View Single Post
Old 04-29-2009, 10:17 AM   #4
Senior Veteran
Join Date: Nov 2004
Location: UK
Posts: 1,558
goldenwings HB User
Smile Re: Terrified during the most exciting time of my life

Hiya, just to add my thoughts on this. Only a rheumatologist can say if you have lupus or any other type of illness. Symptoms you speak of could point to a whole lot of things. This is why it is always best to consult a specialist in the area you are concerned with. Do not make the mistake though of 'telling' him you have/think you have lupus, but you must ask him what he thinks. He is the doctor and listen to him first and then if he then asks you what you think is wrong with you, by all means mention lupus, but don't go in there and 'tell' him - he will not be happy with that. Some doctors might think that you have read up on it and then told him about things - even though you will not have done, so be very careful. He should if he feels it necessary then arrange for the appropriate tests.

The other things you speak of are so very common and understandable. Any type of illness makes you feel so frightened. The thing is I am a lot older than you and was diagnosed with SLE when I was 16 years old. 'They' told my parents and myself that I would never do a, b or c in my life. My parents and I decided that this wasn't going to be the case for me. We knew it was going to be a hard battle, but we went for it. I say 'we' because they supported me in all ways possible, home physio, love, care mopping up the tears when things were hard and just being there.

I have lived a full life, worked, travelled, married and done a heap of things because I was determined that nothing was going to beat me as far as working to make things the best I could whilst having SLE. Sometimes it was and still is hard but I try to do things the best way I can and feel such satifaction when I achieve anything.

Ok I have now lots of disabilities and medical problems that are not lupus related, but I still fight and live, live and fight. This is the way I personally cope with my day to day world.

I was so very lucky because I had the most loving, caring and understanding parents and we fought together to get me on my feet literally - I was in a wheelchair for almost a year + 8 months the first time in hospital.

Thing is though that was a long time ago, but I count myself very, very lucky to have been diagnosed within 3/4 days of being hospitalised. I was put on a strict basic treatment regime which was the only thing that was available to me then. Now though treatments and medications have come on in leaps and bounds so nobody now should have to be fearful of not having the right programme of treatment sorted out for them.

Go to a doctor and ask and ask questions and don't come away until you are satisfied with the answers you are given. Of course remember you can come back here and there will be help for you for whatever you might be feeling - anger, fear, anything at all you might want to ask or discuss.

If I can be of any further help as an 'oldie' with SLE, let me know either on here or through a pm.

Take care,

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 04-30-2009 at 05:57 AM.