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Thread: New here, and i really need support.

  1. #11
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    :roll: other animals? Yeah, like pit bull.... and currently "fierce wolf" ?! :shock:

    Lillbit, there's a website that has a story on it that you should read. The story is "The Spoon Theory." The website: www.butyoudontlooksick.com It is about a young woman in college who is living with lupus. You might find it... relevant.

    I work at a college, I'm lucky, my lupus is mild and pretty much confined to manageable pain and fatigue. But I see students who have challenges on a regular basis. Talk to the ADA counselor/coordinator at your school. You may need to go to a modified schedule for a bit, so that you can pace yourself and not stress yourself into a flare. The ADA counselor might even be able to help reschedule finals - so that you don't have 2 on one day.

    Many hugs, Liz, and welcome to our forum.

  2. #12
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    hey girl,
    just wanted to say hi! =)

    I am only 24yrs old and have been sick for the last 6mths ! so i know the struggle of feeling better and missing friends and going out and all that fun stuff that just seems to be passing by, I know I couldn't tell you where sept. Oct or Nov went, ( it was a blurry of prednizone and weird scary rashes!!!! ) and yet docs still don't know what is wrong with me... i may not have lupus but all the same fun symptoms!

    Ya know.... GOD only gives us as much as we can handle... I know this sounds cleche' but we have our whole life ahead to be the best we can be... and that means taking one day at a time and enjoy each to the fullest!

    take care and let me know how things are going for ya muah!!

    :roll:

  3. #13
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    I am 28 and diagnosed around the same time as you (Aug last year). Things were fluctuating a lot around Nov-Dec, like you were saying, good one day, horrible the next. Things just didn't seem like they were going anywhere.

    Then suddenly--2 weeks ago--everything disappeared. The rash--the lowered C3 and C4 complements--all went back into the normal range.

    So hang in there--lupus is a funny thing--it came on really suddenly and can disappear just as quickly. Stay on the meds and keep in touch with your doc~!

  4. #14
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    Default Thank you!!! Now i have a question!

    Wow, such lovely support! So, the last couple days, i've been experiencing some weird things with what i think is my heart. I've woken up w/ racing heartbeat, or when i'm just sitting down it will feel like my heart beats REALLY HARD and kind of slow for what feels like about 3 times. I did a little research and it sounds like I should tell my doc as heart/lung conditions are common. The other thing is, i was looking at a rundown of pleurisy (sp?) and it is definitely something i have, and i can remember having as far back as 8th grade (i remember because it was the first time it happened in a car with my best friend and her mom). I would say i get the sharp pains about every 3-4 days but they don't really last, and i always thought it was semi-normal (which is funny, because a lot of the weird symtoms of lupus i just generalized as stuff that "just happens", its interesting learning that no, it doesn't happen to everyone, and yes there's a reason for it, haha) anywho, i was just wondering if anyone else experiencing it could give me advice or words of wisdom, since i am a "newbie" not only to this website, but to this whole disease. Thanks!

  5. #15
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    You are correct, the heart and lungs are frequently affected in people with Lupus. Sometimes, the problmes with these organs can cause a variety of problems, ranging from mild to serious or even life-threatening.
    These complications are known as cardiopulmonary (cardio = heart; pulmonary = lung). The primary cause of these problems is the inflammation that Lupus causes.
    Some cardio-pulmonary problems that can occur in Lupus are:
    * Pericarditis: inflammation of the lining of the heart
    * Myocarditis: inflammation of the tissue of the heart
    * Coronary vasculitis: inflammation of blood vessels in the heart
    * Pleuritis: inflammation of the sac around the lung
    * Pulmonary Hypertension: blockage in the arteries of the lungs
    * Pneumonitis: inflammation of the lung
    * Pulmonary emboli: blood clots in the lung

    Lupus can involve all parts of the heart: The Pericardium (the sac surrounding the heart); the Myocardium (the muscle layer of the heart); The Endocardium (the lining of the inside of the heart); and the Coronary arteries that take blood to the heart.
    Pericarditis, or inflammation of the sac around the heart, is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium. The symptoms are: Sharp chest pain that can change with changes in your body's position and frequently may be relieved by leaning forward slightly; this chest pain may feel like a heart attack: Shortness of breath.
    Pericarditis is usually treated with anti-inflammatory drugs. If anti-inflammatory drug therapy is unsuccessful, doctors may prescribe a brief course of corticosteroid treatment (such as Prednisone).
    Sometimes Pericarditis can be due to an infection or to kidney failure. If this is the case, then the treatment is different than if it is due to just your lupus.

    Pulmonary Hypertension begins when tiny arteries in your lungs become narrow or blocked. This causes increased resistance to the flow of blood in the lungs, which in turn raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing the heart muscle to weaken and sometimes to fail completely.
    The signs and symptoms of pulmonary hypertension are subtle in the early stages of the disease and may not be apparent for months or even years. As the disease progresses, signs and symptoms become more noticeable. They include:
    * Shortness of breath (dyspnea). Initially, you may notice that you're short of breath only when you exert yourself physically, but eventually you may be short of breath most of the time, even when you're at rest.
    * Fatigue.
    * Dizziness or fainting spells (syncope).
    * Chest pressure or pain.
    * Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites).
    * Bluish color to your lips and skin (cyanosis).
    * Racing pulse or heart palpitations.
    Pulmonary hypertension resulting directly from another medical problem is called secondary pulmonary hypertension. Lupus is one of the diseases that can cause secondary pulmonary hypertension.

    Pleurisy is common in lupus. Up to 60% of all Lupus patients, at some time, suffer from inflammation of the lining of the chest. The symptom is pain - often a 'catching' pain on taking a deep breath. More severe forms of inflammation and pleurisy produce fluid, so-called pleural effusions. Any fluid in the chest takes useful breathing space away, therefore causing shortness of breath. Pleurisy can be detected clinically and on chest X-ray. Fortunately, it usually responds rapidly to a short course of steroids.
    The heart and lungs are not the most commonly affected organs in lupus but pericarditis and pleurisy are often extremely distressing. Fortunately they respond well to steroid treatment.
    It is probably a good idea that you talk about your symptoms with your doctor so that you and he can determine exactly what the cause of your pain is. Remember, all of these conditions respond well to treatment, but you should begin treatment soon so that your symptoms do not worsen.
    I wish you the very best!
    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Default welcome

    Hi Liz!!

    It's nice to meet you. I too attend college. I am starting a semester next week. I only have 4 classes to graduate so, I just want to get it done!!! I know how hard it can be to attend classes while feeling miserable. I found that the spring semester is much easier on me than the fall semester. I hope that you find that to be true for you this semester. I found out the hard way that I can't do too much in the late fall/early winter. I think it's the weather and the stress of the holidays. The spring semester for me starts out kind of crappy but if I hang in there, I usually do much better in the end.

    Last spring my white count ended up low after getting bronchitis and getting run down. My dr. wanted me to "wear a mask" to prevent myself from getting sick when I went in public. Try to keep yourself healthy and get enough rest. Do what your doctor tells you, and if you have a day that you feel like you can do a lot, be careful!! I find when I "feel good" I push things and then I pay for it later.

    Karen

    Hope you are feeling better soon!!!

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