Oh sweetie, I understand! I've found "Lupus: The First Year" by Nancy Hanger to be very helpful. I bought it on Amazon and downloaded it to my Kindle.

As weird as this is to say, I've gotten a lot of help from organizing and minimalism blogs. Part of living with lupus has meant streamlining my life, and eliminating clutter snd setting priorities have been big parts of that.

Hello catbillie,

I have read so many books about Lupus/SLE/MCTD and all the other connected diseases I suffer from
and I felt afterwards it was a complete waste of my time...and effort...
... because, unfortunately everyone suffers from it/with it in a complete different way...
... and there is no formula in existence, for which any of the books are really written about... or explained...
the only help for me was and still is....
.... is, to observe my body and learn (over time) when exactly
I have to react instantly. and go to a doctor straight away..
and when I may leave it a few days to wait and see...
... because sometimes I may "just be extremely unwell" for a few days and then I may get better ... and I better take a rest on the sofa to get better soon... instead or running about
without getting anywhere...
That is in my opinion the difficult part and to learn and analyze that every time individually has been my surviving-rule ever since...
But it is important to learn as much as possible from your own body and to learn, when exactly it is time to get to the doctor as quickly as possible....
Unfortunately, this particular knowledge is not the result of reading books, but of learning to read your own body and listening to your instinct...
I wish you very good luck and all the best from Kristina.

^ She's right.

Books do little to teach you HOW to live with this disease, but there's a few pointers that I picked up:

Allow only positive people in your life
Stay as active as you can tolerate (even if that's only stretching)
Take your meds
Track your symptoms (write them down by date)
Eat as healthy as you possibly can - throw out the processed foods
Don't beat yourself up
Accept your disease, but learn to live WITH it (take naps as you need to and don't feel guilty, in fact, dump guilt altogether)
Focus on what you CAN do ...not what you Can't do.

When I was 1st diagnosed I went thru the same thing. I chased after books & related items but I found that alot of what I came across was somewhat outdated.
One of the best thing I did was contact our local Lupus Association & they sent me a good package of info that was very well based.
In addition, some of the best help I get is from being here on DS. After all who can relate & aid you better then those that living with the same thing.

I have purchased plenty of books on natural, holistic ways of "treating" this disease. I bought supplements and weird foods and holistic pills from whole foods. I also spent almost $200 on acupuncture that I think caused more stress than I had to begin with! I did this because I wanted to believe there is some tree root or trigger point therapy that will make it all go away.

Here is my honest advice: BIG WASTE OF TIME AND MONEY!!

I think the best thing you can do is work closely with your doctor, try your best to minimize stress as much as possible, get plenty of sleep, take a multivitamin and eat clean, and be as active as possible. Also, allow yourself to be upset about it when you feel upset and take naps on your days off.

Good luck!

All has awesome advice. I spent months trying to find the same answers to the questions you have. What I learned is: Every patient is unique in treating the disease. Because of all of the secondary diseases related to lupus, and how the body reacts. Getting the diseases into remission is the goal. Listen to your body, journal what you are feeling, eating, doing, what helps, what doesn't help, etc.. Find the patterns. And become a very active part of your health care team, make sure you visit the doctors often, many of the medications needs regular lab work to monitor how your body is reacting to them, or follow up care with specialists . Write down questions for your doctors for your next visit. Most of all be gentle on yourself, learn to accept new limitations, and avoid stress. Take care of yourself.

Thank you all so so much for your advice. I appreciate it so much!

I found some good books at my local public library. Maybe the person who collected them and later donated them had good advice in picking these out. They seemed to be very authoritative and fact-based.

I'll look through the library's online catalog and see if I can find the titles and authors for you. I'll remember them if I see the names of the authors, but my memory isn't good enough to recall them right now. I remember that the doctors who wrote them had treated many hundreds of cases, so these books were solidly grounded.

Found a couple of books I'd recommend...

Lupus: a Patient's Guide For Diagnosis, Treatment, and Everyday Living by Dr. Ana I. Quintero del Rio

The Lupus Book: A Guide for Patients and Their Families by Dr. Daniel J. Wallace

What lupus has taught me in 22 years I have had it. It changed my life , it taught me not to give myself away. It taught put myself first. I check in with myself everyday and when I do something for others I make sure I can. Having a positive attitude is most important. You are what you eat. if you don't take care of yourself you will pay. It is important to make peace within yourself and to make friends with yourself. Be kind and loving to yourself. These things will give you a better life. I hope this is helpful.

I belong to a group here on DS based on a book. The author had lupus. I think it is the bestselling book on Amazon in the lupus category. I am following the recommendations in the book and doing much better. Here is a link to the group if you would like to check it out. http://www.dailystrength.org/groups/curing-autoimmune-and-mimics-gaining-health/discussions/messages/18064195