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.
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