Talk About It Tuesday - Explaining Lupus to Children

Having two children of my own, I found this article published by the Lupus Foundation of America very helpful. Check it out!

Explaining Lupus to Children

You have lupus and you don't understand it -- How can you explain it to your children?

By Robert H. Phillips, Ph.D.
Center for Coping with Chronic Conditions

This is a very common problem. How should you explain lupus to your children? For young children, less of an explanation will be possible, perhaps only including some reassurance that you'll be OK. With older children, explanations can be more detailed. Encourage questions. If your children really don't want to ask you anything, they won't. But they know they can if they want to. Upsetting thoughts kept inside can be destructive.

Questions from older children will probably be more direct and more specific. Resulting discussions, if handled properly, will not only be helpful for your children, you'll enjoy them. Great feelings of closeness can result.

The way you answer questions depends on the age of your child as well as how much information is desired. Provide answers specifically for the questions. Don't go into detail, unless your child asks for more information. Try to determine what the child really wants to know.

Be careful that you don't frighten your child. Be careful of what you say. You know what you mean, but how will it be interpreted in your child's head? Think how you want your information received.

You want your child to share feelings with you about lupus. Showing that you accept having lupus, and that you don't mind (and even welcome) questions about it, will keep the lines of communication open.

Specific Issues

Frequently, children will ask you (or think about) whether you're going to die. They may see you in bed a lot. They can tell you're not able to do what you normally do. You may be having difficulty "getting around" adequately. You may need a lot of medical attention. What you say then? Reassure them that you're not going to die. It might be helpful to bring them with you to speak to a professional (your physician or your child's pediatrician, for example).

What happens if lupus physically prevents you from being a "good parent" as you'd like to be? How do you explain to your child that you can't take him/her somewhere, or that you can't do what you promised?

Children don't want to understand when they're upset. Start by emphasizing that you have no choice. Try to make "deals". Remind your children repeatedly that there may be times that you won't be able to do much. Work out ways that some pleasant time can be enjoyed together when you do feel up to it.

Spending "quality" time with your children (special time where you really share feelings and activities) is more important than "quantity" time (how many minutes or hours you're physically with them). Spending quality time, talking with your children, and being open and receptive are the most important ingredients in helping your children handle your having lupus.

Talk About it Tuesday - The Lupus Recovery Diet

Okay, it's Tuesday. I've set aside Tuesday on my blog as a special day to discuss everything lupus-related (events, news, and other various). Today I want to share an e-mail that I received from Jill Harrington, author of The Lupus Recovery Diet. If you have been diagnosed with lupus and have yet to purchase the book, I have one question for you: WHAT ARE YOU WAITING ON? The Lupus Recovery Diet is a must-have book for every lupus patient. I have included the e-mail in it's entirety below:

Dear Korika,

I received another "good news" email that I wanted to share with you - to encourage you to keep giving diet changes a try:

"Hello Jill,

I don’t have any questions but I must tell you that once the doctors said it looks like lupus I ordered your book and have changed my diet. Six months into the change my symptoms have disappeared and I am no longer in pain and exhausted all the time. I can tell when I have over done it and get extra rest. I am back to running and exercising like I did before all this started and as a bonus have lost 20 lbs.

Now at 36 I have hope where before I felt like I was doomed to a life of exhaustion and feelings of being unwell. But not anymore!!!

Thanks, Kathy" (her name changed for privacy)

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I also wanted to let you know that I am about to start a Blog. What's a Blog? A Blog is an online website where I can put articles and videos and random news - for you to read and share with others. It's harder to set up than I thought it would be... but it will worth it... I know you'll love it. Watch for it soon (maybe next week, keep your fingers crossed).

All the best,

Jill
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To learn more about The Lupus Recovery Diet, visit http://www.lupusrecoverydiet.com/.

LFA DC/MD/VA Lupus Tip of the Week - For those taking Prednisone

Okay, here are your weekly lupus tips:

• Try to never miss a daily dose
• Always try to take Prednisone in the morning
• Prednisone may increase your appetite, so stick to a strict diet to avoid weight gain
• There is a high risk of osteoporosis, so drink milk, eat cheese, and consider calcium supplements. Additionally, try to do some type of weight-bearing exercise (running, walking, weight-lifting, or aerobics) five times a week.
• Wear a medical alert bracelet in case of emergency
• Alert your primary care physician immediately in case of infection

LFA DC/MD/VA Lupus Tip of the Week - Lupus Oral Manifestations or Oral Cancer?

Mouth ulcers and sores located on the inner cheeks and lip commonly affect lupus patients. Most often, these manifestations resemble a red plaque area with a white border. Whether asymptomatic or irritating, ulcers and sores are treatable. Candidiasis, another common lupus oral feature, is also known as "thrush," a white fungal infection associated with medications, dry mouth, or poor oral hygiene.

In contrast, oral cancer most often occurs on the tissues of the lip or the tongue, but also found on the inner cheeks, or roof and floor of the mouth. Cancer sores start as a white plaque, known as leukoplakia, or a mouth ulcer. Other cancerous symptoms include abnormal taste, difficulty swallowing, and tongue problems.

Having lupus is NOT a risk factor for oral cancer. However, it is imperative not to mistake a common oral sore for an oral cancer sore. When you have a mouth sore or lesion due to lupus or other factors, they usually disappear within two weeks. Oral cancer does not. Call for an appointment with your dentist or healthcare provider if you have a lesion or sore of the mouth that does not go away within one month.

My Lupus Now Magazine Feature!

Joy Comes in the Mourning has recently been added to the Lupus Foundation of America, Inc's (LFA) Recommended Reading List and was featured in the summer 2010 issue of Lupus Now Magazine!

A portion of the proceeds from each sale is donated to the LFA DC/MD/VA Chapter. Please consider making a donation to the LFA. Your tax deductible contribution can help bring us closer to a cure. The LFA is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. Visit http://www.lupus.org/  to donate today.

Joy Comes in the Mourning: A "Novel" Approach to Raising Awareness of Lupus

List Price: $23.99
Paperback: 332 pages
Publisher: Tate Publishing & Enterprises, LLC (Dec. 2009)
Language: English
ISBN: 978-1-61566-111-4




I had a two-fold mission in mind when I began writing my debut novel, Joy Comes in the Mourning:

1. To raise awareness of a real and serious chronic autoimmune disease, and
2. To encourage readers that God has purpose behind, presence during, and preservation after EVERY storm that comes their way.

Dealing with the death of a loved one is never easy, no matter how old you are. But when you are a child, and the surviving parent chooses to express their grief by "checking out" and becoming emotionally unavailable, life is made that much harder.
Joy Comes in the Mourning focuses on Tonya Monroe, a young woman who lost her mother at the hands of a drunk driver when she was only 14 years-old. Tonya's tragedy was compounded by the revelation that a close family friend, Carolyn Wright, was responsible.
Tonya's father expressed his grief by drinking and becoming emotionally detached from her. Subsequently, she grew up believing that she didn't need anyone. It's not until Tonya is diagnosed with Systemic Lupus Eerythematosus that she realizes life is beyond her control.
Carolyn has problems of her own. She is faced with drama, drama, and more drama. She walks in from work one afternoon to find a female church member, who has been after her husband for years, "helping out" in the kitchen. She and Tonya have a knock-down drag-out at work. And she becomes the subject of scandal at church when her Friday night intercessory prayer meeting goes off course.
When Tonya's health rapidly begins to deteriorate, she feels that Carolyn is the only one she can turn to. But where does she find solace when, on the morning of her kidney biopsy, Carolyn feels the need to come clean about what really happened the night her mother was killed?
Well, you have to buy the book to find that out. However, know this: God's Word is true! ALL THINGS WORK TOGETHER FOR GOOD TO THEM THAT LOVE GOD AND ARE CALLED ACCORDING TO HIS PURPOSE.
I don't care what seems to be going wrong in your life. It's just right for you. Accept what God allows because He knows what HE's doing. If you TRUST and BELIEVE that the outcome will be in your best interest because it's to serve a purpose, God can turn your mourning into Joy...in spite of your circumstance!
On His Time, In His Name, For His Glory
You're more than welcome to read an excerpt of my debut novel. Click here to learn more about lupus.