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  1. #1
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    Default new

    hi im new to the support group
    ive had lupus five years and never bothered looking for support, but recently ive begun to feel totally overwhealmed by my life, i look at my friends doing all the things i should be doing and im just sinking so low, ive done everything my doctors have told me to do, ive had horrible treatments and i still feel like hell, i dont want to go on and on to my family and friends because i dont wanna worry them also i just dont feel they really understand.

    i really need ppl who have a clue.

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Noms;
    You did not say how old you are. But, in any event, everyone here is more than willing to let you know that you are not alone and we do understand. Having Lupus can be frightening, lonely and can wreak havoc on our emotional state. Such an unpredictable disease is bound to have devastating effects on us sometime, both physically and emotionally.
    There are some things that we can do to help us manage the disease and to help up to try to live a relatively normal life. However, when we are in an active flare (and it sounds as if you might be in an active flare now), all of our efforts seem to be for naught. This is not neccessarily true, it just may have to take some time before you begin to see the benefits of some of your medications and of your lifestyle changes.
    For example, if you are taking plaquenil, it sometimes takes weeks to months before the effects can be felt, the same can be true for some of the immunosuppressant drugs that we take and even for some of the steroids. So, do not give up hope on following your doctor's instructions and taking your medications. Continue to do these things along with the appropriate lifestyle changes and you will probably start to see and feel the effects. Also, learn as much as you can about Lupus, how it affects you personally, get to know your body and listen to it, learn about your medications and their side effects and learn about Lupus treatments. Arm yourself with this knowledge so that you can be an advocate for your health and so that you can work with your doctors and make informed decisions about medications and treatments.
    Also, you can come to us at any time and there will always be someone here who is willing to provide answers, provide information, give you support or just to let you know that we understand and that you are not alone!

    I wish you the very best!
    Peace and Blessings
    Saysusie

  3. #3
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    Default details

    thanks saysusie,
    i was diagnosed when i was 18 im nearly 23 now, i was doin my leaving cert at the time (exams to get into college) and due to the illness i did dreadfully.
    ive been in and out of hospital a lot, ive started on the plaquenil, steroids and losec but i just never felt better, i was constantly having flares which would leave me in bed for weeks, ive never gone a full week without some problem, 2yrs ago after a biopsy it was discovered i had kidney disease, they couldnt seem to get it under control, ive done cellcept, cytoxin etc and nothing seemed effective, im now also on blood pressure tablets and water tabs for the water retention, back in nov i got really sick and they gave me two infusions of rituximab... apparently its the wonder drug in america but its still quite new in ireland, by now i should be feeling amazing and according to my doctors on paper i look good but i still feel and look awful physically, i have bad water retention which is painful its come on suddenly this week and ive put on a stone this week, it slows me down. i cant seem to breathe properly and the joint pains are making it difficult to work...
    i know im goin on so much but ive never talked to anyone who actually knows about lupus, i know im not the only person in the world with lupus but im the only person i know with lupus.
    its so nice to talk.
    x

  4. #4
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    Default young with lupus

    Hi Noms-I was 18 when I was diagnosed with SLE as well. It sounds like you've had a rough time. I've had kidney involvement-done the cytoxan as well. Question for you-how consistent are you with your meds, you said you tried them-for how long and did you take it as prescribed. I'm asking because I didn't (you may be nothing like me), I was young and didn't want to hear about Lupus. I wanted to enjoy being young.
    Are you taking care of yourself all the way around? By this I mean eating well, getting some exercise, relaxing-not stressing? These are all things I've found helpful. I take a walk as often as possible--I don't know how the weather is where you live though. But, find something that works for you to help you relax. I like music. It is hard and I get sad sometimes, and that affects me physically. Try to stay positive and hang in there. Expressing yourself helps--so come to site whenever you need to-we will not only listen-we understand. You'll get through this and look back on it later (or you won't remember it if your anything like me)!
    Best wishes!

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    Hi Noms!

    Welcome to the Forum! I'm really glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    I'm sorry that you are going through such a difficult time, but please know that everyone on the Forum is here for you!

    Keep well and God bless!

  6. #6
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    thanks all who have replied ive been having a good browse through the topics and i cant believe it took me so long to join a site, i think its goin to really help. xxxxxxxxxxxxx

  7. #7
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Noms;
    Just know that we are here to help you, answer your questions, provide information, give you comfort and especially to make sure that you are not alone!!
    Do not ever worry about talking too much, we are here to listen and you can NEVER talk too much to us!! :lol:

    Saysusie

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