| Things that I have learned |
| I have learned many things since my daughter's diagnosis. I want to share some of the more important lessons with you. |
| Don't always assume that Dr's are "Gods". Because they are not. They are human just like you and I and have a degree of human error intact, just like you and I. Your Dr. should be willing to listen to you and if he/she is not, then it's time to find a Dr. that will. You are your child's only advocate and you need to make yourself be heard. Remember, it is the "squeeky-wheel" that gets the oil. Know that there is NOTHING you or I did to cause our children to have JRA. Blame is a tremendous hurdle that I have had to overcome in order to get the best care possible for my daughter. There are still times that I feel some how responsible for my child's illness...although I know this isn't true. READ!! And research everything you can get your hands on. The more I learned about JRA the less intimidating it was to me. By educating yourself you will be more able to get the best care for your child. Two books I have read cover-to-cover are: 1) "Raising A Child with Arthritis" published by the Arthritis Foundation 2) "Your Child With Arthritis, A Family Guide for Caregiving" published by Johns Hopkins Press Also, contact your local Arthritis Foundation or local American Juvenile Arthritis Organization (AJAO). They will send you information. Educate yourself on the medications used to treat JRA. Know the side effects. Ask your rheumatologist to tell you about new medications being researched. If you have questions for the rheumatologist, make a list of those questions for easy reference during the next appointment. Make sure he/she answers all of your questions thoroughly and in a language/manner that you understand. If you don't understand the answers, keep asking them until you do understand. A good rheumatologist will take the time to listen to you and help you in understanding your childs disease. Allow yourself to feel ALL of the emotions that enter your life. There is a reason and a lesson to learn from every emotion and every tear shed. By not allowing yourself or trying to pretend you are "OK" will only work for a little while. Then, one day it will all come crashing down on you. Never lose sight of who you are...the person you were before JRA. Don't let JRA be the focal point of your life. That isn't fair to yourself or to your child. And, most importantly, know that you ARE NOT alone. Thousands...millions of parents in this vast world are feeling exactly the way you feel right now. Me included. |
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| All Graphics provided by Grace Lee at www.cutecolors.com |
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