I've noticed that there aren't many books about being chronically ill for children.  I'd love to read and review more on here.  So I was glad to be contacted by author Judith Klausner, asking me to review her book, Noah the Narwhal: A Tale of Downs and Ups.  This children's book, which is delightfully illustrated by Sarah Gould, follows Noah the Narwhal through a day of being ill.  (Narwhals are small whales with tusks on their heads.)

Noah hears from friends, family and colleagues what we all hear when we have a bad day with chronic illness:  "You sound (look) just fine", "You were fine yesterday"; and when he feels better he gets blamed for faking it, and being self-centered and unreliable.  "Today is not yesterday," Noah counters, feeling more and more down as he continues to be disbelieved and criticized.

In the course of the book, the folks who were not understanding or compassionate about Noah's ill health come to grips with their judgments of him, realizing that he is usually sociable, dependable, and kind, and that he had been having a bad day.  They value Noah for his good qualities and become more compassionate about what his illness does to him.

Young children with chronic illness will feel comforted when they hear about Noah's bad days, because they have bad days, too.  They will be able to relate to others not understanding what they go through and the emotions that they experience.

I see even more value in this story being read to groups of children, where there is one or more with illness, so that the others may learn to develop compassion and empathy toward their friend's limitations and bad days.  Understanding how invisible chronic illness changes and limits others, and learning how to be kind and supportive when others are having a bad day, are valuable lessons to be learned early on in life.

Of course, family members who read this book can become much more sensitized to how their ill loved one experiences life.  These are the people who can become most frustrated by dealing with the child's limitations on a daily basis.

Can you imagine how much easier and fulfilling our chronically ill lives would be if others accepted our limitations when they were younger, or even now?  Can you imagine how much better we would have felt about ourselves when we became chronically ill if we had known that others experienced the same emotions and complications in their lives?

This is an important book for enlightening youngsters about the reality of chronic illness and appreciating the person who has the illness as a whole person, not just someone who is different from them.  If we can nurture acceptance and compassion at a young age, this world will be a better place. 

When we help young (and adult) people with chronic illness to accept their limitations and live beyond them as whole and vital human beings, not as labels or isolated sectors of the population, our society becomes richer with their creativity, spirit and contributions.  When we accept, respect, support and celebrate others who are ill, disabled or different from us in any way, we embrace a practice of kindness that impacts the the entire human race.

Thank you, Judith, for writing this book.

You can purchase Noah the Narwhal: A Tale of Downs and Ups from Amazon and Barnes and Noble in hardcover.

I like Yvonne deSousa.  She's a sista from anutha mutha.  And I like her book MS Madness!  I like her humor about her disease.  Mind you, she's had a rough journey with relapsing/remitting MS (as her doctor said, bluntly, "MS sucks!), but she still finds something to laugh about around every corner.  

My two takeaways from this book : 1/"...laughter is a legitimate way to release negative energy." (I knew that, but deSousa reinforced my belief.); and 2/"MS can mean the end of some things for you (as can any chronic illness)...If you dig deep down and find what truly inspires you, you can do anything you really want to...(though) you may have to adjust your dreams..." Nailed it.

Now as I do not have MS, but my sista from the same mutha does, I decided to enlist her help in reviewing this book.  Here's what she had to say:

"I recently had the good fortune to have a copy of Yvonne deSousa's MS Madness!: A "Giggle More, Cry Less" Story of Multiple Sclerosis put into my hands by a loving sister who knows chronic illness herself and has witnessed the results of my long struggle with multiple sclerosis.  I'll admit to being somewhat reluctant to read yet another "my experiences with this or that disease" type of book but was quickly drawn into MS Madness by Ms. de Sousa's breezy writing style and humor.  Even though we are almost a generation apart in my estimation (and I don't deeply appreciate the same music she does), I certainly found a great deal to identify with in this writer's chronicle of going from being a multi-tasking, arrive early/stay late dynamo in a busy front office setting of a medical practice, to a person profoundly changed by an incurable disease of unknown specific cause.  Ms. deSousa's details about the sometimes baffling symptoms and the difficulty in finally getting to a diagnosis after a long struggle had me nodding my head up and down, saying to myself, "Yep, I know what you mean...". 

Ms. deSousa relates her struggles with "brain fog", a condition that plagues many who have multiple sclerosis.  Cognition changes are scary and I sense that this issue and her overwhelming fatigue were very hard on a woman who prided herself as a can-do/go-to person that she was to her work associates, family and friends.  I identified strongly with her descriptions of the changes in her body as the MS took hold.  Her frustration at figuring out what was going on rang very true, as did the sadness in recognizing the losses this disease causes in one's life.  Ms. deSousa is fortunate to have been diagnosed sooner into her struggle with multiple sclerosis than I was and to have found, with some effort, a doctor that she can depend on.  But what shines through in her telling of her story of coming to terms with this chronic illness is that humor and personal insight rule the day and win in the end."  ~Leslie A. Guyer


Thanks for the eloquent review, Les!  That's definitely two thumbs-up here!  If you have MS or any chronic illness, this is a great book to help lift your spirits and change your perspective if you've been down in the dumps.  DeSousa reminds us that no matter what, there is always something to smile about, though sometimes we have to look pretty durn hard to find it!

MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis is available from Amazon in Kindle and paperback format at http://www.amazon.com/MS-Madness-Yvonne-Desousa/dp/0989972364, or in paperback from Erase MS, where 50% of the profits go to the Race to Erase MS http://shop.erasems.org/products/ms-madness-a-giggle-more-cry-less-story-of-multiple-sclerosis.

I discovered the magical benefits of Yoga in my forties.  At the time I had ongoing lower back pain that occasionally kept me from twisting my torso.  I often walked with a noticeable limp.  My neck was causing me grief.  Chiropractic care gave me temporary relief, but the pain returned.  After being encouraged by several friends, I finally started Yoga classes.  Not only did the gentle stretches ease my pain for longer periods, but the Yoga may have saved my life.  Now that I have been diagnosed with Fibromuscular Dysplasia impacting my carotid arteries, as well as arthritic spurs, I've learned that I could have endured fatal or paralyzing consequences from continued Chiropractics.  

Author and yogi Shoosh Lettick Crotzer has taught yoga since 1974, focusing mostly on teaching adults and children with developmental disabilities.  She has produced two yoga videos: Yoga for Arthritis, in partnership with the Arthritis Foundation; and Yoga for MS, which she developed while teaching classes for the National MS Society.  

Her brilliant little book, Yoga for Fibromyalgia, offers easy-to-follow instructions for gentle, basic Yoga poses. Even if you have never done yoga before, you can easily find relief in these simple, relaxing stretches. Crotzer offers the option of seated or standing poses as well as poses laying on the floor, and encourages the use of props to assist with impeded flexibility and physical limitations. Each pose description features a photo of a model (who actually has Fibromyalgia) doing the pose, what parts of the body are involved and the benefits received. Guidelines are provided to help you get the most out of each pose.  Pose sequences (combinations) are suggested for specific relief, such as low back pain or reducing fatigue and stress.

Yoga benefits the Fibro sufferer through reducing fatigue, lengthening muscles, lowering blood pressure, improving circulation, reducing stress, increasing range of motion and improving mobility.  As with any exercise, you should consult your doctor before embarking on a Yoga practice.  Also, consider taking a class, if you are able.  I found it helpful having a teacher to assist me in adjusting poses to my ability, as well as correcting my pose so that I got maximum benefit without injury.  However, as the poses in this book are very simple and gentle, you certainly can start your practice using the book as your teacher.  You may find it easier to do this with a friend, however, as it can be difficult trying to read and pose at the same time.

You can purchase Yoga for Fibromyalgia: Move, Breathe, and Relax to Improve Your Quality of Life by Shoosh Lettick Crotzer in paperback and for Kindle on Amazon.

What we usually look for in bestselling fiction is a story line that captures our imagination, a generous smathering of mystery and intrigue, a range of human emotion as wide as it is deep, a healthy dose of  sex and violence that is far from ornamental or obligatory, insurmountable David-and-Goliath situations that test the physical and psychological fabric of the characters' strength and endurance, passion and romance that touches our souls so poignantly that we weep, "real" characters with whom we can identify (even when things get ugly), and a victorious resolution that shines the spotlight on the beauty of the human spirit.  This is the stuff that makes a novel hard to put down.

Battle for Grace has all that.  But it's not fiction; every word of it is true.  Ballerina Cynthia Toussaint and her partner, John Garrett, were show-biz kids, overflowing with talent and chutzpah, ready to take on the world and make it their oyster.  But an injury triggers the beginning of a most insidious, life-altering, excruciating disease and brings their dreams to a screeching halt.

I'm a voracious reader, but I don't recall too many books that have impacted or impressed me as deeply as Battle for Grace.  Toussaint takes us on a no-holds-barred journey through her descent into the hell of Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy.  CRPS/RSD is often referred to as the "suicide disease," as many sufferers find taking their own lives to be their only relief from pain likened to being burned alive. Toussaint courageously reveals her suffering, the resulting isolation, and the psychological impact CRPS/RSD had on her and her caregivers. Yes, the journey gets quite ugly and rough. Toussaint falls victim to corruption in a health care system that undermines her psychological state and delays treatment until the disease progresses to the point of being incurable.  The turmoil and chaos that ensues more than tests the glue of her relationship with Garrett. Her soul-baring candor gives us a true picture of how this disease chews up lives and spits them out.

It is Toussaint's tenacious spirit and the deep love of her partner, Garrett, that allow them to rise from the ashes to become the unstoppable activists that they are today.  From raising awareness of the plight of women in pain and helping to bring an unscrupulous HMO to its knees, to the creation of their organisation, For Grace, their story is one of passionate commitment to making this world a better place. 

Each chapter of Battle for Grace includes Garrett's take of the circumstances and his personal experience. His voice adds an intimate perspective from his roles as both caregiver and life partner.  Through him we see how deeply our illnesses impact the lives of those who care for us, and it isn't very pretty.  But Garrett's deep devotion to Toussaint is soul-stirring and inspiring, a testimony to how true love can endure life's most heinous trials.

I highly recommend Battle for Grace to sufferers with CRPS/RSD, their caregivers...and everyone else in this world.  Not only does it help us to understand a condition that has been so vastly misunderstood, but it gives the reader a candid look into the lives of two remarkable, inspiring people.  Anyone, with chronic illness or not, will find something to feed their soul, because each and every one of us, in one way or another, is fighting our own battle for grace.  It's great to know that it's a battle that can be won.

You can learn more about Battle for Grace from Toussaint's website, www.forgrace.org, which also provides wonderful resources and support for women in pain, or and purchase the book from Amazon in paperback, or in e-book format for Kindle or other readers.

Upfront, I say to anyone who wants to bring up the argument against grouping CFS and ME together or even using this particular nomenclature - "Hold on to your horses." Elizabeth Turp resides in the same camp as I do.  We both consider the name Chronic Fatigue Syndrome to be misrepresentational of the severity of the illness, and as she points out, Myalgic Encephalomyalitis isn't a medically accurate term.  But as current research and most of the medical profession refer to this collection of symptoms as such, and often group them together, this book uses the terms simultaneously for lack of better, widely accepted terminology. Turp acknowledges the problem of identification, so don't brush off the importance of this book just because you reside in the activist camp that shuns anything labeled as such.

Giving this book to your caregivers and associates - family, friends, colleagues - can be a lifesaver, not only helping to increase your quality of life as a sufferer but that of those around you.  It is downright insane to expect people who have not experienced Chronic Fatigue Syndrome/ME to understand what you go through. I've had people comment on things I've written about chronic fatigue and when I've tried to explain how I felt. They said, "Yes, we all get downright tired, don't we?"  Uh-uh.  They don't have a clue.  How can they unless we have enough energy to give them a blow-by-blow account of what our day is like or give them an oral dissertation on the research we've read?  I doubt we'd hold their audience for that long, anyway.  If they don't understand, we can't expect them to be truly compassionate nor can we receive the assistance and support that we veritably need.  This book is our saving grace.

Turp is an integrative counsellor who works in NHS primary care and private practice in the UK.  She became ill with CFS/ME in 2005 (the same year as I), and lost her ability to work, walk, read and drive when her illness was at its worst.  She was able to use her knowledge and skills to explore what other CFS/ME sufferers experience, as there are many different manifestations and levels of severity of the symptoms. The resulting book, written specifically for friends and family of the sufferer, includes her own experiences and case studies of others, and most importantly, wonderfully descriptive word pictures of how CFS/ME can affect an individual, along with excellent advice on how others can be the support you need.  Chapters of the book assist the reader in understanding how having a friend or family member with CFS/ME will change their own life, what kind of support and caring the sufferer may require, how to help the individual cope with the illness, and practical advice on helping with the requirements of daily living.

A most difficult task for the CFS/ME sufferer is placing the responsibility of learning about the disease in the hands of others.  This is where you discover who your true friends are and the depth of their compassion. If you purchase the book to be passed around to those close to you, you can only hope that they will read it. Thankfully, for those who aren't big on reading or just don't have much time, or for those on the periphery of your care circle, the last chapter of this book summarizes the top ten tips on how you can be helped by others.

Turp's excellent book is easy to read, comprehensive, full of compassion and packed with practical advice.  I found it to be a treasure trove of knowledge, and if (or when) I become more severely fatigued again, I will definitely start passing it around to those who need the education.  I highly recommend that you buy at least one copy if you have CFS/ME, or if you are a caregiver for someone who does.  It will make the lives of both of you so much better.

This book is available at Amazon in both paperback and Kindle format.

It is said that the eyes are the windows to the soul.  I say, "So is poetry."  In One Man's Chronic Pain: Poetry from the Heart,  writer, blogger and health advocate Michael Fernandez opens the window to his life of excruciating pain from daily migraine and Churg-Strauss Syndrome (a rare form of vasculitis).  But from within the tortured words of heinous suffering, there emerges a glimpse of a beautiful human soul that will not be knocked down; a heart that reaches out to others who suffer; and a spirit that fights to raise awareness of these painful diseases, despite the suffering he endures from just breathing some days. 

Some of Fernandez's poems are raw, painful, and at times, dark flights of thought; others are passionate pleas for medicine to heal his pain, for others to understand his suffering, and for a pain-free life that is beyond his grasp at this time.  He only writes his poetry while in the midst of a high intensity migraine, which he says allows him to use the bare emotion to write effortlessly.  His words take us into his pain, and then further into his heart:

Every day I sit in so much chronic pain it's as if I'm being infinitely tazed,
My body convulses with the surge of electrical impulses tightening all my veins.
My muscles clamp up and my nerves get a strong dose of shock,
As my vision and hearing begin to distort I know a migraine is about to pop!
(from As if I Were Being Tazed)


Look at what we can do for one another when
working together our words flow like a running river,
healthy and free our minds run astray from
this pain we all suffer each day.
(from Still Bleeding Red)


One Man's Chronic Pain: Poetry from the Heart is available from Amazon.

Approaching a comprehensive book about a disease that I don't have can be a bit intimidating.  After all, this book is about your LIFE with Rheumatoid Arthritis.  But after a page or two of Lene Andersen's writing and I'm put at ease.

I must say right up front how much I enjoyed reading this book, even though it is about a horrible disease.  Andersen, who has suffered with RA since childhood, has woven together her own experiences through the years with research and current medical practices, and has written a testament to a life well-lived, despite limitations imposed by RA, with candor, insight, aplomb and humor.  The information, advice and tips are well-researched and extensive citations are provided in her end notes.

Andersen provides the newly-diagnosed patient a solid understanding of how Rheumatoid Arthritis impacts the body.  She describes the current medications available, their pros and cons, covering the cost of the meds, and the two-fold treatment regime involving the suppression of the disease's progression and management of pain.  Her chapter on Opiods is particularly useful for someone who is trying to make a decision about including them in their medications.

Chapters covering the side effects of RA treatments and pain medications are broken down into the specific areas of the body where the side effects may manifest.  Andersen has been through it all and manages to stay strong in her belief in the medicines' benefits as opposed to their downsides.  She offers practical, workable, and successful tips in managing side effects while offering assurance about the entire experience, like a wise big sister who has seen it all before.

Andersen offers a disease Management Tool Box, a collection of ideas in managing pain through medication and surgery, as well as other non-medical means, such as complementary therapies (acupuncture, massage, and meditation, to name a few), and physical and occupational therapy.

Above all, Andersen is a proponent of living your life with RA to the fullest.  Her book inspires, informs and gives the RA patient hope that their life isn't over with the diagnosis.  It's only begun, in a different form than as it was before, loaded with challenges and inconveniences and discomfort.  But much of your life before RA can continue, with adjustments, and the possibilities for your life are still endless if you are willing to embrace the requirements of living with disease.  RA makes a lot of demands on your life, but as Andersen has been living her life with grace and humor, with the disease as a wheelchair-bound companion, so you, too, can make your life with Rheumatoid Arthritis work for you.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available in e-book format almost everywhere e-books are sold, such as Amazon, iBooks, Kobo, Nook, and is also available in paperback from Amazon.  The book's website can be found at www.YourLifewithRA.com

Louise Bibby is a single mum who, like the rest of us, has chronic illness.  The time she would like to spend playing with her daughter has often been hampered by her chronic fatigue. It didn't take her long to realize that it's quality, not quantity, that counts.  So Bibby developed a number of fatigue-friendly strategies to enable her to have that quality time with her daughter, while allowing her the time she needs to rest. Out of her experience was born this brilliant little e-book, consisting of 31 fifteen-minute power plays.  

You are probably familiar with many of Bibby's recommendations, such as hide and seek, baking a cake, or playing a board game.  Though I have no children of my own, I have used a number of her strategies to spend quality time with my own great niece and great nephew.  But to put all these ideas together in one little e-book, with attractive illustrations, makes it easy for you and your child to sit together and select the activity for your playtime.  This e-book is helpful for every parent, but especially if your illness limits you in your interactions with your kids.  Bibby has also provide a wealth of resources in her book.  

You may purchase Power Plays with Your Kids for Kindle at http://www.amazon.com/Minute-Power-Plays-With-Your-ebook/dp/B00MHE16W8.

Every being experiences pain, with the exception of those with genetic abnormalities that prevent it.  As humans, we experience it on many levels - physical, emotional, spiritual, mental - and most of us try to avoid it as much as possible.  But those for whom pain is a daily companion, those with Chronic Pain, cannot avoid it.  They live it.  Every day. Sometimes in varying degrees.  With and without medication.  With and without relief.  If occasional pains annoy most of us like a mosquito in the room, Chronic Pain for many is like an elephant in the room.  An elephant that sits on you.  

Lene Andersen's little e-book is a poetic meditation on Chronic Pain that raises its fist to the suffering, accepts pain's companionship, acknowledges its usefulness, brushes it aside, dives into the depths of its isolation, wretches with the agony, rises above its limitations, and transforms through the experience.  For that is the ride on which Chronic Pain takes you;  a rollercoaster.  You scream.  You fear.  You may disembark, but you know full well that you'll get back on again.

Anderson's courage to dive into those depths, and express them with candor and insight, wraps around you like a friend.  A friend who knows your darkest hours and encourages you to grow through them.  The best kind of friend you can have.

7 Facets: A Meditation on Pain is available in e-book format almost everywhere e-books are sold, such as Amazon,  Kobo, or Nook, for under a dollar.  A minescule investment for a seven-faceted gem!