new to forum and frustrated
Hi i am 16 years old from ontario and i was diagnosed one year ago but this is the first time i have come across a forum like this. Reading over, I realize that many of have been dealing with Lupus for a very long time so I just wnated to know how you deal with day to day because there are so many things that come along with it... i started out oj 60 mg on Prednoise and am now down to ten and plaquenil and imuran and it never seems to end. I know I have to manage it but there is nobody that has lupus in my family or that I have been able to talk to and I would greatly appreciate it if someone could reply :!:
Thanks a bunch=)
Welcome Ruby Red!
I'm not as young as you: 25. I can only imagine how hard it would be to deal with this disease during your teenage years (I was just diagnosed this year).
Living with this disease IS very tough. Sometimes you just have to take it one day at a time. I've learned to adjust my expectations of myself to be more realistic. Sometimes you have to admit that you just can't do things or that you need help. This has been very hard for me as I'm a very responsible, independent person. But I have found that most people are more than happy to help out. You just need to have the courage to ask.
As time goes by, you will learn your limitations and how your body responds to certain things. You will learn what things to avoid and what things help make you feel better. This website has been a Godsend for me. I have learned so many things here that you can't learn from a book. Afterall, this is information straight from the people in the trenches!
I'm glad you found us. Take care!
day by day
It's easy to get frustrated because every day seems a different symptom. If it's not due to the Lupus it's due to the meds. It's a pain but patience is the key. Do things that make you feel happy when you feel ok and the other poster is right - sometimes you just need to ask people to help out... open stuff for you, make food... sometimes if you feel like going out you have to stay home... it's definitely not fun.
I'm older than you but as I look back I think I probably had this a long time ago and just didn't know it...
ALso read as much as you can about it and know you have support. http://lupus.org is the main site for Lupus , it has so much info and talks about symptoms and everything seems so exact.
You're not alone. And you will have bad days and good days...
Lupus Ontario (the provincial chapter of Lupus Canada) has a number of different chapters and meetings - they might be able to put you in touch with a teen support group in your area. Here is a link with more information.
I know being a teen-ager with lupus is especially hard because you have the pressure and non-stop routine of school, and you want to be out doing things with your friends instead of stuck home taking pills. Have you and your parents talked to your teachers at school to explain your situation? Since you don't know how you're going to feel from day to day, it's important your teachers know a little about this disease, so they can allow spme leeway about attendance and exams.
One of our members was diagnosed at age 11 and I think there are others here who also went thru the teenage year with lupus. So I hope they will have some great tips and information for you. Welcome!
I just had a thought. I was treated for arthritis as a teenager and had trouble with doing things because of sore joints. I had a really hard time carrying my school books around in high school, especially once I started to take AP classes and such because the books were so thick. I had my doctor write a letter and was able to get a locker in a central location in the school. That helped me go to my locker more often. Also, I had two sets of books: one for school and one for home. That way I didn't have to carry the heavy books between school and home. There again, I was able to do this with a note from my doctor. Some of my teachers even let me keep the books in the classroom so I wouldn't have to carry it to and from my locker. This is something you may want to do if your heavy backpack gives you trouble.
Hope this helps!
Woww..thanks for all ur comments everyone. I really appreciate it and am thankful there are still kind helpful people like you all=)
I was reading over your post. I remember being 16. Today I am 26 and survinving Lupus head on...you really learn more about yourself with a chronic illness.
There are no groups in Ontario, well, not in Ottawa. Not sure where you live.
I was diagnosed right away at age 11, walked into the ER with the Butterfly rash, swollen joints, a blood cloat in my lung, kidney failure and extreme high blood pressure. Was at CHEO for 5 months. Actually my parents thought I was anorexic so never got me checked out. I could not keep anything down.
I never joined a group like this until now, so, good for you, people here give great advise and share their experiences, it's wonderful.