Your Transition Toolkit

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Table of contents

• Your Transition Toolkit

• • How to Make and Prepare for your Doctor's Appointments

• • Filling Prescriptions

• • Nutrition and Arthritis

• • College Tips for Young Adults with Juvenile Arthritis

Your Transition Toolkit

For Kids, Teens, and Young Adults

Life is full of changes….some are small while others are REALLY BIG.
Bigger changes are often called TRANSITIONS.

Examples of transitions are: starting or changing schools, graduating from high school, moving away from home, getting a job, moving from one place to another, changing doctors, getting married, or having children.

One of life’s most complicated transitions is moving through the teen years into adulthood. Challenges include: figuring out how to make your own decisions and be your own person, learning to manage your health, and deciding how you want to live and what you want to do as an adult. If you are reading this, YOU are getting ready to become an adult.

Transition to adulthood is also a very exciting time! You will have more chances to be independent, try new things, meet new people, and become your own person! It can also be scary because of so many changes and new responsibilities.

There are many important questions to ask as you prepare for transition:

• What do I want to do after high school?

• How will I stay healthy to have the life I want?

• How will I find adult doctors?

• How will I care for my condition on my own?

The purpose of this toolkit is to provide you with a travel guide to help you plan this exciting “road trip” or “adventure” called transition to adulthood. It will help teach you the skills you need to become independent and reach your goals. It will also help you learn about resources that
are available to help you.

Life is always an adventure, and we wish you the best!

–The Arthritis Foundation Transition Team

Your Transition Timeline

How to Make and Prepare for your Doctor's Appointments

It’s time to start making your own doctor’s appointments! Calling a doctor’s office for the first time can be stressful. But if you prepare for the call by following these steps, making an appointment on your own will be easy!

1. Watch your parent make an appointment.

2. Use the form below to prepare what you will say, and practice with your parent.

3. Have a calendar ready and know what appointment dates will work with your school schedule and other activities you are involved in.

4. Have all the information that you will need to make the appointment, including your date of birth, your insurance provider and the reason you need the appointment.

5. Sometimes you may have to wait on hold for few minutes before you can schedule your appointment. Call during a time when you will not be in a hurry, and can wait if needed.

6. Use the script below to make your phone call and schedule the appointment.

7. Record your appointment date and time to be sure that you remember it…in a calendar, on your phone, or in a notebook.

8. Don’t forget to prepare for your appointment:

   1. Bring a list of the medicines that you take regularly, including how much you take and when you take them. Or, bring your medicine bottles with you to the appointment.
   2. Bring your insurance card.
   3. Prepare and bring a list of questions for your doctor.

How to Make an Appointment – Sample Script

"Hello, my name is ___________________________" (Tip: Use your first and last name)

"I need an appointment to see Dr. ____________________"

"Because ________________" (Example: "I need a check up, my knee hurts, I have a rash.")

"How soon can I get in?" ___________________ (Write date and time here)

       Note: If the date and time is ok, just say, "Thank you, that will be fine."

       If not, just say, "That won't work for me, can you look for something else?"

Before you end the phone call, repeat the date and time of your appointment back to them. Don't forget to write down the appointment so you won't forget it!



Sometimes you may be told that you have to wait several weeks for an appointment. But if you are feeling sick, remember to ALWAYS leave a message for your health care provider to let him or her know. They can help you to get a sooner appointment if needed.

After a visit with your provider, put a reminder in your calendar or phone so you’ll remember when you need to call to make your next appointment. If you need to get lab tests checked between appointments, make sure to put a reminder in your calendar or phone for that, too!

    Adapted from http://internet.dscc.uic.edu/dsccroot/parents/milestones_teens.asp

Do your HOMEWORK!

Choose one of the following activities to improve your appointment-scheduling skills!

• Assignment #1: Schedule your own appointment using the instructions and script above. Make sure you have a calendar or other place to record the appointment. If you’re nervous, have your parent listen in on speaker-phone while you make the call.

• Assignment #2: Check in to your doctor’s appointment on your own. Tell the receptionist that you are here for your appointment, what time your appointment is scheduled, and which doctor you are going to see. Answer any questions that the receptionist has – he or she may ask for your birth date, home address, phone number, or other information. Make sure to bring your insurance card with you.

Filling Prescriptions

Uh oh…looks like your medication bottle is almost empty. What do you need to do to get more pills before you run out?

Has your doctor included refills on your prescription? Check the label on the bottle. If the lable shows a number next to the "refills" section, that's how many times you can get more of your medicine without calling your doctor's office.

There are several ways to refill your prescription:

• In person. Go to the pharmacy where you originally filled your prescription and either way for it or come back to pick it up at a later time.

• By phone. Use the pharmacy's phone number listed on your medication bottle to call in your refill. Most large pharmacies or chain stores have automated menus that you can use any time, day or night (thought of course you'll have to wait for store hours to pick up your refill). The voice prompts will lead you through the process. At smaller pharmacies, you may speak to the pharmacist or pharmacy technician directly.

• Online. If your pharmacy lets you reorder a prescription online or through a mobile app, you may still have to go to the store to pick it up.

• By Mail. People who take medication regularly (such as every day to manage a health condition) can sometimes refill prescriptions by mail. This option is convenient because you can often get your medication in batches (say, a 3-month supply of allergy pills) if you doctor gives you a prescription for that amount. Ask your doctor about this option. If you want to use the mail-order option, you'll need to plan ahead since it may take up to 2 weeks to receive your medicine.

If your prescriptions are covered by health insurance, be sure to tell the pharmacy if your insurance has changed since you last filled your prescription. If you're not sure about the cost of your medication or the co-pay, ask.

Use the Label

No matter how you choose to refill a prescription, it will be easier if you have all your prescription information handy. Most of what you need is printed on the label.

The prescription label is usually wrapped around the medicine bottle. In some cases — especially with medicines like eye drops and skin creams — it may be stuck on the outer box instead. Check the box when you first get your prescription so you don't throw it out by mistake.

What if you know your prescription is refillable but you threw the carton away? You may have to go in person to the same pharmacy where you first got the prescription and ask them to look it up in their database. They'll probably ask for ID and want to see your prescription card before giving you a refill.

Here's what to look for on the label:

• Pharmacy phone number. This is the number you'll call to place the refill.

• Prescription number. This number is often shown on the label as "Rx#". Although a pharmacist can look up your prescription in the computer, the refill process will go a lot faster if you have this number handy.

• Refills remaining. The prescription label will tell you how many refills you have left. Most labels show a number of refills with a cutoff date. If you refill your prescription before that date, you should be able to place your order with no problem. However, if the label says something like "Refills require authorization" or if your refills have expired,
  you'll need to get in touch with the doctor who prescribed the medication. Sometimes the pharmacy can do that for you, but other times the doctor will want to see you or talk to you before authorizing the pharmacy to refill the prescription.

Make Sure You Don't Run Out

Probably the trickiest part about refilling a prescription is remembering to check when you're running low. If you wait until you've taken your last pill to place your refill, and for some reason end up having to wait for it, it could be a mere annoyance — or a major ordeal. Missing even
one daily dose of some medications can be dangerous.

On the flip side, if you try to get a jump on things and place a refill weeks in advance, your insurance might not cover it. So keep your eye on the bottle and try to time your refill so the pharmacy has a few days to get things ready for you — especially if they're going to need to
contact your doctor. Refilling a pill box once a week is an easy way to stay on top of whether you have enough pills to get through the week.

Talk to the Pharmacist

When you pick up your refill, you'll probably be asked if you have any questions for the pharmacist. This is a good time to go over how you should be taking the medication — such as whether you should take it with or without food. If you're at all unsure about your medication, ask to see the pharmacist. Most pharmacies ask you to sign a "waiver" if you don't have
questions.

Since you've already been taking the medication for a while, you might have noticed side effects. For example, does your naproxen give you a stomachache? Do you notice headaches after using your prescription eye drops? These are all good things to mention to your pharmacist
— especially as people can sometimes notice new side effects even after they've been taking a medicine for many years.

When you pick up your prescription, let your pharmacist know if you've started using any new medications. Even over-the-counter medications (like cold medicines) or herbal supplements can sometimes affect how well prescriptions work or interact with prescription medications to
cause health problems.

If the pharmacy seems busy or you don't want to ask about something personal (like birth control) in front of other people, call and ask to speak to the pharmacist after you leave. Mention that you just refilled your prescription and have questions. No matter how busy they are, pharmacists are still willing and eager to help — it's their job to make sure people take their medications safely and effectively.



Adapted from http://kidshealth.org/teen/yourbody/healthbasics/rx_refills.html

Do your HOMEWORK!

Choose one of the following activities to improve your medication-refill skills!

• Assignment #1: Call the pharmacy to request a refill on your prescription the next time you need it. Make sure to have your bottle ready so you can give the pharmacist all the information he or she needs. If you’re nervous, have your parent listen in on speaker-phone while you make the call.

• Assignment #2: Pick up your medication by yourself. If someone needs to drive you to the pharmacy, ask him or her to wait while you go up to the counter by yourself. Think of one question to ask the pharmacist about your medication when you pick it up. Examples of questions for the pharmacist could be, “Should I take this medication with food?” or “What is a common side effect of this medication?"

Nutrition and Arthritis

The quest for a healthy diet isn't an easy one. Talk to almost any person and you'll probably hear about foods they do and do not like. Throw arthritis into the mix and navigating toward sound nutrition can become much more difficult.

“It’s critically important that kids with juvenile idiopathic arthritis (JIA) get proper nutrition, but it can be more challenging because the kids’ appetites may be suppressed by the disease itself or by the medication they take,” says Daniel Lovell, MD, director, Division of Rheumatology at the Cincinnati Children's Hospital Medical Center.

Joint pain, fatigue, nausea and stomach pain all can take their toll on normal hunger cues. Kids and teens with jaw pain or temporomandibular joint disorder (TMJ) may have difficulty chewing or swallowing food.

Mechanical problems may come into play too, since cutting up and handling food may be hard for those with arthritis in the hands, fingers and wrists.

“One example is that children in school may not be able to open their milk cartons,” says Barbara Warady, RD, senior clinical nutritional specialist at Children’s Mercy Hospital in Kansas City, Mo. “They may not want to tell anyone that they can’t open them so as a result they just don’t drink the milk.”

When kids and teens with arthritis don’t eat enough to meet their nutritional needs they can become more vulnerable to other problems. Poor growth can certainly be caused by the disease or exacerbated by medications like long-term steroid use. But growth can also be impaired if children and teens don’t get the necessary amounts of protein, carbohydrates and other nutrients required to build bone and muscle. Malnutrition, anemia, nutrient deficiencies and osteoporosis may also result.

Fortunately these conditions occur far less frequently than they did even a decade ago due to advances in drugs. “Now we have treatments that are more effective and we can control the disease in the vast majority of children,” says Dr. Lovell. “If you can control the disease, then kids’ appetites improve, their energy is better, their joint pain lessens and they can be more active.”

Conversely, echoing the general rise in obesity among the U.S. population, some kids and teens with arthritis are too heavy. Low activity due to the disease may be partly to blame. Regular steroid treatment causes a dose dependent increase in appetite as well as fluid retention that can also be associated with increased blood pressure. “So if a child has steroids as a chronic part of their treatment then I think those children benefit from early and ongoing involvement with a nutritionist who can find creative ways to limit sodium and calories in the kid’s diet,” says Dr. Lovell. These children and teens must get adequate calcium and vitamin D since steroid use can cause re-absorption of calcium from the bones.

Food Wars

Registered dieticians can also offer ideas about how to deal with behavioral issues that sometimes arise. Having a chronic disease puts many stresses on children and teens that are out of their control. “Food can be one of the few things that children can control when they have active disease. So sometimes food becomes a control issue for families,” says Warady. She suggests parents don’t push food on kids or teens with low appetites because eating should remain a pleasant experience. But also avoid a situation where parents let kids eat whatever they want because they need to gain weight.

Another behavioral problem that more often affects teens rather than children is depression. When depressed, some kids will not eat enough while others will overeat.

Nutritional Treatments?

Both Warady and Dr. Lovell have seen families who seek nutritional treatment approaches to their children’s JIA. Dr. Lovell says studies show about 20 percent to 30 percent of patients try alternative therapies, most commonly nutritional therapy.

“While very few reviews of these therapies have shown any ill benefits from trying these approaches, there’s no nutritional treatment approach that’s been proven effective for arthritis,” says Dr. Lovell. “The only time that I’ve run into real problems is when the parents are so focused on the nutritional approaches that they’re not willing to incorporate more standard type therapy and children end up losing time getting the disease under control.”

Warady stresses the need for families to tell their health care providers about any supplements, herbs or the like that their child or teen is taking. “There may be possible interactions or side effects they are unaware of with some of the things that they could be taking,” says Warady. Also with a product like omega-3 supplements parents want to make sure their child or teen is taking the right dose and not ingesting too much.

All in all, giving children the most nutritionally balanced diet possible combined with medical treatment that keeps their arthritis in check will go the farthest toward producing happy, healthy teens.

Credit: This material was originally prepared for the Arthritis Foundation and has been adapted for the purpose of the JA Transition Toolkit. All material is protected by copyright. More information can be found online at www.kidsgetarthritistoo.org

College Tips for Young Adults with Juvenile Arthritis

(The below article was written by a young adult living with Juvenile Arthritis.)

I was recently asked to share what was helpful to me when going to college with a chronic illness and decided to outline them below for others who may be facing some of the same challenges when starting college.

We are going to visit some colleges that I am thinking of applying to. What should I look for when I go to visit the campus?

Each college is going to be different regarding their approach to disabilities so as you go to the colleges to tour them, stop by the disability resource office and ask them some questions about how they would handle your needs. You will want to get connected with this office even before the school year starts so that any accommodations you have are addressed before classes begin. ie: a notetaker when absent, tape recorder, wheelchair accessible classrooms.

Also, take note of how far apart the dorms are from the classrooms, how large the campus is in general, how easy it would be to navigate if you had a wheelchair, etc. Think about what your particular situation is and what your needs are when you are walking around.

Should I take full time classes when I start my freshmen year in college?

My suggestion would be to start out slowly during your freshman year. You can catch up later if your health allows. Taking just one or two classes the first semester and building up to taking more if you can tolerate it will give you the feeling of success. I have seen many young people try to start out full time which leads to difficulty if their illness is unpredictable. Some of these young people have had to drop all of their classes because they found it too difficult to keep up. Taking a few classes the first semester allows you to test the waters before jumping in. When I started college, this worked really well for me since I could see how much I could handle and then I could add more classes depending on how I felt. This is an individual preference, but it seems to work well for many young adults with illnesses that are unpredictable in nature.

Are there any organizations or services that can help me at college or when I get a job?

Once you turn 18, you will be eligible to receive services from the Office of Vocational Rehabilitation (OVR). They help with career counseling for people looking for jobs who have illnesses or disabilities but they also help with college needs, as well. They provided me with monetary help for college books, transportation to college, and bought me a scooter and lift for the car to help me get around at work. They can help provide accommodations at colleges, such as communication devices, so that students can learn more effectively.

I get tired really easily from walking and the school I am interested in has a big college campus. Do you have any suggestions for making it easier to get around without tiring out?

Fatigue and decreased stamina are issues that I currently struggle with, but weren’t as much of an issue in college as it is now. Now, through OVR, I have a scooter that I can use for long distances. OVR paid for this for me since it is a necessity for me to be able to work successfully. Similarly, if a scooter enables you to be successful in college because it saves you energy then it may be something you would be eligible for. The thought of riding around the college campus in a scooter may not be considered cool in your mind, but if it allows you to succeed and saves you energy for paying attention in class or doing something fun later in the day, then it is worth inquiring about it.

What if I have a scooter or a wheelchair but I am not sure how to navigate the campus with it in the snow?

I haven't used my scooter in the winter yet so can't offer many personal suggestions, although I do know of others who have physical disabilities who are in wheelchairs and have lived in the dorms in the winter. One girl said that she gave the office of students with disabilities a copy of her class schedule and in the winter the maintenance people would clear the paths that she would need to get to her early classes first so that she would be able to get there without too much trouble. She said that it was still hard, but she managed to be able to get around since the paths were usually cleared.

I am on medications that decrease my immune system and make me more susceptible to infections. Should I ask for a private room in the dorms?

Yes. Get your doctor to write a note stating very specifically why it would be dangerous for you to have a roommate. If they have private rooms saved for upper classmen, push for one of those. If your doctor can justify why you need a private room for the safety of your health the school should make every effort to provide you with the necessary accommodations.

I had my own room in college when typically people always had roommates. I get IV nutrition so in college I got 6 boxes of medical supplies every two weeks that needed to be stored. There was no way that I would have been able to fit all of my supplies in half of a room with me and the rest of my stuff, so they gave me a full room. We had to fight for it though. Also, if you are in a wheelchair or a scooter, you can request a handicap accessible room which may be private because you will need more space to store the wheelchair or scooter.

What if my school doesn’t offer note taking or other services in the classroom?

When I missed classes in college, I had a note from the office of students with disabilities saying that I needed a note taker, but rarely used this note since I found that other students were really open to helping out. After a few weeks of being in college, you will get to know some of the other students and become friendly with some of them. These people are usually understanding when it comes to sharing notes due to absences. It also may help to know who the good note takers are in the class. Who gets good grades or who looks like they have neat notes? This is helpful when you aren’t there to take notes for yourself.

I want to have a part-time job during the summer but am not sure what kind of job I would be able to handle because of the stamina and pain issues I have that are associated with my illness.

When thinking about applying for a part time summer job, some questions to think about are:

• Have you done any type of volunteer work before or had a part time job in the past?

• What worked well for you?

• What kind of areas are you interested in majoring in in college?

Finding a job that would compliment your interests for your future, but also wouldn't be too taxing on you, might be a good way to solidify the interests you have. Finding a volunteer position that you’re interested in is a good way to start. This way you could gain experience in an area you like that's within your capability level without the pressure to be an employee with added expectations. Focusing on what you can do instead of what your limits will help you be successful.

What should I tell my employer during an interview or after I get a job?

It is always good to be honest with employers about your limitations from the get go. You don’t have to go into detail about your health problems, but if your illness affects your ability to do the job then your employer needs to know this up front. If you can do the job, but need some accommodations to help you do it well then the employer also needs to know this when you go for the interview or get hired. Under the Americans with Disabilities Act (ADA), as long as you can perform the duties of the job then it is the employer’s responsibility to make reasonable accommodations for you. Some people don’t like telling the employer during the interview about their health problems because they are afraid they won’t get the job if their employer knows about their limitations. Whether you tell the employer then or after he hires you is your choice, but it will make your ability to work in that environment easier if you do this from the start rather than waiting until a health issue arises. Oftentimes, the employer appreciates honesty rather than being surprised later on.

Do you have any final thoughts on how to choose a college?

I would suggest sitting down with the Disability Office staff at any schools you are looking at and talking to them about what kind of accommodations you think you would need. Based on their responses, I would take that into serious consideration when choosing the school. Their responses are going to make your stay there a lot easier if they are more accommodating. When I started out at college, I went to a suburban campus of a large university. It was 30 minutes from home, which was far enough away that I could be independent but close enough that I could call my mom in an emergency. It was a smaller campus so it was pretty easy to get around there and since the school was smaller, they gave their students more individual help and attention. Sometimes starting out with a suburban campus of a larger school is helpful. Then, after the student is an upperclassman, he/she can transfer to the larger campus.