Reading Rucker: 5/20/07

Since May is National Lupus Month,

Today, I am honored to host author Marilyn Celeste Morris on her blog tour promoting her book, "Diagnosis: Lupus: The Personal Journal of a Lupus Patient'"

Marilyn is a multi published author whose books, "Sabbath's Room" and "Once A Brat" are quickly climbing the best seller lists.

"Diagnosis: Lupus: The Intimate Journal of a Lupus Patient" is Marilyn's account of her personal battle with Lupus.

Marilyn, welcome to Reading Rucker.

Marilyn: Thanks for inviting me.

1.. Marilyn, I know very little about Lupus. I wonder if you could explain the disease and it’s symptoms for our readers.

Marilyn: There are two types of lupus: discoid and systemic. The discoid lupus kind affects the skin, causing dark splotches along the hairline and over the face and body. A familiar sign of both types of lupus is a “butterfly” pattern across the bridge of the nose and under the eyes. A person with lupus does not necessarily have to have the butterfly rash. In the systemic kind, it’s an autoimmune disease where the immune system is overactive. The immune system sees vital organs of the body as invaders, and attacks them as if they were foreign bodies. Lupus has nothing to do with AIDS, I must point out. I like the ‘short’, understandable description of what lupus is: Think of the body as a fort, like in the Wild West Days. Every now and then, Indians would attack the fort, and the soldiers inside the fort (white blood cells) would repel the Indians (the infection). Then the fort (body) would settle down and go back to its usual routine, until the next Indian attack.
Only with lupus, there are no Indians. The soldiers inside the fort are ever ready for an attack, but the Indians don’t arrive, so the soldiers (stressed) turn on each other, fighting among themselves, eventually destroying the fort itself: lungs, kidneys, central nervous system, etc.
According to the Lupus Foundation of America, Lupus is more common than Leukemia, Hodgkin’s disease, Muscular Dystrophy, Cystic Fibrosis and Multiple Sclerosis. And yet, the average person rarely knows about lupus and is generally misinformed, vaguely believing it to be “kind of like arthritis, isn’t it?” While my symptoms first presented themselves as “kind of like arthritis,” and I was thus diagnosed and treated for two years for RA, other symptoms soon presented themselves, until, after three emotionally charged and pain-filled years from the onset of symptoms, laboratory tests confirmed the presence of SLE, or Systemic Lupus Erythematosus.
There is no known cause for any person contracting lupus. However, research has found that women of childbearing years are most susceptible, as are African-Americans, Hispanics and Native Americans. Men can have lupus, but it is not as prevalent in males.
A family can have the tendency to develop lupus, as in a family with diabetes; certain family members would be more susceptible.
There is no definitive lab test, but if you show a positive ANA

(Anti-Nuclear Antibody factor, you most likely have lupus.
A rheumatologist should treat lupus patients.
Usually, lupus patients will be treated with steroids. Plaquenil, an anti-malarial, which was found by accident to prevent flares.
Persons with lupus should stay out of the sun, wear Sunscreen, avoid stress, and take your medicines as prescribed.

Symptoms of lupus include these fourteen factors:

Fatigue, overwhelming fatigue not caused by activity.

Do you have/ever had/been told you have:

Achy, painful and/or swollen joints for more than three months;

Fingers and/or toes becoming pale, numb or uncomfortable in the cold;

Sores in the mouth for more than two weeks;

Been told you have a low blood count, anemia, low white cell count or a low platelet count;

Ever had a prominent redness or color change in the shape of a butterfly across the bridge of your nose and cheeks;

An unexplained fever over 100 degrees for more than a few days;

A sensitivity to the sun where the skin breaks out after being in the sun (not a sunburn);

Had chest pain with breathing for more than a few days (pleurisy);

Been told you had protein in your urine;

Experienced persistent, extreme fatigue and weakness for days or weeks at a time even after 6-8 hours of restful nighttime sleep.

If you have 3 or more symptoms, you should see your doctor. As of today, there is no cure, but it is treatable.

2. How old were you when you were diagnosed with Lupus, and what kind of reaction did you have when the doctor told you that you had it?

Marilyn: I was 50 years old when I was finally diagnosed with lupus. Lupus generally strikes young women in their childbearing years, and since I was not typical, most doctors assumed it was rheumatoid arthritis. Until one doctor finally "connected the dots" and confirmed I did have lupus. My reaction was, "Thank God. We know what it is. Now we can treat it." He has told me that is a typical reaction, as we are exhausted from going from doctor to doctor with no relief for the unrelenting pain and fatigue.

3. Did your family and friends treat you any differently when you were diagnosed, or did they know about Lupus?

Marilyn: My children kind of panicked, but when I told them my prognosis was good, they began to relax a little and learned that lupus is a disease process, and I would most likely not die suddenly from lupus. Other systems may break down due to lupus, but so far, so good.

My parents alternately hovered and tried to avoid talking about it. They felt helpless, as a lot of relatives do. My friends were a huge support, since I live alone and they voiced their concerns and check on me often. A support system is essential for living with lupus. Family, friends, church – learn to lean on them for a change. I know, I know, we have always been the ones to comfort, rather than be comforted. To give, rather than receive, care, compassion and chicken soup to those in need. This is your turn.

4. I understand that people with Lupus can’t consume alcohol or seafood because of the adverse effects of the disease. Is this true?

Marilyn: I have not heard of that, but I do know a good diet is essential to my health, even without having lupus. I've never been one to drink, except maybe wine with a great dinner, but I have never been advised not to drink alcohol or avoid seafood.

5. Finally, were your experiences with Lupus what prompted you to write your book, Diagnosis: Lupus

Marilyn: I kept a daily journal recording my frustrations, anger and progress over the years, both before and after the diagnosis. I decided to take portions of this journal and put it in a book form so others wouldn’t feel so alone in their disease. I wanted to tell others that they weren’t the only persons whose families and society in general didn’t understand what was going on with them, physically and psychologically. I wrote this book to encourage anyone with a chronic illness to seek the best possible treatment, to be assertive with your doctors, and to spread awareness of lupus in general.

Linda:

Where and when can we get a copy of your book?

ISBN: 1-4137-6789-3: Diagnosis: Lupus – The Intimate Journal of a Lupus Patient
The publisher is PublishAmerica http://www.publishamerica.com/Amazon.com or Barnes & Noble – most bookstores have websites, or you can have your favorite bookstore order it for you.

For more information about lupus and support groups: Lupus Foundation of America, Inc. - http://www.lupus.org/

Thanks, Linda, for helping spread awareness of this baffling disease.

Thank you so much for taking time out of your busy schedule to drop by. I hope our readers have gained some insight into this disease. I wish you continued success with your books and with controlling your Lupus.
If any of you have any questions you'd like to ask Marilyn, please leave a comment and she'll get back to you as soon as possible.
Again, Marliyn, thanks for coming.

Lupus Foundation, lupus, Marilyn Celeste Morris, living with lupus, ReadingRucker