Foreword


In 1988, I began journaling about my strange symptoms, my frustrations and anger as I sought diagnosis and treatment of what would eventually be diagnosed as Systemic Lupus Erythematosus (Lupus.) I later realized I could incorporate many of the entries into a book, which was published in 2005 as Diagnosis: Lupus: The Intimate Journal of a Lupus Patient.

Since that time, I have learned a great deal from others suffering from this quixotic disease, and I began formulating a plan for this book.

My purpose, as it was with the original publication, is to inform, in non-clinical language, newly-diagnosed, yet-to-be diagnosed patients and their families; give them courage to continue seeking a diagnosis in the face of frustration and feelings of despair; and offer hope, even when conditions seem hopeless.

By relating our innermost thoughts and feelings, I hope readers will come to realize they are not alone in their frustration, depression, job losses and subsequent loss of income, battles with an alphabet soup of public assistance services, Social Security Disability and food stamps.

Questions such as “How did I get this disease? Will my children also get it? Why doesn’t my doctor tell me anything except “You’ve got Lupus; take this medicine and come back in three months” will be addressed, along with many others.

Although many journal entries detail my struggles with clinical depression, job losses, loss of income and other dire consequences of this disease, my intent is not to linger there, but to press on toward acceptance, remission, and recovery.

As many new members of a Lupus Support Group sigh in relief upon finding us, “I thought I was the only person in the world who felt this way,” so will readers discover they are truly not alone in their thinking and their feelings.

While I compiled these entries from the perspective of a “recovering” Lupus patient, I was also aware that Lupus may rear its ugly head at any moment, bringing me back to the rounds of physicians, medications, and even hospitalization. This is the life anyone with any chronic disease must lead, and their choices are either to feel sorry for themselves and burrow into a sinkhole of despair, or live life as it comes, one day at a time, the best way possible.

I have known persons who have lost the battle and I certainly want to live a long and healthy life.

I also know that tomorrow, my life may be ended in a freak accident.

My decision is, “I’m not going to stop living just so I can live.”