Amazon Category:  Self-Help Publisher: PublishAmerica ISBN-10:  143767893 Pages: 216 Copyright: 2005 When she was suddenly assaulted by myriad baffling symptoms of joint pain and extreme fatigue, the author embarked on an intensive search for diagnosis and treatment of what would be diagnosed as systemic lupus erythematosus, a little-known autoimmune disease that promised to destroy her body, her mind and her spirit. From the pages of her intimate daily journal, we travel with her through chronic joint pain, frustration, anger and grief for her former self to her current state of remission. Far from being a litany of complaints, the author’s pages reveal her unexpected spiritual growth and gratitude for life itself, and she hopes she can be of help to others who suffer from this disease or other chronic illness. May 2002 “Are you sure you have lupus?” My newest doctor asked as he entered the exam room, my lab tests from the week before in his hands. “Yes. I was diagnosed in Oct. 1988,” I replied. “Why? What do the tests show?”“Well, they show no sign of lupus. No ANA, sed rate is normal, no RA factor…” “Great!” I burbled. “Suppose I’m in remission?”“Or maybe you never really had lupus,” he shrugged. For one crazy, hopeful moment, I actually thought: “Maybe he’s right. Maybe I didn’t really have lupus, after all.” Then my thoughts flooded to the three years of constant joint pain, lab tests, five doctors telling me it was either “all in my head” or “Just rheumatoid arthritis” all the while being told not enough symptoms were showing in the blood work. Never really had lupus? I wanted to shout: Then what was all the lung infection, the hair loss, the treatments with Cytoxan, Imuran, prednisone; the difficulty walking when vasculitis caused foot drop in both feet and I fell down a lot? Frustration mounted on frustration as the disease progressed. Never really had lupus? Then what was with my red, swollen joints, causing one rheumatologist to rhapsodize, “What beautiful swollen knees!” When I couldn’t wear rings, watches or bracelets because of the intense pain and swelling? When even my collarbones hurt? Never really had lupus? Then what was all the bouncing from job to job, being fired or quitting due to sheer physical exhaustion, or finding it impossible to concentrate on the task at hand? Never really had lupus? Then why did I break out in a fiery rash after being in the sun? What was the point in hauling my body out of bed at 5:30 a.m., climbing painfully into a tub or hot water, eating breakfast so I could swallow my handful of meds (that didn’t seem to be doing much good) so I could get dressed and have my butt in a chair at my office-du-jour by 8:00 a.m.? Never really had lupus? Then what was all the memory loss about? What words escaped me at just the right time to embarrass me so that I could only shrug and murmur, “lupus lapse” much as Richard Fish on Ally McBeal shrugged, “Bygones.” Rather than lash out at this newest, most optimistic young doctor, I merely smiled and shrugged, “Yes, I really did have lupus.”  Excerpt I wish I could tell you that my disease came on suddenly, that I went to the doctor, was diagnosed and treated immediately, and everybody lived happily ever after. Unfortunately, that didn’t happen. Nor does it happen with the majority of lupus patients; at least with those I’ve known. After three years full of pain, doubt, fear, and anger, and after changing doctors, both primary care physicians and rheumatologists, five times, I was at last diagnosed with SLE. And my treatment took a very long time, and brought with it, not the expected relief of pain, doubt, fear and anger, but Four (Other) Horsemen of This Disease: Weight gain, high blood pressure, diabetes, and vasculitis. I must also add clinical depression, job loss, loss of income, foreclosure, lining up for food stamps, medicines and other Public Assistance services. I was truly humbled when I picked up my handicapped parking tag, food stamps and vouchers. I was infuriated by low-level clerks who used their positions of power to assert their superiority over me, verbally slapping my wrists, and at one point, one even shaking her finger at me, yet I had to submit in order to get whatever assistance they could offer. I had a meltdown in my parish priest’s office, confessing that I needed financial help; I had a true gasping-for-air, snot-slinging hissy fit in the college library when I was told I might not be able to complete my schooling. And all this time, I tried to reassure my family and friends that I would not, could not, leave this crappy world via my own hand, even though I admitted, however, I would just like to lie down and die. That’s what this disease did to me. This is what this disease did for me.I learned there is a God, and I’m not Him/Her. I learned that God loves me as much as he loves you. I learned I’m not perfect, never have been, never will be, and that’s okay. I learned that this disease is not a punishment for “sins.” I learned how to ask for help. I learned how to be grateful for and accept that help. I learned that things are merely objects, that money is simply a means to an end, and not the be-all and end-all of life. I learned the difference between needs and wants. I learned to surrender, to “Let go and let God.” I learned that expectations are only pre-meditated resentments.I learned not to discount the message because of the messenger. If all of the above sounds vaguely familiar to those of you who are members of a 12-Step Recovery group, you are correct. I make no secret of the fact that I am a grateful member of the Al-Anon Family Group, and lest anyone fear I am breaking my anonymity, my last name is not the same as my children’s or my ex-husband’s, since I wisely had my maiden name restored upon my divorce. When I mention friends’ names, some are members of the fellowship, some are not. I have, however, changed the names of the doctors and institutions, simply because I believe it serves no purpose to impugn their reputations. I also know today that they did the best they could with the information available at the time. They’re not perfect, and they certainly aren’t gods. When I write of my parents’ shortcomings, I am not “parent-bashing” or playing “Let’s blame mom and dad.” My parents weren’t perfect, any more than my doctors were perfect; they also did the best they could during my childhood and in trying to cope with their feelings about my illness. I give thanks daily that I was already a member of the Al-Anon Family Group and the Episcopal Church before the onset of symptoms of SLE. While working with my sponsor, while studying to be a Stephen Minister, and while literally crying on my dear friends’ shoulders, I was sustained by their love and caring support. By holding me in their arms, keeping me in their prayers, and yes, by giving me swift kicks to the posterior, these people kept me alive. To this day, I don’t know how they managed to listen to my constant crying, complaints, and self-doubts, much less stand stoically as they heard me rage at God, myself and the entire universe for whatever was going wrong in my life. Because of them, I am alive. Today. And I know today that is all we have – This day. This moment. I hope my experiences inform you, strengthen you, and give you hope. First, Some Facts…..Some symptoms of lupus: Do you have/ever had/been told you have: Achy, painful and/or swollen joints for more than three months; Fingers and/or toes becoming pale, numb or uncomfortable in the cold;Sores in the mouth for more than two weeks; Been told you have a low blood count, anemia, low white cell count or a low platelet count; Ever had a prominent redness or color change in the shape of a butterfly across the bridge of your nose and cheeks; An unexplained fever over 100 degrees for more than a few days; A sensitivity to the sun where the skin breaks out after being in the sun (not a sunburn); Had chest pain with breathing for more than a few days (pleurisy); Been told you had protein in your urine; Experienced persistent, extreme fatigue and weakness for days or weeks at a time even after 6-8 hours of restful nighttime sleep. If you have 3 or more symptoms, you should see your doctor. According to the Lupus Foundation of America, Lupus is more common than Leukemia, Hodgkin’s Disease, Muscular Dystrophy, Cystic Fibrosis and Multiple Sclerosis. And yet, the average person rarely knows about lupus and is generally misinformed, vaguely believing it to be “kind of like arthritis, isn’t it?” While my symptoms first presented themselves as “kind of like arthritis,” and I was thus diagnosed and treated for two years for RA, other symptoms soonpresented themselves, until, after three emotionally charged and pain-filled years from the onset of symptoms, laboratory tests confirmed the presence of SLE, or Systemic Lupus Erythematosus. There are two distinct types of lupus. One is discoid lupus, where the skin shows large “splotches” or red rashes in clusters, mostly on the face, across the cheeks and the bridge of the nose, creating a “wolf-like” mask. One can have discoid lupus and systemic lupus at the same time; generally, those who suffer with the discoid form of lupus do not develop the systemic form. The second is systemic lupus; that is, it is throughout the body. It has been classified as “an autoimmune disease.” Lupus has nothing to do with AIDS, I must point out. I like the ‘short’, understandable description of what lupus is: Think of the body as a fort, like in the Wild West Days. Every now and then, Indians would attack the fort, and the soldiers inside the fort (white blood cells) would repel the Indians (the infection). Then the fort (body) would settle down and go back to its usual routine, until the next Indian attackOnly with lupus, THERE ARE NO INDIANS. The soldiers inside the fort are ever ready for an attack, but the Indians don’t arrive, so the soldiers (stressed) turn on each other, fighting among themselves, eventually destroying the fort itself: lungs, kidneys, central nervous system, etc. As of this printing, there is no cure, but it is treatable.

Lupus Now Healthy Reading
When the author was suddenly confronted with symptoms of joint pain and extreme fatigue, she undertook an intensive search to understand what eventually would be diagnosed as systemic lupus erythematosus. Throughout the pages of her intimate daily journal, she takes the reader on a journey from chronic joint pain, frustration, anger and grief for her former self, to her current state of remission. Far from being a list of complaints, the author's pages reveal her unexpected spiritual growth and gratitude for life itself. In addition to this book, the author has written fiction and a memoir.

Fan Mail
Dear Ms. Morris,

I am currently reading your book Diagnosis Lupus. Thank you for putting into words all the frustrations, fears, and anger I have felt in the last 14 years as a lupus sufferer. The last year has been particularly difficult. Despite being having a loving family, I have felt so isolated. I too was a type A personality who tended to go until stress made me ill. I too feel that no matter how bad I feel I must accomplish something everyday. I often berate myself for being "lazy" when I barely have the energy to walk to the bathroom. I too fight depression and a creeping brain fog that scares me more than the joint pain and other myriad manifestations of the "wolf". I am just now allowing myself to grieve for the life I had planned and worked for since my early teens. (I graduated law school) I saw your book at the very point in my life where I was starting to question my sanity. I kept telling myself I couldn't possibly feel as bad as I thought I did. Maybe it was all in my head. I needed to remember all I went through at the beginning of this journey. All the doctors who told me so many outrageous things. All the tests that were "inconclusive" Unlike you, I new almost from the beginning that I had lupus. My mother had a friend when I was growing up that had lupus. For some strange reason, I always knew deep down that lupus and I would meet as adversaries somewhere down the road. I know it sounds crazy but its true. Thank you for your book. I am sure it has touched many people as it has touched me. If you read this letter, I would be honored if you respond. I hope you continue to feel well. It gives people like me hope.