The lupus notebook is a helpful resource to document all things personally lupus related. The lupus notebook is a compact little journal helping you to record every aspect of your health. It also makes an excellent gift for someone close to you dealing with lupus.

By detailing your lupus history, you can keep track of illnesses, medicines, treatments and procedures. Be sure to take the lupus notebook to your medical appointments. You will have a complete record of illness, hospitalization, surgeries, medicines and the frequency that you are taking them.

Primarily, you'll document notes during consultations for later reference. You'll also be able to record future appointments, addresses, organizations, telephone numbers and useful lupus related websites and information. The lupus notebook is your personal lupus journal and diary with all proceeds donated to lupus research.

Why the lupus notebook?

Accredited photographer Geoff Thomas was diagnosed with cutaneous lupus and subsequently became passionate about raising awareness for his disease, including cycling 9018 miles around America.

The majority of the 112 images in this book were captured while cycling around America, across Australia and at various world sporting events.

Geoff has decided to put these previously unpublished photographs to good use by raising funds for lupus research.

All proceeds from the sale of this book will benefit lupus patients worldwide via lupus research conducted at The Australian National University's John Curtin School of Medical Research.

For more details please visit: Humoral Immunity & Autoimmunity - JCSMR - ANU

© Geoff Thomas
A book by DDM + Publishing
www.dirtydogpublishing.com

The Lupus Notebook

(80 pages - pocket book)

ISBN: 978 0 9808598 4 3

All rights reserved

Visit The Official Website

Visit The Lupus Notebook on
 

It’s only taken a matter of a few months, but the legacy of a digital media lupus awareness project by three wonderful girls is sure to benefit not only those in the UK, but so many others worldwide.

When Sophie-Louise Lilley, Kirsty Charles and Katrina Teobald, from The University College Falmouth, Cornwall, were assigned a ‘community project’ related to their studies, Beat the Butterfly was born. And as a consequence, the early results have been overwhelming, not only to the girls, but to the online lupus community around the globe who have embraced their efforts to raise funds and awareness for The St. Thomas’ Lupus Trust in London, and lupus in general.

Sophie, a carer for her mother who has lupus, along with Kirsty and Katrina, have established a refreshing website, produced an amazing awareness video and continue to raise funds for St. Thomas’ Lupus Trust, a charity that raises funds to support the vital and pioneering work of the Lupus Research Team at St Thomas’ Hospital in London.

Visit Beat the Butterfly

Visit The St. Thomas' Lupus Trust

Visit Beat the Butterfly on Facebook

"I've had this idea in my head for a while. When I was described what the "butterfly rash" is, the most common symptom of Lupus, I was wowed...because I could certainly identify with it. I wouldn't leave my home sometimes in the summer when my face would become insanely red from it. Because the butterfly is something people see as beautiful, I wanted to do a portrait of a woman, who can still retain her beauty even with the disease. I'm not sure if the tears are a bit much, I wanted to show that there is still alot of inner pain that one has to deal with when having an auto-immune-disease."

Check out Penelope's pro art site here


 

*  To purchase & learn more about Julia's book, From the Mundane to the Insane, visit her website

In our May edition, we interviewed Lorie Streeter about the lupus song you must hear, "Wherever You Float"

Lorie has recently set up a facebook page and you can now download the song here.

You can also see the original article and learn how this great song transpired by clicking the link below this video - over 1000 have already done so on this site!

"Life is a rollercoaster", Julie says. "It has its ups and downs, but you just have to take one day at a time. I feel God has blessed me with Lupus, so that I can reach out to others. My life could be a whole lot worse, and I've seen a whole lot worse".

I've written this book for all of those who suffer from an autoimmune disease. Especially the great friends I've made along the way. Some of the proceeds of this book will be donated to the Lupus Foundation to help find a cure for this very unpredictable, life-threatening disease!"

*  Julie's story is available via Amazon and Barnes and Noble online - Just search for Julie - Miller - Lupus

I’ve often mentioned that if there’s an upside to lupus, it’s the lovely people you meet. Without having a form of lupus, I wouldn’t have learned of so many inspirational stories and the talents of those affected by lupus. Actually, if I didn’t have a form of lupus, I probably wouldn’t know what lupus is anyway.

I’ve had the fortune of knowing Debra Highberger for close to two years now. No… we’ve never met, however if it wasn’t for lupus, I wouldn’t have experienced or heard her story. The internet has given us the opportunity to share, and it’s wonderful to be able to share Debra’s efforts with you. And it’s brilliant to learn of so many talented people within the lupus community worldwide who are using their talents to raise awareness and inform those who are not familiar with the disease.

Debra’s been a professional artist for thirty years and she owns The Acorn Gallery and School of Art that she’s been running with her husband Jack for sixteen years in Marblehead, Massachusetts. Her work has been shown in New York City, Las Vegas, Barcelona, Seville, Madrid and Boston to name a few.

Debra currently has five paintings hanging in the patient and family library at the Brigham and Women’s Hospital in Boston, three of which are in the reiki healing room. They’re accompanied with writings about the paintings and how they relate to what a patient feels when they have lupus.

I’ll leave it to Debra to tell us a little more about her lupus journey and her exhibition.

“Painting and teaching is my life and it’s very busy. I was diagnosed first with RA in 2006, SLE lupus was added in 2007 and discoid lupus in 2008.

Throughout this ordeal, I have never stopped doing what I love. I teach and paint everyday. I would attach my brushes to my wrist braces so that I wouldn't drop them. In the beginning, my joints were so bad that I had to use a walker or a cane. I only slept three hours a night for the first two years.

I am currently being treated at the Brigham and Women’s Hospital Lupus Center, where they have done remarkable things for me through medication. As a thank you, I have an art show which will be hanging there indefinitely.

I no longer need the help of arthritic aides and feel I lead a very normal life. The fatigue can still be an issue but I just make sure I rest a lot. Teaching outside in the summer is challenging, but with the right protection so far I’m able to make it work. The thing I learned the most from this disease is how much emotional strength I have. I never would have acknowledged that about myself if I weren't put through this test. Also, what makes me smile with peace everyday is the hearts of our children. Some of my students can be as young as five through to college-age kids and adults. If I am not feeling well, even the youngest ones will go out of their way to be helpful. In this unsteady world we live in today, it is a wonderful way to balance our true existence as humans.”

via Geoff Thomas.
 

Visit:
The Brigham and Women’s Hospital
Debra’s Website
The Acorn Art School & Gallery Video
 

Visit Dirty Dog Media + Publishing