Lupus Lifestyle

Lupus Books

2008-07-05T10:58:00.000-07:00

"The Lupus Book" by Daniel J. Wallace, M.D. is "A Guide for Patients and Their Families" I learned most of what I know about Lupus from this book and my own experiences. Another fantastic book on Lupus is "Taking Care of Lupus" by Maureen Pratt and David Hallegua, M.D. also has a forward by Daniel J. Wallace, M.D. It's a book on "How to Manage the Disease and Make the Most of Your Life". If those two books aren't enough, there are two more reliable sources on Lupus; "Living with Lupus, the Complete guide " by, Sheldon Paul Blau, M.D. and Dodi Shultz. The other book is, "Lupus. Everything you need to know" by Robert G. Lahita, M.D. and Robert H. Philips, PH.D.

-With all of those Lupus books, you'd think that would be everything, right? Well, I have done some research, and there is not one book out there that concentrates primarily on Lupus in Children! I am not an author, but I hope that someone comes out with a book on Lupus in Kids/ teens soon!

PS: Teresa, send me a comment with your email, I would like to get in touch. (I won't publish it, so don't worry that you're email would be visible)

Lupus LA Conference

2008-07-02T09:20:00.000-07:00

I attended the Lupus LA meeting at Cedars Sinai Medical Center on June 28th, 2008. There were four speakers; Mariko Ishimori, MD, Daniel J. Wallace, MD, Ram Singh, MD, and Swamy Venuturpali, MD. Dr. Ishimori spoke about "How do we diagnose Lupus?" and the difficulties in doing so. Dr. Wallace spoke on "New Therapies for Lupus." and approvals with the FDA. Dr. Singh spoke on "Two Neighbors, Sex and Damage: New Stories of Lupus from the Singh Laboratory" this lecture was very scientific on studies with mice. Dr. Venuturupalli spoke on "Complementary and Alternative treatments". The conference ran from 8:00-1:00pm and they served breakfast and lunch. (The Food was Great!) I got to meet and exchange information with other lupus patients. I suggest that younger patients should come to these conferences. I am 13 and there was another 18 year old there.

-Venice the "Blogmaster"

SLE Lupus Foundation

2008-06-27T20:32:00.000-07:00

Lupus Foundation is based in New York and has a sister company called Lupus L.A.

You can reach Lupus LA at www.lupusla.org and you can reach the Lupus Fondation www.lupusny.org

Busy through the Fevers

2008-06-27T15:39:00.000-07:00

For me, when I listen to music, or play an instrument, the aches of Lupus, and the pain of Arthritis go away. If you're not musically inclined, find a hobby you enjoy, to keep your mind off of your sickness. Find something that will never get boring, like reading or model making. I get so bored when I am home sick, so I have tried everything to keep me from going out of my mind. I have found that playing music, singing, or doing an art project will keep me occupied, and that TV gets boring. Also, getting books on c.d. from the library will keep your interest for hours when you're are too sick to read a paperback. I have missed about 8O days per school year for the past three years, and when I have a fever, I can do absolutely nothing. My mind will not work and I have enormous fatigue. Music has got me through the worst of my Lupus Flares and I hope that you find a hobby that will pull you through.

-Venice the "Blogmaster"

School and its Problems

2008-06-27T15:29:00.000-07:00

The hard thing about lupus is that some teachers don't understand your problems. That is where the trusty friend comes in (thats me) to give you all your homework and fax any notes that might've been missed in class. Find someone you trust in each class and develop close ties with all the teachers to make sure you get all the homework and any classwork. It may be hard at first to get everything organized, but when its accomplished, you won't stress about school due to lupus. Have teachers send you a syllabus with everything that will be done within a couple weeks and the worksheets in a packet, if that's possible. Make sure not to over-stress the teacher, because as bonds grow tense, the teacher will be less likely to send you all the work. Because notes are given by day, have your friend send you all the notes, and the homework that the syllabus/ packet didn't provide. When you are well enough to go to school, thank everyone for helping you, because if they feel you're grateful, they'll feel good about helping you. Good Luck!

-Yasmina

The First Post

2008-06-27T11:04:00.000-07:00

Hello Everyone!

I am Venice Gell, the "Blogmaster" of Lupus Lifestyle. I created this blog in hopes of helping kids and teens with Lupus all over the world. I will post tips and helpful advice concerning how to live your life with obstacles such as Lupus and Arthritis. If you have any personal experience in dealing with Lupus/Arthritis, please comment. Thank You.

-Venice Gell