Some of you may know that I wrote and published a book about my journey with lupus, titled: Diagnosis: Lupus: The Intimate Journal of a Lupus Patient. (PublishAmerica.com and Amazon.com) The book consisted of selected entries from my daily journal over a three-year period as I was looking fora diagnosis and treatment of this disease.
And, a few of you might have actually read it! I have received some comments and encouragment from other lupus patients -- or lupans, or lupies, or whatever we are called at any given moment. I've been on several on-line support groups recently, and one of the members on one of the groups innocently asked,"Are you planning on writing another book on lupus?"
Well, that, as they said in the olden days, "gave me pause."
I wondered, "Why re-invent the wheel?" And then I thought, "Why not?" This new one would be from others' experiences, drawn from our many personal stuggles with meds, doctors, (the good, the bad, and the ugly) dealing with family and friends, and the outrageous remarks we hear from others-- one of the most irritating, although meant to be encouraging, is: "But you don't look sick!" I always interpreted that well-intentioned remark as "How can you be sick when you are so--- so-- uh....(I usually step in and say, "Overweight? Fat?) Because I'm taking tons of prednisone and other meds that puff me up. It's either that, or deal with the pain of swollen joints and other parts of my body that hurt."
Doctors that insist emphatically "You can't have lupus; you don't have the butterfly rash." Or worse, "There's nothing wrong with you. Go home and forget about it."
Hospitals that abuse us physically and emotionally, running tests that actually contort already pain-wracked bodies and then snap at us to "be still, or I'll have to run this again."
Families that don't understand how we can be up and doing things one day and can't get out of bed on the next. '
Friends who try to understand when we cancel plans for an outing, but who soon stop even asking us to join them in some event, because we just might not be able to go.
And ourselves, since we can sometimes be our own worst enemies by not asking questions of our doctors, demanding answers to our questions when we finally learn what questions to ask, and feeling sorry for ourselves to the point where we're no good to anybody, least of all, ourselves.
So, I'm asking anyone who has lupus, or is suspected of having lupus (SLE or discoid or both) to please email me or leave a comment on this blog: Would you like to contribute to my upcoming book? I am working on several things in advance for this to happen: Refining a list of suggested topics for your comments and setting the format.
For those who express an interest in taking part in this process, let me assure you
I will be sending each participant a Release, stating that my publisher (Vanilla Heart Publishing) and I will preserve your anonymity and your privacy by giving you different names and locations. All comments will be edited for brevity if needed, and for content and clarity (i.e., spelling and grammar) while the intent and tone of each comment will remain intact. While you might wish to "trash" various physicians, I will change the names and locations of those individuals, also. (We don't want a lawsuit!)
Finally, we need to start this process soon, as this book will be scheduled for release in May, 2010, to coincide with World Lupus Day observances.
Oh, and a percentage of my profits from this book will be donated to the Lupus Foundation of America. While the details have not yet been worked out at this writing, my publisher is also planning a promotional event to benefit both readers of this book and for lupus research.
If you would leave a comment, please include your email addy and a brief description of your own issues with SLE or discoid lupus, such as I have in my signature line below.
If you would rather reply by private email, please send it to me at firstname.lastname@example.org
And many thanks in advance. I'm excited about this new venture. I hope you are, too.
Marilyn Celeste Morris
dx'd with SLE in 1988 at age 50 (making me very old, I know) after a 3 year, five doctor search for diagnosis and treatment of this sneaky disease. Currently in remission.