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Your JA Action Plan

Learn how your doctor will treat your JA.

By Anne Krueger

Staying well when you have JA can be a challenge, especially as you get older and your life gets more complicated. But you have a whole team of people who are ready and willing to help. And knowing the score and keeping organized can help. Here are a couple of things 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 good – and not just once a year. If your eyes are at risk or have been affected, you may go to the eye doctor several times a year to get them checked, too.

What that means day to day:
•   Lots of doctor appointments. You may have to schedule some of your school or sports activities and social stuff around your doctor visits. And you’ll want to start taking some responsibility for knowing when the appointments are and how you’re going to get there. Log the appointments in your phone or in an appointment book.

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

Needles, and pills and infusions, oh my!
As you probably know, medications of various forms can make a huge difference in your quality of life when you have JA. 
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.” Again, keeping track of your medications and knowing what they do may help you feel some kind of control. Down the road, when you leave home to go to college or live on your own, you’ll want to have had some practice handling your medications.

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 that can wear you down. It can be so frustrating that there is nothing you can do to speed up the process or find the magic pill. It may comfort you to know that research is going on to find new treatments for juvenile arthritis [link to some research part of site?]

Moving hurts, so let’s get moving …
For those who’ve had JA for a while, you may be familiar with the idea that you have to move even when you hurt. Most doctors prescribe range-of-motion exercises to keep joints flexible and strengthening exercises to keep muscles strong to support them. Even if a joint has not been working properly for a while, exercise can be beneficial.
What that means day to day:

•  Your doctors may give you therapeutic exercises to do every day. These special movements will help the joints that bother you and may be specific to actions or activities that sometimes bother you, like getting dressed or holding a pencil. You’ll have to schedule these into your day just like you schedule studying for the SAT, sports and clubs, and social time.
•  If you’re able, you may want to try joint-friendly exercise like swimming or biking. You may have to resign yourself to the fact that you can’t do weight-bearing exercises like running hurdles or competitive gymnastics. Those are very hard on joints.    

When Operation is not a game
Most teens with JA don’t need surgery. But if your joints have been badly damaged by the disease, surgery may be improve your quality of life. Doctors can remove inflamed tissue that can’t support a joint. They can even replace very badly damaged joints.
What that means day to day:
•  If you have to have an operation, you’ll sleep through 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’ll have less joint pain. Caitlin Ryan felt fantastic after her hip joint replacement surgery.
•  Some types of surgery help you move better, while joint fusion actually fuses joints together to prevent them from moving and causing more damage and pain.
•  You may be able to do your homework and studies from home while recovering from surgery. You and your parents will want to talk with your school to work out the details before scheduling the operation.

 

 

About Me: Stories by Teens With JA

 
Drake M.

Drake M., Age 14

I am a wrestler, football player and I do everything else any other 14 year old boy does.

Read Drake M.'s Story
 
Crystal

Crystal, Age 13

Hi, I'm Crystal. I was diagnosed with JIA (Juvenile Idiopathic Arthritis) almost 2 years ago.

Read Crystal's Story
 
See All Stories by Teens With JA
 
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Your JA Action Plan

Learn how your doctor will treat your JA.

By Anne Krueger


Staying well when you have JA can be a challenge, especially as you get older and your life gets more complicated. But you have a whole team of people who are ready and willing to help. And knowing the score and keeping organized can help. Here are a couple of things 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 good – and not just once a year. If your eyes are at risk or have been affected, you may go to the eye doctor several times a year to get them checked, too.

What that means day to day:
•   Lots of doctor appointments. You may have to schedule some of your school or sports activities and social stuff around your doctor visits. And you’ll want to start taking some responsibility for knowing when the appointments are and how you’re going to get there. Log the appointments in your phone or in an appointment book.

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

Needles, and pills and infusions, oh my!
As you probably know, medications of various forms can make a huge difference in your quality of life when you have JA. 
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.” Again, keeping track of your medications and knowing what they do may help you feel some kind of control. Down the road, when you leave home to go to college or live on your own, you’ll want to have had some practice handling your medications.

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 that can wear you down. It can be so frustrating that there is nothing you can do to speed up the process or find the magic pill. It may comfort you to know that research is going on to find new treatments for juvenile arthritis [link to some research part of site?]

Moving hurts, so let’s get moving …
For those who’ve had JA for a while, you may be familiar with the idea that you have to move even when you hurt. Most doctors prescribe range-of-motion exercises to keep joints flexible and strengthening exercises to keep muscles strong to support them. Even if a joint has not been working properly for a while, exercise can be beneficial.
What that means day to day:

•  Your doctors may give you therapeutic exercises to do every day. These special movements will help the joints that bother you and may be specific to actions or activities that sometimes bother you, like getting dressed or holding a pencil. You’ll have to schedule these into your day just like you schedule studying for the SAT, sports and clubs, and social time.
•  If you’re able, you may want to try joint-friendly exercise like swimming or biking. You may have to resign yourself to the fact that you can’t do weight-bearing exercises like running hurdles or competitive gymnastics. Those are very hard on joints.    

When Operation is not a game
Most teens with JA don’t need surgery. But if your joints have been badly damaged by the disease, surgery may be improve your quality of life. Doctors can remove inflamed tissue that can’t support a joint. They can even replace very badly damaged joints.
What that means day to day:
•  If you have to have an operation, you’ll sleep through 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’ll have less joint pain. Caitlin Ryan felt fantastic after her hip joint replacement surgery.
•  Some types of surgery help you move better, while joint fusion actually fuses joints together to prevent them from moving and causing more damage and pain.
•  You may be able to do your homework and studies from home while recovering from surgery. You and your parents will want to talk with your school to work out the details before scheduling the operation.