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Thread: Lupus = busy college life's worst enemy

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    Unhappy Lupus = busy college life's worst enemy

    So I'm probably a little old for this forum, but I'm posting anyway!

    I'm currently a sophomore in college. I was diagnosed with Lupus the first day of my freshman year at a university a few hours from home. Safe to say my freshman year was traumatic and pretty horrible!

    However, sophomore year turned everything around and I am currently extremely involved, active, excelling in classes, interning and loving life! However, my lifestyle allows for about 5 hours of sleep a night and limited dedication to taking care of myself. I know it's horrible, but I have such a hard time limiting myself due to my disease. It's not fair that everyone else gets to have a phenomenal college experience and I may not.

    My health is suffering though. I'm constantly ill (usually with a sinus infection and joint and stomach issues and of course the zombie-esque fatigue) but I can't figure out how to balance being a successful and happy college student and being someone afflicted with Lupus. Very few of my friends and professors know about my Lupus (I like it that way,) so when things are tough and stressful, I somehow find a way to pull through and most times pay the price with my health.

    I was just wondering if anyone is in a similar situation and had any advice concerning balance. I've always been a go getter who loves to be busy, but it's getting tougher and tougher and I worry that at some point I'll not be able to do the things I love and be fulfilled.

    Any help or support would be greatly appreciated!

    <3 kirsten.

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    Hi Kristen!
    I understand how you feel about not being able to participate in college activities etc. I was just diagnosed at 34 and I agree it's not fair not being able to do what you want when you want and how you want due to Lupus. From what I have read and spoke to other Lupus patients about is that Lupus is a disease you can live with for a very long time. In fact, both my great grand mothers (maternal and paternal) had Lupus and died in their late 80's early 90's not from Lupus but other issues and that was over 15 years ago. I think you really have to focus on your health if you expect and want to live a healty life with Lupus. Sleep, taking your meds as instructed, eating healthy and trying to keep the stress down are key to your health success. School will be there, true and real friends will be there,family will be there but you have to be there as well and not deny what you have. I recently enrolled in school to complete my degree over a year ago. Things were going great and I was getting good grades (prior to me being diagnosed) Nov. 2008 I was diagnosed and in the middle of the fall semester. I had no access to a computer to email/drop my computer and math class. I have an F on my records due to this. I have no doubt I will retake both classes and get an A but at the advisement of my doctor and family I sat out Spring semester to focus on my health and try to get my Lupus to go into remission. I am on my way but I do miss school.
    I say all this to tell you...you have time and can certainly do all the things you want to do but please take care of you and your health first and foremost!!!

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    hi kristen!
    i cannot fully relate to you, becaue i am in highschool, and not college, but i don't let lupus stop me from participating in anything at school. for example, i still do cheerleading, which trust me--can be really hard when you have lupus! i dont have the energy that i used to have, and if im having a bad day, im too sore to do anything...but i try to pull thru it and do the best i can, without pushing myself too far.
    my doctor actually informed my entire school staff about my whole situation, so that i dont get penalized for missing days of school or being late or having to leave early. i dont mind teachers knowing, because then they can kind of get an idea of why i can't do something. but i only like my friends knowing about me having lupus, everyone else doesn't need to know.
    lol. soo just don't let stupid lupus keep you away from enjoying everything you can at college!!
    you deserve to have a good time!
    feel free to message me anytime!
    I'm Not Crazy, I'm Just A Little Lupie!

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    Hi
    My Daughter is in Medical School and has Lupus. It is very hard to be a student, live away from home and take care of yourself.
    All you can do is try your best to take care of yourself, get a good Doctor and hope the degree of the illness will not slow you down too much.
    Just keep fighting!!!

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    Kirsten,

    I am also a college student. I am a senior Psychology major. I am in my last quarter, and actually my last six weeks of school. I am very excited, but getting to this point has definitely come at a high price: my health. I was diagnosed before I started college, when I was 18. It has now taken me 5 years to get to graduation because I push myself too hard many times and my health takes a big hit because of it. I work on campus, I do volunteer research and I was in band and taking classes. I have cut out band this quarter just because I couldn't take it any more. I also am in a horrible flare right now, and my grades are suffering. Luckily, I only need C's in these last classes to graduate. I am normally an A student, but I am more focused on my health right now than getting those A's that don't really matter at this point. It's very difficult to be sick and be a student, but it can be done. Hang in there! Just remember to take time for your health too!

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    I just turned 17 and missed 5 weeks of the beggining of year 11 which was a huge deal for me. I have only recenlty gone back to school and am having a really difficult time catching up. As it happens i missed a huge amount of school in those weeks and all my assesments have built up. All in all though i am greatful it did not happen during year 12 and the HSC then i would have been in heaps of trouble and probably have to reapeat year 12

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    Thanks for all the advice! This week has been really rough. I had the return of my stomach issues (with a vengeance) on Thursday and ended up in the ER all day with 2 of my only friends who know about my Lupus. After 7 hours of waiting, the doctors couldn't find anything wrong and refused to do a catscan because I didn't have a fever.

    So of course, I felt like an idiot.

    Yesterday I felt fine and then I woke up this morning at 4 feeling like my stomach was going to explode. When I got up at 6:30, I started vomiting and continued until about 8:00 tonight. Because of this, I had to miss one of my fraternity's biggest events and the celebration after it, as well as a concert I wanted to go to. SO FRUSTRATING. I feel like it all could have been avoided if doctors actually listened to me sometimes.

    I'm contemplating telling more people about my Lupus. I hate the stigma that comes with it, but heaven forbid some horrible complication occurred when I was with friends who didn't know. They wouldn't know what to do.

    Any thoughts?

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    I think that it is important for the people in your life to know that you have lupus, mainly for the simple fact that lupus has a mind of its own!! Unfortunately, we have to consider that things can happen to us at anytime in any location. I suffer from seizures and I have to keep the people I surround myself with informed because it is something that can come on at anytime. Other than that however, I think that it will also help the people in your life to understand you better.
    A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!

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    I tell everybody about my lupus. Because I feel like there needs to be more awareness in order to find a cure. It's been 50 years since they come up with a new treatments. I will pray for your wellness and that you will have more energy.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

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    Hi Kirsten,
    I totally know how you feel. I am also a 19-year-old college sophomore and I live on campus. I want so badly to do everything, but when I don't get enough sleep bad things happen. I have found that napping during the day is really helpful though, so when I schedule for classes I also schedule a nap time. Sounds ridiculous, right? But since I don't ever get enough sleep either, I found it to be really helpful.

    As for clubs and stuff, I try to limit it to just a few, but I always let one person in the group know about my lupus so they'll stick up for me when I can't be there. I hope that helps.
    -Miranda

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