Take Charge
Taking charge of your own medical care sounds like a vague concept. But there are plenty of specific things you can do to make it happen. Check out these ideas and try out those you feel comfortable with to work toward gaining more independence.
Keep track of your medical care.
Throughout your life, you’ll be asked about your medical history. So there’s no time like the present to start keeping track of it. 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 information, so you may want to create a chart or your own special system.)
In addition to keeping a medical history, you may want to keep a health diary, too. You can use it to track your physical and emotional health, and write down questions for your doctors. Changes in the way you feel from day to day may be a sign that your JA is changing. Your doctor will want to know about that so he or she can figure out what’s going on.
Manage your own medications.
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.
Make your own phone calls and send your own emails.
There are plenty of reasons to contact your doctors. Maybe you want to get lab results. Maybe you have a question. Maybe you’d just like to schedule an appointment. Start handling some of these calls and emails yourself. If you’re making appointments, though, check with your parents first. After all, you don’t want them to double-book you and you may need a ride. Also, some doctors have a policy that you must have an adult with you if you’re under age 18.
See your doctors alone.
If you haven’t done this before, it may seem a little scary. But seeing doctors alone for at least part of your visit is really a great opportunity. It will give you a 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.
Get involved in finding adult doctors.
Your pediatric rheumatologist won’t be your doctor forever. Once you turn 18, 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.
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