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Thread: Hows do you feel?

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    Default Hows do you feel?

    I have a mild condition of antiphosphilipid syndrome, but my mum suffers badly from SLE. I'm studying art at uni and am doing a project based around lupus and the effects it has on its sufferers, and when I began researching it I was shocked to realise how few people who don't have lupus have even heard of it. I would be hugely greatful if anyone would be able to reply to this thread about their experiences with lupus; for example, how you feel about it, how it's changed your life, how you cope with it and how you felt when you were diagnosed. This would be greatly appreciated, by anyone suffering or anyone who knows sufferers. I am aiming to make lupus more widely known, or at least by those who will see my work, and the more replies and opinions I have, the more accurate my work will be in representing lupus sufferers, so the more the better!
    Thanks for your time guys!

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    Lupus makes me feel weighted down, constantly have a lead blanket holding me down. Wrapped in a fog. When I first found out I thought it was the end of my life (I was 16). One of the first things my doctor told me was that I would have to plan to have children, because I would be a high risk pregnancy. Freaked me out becaues I was only 16 and not planning to have kids anytime soon, but had always planned on a big family and I saw that vision crash down right then and there. I've always had an interest in biology, and have decided to become a Rheumatologist because of this. Dont know if thats what you were looking for but I hope your project turns out amazing =) I think its a great idea.
    "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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    That's exactly what i'm looking for; I just need to look at other people's experiences as well as mine and my mums, and you're so helpful!I'm sorry to hear that, but you sound like a strong kinda person and I think it's amazing that you've decided to become a Rheumatologist- way to fight back! and good luck with it, i'm sure you'll be able to do whatever you set your mind to (:Thanks so much, very helpful (:

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    Hello Megs91,

    I've done that many threads it's hard to explain everything i've gone through but they're there for you to view, as a large majority of member's know my situation.
    I was born with it started feeling affects from the age of 5yrs old and at 14 more signs was showing, at 18 it started showing it's true colours by giving me ailment after ailment all connected to lupus till now at 42 and it's only been the last 2yrs i was diagnosed with Lupus and also what i have below linked in my signature but my god it is making me suffer now and like ritzbits i've never had children because of what i've gone through.

    When i actually come to think, i could right my own book besides advertising neglect in it off doctor's who never went a step furthur with bloods so i could have been treated years ago.

    Well i do know one thing now in life it's dragging and waring me down, sorry for ranting on but this is how i deeply feel.

    Terri x
    Last edited by Peridot20_Gem; 03-29-2011 at 01:31 PM.

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    i would be happy to help, but also do not know where to start.
    perhaps if you were to write a questionaire, we could answer it.
    that would have everyone thinking the same thing at the same time.
    make your research easier to decipher.

    send me a personal message if it makes it easier, love to help you.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by steve.bryce View Post
    i would be happy to help, but also do not know where to start.
    perhaps if you were to write a questionaire, we could answer it.
    that would have everyone thinking the same thing at the same time.
    make your research easier to decipher.
    That's a good idea Steve.


    Megs91,

    I would be happy to help too, but like Steve, I don't know where to start. If you could do a questionaire, that would really help.

    Rob

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    That'd be great, i've been conducting interviews and handing out questionnaires but wasn't sure if you'd want to answer a load of questions. It'd be hugely helpful if you could though, but obviously only answer the questions that you want to if you want.These are the questions i've been asking everyone, if it doesn't apply to you just put n/a, or if there's something you want to write that's not in the questions just add at the end. I'm aiming to make people more aware of lupus, so the more honest the better, and feel free to ramble and rant - its useful (: Thanks for your time!

    1- What kind of lupus do you have and how would you describe it, and your experiences with it?

    2 - At what age did you get diagnosed, and how long have you had it?

    3 - Does it feel like you've had it longer?

    4 - How did you feel when you first got diagnosed?

    5 - How do you feel that lupus have affected your life, lifestyle and personality?

    6 - Do you feel that having lupus has affected who you are as a person?If so, how?

    7 - Do you feel that your life would have taken a different path/ been different without lupus?If so, in what way?

    8 - Do you feel you having lupus has affected those around you?If so,how?

    9 - Do you feel you have their support?

    10 - What do you think about the suuport you get from doctors etc?

    11 - How do you feel about the medications you have to take (if any)?

    12 - What's the most amount of medication you've had to take at one time?

    13 - Do you feel the medication has changed you in any way?

    14 - How do you cope with having lupus?

    15 - Do you feel that lupus and the treatments for lupus get enough attention medically?

    16 - Do you feel enough people (non-sufferers also) know about lupus? (should it be wider-known, or does it not need to be?)

    17 - Any other thoughts on lupus?

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    as i stated earlier. i am happy to help.
    i have copied the questions, and will reply in a day or two.

    i also encourage others to reply as well.

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    I have opened this thread 4-5 times and I close it every time without comment. Please don't take what I am about to say personally, this is something that is wrong with me and not anything wrong with your questions. I believe sometimes things happen that cause us to look at ourselves in a new way so we can see what we need to change. This thread is one of those for me.

    I am angry. Angry that I have to answer questions like this. Not so much in this thread but to answer them in general. If I had cancer no one would have to ask me questions like this. They would know the answers already because they are informed about cancer. Why aren't they informed about Lupus? There is so much research being done on cancer, diabetes, Alzheimer and every other disease that people understand what being ill with those diseases are like. Why not Lupus and Autoimmune Diseases? Why do I have to have people look down at me and think that I just don't want to work when I can't get out of bed for a couple of days?

    Yes, I am angry that you have to ask questions like "did it affect your life". Would you need to ask that question of a cancer patient? No. You would already know because you either know someone with it or have run, walked, cycled, or given money to help fight that disease. That is as it should be. That is not how it is with Lupus and other AI Diseases. Why is it that people are not out pushing for a cure for this disease like they do cancer. Sad thing is that I know why. Too often we don't LOOK sick enough so they just think we want to ride the government "gravy train". Ha! Ask any of us that have been trying to get that how much of a gravy train it really is!

    Please understand that I am not AT ALL angry with you starting this thread and asking these questions. This is what should happen more often. People should want to understand what we go through being ill. Maybe it is that I am just starting to come out of a flare and I am way too emotional but the fact that you have to ask just ticks me off!

    PS I will answer the questions later because I won't punish you for doing what very few others will do. You are trying to understand and I thank you for that!
    Mari

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

    ~Winston Churchill~







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    Sorry this one accidentally got locked. That has been happening quite often. Thanks Sandy for the heads up! If ya'll see a thread locked and don't know why please contact Rob or I because most likely it is a mistake!
    Mari

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

    ~Winston Churchill~







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