Teens with Lupus Online Support Group

Hello

My name is Amanda and I was diagnosed with lupus almost two years ago. My symptoms began when I was 16(I'm now 21), I had joint pain in both knees and found myself visiting multiple doctors throughout my senior year of high school. I had everything from MRI's to bone scanes, blood work, cortisone shots, and multiple medications. Finally I was sent to a rheumatologist who finally listened to me. For the first time I felt I had someone who believed me. It was a huge change from being told that it was all in my head and I should just lose weight as one doctor told me. I spent a year away from home going to college but soon realized I needed to be home and figure out what was going on with my body. It took time but fortunately in 2009 I was finally diagnosed with SLE. Though it wasn't a diagnosis I wanted to hear I felt relieved at finally knowing what was causing my symptoms. I was put on Plaquenil and within a few months I noticed a difference. Unfortunately I was still in pain and getting frustrated. My rheumy recommended I try taking turmeric, a natural supplement. I was extremely thankful she was willing to try alternatives rather than giving me another medication which would just make me feel sick. I have tried multiple pain meds which only seem to make me feel worse. Taking the plaquenil and turmeric has got me through the last few years. I have changed my diet after reading a few articles, I am now vegan. I was able to go back to school, this time closer to home, and in the fall of 2010 I started a RN nursing program at the local community college. Being a nursing student can be extremely stressful and busy at times and in October of 2010 I found myself once again in pain. My rheumy increased my dosage with hopes that this would help. At this point I am still going to school and I love it. I can't let anything stop me from becoming an RN. At my last visit with the rheumy she decided, based on how I have been feeling, the plaquenil just isn't enough right now. I went on a two week dose of prednisone with hopes that it would help with my flare. Fortunately it did and I have now added methotrexate to my list of treatments. I have my good days and bad days. Family can only understand what I am going throught to a certain extent. Though I am no longer a teen my journey started as a teenager and per the suggestion of someone from the regular Lupus support group I decided that perhaps I can relate to some of the teens and I can also definitely understand what someone is going through at a young age. Please feel free to send me a message any time. I'm always available to listen if you just need someone to talk to or would be more than willing to offer any adivce I can.

Hey Manda3

Its nice to hear from someone on here. It sucks having to go through high school like this because you never know what to expect everyday. here is my story. A couple of months ago i have been diagones with systematic Lupus. It really suck to be that young and have it. My mom gotten it two years after i was born. Its so hard for me to lok up to her about it because of the fact that she doesnt take care of hers at all. Ever since she got it she never takes her medicine and is always in and out of the hospital. I am so fed up with it its like she doesnt even care enough about me to just take her medicne for my sake. She almost die 4 times alreay its like she dont flippin get it. Ive been living with my grandma ever since i was born and i think that since she knows that when she is gone that i will be taken care of. Even if that is true she doesnt know how hard that this will effect me and her mom. She is the only person that i got right know. My dad and his family isnt talking to but thats another story. My grandma has had lupus for a year now and she takes care of her i just dont understand why my mom doesnt. There isnt any prperson like your mom and no one can treat you like her. I pray every night hoping that she can live atleast until i can graduate.

I completely understand what you're going through. High school can be hard enough and then adding lupus on top of it all can definitely be rough. All I can say about that is do your best to get through it all, and at least in my case college has been a much better experience. As for your mom I wish there was an easy way to make her see that there are medical options out there to help her. Though it may not be easy the best thing for you is to take care of your self. Do what you can to help your mom but don't let that get in the way of doing everythig you want to do in life. If she is unwilling to take the help you offer love her for the person she is even if it is not the way you had hoped.

HI manda3

You are so right about i need to just do my best. Im happy to hear that college will best so much better i cant wait!! I have tried so much stuff with my mom but there anit nothing clicking inside her head she just wants to be all stubborn and all and i just cant deal with that anymore. Im going to love her either way but i ahev to take care of myself now and not worry about her that nuch because she doesnt want to get help. Its like im there if she need me but not when she acting all stubborn you know what i mean. She is putting alot of stress on me and makin me hav flares and i cant have that anymore.