think, and has absolutely everything to do with what I think. (And loving the feelings of success that nowadays often accompany seemingly “simple” tasks such as getting out of bed, taking a bath, getting dressed, preparing a meal, etc.)

The beginning of transforming my physical limitations not into reasons why I should berate, criticize, and attack myself…but instead into lessons on how I can be more kind, gentle, and supportive of myself.

The beginning of finally understanding that asking for help makes me strong, and not weak.

The beginning of reminding myself, every time I started to get angry that someone else didn’t understand my disease, that my energy and thoughts were better spent on myself trying to learn something new about my life with chronic illness, something which would allow me to cope even better with the pain and disability.

The beginning of a new awareness that I can happier that I could have ever previously imagined, despite the fact that I have to deal with pain and disability, each and every second of the day…and the genuine hope that continues to carry me forward, which results from knowing that this happiness is more real than anything I’ve ever known before.

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

11 Comments

Continued Happiness, One Minute At A Time

/12 Comments/in /by

image

This past week I spent time in my old college town, also known as New York City. This visit was originally supposed to cap my extended visit here in the United States, but after my mother had a stoke earlier this summer, I changed my travel plans and pushed my return trip back to the end of August. By the time I return home in a few weeks, I will have been away for a total of three months and three days.

The other day I was telling a close friend that this will always be “the time I traveled non-stop for the entire summer and lived out of a suitcase.” What I didn’t say at the time, but was thinking to myself, was that this will also always be the time that I firmly feel like I’ve gained the upper hand when it comes to living with rheumatoid arthritis…and if there is such a thing as “conquering” this disease, I feel like I have done so.

Strong words, coming from a person who was (once again) almost completely immobilized by a sudden flare just a few short days ago. I can say, however, that I have truly learned that the secret of success has nothing to do with the presence and frequency of my RA symptoms (although learning how to minimize them, even slightly, is very important), and has everything to do with how I cope with the pain and disability.

I’ve learned that even when I have little control over my body, I have complete and absolute control over my mind. I’ve said before that due to the chronic pain, I always feel like I am just sixty seconds away from a major panic attack. In a way this is true, as I have–on many occasions–experienced firsthand the absolutely frightening downward spiral that is prompted by a thought such as “this pain is never going to go away.”

I’ve also learned that even though the pain is constant, as are the corresponding pangs of fear, so too is my ability to stay calm, and to stay relaxed.

A few weeks ago, my 20 year old niece was asked to go upstairs and check on me, as I lay in bed in the midst of a major flare. I didn’t know she had done so until we were talking over lunch the next day. I was telling her that the previous day’s flare was one of the strongest that I had experienced in months, when she responded that she knew; she could see the pain in my body and in my face when she had gone up to check on me the day before.

She also told me that she doesn’t know how I do it; that is, live with the constant pain.

I was a little taken aback…not because the her words made me feel uncomfortable in any way, but because I realized that I didn’t have a good answer to the question.

Because to be honest, I myself don’t really know how I live with this pain all of the time. I just know that I do.

And while it does continually feel like I’m only just a minute away from a complete meltdown, I also know that I’m also just a minute away from another minute of life, another minute of continued happiness.

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

12 Comments

Coping With Chronic Pain: What Is Beautiful About Your Life?

/10 Comments/in /by

“No one wants to hear all of the time that I’m always in pain…least of all myself.”

I was somewhat surprised when this thought passed through my mind this morning, as I was stepping out of the shower.

You see, yesterday–as well as the past days and past weeks–there is one conversation that has been repeated over and over, as I visit with family members and friends who I haven’t seen in years. It goes somewhat like this:

Them: How are you doing with your rheumatoid arthritis?

Me: I’m doing really well. What I mean to say is that I am coping really well. My disease continues to progress, but I’ve finally figured out how to live with it, and  I think that I’m doing really well.

Them: That’s good. From the outside, you seem to be doing much better than the last time I saw you.

Me: Thank you. On the inside I’m actually doing a little worse…but like I said, I’ve learned how to live with it. I’ve had to make a lot of changes, but many of them have been for the better. I still live with a lot of pain all the time, but at least I’ve figured out how to once again be happy.

And as I’ve repeatedly gone through this conversation over the past couple of months, I’ve always told myself that it’s important to focus on the good while still mentioning the bad, when I talk about my rheumatoid arthritis. I used to think that I was doing this because it might be what “others” wanted to hear…but as I realized this morning, I’ve been responding as such because these are in fact the words that I want to hear.

Don’t get me wrong, I’m all about open and honest communication of the pain and disability with which I live, and I certainly don’t advocate for the denial of one’s feelings and emotions related to these issues (something which I experienced myself for all too long). But when it comes down to day-to-day thoughts and spoken words, I know the pain is always there. I know that it’s not going away, that it will only continue to fluctuate around the high end the pain scale, no matter what pain scale is being used.

But I also know that no matter how bad the pain might be, and no matter how permanent this pain might be, life is still good. Focusing on the good doesn’t take my pain away…but it does seem to make it a tad bit more bearable…and in the world of chronic pain, this counts for a lot.

So yes, I am in a lot of pain. All the time. But this is not what I want to tell myself on a continual basis, this is not what I want to hear like a broken record playing in my head. So I choose to tell myself that life is beautiful..and the trials and tribulations that it constantly presents makes life even more beautiful.

If you find yourself being overwhelmed by the pain, stop for a moment, and ask yourself: What is beautiful about my life? And when you come up with your answer, focus on it as much as possible. And while you’re focusing, don’t forget to smile!

And this, in a nutshell, is how I’ve learned to cope with the pain of rheumatoid arthritis.

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

10 Comments

What Do You Choose?

/14 Comments/in /by

I’m reaching a point where I’ve come to realize how small a role my rheumatoid arthritis plays in my life, which is quite a change from where I was a few years ago, when absolutely everything I viewed was seen through the lens of RA.

Now don’t get me wrong…the pain and disability are still present, each and every day and each and every minute. Beyond these constant reminders, there are the daily medications, the cracking joints, the morning limp, the crutches, and all the other items that accompany my journey with inflammatory arthritis.

And while I’m certainly not trying to downplay the severity of this disease with which I live…I guess that’s exactly what I’m trying to do, in a way, when it comes to my day-to-day living.

I may not be able to choose whether or not I have rheumatoid arthritis…but I can choose whether I want this chronic illness to be just one part of my life, or if I want my RA to consume my entire life.

I choose to let it be just one part of my life.

I once let it consume my life, those days that turned into months which turned into years, where every waking second was focused on the pain and on what I could no longer do. I remember those endless nights following discussion boards and blogs and medical information websites trying to learn more about every possible fact and figure, every potential complication and side effect, as I wondered (more like feared) what the future had in store for me. I remember the fear, the misery, the sadness, and the depression which filled my days.

Last night as I looked back on this aspect of my life with rheumatoid arthritis, I couldn’t help from noticing a drastic change in the way I think: soon after I received my diagnosis, I thought my life was over. I’ve since learned, however, that in a weird sort of way, it was only just beginning. Many of my current biggest strengths (patience, ability to stay calm during challenging times, appreciation, dropping many consumerist habits, etc.) I attribute directly to changes that I decided to make after chronic illness entered my life.

Some nights as I lay in bed, reflecting on the day I just had, I can’t help but chuckle at the omnipresent “RA” that is always floating around in my mind. Just as you might expect an RA-Guy-like bat signal to appear, there are those two letters which are seemingly simple, but which stand for so much. Like I said, it’s always there…and just like I not longer expect the pain and inflammation to leave, I also no longer expect that the corresponding thoughts and emotions will just magically disappear. These thoughts need not be abandoned and ignored and made the victim of denial, but they also need not be front and center, always demanding my full attention…if they’re just off to the side, where I can continually observe them and respond accordingly, I know I’ll be just fine.

In the months and years following my diagnosis, I used to assume that depression and misery were a foregone conclusion; after all, how could I possibly be happy while living with a condition that takes me from full mobility to complete paralysis in a matter of minutes, and which often presents pain that is so intense, that life can sometimes seem to come to a complete standstill?

I’ve since learned that even in those moments when it appears like I cannot do anything, I can still always do something…and when I realize that something could be designing in my head while I don’t have use of my body, or thinking about good memories from the past of hopes for the future, or if I just challenge myself to be in the moment and familiarize myself even more with the overwhelming pain, then I am reminded that I can indeed always do something that keeps my mind and body both alive and soaring.

I may not be able to choose whether or not I have rheumatoid arthritis…but I can choose whether I want a life full of happiness, or a life full of sadness.

I choose a life full of happiness.

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

14 Comments