A Virtual Gallery To Bring Awareness To Lupus

Tales Of A Lupus Butterfly by Jules Sherred

spia_lettersThe following is a gift for all of those who suffer from Lupus and for those who want to learn more about the different challenges a Lupus sufferer face. I created this as part of the Share Your Story project.

To view more projects submitted by me, click here.

Tales of a Lupus Butterfly

For Lupus Awareness Month, I have decided to create an eBook and an Audiobook to go along with it. Both of these are free for you to download and enjoy. The name of this book is Tales of a Lupus Butterfly. I have to thank Mark Wheatley for allowing me to use the painting he created for the Lupus Awareness Virtual Art Gallery as the cover of the book.

The eBook is in PDF format and is 104 pages. The audiobook consists of 23 tracks, is 114 MB  in size and 2 hrs 6 min and 15 sec in length. The audio for the book is not the greatest. My soundcard is about to die and therefor there is a lot of noise. However, if you do not listen to the audiobook with headphones, you won’t notice it all that much.

Warning: There is language. While this is okay when reading, NSFW unless you listen with headphone.

Below you will find download links, streaming audio and the Dedication and Introduction.

Right Click – Save As this link to download the PDF.

Right Click – Save as this link to download the Audio.

Dedication

In Memory Of and Dedicated To:

All The Lupus Warrior Who Have Gone Before

May all your Lupus battles be remembered. May your lives be celebrated for both the good and the bad.

Further Dedicated to:

All The Lupus Warrior Who Continue To Do Battle

May we can continue to find the strength within ourselves and each other to continue the fight.

Introduction

It all started after I sent the following Tweet: “Wanna know what my problem is? I’m afraid to stop. I’m afraid that if I stop, I’ll never be able to start again and it will be over.” And with that little bit of introspection, I knew what my contribution to the Lupus Awareness Virtual Art Gallery, for the Lupus Awareness Month 2010 update, would be.

I, like many others people, if not all, who live with Lupus, have a list of fears as long, if not longer, than symptoms. One of my biggest fears is that if I give into the pain and fatigue caused by Lupus, if I completely stop doing, I will never be able to start again. I need to feel as if I am being productive in some way at all times. I do cut back on my activities, but I never completely stop.

I do not know if I could ever adequately explain the aim and purpose of this little book. By the time you are finished reading it, I hope that you fully understand its purpose. But if I had to try and summarize it in a sentence or two, I would say:

This book is so that nobody ever feels ashamed of their fear or anger, ever again. I know that is an impossible hope. Maybe a more realistic hope is, I hope this book lets you know that is okay that you feel the way you are feeling. That you are not alone in what you are feeling. That it really is perfectly okay and natural. There is no shame in it despite your best efforts to beat yourself up over it. That right at this very moment, odds are someone else is feeling the same things you are. I hope that if you start to feel alone, isolated and that nobody gets it, you can pick up this book, read it and really know you are definitely not alone.

And with that, another book was born. This is my gift to you, created from a number of my personal blogs, regarding my own struggles with Lupus. I hope that you find it useful. I hope that it helps in some way.

Julia “Jules” Sherred
October 2, 2010
Duncan, BC. Canada

7 Responses to Tales Of A Lupus Butterfly by Jules Sherred

  1. Mary Spila says:

    I understand that feeling.

    I get up and go to work every morning no matter how tired I am, because I know that there are going to come a day when I can’t do it. Every day I go, pushes the day I can’t one day further away.

  2. Russ Rogers says:

    Looking forward to reading and listening to your book. The Mark Wheatley painting is a perfect complement for it. I’m so pleased you chose to use it and that Mark agreed. I think you should put your book cover on this page, so that when I link to this page on facebook, I can easily illustrate it with your book cover.

  3. [...] a handful of really fabulous submissions but I’ve received some very nice feedback. The free eBook and audiobook I created for the gallery got a really nice boost of traffic thanks to a certain Bad Astronomer being nice [...]

  4. Tony Grannell says:

    Unfortunatly my wife Jayne suffers from lupus,and it’s taken a while for me to come to terms with it as knowing what to expect in the future, your book and gallery are an inspiration hopefully for many people as well as myself,and trying to understand more of this condition.Thankyou.

  5. Maria Smith says:

    I have suffered the symptoms of lupus for nearly 12 years. I had a biopsy done 12 years ago which was inconclusive, a further biopsy done 2 months ago shows that I am negative for dle or sle. But, I have been diagnosed as suffering from Jessner’s disease, this explains some of the symptoms but not all, it certainly does not explain the fatigue and constant pain that I feel. I am really looking forward to reading this book in a hope that I will be able to gain a clearer prospective on this ailment and ways to cope with it on a daily basis

  6. [...] mentioned in my last blog, that the wonderful Phil Plait sent a tweet about the book I created for the Lupus Awareness Virtual Art Gallery. That was super awesome of him and caused me to squee. [...]

  7. [...] those of you who are new to this part of my world and want to learn more, I invite you to read and download this plus read this and listen to [...]

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