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  1. #1
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    Default I'm new

    Hello,

    I'm a teenager who was diagnosed with lupus last year. My condition was relatively stable until the last month when my mom decided to stop my steroids because she believed they weren't helping me and not tell the doctor. It was a huge mistake, the lupus started attacking my body and I had the worst flare ever and had to be admitted to hospital. Now I'm taking my medications and it's a lot more compared to last time.

    Anyone feel free to share the medication you're taking and when you were diagnosed with lupus.

    I hope to make new friends here. Stay strong everyone!

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    Hi there! First let me welcome you to WHL! You have just joined a wonderful group of people that have been touched by this nasty disease just like you have. I am sorry for what you had to go through but hopefully you (and your mom) have learned not to stop medicines without a doctors order. Lupus is a deadly disease if left untreated. Thankfully we have medicines that allow most of us to live long, successful lives but the key is taking the medicines that will help us. As you have found out, not taking them can be a nightmare.

    We are really glad to have you as part of our WHL family and I look forward to getting to know you better!

    FYI- There are several teens in our group and I am sure they will greet you shortly!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Miss Fearless,
    I love your tag name. You sound like you have a very positive attitude about your self and your ability to deal with lupus. Welcome!

    Does your mom understand now how important your meds are? As the mother of a teen with multiple medical issues, I know that it can be really hard to see your child sick and sometimes denial seems like a reasonable coping mechanism. If your mom wants you to go off your meds again, please get your doctor involved right away. My guess is that she is feeling pretty guilty right now, and sometimes that comes out as frustration. Hopefully your family will learn to work as a team to keep you out of the hospital and give you as normal a life as possible.

    I am 47 and was diagnosed with lupus 12 years ago, but had symptoms starting after my first child was born when I was 25. I take plaquinil, quinacrine, Imuran and am enrolled in a study of a new IV drug for lupus. I take prednisone for flares, but I was able to stop taking it on a daily basis after I started Imuran. My daughter takes prednisone, fludricortisone, plaquinil and methotrexate for undifferentiated connective tissue disorder. She just graduated from high school, and it was a rough road. If you need any ideas about dealing with teachers, 504 plans or scheduling, we've got a lot of experience.

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    Hi misfearless, so glad you found us! Such good people you will meet here! The info and validation is so helpful here. Okay I am on prednisone, Plaquinil, lodine, skelaxin,cymbalta,levoxil, 50,000 iu vitamin D, and several supplements. Each one was slowly added as each symptom presented itself. I was an all natural kind of gal, before lupus, however I had to accept this new way of life in order to have some quality of life. Each med has its issues but without them I am no good to anyone. Hope this helps (big HUG for you!).

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    welcome! This place changed my life, i am so glad to see you here, maybe your mum could join up aswell, it may help her understand that medication wont eliminate 100% of lupus symptoms but meds are impprtant to our survival. Untreated this is a more serious condition than most realise. I went off my meds because all the information about lupus online seemed to imply that once treated, people with lupus will have completely normal lives. Thats both true and false... It will never be normal, we will always have to be careful and we will always need meds... At the very least. And some of us have to make big changes to our lives to cope. But here you have found a soft place to land and a great place to learn.
    Stick around : )

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    Hi, yes I try to be fearless and overcome any obstacles I get.

    My mother knows my meds are important but she still seems to think they don't wrk. She even talked about cutting my dose today when I was just out of hospital yesterday! Luckily I insisted I take the dose given by the doctor. She believes in using the natural way by giving me a healthy diet but I know how important my medication are. Hopefully my mom will come to accept that I have to take it for life. She looked really sad when she saw all the medicine I had to take.

    Quote Originally Posted by Gizmo View Post
    Miss Fearless,
    I love your tag name. You sound like you have a very positive attitude about your self and your ability to deal with lupus. Welcome!

    Does your mom understand now how important your meds are? As the mother of a teen with multiple medical issues, I know that it can be really hard to see your child sick and sometimes denial seems like a reasonable coping mechanism. If your mom wants you to go off your meds again, please get your doctor involved right away. My guess is that she is feeling pretty guilty right now, and sometimes that comes out as frustration. Hopefully your family will learn to work as a team to keep you out of the hospital and give you as normal a life as possible.

    I am 47 and was diagnosed with lupus 12 years ago, but had symptoms starting after my first child was born when I was 25. I take plaquinil, quinacrine, Imuran and am enrolled in a study of a new IV drug for lupus. I take prednisone for flares, but I was able to stop taking it on a daily basis after I started Imuran. My daughter takes prednisone, fludricortisone, plaquinil and methotrexate for undifferentiated connective tissue disorder. She just graduated from high school, and it was a rough road. If you need any ideas about dealing with teachers, 504 plans or scheduling, we've got a lot of experience.

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    Hi Missfearless,

    Welcome to our lovely family at WHL and it's lovely to have you with us plus you'll learn so much from the threads, symptoms connected to the disease.
    Sorry to hear what happened with your mom then hospital but at least your on a stable road again.

    Lupus is a disease where it needs medication to help to surpress it's symptoms but i do love your attitude to life and this goes a long way with coping with Lupus, at a young age.

    ((Hugs Terri)) xxx
    Last edited by Peridot20_Gem; 06-14-2011 at 11:18 AM.

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    Is it safe to assume that your mom has been feeding you healthy food all along? Based on that you could make the argument that your diet alone wasn't enough to keep this from happening. There are foods that are supposed to help with inflammation and pain (sour cherries come to mind), but they don't take the place of meds. There was a good list in the AARP magazine a few months ago. I'll see if I still have it. The very first thing us moms do for our kids when they are born is feed them. It's a strong instinct to nourish and comfort our kids. Maybe you and your mom can agree that she will be in charge of helping you eat in the best way for your disease, and she will agree to voice her concerns directly to the doctor and follow his/her instructions carefully, including taking meds as directed. It sounds like your doctor(s) are taking this very seriously, so make sure that your mom is with you at your appointments, so that she can hear what the doctor says and ask questions. You might be able to ask pointed questions, like "Can I control this by eating a healthy diet?" "Is it safe to take herbal medicines?" "What do you think would happen if I don't take my medications?" or even "My Mom isn't comfortable with the treatment plan. It would be great if the two of you could talk about why you are giving me these drugs." Maybe you need a second opinion to convince your mom that the doctor is right - just make sure you get a good rheumatologist and not a homeopath or chiropractor. Unfortunately your mom does have the power to take away your meds until you are 18, so it's great that you are standing up for yourself and that she is listening.

    Motherhood equips you with all sorts of instincts to protect your children. She is realizing that she can't protect you from all the bad things in life, and it sounds like the meds have become a symbol of your disease in her mind. Her instinct, at a level below rational thought, is to protect you from what she sees as a threat. Our meds do have potentially serious side effects, so not only are the meds a constant reminder that you are sick but they also have the potential to make you sick in a different way. She is going through the classic stages of grief, and unfortunately denial is the first one and acceptance is the last. Hopefully she will find the emotional support that she needs (from someone other than you) to get through this so that she can be your ally.

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    hi missfearless.
    i am a father, who has mildly sick children.
    it is not easy to admit that what you are doing to protect your children does not work.
    to admit this means that you have to admit you have failed. this is not easy.

    mum may not be ready to say this.
    fear of failure is one of the strongest fears to overcome.

    she obviously loves you, and is trying to protect you.

    i know my medication has helped me to stabalise, not be cured, but stabalise.
    there is no easy answer, but listen to what the others on this page have said.
    you and mom must come to an agreement. use the doctor to help you.

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    Hi and welcome =) I dont know if I still fall into the teen catagory lol but Im 18 and was diagnosed when I was 16. I really hope your mom starts to realize how important your meds are. She needs to know that being on them is doing a lot more for you than being off them. They are unfortunately our only option to be healthy (mostly healthy).

    Im on Medrol, Cellcept, Plaquenil, Norvasc, Prilosec, Baby Asprin, Mobic, and currently an antibiotic for yet another infection. I hate pills, but I take them.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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