Lupus Site - a guide for lupus patients and their families

I was diagnosed with lupus almost five years ago, however I’ve experienced severe illness almost all of my life. From the time I was a youngster, I battled pneumonia, asthma, bronchitis, colitis, Grave’s disease…you name it, I had it! My sensitivities to medications, especially antibiotics, made it difficult to treat the infections I had, and I sometimes felt that our family doctor’s office was a “home away from home.” I almost flunked first grade because I missed so much school due to illness!

Despite these problems, however, I found ways to “have a life.” I kept up with my junior high and high school classes, turning my big double bed into a makeshift study hall, and graduated on time. Afterwards, I earned a Bachelor’s degree from a prestigious East Coast university and a Master’s degree from UCLA, studying in France and Spain, and holding high-profile jobs. I won writing awards, published magazine and newspaper articles…

Then, I was diagnosed with lupus.

My “life” skills - all of them and then some - have been tested by the fire of coping with the ultimate unpredictable, frustrating, debilitating, confounding illness. In many ways, my activities have been derailed, put on hold or scrapped because of the new constraints placed upon me due to sun sensitivity, medications, fatigue and pain.

The goals I’d set for myself five short years ago have been altered, too. Setting achievable benchmarks is doubly, triply, difficult when lupus might flare up at any moment. Even in “mid-stream,” goals sometimes have to be modified when new symptoms crop up.

Relationships are colored with the specter of lupus, too. Social plans must be more fluid than ever before, always footnoted with the possibility of having to be changed because of a flare or a sudden infection.

Basic life issues, such as death, faith, and aging, take on more urgency. At a time when many friends and relatives are in their “prime,” I often feel, once again, the kind of isolation I did in my early life, when my “school” was the four walls of my bedroom, or an oxygen tent in the hospital.

Has all of this been frustrating?
Yes.
Have I been discouraged, at times, that my life might not be as productive, as exciting as it has been?
Of course.
Do I fear, sometimes, that I’ll be left behind by my healthier, more hale peers?
Oh, yes.
Then, is there any silver lining here? Any hope? Any positive in all this negative?
Most certainly!!!

Taking Charge

From the day I was diagnosed with lupus, I sought out as much information as I could find. Books, web sites, support groups, even Flannery O’Conner’s memoires…I devoured information. Because lupus is so individual - each patient has a different set of symptoms, treatment protocols, wants and needs - I carefully sifted through what has worked for others. I made lists of questions for my doctors and listened carefully to their answers. And from all that data, I gleaned the things that would help me cope, in fact thrive, in spite of the constraints and pain of living with lupus.

This took much trial and some error. It also took complete determination and something more.
It took faith that it was possible, even in the face of lupus, to have a life.
A painful life? A difficult life?
Sometimes.
But a good life? A peaceful life?
Yes. Certainly.

Clinging to this faith and determination, through prayer and study and introspection, I started to look for ways to turn the diagnosis of lupus into a positive.
Positive?!
Well, yes. As much as possible.

And from this searching, I found the basis for the, “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life.”

Doors opened almost immediately. My agent confided that her sister-in-law had died of lupus and she (my agent) was anxious to take on a lupus project. My doctor, Daniel Wallace, M.D., was completely supportive, offering to write the foreword and recommending a superb co-author, David Hallegua, M.D. The right publisher came along. The writing process began.
And the book was born!

A Book for All Patients

From the start, the book was not intended to be the “view from the mountaintop,” but rather a practical, spirit-filled support for all lupus patients and their loved ones who are struggling to have productive, meaningful lives. Many patients, spouses of patients, parents, and children stepped forward and offered to be interviewed. Healthcare and other professionals, too, gave their expertise in areas as widely varied as the emotional impact of lupus and the essential role of prayer in coping with chronic illness. Throughout, Dr. Hallegua offered his insight as a rheumatologist concerned for the welfare of the whole patient, and I was able to add my own experiences to the text.

With these insights and experience, the breadth of information we included became full, covering medical, emotional, financial, personal, relationship, faith, and productive areas of a life with lupus. Underlying all these areas is the premise that there are things lupus patients and their loved ones can do to take charge of the presence of the disease in their lives.

In short, it is possible to have a life with lupus.
A good life.
A peaceful life.
A full life.
From Dream to Reality

“Taking Charge of Lupus” (New American Library/Penguin Putnam, ISBN: 0-451-20699-1) is available in our online bookstore.

Dr. Hallegua and I will be promoting the book as much as possible (watch newspapers and this newsletter for information on signings and appearances!). Besides getting the information included in our book into the hands of patients and their loved one, it is our hope that awareness of lupus and the challenges it poses will also be broadcast.

We need more information about the disease out in the public!
And, above all, we need a cure!
Your Walk with Lupus

Through faith, determination, and trial and error, I’ve become very comfortable, even peaceful, about my life with lupus. It’s not that I don’t detest the pain, unpredictability, and symptoms of the disease. It’s not that I don’t experience restrictions and frustrations each day. It’s not that I don’t still get scared or angry.

But I have found ways to turn my disease into something positive, if not for me, then I hope for others.

Am I some kind of “superwoman?”
Not at all!
I believe that everyone with lupus can achieve a satisfying quality of life in spite of the disease.
In spite of pain.
In spite of the troubles and setbacks and anguish.
In my support groups, in the interviews I conducted with lupus patients, I have met one of the most remarkable group of women and men. Each has so much strength, so much intelligence and compassion!
Each person, in his or her own way, can make a tremendous difference in his or her life, in the lupus community, in the world.
It starts with determination.
It starts with faith.
It starts with taking charge of lupus,
And comes full circle
To having a life.

© 2002 Maureen A. Pratt. All rights reserved.

CONTACT INFORMATION: Email: [email protected]. Website: www.maureenpratt.com

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