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Thread: another newbie

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    I'm 18, less than a week away from moving up to college to live with my two best friends, and completely unsure about how I'm going to live with Lupus.
    I have been healthy my entire life, getting this far without so much as a broken bone or cavity.
    Maybe its because I'm 18 and think I'm at the top of the world or whatever it is, but when the doctor told me I had Lupus (actually, when he told me what Lupus was), it completely broke me.
    And I've always been really tough. I'm starting out college as a junior. I spent three weeks in Mexico hiking through the ruins in 95 degree weather(as I found out later..the sun really didn't help much). I've always been determined to keep up with the world and my dreams.
    But honestly, what I've done for the past month is pathetic. I lay in bed and think of my body attacking and destroying itself...forever. I know thats overly dramatic. But I've always been so grateful for my health and I feel like its been stolen.
    Something always hurts, and too often, everything hurts. On top of that I'm tired all the time, and get extremely worn out. All of this happened in summer, but in a few weeks I'm moving away and starting school.
    I hate taking steroids twice a day. And the plaquinel (sp?) I had a horrible reaction to and can't take anymore.
    I know I can't sit here and cry and feel sorry for myself. Its never been who I am. But to tell me I can't go into the sun anymore? I live in South Florida! Is it really that bad with the sunlight? Does it get any better?
    And if anyone has any advice for a newbie about to set off on this by herself, it might save me from learning a few lessons the hard way.
    I hope this doesn't sound like a rant. I'm tired (of course) and this whole thing has been completely overwhelming.

  2. #2
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    You sound a bit like me when I was your age (I'm 38 now). I was about your age when I started getting sick too, although I was in my late 20s before it really started affecting my life on a daily basis. Unfortunately, the sun is now your enemy. I cover in heavy denim from head to toe with hat, gloves and veil every day of the year. Not doing so causes severe burns on my skin which leads to flare ups of my joints, severe fatigue, nausea, etc. If I lived in South Florida, I'd seriously consider relocating, Oregan is really lovely Hang in there life really does go on.

    Maggie17

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    Hi Jen...

    Rant, rant, rant...just chat, vent, cry, laugh we do it all here and no need to feel guilty, or apologize needed. We know what you are feeling.

    It must be hard starting life, thinking it is doomed before it has begun. We all are different, symptoms vary, the degree and etc. Some milder, some worse, not much consoling..egads worse???#@!*#! You could be a mild...

    ...but you have to take each day as it comes and worry not about tomorrow, for sure, you will then miss out on today. Energy and thoughts wasted.

    Find ways to ease your symptoms or prevent them from occurring. New medicines. Work closely with your doctors. Follow there regime. Seek a second treatment opinion if necessary.

    Find ways to reduce stress, especially when exam time approaches and this new journey you are taking. Yoga? Meditate? Pilates? Spiritual?

    Keep strong. Keep core muscles strong.

    Eat healthy. Probably hard to do on campus...but do try.

    Know, if you exert yourself one day, you just may have to pay the piper the next day with extreme fatigue and pain. Pace yourself, find your triggers...

    Laying in bed, being pathetic...I think we all have been there. I have. Mourning the loss of the girl, me I once knew..modifying my life over and over. I think of these crunching machine like aliens attacking my body from the inside like a scifi flick... So, you are alright, normal. I'd like to think I am...normal.

    No, sitting crying about it won't make it go away...but your entitled to have days like that. Somehow days like that make me stronger to take Lupus on the next day.

    Sun?...Lather in sunscreen. Time how long you can stay in the sun without aggravating your symptoms. Buy some cool celebrity huge dark sunglasses. You don't have to dress up like a nun to go outside. Me, I keep my exposure time to minimum. I'm afraid of a flare. Last one was a doosie.

    I am 46, what plagued my mind, somewhat like yours but the reverse in a way. You're saddened because you life is just basically beginning and I thought...gosh is this how I am going to spend the last half of my life. Thinking I am closer to dirt than to a dance floor, to being well. I got back on, gave a last call on my pity party and I am at living life again. And marvelous at it again, I must say. I keep trying. I am sure there is another pity party in my future...but, hey that is okay...

    I've learned to change up, adapt, modify..and you will to. It isn't all the gloom and doom. Enjoy, keep healthy, strong and you will do alright.

    By the way, welcome to wehavelupus.com..lots of great people, great posts...wonderful ideas....read, read, post more too.

    Be well, Jen,
    Oluwa

  4. #4
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    Hi Jen
    Welcome to our family. You have already been given some excellent advice and I do hope that you try to heed some of it. As Oluwa pointed out, this is not the end, it is just a different beginning. Yes, you will have to make some lifestyle changes in order to maintain a relatively normal life. But, it can be done, and many of us are living testaments to the fact that there are many who live years and years and years with Lupus. Yes, we all have our days when the Lupus flares, when we have to forgo some activity because of the fatigue, when we have to limit our outdoors activities because of the sun, when we get depressed,angry and sad.....but, for the most part, we are still able to live full and normal lives. You will too!
    As Maggie and Oluwa said, your life will go on. Follow your doctor's directives, take you medications, make the appropriate lifestyle changes, reduce your stress....doing all of these things will help you to manage your illness and may even allow you to, once more, hike in the Mexican ruins. This time, with a big floppy hat, good sunglasses, lots of water, lightweight clothing that covers your body, slathered in sunscreen, and taking rests when you need it! Everything that you want to do, you can probably still do it, only slower and with much more precautions....but it can be done!
    I wish you the very best!
    Peace and Blessings
    Saysusie

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