A definition of Juvenile Scleroderma in simple, easy to understand language
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Brain Power!
By Issadora Saeteng with assistance from
Vanessa Malcarne, Ph.D., San Diego State University
2005

Dealing with a chronic illness like Scleroderma can lead to feelings of being out of control, being confused about what is happening, and worries about the future. In reality, everyone has these feelings to some degree, but for those of us with these ongoing illnesses, it is sometimes more in our awareness than for others.

There are many different symptoms we experience, but one common sensation we all deal with is pain. It can be pain from the disease, pain from tests and procedures, and even emotional pain from having to deal with the illness in addition to the demands of school, activities - the list goes on. Yet, even in the case of pain, where there seems to be so little we can control, much can be gained by using the powers of the mind. While there are a lot of medications to treat pain, the side effects are usually unpleasant along with a host of other problems. Besides, who wants MORE medicine!? Even for those of us that do take medications to manage pain, many times we still need more relief. The good news: There is hope!

There are techniques that allow you to use your brain power to help manage different types of pain. What do I mean by brain power? Brain power is when we use our brain, the powerhouse manager of our body, to help manage pain and other challenges. You can use your brain to create distraction from pain and reduce the intensity of it. Also, you might be able to calm anxiety over painful procedures, test and other difficulties.

How do I use my brain power to help with pain? One of the first major steps in is learning to breathe. I know you’re thinking, “What do you mean, I need to learn to breathe - I already know how to breathe!” While we all can breathe, most of us have unlearned the way we breathed as babies. Ever watch a baby or toddler breathe, with their little tummies sticking out, moving up and down? That is deep breathing, and it’s something we seem to forget how to do as we grow up. As we get older, we have the tendency to breathe more in our chests. Check it out by placing a hand on your tummy and on your chest. Breathe normally and see which hand moves most. Now try breathing through your nose if you can, or at least try to breathe from deeper in your stomach (from your diaphragm) and you’ll see that your stomach will move up and down, rather than your chest and shoulders. This way of breathing is good for your lungs and is calming. Try taking several breaths like this and counting slowly as you breathe in and out. This is a quick method for calming down your pain and tension. Many times when we feel and/or anticipate pain, we tense up, breathe in a shallow way, and tighten up our muscles - this all can increase the pain feelings! Breathing slowly can help stop this reaction.

Another thing you can do is use your brain power to travel to other places. After calming your self with breathing, close your eyes and imagine a calming place like the ocean, mountains, camp - whatever makes you feel happy and relaxed - and think about what you see and feel, and how it looks and smells. Pretty soon, you are off on a bit of a vacation in your mind. If you have trouble doing this by yourself, people can help you guided imagery by assisting you in your adventure – they can describe a calming place while you sit back with your eyes closed and practice your deep breathing. Sometimes tapes can also have imagery to help you. It’s similar to having a blank sheet of paper and deciding what you want to draw or having someone ask you to draw a house or the ocean, etc. It is still your paintings or drawing but someone else can help you with suggestions along the way. Find what works for you!

Finally, you can use your brain power for distraction to work through medical procedures and other painful situations. Distraction means using your mind to concentrate on something besides the pain or procedure. Distraction is often used in many hospitals through video games, virtual reality, and story telling. Many times, it helps to have someone to help you with distraction but you can also do it yourself by focusing on a picture, a favorite stuffed animal, watching television, doing a puzzle, or anything else you think might help take your attention away from painful sensations. You can talk with your doctor, nurse, or other people who are helping you with your scleroderma about different ways of distracting yourself during painful medical procedures. Sometimes they will have good ideas about how they might help to distract you.

So, as you can see, there are lots of different ways to use your brain power to help deal with pain. Some people like to use mental imagery while others use counting, music, and other methods. You have to experiment to find what’s best for you. You can even buy CDs or tapes that help teach you how to relax and distract yourself, and also people like psychologists and social workers can teach and create tapes individualized to your pain management needs.

While the above methods might not take all of the pain away, they can make it more manageable.  Like anything else, the more you practice, the easier it is. From my own personal experience, I have a love for space, and I have pictures from NASA, photographs of older space shuttles and Hubble telescope findings. When I go to sleep at night and wake up, I look at my pictures next to my bed and imagine going into space. I do my breathing and think about how it might feel to be an astronaut. These brain power adventures helped me through many nights of pain and mornings of stretching so I could go to school each day. Also, I have been able to use poetry, painting, drawing, and journaling to help me deal with my pain. I often listen to music when I am getting painful tests or physical therapy to give my mind another place to focus besides what’s happening to me.

 I hope these ideas help you use your brain power to manage pain too!


Helpful resources about pain management:

The National Pain Foundation site on pediatric pain: http://www.nationalpainfoundation.org/MyTreatment/articles/
Pediatric_General_Pain.asp

Arthritis- New South Wales:
http://yawa.arthritisnsw.org.au/jra/pain.html

Bandaides and Blackboards (just a fun site for kids/adolescence/adults with chronic illness and also had pain management activities
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/contkids.html

Pain and your child or teen: (University of Michigan health care system) site with multiple types of pain management tools and links on distraction, breathing, art therapy and more:
http://www.med.umich.edu/1libr/yourchild/pain.htm


Issadora Saeteng is a health journalism intern completing her fourth year at the University of California, San Diego, where she is majoring in Human Development. Issadora has juvenile onset rheumatic disease, and is planning a career in Counseling Psychology. Issadora works with Dr. Vanessa L. Malcarne, Professor in the Department of Psychology at San Diego State University.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.


For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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