Many of us are now embarking on our first chronic illness journey.  We are navigating very choppy waters, and most of us have difficulty weathering the storm, and we need help. Even veterans, such as I, who have fought for their right to the best medical care possible, or to just find a doctor who believes them, find it a lonely and frustrating peregrination that can make medical conditions worse because of the stress involved. The Take-Charge Patient to the rescue!

My major chronic illness journey began in Australia  and followed me to the USA.  After four heart attacks and continual bouts of what was thought to be Prinzmetal's angina, along with other chronic issues, my pcp called me a hypochondriac and my local cardiologist threw up his hands and told me to find a doctor at a research hospital.   Through a roundabout journey online and on phone, I found a cardiologist at Tufts who turned out to be one of my elementary school classmates, but he couldn't do anything for me.  He led me to a specialist at NIH who was kind enough to call me on the phone and discuss what he could do.  But when we discovered that one of the drugs he used in testing could trigger my asthma, my hopes were dashed.  However, he pointed me to research by a cardiologist with whom he was familiar at UPMC.  Through testing, the new doc also found an arterial issue beyond my heart, diagnosed me with Fibromuscular Dysplasia (FMD) and referred me to a neurologist.  That neurologist was more involved with people who had had a stroke, and not neccessarily my disease, so thanks to the FMDSA, I knew there was a program for FMD at Mass General, where I hit the jackpot. I'm now a participant in their research and get top quality care by a team of specialists.  And they have discovered that the FMD may have played a role in my coronary artery dissection in 2005.  This only took, hmmmm, almost 9 years.

I've learned to be a Take-Charge Patient the hard way, and I still have a lot to learn.  How much easier my life would have been during those stressful years if I could have read this book!  Even though I've become a veteran traveler on this chronic illness journey, I found an incredible amount of information and assistance in this valuable resource. 

Award-winning author Martine Ehrenclou tells of her own journey with chronic pain, which, ironically, began while she was writing The Take-Charge Patient: How You Can Get the Best Medical Care.  Her research with 200 medical professionals provided her with strategies to navigate the health care system, and she was able to incorporate the lessons she learned along the way to create an even more brilliant resource for others suffering with chronic illness and pain.  

Patients and caregivers will both find a wealth of guidance and support in The Take-Charge Patient, a simple step-by-step guide to becoming a self-advocate and navigating the health care system (a most confronting enigma in and of itself) with confidence.  Ehrenclou wrote the book with the intention to empower patients to become pro-active and assertive participants in their own health care.  She guides you through preparing for appointments so that you are taken seriously and given better care; creating your own Health File; finding a good doctor or specialist; managing medication and medical errors; how to research your condition; covering the cost of care and health insurance; preparing for surgery; and clinical trials. She provides easy-to-use checklists and a plethora of resources and medical definitions, with an index to help you find just what you need to know.

The only flaw I found in The Take-Charge Patient is what seems to be a persistent issue with many publications these days, be they self-published e-books or hard copies from major publishers:  Typos.  This may not bother many people.  A few are okay by me, but this many tend to irk me. 

Having said that, I do not hesitate to HIGHLY recommend this quality book for everyone with chronic illness and their caregivers, as well as any family who will soon or later be confronting the befuddling maze of our health care system.  It is easy to read, easy to use, and provides a wealth of information so that you can jump ahead in the queue and not waste years trying to find the best care for your health and well-being. This book is empowering and thoughtful, and I am so very grateful that Ehrenclou has the compassion to share her journey and accumulated knowledge with us.

The Take-Charge Patient: How You Can Get the Best Medical Care (2012, Lemon Grove Press, LLC) is available as an e-book and in paperback from these outlets.

This book should have been titled The Heart of the Lion, as that's what beats inside the story and its heroine, a girl from Hong Kong overcome by a disease of uncontrollable trembling and twitching.  

This memoir follows Yee through a young life riddled with challenges -- a string of misdiagnoses of a puzzling and crippling disease, migrating to a new country (USA) as a child, assimilating into a new culture, living with an abusive father, surviving a brutal assault -- that were met with a stern determination to take control of her life. Despite being placed in Special Education because of her physical problems and slurred speech, Yee's commitment to bettering her life, and her strong faith, earned her a college degree and a career as a social worker. It wasn't until 1995 that Yee was finally diagnosed with dopa-responsive dystonia and was able to receive treatment.

Yee's story is candid, tragic, intriguing and inspiring.  We hear many stories about people being challenged by chronic illness. But Yee's life has featured layer upon layer of hurdles that most of us cannot even imagine. Though she may have been tripped up on occasion, she got up, brushed herself off, and forged forward to the realization of her goals.

I found this book to be truly fascinating and feel grateful that Yee shared it with me.  As much as I learned from it, I was left wanting to know more detail about how her disease impacted her school years, her intimate relationships, her career, and her marriage.  I want to know what this amazing young woman is going to do next.  And I feel moved to learn more about this devastating disease.

The Eyes of the Lion is available in paperback and for Kindle. http://www.amazon.com/The-Eyes-Lion-Cindy-Kong/dp/1458212394.

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!

I must be blunt.  Multiple Sclerosis is one helluva disease.  I don't have it, thankfully. However, reading Faulty Wiring revealed that I have risk factors, including a sister who has the disease.  Needless to say, I lost a bit of sleep over that.

I am very grateful to have read this book by Suzanne Robins.  I now understand much more about this insidious disease that assaults so many bodies and lives. Robins is a terrific writer and she describes her MS experience with candor, boldness, and finesse. Intimately, she shares the impact the disease has had on her life, her fears, and the many lessons she has learned, as well as her frustrations in finding a diagnosis and treatment.  She handles how to tell children the truth about illness with great sensitivity.  Robins also provides frank and well-researched details about the physical, mental and emotional manifestations of MS.  And her lengthy, comprehensive list of resources and references are of great value to the MS patient, as well as those wishing to learn more about the disease. 

Reading Faulty Wiring gave me a deep respect for Robins, as researching and writing a book like this is a tremendous undertaking, requiring a great amount of will, commitment, and energy.  Despite the difficulties her disease presented, she produced an excellent adjuvant resource and companion for anyone commencing on a journey with Multiple Sclerosis. I have recommended Faulty Wiring to my sister, and I recommend it wholeheartedly to you.

You can download an epub version of Faulty Wiring: Living with Invisible MS for $4.99 at https://www.smashwords.com/books/view/305742, or Kindle format ebook downloads for $4.49 at http://www.amazon.com/s/ref=nb_sb_ss_i_0_13?url=search-alias%3Dstripbooks&field-keywords=faulty%20wiring%20living%20with%20invisible%20ms&sprefix=faulty+wiring%2Cstripbooks%2C256&rh=i%3Astripbooks%2Ck%3Afaulty%20wiring%20living%20with%20invisible%20ms