About the Book

Click to Purchase "DESPITE LUPUS"

Published in the summer of 2009, thousands of copies of Despite Lupus have been sold, expanding its readership to nearly a dozen countries. The book has received the coveted LFA Education Committee seal of approval and has received world-wide attention from lupus organizations like Lupus UK, Lupus Ottawa, and Lupus Melbourne. It is available in bookstores and libraries across the country, and has become a nationally-recognized resource for lupus patients, chronic illness sufferers, doctors, nurses, and caregivers across the country and around the world.

Despite Lupus also appears under the Book recommendations in the Lupus community at WebMD.

Here’s a snapshot of Despite Lupus:

Feel like you’re losing the battle with lupus? Look no further than Despite Lupus, the book that will help you obtain the emotional and physical wellness you deserve. There is no cure for lupus, but there is a way to live well, despite it. The choices involved in living well with a chronic illness aren’t easy, but no one is in a better position to make the right ones than you. In Despite Lupus, you’ll learn how your lifestyle choices have contributed to your illness, why you make the choices you do, and most importantly, how you can make better ones moving forward. A fulfilling life awaits you; this is the path that will get you there.

In Despite Lupus, you’ll discover: 

*Tips on tackling the mental and physical limitations brought on by the disease
*Insight into dealing with doctors, co-workers, friends and family members
*Tricks for managing test results, prescriptions, and myriad symptoms
*Exercises to help you eliminate stress, re-evaluate priorities, and refocus productivity
*Guidelines for setting boundaries at home, at work, or when traveling

In Despite Lupus, you’ll find a comprehensive and enlightening take on successfully managing a life with a chronic illness like you’ve never found before. In picking up this book, you’ve taken your first steps toward living well, despite lupus!

Who has Despite Lupus in their library?
  • Lupus Foundation of America chapters across the country, in particular: Seattle, Central Illinois, Washington D.C, Maryland, Virginia, and Minnesota.
  • Lupus Ottawa
  • Lupus UK
  • Lupus Melbourne
  • Alliance for Lupus Research
  • The S.L.E. Foundation
  • CafĂ© Moms


Excerpt: 

THE FIGHT OF MY LIFE

At the time I was diagnosed, I had been married less than six weeks, was at a high point in my career in television production, and had no interest in letting a chronic illness upset my plans for the future. Therefore, I refused to let it do so. Yes, I was stuck with a confusing, chronic illness that was capable of inflicting debilitating pain and making me suffer miserably, but I decided to fight my way to wellness. I down-right revolted. I refused to give in to the disease, kicking and screaming every time lupus tried to assert herself. I thought my best defense was to deny the fact that I even had it, living with complete disregard to its limitations.

When I felt rundown or exhausted, I pushed on. When my joints were achy and swollen, I convinced myself they weren’t and kept on moving. There were days when I was stuck in bed, severely sick and immobile, but most days, I just weathered the symptoms the best I could. I thought a positive attitude and an indomitable spirit would be the keys to coping with the physical and mental pain. If I didn’t show any signs of weakness, lupus would take the hint and move on to someone more susceptible and defenseless. Those characteristics didn’t fit my profile, and I was going do everything in my power to prevent lupus from changing me.

Unfortunately, lupus didn’t care how hard I tried to fend off her symptoms. The more I pushed her away, the more she raged on. My symptoms worsened, and my health declined severely. I continued to believe that my determined efforts could be productive, if I just pushed a little harder. But my body didn’t have anything more to give. The countless medicines and pain killers, a blood transfusion, lung taps, multiple visits to the emergency room and a week in the hospital weren’t enough to keep my body afloat anymore. Unlike any other adversary I’d ever been up against, lupus is a potentially fatal, chronic illness, and I was losing the battle.

For four years, I desperately struggled to keep hold of the life I’d known (demanding, yet fulfilling career, busy social life, packed vacation schedule, invincible attitude), but my body couldn’t take it anymore. I was fighting life, instead of living it, and had resigned myself to the fact that I would be lucky if my body held out to the age of thirty. I told myself I wasn’t giving up; my body was just giving out, and there wasn’t anything I could do about it. I began thinking about the things I should do before I died: work less; live more; appreciate my family; enjoy time with friends; be more creative; attempt to fulfill my personal, life-long goals in the limited time I had. The all-encompassing objective was to realign my priorities and get the most out of life, while I still could.

But as I crafted my plan for a premature death, it seemed I was making an even more compelling case for life. Why shouldn’t I get my priorities in line right now, not for death’s sake, but for the benefit of my future? Did I really have to work as much as I did, or was I letting pride and stubbornness rule my decision to do so? As committed as I was to acting as if lupus had left me unaffected, who was I keeping up appearances for, and was I profiting from the charade? I wanted to travel the world, have children, and enjoy my hobbies, but if I didn’t start taking care of myself, I’d see none of those things come to pass.

It took me far too long to connect my driven mentality, an overactive lifestyle and my continued decline in health. While I wasn’t preemptive in my efforts, you can be. That’s why this book makes the connection evident within the first few chapters. You’ll see how your past lifestyle choices have contributed to your illness and why the choices you make in the future can propel you into a permanent state of well being. You’ll learn why you make the decisions you do and how to make better ones moving forward.

Once I realized the error of my ways, I started focusing on making better decisions for myself, ones that would prevent my lupus from flaring up. I knew if I was healthier, I’d be more mobile and have more energy. I would enjoy life like I used to. I could spend more quality time with friends, enjoy evenings out with my husband, and be the spunky, happy wife, sister, friend and daughter I once was.

Taking ownership of my life no longer seemed futile. It seemed like I could actually improve my life with lupus, if I just chose to do so. I could actually start living well, despite lupus.

During the next two years, I downshifted almost every aspect of my life. I quit my job and made it my number one priority to get myself back in good health. I cancelled vacations, passed on social engagements, and incorporated a 2-hour nap into my daily routine. Some days, the decision to live well seemed just as difficult as the suffering I had already experienced. But in most cases, it proved to be the greatest decision I had ever made.

I learned all I could about the disease. I attempted to understand its patterns and adjust to its needs, making changes and sacrifices along the way. My life was different, for sure. But no doubt, it was better. After all, I was living well. Before, I was merely surviving. Ever so slowly, the pain, swelling, and fatigue began to subside. My failing organs and deteriorating spirit, both of which I thought were permanent fixtures in my life, started to heal. Hopelessness, despair and anxiety were replaced with confidence, happiness, and serenity. I had been trying so hard to extricate the disease from my life, I had failed to consider the positive effect of incorporating (and accepting) it as part my life’s master plan. I began to see just how good my life with lupus could be. And so can you.





Comments

Anonymous said…
Dear Sara,
Your book has instantly changed my outlook on my life with Lupus. I was diagnosed 6 years ago at the age of 25, just 2 weeks before my wedding. Obviously there are many parallels in our lives. About 6 months ago, I began experiencing all kinds of symptoms that I had never had before and have been in a terrible depression since. It has been difficult to care for my 2 year old daughter and the drs appointments have been endless.
I just finished reading your book and had many "Ah ha" moments...I have been in denial and fighting the disease, not accepting it and making healthy changes to my lifestyle that might improve my condition. All throughout the book I saw myself...and several times I cried because until reading your book I felt so alone...as if no one could possibly understand the emotional toll this disease has been taking....I cannot thank you enough for writing this book. I know I will reread it several times to reaffirm all the positive suggestions you made and to help me remember that "a life with lupus is worth living". L.D.
Sara Gorman said…
Thank you for your kind words!!!
Anonymous said…
Dear Sara
I bought your book a years go and wrote you then to tell you how it resonated with me. Like you I was diagnosed at 26 but 2 weeks prior to my wedding! I've been doing ok and I was able to have my daughter who is almost 3. My husband and I are starting to talk about having another child and how the stress of another pregnancy and certainly another life to care for could change things related to my lupus. Today I reread your book and it gave me hope and also a feeling that I am not alone... That I'm not the only person that has had to think these thoughts and feel these feelings. I am so grateful to you for writing this book and sharing your life with your readers. Any advice regarding adding another child to the mix?!
Best regards
Laura D'Onofrio
Sara Gorman said…
So glad you know you're not alone, and thanks so much for writing! the best strategy i found when approaching both of my pregnancies was to feel as good as possible before getting pregnant (i.e. very limited if any disease activity). i find the healthy you are and the better u feel before u get pregnant, the better chances you'll have of feeling good during and after the pregnancy. the goal is a successful and healthy pregnancy, so i found i had to set myself up to succeed. for me, that meant waiting until my disease was manageable...which was hard,but worth it.

additionally, if u can, prepare to get help. with a second one, the ability " to sleep when your baby sleeps" kind of goes out the window, because there's aother little one in tow...so i found it immensely helpful to have help so that i COULD get that rest that i so desperately needed. hope that helps...so much more to say, but we'll start there. :)
Toy Deann said…
My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time. I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia. Aside of that I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it. I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called, "A Piece of Me". For more information check out my website: www.toydeann.com
We definitely don't get the recognition that we deserve. I'm happy that you've shared your story!
Sara Gorman said…
I can't wait to check out your site! So happy you, too, have found an outlet. You will no doubt positively impact so many people! Thanks for sharing.

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