Here are some tips from Anna, Morgan, and Samantha to help JM teens navigate both medical and social issues:
Keep a daily pill box somewhere you will remember to see it, maybe near where you eat breakfast so you can take your medication with food. Organizing your pills helps you remember what you need to take and when, and you can control what you’re putting into your body.
- Keep travel-size medication organizers in your backpack or purse in case of sleepovers.
Know Your Medications
Know what medication you’re taking sooner rather than later. When you go to the doctor and they ask for an updated list of your medications, do your best to let them know what meds and dosages you’re taking. This will help prepare you for when you are older and not going to doctor appointments with your parents or living alone.
- Be aware of when you are running low on medications so that you can remind your parents or contact your pharmacy for a refill.
The perk of giving yourself injections is quickly learning the least painful spot on your body. You also know when it’s coming, which makes you feel like you have more control over this unenjoyable activity.
Use a smaller needle and squeeze the area where you will get the shot. You’ll almost feel nothing, and doing it yourself puts you in control and makes you more independent.
- Beware of peer pressure; remember to follow your own rules, not those of anyone else.
When you go to a party, you will eventually come into contact with kids drinking ALCOHOL or doing street drugs. Many medications used to fight JM do not interact well with alcohol and drugs. Doctors advise that you can not drink alcohol while on these medications. They are not just saying this because you are underage; this should also factor into your decisions. Alcohol can majorly affect your system if it is already affected by medication and should be taken seriously.
If you are at a party or with friends, and they try to get you to drink, you can say “no.” If friends continue to pressure you and you feel comfortable with them, you can go into further detail and explain why. If you don’t feel comfortable but want to get your point across, you can say you are the designated driver for the night OR explain you are on medication that does not work with alcohol. Most of the time, teens will understand and leave you alone. If you feel out of place, get a beer can, dump the beer out or a cup, and fill it with water. Nobody will ever know.
Not all friends will understand what you are going through, which might leave you feeling lonely and isolated. This is a good time to turn to a friend who also has JM via the internet.
You might find it hard to relate to what “normal” teens are concerned with as you have been forced to deal with serious medical issues.
If you have a very good friend, who you think might understand, try explaining your illness to them. Or give them a simple explanation as to how JM affects the body.
While many of your peers spend less time with their parents, you might still spend a lot of time with your family, which is alright because you need your family’s support. Try not to compare your situation to anyone else.
Connect through blogs or Facebook at www.facebook.com/groups/497818273566055/. This is not a Cure JM sponsored site.
- Be kind to yourself and appreciate what your body does do well.
- Many teens have some body image issues, so recognize you are not alone.
The medications used to treat JM, especially Prednisone, can have visible effects on the body, and the two most obvious are weight gain and acne.
Sometimes Prednisone can create swelling in the face. Don’t worry; this goes away as you lower your Prednisone dosage. Hair growth in places you don’t want it, and hair loss are other possible side effects of this medication.
Since most of us started these medications before, during, or right after puberty, these can seriously affect how we see our bodies. If necessary, there are things you can do to take care of acne. Talk to your doctor to determine a good option for you.
- Stress can make your illness worse or even cause a flare.
- Teens with JM, or other chronic illnesses, need to learn how to care for themselves physically and emotionally.
- Find out what works for you: meditation, mindfulness, yoga, swimming, fishing, painting, drawing, ceramics, playing music, singing, riding horses, watching movies, reading, hiking, or relaxation techniques.
Dealing with Teachers
Talk to teachers. Stay in touch with them, especially if you miss class ahead of time. Not only will they take you more seriously, but they will be more considerate in the future when you have to miss more school or are not feeling well.
If need be, work with your school to create a schedule that allows you to get the rest you need while staying on top of schoolwork.
Find a friend or another student in each class who you trust to take notes and let you know of any necessary information given in class.
Does it help? I have found going gluten-free to be very helpful. Please consult your doctor before starting a gluten-free or special diet.
Is it worth it? Some patients report that it helps with pain and fatigue.
How difficult is it to maintain? The problem with a gluten-free diet is you have to do it for at least three weeks before it makes a difference. This trial period can be difficult because you won’t feel like it’s working, making you miss pizza even more! The good thing is so many stores, and restaurants now sell gluten-free alternatives. Some of these alternatives taste just as good, if not better. You have to find the ones you enjoy the most!