Hi Princess and thank you for your reply as I have found getting ANY help in the form of really talking a problem, none of the so called "specialists" have seemed to care. This specialist has now twice wanted me to take this drug and I note that it has almost exclusively been used in trials and I have no back up or support if things go wrong. If I were in a hospital while on this and under supervision then maybe I would try it but I cannot, with all due good conscience, take it after reading it's side effect profile and how high the incidence of these side effects are. What worth has life when you are then open to various cancers, high blood pressure, diabetes and so much more ?. Then there is the part about not venturing into sunlight, I simply cannot bear to live like that and for what ?. I do not value my life so highly so as to live it in such poor circumstance, to hold on for holding on sake.
You are very correct about me being maybe beyond depression, I have suffered with a chronic back problem for years, that was hard enough and then to care for my parents, in their 80's, well it has all become too much and I am unable to take anymore. The other problem ( one of many) is that if I do experience the side effects then I am literally abaondoned and to get contact with the specialists is like getting blood out of a stone.
I think I have to reconcile myself to the fact that I have this disease, that it will be bad and often and to then deal with it. The specialists do not even know whether it is an auto immune problem or a bacterial response so we are the guinea pigs for them and I for one am not prepared to go through that.
I, simply put, have had enough, cannot take the glib remarks from the people that are making these decisions and need to try to calm myself. I am so sorry if this has burdened you in anyway, I do not mean to upset nor discourage but I do not think there are any miracles to come, hope it seems is my worst enemy.
At least I have made my decision and thank you so much for your reply. Funny but the part from a Bob Marley song comes to mind " Who feel it knows it Lord", well they do not feel it so do not nor will they know it. I am, like the R.E.M song says " Losing my religion" along with the plot. I think I have gone quite mad.