Hi every one
Would like to say think this is a great sight nice to know am not alone, was diagnosed with rhymatoid arthrits at 5 always suffered with my joints,tiredness ect, wasnt till my kidneys started packing up they then told me I had SLE have had ups and doewns over the years with sweling, rashes and all the rest. my kidneys gave up some years ago and was put on pertineal dialysis, then that went majorly wrong giving me lesions ovr my bowl and stomach had to have a major op which left me ith a stoma bag probably for life (am 37) and a big round scar they could not close my stomach up after the op so had to have a machine called a vac system thet covers the open wound and puts a negative pressure on untill it heals over, so have no muscles there out all it is all very ugly to say the least my question eventually lol was to ask if anyone else had suffered with epilepsy with sle had a few fits and was unable to drive for 18months which really took it out of me as cant walk very far so driving was a real pleasure to me. Am driving again now thankfully as the medication has kept me seizure free for 18 months so was able to apply for my licence back. To further add to my problems am suffering with low blood pressure and they have told me I cannot go back on the transplant list. So annoying have done everything they have asked including having to get a skin graft to close part of my stomach that wouldnt heal. why they didnt try sort this earlyer is so annoying never even been mentioned until it came time to put me back on list, am now on yet another tablet which doesnt seem to be working and is constantly giving me cramps in my legs. Am at my wits end with it all. sometimes I feel so down. sorry for going on will leave you in peace now.