Hello kirschie
Lupus does seem firghtening and confusing to begin with, but you can start to feel a little less out of control by quietly learning a little more in your own time as and when it suits you. The site is useful for this and there are recommended books - perhaps for later.
You are being monitored already, so that is good - the most important thing.
One of the good things about lupus is that although it is not as uncommon as people generally think, it does not have to be severe, and whilst there is evidence it runs in families, many families have only 1 sufferer. What I mean is - your child is by NO MEANS bound to have it too.
I have lupus in a very mild form, so when I think of my symptoms, now my pain is controlled, and I am taking medication, my only problem is bouts of tiredness/forgetfulness, which I am learning to deal with. I have never had a thrombosis of any type and I have never been hospitalised.
Diagnosis has meant medication to reduce the potential risks if my condition becomes more severe. So I think I am very fortunate.
I used to get frustrated by the tiredness, but now I have some sort of a reason I find it a lot easier to accept. It is taking a little time, but I am getting there and can see marked improvments from only 12 months ago. I've learned to pace myself without guilt.
Coming to terms with the diagnosis takes different lengths of time for individuals. Sometimes you hit a low and take a few steps backwards again, but if you try to mentally relax a little, and not be too hard on yourself and not focus too much on the negative, you can feel a lot better just by getting your 'head straight'. Like I say - it can take time.
Christine is right. You really do learn to live with it. And the good thing is that with all the regular checks, any other things that come along with age will be spotted quicker than somebody not being monitored.
Stay in touch with the site and try chat too. People here are very kind.
Take good care.
