You probably have a few years yet before you fly the coop and are away from home, either living on your own or at college. Even then, you’ll have a huge team of people who have your back. As you’re leading up to that time, you can ease into taking a bit more responsibility for the management of your JA, just as you’re easing into taking care of other things in your life – perhaps you have a job or are responsible for a car.
Eventually, you’ll be the captain of your JA team. To get there, you can start doing (or at least thinking about!) these things:
1. Be prepared. Carry your insurance card and a list of important information with you. Your list should include: your parents’ telephone numbers, your doctors’ telephone numbers, a list of the medicines you take, and a list of anything you are allergic to.
2. Pay attention. When you’re at your doctor appointments, listen to what’s being said. All of those appointments can be soooo boring, but this is your body and disease those people are yakking about so tune in! The more you know – the name of your disease, the parts of your body it affects, the names of the drugs you’re taking, the reason you’re doing the exercises – the more you can be part of the conversation as you get older.
3. Keep track. Throughout your life, you’ll be asked about your medical history. A lot. Repeatedly. Trust us on this. So now is the time to start keeping track of it. The method is up to you: Use a notebook or create a folder on your computer to record your information. Start with your general medical history. Include dates indicating when symptoms began, when you were diagnosed and what type of JA you have. If your parents kept records of your treatments over the years, incorporate those into your own notes.
Bring your history up to the present with medications you take, any side effects you’ve experienced, allergies, tests and results, special procedures and surgeries, notes from your doctor visits, treatments, etc. Include dates to keep an accurate history, and update the information after each doctor visit. Also include contact information for each of your doctors. (It’s a lot of info, so you may want to create a chart or your own special system.)
4. Take notes. You are not just your disease. You’re a living, breathing, FEELING human being. So, it might be smart to keep a journal to jot down how you’re feeling, whether you’re particularly frustrated or sad. This is also a great place to make a note of questions you want to ask any of your doctors.
5. Manage your meds. Start by getting organized. Use a notebook, your computer, or your cell phone. List the names and dosages of your medications, why you take them, and how often you need to take them. Set watch or phone alarms, text reminders, or email alerts to remind you when it’s time. Fill a pill container with your medications each week. Also keep track of prescriptions so you can make sure they’re refilled before they run out. If you take injections, learn to prepare and perform them yourself, or make appointments for your infusions. Keep your parents in the loop every step of the way, so they won’t worry and they’ll know you’re on top of things.
6. Be your own secretary. Make your own phone calls and send your own emails to your doctors. You might have a question or need to request a lab result or want to schedule an appointment. Whatever. After checking with your parents, take over the handling of some of these calls and emails yourself. Remember, some doctors have a policy that you must have an adult with you if you’re under age 18.
7. See your doctors alone. If your doctor allows you to have an appointment without your parents present, use that chance to talk privately and bring up concerns you might not want to discuss with a parent in the room. Some subjects may be uncomfortable to talk about, but it’s important to always be honest with your doctors – and remember, they’ve heard it all. Everybody freezes up or forgets what to ask sometimes, so just write down your questions ahead of time and refer to your notes.
8. Get involved in finding your next doc. Your pediatric rheumatologist won’t be your doctor forever. Once you turn 18 or go off to college, you may need to see a doctor who treats adult patients. You’ll also want a general practitioner who treats adults. You can ask your current doctors for referrals to get you started. Think about what you want from your future doctors. Do you want someone who’ll spend plenty of time with you during regular visits? Are you hoping the doctor will be willing to chat with you by email? Make a list of the questions you’d like to ask different doctors before making your selection. Shop around for a doctor that you feel comfortable with. There are more adult rheumatologists than pediatric rheumatologists around, so you may have more choices.
9. Learn how your health insurance works. The subject of health insurance makes most adults run shrieking from the room, so this may not be the most pleasant topic. But it’s a super-important one. Do you know the name of your provider (the insurance company) and the name of the subscriber (the person in your family who pays for the insurance)? If not, arm yourself with information.
Ask your parents for these details and while you’re at it, find out how copayments and referrals to specialists are handled. Even if you don’t understand everything you hear, it’s a good idea to start having these kinds of conversations. As you get older, you’ll need to consider what you’ll do for insurance once you’re no longer eligible to stay on your parent’s policy (after age 26).
10. Be as healthy as you can be. Everybody wants to be as healthy as possible, but you have an extra reason. You need the right fuel – nine hours of sleep, nutritious food, your meds, exercise – to keep you in tiptop shape.
11. Find out about support resources. By now we hope you know that asking for help is a sign of strength, not weakness. If you haven’t been able to ask for the help you need at home at school in high school, it doesn’t bode well for college, where you’re going to have to think about things like dorm staircases and health services! ASK for help. Ask your parents, your doctors, your counselors, your school. If you’re going to college, talk to the school in advance so that you have everything figured out. Then, you’ll be good to go!