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Life With Lupus

Book on the lupus experience


#1

As a former journalist, I am considering writing a book on the ordeal of living with lupus, revealing the up-and-down nature of the disease, the daily misery it causes us, the complexity of finding the proper mix of medicines to fight the condition, etc. I would try to offer the story from a victim's perspective, of course, and that might include some testimony from sufferers like all of you. Initially, I will probably discuss my situation and the strange combination of illnesses (lung cancer, interstitial lung disease and kidney issues along with the lupus) that I have experienced over the last five years. But I might include some insight from some of you if you are willing and able. Perhaps you could provide some interesting stories from your experiences, such as symptoms you live with, issues with doctors, etc. - anything that might be appealing to a reader.

This potential project - and I stress potential - has only just begun, with a rough draft for the first paragraph, subject to many changes. But I wanted to let you read a sampling of what I might be doing and offer any advice. Feel free to be critical.

Does anyone out there believe there might be interest in such a book?

Anyway, here is an early-morning start to what I am considering. I will use the name Keith to refer to myself at this point:

"If pressed for an answer, Keith could produce no exact date as to when his life took a sudden reversal of fortune, a five-year downward spiral that he never envisioned as his age crept closer to the dreaded 50-year-old milestone. At some point - he couldn't say precisely when- his great misfortune began and has only worsened over the period that has followed. Keith has been forced to accept the mysterious and uncalled-for - at least in his mind - run of bad luck that struck in the fall of 2009.

The fall of 2009 is the closest to a date of the original diagnosis Keith can provide without looking through hospital records. Unlike many people who pride themselves on being able to state the dates of memorable occasions as easily as they butter their toast in the morning, Keith typically came up woefully short when asked to recall exact dates of events normally qualifying as important and worthy of remembering. That task was made tougher when Keith discussed the origin of his illness that has tortured him daily for so long now.

In part, his inability to recall exactly when the lupus began to sink its razor-sharp and long-reaching talons into Keith's vulnerable body is due to the fact that he was not certain he was indeed afflicted with the very complex lupus disease - or any disease at all. Based on the symptoms that first began to haunt him, Keith suspected a lingering flu bug was the culprit for the early body aches, joint pain, tender nodules (small but painful bumps beneath the skin that became the target of jokes among Keith and co-workers) and other annoying symptoms that something was very wrong and needed to be checked out by a doctor who could properly diagnose the problem.

A team of doctors at Fort Sanders Hospital in Knoxville, Tennessee required several days to determine that lupus was Keith's new constant companion and formally announced this to the patient one day as he rested in a hospital bed wondering - ever curious and somewhat afraid - what could possibly be wrong. From there, a series of seemingly endless setbacks would baffle, frighten and frustrate both doctors and patient in what became a rollercoaster ride that also included some uplifting and encouraging moments that prevented Keith from losing the elusive hope for recovery that often appeared impossible to see on the gloomy horizon."

Please let me know what you think and if you feel this might be a worthy endeavor. Anyone that would be willing to help please let me know.

Thomas Franklin


#2

I think what you've written so far is really good, a book like this might help others understand what its really like to live in this nightmare, I would definitely be interested in working on such a project. I think what you're doing takes great strength and courage. Let me know what I can do to help.


#3

Thanks for the feedback. I have numerous experiences that I think people could relate to. The emotions, the helplessness and hopelessness we often feel, even some humor once in a while. I just wonder how many people outside of the lupus community would be interested. Do you feel the average person would be interested???

Thomas
hopeful said:

I think what you've written so far is really good, a book like this might help others understand what its really like to live in this nightmare, I would definitely be interested in working on such a project. I think what you're doing takes great strength and courage. Let me know what I can do to help.


#4

Definitely good so far and worth the effort! However, everyone's journey, while similar, is so different and you might want to include a variety of different people's experiences.


#5

Yes, Lilac. That was my thought as well. I'd like to include the experiences of others, but I still must ask: Do you think outsiders (those not suffering from lupus) would be interested enough to buy such a book?

Thomas


Lilac83 said:

Definitely good so far and worth the effort! However, everyone's journey, while similar, is so different and you might want to include a variety of different people's experiences.


#6

I think if you are looking to interest a wider audience, you may want to target your book towards anyone with a life changing chronic condition, family/friends of someone dealing with such a condition, or individuals looking for inspiration in overcoming many challenges in life.


#7

I agree with lilac83, it should reach out to others with chronic illness or even invisible illnesses and to the families and others that live with these people. I know how much of strain my own illness has put my family through, at least those that actually stuck around. I'm still very interested in this project, let me know what you decide.


#8



Thomas said:

I will let you know how it progresses. I definitely want to chronicle the experiences of others, and would not ask that anyone's name be used in the publication. My chief concern remains: what is a realistic size audience for such a book? I suppose if I fail in getting it published I could still run it in small chunks at this website unless someone objects. I don't know about you, but I have some interesting and sometimes funny stories to relate regarding hospital stays, etc.

Thomas

I agree with lilac83, it should reach out to others with chronic illness or even invisible illnesses and to the families and others that live with these people. I know how much of strain my own illness has put my family through, at least those that actually stuck around. I'm still very interested in this project, let me know what you decide.