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  • My first rheumatology appt. 'bout lupus

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    Old 06-02-2013, 05:49 PM   #1
    neelee's Avatar
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    Exclamation My first rheumatology appt. 'bout lupus


    I just really need to talk to someone about the lupus disease I was diagnosed with about a month ago. As you probably guessed, I don't have the most vast health history but I have experienced many different problems in my life, like this year a had a severe concussion on by hitting the back of my head while snowboarding. I've broken both my legs and my hand. Sometimes I have trouble breathing, that's been happening ever since I was little. When I was little I used to cry in bed about how much my joints hurt and the doctors say that was probably a part of the lupus.

    My parents have told me not to talk to many of my friends about it because they know I don't like drama I thought I could come here anonymously and talk to other people who have the experience instead of people saying the fake "aww hope you feel better" because I know I won't be getting better anytime soon. So I'm writing this because this coming Tuesday (June 4th) I have my very first rheumatology appt. ever since I was little I've always had a phobia of dr.s appointments. I don't want to wear one of those smocks and sit on the table and talk about my life. I am a very quiet person and I've never met this guy before. I am a girl and I'm not the best at meeting new people, especially when I have to sit there in maybe one of those gowns. I'd rather just stay in my clothes and feel comfortable.

    I just need some advice about what they're going to say and talk about because my parents told me NOT to research the disease. Of course I already did when they told me that I just didn't tell them that. I'm very sick of all the people with the "I hope you feel better" approach because it gets really annoying after a while. It's very disappointing not being able to participate in sporting activities, going to the beach, school and hanging out with friends. I just want to be a little prepared for the appointment.

    Thank you so much,
    neelee (lupus)

    Last edited by Administrator; 06-03-2013 at 10:49 PM.

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    Ltucci428 (06-04-2013)
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    Old 06-04-2013, 03:33 AM   #2
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    Re: My first rheumatology appt. 'bout lupus

    Hi, Neelee, and welcome. Your memory of lying in bed crying took me back. You have people here who can understand, and in private. I hope your parents can understand how valuable such understanding can be.

    The physical exam usually involves low-key things like listening to lungs & heart, bending your joints, etc. It's low-key, so please don't worry about that aspect. The questions will be about your lifetime medical history. Even if you bring along your previous lab results, chances are good that the rheumatologist will re-do blood labs & urinalysis (you're sent to the women's room on your own), because good doctors like leave nothing to chance.

    In this day & age, lupus can be managed pretty well in most patients, so the main thing is start appropriate treatment and have regular checkups. I was actually quite surprised at how much better I felt once my med kicked in. Your knowing now & doing the right things will give you the best shot at the life you want. So grab this chance and don't let it go, OK?

    All of you---you, your parents & friends---may need awhile to learn and adjust. I did read library books, which helped me understand the condition & gain perspctive. I settled in OK, and even decided I like wearing hats. And I REALLY liked feeling better, having fewer tests & seeing fewer doctors, and getting fewer "mystery maladies". Hang in there. Please let us know how it goes today. Wishing you good luck, sincerely, Vee

    Last edited by Administrator; 10-12-2014 at 01:17 AM.

    Old 06-04-2013, 05:51 PM   #3
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    Re: My first rheumatology appt. 'bout lupus

    Greetings Neelee,

    Welcome to the Board. A recent diagnosis of lupus is very scary, I remember all too well 14 years ago. I had never even heard of lupus until then. Be sure you talk to your physician about everything that concerns you about the condition. That is why they are there. My rheumatologist is a dream. She listens and gives me options for management. In the beginning, it was trial and error with types of medications, dosage adjustments, etc. But it did get better. It takes diligence on the patient's part to be compliant with getting enough rest, eating healthy, diminishing stress when at all possible, and most importantly taking medications regularly. I found yoga to be helpful for me. It relaxed me and yet was not strenuous so that I did not injure myself. I hear you, about people saying "hope you feel better." That is because they probably do not know much, if anything about lupus, and feel that they do not know what to say. I think they sometimes feel uncomfortable because they don't understand.

    It is important to talk to your doctor and to do things that make you feel better. If you like music, indulge yourself. If you like to read, go for it! Anything that makes you feel positive is well worth the effort.

    Feel free to write anytime. It is an adjustment period...we fellow "lupees' know how overwhelming it can be.

    Old 06-20-2013, 09:27 AM   #4
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    Re: My first rheumatology appt. 'bout lupus

    Hello to you dear,

    I can feel how scary you are. I am not the one who will continue scare you and tell you how horrible Lupus is.
    Don't worry about your appointment; remember one thing, doctor is there to help you that you can have normal, healthy life. Lupus is not a death sentence so yes, you can live normal life with ups and downs though. Even people who don't have any diagnoses have bumps on a road, pains and aches sometimes. So remember, your doctor is your friend, someone who will listen and helps. I can understand you are private person, so am I, but when you are not well, you need to speak up in order for doctor to know all your medical history; do not hesitate to tell him every little thing, since for him it may be a sign of something important.

    I live with Lupus many years now, and I am private about it too. I have few other auto-immune conditions and nobody, but my family, knows about it. I don't need to be the talk of the town and not because I don't have enough confidence to deal with it, but I feel that health issues must be private... So if you feel uncomfortable to discuss your issues with your friends, you don't have to.
    I feel more comfortable to talk to people on this board b/c they are in same boat as I am and will understand and support better then friends who don't know how to deal with it. I don't like when people feel sorry for me so by not telling - resolves this problem.

    You will be OK, believe me. But please don't let Lupus to change your life. The only thing you have to do differently is to keep your doctors appointments and take your medicine as prescribed (if it will be Rx).
    Rather than that, you are the same loving and beautiful person who will live very happy life.

    Best luck to you

    Last edited by Moldova; 06-20-2013 at 09:28 AM.

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    children, lupus (sle), rheumatologist

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