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amethystma · 04-24-2009, 04:39 PM

Greetings,

I'm new to this and scared.

What is one key piece of info or a suggestion that has been helpful to you during your journey with lupus.

I would really appreciate a sense of what I may expect.

Knowing is better than not knowing.

Thanks to each of you.

Amethyst

VeeJ · 04-24-2009, 09:42 PM

Amethyst, hi & a big welcome! Several things helped me. I wanted some sense of the doctor I ended up seeing. Reading lupus hardcovers made me see just how good he is. Ans I needed to see what I was up against, whether I had any hope for stability. Look in your local library for hardcovers written for patients. One excellent author is Dr. Daniel Wallace; another is Dr. Robert Lahita.

Posting here has made me feel part of a community who UNDERSTANDS.

Starting TREATMENT (finally!) and feeling improvement over the months restored some confidence.

When were you Dx'ed? What meds are you taking? You didn't describe your symptoms, but I hope they are milder ones. Many people stay subacute; and even those who have more acute problems can benefit greatly with meds and ongoing monitoring and care.

I hope you keep posting: you'll find automatic acceptance here. Our families & friends may not understand us so well (how could they?!), but the people here can & do. So I hope you post more soon. Meanwhile, warm wishes to you, from Vee

goldenwings · 04-25-2009, 04:28 AM

Hiya Amethyst,

I'm happy to meet you. Veej has given you such good advice as she normally does.

The only thing I would add is that if you have any - and I do mean any - questions, ask, ask and ask again your doctors to get the answers. It is your body and you have the right to know exactly what is going on. Don't accept everything that is said at first, if you are not happy with the explanation or don't understand the way it is said, then question it.

There are different forms of lupus and so doesn't always affect each person the same. In a lot of cases, the symptoms can be the same but the way our bodies react and respond to treatments can differ.

Of course we are always here for you. Ask us anything and if we are able we will answer to the best of our ability. If you get scared, upset, angry and just want to generally vent, please come here and we will be only too give you our support.

Take care,

goldenwings

Angel MJ · 04-26-2009, 01:39 PM

Hi ... was dx in 2003
good advice i have found ...
sleep well
eat well
don't sweat it
keep a journal (write your symptoms and rate them 1-5)
keep your own medical file (ask for copies of test etc)
reading, research (Lupus book by Dr Daniel Wallace)
get a good doctor ... one you can talk to openly & explains things to you
learn to know yourself ... only you know what and how much you can do
remember it is normal to be scared
know that you are not going mad (symptoms can be frustrating at times)
ask for help when you need it
know that you are not alone
keep posting

a positive attitude goes a long way in dealing with what ever comes along

mindy1974 · 04-26-2009, 07:40 PM

your going to be great! its been bumpy and ugly at times but all in all really OK! the people on this board will help you keep your chin up and teach you how to work with your doctors. keep reading and posting. get lots of support.
derlinda

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