It’s All In Your Head – Patient Stories From the Front Lines
Author: PJ Langhoff
PJ Langhoff starts pulling at our heartstrings with the dedication page – “Two Lyme patients who recently took their own lives … one due to the intractable nature of this insidious illness, and the other specifically lost hope when his beloved physician was forced to close hi practice due to a decision by a state medical board which doesn’t understand the complexity of Lyme disease and because the doctor treated outside the “standard of care,” daring to cure severely ill Lyme patients when no one else would.”
Langhoff has this to say about her “constant companion” – “ Thank you Borellia burgdorferi, my unwelcome, but constant companion and double-edged sword. You were the needle in the haystack that took doctors a dozen and a half years to “find,” though I recognized you from the start. You managed to destroy everything in my life that was my life prior to being innocently infected. All my goals, ability to function, family, work, understanding of medicine and politics, and my love of the outdoors have been permanently altered. You have brought years of pain, suffering, starvation, anaphylaxis, fear, anxiety, disability, immobility, dysfunction, anguish, and loss. You turned my life completely upside down and forced me to reinvent myself to accommodate you – the destroyer who thinks of nothing but its own survival. Thanks to you, my life has taken a much harder road that I ever would have imagines, or chosen for myself. And yet by your presence. I have learned the kindness of many, and the graces of humanity, patience, courage, strength, and a renewal of spirituality. You give me the motivation to get up in the morning and fight you each day, to help raise consciousness of the devastation you bring to your victims, in the hopes that one day you will no longer threaten human life – and for that, you deserve acknowledgement.”
The foreword is gracious and commanding, written by Dr. Joesph Jemsek. He speaks about truth – “ If one does not embrace the truth, the forces at hand will disfigure truth in a manner which changes lives so they become existence without meaning. Ignoring truth forces lives to lose purpose; lives which last 3-4 decades and then end; lives which fade into insignificance regardless of to whom they belonged.” He asks, “When did we lose our soul in this country?” If you have Lyme disease, I can’t imagine this question not having come up at least once on your path.
“In all we do, we must remember that the best health care decisions are made not by government and insurance companies, but by patients and their doctors.” – President George W. Bush, State of the Union Address, January 23, 2007. How soon we forget our words until we have to actually live them. But, for President G. W. Bush, who was diagnosed with Lyme disease, he may not have the whole truth. Only after reading PJ Langhoff’s series will he truly understand what he may be facing with this disease. Ms. Langhoff walks us though the realities and patient responsibilities; a chapter devoted to ticks – about how they feed, their cycle, proper tick removal, and prevention; and the three stages of Lyme disease (chronic Lyme disease is the third and last stage).
This first book in Langhoff’s series, “It’s All In Your Head,” is a wealth of information that should be the first book you pick up – long before you are diagnosed with Lyme disease and certainly after. The book includes pictures for a better understanding of the material, Lyme disease and herx symptoms check lists, an explanation of the standard tests available and patients’ stories.
My favorite story is from North Carolina. It seems that “having Lyme disease has its up side. It allows you to experience firsthand, all the major themes of literature, from ancient Greek tragedies and comedies, to the themes of Shakespeare, and other great writers. Also mixed in are some of the seven “deadly sins,” which I find rampant with this disease. Love: of good doctors and good friends; the kind that stick around. Love also of family who help out when the going is very tough, and of the times when you feel well. Hate: of the disease and its process, and the ritualistic hunt for a good LLMD, the money to get there, to stay there; dealing with insurance companies, broken PICC lines, nurses who won’t wash their hands, hospital doctors who refuse you your first mandated hospital deliver of a new IV drug, then write a letter to your primary caregiver telling them you don’t need it, you don’t have “Lyme’s” and that you are considered drug-seeking (for antibiotics!)” And the list goes on to include Envy, Gluttony, Abandonment, Humor, etc. If it weren’t all so very true, some of it would be hysterically funny!
You may recognize some of the names in the book, know of the organizations, but you will certainly identify with the stories. It’s a terrible road we have before us, but it’s nice to know we aren’t alone on our journey.
PJ Langhoff has put together a collection of most everything we need to know about the disease, introduced us to people with Lyme disease who have stories we can relate to, and a reference page to refer to for more information (she only left out the only dedicated Lyme disease radio show, In Short Order).
This is a must read!
The above review was contributed by: Sue Vogan: Sue is a Writer & Author of NCO-No Compassion Observed: To read more of Sue's reviews Click Here
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