If these walls could talk!!

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Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 9/27/2007 10:25 PM (GMT -6)   
Hey y'all.   I'm seriously considering writing a book about my experience with Lupus.  I know there are books out there like that.  I was wondering how apt you guys would be to purchase a book of this nature.  I would also like to know what's the one piece of advice you would give a new lupie?  What's the one thing you would like the general public to know about lupus?  Thanks for your input!  Judy

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/27/2007 10:55 PM (GMT -6)   
Hi Judy . . . Go for it!!

I'm more of a library book kind of person but when newly dx'd, people are searching for info.

If you click the link in the last line of my signature there is a topic called Lupus Resources. There is a list of hints put together by the members here, if you would like a list of handy hints.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/27/2007 11:55 PM (GMT -6)   
Hi Judy, I think that is great! The genral public have a very limited of understanding. But if you could get stories from people who are going through it I think that would be a God send for both those old and new to the disease.
If I have to limit what I would say to a new lupie is that they need to find a support group. No matter how much your family wants to be there for you they can't understand. It kind of remindings me of when my husband talked about vietnam. No matter how much we talked or I read and tried to get involved the truth is I wasn't there so I can't really truly understand. You will learn much more for other lupies than you will from your doctors and family.
Maybe you could write somthing with a chapter on. Stories from lupies in their own words. AA says if you stick around long enough somone will tell your story and I beleive that's true.
If there is one thing that I would like the public to know it would be this, your loved one is sick with a potential life threatening disease. Even though they might look healthy much of the time don't fall into the trap of beleiving they aren't really sick. People have a tendancy to be in denial. There are a lot of things in this world that are true weather we beleive it or not.
I think it's great idea to write a book. Let us know if you decide you are going to do it. I think it would be great for lupies and good for you as well.
let me know i I can do anything to help. you can reach me thru the group any time.
love ya
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 9/28/2007 2:25 AM (GMT -6)   
I think it is a good idea. I think it is even a good idea if we all can contribute a page or two about our experiences to lupus (LOL). I believe that this can help people understand us more and understand the things that we've been through.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/28/2007 6:08 AM (GMT -6)   
I think the others have made great suggestions. I say go for it and good luck if we can help in anyway let us know.

Best Wishes,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 9/28/2007 10:57 AM (GMT -6)   
Hi, Judy. I think you have a great idea! I know when I was first diagnosed with lupus, I'd never even heard of it so the first thing I did was looked for a book on the subject. The main thing I would stress to a new lupie would be to NOT be afraid to get involved in your health care. Knowledge is a powerful tool. I would suggest reading all you could stand on the subject of lupus not only by authors that are docs, but also by authors that have experienced the disease for themselves. This knowledge helps you be much more confident when speaking with your docs and also points out things you may not immediately recognize as important for you to tell your doc about. I've also found that each author provides you with one or two pieces of helpful information aside from the general explanations regarding the disease itself, symptoms and treatments. We can use ANY helpful info., right? Best of luck,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 9/28/2007 3:19 PM (GMT -6)   
You guys are so awesome! I really appreciate your input. I personally agree that fellow Lupies and coming to this forum help me more than anything. I have actually already written a couple of chapters. Great suggestion omega! What do you guys think about if I add stories you submit and give a percentage of the proceeds to Lupus Research or maybe to the forum? Just a thought! Maybe everyone could pick a category to share your experience with a certain aspect of the disease, or family issues, dealing with doctors, balancing family life, etc... Whatcha think?
God Bless,

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 9/28/2007 5:32 PM (GMT -6)   
I think this is fantastic. I bet we all would love to sumbit our stories to you so that we also can help the public and others to u/stand.
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