# 9

Sep 27

I saw the specialist in UK. We spoke about the sulphur allergy, the test results and the steroids. Don't think the steroids work best with me - since I had fever three times the week before whilst on a course of steroids, and the dangers of long term usage is worrying. Specialist suggested I try other treatment when I return but said I'd have to wheen off the steroids, so was given a lesser dosage of that.  The allergy was questioned. I wonder why Africa and the doctors/health care there is disregarded so much here, especially when I've found it to be so much better than here - and anyone from southern africa can attest to this.

The flight across the world for answers was an adventure.  I had fever on the plane, and breathing was difficult. I need to be careful, I need to stop smoking and find an alternative way to deal with the stress.  A healthier lifestyle too perhaps. More research required on all this. 

On Oct 3 saw a specialist in SA.  I found out I've lost 20kg so far with this.  A definite plus, even though at times I do really look "sick". I see it in my eyes sometimes, I hate not recognising myself in the mirror. The specialist said in one visit what it took the one here 15 weeks to say.  I felt more comfortable with the decision, the trial of the medication and that the treatment was the best considering the life long usage of it. I've got a follow up appointment in January, since thats when i plan to visit "home" next.

I felt better in SA, cant explain it, but I do.  Healthier.  The weather, the people, the peace of mind from the appointment there perhaps.  Or maybe all those.

Oct 13 - I had a pain in shoulder / back.  So bad it brought tears.  It's sometimes too much to  handle, and it's hard to understand or explain.  I seem to need rest. I never knew it were possible to not only sleep so much but I need it.

The steroids do help somewhat, but they keep me up until 1am. I'm wheening off them now and will begin other treatment today.  Two weeks of both, which hopefully wont be a bad thing.

I've been thinking more about a friend's suggestion to get more involved in organisations or groups on lupus.  To find out more, and do something to help people out there, like myself who find their world changed suddenly like this.