Here are some tips from Anna, Morgan and Samantha to help you 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 meds with food. Organizing your own pills helps you remember what you need to take and when, and you can take control of 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 you’re taking sooner rather than later. When you go to the doctor, and they ask for an updated list of your meds, or if they don’t have one in the first place, 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 every doctor with your parents or your living on your own.
- Become aware of when you are running low on medications, so you can remind your parents or contact your pharmacy for a refill.
The perks of doing your own shot are you quickly learn the least painful spot on your body. You also know when it’s coming, which makes you feel more control over such an 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 who are drinking ALCOHOL or doing street drugs. Many medications used to fight JM do not interact well with alcohol and drugs. Doctors will tell you that you can not drink alcohol on these meds. They are not just saying this because you are underage, though this should also factor into 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 simply say you don’t want to. If they 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 just state you are on medication that does not work with alcohol and most of the time; they will understand and leave you alone. If you really feel out of place, get a beer can and 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 one of your pals 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 some simple definition of what JM is all about.
While many of your peers spend less time with their parents, you might still spend a lot of time with your family. That is okay. You need your family in a different way than your peers. You will separate when the time is right. Don’t judge yourself.
Connect thru blogs, Facebook etc. www.facebook.com/groups/497818273566055/ (not a Cure JM sponsored site)
- Be nice to yourself, appreciate what your body does do well
- Many teens have some body image issues – you are not alone
The meds 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.
Hair growth in places you don’t want it, AND hair loss are other possible side effects of some of the meds.
Since most of us started these meds 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 the acne. Talk to your doctor to see what might be 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, relaxation techniques.
Dealing with teachers
Talk to them. Stay in touch, especially if you’re missing class ahead of time. They will take you more seriously and 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 also staying on top of school work.
Find a friend or another student in each class that you trust to take notes and let you know of any necessary info that was given out 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? The problem with being gluten-free is you have to do it for at least three weeks before it starts to make a difference. This can be difficult because you won’t feel like it’s working, making you miss pizza. The good thing is, so many stores now sell gluten-free alternatives and many restaurants do as well. Some of these alternatives actually taste just as good, if not better. You just have to find the ones you like most!