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Your JA Action Plan

What you can do to help yourself feel better.

By Anne Krueger

Staying well when you have JA can be a bit like keeping track of those moving staircases in Hogwarts. There’s a lot to keep your eye on! But you have a whole team of people who are ready and willing to help! And keeping organized can help. Here’s what to keep in mind.

Hello Doctor, you again?
If you have JA you are well aware that you go to the doctor even when you’re feeling better – and not just once a year. If your eyes are affected by your disease, you may go to the eye doctor several times a year to get them checked, too.
What that means day to day:

•  Doctors, doctors, and more doctors! To help you keep track of visits, get a giant calendar for your wall where you can keep track of all of your appointments (and anything else related to the management of your JA). Some kids like to have a personal appointment book that they carry around with them or, if they’re older, a phone where they keep track of appointments.

Read this for a review of what happens at the doctor’s office.

Needles, and pills and infusions, oh my!
You will probably take more than one medicine to treat your arthritis. Some medications come as pills or liquids. Others have to be given as shots. That might sound scary, but believe it or not, many kids learn to give themselves their own shots. That sometimes makes it easier because you’re in charge. Others are given at the doctor’s office. Some ease your pain and swelling and lower your fever, others keep JA from hurting you and your joints.
What that means day to day:
•  You may feel like a human drug store. Taking pills, drinking liquids, or getting a shot every day or week. Keep telling yourself: “This is good for my JA. This is good for my JA.”

Now let’s try this
If you’ve had JA for a while you know that treating JA is not easy. Some treatments don’t work right away. You may try several different treatments before you feel better. They might give you an upset stomach, a headache, or make you feel dizzy.  
What that means day to day:
•  One day it might feel like a medicine is working, the next day you might feel worse. It’s a real trial-and-error process (meaning try it, see if it works, if not, try something else, see if it works … ) that can wear a kid down. It can be so frustrating that there is nothing you can do to speed up the process or find the magic pill. Hang in there!  

Moving hurts, so let’s get moving … huh?
Even though movement may hurt, your doctors may want you to exercise to keep you strong and flexible. It’s actually one of your “treatments.” After a while, it will hurt less to move.  
What that means day to day:
•  Your doctors may give you specific exercises to do every day. These special movements will help the joints that bother you. You may have to do these with a parent or a therapist. You’ll have to schedule these into your day just like you schedule in homework and your favorite TV show or computer game!
•  If you’re able, you may want to add joint-friendly exercise like swimming or biking. Even though this is “good for you,” make it fun: invite friends! The more you can make being healthy a habit, the better you’ll feel. And finding something you love to do is also good for your health. Hanna S., for example, loves to ride horses!
•  Meagan C. can remember being in pain. Not being able to walk. Being called an oddball. But since getting treatment for JA, she’s finished 11 half marathon and one full marathon. She didn’t let JA stop her from exercising, so don’t let it stop you!

When Operation is not a game
Most kids with juvenile arthritis don’t need an operation, or surgery, but some do.
What that means day to day:
•  If you have to have an operation, you will be asleep during it. Many operations can be performed quickly. Others may require a few nights in the hospital. After it’s over, you may hurt for a while. But once you heal, you will have less joint pain.          

Caitlin Ryan had hip joint replacement surgery. It’s not for every child but it has made all the difference for her. She now feels a lot less pain and is dancing!

 

 

About Me: Stories by Kids With JA

 
Beth B.

Beth B., Age 10

Hi my name is Beth. I am 10 years old and live in Big Rapids, Michigan.

Read Beth B.'s Story
 
Kiyah H.

Kiyah H., Age 8

My name is Kiyah and I have polyarticular JRA.

Read Kiyah H.'s Story
 
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Your JA Action Plan

What you can do to help yourself feel better.

By Anne Krueger


Staying well when you have JA can be a bit like keeping track of those moving staircases in Hogwarts. There’s a lot to keep your eye on! But you have a whole team of people who are ready and willing to help! And keeping organized can help. Here’s what to keep in mind.

Hello Doctor, you again?
If you have JA you are well aware that you go to the doctor even when you’re feeling better – and not just once a year. If your eyes are affected by your disease, you may go to the eye doctor several times a year to get them checked, too.
What that means day to day:

•  Doctors, doctors, and more doctors! To help you keep track of visits, get a giant calendar for your wall where you can keep track of all of your appointments (and anything else related to the management of your JA). Some kids like to have a personal appointment book that they carry around with them or, if they’re older, a phone where they keep track of appointments.

Read this for a review of what happens at the doctor’s office.

Needles, and pills and infusions, oh my!
You will probably take more than one medicine to treat your arthritis. Some medications come as pills or liquids. Others have to be given as shots. That might sound scary, but believe it or not, many kids learn to give themselves their own shots. That sometimes makes it easier because you’re in charge. Others are given at the doctor’s office. Some ease your pain and swelling and lower your fever, others keep JA from hurting you and your joints.
What that means day to day:
•  You may feel like a human drug store. Taking pills, drinking liquids, or getting a shot every day or week. Keep telling yourself: “This is good for my JA. This is good for my JA.”

Now let’s try this
If you’ve had JA for a while you know that treating JA is not easy. Some treatments don’t work right away. You may try several different treatments before you feel better. They might give you an upset stomach, a headache, or make you feel dizzy.  
What that means day to day:
•  One day it might feel like a medicine is working, the next day you might feel worse. It’s a real trial-and-error process (meaning try it, see if it works, if not, try something else, see if it works … ) that can wear a kid down. It can be so frustrating that there is nothing you can do to speed up the process or find the magic pill. Hang in there!  

Moving hurts, so let’s get moving … huh?
Even though movement may hurt, your doctors may want you to exercise to keep you strong and flexible. It’s actually one of your “treatments.” After a while, it will hurt less to move.  
What that means day to day:
•  Your doctors may give you specific exercises to do every day. These special movements will help the joints that bother you. You may have to do these with a parent or a therapist. You’ll have to schedule these into your day just like you schedule in homework and your favorite TV show or computer game!
•  If you’re able, you may want to add joint-friendly exercise like swimming or biking. Even though this is “good for you,” make it fun: invite friends! The more you can make being healthy a habit, the better you’ll feel. And finding something you love to do is also good for your health. Hanna S., for example, loves to ride horses!
•  Meagan C. can remember being in pain. Not being able to walk. Being called an oddball. But since getting treatment for JA, she’s finished 11 half marathon and one full marathon. She didn’t let JA stop her from exercising, so don’t let it stop you!

When Operation is not a game
Most kids with juvenile arthritis don’t need an operation, or surgery, but some do.
What that means day to day:
•  If you have to have an operation, you will be asleep during it. Many operations can be performed quickly. Others may require a few nights in the hospital. After it’s over, you may hurt for a while. But once you heal, you will have less joint pain.          

Caitlin Ryan had hip joint replacement surgery. It’s not for every child but it has made all the difference for her. She now feels a lot less pain and is dancing!